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Explaining Fibromyalgia to Other People

Q. What is the best way to describe severe fibromyalgia pain to people who have never had it? When I describe my condition to friends and family members, they often respond with a wrinkled brow as if to say "So what's really wrong with you?"

A: Before I answer this question directly, allow me to say that you are not alone in your distress. Many people with fibromyalgia have experienced doubting looks or comments from family members and friends about the pain and symptoms of this disorder.

There are even a few doctors who continue to question the "realness" of fibromyalgia pain. This skepticism arises from the fact that the health-care community is not yet able to fully explain what causes or perpetuates the pain. Of course, that doesn't make the pain and other symptoms of fibromyalgia less real for you.

In general, your explanation to others about fibromyalgia should be straightforward and uncomplicated. You might say something like, "Fibromyalgia is a rheumatic disorder that causes muscle tenderness, pain and fatigue." If the other person doesn't understand, you might make your explanation simpler, such as "Fibromyalgia is like arthritis in the muscles." Of course, this explanation is not entirely accurate, but it should be readily understood. You might also obtain some literature on fibromyalgia, such as the Arthritis Foundation's guide Good Living with Fibromyalgia, to share with family and friends who would like more information.

You may also direct people to the "Focus on Fibromyalgia" section of this Web site where they can learn more about the condition and its treatments, as well as how it affects your everyday life.

Additionally, you might help others understand fibromyalgia better by explaining in clear language how it affects you. Be careful to avoid complaining, but be honest and open about the symptoms and how they affect your daily function. If friends or family members offer, you can then tell them how they may be able to help you (or not help you). In the end, honesty is the best approach.

Kristofer Hagglund, PhD, Psychologist

Sandy Boone

10 Jan 2012, 12:38

MIGRAINES -----what helped me after years of ending up in the ER a couple time a month was CRANIAL SACRAL MASSAGE.......since I had this I haven't had a migraine since. It was like a miracle for me. The spinal fluid, sometimes, becomes blocked and can flow like it is suppose to, CSM helps to open that channel up when performed by a trained (more credentials the better) therapist. UPLEDGER INSTITUTE has a list on their site where one can put in their zip code to find ones in a person's area.

Here is a video by Dr. Montoya of Stanford Medical School describing Chronic Fatigue Syndrome and what one is dealing with when they have it. It is good to play for those who DON'T UNDERSTAND!...............ttp://www.youtube.com/watch?v=Riybtt6SChU

JenniferC

28 Dec 2011, 12:23

Jennifer, I completely understand. I started having symptoms at 21 after having a very active life before that. I am now 30, and have learned how to deal with it. It is a permanent disorder, and I have accepted that I must manage this for the rest of my life. That in itself makes it easier, because you start to try to find ways to make life easier. Pace yourself. I can't clean hose for 3 hours straight anymore. I must clean a little, sit and rest for 30 minutes, and then begin again. It is an all day thing usually, and I just deal with that. Naturally, because you may end up cancelling events anyway, I rarely tell my husband or any other family or friends that I will be at any event FOR SURE. I tell them as long as I'm feeling ok I will be there, but can't promise anything, because you never know until that day. I take Lyrica for the fibro. It does help. Yes some people gain weight on it. You need a rheumatologist to do your 21-point exam to get your diagnosis. I about jumped off the exam table when I had mine. Also, I didn't even get a diagnosis until maybe 2 or 3 years after my symptoms started. I had many of the other wierd symptoms that go along with fibro such as Urinary Tract Infections, short-term memory loss, migraines, and many other things that led dr's to believe I had an autonomic nervous disorder. That wasn't the case, and after my diagnosis it took several months for me to fully believe it. The only reason I did believe the dr. is because the lyrica helped alot and after reading about the fibromyalgia I recognized I had many of the symptoms. I also have degenerative disc disease, bulging discs in my spine, and arthritis in my SI joints. So, for that I take Nucynta (a pain-reliever) and Methocarbamol (a muscle-relaxer). You must also work extra hard on your relationship with your partner. Make sure he/she understands your disease. Make time for them and time to nurture your relationship and always, ALWAYS try to keep a positive attitude. My husband and I have a great sex life, but he knows there are times when I am in great pain and cannot be active whether we are talking about a hike, sex, going out to dinner, or whatever he may want to do. Always give him a rain check if you can't do something with him, and be sure to follow through. Also, write everything down, as you never know if fibro-fog will hit tomorrow or even an hour from now and you forget what you need to remember. That is my advice from a young person who has lived with fibro as well as other chronic pain conditions for almost a decade now. I refuse to let fibro dictate my life, however I have learned to live a fibro-friendly lifestyle. Good luck to you all as we strive to live a good life despite our fibro.

Amanda

26 Oct 2011, 23:51

A few weeks ago I had an emotional breakdown because of the constant guilt trips I'm put on about my illness. Why aren't you taking vitamins? Why aren't you taking anti-depressants? why, why, why! Am I responsible for this illness? I have done so much and have tried so many things only to either stay exactly the same or get worse. Especially at my place of worship do I get this judgment! I listen to every service whether I'm there or not via the phone, but yet to them I'm not loyal and am not doing enough.

25 Oct 2011, 19:16

Last time I was on here was Feb. Since then I've been fired because of my medical probs, but they won't say that officially. I was told behind closed doors so no one else would hear and I wouldn't have a leg to stand on. Except for the no insurance problems (now down to 1 doc) I think it was the best thing I could have done. Enforced retirement. Huh, I'm still on most of my meds - Savella has proved a good thing - I recieve them via samples from my doc. I have lost about 40 lbs and it has helped. There are a lot of websites to go to that can help you with prescriptions so look them up! I hope all are doing well. I still hurt all the time, but I'm doing better emotionally. Hugs to all . . .

JJ

helen heuser

23 Oct 2011, 18:02

thanks for all of you on this page. ive got arthris alsospinal problems and and fybo im in pain also 24/7.i wish all of us could find a cure of some sort.some scientist some where.first time ive been on this page i found it by accident.i dont feel so alone.now ive found you peaple.from helen in the uk.

