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Fibromyalgia Drug Warnings

FDA warns of suicide risk for 3 fibro drugs and 20 other medications

In December 2008, the Federal Food and Drug Administration (FDA) ordered the manufacturers of nearly two dozen medications to add new warnings about an increased risk of suicidal thoughts and behaviors to the drugs’ packaging.

At least three of those medications, pregabalin (Lyrica), gabapentin (Neurontin) and clonazepam (Klonopin), are used to treat fibromyalgia.

The new warnings were ordered after regulators reviewed 199 clinical trials of 11 anti-epileptic drugs and found that those taking these medications had almost twice the risk of suicidal behaviors compared with patients who took placebos. The increased risk translated to one additional case of suicidal thoughts or behavior for every 500 patients on these drugs.

Here is the complete list of drugs that carry the new warning:

Carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol XR)

Clonazepam (Klonopin)

Clorazepate (Tranxene)

Divalproex sodium (Depakote, Depakote ER)

Ethosuximide (Zarontin)

Ethotoin (Peganone)

Felbamate (Felbatol)

Gabapentin (Neurontin)

Lamotrigine (Lamictal)

Lacosamide (Vimpat)

Levetiracetam (Keppra)

Mephenytoin (Mesantoin)

Methosuximide (Celontin)

Oxcarbazepine (Trileptal)

Phenytoin (Dilantin)

Pregabalin (Lyrica)

Primidone (Mysoline)

Rufinamide (Banzel)

Tiagabine (Gabitril)

Topiramate (Topamax)

Trimethadione (Tridione)

Valproic Acid (Depakene, Stavzor Extended Release Tablets)

Zonisamide (Zonegran)

If you or a family member take one of these medications, it’s important to be vigilant for signs of suicidality and seek help immediately if you suspect problems.

Michele

13 Aug 2010, 09:43

To Amanda:

I understand exactly what you are talking about. My fibro is as severe as you describe when I first started 8 years ago. Mine started after a fall, knee surgery, and a blood clot from the surgery. Then a developed severe body pains it was hard to take a shower my skin hurt. Daily headaches, the inability to sleep and stay asleep, constipation, stomach, gas pain, heartburn, tingling in my hands, back pain, severe fatigue I found it hard to get out of bed. My joints were stiff in the morning and body didn't want to move. I was sure I was dying. Before all this I was a Special Education Teacher and I worked 10 hours a day and stood almost all day and now I could barely stand to go from the couch to the bathroom. My DR. told immediately he thought I had Fibro which I never heard of, but he ran numerous test, MRI, CAT scans, Ultra sounds, and labs nothing was found out of the ordinary. I was sent to a Rheum. Dr. and he ran more test and filled out a 15 page info symptom form. He diag. me with Fibro/CFS. I didn't understand how this was possible. Prior to surgery I was fine. I had allergies and asthma that is it. I was Fine. That started my quest for answers I saw many specialist and tried so many medications and have gotten very sick. I have had to have many operations and many hospitalizations. They say Fibro won't kill you well I can tell you it will destroy your life physically, emotionally, and financially. I was married the year before I got Fibro and now I am separated and devastated. I use to be intelligent and enjoy reading books. My memory has gotten so bad that I am unable to remember what I read the day before and I find it hard to concentrate. I take my mom for her dementia appointments and they quiz her I fail every time. I tell my Dr. and he says it is because of the meds I am on. So, the option is go of the pain meds and never get out of bed again. Not really an option. I have had some improve, but that is due to meds and that was due to spending the past 8years dedicating my life to finding help. I want my life back and I refuse to give up. So, you need to find a DR. that will help you and believe it isn't just one. I have seen many and taken what I have needed from each and when something new comes around I try it. My pcp is willing to do whatever I want. You need to have a good relationship with you DR. I have found that Lunesta helps me sleep better, but not all the time. I take provigil to wake me up and give me energy. I take codeine daily for pain. I take celebrex for inflamation. I take topamax for headache/migraines. I also eat a lot of fruit/veggies. I take b12,b6,d3,evening primrose,fish oil, coq10, calcium, rhodiola, and multi vit. Also, go to a YMCA and get into warm pool therapy. You can do gentle yoga or chair yoga. All of these things can help. I am unable to exercise any other way. Reduce the stress in your and find time to meditate.
Good luck- Know that you are not alone!

Kathy

09 Jun 2010, 12:07

Amanda,

It sounds like your body is quickly deteriorating due to malabsorbtion. Ciliacs disease can cause this. Try visiiting a vitamin store and get a liquid multi-vitamin and ask doctor to test for ciliac disease. Hope you are feeling better soon!

Molly

04 Jun 2010, 15:36

I hope this will help for all of you trying to get SSDI. Good Luck God be with all!

*Founded in 1984 by Jim Allsup, a former Social Security field representative, Allsup Inc. was the first nationwide, private Social Security disability claims services company. The company built its reputation on the philosophy of “You stay at home. We do the work®,” as well as an expert understanding of the specialized needs of those with disabilities.

During this time, Allsup has helped more than 130,000 people with disabilities receive their entitled SSDI benefits. More than 600 employees located at our Belleville, Ill., headquarters and around the country support the needs of our clients.

Throughout our history, Allsup has positively influenced how the SSA serves its applicants. We educate our customers on the Social Security disability process, making it less confusing, less intimidating and more convenient for people with disabilities. And we provide the SSA with a well developed claim that allows its staff to issue an informed decision. We are very proud of our 98 percent award rate for applicants who complete the SSDI process with Allsup.

In addition, in 2008 Allsup began expanding the True Help® it provides to those with disabilities, providing access to a broad range of financial and healthcare information and services that help our clients live lives that are as financially secure and as healthy as possible. Founded in 1984 by Jim Allsup, a former Social Security field representative, Allsup Inc. was the first nationwide, private Social Security disability claims services company. The company built its reputation on the philosophy of “You stay at home. We do the work®,” as well as an expert understanding of the specialized needs of those with disabilities.

During this time, Allsup has helped more than 130,000 people with disabilities receive their entitled SSDI benefits. More than 600 employees located at our Belleville, Ill., headquarters and around the country support the needs of our clients.

Throughout our history, Allsup has positively influenced how the SSA serves its applicants. We educate our customers on the Social Security disability process, making it less confusing, less intimidating and more convenient for people with disabilities. And we provide the SSA with a well developed claim that allows its staff to issue an informed decision. We are very proud of our 98 percent award rate for applicants who complete the SSDI process with Allsup.

In addition, in 2008 Allsup began expanding the True Help® it provides to those with disabilities, providing access to a broad range of financial and healthcare information and services that help our clients live lives that are as financially secure and as healthy as possible.

Char

04 May 2010, 19:51

To Amanda,
Have faith sweetie! You are so young to be diagnosed it probably means 2 things: a)you have one wicked case of fibro and b)you are getting acknowledged faster from physicians than most of us did! (which should translate into better treatments,more doctors really are beginning to understand this as an auto-immune problem.) My own case: I've had it I think since at least my last kidney surgery about 12 years ago... I had swollen ankles, elbows, heavy pain (everything hurt-all the time), no memory (that one was a kicker as I had just decided to go back to graduate school again, could not get any restorative sleep and had absolutely no energy- oh and my feet were all tingly asleep so much I couldn't feel them in the shower. I got the run around from 2 doctors, then hit paydirt on the third: I told my new reg. doctor she HAD to send me to a Rheum. specialist as I got no relief at all from the little stuff she handed out.She referred. I did my homework and when I went in the RA Dr. asked what I thought I had, as she found that some patients who had been on there own for a while and were versed in internet, had usually (sanely) listed their symptoms then found the probable (and usu. correct) diagnoses online. I said that based on what I found I had been suffering with Rheumatoid Arthritis and Fibro. After she completed her workup she agreed. (all in one visit!) Having either was bad enough, but the double whammy near to killed me. I am still working full time, gave up going back to school (a bummer)but my husband allows me the weekends to mostly R&R and he does most of the housework. I really thought I would need to take the early med. retirement. I can no longer clean house well, and do any gardening sitting down and working sideways. I have not had one day with just a "Little" pain. Each day is a new chance that I MIGHT feel better (or worse) and I make of it whatever I can. Right after i was diaagnosed,I trained my students in my theatre & art classes to do as much as they could themselves, and now they help train the new recruits. This year's theatre production is in 2 weeks. What gets done, will get done. No one will die (except maybe me- I take my cane to school each day, ready if needed). Parents will be happy; Students will help me out if needed, and I will again recuperate immediately following. But- without a good support system (my mom was one, my husband, great students and understanding children, and a fantastic principal, [though not so much my teaching peers]) and doctors who really listen- it can seem like the end of the world. This year I was blessed to find a great pain specialist who really trusts me (she knows I hate taking any meds, but will take what I need and absolutely not one extra without calling her. She has me on Gabapentin (Neurontin- it took a while to build up in my system, and Percoset for the bad times. Ultram is a waste of time for most Fibro- it does not begin to get near my pain. On the worst days I wish I was on regular Oxycontin! (My uncle's wife has a worst-case scenario of fibro, lupus and other problems and the only thing that gives her ANY relief is that.)It has only been in the last year that I really feel my head has come out of the tunnel; I am always afraid this symptom will come back. My inflammation from the RA has settled a bit; joints no longer swollen so bad but I am developing lumpy spots and my mobility and balance is negatively affected. I take Ambien for sleep, usually on weekends, as I hate to still have it in my system on the mornings I teach. Most pain and sleep medicine works wierd on me, so I try anything out in small doses first.
Keep trying. Fibro is bad news because it does not respond predictably: what works this week may not work anymore next month. Some medicines will affect you wrong: most sleeping pills keep me up and strung. But be willing to try, and know that all of us are pulling-together, as a team. None of us wants anyone else diagnosed with it, but we will all of us help you through it!
Char

MARY

04 May 2010, 11:16

I really am concerned about some of these writings I am afraid some are not getting diagnoised correct and on too much medications. Now I am concerned about AMANDA she is so young. my story I at around 62 started having pain all over my body and had night sweats and so on like i was going through menapause but I ws too old for that even when I was that age I did not have too many symptons .So I started telling doctors and I had b-12 shots,I starded experimenting with my night clothing, I went to yoga for 3 years I went to a orthipedic surgeon he tried 4 injections of steriod nothing helped I was always told by any doctor it was arithitis, I did not agree.I had tried the LYCRIA that was somewhat helpful. I did not even see a doctor to give it a try I got it from a friend but told my doctor I was taking it.So at age 78 I am still suffering pain so I am a believer in chiropractor,(but you have to get a good one to get results)I tried one and then another and in a 5 minute walk of my home I found a good one he has a traction machine and it really helps I do not take any arithitis medication. my medicare pays for my treatments.(please do not let any chiropractor doctors that want you to be put on a machine for around $4.000.00 for that adjustment that insurance will not pay for.I checked that out and said no) then a friend told me of my neighbor hood chiro. had a smaller type machine so he uses it on me insurance pays And in september of 2009 I had shingles hit me in my left foot under my foot and only 2 sore spots after 5 days of taking a prescribed pain killer and the doctor perscribed over the phone,it did not help I was not getting results and I could not stand the pain I went to emergency and with the doctor there and my self checking we found the sore spots on my foot then i was diagnoised. after 2 months of pain I started to get better, but have found the nerve endings damage has stayed with me after 6 months and I have come to the conclusion I have been dealing with nerve damage for years.When shingles were found I was told to stay on Lyrica.Then I find my insurance did not pay for that so my pharmists told my doctor to try Gabapentin ,now I know some say it is not good for them but I do pretty good on one in morning and one at night and my chiropractor that puts me on the traction then I can continue to do my hobbies, not always with out some pain but very blessed I can have a life. I have had to really been careful about doctors and I have had to diagnoise my self. please study your bodies and stay away from unneeded medications. I read some little health magazines and some times you find helpful items. I have restless legs and interfers with my sleep I recently read to try tonic water and believe me I am drinking it at bed time and early morning I get up and drink a glass when my legs start and it truly helps, but if you try it please no gin. also the chiropractor is good with TMJ I went to a physical therapy ,no help from the treatments. If you do try a chiropractor, stay with it remamber he cannot help you with one or 2 treatments. Also try to find out if you could have NERVE DAMAGE it is like the problem diabetics have and I am no Diabetic, so you could have that instead of fibromalgia. I am soon to be 80 and I have tried to stay active and stay away from medication I do not feel is helping. Look at it this way when doctors want to prescribe you with more medications without really finding your problem, I always think that doctor has stocks in that drug and want to make little money off me.

