1/15/09 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.
Here is how I cope with no pain meds. I do everthing in short bursts. I still cook, but it takes me all day to cook something. I get up and do something for 15 minutes then rest for 30. I can't hold a book for long so I invested in a MP3 player and a membership to a audio book club. I listen to books and fall asleep. I used to read and fall asleep. I have several on line friends who have FM and we check in with each other at least once a week. We keep each in good spirtis and let each other vent as a way to handle the stress. I listen to meditation podcasts to meditate. The pain is too much present to let me meditate on my own. Lyrica caused me to have eye problems. Narcotics had me falling every other day and did nothing but made me more tired. No pain but lower quality of life. I have learned the the pain I have doesn't mean I am injured. So I check in with my pain 3 times a day. Otherwise I just ignore it as much as possible. I still dance, but very slowly. I sit and dance with my upper body a lot. I try to laugh daily. Play online games and knit socks. I find if I can do something that requires my full concentration the pain gets pushed back.
I was diagnosed with FM in 1997. When I got the FM pamphlet I cried. It listed all the problems I have had as long as I can remember. When i finished crying, I felt so vindicated. I am not crazy after all. I am a loving and supportive mother grandmother and wife. My family is so important to me, they are what keeps me going day to day.
I hope this helps. Linda
I am a 51-yr old memaw with 7.9 grandkids & 6 kids. I've been through 3 husbands (currently on #4, but that later) and as for the medical profession - I currently have a GP, an ortho, a GI guy, a surgeon, a Rheumatologist with a couple of other assorted docs & PAs thrown in. I have Acute/Chronic Osteoarthritis & Acute Fibromalgia, (plus several others I'll name later) *cheesy grin*
When I was 17 I had my first migraine. I also had an appendicitis attack so severe they almost didn't get it out in time. I got married, had my first two babies, divorced, met a new guy, got engaged - and had an accident that almost killed me. That was 1985. I was 25-yrs old and made my first will. It was very cathartic. From that accident I have suffered pain in various parts of my body, migraines that lasted for days (11 was the longest), had anxiety attacks, was so self-conscious that it would take a book to deal with, had the WHOLE sigmoid portion of my colon removed (diverticu-litis - losis?) whatever. For the next 26 years I have suffered with pain, nausea, migraines, been told it was in my head (as in imagined), been to psychiatrists, psychologists (married one - stupid me), therapists, massage therapists, etc. I was lucky in that I finally found a GP & an orthopaedist that knew I wasn't faking it and that I really didn't want to take any drugs, even the drugs they were prescribing.
I eventually started having extruciating pain from seizure-like cramping in my toes, feet, arches, ankles, & calves. Dx'd w/Peripheral Neuropathy (seizures in lower legs) - really. There is such a thing. I had surgery to remove arthritis in one knee & one hand & one shoulder (hmm all on the right side) and therapy that should have helped but didn't.
It took 21 of those 26 years for them to diagnose me with Fibro. I almost lost my job in 2010 due to a new complication. Falling asleep at my desk. Described by one boss as 'sleeping on the job'; and diagnosed by a Pulmanologist as - Idiopathic Hyper-Solmnalence. In other words, I fall asleep (better described as PASSING OUT) at the drop of a hat. No warning, not necessarily sleepy, just out. I'm on meds for that too.
And Goddess forbid I take my pain meds during the day - that makes me even more tired.
So every day after work I go home and try to sleep for about 1 hr (or at least rest). Just depends on how much pain and just how worn out I am. Then, due to the nap (which can last way longer than an hr due to the pain), and the pain from the day that has finally set in, and I can take no more and am up for hours afterwards. 2-3 a.m. comes around and I finally lay down and try to sleep.
I had someone just this week marvel that I managed to get through my days with such an upbeat attitude.
I have my belief, my loving husband (I thank you God everyday!), my children, my grandchildren, a few very dear friends and a wonderful set of docs who HAVE put things down on paper. But, unfortunately, I can never retire & go on disability for Fibromalgia. FB is an auto-immune disease. And if they let SocSec pay for that, then they are going to have to start reimbursing folks Back-pay for years worth of all of the OTHER auto-immune diseases. Aids is also an auto-immune disorder and that reimbursment alone would break the bank.
I have a multitude of other ills, but they all eventually fall back under the A-I tree. See your doc, find a good Rheum doc, and a pulmo guy. Get neurologist & a good GI guy and make friends with ALL of them.
Smile. Yeah it hurts, so what? So does everything else. I'm not going to let this beat me. I am more than my ills & weaknesses. I am, me. Keep going!