Jesi

14 Oct 2011, 15:36

I used to say it's like the worst flu you've err had but after learning more about it I tell people " it's a debilitating neurological disorder. My nerve endings are are hypersensitive ad consequently I feel sensations especially painful sensations more intensely than others." Also I take carisoprodol 350 ( Somas) for muscle spasms and hydrocodone 10mg for pain 2-3 times daily as needed. Grew up watching my mother subcumb to fibromyalgia and lupus, became determined that it will not keep my from my passion which is being a cook in a restaurant.

Jennifer

10 Oct 2011, 12:00

I am only 19 and have been diagnosed with fm (finally) For a long time doctors kept sending me to psychiatrists saying that it was all in my head and that it must be depression. I have been feeling this way for a couple of years and the fact that no one would listen or really help me was frustrating and made me angry, which everyone attributed to teenage angst. Anyhow I have tried gabapentin and it made me EXTREMELY ill and tried Cymbalta for one night and the very next day I felt extremely depressed for no reason and contemplated jumping off buildings, so I guess the Cymbalta is a no. :/ My rhum doc says that I have fm but is treating it like it is a temporary disease. Is that true? Everywhere I have read never says anything of the sort. I am now just taking a cocktail of supplements including 5htp and am feeling slightly better, but still overall am in constant pain. Parking at my college is horrid and I often find it hard to get to class at all because of the walk, I just have no energy to hunt for a spot, park, and then go all the way across campus to class. Sometimes I don't even go shopping when I need to because I am in too much pain and am too exhausted. Idk what to do anymore. I want to have energy for my fiance and to not feel pain when he hugs me. I feel like a horrible spouse because I'm not meeting his needs due to lack of energy, pain, and the fog that I feel like my head is in. I know this really bothers him. Sorry for venting to y'all, it's just idk where to go or what to do anymore and it not only hurts my whole body but my heart aches because I feel hopeless.

TMarie

06 Oct 2011, 11:41

I am at my wit's end trying to explain to my husband "what is wrong with me" when I don't feel good, have no libido, ache absolutely everywhere, and feel like I just want God to come and get me already.

I have always been happy, upbeat, etc, but I am finding it so hard to keep my chin up without support from my family. I am on Celexa, which seems to help with my mood, but does nothing for the pain. The stress is so bad, my doctor just prescribed me a third blood pressure med. I'm 41, not over weight, just completely stressed out.

I'm exhausted, every muscle in my body hurts, now have costochondritis, eyes are blurry, my balance is off, I'm weak - still working full time and going to school full time at night, raising two kids at home, and two in college from my first marriage that won't speak to me because they don't like the idea of having an imperfect mother.

I'm venting here, but I know by reading your stories that there are others out there who know what I'm dealing with, and I am tired of being tough and pretending like there's nothing wrong with me to make everyone around me feel like they don't have to care.

I take care of everything for everyone, and when I can't do it anymore, people - especially family - get angry with me. How do I explain to them that I need a break? I don't even sleep at night. How do I stop this vicious cycle? I can't keep going ninety miles an hour anymore...

Bon

04 Oct 2011, 10:56

I want all to know that TOPAMAX IS THE DRUG OF CHOICE,FOR ME. I THINK THAT EVERYONE SHOULD GIVE IT A TRY! PLEASE ASK YOUR DR ABOUT IT!I tried to get my mother's DR to get her on it & he said he never heard of it. How lame! If your DR says that he hasn't heard of it please ask him to look it up! This may be your key to being PAIN-FREE OR CLOSE TO IT! I WAS PUT ON it for seizures & I noticed that my Fibro pain wasn't as bad. Then as the DR increased my dosage for my seizures my pain lessened more & more. So, I finally, decided to stop taking my pain meds for Fibro.all together. I am just relying on the Topamax & occassionally Tylenol. You may have seen in magazines that TOPAMAX IS ADVERTIZED OR PAIN!
PLEASE,PLEASE, TRY IT! I WANT TO HELP YOU IF I CAN! WHEN MY FIBRO WAS SO TERRIBLE MY DAUGHTER SAID TO ME, "I WISH I HAD MY MOTHER BACK." IT WAS SO SAD, NOT BEING ABLE TO PLAY WITH HER...I STILL CAN'T DO EVERYTING, BUT I AM SO MUCH BETTER. MY OTHER DAUGHTER THOUGHT I WAS JOKING WHEN I COULDN'T EVEN CUT MY BAKED POTATO! MY HUSBAND HAD TO LET HER KNOW,"NO SHE REALLY CAN'T DO IT." TODAY, I CAN CUT EVERYBODY'S POTAOTES...LET'S ALL GET BETTER!

Chocoholiclady

01 Oct 2011, 06:02

Martha, I've been in the same situation. Don't let it slide. Get couseling as soon as possible! Also, Lyrica is not the only FM drug available. There are drugs called Cymbalta and Savella. Lyrica had bad side effects for me and went from 128 to 298.7 lbs in less than six months. Cymbalta is what I am currently taking. It helps but not really enough. I'm not sure if anything will. Cymbalta and Lyrica were originally just for depression but FDA finally approved them...Lyrica first...and later Cymbalta...for treatment of fibromyalgia. Savella is the newest and only for fibromyalgia...a first. But Savella is not in my budget and not covered by my Medicare Part D drug plan. In addition to getting counselling for depression with suicidal ideations I got put on several anti-depressants until they found a combination that worked. If finances are a problem try to find someone who does income based fees or someone compassionate enough to see you for discounted or "pro-bono" until the crisis has passed. God Bless.

Martha mendez

25 Aug 2011, 09:46

Hello fm family, I've had fm for 10 years thought I only had oa all over body, then that's not right impossible to be in muscles too, rume said I had oa all over also fibro, spinal stenosis, neoropathey, reynauds, ibs, carpal tunnel major depression, and more crap! Finally gave me Lyrica a miracle for me for about five years now I've had fibro flare for about a month nonstop
Pain and I really just want to die, do not feel I can go on anymore. Lyrica isn't working anymore I guess - people don't understand, I can tell they, fam are bored if I talk about it, I really need help as I really am getting very suicidal, I'm sorry I don't want to make all of you more depressed and I'm so happy for all of you that have found help. I feel it's useless for me. Good health to all of you. Thank you all for letting me vent.