Vicki

02 May 2010, 01:11

Wow! There is a lot of pain out there, not just here.
To the young person who posted recently: This can be a confusing & long process. I think that once your in the "Fibro car," you should look around for other passengers. I seldom have heard of anyone with only FMS, so usually there are what I call traveling companions like RA, MS, Osteo, IBS, degen disc disease, thyroid issues, Migraines etc.
It may take awhile to find the medications that are helpful to you. Over the yrs, I've tried many and now, I'm on 9 different ones daily. I have other meds that I can take when there is a flare, increased pain, migraine etc.
Don't feel intimidated about changing Drs. or going to another dr for second opinions. When I went to the assoc dr. in my rheum's practice, she put me on a different muscle relaxer & I experienced a significant improvement. I've been going to my primary care dr for 14 yrs so he knows I'm not looking for extra meds bc I am always trying to take the least possible.
Having a daily medication log helps them & will help you. First, if you check a box or write down a note every time you take something, you won't take too much or skip a dose. Also, if there is an emergency, there info or someone about what you have taken that day & recently. I keep a sheet with about 10 days on it and boxes to check with boxes for notes for like add'l meds, increased pain, no sleep etc. I have logs going back to 2005 so I can tell if there were side effects or benefits like less pain meds needed after a medication change.

I wish you and everyone else all the best along the way.

Amanda

24 Apr 2010, 09:21

I am 21. I was diagnosed with FM,IBS hypothyroidism and they are still running tests.

I am still just so confused, I don't even know what comes next half the time, and each time I go to the doctor it seems like something new is found, or I get slapped in the face (usually both). It seems like there are two sides of the totem pole when it comes to FM, and you experience both sides when discussing it with anyone, even in the same conversation; this has been one heck of a rollercoaster ride. I have never felt so alone in my life.

I have tried Cymbalta with no relief, and am currently on Savella with no results. I cannot be on Lyrica because it is known to cause tumor growth, and I have cysts (so they say). I have lost over 35lbs in less than three months due to the newly found thyroid problem that they refused to believe for months (my hair has been falling out in handfulls for two years). My bones feel like they are breaking, my shins and forearms feel like they are grinding together right in the middle (where it is physically impossible- when I am not even moving) My back, face, legs, arms, places I didn't even know it was possible fall asleep=tingly (you could punch me, and I wouldn't feel it); muscles I didn't even know I have; deep, deep muscles, have full blown charlie horses for 10 to 20 seconds at a time, which in the begining was just spasms. It seems to be getting worse every day. I am 21 years old, and I cannot remember yesterday, I have to use a cane, I cannot work, nor is it looking like I will ever be able to work because my condition is getting bad so fast. I cannot talk because when i do I say things so backwards normal people cannot understand me. I am drained each and every day, but that is because without medication I do not sleep, period- NO SLEEP. Others have compared FM to the flu; well I beg to differ, it feels like every bone in your body has been crushed into little itty bitty pieces and you do not have a cast on, so every time you move your bones are jabbing you in all the wrong pieces. When others describe FM, it just makes me think that FM is actually not what I have; which is why I beg my doctors to keep running their tests... so anyone, everyone with any information... contact me... I am at a loss here; Google me, facebook me, myspace me. I need more information, I need to compare symptoms or something, I just do not know what to do anymore! Thank you everyone!

Deb

06 Apr 2010, 16:32

I'm 58 and was diagnosed with FM and arthritic t.m. joints in 1986. I had surgery to reconstruct the t.m.joints in 1992. I still wear a splint at night to keep from grinding but, so far, haven't had to take anything more than fioricet for pain, usually under stressful periods or bad weather.
I was lucky that my tm jt specialist had a friend who was a rheumatologist and specialized in sports med, arthritis and fibro. He diagnosed me right away and started me on a regimen of muscle relaxers, an antidepressant to sleep and motrin.
Exercise has always been a daily part of my life and even when I'm low in energy I still go, only doing 8 miles on the eliptical instead of 10 or 11. I also do lower body weight training and swim on alternate days for my upper body. I also go at least once a week for massage therapy and use a chiro.
I'm taking neurontin 1200mg a day, 3200mg of Motrin a day, zanaflex 36-42mg a day, fioricet as needed for pain in tm jt's, vicodin as needed for muscle pain(maybe 10-15 a month depending on my stress level), trazadone 200mg at night, zoloft 200mg a day, lidacaine pain patches, provigil 200mg(this is a BIG help with staying awake and alert), Magnesium, Calcium and a powdered multiple vitamin.
I also receive Botox injections in the cervical & thorasic area as well as upper traps and shoulders every three months.
In Feb, I was referred to a pain management doc by my rheumatologist and had upper thorasic radio frequency ablation done. This procedure burns the facet nerve and releaves the pain along the spine. In fact this Friday, I'm having the middle thorasic nerves fried. Check the procedure out. It's extremely expensive if you don't have insurance but if you do, check it out. It can last as long as 9 months. You can google it to understand better what goes on.
I'm hoping that with the procedure I'll need less Botox with the thorasic area calmed.
Good luck to us all and may 2010 be better than 09 for all of us. :-)

LOUISE

23 Feb 2010, 23:21

I would like to comment on Linettes condition i have fibro raynauds connective tissue disease severe sleep apnea hashimodos (thyroid)u have a lot in common with me its shit isnt iti also have IBS a naturopath helped a few years ago with ibs but financially its hard but the outlay would of been about $120 cons and medicine it was really worth it i get 2 scared to eat because of the consequenses i would just like to know how much pain do u have to be in before u go to the hospital i always think i am wasting their time do u have to wait until its unbearable louise

nancy hoiaas

08 Jan 2010, 15:42

to Sandee

same name as my daughter... may you be blessed and perservere with the chronic pain of FMS/arthritis... chronic pain... heart goes out to you

Linette

05 Jan 2010, 15:41

Hi, all; just found this place. Yeah, Fibro is horrible, but I found something that kind of works for me: OTC SAM-e. I discovered it by accident; I thought I was just taking a vitamin, but it cured 80-90% of my pain. That was 2 years ago. However now, it's like playing Russian Roulette with it... I have to constantly adjust the dose. I have my doctor's blessings though, 'cause nothing else worse, and antidepressants make my migraines ER level. I am still playing around with it. But like antidepressants, it doesn't work as well as it did. I used to be on Paxil too, but after Menopause my chemistry changed, and I could no longer tolerate it.

I also have herniated disks, torn achilles tendons, IBS, GERD, gallbladder problems, a LOT of stomach pain, osteoarthritis, and asthma. Oh, and hemiplegic migraine.

My IBS is unbearable. Now, since trying to take the red yeast rice that my doctor recommended (for high cholesterol, though I eat low -fat), my joints and muscles are really hurting, so I may go off (worried about rhamdomyalosis! Sp?)

I used to take fish oil, but what with the stomach problems and additives in vitamins, I have temporarily stopped, until I can find purer blends.

Yeah, I'm on Disability, too; I'd die without it (even though it doesn't pay much... but the Medicare sure helps!)

I can't exercise as much as I would like... I find one day inside (resting), one day outside (with activity), works for me. When I can do it, that is! (LOL!)

I also have sleep apnea and need a CPAP. I am trying out a 12 Step group, for the spirituality.

Thanks.

Kim H.

17 Nov 2009, 13:50

It's been a long time since I wrote anything on this site. But my condition just keeps getting worse. I have been dying to loose weight, but the weight loss diets(in stores) I can't use because of one condition or another. My doctor just keeps telling me to exercise, well walking on busy streets is dangerous when there are no sidewalks. And since the pool keeps getting shut down due to lack of staff, and the 2 gyms here look like there's never anyone there to help you, so of course you can't get in. There is also no Yoga here, or anything like that. I have gone to the Chiropractor but getting an adjustment leaves me in pain and at the same time takes some away, but it doesn't last long and is expensive. I'm going to try this new massage place and it's expensive too but not like the one my dr. wanted me to go to, so I'll give them a try. When I lived in BC the city we lived in had Chinese massage and it was wonderful I always felt great after - however two things well maybe 3. 1 we don't live there anymore, 2. this little place doesn't have it, and 3 it was cheap in BC and I could claim it on my taxes and then I wasn't in as much pain as I am now or was when we moved here.
I loved your info Linda log entry dated Oct. 20. I hope this guy finds something and finds something to help us. My body is so sore and with everything else I haven't been able to get the H1N1 vacc due to the lack of the vacc. even though I'm in the High Risk Group, but I'm not a child and not elderly or pregnant. I'm hoping that this upcoming batch I will qualify for before I catch this bug. I was turned away when it first came out because my nurse said that I couldn't get both shots at the same time- however my husband went to a different clinic and got both shots, the reg. flu and the H1N1.
Anyways back to FM, Chronic pain, PTSS, etc.
My doctor wants me off the fentanyl(spelling depends on company), because I take such a high dose and it's not really working anymore.

therese

17 Nov 2009, 02:36

I have been diagnosed with fibromyalgia and osteoarthritis in 1984 along with cronic fatique syndrome,The pain is so bad I can not even have a relationship with a guy, I have been single since 1996, I have guys that are , so called friends, but that is it I can not keep a boy friend because, they want more than just a friendship, Haha, oh well, I gave up on that idea, although, If I could find,someone for companionship that may be good enough!But I haven't found anyone that, whould , accept that, I have no interest in doing anything so , I guess I will have to go the rest of my life without none. there are other things than that, I have other conditions , I am sure, I have no medical so I don't go to the doctors any more , because I tried to get help and was denied for over 4 years.I am going to a physcyitrist,??? to help me with depression,and other issues,because , I get that help for free, I live with my daugter, and feel bad, because she supports me. I think it is sad I am now 52 and I feel like I am in my 90s, my dad is 83 and moves better than me, I know how you all feel ,I wish ,other people that don't have these conditions , whould be a little more understanding, but they don't realize because, they haven't gone through what we all have,I pray God helps these doctor's find a cure,and help people with the right diagnosis, sooner so people don't have to go so long without the right meds...Soory for the bad spelling!!!