My soul swells with thoughts of so many of you in unanswerable pain. You have my thoughts, my prayers, my empathy, my hope for a better future with BETTER doctors and endurable medicines that can perform adequately without gnarly and disturbing side effects.
Shall I tell my lengthy tale of frustration, incompetent doctors, diagnoses happy clinicians, abusive psychiatrists, lazy psychologists and my stint in a crisis center where I was placed amongst those who were profoundly mentally ill?
Perhaps you will relate to the tale. Perhaps you will become pissed off.
Perhaps you will laugh, which would bring me great joy
At 26, I was a humble 98 lb hardworking girl who looked like "kiss my ass" barbie.
I worked construction, heavy equipment. I operated a car hauler, a bulldozer, a backhoe, dumptruck, bushhog. I roofed houses, rehabed them. I managed 16 rental properties and a 160 acre farm. I was a foreman of a goat dairy and an emu farm.
I cleared land, dug out problem trees, roots and all, placed culverts, moved above ground gas tanks, by myself--men just aren't cautious aroung hydraulics. I placed cattle guards, installed septic systems. I was afraid of nothing. I hiked the Ozarks alone or with my dog, of course I had a factory built 12 guage with a pistol grip that could blow a hole the size of a coffe can in a refrigerator door.
I felt like the world was mine. The trees, the caves, the abundance of naturally occuring springs. The plant life, the hardwoods, the first flowers of spring and the wildflowers rare to find except upon exploration.
I had a friend with a goat dairy and a whole pack of great pyrenese. Walking amongst them with my hands spread, I could touch them all. Many nights, I spent the night by my friends at the river, surrounded by the white drifts of these magnificient livestock guardian dogs. Yet, they slept my me. Me safe as in the arms of someone who should loved me. Magical. Memory to carry for the rest of my life.
Jumping out of my car and greeting the dogs, goats, horses gave me peace, comfort, acceptance, a home.
Within days, the rapid heartbeat and nausea hit. Figured I just had a bug. Driving to the next town over, I lost my vision and only say green and black. Panic set it. I wheeled my truck off the road and barely missed a house. At 4 am, I woke the family, gave them $20 for a phone call and contacted my husband who cussed me for the inconvenience. He came and got me though and I was able to follow him.
Following this episode, I had many visual disturbances, like living in a round fish bowl. Sick to my stomach, I kept trying to live my life. Encouragement came in the form of my husband in such terms as "get busy living, or get busy dying", "you're a hypochondriac ", "your lazy", a lamp over the head. I could no longer approach the dogs.
Yet, in addtion to my other responsibilities, I loaded cut firewood by the cord for 6 cutters.
Panic disorder set in. My ex convinced all friends and family than I was a drunk, hypochondriac, seeking pity and attention. All this for the woman who used a pry bar to remove rock from the emu pens and dismantled decrepit buildings.
After many episodes of racing heart, pain throughout my body (complainer, attention seeker) panic attacks, anxiety, inability to swallow solid food, not being able to make it to the bathroom without laying down, racing heartbeat upon staning, fatigue, I took a job haying with friend. He told me I was sick. He compared me to a farrier friend who went mental because of Lyme
Disease. Everyone thought he went crazy or was a drunk. It took and episode with a car full of people, and his loss of reason to see him to hospital in Little Rock. He no longer practices and a farrier. He has FM and few friends. He was abandoned because he did not 'cowboy up'. He was weak , in pain, and had difficuly with conversation and memory. He was a most popular farrier, now he has no horses to develope relationships with, he cannot know their individual fits and conditions. This was his life, he was in demand and excellent at his job. People and horses, even the most difficult loved him. It was assumed he went crazy. It was assumed he turned to alchohol. Where are his friends now? His loyal customers? He can no longer drive, read a map; activities which require memory and concentration. He can no longer bend to file--it takes time, and it hurts him. He can't remember horse to horse and the individual needs of each. This dude was a successful mega-stud very popular with the ladies and the horses. A gentle, compassionate man.
Back to me. I became very ill. No solid food. 34 doctors who gave me antidepressents, xanax (wretched side effect), emergency visits--until I wrecked my car and called a DR. I asked for a Lyme test, he took many, all positive. Life not better since then. Doctors dont want to give women meds to help with anx, won't consider fibro, even had one spit in my face, accusing me of wanting to depress my central nervous system. And the pain--I wish I could count he drs who rolled their eys at me. One even suggested that I was "spiritually sick" and not praying in the proper way and that I needed to find God.
That really helps when you cant sleep for 4 -5 days.
My late Grammy, my mother, brother and sister in law have all been convinced that I am a drunk and will not return my calls or speak to me.