Nancy Gillette

20 Aug 2011, 10:22

I'm 66 & have had Fibro for 18 years,I wish Florida would approve medical cannabis so I could take it to sleep. I have tried several medicines but what does help is Flexeril, 325 mg Iron pill, and Tramadol HCL daily. Now if I could only get a full nights sleep I think I could function like a normal person.

Leslie

15 May 2011, 20:47

I am thinking of trying the medical cannabis as well, I would much rather use it than the man made medicines that give me so many side effects. We recently got it approved to get the card that makes it legal. I figure its worth a shot ????

Steve In Denver

21 Apr 2011, 21:14

I am one of the few MEN I know of who have this terrible illness. I cannot work more than very occasional part time. I have ED. I cannot maintain a relationship. Libido is shot.
The pain is intense.
I use Medical Cannabis to help with all my symptoms, especially at night. I am so lucky to live in CO where it is legal with a card.

Sara

19 Mar 2011, 23:08

Thank You to ALL of you!!!! I feel soooo much better knowing that when you try to tell someone what this lovely fibro is, that they also probably have it! That happens so much to me, so annoying! Anyway, I have been diagnosed for a year and a half now, the pain is unbearable at times, especially in the morning...Good luck to all of you...and thanks for making me not feel so alone.

02 Feb 2011, 17:07

Hi everyone,

My situation is much the same as Jean Ann's although I don't take quite as many meds. I deal with osteoarthritis and spinal stenosis along with fibro. The biggest thing that helps me is a swimming pool. I took several sessions of the Arthritis Foundations Slow and Easy stretching and strengthening aqua classes. They are fantastic. It is low impact, slow stretching movements from the neck down. I now do this program 3 times a week on my own at my local YMCA. Without it, I have more frequent fibro flair ups. I highly recommend this aqua program!

01 Feb 2011, 11:41

Hi, i too have fibro, add pain from a car acc that crushed my rt hand, 5 resultant surgeries, and acute oste-arthritis. I have an ortho doc, a reg doc, a neur doc, a pulmonologist, a rhum doc and I can't remember all the others. I have had pt that didn't work, massage therapy that did (my therapist moved to another state - pooo!), and pain pills galore. Cymbalta, Lyrica didn't work - trying Savella now. Gabapentin worked for the problems with my lower legs & feet (severe spasms) but I have to take flexeril w/it. I have high blood pressure, thyroid problems, fells asleep at work and almost lost my job - now they don't trust me! I HATE THIS!!! I have trouble with words, migraines, and I'm sometimes afraid to hold my baby grandson for fear of dropping him. Wow, I didn't realize that I was so angry. Thanks for providing space to vent.

Anita G

09 Nov 2010, 20:50

I have be dx with incomplete lupus and fybro. for the last 20 years at least...It started out as lupus and then they couldn't make up their minds if it was lupus.Then the Dr said he thought most of it was fybro...So I was started on pain meds and flexeril...
This year the dr tried me on all the new meds for fybro, lyrica,cymbalta, savalla.
Well, none of them worked they just made me sick...Savalla spiked my blood pressure over 200/100 and went to hospital over night. so if anyone has blood pressure problems don't take savalla!!! The only thing I have found to take for pain is ibuprophen and flexeril.
Flexeril helps my muscels relax at night and helps me sleep...now I take davocet along with ibuprophen and flexeril...so far it has helped and I can do more than I have. I also take prozac for depression and frybro... I tried to get off prozac because it makes me doopy durning the day, but had to go back on it for my depression. I have taken every pill under the sun and these are the ones that help me the most...

Jean Ann

09 Nov 2010, 14:43

This is my first posting and I anticipate it could get lengthy, so bear with me please. I am 60 and have suffered with fibromyalgia for years without understanding what was happening to my body. I also have peripheral neuropathy, idiology unknown. My internist told me that he didn't know if I had fibro or not, but he was going to treat me as if I did. I began the regimen of Lyrica, gabapentin, and Cymbalta (which I was already taking for depression.) I did get relief from the Lyrica. But despite fatique, I have chronically not been able to get more than 3-4 hours of sleep for as long as I can remember. Lorazapam, and a bevy of sleep inducing meds. were tried. I could live with the lorazapam, but had to d/c the sleep meds because I couldn't live with the "hangover" effect. Later, the gabapentin was replaced with Topomax. I also suffer from chronic tendonitis in my ankles which I have had to have injected with steroids periodically so I can walk. Over time my dosages of Lyrica and Topomax were increased until the "brain fog" became unbearable. My family was irritated with my lack of mental acuity and treated me as though I were not trustworthy. I hated the "brain fog". It made me feel out of control and was negatively impacting my life. Over my doctor's objections, I insisted on being titrated off Lyrica and Topomax. Soon after this was accomplished, I discovered that I couldn't tolerate the neuropathy without meds, so I went back on the lowest dose of gabapentin that I could "get by" with.

Earlier this year my mental health practitioner referred me to a rheumatologist.
It was very difficult to get accepted as a patient. Many, many blood panels were required and my numerous medical records from over the years were submitted. After a 5 month wait, I was been accepted and have now seen this new physician 3 times. Upon examination he immediately dxed me with fibromyalgia. I was put on Savalla, gabapentin and Cymbalta and ordered to Physical Therapy. I am very sensitive to medications and interaction between the Cymbalta and Savalla caused debilitating and scary side effects. My Savalla dose was lowered to 25 mg bid and Cymbalta was replaced by Lexipro. Now my Savalla is at 50mg bid and Lexipro is 20mg qhs. I also take Adderall XR 40mg, synthroid, lasix, Topomax, Nuvigil 250mg, gabapentin tid, colestid tid, nexium, Adderall 10mg in afternoon, Allegra XR,and diazapam qhs (prn)for muscle spasms. I feel like a walking pharmacy. I still have "brain fog" but it isn't quite as severe. My biggest, horrible problem is that I can never get anywhere on time, no matter what interventions I have used. I am not convinced that the Savalla is doing a whole lot for my pain. (I suspect this is a low dosage?) I have been told that you have to be on the Savalla for 4-6 months before determining its effectiveness. I "flunked" physical therapy after 3 sessions! It exaserbated pain in my back and hip. I had a major flare of lympedema in my legs and feet which sent me to a speciality clinic. While there, I learned of a special hospital clinic specifically for chronic back and neck pain. My (new) internist sent me there. They use the McKenzie Method, which is a combination of massage (heavenly) and teaching you exercises specifically designed to alleviate your pain. You implement these at home and learn ways in which to sit and do daily tasks so that they don't cause pain. I am very, very, impressed with this therapy! I have learned so much and gotten much relief!
I am hopeful that I will soon be able to return to "regular" physical therapy and begin the weight bearing exercises my rheumy wants me to do.