cheryl

03 Nov 2009, 13:30

I have fibro and had knee replacements that didn't work because of it.I have the nerve damage from the fibro.
My Dr. said if he had known I had Fiibro he would never have done the knee replacements.I would be in a wheel chair today if he hadn't done them.
My knees have felt like someone is holding a torch to them.I had them done in 2002, long time for a torch.
I took the cymb drug and it helped. my daughter was given the same drug and developed glocoma and went totally blind. After 9 surgeries she has her vision back, but still has alot of problems.
Back to me I have the pain and a high tolerence for pain.I did the pain clinic with thedrugs that litterally tore my stomach up. I wound up having to be scoped 3 time to get rid of all the acid the pain meds had caused. Stay away from pain clinics they are there to make money.Most people I know regret ever going to one.
Now let's talk about ss# Fibro used to be a catch all for everything. At least now it ie recognized as a disease.Thank God.
I did my ss# myself.I had delt with them for 4 years trying to get it for my husband.Never got it.Anyway I applied for disability and it went through in 99 days. Honestly God was with me.
My husband died from a massive heart attack Jan 11,2009.He should have got his.Life is not fair but we have to deal with the hand we are delt.
God Bless all of you and hang in there.
I get up everyday and say come on knees one more day.Just call on God he's listening, I know sometimes it seems like he's not but he is .
Keep your faith it works.
Cheryl

Linda

20 Oct 2009, 21:59

has anyone heard about the discovery of a retrovirus as the cause of Fibromyalgia? Dr ?? from Univ of Neveda made the discovery, should open up a lot of doors to more researce and medications to treat the cause, not just the symptoms. I for one am tired of playing 'shot the pickle' to find medications to help with the pain I am 44 years old, tired of people jugding me like I am a lazy,not having any idea the pain I go thru orhow hard it is to do most anything. I am tired of having a medicine cab WAY TOO full!

jodi

02 Sep 2009, 21:16

i'm a 46 yo nurse, working in the medical field for over 23years, diagnosed with fibromyagia/irritable bowel/hypothyroidism. has been a aweful experience, being this young and feeling like i'm in my 70's. the worst is the fatige and constant pain and feeling like you have the flu 365 days a year and then trying to work 5 days a week and listen to other people compalin how bad they feel, i'm burnt out. i sleep all weekend, i have afarm with horses i love, cows.dogs,chickens,cats,love bird. when i force my self to get out side and ride my horses the pain is undercontrol believe it or not it is just getting up and out the door. the fatique and feeling like the flu is a killer. i try to tell my self everyday someone out there has something worse then this but when you walk in these shoes it's hard to be chipper. i take medications for pain, sleep, muscle pain. more ibuprofen then i should but oh well got to keep moving. some weeks i can be in bed for 8 days straight and just sleep. if someone out there has some energy to spare i sure could use some.

Elaine

30 Aug 2009, 21:07

Hi everyone. This is my first post on this blog. Just scanning down through the list of recent posts I noticed how many of you (like me) have ra and fibro. I also have seasonal allergies, dust allergies and food allergies. If I could, I would tell every scientist doing research on any of these ailments that somehow they are related. Thankfully my ra is in remission but the fibro acts up periodically and the pain from it alone can be quite depressing. But, so many of you sound like you are suffering a great deal more than me I feel guilty just for bringing it up. God bless you all. One thing that's been very helpful to me is guided imagery; particularly the cd's available by Belleruth Naparstek. I'm not pushing her products - just wanted to pass along that they've just been very helpful to me when my body needed to be quieted down.

rebecca miceli

07 Aug 2009, 00:04

hi guys: I have read three or four of the emails and feelI awful that the majority of you are still in pain; have not applied for any disability, etc...Just to let you know: I am an archaeologist--still going to dig sites, am married to a professor, have ten dogs, two cats and a brand new baby Mcau who was a birthday gift. He takes a shower with me evryday and I bake for the weiner dogs when I am home. I have severe RA, severe FM and Sjogrens. I just turned 60 in June: I filed for SS disability and received it in 1999. I take doxepin to sleep--vicodin when needed only; swim when I can and WEAR A PAIN PATCH. Women, you need to ask your doctors about one!!! I live in WV and drive 8 hrs. one way to Ohio to see my rheumatologist. He mails me my prescriptions to WV...I maxed out on Remicade two yrs ago...will try orencia..see how it goes...when I am able to get beyond my pain and fatigue, I have a unit called ALPHA STIM..it makes a tens unit look like Walmart!!! it makes no noise or feel anything...it works like your own neurons...I carry it with me ALWAYS!! p.s. before i GO: I have had: three total knees, three shoulders, both ankles, both two toes with screws...WE JUST TAKE A LICKIN AND KEEP ON TICKIN...that is, until something new comes along....hang in there ladies, email me and keep your faith...check your meds, pain patches, disabilities...love to all, i have to rest up for my digs...email me if just to talk...I HAVE BEEN THERE AND AM STILL HERE!! just ask my boogies and bird....LOL, LOL...

Jan Garrett

21 Jul 2009, 11:53

Hi everyone. This the first time I have ever found other people with some of the same health problems as me. I don't believe I'm as bad off as some of y'all. I was diagnoised with fibromyalgia after being sent to a RA doctor. I had never heard of this, I thought it was another way of saying it was all in my head. I'm 55, I have copd, hypothroidism, bipolar, post tramatic stress, degenertive disc diease,osteo, chronic depression, chronic bronchitis,to top it all off I'm GEMINI.just a little humor because if we can't laugh then we'll never get better.I'm like y'all, as long as I can remember I've been told there's nothing wrong, it's all in my head.Well they're right, it is ,and in my arms, back, hips so very bad, my legs and anywhere else you have. I've been put on so many pills that they had to be working against each other.I take the ones that seem to help me cope with every day life and dropped all the rest. I might add against all the advice to the contary.I too am on disability, it took a couple of years but you have to get a lawyer, they have ways of finding things that help you. My advice, I know you didn't ask for it,if you're going for disability GET A LAWYER.I also have the burning feet and legs, the night sweats, there is a place all across my lower back that burns when i stand more than 10 minutes.It burns as if my back had caught on fire.I'm sure we all have different symptons as well as the same. I guess what I'm trying to say is don't give up hope. As long as we are breathing we have a life.I had a daughter fatally injured in a car wreck and Iwas ready to end it all, losing her ,my Angel girl, and the pain was getting worse, it seemed like the only thing to do.BUT that is not the answer.We all have some one that would grieve to no end if we took the easy way.We don't need to put our pain on some one else.God put us all here for a reason,one day He'll let us know what it is.I'm not religist ,think i spelt that wrong, but i do believe we were all put here for a reason.So keep on keepin on ,as some one else said, we have to have hope that it will get better and so will we.My love and thoughts are with US ALL. JAN G.

Pat

24 Jun 2009, 04:36

I am a first timer on this site and have to say that most of you have conditions that are much worse than what I have. I am 62 and was diagnosed with FMS in 2005 after seeing a few docs who did not believe in FMS finally found one who did; also a great neurologist who helps a lot more than my pcp. I have been teaching my pcp about new ideas and drugs that I find on this site; really a shame when we have to train our drs.

I also have spinal stenosis, arthritis in hands, feet,lower back, carpal tunnel syndrome,CFS, neuropathy. And then there are the things that do not have "names": dry mouth so bad that I have to have the rest of my teeth pulled because the enamel is gone, had dry eye problems but ended up with closed angle glaucoma in an emergency situation, had to have laser surgery done the very next day on both eyes. Dry eye situation still made it necessary to put in "plugs" to keep moisture in/around eye. My skin is very, very dry; I cannot eat most wheat products so I guess I may have celiac, cannot tolerate oatmeal so oats may be out too, and now I found I cannot even drink 1/2 cup of coffee in the am or I cannot leave the house for at least half a day! I have IBS, GERD and Barretts' Esophagus.

My knees hurt and my hips mostly the right side; the bottom of my feet burn after going out for a walk or sometimes just for no reason. I had breast cancer in 1999 (lumpectomy & radiation) and have been cancer-free ever since YAY! That may have been my trigger for FMS; then it came on slowly. I also lose so much hair when I was it. If I am in the shower, I have to rub my hands together to get the hair off into a sm. ball and also rinse my body to get all the hair off so I can wash me..it;s so bad.

I used to walk everyday; I would walk 1 longer walk and then maybe 3 one block walks. This was when I had my mini-doxie with me. He got sick and I had to put him down on April 20th; I had him for 10 yrs.
Now I hardly go out..more depression and more pain.

I am on Gabapenten, Topomax, Celexa, Zanax, Flexerill, Nexium and AdvilPM. I also take Calcium , multi vitamin, fish oil caps, and artificial tears. I used to be on Vicodin but it really only made my mind fuzzier and did nothing for the pain so I stopped taking them. I still have pain...it seems as with all of you, that it just never goes away. Some days it is more that others. The A/C in offices really bothers me; makes my muscles hurt.

I am on disability, took about a year to get it and I got a lawyer to handle it; no way was I going to deal with all the paperwork with my fuzzy brain. She did a good job..asked me if I cared if I won on principle (FMS) or just won (which would be on depression) I didn't care by that time I just wanted it done. And it was done...on depression but included FMS. It isn;t enough to live on but I finally got my deceased first husb pension. I can live on both and it is the medical insurance that you get that is really imp. I am on Medicare now...not usually avail. until 65. And I have a Medicare Rx plan thru AARP and Medicare has determined that I get extra help with my Rx because of my income. So my scripts that would be unaffordable to me are very affordable and I can get them all.

I have gone on and on but I hope that some of this will help some of you who have wondered about disability....do not wait. File with SS and then get a lawyer; make sure he/she has dealt with FMS/Chronic Pain. I even got back money from when I first filed with SS.

These are just my opinion and my experiences. Please make sure you check it out for yourself with SS and/or a competent lawyer. SS limits what a lawyer can charge you in disability cases at least in AZ.

As you can see by the time of this entry, I have a big prob. with sleeping. I even take Advil PM and I still have a hard time; No caffeine at all today. So frustrating!

My best peace is now found in my church and it's members and activities. As I get lost in His Word my pain disappears.