Finally, I have found a great doctor(please let her stay great) who assured me that for the past 4-5 years my frontal lobe has been scrambled by my lack of sleep, pain, stress, anziety. Who needs family like that anyway.
MY mother says it herself "she is a 'stand by your man woman'". Even though my father scewed me, spanked my for no reason (bend over and drop them to you ankles, don't look or I'll beat you harder than you can ever imagine and you will not sit for weeks). No reason. Behind me, legs aching, ready to fall over I could hear a "ooooh, oooh". Then came the whipping with a belt. If you cry, I'll hit you harder. Paraphilia anyone?
Left home 3 days after my 13th b-day. Childrens homes and ward of the state after that, No clothes, dental care. 2 years without eyeglasses. So much for the state of Wyoming.
Eventually, I left. Bought a mobile home a car and was attending college. My head and back hurt. My knees.
Evemtually I accidently wound up in Arkansas. Homeless, hungry. I was given a fishing pole and a windowless, doorless dirt floor shack to call home, and I was grateful.
The ticks were so thick up there that once, I thought I ran into a clod of dirt.
When reality struck. I used a pair of scissors to remove ticks, skin and all. Soon, They became a part of life.
I ask all of you with Fm or suspected FM to be tested for Lyme Disease. I was sick for 2 years, undiagnosed and suffer the consequence.
This note has been hard. I've checked it over and over and I'm sure there are still errors. Spelling, syntax, grammar, punctuation, etc., I apologize. I think, after writing this and reading your letters, that I might be getting an inkling of what "fibro fog' is. I share some of my history because research is showing the kids from abusiv and crappy homes are more apt to develop FM.
I Thank you.
Now that I have Fm, it is an answer well received. Again I have questioned my mind and imagination. This forum, your comments on your conditions, medications (especially the trial and error) help my to have an informed choice and provide more territory for me to research.
I am grateful to finally have an answer. It gives me an adversary. I also have arthritis, but the fibro takes center stage and will continue to do so until I find the spices, supplements, medications and support,
I have always loved a good fight/challenge, and pain, fibro and all that goes with it inspires me to challenge myself in every way I can and to hopefully share and learn from others.
I could sing praises to my heating pad.
Welcome conversationalists.
Hey, you, Rebecca Miceli---want to talk? Promise, no woe is me,
Shana
I just want to say when i read your post your an inspiration.
I have had Fibromalgia for some time now.
Have tried everything for relief it see
Your post gave me hope that if you have had it that long, and have dealt with it all you have into your age now....I am inspired and i can be as positive as you. Even though you ended it by labeling yourself unpleasant.
There is nothing pleasant about fibromalgia. It hurts. It is unpleasant.
I understand and completely feel for you and how you sounded in your post.
I hope you feel better.
As for me...I hurt daily,and do what my Dr. says to do. I have good days and bad days.
All in all,I am grateful and try not to look at what i can't do anymore...but i am yet grateful, for it has humbled me and made me stronger in other ways where my body isn't.
I focus more on spiritual,things,family,music,excersize and the like rather than what i can't do.
Your post inspired me to know if you did all that in your life time than I'm on the right track with how i am.
None the less.. i wanted to say my thoughts about your post and i hope one of your grandchildren or children or family members are helping you out some.
Ty for your post here.
God Bless You Sincerely.
in Peace,
melinda
while on medical leave recovering from surgery due to a work related injury.
This past year, at the suggestion of a family member, I went gulten free for 6 months, then saw my primary md, she dx celice disease, I thought it was strange that no one ever mentioned this possible explaination for my constant gi symptoms in the 17 years since my dx, being gluten free has made a significent difference in how I feel every day. I also read the NIH research oon Vit D deficency and decieded to take supplements, which seem to help, on my md's advice, after the celice dx, I also started taking Vit B daily, she was very spefic about Vit B2 400mg per da.
I still struggle with daily pain, insommia, poor memory & will probably never work again even though I am told that I am not disabled, baised on my md's statment that I can work 3 4hr shifts per week, no one in the area will hire me as the hospital where I worked has a monoply on almost all of the health care providers in the area.
I hope this provides some help to someone who reads it, it has helped me to write it. Good luck everyone
I currently take the Generic of Ultram for pain, Zoloft for depression, Zanaflex which is a muscle relaxer and add Arthritis Tylenol along with the Ultram when the pain is very bad.
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!
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!
*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.
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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.
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
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.
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!
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. :-)
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
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.
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.
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
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
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.
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.
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!
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
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)....
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 ???
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
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.
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.
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.
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
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
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.
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
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.
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.
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.
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.
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?
Anyone here have lupus also along with the fibromyalgia?
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.
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.
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.
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.
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