Recently there has been talk of sending me to a neurologist for more evaluation for the neuropathy. (I am not diabetic) I must admit I groaned a bit, because I sure don't want to begin seeing another doctor! If it weren't for my medical appointments, I wouldn't have any social life at all! LOL

Anyway, if you have waded through this mini-series, I feel the verdict is still out on the effectiveness of the "Savalla, Lexapro and gabapentin cocktail" I'd be interested in any suggestions, comments or advice anyone has to offer.

For me, the McKenzie Method Physical Therapy has been very effective. I also read that several of you take Provigil. I too used to take it. Nuvigil has proved to be much, much more effective for me. You may want to
talk to your health care provider about trying that instead.

I am certainly willing to lend an ear and support to any of you. It is a frustrating journey, this fibromyalgia takes us on. I have promised myself that I will take the time to find at least one positive thing to be thankful for each day. In that reflection I find that I am blessed in a multitude of ways. I try to concentrate on those and strengthen my determination that I am not going to let this disorder define me. I am in charge, and I am going to be the best "me" that I can be!

wendy

21 Oct 2010, 08:38

I have stills disease and fibro.was diagnosed with stills at 17 yrs old I am now 39. The pain was horrific and recently diagnosed with the fibro. When people ask what is wrong your right they dont understand the fatigue the pain all of it. I also have the forgetfulness the words come out backwards or too fast im thinking what i want to say but doesnt come out right it is very strange. didnt know it had anything to do with the fibro til i read this site thank you for the info.i take tramadol and savella. they help but still have bad days sometimes weeks. I am still working but it is getting more difficult the aching , fatigue and depression make it very hard to deal with the public. applied for ssd when i was 19 and was denied feel like i have no choice but to try to go in everyday with a smile and hope that my job will bare with me on my bad weeks but i know that wont last forever.all i hope 4 everyday is that they can find a medicine that can help. thank u for all your stories and thank u 4 taking the time to read mine

Jennifer Hardin

13 Sep 2010, 23:09

I have lupus and fibro. I was dx with lupus at six yr old.
Fibro is new dx. I am in so much pain I sleep a lot . My marriage is not the greatest, he is tired of having a sick wife all the time. Just found out all the foods I love is very bad for lupus. I know now there is hope , I.can get my life back .

Margaret Blackberry

26 May 2010, 16:46

Hi, Ihave just read your site i have been very confused for some time now as i have suffered with a lot of pain been back an forward from doctor ,chiropractors,physio,ect an never really had much ease thinking im going raging mad eaven to the point where i think that they think it is in my head an tell me that they cant do much for me im constantly taking pain relief after pain relief been on slow relies patches to finally find out that im suffering from this problem of Fibromyalgia(WHAT A SHOCK).Iam anurse aide an have been for 18yrs,an i have currently been off work for 5 weeks as it is getting harder an harder i am so scared as this has been the only job ive ever done an i dont no what the future holds i have agreat husband an he is so supportive,but i dnt think he understands an i dnt blame him i also have 2 fantastic kids 11an 13 an i feel so bad for them as it is astruggle just to go up the street let alone even a walk around the block as i always feel sore an tired i think they think im just lazy ive gone from an energetic person to oh it a hassle so im wondering if you or somebody could give me some advise on how to manage this beast.

paula Roberts

06 Apr 2010, 21:11

I have had fibro for over 15yrs. Latley I feel it is getting worse. The best way to describe the feeling is if you have the flu and it affects every part of you. I also have mixed contective tissue disease with symptoms of rhum and lupus. so pain is a constent think especially when weather changes.

JAN GARRETT

06 Apr 2010, 11:07

How do you explain this debilating disease to anyone that doesn't have it? I've tried but no one knows what your'e going thru if they don't have " fibro " themselves. I'm 55 and had pain as long as I remember, of course it was disbelieved. I've worked since I was 15 and yes back in the day drank my fair share plus others share if I could it. It didn't take away the pain but at that point you didn't care because you were still having "FUN". Maybe some day someone will come up with an answer for us all, I sure know alcohol wasn't a helping hand. The next day you not only had the fibro still BUT on top of that a killer of all hangovers. Now that is a reason for depression. lol You have to keep laughing or you will never stop crying. Find something each day to make you laugh , it feels good.I'm on disability, can't go camping, hurts too much, fishing hurts, I refinish furniture ,that hurts. Laughing hurts but I will not give that up , any more I do silly stuff trying to stop the pain so I usually end up laughing at myself, It makes me feel better, mindwise. You know?