Love and Peace to you all

Donna

16 Jun 2009, 12:38

Hi everyone. I have had ra,fibro,oa,and several other forms of arthritis for over 7 yrs. I fought for my disability for 5 yrs and only got it after an auto accident that caused herniated discs in my L5, S1 and bulging discs in my L3 ands 4 lower back. I have had 1 surgery to remove part of the disc and now the doctors say I need a fusion. I don't know what to do. I am afraid
because they can't guarantee that it will help with the pain. The accident left me with numbness and tingling all the time in my left leg all the way down to my foot. I think it is called neuropathy. All I know is that it hurts. I suffer all the time with my back,feet, legs hips shoulders, neck, etc.
I'm not sure whether the hip pain is coming from fibro or the back injury. The doctors say I am on too much medication. I am taking 1 valium.5 mg 3 times a day as a muscle relaxer, cymbalta 2 times a day, topomax for headaches, 50mcg/per hr of fentenyl patch and lortab 5mg 3 times a day for pain for my back. I am also on 8 methotrexate a week and I started on Embrel about 2 months ago. I realize these are strong pain relievers but my pain is very aggressive and I don't want to be on drugs , I want to get better. I walk and do some water walking (not as much as I should) but the doctors treat me as though I am seeking drugs. I am seeking help and they act as though my pain is not as bad as I portray it to be. I am tired all the time. I find myself depressed alot and then I feel guilty because at least I am better than I used to be and a whole lot beter than some others. I do try very hard and I am active. I get outside every day even if only for a few minutes. I can't live on this tiny stipend they call disability and I need to work. I am so tired of doctors treating me as though I am a drug seeker. I'm so glad there are others speaking out and a forum for us to talk. I will pray for all of you.

Machelle

22 May 2009, 21:23

My dahlings on the pursuit of finding your relieve for the pain from the fms, oa, ra, or other diagnosis.

All I know is that those of us with these various disease's/diagnosis need to stick together and fight for relief and to be taken seriously as we have survived and keep going despite our pain. Some day's it's almost impossible for me to get out of bed because the pain from fms, ra, oa, or a migraine. Yet, I like most fight to find solace.

may the healthcare community along with people in general learn that just you can't see a disease doesn't mean it doesn't exist.

hang in there and one day there will the new and better drugs/treatments for all of us.

Jeanna

19 May 2009, 00:44

Wow! How amazing are all of you fighters out there! I am astonished at the people that suffer so much debilitating pain on a daily basis and for years like myself.

I am 52 years old and have been in pain for 30+ years, more than half my life. I no longer know what it is like to be without pain. It has become my companion and shadow, always lurking about, relentlessly so. I have bilateral carpal tunner syndrome, for which I have had 5 surgeries for release of median and ulnar nerves, {3 right hand, 2 left hand}. I suffer from spondylolisthesis, FMS, CFS, OA, RA, obesity, clinical, chronic depression, degenerative disc disease, fusion of several bones sections of my spine, and problems with my bones in my neck.

I am a fighter, as so many of you are, as you can't be anything else if you want to survive these types of life styles. I look normal, but feel anything but. I have spent years making others feel comfortable around me because people just have this thing where they want to fix you, or they just feel you are lying about it all.

I have found that the medical institution knows no more about pain than I do in all my years of constant research to keep myself up on any new therapies or medications. WE must be advocates for our own health and lives. If a doctor does not believe you, then get rid of them and keep trying until you find someone that can atleast try to understand what you are living with and is willing to work with you for your own best interest and health.

I have seen hundreds of doctors, done the pain management classes and taken more drugs than most of us ever knew were even in existence. It took years for them to finally do the testing on my spine and by then there was so much damage that they put me on morphine without any fuss. I guess that was to appease the fact that had I been properly diagnosed, perhaps some of the damage could have been averted. Well, if I, coulda, woulda, shoulda can't undue the damage and crying about it most certainly isn't going to fix it. I also take vicodin for the morphine does not kick in right away and some time the pain is just unbearable and needs near immediate attention to prevent me from running down the street naked, pulling out my hair and screaming at the top of my lungs capacity.

I also take prozac, an ulcer capsule, a high blood pressure med for my chronic kidney disease and when I just can't take it any more and just have to get some sleep I will take elavil. It is one of the old trycyclic antidepressants that don't do sqwat for depression, but is really good for pain and adding on the pounds. I can't get anymore epidural shots in my spine as the last one did more damage than good and the steroids have begun to damage my bones. Oh! gotta love those steroids! You can actually pretend to be normal for awhile with those, but they are really a false sense of wellness, for they only mask the pain and damage to your body, they heal nothing!

I wish I had some magical words to give you all, but I don't. Having been in pain for more than half my life has only made me good at hiding it until I can get home where I can let it all out. It is my belief that I am here by the grace of God, as I have tried to check out a few times, only to discover the chronic depression that has actually been a part of my life since childhood. All I can say is DON'T GIVE UP! Giving up is not an option! We much fight! fight! fight! the darkness that comes from being in pain all the time. no matter how dark it gets you can always find that pin prick of light and we must crawl towards it until we reach it and begin to dig our way out of it. Embrace the good days and don't get down on yourself for giving in to the pain on other days. Sometimes giving in to it is all we can do, and just keep praying and hoping for a reprieve, until the next round.

I also feel we must research our diagnosis as well as the medications that we are given. We must be knowledeable about the treatments we are given and let our physicians know that we are not just allowing them to take over our lives.

I have often wondered why my life made this most unexpected turn and how I even ended up here, when I use to tell myself that I could never stop working like some others do. Well I was given a huge wake up call and it entailed learning that the mind can tell us we can do anything and the body can refute and object to it all if it so desires.

Exercise is a great, great pain reliever and spirit builder. I found Curves to be simply fantastic, until my docs told me I would have to learn to exercise gently! That didn't even sound right to me...exercise and gently just never belonged in the same sentence to me, let alone paragraph. So I suggest to all that we try some type of exercise daily. Whether for 5 minutes of 50 minutes we need to give our bodies the added assistance of keeping it as mobile as possible. It is also real good for depression! i was in bed for what seemed like almost a year and I was sure I was going to die as it was impossible to do much of anything. Then I started adding little movements to my days and I started to get better in tiny increments. i am ambulatory now, though I can not stand for very long due to the deformaty in my spine now. I got a rollator, {rolling walker with a seat} and it gave me the freedom to leave the house again.

I go to bed tired, i wake up exhausted! But I wake up, so I must still be here for a reason, and as long as I am here, I pray to be able to do some good for someone in some way, each and everyday. It is a hard life and not for wimps at all as most of you can vouch for. We were selected for this lifestyle for a reason and I pray that I fulfill this reason by the graceof God and that others around me learn the importance of taking care of their bodies as well as listening to it when it gives out signals of pain.

God Bless you one and all. I pray God keep His angels camped around you all and hold you up when you feel you just can't do it any more.

Angels on your pillows, a stranger to this type of sharing, but I just felt compelled to share after seeing how open and honest so many others found the courage to be. I thank you for sharing your stories and your pains. It is very helpful to know I am not alone in this way of life. AS a matter of fact there are way more sufferers out there than I ever imagined. Peace be with you, and may your journey become a good one!

Eva

17 May 2009, 07:25

Hello to everyone. This is my first time posting to this site. I have been reading some of your posts and they sound alot like me. Here is a bit of my story...I am 42 yrs old. I have been suffering with pain for about 10 years now. I went through several "quack" pain management physicians until I found my Angels that I have been seeing now for a bit over one year. I have 2 ruptured discs in neck, 2 in low back, spinal stenosis, sacroiliitis, sciatica in low back/down both legs, degen disc disease, arthritis all over body, fibromyalgia, carpal tunnel & cubital tunnell syndrome in left arm that is requiring surgery soon, bipolar disorder (so I get depressed alot then manic alot), a heart condition and various other conditions. I take about 20 medications each day. If I truly let it, it does depress me to the point of not wanting to get out of bed!!! Oh, I failed to mention that my 81 yr old father is in the process of dying and me and my elderly (mentally unstable mother) must care for him daily because my 2 brothers are unable. One brother lives about an hour away and does come up one or two days a week and do yard work and household maintenance for us. That really helps but I told him I need more! Like I need one whole day off to myself each week! My fibromyalgia is kicking me in the butt! My other brother is in the Marines and not here but feels bad so he is retiring in January. He is a Captain. I hope he is making the right decision. I hurt everyday. There is never a day when I am pain free. I've learned that pain is just my way of life but with the pain mgmnt, its at least mnageable most days. There are some days though when I think I'm gonna lose my mind. I am at least blessed with a good husband who understands that I have these conditions and that I hurt. Alot of times, he takes over and makes dinner for me (mostly boxed or frozen, but that's okay!)when I am too bad off to do it. I am really blessed! God is a good God! Well, thank you for listening to me ramble. I feel so lucky to have found this site. God bless you and keep you all! ~~Eva from Louisville, KY

ELLEN

11 May 2009, 23:10

Hello, to those of you trying for disability keep trying and do not take no for an answer, you have to be prepared to be turned down at least once, but don't stop trying. Appeal and get a good lawyer who works pro-bono. Been there done that and I have been receiving benefits for 3 yrs.now. I had a very compassionate judge. I am on oxygen as well for an auto immune illness as well. Hang in there all. I sympathise with you and feel your pain.Aqua therapy helped me alot, not I need to find a pool that I can afford.

Pat Marquardt

11 May 2009, 15:17

I would like to get these e-mails. They are very helpful.

Donna

09 May 2009, 20:43

TO ELEANOR POHLMAN:

God Bless you, you poor soul!!! I am just 60 this month and thought that I had it bad until I read your story. How have you managed to hang in there? Does family assist and support you? If so, then that probably helps.
My only son, 35, abandoned me when he heard the word "Lupus". He said that I'm a liability to him and refuses to call me or come to see me. But that's ok. Up until last Christmas, I cried, called him, sent him cards, only to have them sent back to me unopened or hung up on the phone. After 18 years of nothing from his father (my ex-husband) they're now buddy-buddy and he doesn't need me---especially since I have run out of money. But he will get his from the Lord one day. I have Lupus, RA, FMS, Diabetes, panniculitis,osteoporosis, sleep apnea, asthma, a heart valve problem, various bone surgeries and am having surgery on 5/11 for adhesions from another previous surgery.
But YOU--what a woman you are!!! How could you handle all of that?? I will keep you in my prayers. I DO hope that you see this note. When I'm feeling sorry for myself, I will think of you. Again, you're in my prayers. Please feel free to write me at my e-mail address, dmf88@comcast.net.

God Bless you, Eleanor.
Donna

Eleanor Pohlman

09 May 2009, 16:41

Hi Evereyone!! I am so glad to know this column is here. It's my first time to be able to talk about all these evils that have decided to rest in my body. I am 64 y.o. widowed mother of 4(Ilost my husband inOct. Of 'o2 and a daughter in '03. from a heartattack. I am a victim of oa. ra. lupus,fm. and multiple stomach ailments. Severe heart disease.deterioating spine,spinal stenosis,and right now I am awaiting to get my P>E>T> scan in June to verify that my lung cancer is definitly gone. My battle with the cancer started 1 year ago in April. had surgery for removal of a nodule in my lower right lung andwas told that the cancer was gone. 3 mos. later a c.t. scan revealed 3 more noduals so I had 33 rAdiation treatments. 3months later I had 15 nodules show up all small so did chemo. On Easter I spent the day callling my family and frients to tell them that the c.t. showed all cancer was gone. Thank God for taking care of me and for my group medical care workers they all have had a huge part in my survival when a doctor told me I had 7 mos. to live 9 mos, ago. Please pray with me and for me that the PET scan is totally negative next, month. So pain yep its there day And night. I had a total rt, hip replacement and now need to haVE THE BALL REPLACED.BUT I'LL MAKE IT. ALL OF US WILL MAKE IT BECAUSE WE have fought the battles and lived to tell about. We are all survivors and will continue to be. I will pray for each and everyone of you we are tough and winners. We will make it. God bless each and every one of you and HAPPY MOTHERS DAY TO ALL.