Margaret Ryan

22 Feb 2010, 23:42

This is the first time I have come on to the site. I have been experiencing inflamation in my body and pains in my legs and also finding myslef being very tired for awhile. Last summer I went into the hospital thinking I had a heart attack and they said all I had was arthritis in the back. I also have a disc problem too. Depression and take celexa for years. Lately I would say my pain and fatigue has become worse and today I feel as if my knees, elbows wrists and shoulders are on fire. I had to get up and find out if I had arthritis all over my body. Thank you for the information. Peggy

Olivia

12 Feb 2010, 22:13

Hi there, I was reading all your comments and they made me really depressed. I have Juvenille rheumatoid arthritis, fibromalgia,costrocondritits,TMJ,chronic bronchitis and have just found out that a part of my lung has calcified,I am only 19 years old and was diagnosed when i was 14! It was really rough in the beginning i missed so much highschool i didnt think they were going to let me graduate,im in college now and dealing with it a lot better now. I just wanted to say that you can't give up you can't just keep thinking about the pain,IGNORE IT and just try and be happy.Be positive and stop dwelling on your diagnosis and live your life like there was no tomorrow. I know this is probably going to annoy a lot of you but i used to be so negative and when i changed my outlook it made things so much better. Just try it kay....

kathleen cappola

16 Dec 2009, 08:24

i get so angry at my family they make fun of me call me a pill head i was diagnosed with fiba in 1994 then put on disability my family will call and say call me back when you can make sense i would love for this desease and pain to make sense and why me to make sense i have given my mom a booklet you know where i found it used to pick up one of her dogs fecus that she found on the floor so i guess it was too much trouble for her to read i guess we are the only ones that understand thank god for my husband who drives almost everywhere and gives me unstopable support good luck and one day with as little pain as possable to all of you kathy

Debbie McIntosh

28 Nov 2009, 21:59

I've been diagnosed with Fibromyalgia a couple of years ago. I have severe migraines, and always in contant pain. I had to have my husband hold me by my hand to walk me to the door. Climbing up and down the stairs is very painful. I hope one day I will know what to take. You name it I've been on it. Neurotin, Fentanyl, Lyrica, Gabapentin, etc... to much to name.
I'm on SSD now, and people say I look great! They really don't know how I really feel though. I try to go on each and everyday with a smile and pull myself out of bed to be with other people. Thank God for SSD. It's a little bit of money.

T floyd

07 Oct 2009, 12:24

I have Systemic scleroderma, Sjogrens, Fibro, Raynauds, early chronic renal failure, asthma, insomnia, chronic severe pain, degenerative disc disease, dperession, anxiety, hypertension, I take 12 different medications daily. I was diagnosed 20 years ago. However I have been dealing with chronic pain since I was a toddler. I found a website that has helped me. The name of the site is www.butyoudontlooksick.com on this site there is an article I live by called "The Spoon Theory". I try to keep copies with me. I showed the story to my husband hoping he would understand. He still dosn't. I'm currently dealing with tooth loss due to sjogren's. Has anyone else dealt with this??

Rosanne Madeja

07 Oct 2009, 03:00

About 6 wks ago my rheum prescribed Lyrica. I only take 100mg at bedtime & it's a miracle. After 16 years of pain 24/7 my pain is gone. Some people have trouble with side effects or it doesn't help them, but it's worth a try.

Holly C

06 Oct 2009, 23:42

I agree... this site has helped me to know that I'm not alone. Even my Husband doesn't really understand. I absolutely hate describing what's wrong with me to anyone, I swear they all think I'm nuts! Sometimes I feel like I am. I was diagnosed a year ago, which took 15 years, and believe I've had Fibro since I was a child. I was always told that I was a hypochondriac. Besides fibro, I have TMJ, IBS, migrains, some problem with the L2 disk in my lower back,PMDD,carpal tunnel syndrome in both wrists, forgetfullness, and Osteoarthritis. Probably more to come, I'm sure. Recently my Rheum diagnosed me with neuropathy. I turned 37 in August, I can't wait to see what I'll be like in 20 more years! lol
My Husband thinks I'm just a witch and that I always have an attitude and he says I need to take something to calm down. For Crystal G....
I too have memory blocks, I say things backwards and I've noticed when I have flare ups, it gets worse. I tend to put 2 words together and make them one, don't know how. It's like my brain gets ahead of my mouth:)
Anyway... glad ya'all are here!!

Holly

Eva Ramos

06 Oct 2009, 18:58

if this is what it's called fb then i also have it pain doe's not go away i just pretend it does i try to tell my family and there cure for it oh mom just excesize.it should help i have to live with it cant take it sometimes i want to stab it where it hurts maybe it'll go away

Carolyn R

06 Oct 2009, 13:26

I was diagnosed with Fibromyalgia @ 47, I'm now
59 & 100% disabled. I take 25 different meds
I have a list of diseases since I was diagnosed in 1997.I had open heart surgery in 03, which they replaced the arotic & mitral
valves & a Tricupid repair.I also have Chronic Pain Syndrome.I have pain 24/7 the lowest it gets is a 7.also Osteoarthritis,Degentrive Disc Disease,Osteoporosis,Neuralgia,all over.& much more.I can't take Lyrica it causes Chf,I am very limited on what I can do. I can't take
any antinflamitory drugs because of my heart.
I'm very pleased that they have discovered it is the center nervous system. Please excuse spelling,I have the Dictionary in front of mebut a lot of these words aren't
in here.

Dennis V

06 Oct 2009, 12:11

My wife has been to so many Dr's that I cannot even count!! She has had the bad body aches and ringing in the ears and her body when she gets up off a chair or couch, you swear that every bone in her body is going to break!! They have said it is psychological or that its just degenerative arthritus, but yet when she was seen by a pain clinic which had Chiropractors that do spinal compressing that has helped many people with FM, she had a bulging disc in C5 and a herniated disc and yet her own MD said it was just degenerative arthritus. Anyone that can she any light on syptoms like this please please please feel free to comment on this so my wife can get some relief and some quality of life back, she is only 47 years old!!!!

Doris

06 Oct 2009, 10:15

Just saw this link from Arthritis Today and I am always looking for ways to describe Fibro to people. I finally have ended up with telling people it is similar to working in the garden for two days all day as well as the flu, except that it does not go away. Most people do not want to hear it anyway, but at least it is a tangible for them.
I have had better luck with supplements than I have with more "traditional" medications. For me Malic Acid 2x/day as well as Magnesium for spasms help the most. I take a base dose of the Magnesium and then adjust upwards depending upon the day.
Season changes are the most difficult for me. Today is very humid and the weather is getting colder so both the fibro and osteoarthritis are starting to be troublesome.
I am hopeful that someday we will all find relief!

Marie Hoffman

06 Oct 2009, 10:06

I was diagnosed with RA in 1992. I am 58 now. But for most of my adult life, I would tell my family that like the story of the Pricess and the Pea...that was how I felt. Like my whole body is very sensitive and sore. Lying in bed, I can feel every wrinkle in the pajamas, and I move constantly all night trying to find a comfortable position. I have worked full time as a nurse in a busy trauma emergency department and and raised 4 wonderful children. And like almost everyone else here..I have had GERD, RA, Degenerative discs, Osteo, torn muscles and tendons in my right ankle that has now collapsed....so I understand pain and discomfort and exhaustion. But I continue to fight everyday..I get up and go to work, and then twice a week work overtime. I am divorced so I do the yard work and everything else involved with running a home. I babysit my grandchildren and keep as active as I can. And like everyone here, when I say I have RA, people tell me they have arthritis too in their finger or knee etc....very frustrating...It is so frustrating to try to sleep all night and can't get comfortable and up several times a night and wake up exhausted and have to work and function all day. But as all of you do...we just keep on doing the best we can to keep going and going and going... :) Best of luck to all of you and hope someday someone takes this seriously and tries to find out what the heck is going on..why we all have the same symptoms(autoimmune disorders, GERD, pain, fog, inability to sleep, exhaustion, etc)yet the medical community refuses to take this seriously and believe it is a true illness.

Shirley Ann Smith

06 Oct 2009, 09:39

Please change my e-mail address from sproske@verizon.net to shirleyasmith4@verizon.net since I got married. Thanks

Terrye

05 Oct 2009, 18:59

Great article. I haven't heard of Savella, but will ask my rheumie about it. I've tried everything, including the fentanyl patch, but nothing touches the fibro pain.

To make my joy complete, fibro so often accompanies autoimmune diseases. I have solid diagnoses of CFS, mixed connective tissue disease (lupus and Sjogren's), chronic major depression, IBS, migraines, GERD, diabetes, osteoarthritis, degenrative disk disease, asthma, angina, plus all the AI symptoms that come and go. And I'm sure I'm forgetting something!

What has saved me from despair are my faith, my family, online support groups, knowledge about the disease(s), and good doctors who aren't afraid to try new therapies. Oh, and a SENSE OF HUMOR about it all!

I wish all of you all the support and encouragement you need! :-)

Sandy V

05 Oct 2009, 13:09

One of the best bits of advice the rheumatologist gave me was to join a fibro support group. A way to demostrate the pain (promoted by the National Fibromyalgia Association) is to ask the person to fasten a spring-type clothes pin on a finger. When the pain has built up, they'll take off the pin. Explain that's what you feel like all day every day all over your body, except you can't remove it that easily. One of the smartest things I ever did was to get copies of the Arthritis Foundation's flyer on fibro and give it to my boss and family members.

Linda Buzzetta

28 Sep 2009, 20:33

I have read every word that is posted from every person that has Fibro..and WOW..I have never found anything like this. I have SLE, Fibro, Condrocondritis, Myofacial Pain, Trigeminal Neuralgia, and Intercostal Neuralgia..along w bilateral TMJ. Enough Said!!!
I can say that I have truly exhausted myself..trying to find something to keep me from agonizing pain..(every day of my life) I have these conditions for 28 yrs..and I am truly very tired. The only thing I really find that gets me through the flare ups..Is having a deep and strong faith. There is not a treatment that helps..Not even resorting to Morphine Patches. (Fentanol).I do hope that I am not upsetting or discouraging anyone here..I truly hope and pray that more research will happen and there will be some answers for all of us.GOD BLESS all of you and your loved ones...I have given up on seeing Rheumatologists as well..Peace.Lynne From New York

Katie

27 Sep 2009, 12:54

I have been living with the physician's diagnosis of MYOFAACIAL PAIN SYNDROME versus Fibromyalgia and Repetative Stress Syndrome for sometime. "Now ain't that a mouth full".
One thing they all say in common is that the lack of sleep affects the healing process.
So through multiple medications and simple alteritives, I'm now looking for a more natural remedy. "Anyone got one?"
And another thing, how is it that I feel swollen but I don't look swollen?
Thanks for listening to me.

Tisha

19 Sep 2009, 09:08

I have been taking Savella for 2 mos now and I love it. It is the only thing that I have taken that helps with the pain....

lisa

16 Sep 2009, 07:40

I wake up every morning feeling like i have the flu. I take my medicines and after about an hour the pain at least gets better. When I get to work, I start to feel extremely tired and I stay that way all day. I can barely stay awake. I have tried to tell people how I feel or that I have Fibro but they just look at me so i just say I'm tired or nothing at all. Most of the time I say nothing because everybody tells me their tired also. My doctor gave my samples of Provigil and that was a wonder drug for me. It took away my pain and gave me energy. I felt almost normal again. Guess What?? My insurance will not cover it so I'm back feeling bad. The provigil cost over $400.00 without insurance paying some. I'm hoping one day for a drug that will help. Until then, I just live day to day and must learn to tell people no I can't do things like babysitting, etc. when I am tired because it makes it worse.

Ann

14 Sep 2009, 23:22

I find that describing the pain of fibro as how you feel the day after doing intense manual labor and heavy drinking, without the benefit of having any alcohol, works for a lot of people. Most people have done such things, usually in their teens or twenties, so they can relate. I then point out that I feel like that most days. I also point out rock-hard muscles in my back and spasming muscles when they occur in visible spots, with a simple "that hurts"." I'm so sorry" is the usual response.

The newer drugs, gabapentin (Neurontin) and Cymbalta have helped me a lot more than the older standard tri-cyclic antidepressants. Weight gain is a lot less too.

Connie

13 Sep 2009, 06:41

The only description I could come up with that describes my pain, is that I feel like every bone in my body is on fire.

As for the brain block, Fibro fog, I am starting to get concerned with my mind forgetting. i'm wondering if it is the Fibro or early stage of Alzheimer's. It is getting scarey.....