Jan

07 May 2009, 17:12

Thanks to all of you who post, share, and bear witness to our common challenges...I am into my fourth decade with Fibro/Chronic Pain/Depression, etc. Here are some things I know: First, WE have to be the expert on our own health and symptoms and meds and providers. If a provider,acquaintance, friend or family member doesn't "get it", I put them OUTSIDE my circle of real people..and find another provider, etc. Keep finding providers; acupuncture helped me; when I moved, I couldn't find one, so I used a massage therapist; then anodyne therapy at OT...just KEEP ON KEEPIN' ON! What works for me today might not be it in 6 months. ALSO: read everything, make it your study time, to stay on top of info as well as support sites like this one. Even meds that worked once might not work later. Right now, my "good" place (everything is relative) is with Fentanyl, Methadone, Cymbalta, Lyrica, and Trazadone. (TRAZADONE made a huge difference in my sleep...which helpS so much else.) ALSO: I have made a commitment to get to my therapy pool or a Gentle Yoga class for 6 out of 7 days; everything else is scheduled around my exercise. I still come home and sleep longer than I exercised, I but I move better, feel better, and most importantly I think I am not as likely to get hurt from something simple like reaching, because I've stretched and improved my core muscles and upper body strength. AND I'm pretty careful about eating good food, like berries and mangoes and avocadoes and nuts...I limit red meat. My spouse of 24 yeaRs announced that since I'm disabled, my life is over and he was "done"...I have had 4 spinal fusions (one repeated because the first failed), a broken tailbone and severe shoulder injury from a bike accident. Life is limited, but the more I proactively plan and protect myself, the easier it is. I have a great team of Pain Clinic, Psychiatrist, Therapist, my yoga school (not easy to find a good one..and I cannot say enough about how much YOGA has done for me) and my community rec center and pool. And when I go to a provider, and say I'm working at yoga and swimming almost every day, they are not as likely to think that I'm not doing what I can to hold up my responsibility for my health. More important than that, after my separation has been my friends. They listen, encourage, cry, laugh, and keep me going. Family? Not so much. But I think we create our lives by finding our new "family" from people who value us. And I try not to let me relationships be one sided: I try to listen and be there for my friends, because I don't want a one way relationship.
I've been so low I couldn't figure out why to keep going, like many of you who have been so brave and selfless to share that very dark, painful thought. I might post like that again, and if I do I hope some of you will remind me that we have to keep going. There's an old saying "YOU DON'T HAVE TO BE PERFECT; JUST BE PERSISTENT". Try to find something that lifts you up, whether it's reading or needle work (my friend got me started growing orchids! What a sight, when the sun comes up...). Even gardening in pots instead of beds like I used to...and Netflix. I also like Huffpost's "living" section, which has good inspirational and self-help stuff on happiness and optimism, etc...So I hope that in some way, this might help someone...it helps ME to remember what I need to do, to stay focused on being as well as I can. OH, and one more thing: on a bad day, I try not to draw conclusions or judge myself, or beat myself up. I just try to rest, relax, and plan another day when I WILL feel better. Stay open to new options. Journal, to download heavy thoughts, track patterns, have a conversation with yourself...Namaste! (The Divine in Me honors the Divine in YOU)....

Fannie

07 May 2009, 09:57

I've had RA and FM for about 26 years but doctors didn't recognize the problem, they thought I was nuts. I complained about the constant pain in my neck, arms and shoulders and finally, a doctor sent me to a pain doctor, just to get rid of me or shut me up. I guess he figured if that one told me there was nothing wrong, I'd stop complaining.
Well, first, my neck is different than most people's, it has no curve, it's absolutely straight, my head sits on top of this straight stick and pivots around. Might be a good thing, as the muscles on the left side are 3/4 deteriorated. Just gone. So holding my head up, HURTS... C4, C5, C6 are self fused, but not straight. My lower back has the same problem.
He wants to put a steel rod in my neck to help support my head, but everyone I've talked to about it it says it made them worse. The neuros say I'm not a good candidate for surgury. I don't know what to do. And I get confused a lot and forget what I'm supposed to be doing or talking about.Any thoughts or suggestions?
I'm 65 years old, don't work, am widowed, so no sex is not a real problem, although I still have my sex drive. I'm not able to drive because I have macular degeneration and had a tumor removed from the optical nerve. The brain surgury was easy, but the paralysis of the left arm and the blood clot surgury on the right arm nearly killed me. I can now use both arms, but no strength and lots of pain. Constant pain all over my body. I think maybe my nose doesn't hurt. I take Garpentin and oxy-codone for pain, plus other meds for other problems. Still have pain but get to sleep 2 hours at a time.
My kids think I'm faking. Or nuts, Maybe I am.
I thought about killing myself but have too much to do before I could dop that, don't want anyone coming into my house when it's dirty.
Anyway, any help appreciated, and I'll be praying for each of you, I can do that in any position, can't I ???

Rebecca

06 May 2009, 20:49

Doreen; I read your story dated May 5, 2009. I was just like you in the year of 2007 suffering day in and day out with no letups. Had pain management on my lower back, did not make a dent in the pain. I could not even walk, sit, stand, lie down, roll over in bed. I was such a mess. But I took this pain until after consulting with many spine surgeons, then I finally said enough I can't stand this pain no more and I took a chance and had my back fusion but by a very young neurosurgeon from the University of Miami School of Medicine in Miami, FL. This was not an easy operation because I had the new laser surgery so it take longer for the operation to be complete. I was under for 6.5 hours, in the hospital for 8 days and then sent to rehab for another 8 days. I came home a day before Thanksgiving. I wore a flexible back brace for 4 months, but I have to say that the operation was a success. If I had to choose to do it again I would do it. It's better than taking heavy pain drugs just to num the mind because the pain is always there and never goes away. So I made the right decision. After I came home I was still hurting in my joints so I asked my neurosurgeon to refer me to a Rheumatologist that at least understands what RA is. So I have been under the care of the same RA since December 2007. I am a very positive person with a happy attitude, so I am so hopeful that my new medication I will be starting tomorrow of Rituxan at the cancer center. Then in two weeks another dose and then 6 months from then. Both my doctor and I feel that this will help me somewhat at least so that I can stay on my feet more than 10 minutes at a time and then perhaps I will be able to go back to work.
As for Lyrica it does take a while for that drug to work at least 3-4 weeks. I have been on it since 2005 so the past 4 years it has helped with my peripheral neuropathy which is constant burning feet and nerve ending damage not reverseable. I also have to contend with chronic obstructive pulmonary disease and Sjogrens Syndrome which is dry eye all from the RA. I also have Gerds acid reflux and severe skin condition. So in the last year I have been through the mill but I have to say to you and everyone else out there suffering from RA or any other type of Arthritis, that tomorrow can always be a brighter day. I myself take one day at a time and the moment I can put my feet on the floor when I awake up in the morning I thank the G-d for giving me this day today. I wish you all nothing but pain free days.
Rebecca

leigh

06 May 2009, 20:10

I was diagnosed with Fibromyalgia 14 years ago. I went to find out about having arthritis. I was diagnosed with chronic clinical depression for 26 years ago. As if that wasn't enough after working with so much else going on a life situation that led to PTSD. I have been determined as disabled. It's been a relief to know what I need to do to "trying to get better" I push struggling though all of the pain. I'm seeing a psychtriti (pls excuse my misspelling) for meds and a clinical social worker who helps me see through with open eyes.

I do feel empathy for everyone who has to live with chronic pain. From whatever...It's just not FAIR.

I swim at least twice a week. With the meds I'm taking it's still a reach for me. It puts me in bed for a couple of days then I go do it again.

And the weight whoa. This is not okay!

My parents are both Type II Diabetic. I'm not planning on doing that either.

So there. You are all in my prayers and positive thoughts.

Helen

06 May 2009, 19:19

I am so happy to know that others experience
the same kind of pain that I do from FM & OA.
I have had this pain for about 10 yrs but it
has gotten progressively worse over the years. I am now 72 yrs. old and was finally
diagnosed by a reumotologist last year. He
told me he didn't have a pill he could give me,he suggested that I educate myself on the
subject and try different things to see what
works for me. So far ibuprofen helps me some
but I'm aware that too many my cause stomach
bleeding. I get a massage monthly, but it
only relieves some of the pain for a short
period of time. I don't sleep well at all
and I do not tolerate pain medicine well.
Actually I don't tolerate any medicine well.
As I pray for relief from this awful pain
each night, I will pray for all of you.

Joan

06 May 2009, 17:32

I have had fibromyalgia for 20 years. I developed it after having a severe fall that injured my back. Then I developed Lyme disease which also aggravated it. After about 3 years of suffering and wishing someone would just shot me, I went off my meds, had pool therapy,electorstimulation glove treatment, and saw a chiropractor routinely. when I started the above routine, I was 36, had a 3 year old which I couldn't even pick up, and had the strength of a 80 year old women. Many days are still very bad, but I've learned over the years that even though I have bad days, I need to look at the light at the end of the tunnel: there will be good days ahead! I believe that the best treatment for fibromyalgia is massage therapy. This has brought me the most relief over the years, and is highly recommended by the European community. After WW11, many reterning veterans developed fibromyalgia. The US medical profession treated it as a mental illnes, however, in Europe, they realized that it was a physical condition and began treating patients with massage therapy. They are so far ahead of us in treatment for this condition. The question is what came first: the chicken or the egg. Did the pain cause the depression, or does depression cause the fibromyalgia pain. I believe that the pain came first for me. Once I came to terms with the pain and realized it was going to be my constant compainion on this lifes journey, I was able to see beyond it and take one day at a time, sometimes one moment at a time. My heart goes out to all of you who are suffering so greatly that you would want to end your life, but I hope and pray you will see that each day is precious, even if the fibromyalgia is causeing you great pain. I get through today, and let tomorrow take care of it's self. I have added a memory foam matress to my bed (bought it at Costco's) and it's about 4 inches thick, this seems to help with the pain from sleeping and allows me some relief. Taking a hot bath before I sleep helps also. Sometime even taking a small dose of benedryl will help me sleep on occassion. I think each person has to mix and match to see what works for them and never give up. Thank you all for sharing your stories. They helped me realize that I am greatful to be up and about, even if I walk a bit like a robot. I pray you will find success in your journey!

Kim H.