Crystal G

11 Sep 2009, 11:04

I am an FM sufferer and take 200mg of Provigil a day just to keep me somewhat awake. My husband is very supportive and even reads books on the subject - which is a blessing. My biggest fear now is the advancing of the memory "blocks", stumbling over words or words coming out of my mouth that aren't what's in my head; like saying bail mox instead of mail box; opening the cabinet for milk instead of the refrigerator, etc. I'm 50 and wondering if anyone else is going through this.
Crystal G

Mary Ann Winters

10 Sep 2009, 10:46

Finally, someone who somewhat understands RA and fibromyalgia difficulties. I live in a small town without many benefits,60 miles away is a wonderful rheumatologist and now here in town is a therapy pool-warm water! Any kind of cold makes me draw up into a little knot and the past few years extreme heat has become unbearable also. Humira,Cymbalta and some other medications plus the warm water gentle exercise with my "Chunky Dunkin" buddies has been an answer to prayer. I am doing better, I still have pain and attitude problems, but once I get started we all become better. We go after work for an hour or so. If you can, try it.

Kathryn Hertz

06 Sep 2009, 21:24

I was diagnosed a few years ago, but now that I look back I believe I have had it since I was about 8 years old (I am now 50). It was a culmination that led to the diagnosis that started with severe headaches and indigestion. I have severe GERD like one of the other commentors for which I take ACIPHEX. It is a blessing. I also have IBS, migraines, etc. I was recently prescribed Neurontin for my migraines and of all things, it has helped my everyday pain from FM as well as my migraines. I also take an anti-depressant (Effexor XR). The combination of the three drugs has helped greatly although I do still ache all the time and am constantly sleepy. I am able to hold down a job & I too refuse to let this disease stop me. I have too much life ahead of me with a new hubby of almost 4 years & 4 fantastic grandkids. Good luck to all of you as well as me in our journeys for relief. God will be there for support if you ask.
Blessings to all!

Deb

04 Sep 2009, 11:30

I've had this for years and I can't tell you how many times I've had "the look" or the "Oh, I don't feel good today either" because obviously nobody could hurt like this all the time!
When an orthopedist recommented by my rheumatologist told me that FM was just a "garbage-can diagnosis" I was furious. I've since found doctors who understand and accept it and modify my treatment because of it.
It's taken me and my rheumatologist a while to find the combination of meds and supplements that work for me. Because of reactions to meds, I'm pretty much limited to Tylenol for pain - when I switched to Arthritis Strenth Tylenol it made a HUGE difference because it's time-release. Low-dose Zoloft in the morning and trazodone at night, plus magnesium maleate 3xday help with pain and sleep. I had to retire to take care of myself, which meant losing the support of my wonderful co-workers who understood.

Joyce

12 Aug 2009, 14:09

Hate this !!!!! so much, there is no other way to say it, nicely that is. I have had this for so long, it cost me a marriage before I found out what was wrong with me. I am so tired and hurt all the time. Am on Lyrica right now, one tablet helps, two makes me sleep, go figure. Doctors tell me to work but when I do all I do is work and come home to sleep, don't even care if I eat or talk to anyone or not. What kind of life is that?? Headaches, muscle aches, entire body aches, it would be so wonderful to just not hurt for one day and live without all the pills. Sorry,had to vent a little, thanks for listening.

Dorothy Dunaway

04 Aug 2009, 22:03

I was diagnosed with severe RA about 2 yrs ago. My RA dr tells me is now under control but my body still hurst every day from head to toe. My RA dr sd that severe ra and fibro go hand in hand. It is sometimes hard to know which is hurting. It now makes sense why I hurt so bad and am severely depressed. I lost my job and home in FL and had to move in with my sister in PA. Thanks for your web site. It makes me feel better that I am no alone. Thanks for listening.

Eri Gonzalez

21 Jul 2009, 09:00

I had fibro for 17 years and related that your friends and family do not understand how you really feel. The fatigue, the pain, the inflamation, due to fibro had gastro problems, sleep apnea. Also had back problems, but I am still working and would not give in to this disease. Had taken everything and nothing seems to help, gave up on medication a long time ago, rely only on Aleve, Tylenol, Advil and Trazodone, because why take all those medications that will harm you at the end and don't do any good. Praying that they find something that really works without side effects.

Chris Kames

17 Jul 2009, 11:42

I HAVE TO AGREE IT IS VERY HARD TO EXPLAIN WHAT YOU HAVE AND HOW BAD YOU HURT. THERE'S MORNINGS I WAKE UP ASKING GOD WHY BECAUSE I HURT SO BAD

Lynda

18 Jun 2009, 21:44

As a health care provider, I know a lot about this insidious syndrome that effects me and so many others. I appreciate any factual information that can be shared with others so that the awareness and understanding of what we have to endure can be understood by the general population as well as friends and family. I look forward to more information on your site and thank you for all you do.

Evelyn Cordle

17 Jun 2009, 10:13

I have experienced problems with doctor about having fibro the statement from him was "you don't look like you have fibro" What I would like to no, is why at my age 38 that doctors think you have to look a different way. I can understand peope think you should look all bent over. My job is being a certifeid nursng assistant and my boss thinks I should be able to work more hours and longer hours.
Thank you for the information

bunny

14 Jun 2009, 17:01

I have fibro for more than 25 years. You mention it and I have tried it. I am finally getting elief from Savella. I'm truly amazed. There are a few side effects that I am working with, such as headaches,slight confusion,and anxiety. I will take a Xanax when necessary however, I think it might be worth the slight side effects.I think you should all try it after receiving the trial package from your doctor.It is importsnt to be weaned onto it. Good luck!
Bunny

Mary Jordaine

13 Jun 2009, 21:26

My heart goes out to Brenda who says merely "I'm tired", and to all of you who don't have anyone to talk to. I'd suggest you find a FM support group in your area. I've found that the only people who can really "get us" are other fibromites. It helps so much.

susan keels

12 Jun 2009, 13:42

I look forward to learning new information from yor site. I hope to hear comments from people who are taking Savella for fibromyalgia pain.

Patty

11 Jun 2009, 13:59

I absolutely agree with everyone. I was diagnosed some months after my 2nd child & she's now 12. I have severe depression & significant pain. I found out that I have serious GERD & esophagus inflammation & have gone through MANY procedures to find this out so the pain & depression have become unbearable lately! I'm on Venlafaxine for depression & due to GERD can't take any med for pain except Tylenol. I also take Lorazepam for everyday life cuz I have a 19 yr old son & 12 yr old daughter, I can't work cuz can't hold down job, husband has very stressful job & could be laid off and/or transferring. My family support is hard cuz they're in TX & me NM. We're very close but I don't get to see them often enough. In closing (cuz I could go on & on forever!) we who know how it feels need to stick together & it does help to have a place like this to vent on!! LOL Don't forget prayer! I pray all the time for more med info/research & for all others who have fibro & those who don't know it yet!!!! Hang in there people! With the help of others like us we can get through it better! :)

Ann Marie Tallon

11 Jun 2009, 10:38

I have been diagnosed with FM about 5 years ago but before that I was told that I had Epstein Barr, Cronic Fatigue Syndrom, Sleep disorder, weight problem and on and on and on. I have been suffering most of my life with these flu like symptoms on a daily basis and finally my doctor said, "maybe you have FM". He perscribed Zoloft and it does help, I also have depression which I think go hand and hand with FM, so I am taking mega doses of that. I hate taking medicine so I hesitate to try something new and start the proceedure all over again. Everyone is correct about the pain and fatigue, before I started Zoloft there were days where I actually could not get up off the chair. At least now I can work every day. Sometimes it is a push but better than that dreadful fatigue. Thanks for listening.

Rebecca

25 May 2009, 14:41

Hello everyone. I have suffered with FM since I was a child. There have been times I have not functioned at all to times that I it's just a minor annoyance. 2 years ago doing some research for something totallty unrealated I came across some information about doctors treating people with FM with low does ritalyn. I take it early in the morning as to not interfere with my sleeping. It has absolutely saved me. I have gone back to school and will finally finish by BS degree next may. I wish I had of found this years ago because it has taken me 9 years to get this degree. Some docs scoff at this and some understand that when the brain can focus better pain is controlled better and they have more energy to complete the things they must do like caring for your children! Most people with FM that get tested for ADHD are diagnosed so getting the prescription is usually pretty easy. Google this and see what you find. Hope this info can help someone. It really gave me a new life.

william k. martin

09 May 2009, 23:21

hello,iam 39 years old,i just found out i have fibromyalgia,has to go get xrays on my feet and hands to find what is paining me,iam taking lyrica,i have 4 surgies on two on my right knees,and two on my right shoulders,been through alot over the years.got to go medication making me sleepy thank you good night. william k. martin.

yvonne allen

30 Apr 2009, 05:35

i too have found this site quite helpful.i have suffered from fibro and spondylitis since having my youngest daughter whos now 23 and showing signs of both of these herself.my father also had spondylitis and i think this is the main problem.i would get checked for this asap if i were newly diagnosed with fibro.there is a blood test for spondylitis so it is sure and then you know what your up against.i have had lots of medication but only co- codomol will help me as i have also got a sensitive stomach due to the inflammation.i feel a bit let down by the doctors.i had to give my job up as i couldnt manage it but am finding it very difficult to get anyone else to employ me.i need to work or i will go mad.

Rachael Dawson

23 Apr 2009, 08:28

Im 24 year old old and was diagnosed with fibro in 2005, 8 month after i had my first child! it took the doctors 10m to diagnose and 3 hospital admissions, 1 of which was in newcastle hospital for 17 days. Im in constant pain and they still havn't found the right medication for me! i can't remember what a decent night sleeps is and its even more distressing because i have a 19m old daughter who constantly wants to play and run around. i suffer with depression and that alone is hard to deal with. Its hard for anyone to understand but its comforting to know im not the only one. i get jealous of my friends who can go out every weekend and have a laugh when im stuck in, watchin telly in pain!
theres bound to be some sort of medication in the future that will help, im keeping my fingers crossed anyway!

Tammy

30 Mar 2009, 15:27

I was diagnosed in 07 but I found out today that I have had it for many years and it is just getting worse. I have a good support system because my aunt also has fibro so I know someone who knows how I feel. My fibro causes me not to be able to get out of bed some days and I miss work. I hate hurting all the time, but I know there are people out there who are worse off than I am, and sometimes that helps.

Renee

30 Mar 2009, 14:31

I have had the diagnosis of fibro since 1997, so I relate to all of you. I was particularly amused by Bev's comment....because the same thing happens when I talk to others.....if they have ANY ache or pain for that day, they think maybe they "got" it too!!!! It's as if they think it is contagious............lololololol. I think the best way is to look at every single day as a chance to live your best life as best as you can, and then call it a day. NO ONE wants to be around complainers, no matter how badly you feel. Find someone who "gets you", and vent that way. It is true, a friend who is affected is the best to understand what you are dealing with. Have a good, healthy day!

Pam

30 Mar 2009, 13:29

If for no other reason than support, I enjoy the Arthritis Foundation and its factual and encouraging site. I was diagnosed with Fibro in 2006, though I believe I suffered with it much longer. I had one doctor tell me the pain was a viral infection and also significantly linked to depression. At one time, I was given antibiotics to treat the painful symptoms. Cymbalta has helped yet my levels of pain and fatigue continue to grow. I would go so far as to volunteer for a study to see if there is some relief out there.

Thanks for all of the info and encouragement AF! Much appreciated!

bev

30 Mar 2009, 10:38

I think it's a common human experience to not be able to understand what other people are going through unless you have been through it yourself. I've had fibro for 13 years and no longer expect people to understand. I like the suggestions in this article -I explain it simply and factually, then move on to another topic. When I need to unload I find a friend with fibro, because I know she will understand. What I am beginning to find annoying is that when I meet people my age (over 50) they guess that they have fibro just from the normal aches and pains of aging.

brenda creech

28 Mar 2009, 11:07

i have tried to tell people how i feel but some how they dont even pay attention to me
i have printed all about it off the com but
they feel bad at the time but forget very
soon it is going on ten years now im tired
very tired.

Cathalene Silver

14 Mar 2009, 11:14

Your site is wonderfully supportive. I have been avoiding seeing a Rheumatologist for quite some time. So, it's helpful in alleviating any fears. I'm sure my MD would be thanking you right now! Again, thanks.

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Explaining Fibromyalgia to Other People

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