06 May 2009, 16:27

Hi this is my first time on this site, and I am so glad I found you. I too am suffering from FM, I also have a seizure disorder, thyroid problems, arthritis, chronic pain due to R shoulder injury @ work, asthma,early menopause, and of course depression, plus more. I am on Lyrica, Gabapentin, Clonazepam, plus Phentenol for pain, plus numerous others. I am in sooo much pain ALL the time, it never goes away. The meds keep the pain tolerable but not gone and on bad days all I do is cry. My husband trys so hard to be sympathetic, but I know he gets annoyed with me for complaining. I have no sex drive and my hips are soo bad that when I try to be intimate, I am in extreme pain for days, and am unable to walk. I have dry mouth so bad that my teeth have badly decayed and I am now looking at dentures- I'm only 47. I have been suffering for 10 yrs. My back and neck are so bad that I can no longer sleep on my back or I am unable to move the next day, so I sleep (when I am able)with a body pillow propped up so I can't roll over. This puts even more pressure on my already sore hips and if I turn over and sleep on my right side my shoulder becomes impossible to use and pains me unbelievably. At first no one believed me when I told them how tired I was and this all developed right after my shoulder injury-that's a whole nother story, and very tramatic for me. I've had 8 injections into my shoulder to try to aleviate some of my pain-but the injections are worse than the shoulder pain, plus it makes the shoulder even worse. At times I can't use my right arm, and the weight gain is embarrassing! I've never been so big, I'm afraid to see people I used to know and those that I do know because most of them don't know me that well, and don't understand what's wrong with me, and they stare. When I've had seizures in front of people I am horrified later, and don't really want to see them again, as I'm so embarrassed. I've become so forgetful and feel like I'm missing things that are going on around me. That drives my family nuts! They used to try to understand and would listen to me when I needed to talk but now I can tell no one wants to hear me anymore-I feel alone. When my husband travels I am terrified as I'm usually all alone as my kids are older and don't live here. My daughter is married and has her own children to worry about, and my son is in a realtionship and expecting a child this fall.
I have thought about suicide but I know I would never act on it, as I love my family so much I would never want to hurt them like that, plus I want to see my grandchildren grow up and get married,etc. I truly understand what Carol, and Cherry said, and I know how you feel. This is the only place where I know that when you say I know how you feel, you really do! I experience everything that most of you do some more than others, but I haven't worked in years and wish I could so that I could contribute to the family again, and maybe my husband and I could do things together. I really MISS the intimacy, I know that there's other ways to be intimate, but I just want my life back so badly it makes me cry. That's one other thing I've noticed that I am more emotional-I cry at the drop of a hat it seems. I'm so glad I found you, I was beginning to think I had no where to turn. I wish I could meet some of you and sit and talk and maybe we'd become good friends and not feel so alone. My extended family and friends just don't cut it, and I'm lost without my husband. I told him he can't die first or I'll be right behind him, cause no one else would take me or love me. He takes care of me and really tries so hard to be understanding, but he's so busy with work, that I get impatient when the house gets messy and the dishes don't get done, I still have to cook or my husband would burn the house down - but he has to lift the pots as I can't lift the weight of them with food inside. But he tries to keep the house up too, but when he doesn't I get upset and do things myself and land up getting hurt or being in sooo much pain later that I pay for it for days later. I can't garden anymore or work in the yard, forget exercising it's too painful although I still try to go for a walk every other day with my dog. She lets me know of on coming seizures but she is self taught not trained, but recently she was declared "vicious" because THEY say she bit the letter carrier. However my husband was right there holding her and says nothing happened, but they wouldn't believe us and say that she is a threat to people and other animals. We have 3 cats, a bird and a guinea pig and she has never tried to hurt them, plus she's never gone after anyone that she knows or doesn't know. She loves kids, I think the letter carrier just had it out for her, or something happened at the neighbors house where they do have a vicious dog, and she didn't notice an injury till she got to our yard. There were signs posted on the property to warn people that there was a dog so that burglars wouldn't come here. But she had to reach over the fence. I still don't believe anything happened. Now I don't think I can get her registered as a service dog. Anyway off topic. Does anyone else have problems with emotions? It looks like the drugs are causing problems with memory or is it FM. I live in Canada and although I lost my fight getting monies for my work injury, I was lucky enough to qualify for disablility, although it's not much.
I'll write again soon.

Rebecca

06 May 2009, 07:32

This is to all who have shared their stories. It is so important and top priority that each and every one of you contact your local politican, send them an email about the up coming Arthritis Prevention, Control and Cure Act of 2009. These senators and other congressmen will be lobying this coming fall for the funds needed to continue with the research required to find a cure for all these auto-immune illnesses. This bill would:

All of you can send an email message as this listed below:

The Arthritis Prevention, Control & Cure Act of 2009 would:
Enhance the National Arthritis Action Plan through support to federal, state, and private/non-profit efforts to prevent and manage arthritis. Provide federal support for initiatives to educate the healthcare profession and the public on successful self-management strategies for controlling arthritis. Bolster federal juvenile arthritis research activities focused on better understanding the prevalence, incidence, and outcomes associated with juvenile arthritis, and establish an education loan repayment program to create incentives to enter the field of pediatric rheumatology, and provide training grants to universities supporting pediatric rheumatology programs.

I hope I can count on your support and urge you to become a cosponsor of the Arthritis Prevention, Control and Cure Act of 2009. Thank you, then insert your name.

If you need any assistance in how to do all this please contact me and I will be more than happy to help all of you.
Thank you, Rebecca

BLESS YOU

05 May 2009, 23:52

WHY BECAUSE I LOVE JESUS CHRIST?

CHERRY

05 May 2009, 23:46

This is for CAROL,honey I know what you mean about your husband! I have NO sex drive at all!! My husband is a saint for putting up with me,I feel like I am losing my mind, I don't think about suicide, I pray the next day will be better!I am in pain and the doctors want give anything,stronger than norco. I have a high torlorence to pain meds,what would knock most people out i am still waiting for med to work. I have everything all have mention on this page! plus High blood presser,I just want to be free from the pain! I am depressed I never go out the house everyone thinks its in my head,wish they were right,i would have brain surgery HAHA had to throw in a little humor.
I will write more again,right now my hand and wrist are hurting,bad!
Carol I wish there was away you and I could talk personal I would love to talk about our condition hint(husband) I truly feel and love you all, God will help us, so please hang in there!
Love IN Christ,
Cherry

Patricia

05 May 2009, 22:01

i am 47 i been dealing with OA and Fm and nerve damage in my back and neck , and carpel tunnel in both hands, can't have surgery on my back i been all kinds of meds . know on lyric , methadone , muscles relaxer and antidepressants meds . i have a hard time sleeping at night can't stand or sat for ten minutes without been in pain . i been out of work for 8 years and been trying to get my disability for 7 years i don't understand how some people can get there disability with no problems . weight gain also foot problems just all mess up i just keep on praying that they will give me my disability because i know i got to live with these pains the rest of my life .

Carol

05 May 2009, 21:55

Hi everyone-

It is good to share with others. The life we lead is hard. Dealing with pain every day. I have FM, DDD, OA,diabetes, asthma. Trying to live a somewhat normal life is almost comical cause it feels like a lost cause. I am a nurse and dealing with patients who complain of pain but are able to walk, run, exercise just really bothers me. I feel like I am being punished and frequently want to give up. I take multitude of drugs just to try to work. Neurontin gave me brain fog so that was out. Lyrica caused water retention after 8 months. Nothing seems to work. I am blest to hear I am not alone. We all have lost a lot in our lives. I miss the little things like gardening, playing with my grandchild, dancing used to be my greatest love... they are all put to the side so that I have enough energy and tolerance to be able to work. Money to live is a priority. My husband is my biggest helper driving, cooking,cleaning taking up the slack. He is my cheering squad on really down days, but.... My big personal question is for those of you in a relationship. The pain is bad enough but it is really aggravated with physical intimacy. Takes me two days to recover. This issue is causing a big strain between my husband and I. He is trying to be understanding, but.... Anyone else dealing with this? Any solutions? Aside from doping myself up to the max for a romantic eve? Loosing my relationship would be the last straw with these diseases.

Rebecca

05 May 2009, 20:29

I feel for everyone of you who are suffering from FM. But you all really need to stay focused and positive. In 2004 I came down with severe buring feet I went to see a doctor who said I was nuts. After saying goodbye to him I decided to research and seek out other doctors that might be able to give me a diagnosis. After numerous Nerve Functions tests, x-rays, blood tests the only thing my blood test showed was I had a high elevation of Rheumatoid Arthritis. I was told by several doctors that almost every person has a high RF factor, but just because I was suffering from burning feet that did not tell them nothing. In the meantime, I suffered until I saw a real doctor at Miami University School of Medicine and he gave me Lyrica in 2005. I have been on Lyrica up until now. I take 50mgs in the morning and 200mgs before I go to bed. But I also take 100mgs of Zoloft which is an anti-depressent. I take this because it takes the edge of my 24/7 horrible pain. I was neglected from 2004 until 2007 and mis-diagnosed because of the illiterate doctors we have to face to see if they can at least give us some relief. I did my research. I interviewed 5 spine surgeons in 2007 and then I chose one from Miami University School of Medicine who performed a fusion in November 2007. Three weeks later I was finally diagnosed with severe Rheumatoid Arthritis. I feel that I am in good care now, but my progress is very slow because it was in late stages when it was found. I have been on Embrel, then Orencia and now I am starting Rituxin. I am praying that this makes an impact in my disease.
Rheumatoid Arthritis is a systemic Auto Immune disease. It just not cripples your joints but it attachs and distroys other parts of the human body. I have developed in the last year and a half chronic COPD that is Chronic Obstructive Pulmonary Disease. I have Sjogrens Syndrom of the eyes, Gerds disease, gall bladder problem. I had two knee operations in the past 12 months. I just finished using prednisone eye drops, but I have to take Restatis twice a day for dry eye.
I am an Ambassador to the Arthritis Foundation. I involve myself with helping out the organization and it's not because I have this illness it's because that there are 46 million people who suffer from arthritis and 1.3 million have RA disease plus there are 300,000 children who have juvenline arthritis and they don't have the proper health insurance to go get the help they need so they end up in wheel chairs.

I manage my disease with a positive attitude every single day. I keep very active in the pool and while I am sitting in a chair I have a small bycicle that I use for my feet. I can hardly walk, sit or stand for longer than 10 minutes at a time. I have a rail in my bed which helps me to roll over if not I can't because of this condition. Oh I forgot to mention that I just turned 68 years young. I refuse to let this disease get me down. Go to the arthritis link.

https://www.kintera.org/faf/donorReg/donorPledge.asp?supId=0&ievent=292170& lis=1&kntae292170=FD42C676DF7647C7A5F8971C994DF030&team=3389952

Stay well and positive.
Rebecca

Vickie

05 May 2009, 20:17

This answer is for Faye.
I believe that the fog is from the FM. I don't take a lot of medication and I have the fog all the time.It also affected my work,(memory) I was not able to work any longer. after about two years of medical history with my doctor( seeing her regularly
every few months)I was able to get her to take me out of work. I received State disability, and applied for social security disability and was approved. Just make sure you doctor has documented every thing you tell him or her. I have FM and OA.

Linda

05 May 2009, 19:52

How does everyone else put up with the sleeping issues ? If I get 2 hours sleep a night, Im doing good. I cant put up with this much longer, Ive tried sleeping pills, antidepressants, Yoga, but the pain, and nerve sensations, keep me awake, inspite of the drugs.

Angie

05 May 2009, 18:09

I am 47 and have FM, and my doctor perscribed 40 mg. of prednizone every 4-5 days. (doctor says there are no side effects with taking large dose and letting it do it's job and then leave out of my system for 3-4 days). I also use ibuprofin on days in between. Between these meds, and regular exercising/stretching. Pain relief is impossible a day or so before my period, and during rainy days it's worse also. But at least I'm not bedridden! It's good to have my life back!!

Letha

05 May 2009, 14:43

I was reading all of your statements have FM and OA and there are days I just feel so miserable I'm better on warm sunny days but pain is with me everyday. I take lexapro, soma, for my fm it helps. I have to be careful because I have COPD also. I feel so isolated most of the time. My grandchildren visit and they cheer me up I spend most of my time inside I try to get out driving bothers me I make sure I go to church emotional it makes me feel better even though it takes me two days to get over the trip. I feel better that I know that I'm not crazy cause I have pain all the time. thank you for sharing your stories

faye

05 May 2009, 14:37

I have Fibromalgia,OCD, IBS, Gerd, I take Lyrica,clonazapan,tramadol, lamictal and other medications. The minute I took Lyrica I loved it. Yes weight gain is a problem, however I try to keep a handle on what I have gained by going to WW. My question for you all, anybody is does it interfere with your work? I have lost several jobs because of not focuaing, forgetting things. Is it medicine or Fibro Fog or both? I will try one more job then I need to see if it is possible to get disability or not. I must have some income coming in.

Lourdes

05 May 2009, 14:28

To Sandee and others who questioned why Lyrica is advertised and the warnings not stated sooner. Look at what an FDA Blackbox Warning meand and if you look at other meds that have you'll see you take many of them. It does not necessarily mead it's bad or should be off the market. It just means that you should be aware of this finding post-market. I think puting these warnings on pain killers or meds used for chronic pain or depression is non sense. Of course you are going to be depressed if you are in pain and it is not unheard of that an antidepressant does not work for certain people. If they listened to us and helped relieve our pain then the warning would not be necessary.

Vickie

05 May 2009, 14:07

I have had FM for about three years and
OA for about 4 years. I have gained so much weight in the last three years. The pain from my FM seems to have settled mostly in my hip muscles which is making it hard for me to walk, and the pain in my body makes it hard for me to exercise,I am sure that is part of the reason for my weight gain. Does anyone else have the same problem with their
hips like I do? My family just thinks I have gotten lazy. I have tried a lot of the meds mentioned but they do not seem to help, and
they mostly me me sick to my stomach. So now I only take Darvocet and ibuprofen on really bad days.

Shelley L. Wirth

05 May 2009, 13:49

This info is depressing! Thanks for letting us know what's going on, though, it does make me feel better to be informed. I have fibromyalgia, chronic back and neck pain, and am bipolar. I used to take gabapentin and depakote. I now take Lyrica, topamax AND lamictal. Depression is constant and the idea of living like this for the rest of my life, (I am 51) brings suicidal thoughts. I see my regular Doctor, (a D.O.) weekly for my back and neck. I also have a wonderful Phychiatrist who I helps me keep the negativity at bay. It's true, until you have these conditions, you can't understand. Thanks for allowing us to share.

Jenny

05 May 2009, 13:36

I feel both encouraged and sad after reading these posts. Sad to hear so many people are suffering with their fm the way I am, yet encouraged to know that I am not alone in thinking that my pain is what is making my depression symptoms worse. I agree with others that doctors just don't listen to their patients. I think if our doctors had to live with our pain for just one day of their lives, they certainly would listen to us and treat us as patients and not us dollar signs. It is hard to see past, around or through the pain when it a part of my life every single day. But it does give me some hope to know that others are dealing with the same issues.

Connie

05 May 2009, 13:34

This is my first time reading all of your comments, while sitting here in awful pain and wanting to cry knowing that I'm not alone in the way I feel with this FMS and OA, etc. etc. etc. I've had this for so many years and each year seems to be 10 times worse than the prior year. I too have tried many different meds. Am now on vicodin because I had a total knee replacement 3 months ago. I remember when I could tolerate pain but I sure don't anymore, and suicide, attempted twice. I hate what I've put my family thru. I'm amazed that they still love me. I too hope that the med field will someday soon find a med to help us all. Thanks for reading. Connie

Cindra

05 May 2009, 12:56

Everyone seems to have similar stories and ailments and meds they are on. I think more information should be given to the public to educate them. I am going to my physicatrist today for my regular 3 month visit and have been on Cymbalta initially for the depressions for 4 years, then this past was diagnosed with the Fibro - I have always had suicidal tendencies and extremely depressed at times. I don't think the drugs cause the thoughts, they were there before the meds started - but I am wwondering if anyone can tell if they raised my Cymbalta level from 60mg to higher, if it might help - but I've put so much weight on this past year, I'm afraid to add more meds that add weight. Can't do the exercises like I used to-so fatigued all the time after working all day, I just want to crash when I get home and stay in bed till work the next day. I'm tired of living this way...I pray constantly and for all sufferers of Fibro - no one really understands unless they go through it. Thanks for listening.

Shirley

05 May 2009, 12:35

I have diabetes, fibromyalgia and take 150 mgs of Lyrica 2x a day. I have constant pain but nothing like I do without Lyrica. I wake up all through the night because of my pain. Who wouldn't be depressed? I'm living with my pain and I'm exhausted all the time but I don't think that it's due to the Lyrica but the fibromyalgia/pain instead.

Dee

05 May 2009, 12:22

I take gabapentin, tramadol, etodolac paracetamol and amitriptyline for fibromyalgia, and I do not have suicidal thoughts, but do get quite depressed with the pain. However, it wasn't until I started on the amitriptyline that I felt a little more relief from the pain than with the other pills. Fibromyalgia is difficult to cope with, but I have learnt that it is better to laugh rather than cry, and that's how I get through life!!!

Karen

05 May 2009, 11:17

Has anyone out there heard of and tried the Guaifenisin protocol for Fibromyalgia promoted by Dr. Paul St. Amands? I know of a lot of FMS sufferers who have been helped by following his program very strictly. I've had FMS for many, many years, but it was tolerable until after I had a car accident in 2005. Ever since then I feel so much worse; am on vicodin & Cymbalta in order to function at all. I also have OA, DDD, & DJD, & have gained wt due to too much pain to exercise much, which makes matters worse. (My diet is excellent) I've tried the Guaifenisin & plan to get back on it. What's the Arthritis Foundation's viewpoint re: Dr. St. Amand's program?

Jean

05 May 2009, 11:16

I have had severe fibromyalgia and CFS for over 5 years. I had reached the point of becoming bed-ridden. I was taking Lyrica, Tramadol, Cymbalta and a whole bunch of other meds I can't remember. And as the parent of two elementary school kid’s, life was a big blur due to the severe nerve pain.
However last year I got into a clinical trial and had a VNS (vagus nerve stimulator) device install in my chest and neck. It looks like a pace maker but the leads go into my left vagus nerve (on the side of my neck). It sends out an electrical impulse ever 5 minutes (the frequency and amplitude had to be fined tuned with many post op checkups). It's just been one year since the surgery and I am feeling incredible. I still have some joint pain but no where like before. Also the fibro fog is completely gone!
I actually went back to grad school and am pursing a teaching teacher - something I couldn’t even contemplate a year ago.
I hope that this treatment gets FDA approval in the next 3-5 years because it is a god-send. I got my life back and I would recommend this surgery for everyone once it is FDA approved.

Joanne

05 May 2009, 11:02

I was diagnosed with fibromyalgia nine years ago. I am also asthmatic, diagnosed when in my forties. I have rheumatoid arthritis and my thyroid just stopped functioning when I was in my early forties. To add to all of that, I had polio at age nine months and developed Post Polio Syndrome at age fifty. My problem is that these conditions all take different approaches to healthy living. PPS tells me that if I exercise, I will lose what muscle strength I have, more quickly. Arthritis and fibromyalgia say I should do stretching and light exercise so I can maintain flexibility and what limited movement I have. I take no regular pain meds. because I have a high pain threshold but the constant ache and the muscle spasms are getting to me. I don't sleep well and I am never pain free. Is there a miracle out there for me?

L Bourque

05 May 2009, 10:49

Hello everyone.

We all seem to be in the same boat. Originally, I believe I started with fm during the 50s and 60s...always got po pooed by doctors. My recent gp diagnosed me with the fm, cfs, myofascial, etc. degenerative arthritis (from orthopedic doctor).

I have been taking cymbalta for about 4 years now. When I first went on it I thought it was a miracle. Now I have had a positive AND blood test and will go to a rheumatologist per my gp's advice.

Today it is damp and dreary. I will be 76 in September.I even took today off. I work part-time for a Title V Program because my 3 grandchildren live with me. This spring and (also last spring) have been quite unpleasnt. I taught Yoga from 68 to 91...and had no fibromyalgia symptons. Life happened..drama..and here I am.
Thanks for all the posts
namaste
L Bourque

unpleasant.

Ann

05 May 2009, 10:36

I too have fibro, OA and a variety of bone and connective tissue issues. Was diagnosed with fibro in 2002 and have been on a variety of meds. Was born with congenital hip dyplasia and not diagnosed until I was 36. Had hip re constructed in 1988 and in 2005 a total hip replacement. The reconstruction kept me from a total replacement for 16 years BUT it also caused problems with my spine. I have degenerative disc disease in my neck and also L4, L5 and S1. Had a severe case of spinal stenosis that meds, injections and therapy could not help. Finally in 2007 I had back surgery to release the nerve root. Now I have spondololythesis and if I screw up my back it means fusion. Not to forget connective tissue my right rotator cuff was repaired in 2001 and my left in 2004. I have a tendency to shread the fibers in the tendons or I fell when my hip was giving out and tore off 2 tendons. Taking OA into consideration, having fibromyalgia and knowing that just DAILY activities can cause a day or days of pain is frustrating. I have meds but they can only go so far. No real "happy days" when a person wakes up in pain and discomfort on a daily basis. I just accept it and do what I can. Just wish there was a cure.

Rich

05 May 2009, 10:32

Kim...I find that caffeine helps me for a short period depending on the amount of course. My doctor at the Cleveland Clinic suggested avoiding caffeine but I still play around with it when I need to get my exercise in. Let me know how caffeine affects any of you. Thanks.

Kim

05 May 2009, 10:26

I have been taking Lyrica for diabetic neuropathy for a couple of years now, and it works great! I don't have FM, but I know the agony that it creates. I do have Rheumatoid for which I take Cymbalta, Prednisone, Methotrexate, Plaquenil and Leflunamide. I'm supposed to start Remicade soon and then get off Methotrexate, Plaquenil and Prednisone (yea!!). My Doc says that I should see "real results" from Remicade and I'm praying that he is right.
My main issue is the isolation I find myself in. I don't think I'm depressed because I'm not hopeless or helpless but noone seems to understand the toll that chronic pain takes on your life and it feels like my loved ones just don't want to hear it anymore.
One question has anyone found that drinking diet sodas have an effect one way or the other?

Paula

05 May 2009, 10:22

I have had lupus now for about 9 years, and it seems to run into fibromyalgia also. Lately, I have been in pain, and I do get run down easily. I have been on Cymbalta now for a few years, but I don't think it helps at all for the aches and pains. I am thinking of asking for something else. I have terrible muscle spasms in my upper back. I am an LPN so the physical work kills me sometimes. I am also on Depakote, Carisdoprol, Hydroxychloroquine, Revatio (for Raynaud's, and Ritalin to help me focus. I am so sick of taking so many meds. I wish I could stop them all. I know I need to stretch more or exercise, but with 3 kids and working it is hard to fit it in.
Anyone here have lupus also along with the fibromyalgia?

vickie l bailey

05 May 2009, 10:17

i know what you are saying,i was 17 yrs old wheni frist started hurting so bad, i was already overweight&,i had surgery for that,but,it really made it start showing its tail.i would go to the dr. they would tell me they couldn:t find anything wrong with me.i have layed& cried for days at a time.i got hooked on the pain pills& had to go rehab.that was the only place tried to find out the problem.god,since me a wonderful doctor in hattisburg ms.he took one blood test& told me i wasn:t crazy.he started trying different meds.until he got me where i could finally walk around without crying all the time.if it wasn:t for the good lord above i don:t know what i would do from day to day.i ask god, to please,help anybody,&everbody that has fibromyalgia. vickie!

vickie l bailey

05 May 2009, 10:16

vickie l bailey

05 May 2009, 10:16

vickie l bailey

05 May 2009, 10:16

Cindra

05 May 2009, 10:13

Jan,
Can you tell me more about the thyroid med Armour with T3 T4 - I haven't heard of that, whereas I am taking two separate pills. I'm working full time, but its so difficult. These meds all make me nauseus, constipated, weak, I also have osteo, partiuclarly my nknees have no cartiliage left and I have had my rt large toe replaced four times now - that is shot. I wish there was a local support group that would meet in the evenings (we have one that meets in the day) to talk to others with these problems. God bless and thanks for listening.

Rich

05 May 2009, 10:12

I feel all your pain. I am a 33 year-old male into personal fitness and FMS has ruined my life over the past four years. I have lost everything but my loving wife and the meds mostly do nothing for me. I am having some luck with the Lyrica/Cymbalta combo...but not as much as at first. I have been unable to hold a job and I am dependent on percocet and methadone and that alone has become awful..awful! I want my life back and I do not know how to get it back. I also have suicidal thoughts from time to time which is completely out of my character...I have never thought of acting on them but they have presented in times of intense pain and despair that only those of us with FMS and spine problems can relate to...does anyone else feel like someone pours fire down your spine at night? It is the most intense suffering I have ever felt...and I have felt alot of pain with a double-fusion back surgery due to a hereditary condition. I just wonder if the surgery led to the FMS? I suppose I will never know. Again, I feel all your pain.

Jan

05 May 2009, 10:01

I have had fibromyalgia for over 15 years. Of course I went from dr. to dr. trying to find one who believed my symptoms! I've been on so many meds...most of the anti seizure meds, muscle relaxers, pain pills, you name it. Tried Lyrica and no help at all. I do take Paxil and have for over 10 years. In October I got off of the Vicodin, Flexeril, Ambien and Lyrica. After a rough couple of weeks, I feel better now than I have in many years. I switch between arthritis strength Tylenol, Ibuprofen, and Naprosyn during the day for my pain. The pain level improved 80% off of the vicodin. Pain pills eventually make the pain worse.
I take Melatonin to help with sleep and I take vitamins, Magnesium, my thyroid med (Armour) and calcium. I did some reading and if you have thyroid problems and fibro it is suggested to use the Armour thyroid med. It is not a synthetic and has both the T3 and T4 in it.
I know that I still have to watch how much I do because do too much and I'm "out of commission" for a few days. I don't work outside of the home....couldn't do it with the fibro and arthritis. I didn't think I could make it without the pain meds and muscle relaxer but I am!!
God bless all of you reading this.

Mary Ann

05 May 2009, 09:59

It is great to know there are others out there in the same boat. I have spent so much time and money trying to find that one pill that will help make life bearable. I have so many side affects I gave up. Besides my Fibro I had back surgery last October for a herniated disk and now have neuropathy and permanent nerve damage to my left leg. And the pain is still there all the time. I am currently only taking Klonopin and 800 mg Ibuprofen 3 x daily to help with my symptoms. I was prescribed Vicodin-but can not tolerate it. I feel so alone and isolated with my pain. I think I understand the depression with this new information on the drugs prescribed. I want to work-still do part time-but it is getting more difficult everyday. I hope something will help.

rene

05 May 2009, 09:54

I also have FMS,OA,OP,DDD and fused discs.I tried Lyrica for a few months and actually hurt worse.I stopped it on my own.My doctor has rearranged my meds. several times,but I still hurt and feel miserable most days.I have known about my FMS for 13 years.I am not able to work any longer and have been trying to get my disability.I pray they find something soon for all of us.I had planned out how I would get rid of myself a few years ago.....

Cindra

05 May 2009, 09:29

Sounds like everyone is in the same boat, I have tried and am now taking: Klonopin, Cymbalta, Duragesic patches, Hydrocodone, Vit B12, Vit D, cholesterol meds, and 2 different meds for my Hasimoto's disease. I'm so tired of doctors and meds, I'm also bi-polar - I used to think everything was in my head, still wonder sometimes, will things ever be the same - i'm only 47 but feel like 65 - I've put weight on like crazy, can't get it off, which also depresses me - Now I'm going tonight to be fit for CPAP for sleep apnea...Is there any help - everyone just looks at your weird.

Carole

05 May 2009, 09:25

Oh- unless you have it, you don't know the agaony- I also have arthritis- so between the two, somedays- especially cold, rainy ones, are unspeakable! I am allergic to many drugs, so limited to what I can take. I work full time as a special education teacher- many days go home after a 10-12 hour day and collapse. I go to a pain clinic and am limited to what they can do for me. I have two fused disks inmy back from the arthritis but refuse surgery. I don't know the answers for us.

Doreen

05 May 2009, 09:24

Hi. I have had fibro now for 15 years and am totally convinced the body gets worse due to the aging process and the pain becomes more intense. When the muscles become so weak they cannot hold the spine in place DDD occurs. Along with the arthritis ( I have OA of the spine extremely bad) along with the rest of my body. Lyrica does nothing, I take 2 celebrex a day and have been on them so long I don't believe they are working anymore. I have 3 spinal injections, and am corently going to a chiropractor who gently adjusts me. It takes the pressure off the hips but within 2 hours the hip goes out again. The muscles go back to there original place which is in the wrong area. More info is needed on those who have had fibro for more then 10 years and the aging process. I am in pain every day, I stretch all during the day. But cannot go anywhere I guess the next step is back surgery. They must come out with a pill that is both a muscle relaxant and a pain pill in one. I have tried everything and cannot take any antidepressants because of the side effects. Get that advertisement off the TV for lyrica it is a joke.

lisa

02 May 2009, 02:31

i've given up even going to doctor's because none of them seem capable of listening to me and realizing that i've had this body for 51 years and i know what's going on with it. they prefer to believe that i'm a hypochondriac. i don't believe in taking illegal drugs but i'm actually considering medical marijuana for my fibro.

Alicia

27 Apr 2009, 19:06

I to have used Lyrica when it first came out it worked for a little while and then stopped working.I too have tried all kinds of anti-depressants and none have helped. I'm also bi-polar,with fibromyalgia so I have tried just about every pill out there still with no relief. Hopefully one day they the doctors will come up with an answer to help all of us who suffer with fibromyalgia.

Karen

27 Apr 2009, 05:32

Thankyou, Thankyou, Thankyou!!! I knew I was not crazy. Knowing it was the meds I was put on brings alot of relief. I too was hospitalized w/suicidal thoughts. I am so disgusted with the medical field not one of my doctors said these meds could/would do that to me in fact they kept telling me "everything was all in my head" well I guess it really was but was brought on by them.

Marlise Rains

24 Apr 2009, 20:36

I did a clinical trial study last year (2008) using Lyrica(50mg) and Cymbalta(60mg)one a day, and so far those are the best 2 medicines for my fibromyalgia.
From pain 10 a reduced to 1 or 2. Some days I need a tylenol, but very rarely.
I don't have suicidal thoughts,so far. I am taking lyrica for more then one year alone, and with cymbalta about 7 months.
With lyrica, I can sleep good. With Cymbalta I can live with less pain.
I still believe that is very important do exercice and watch what we eat also.
And deeling with fibrolyalgia gently.

Teresa Wells

23 Apr 2009, 16:25

I'm currently on Lyrica abd Klonopin. In the past four months I have either tried to commit suicide or had suicidal thoughts more than usual. I spent time in 2 psych wards because of suicide. I am going to a pain managment clinic to get off most of the 12 medications that I'm on including the above drugs. I wonder if they are the reason I tried to kill myself or had thought of doing so. These drugs are dangerous even though they also help relieve FM Pain.

Angela

22 Apr 2009, 08:35

I take Paxil for my Fibromyalgia and I feel wonderful. I've been taking Paxil for about 10 years and it still works. My daughter in-law was just diagnosed with Fibromyalgia and she now takes Paxil and she's doing wonderful.

Vicki

21 Apr 2009, 17:21

I tried to take four different anti-depressants and felt worse due to all the side effects. I have given up on them and am in the process of going back to my anti-anxiety tablet. My system is so sensitive, and I cannot go through the nausea, fainting, vision problems anymore. I have fibromyalgia and I'm tired of the trial and error. I am no longer working and cannot afford to be a lab rat.

Linda

16 Apr 2009, 11:32

Itake gabapentin 2700mgs a day I take Cymblta, Amitriptylin,Advair. Nexiun and Tramadol, all for my Fibromyalgia and asthma.I ahve gained weight like mad and some days are still hard to get through work and still have so life at all.I feel like I am between a rock and a hard place.
Sorry but this is just how I feel. And yes there are days I wish someone would just hit my car so I can just stay at home.

Sandee

08 Apr 2009, 02:14

Fibromyalgia is so nebulus--I am not surprised with the findings. Why is Lyrica advertised and the warnings of such a drug not clearly stated? The pain with fibromyalgia is very real. It is defeating, because the medications are almost worse than the disease. I look forward to new and better drugs for all with arthritis conditions.

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Fibromyalgia Drug Warnings

FDA warns of suicide risk for 3 fibro drugs and 20 other medications

Fibromyalgia Drug Warnings

FDA warns of suicide risk for 3 fibro drugs and 20 other medications

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