1. Health
You can opt-out at any time. Please refer to our privacy policy for contact information.

Discuss in my forum

Adrienne Dellwo

Will It Get Worse? The Fibromyalgia Prognosis

By October 19, 2008

Follow me on:

It's something that's gone through all of our minds at some point -- will my fibromyalgia get worse? We can't answer that question with a "yes" or "no," in spite of what you may read on sites that want to sell you an expensive "cure" or proprietary (and unproven) treatment. I had a frantic email recently from a man who'd contacted one of those sites and was told, "Everyone knows fibromyalgia is always progressive."

Quite frankly, that's a flat out lie. All you have to do is visit my forum to find people who have improved over the years. As for me, my worst days now are about on par with my best days a year ago, and I no longer have days or weeks when all I can do is lay on the couch and suffer.

On the other hand, it would also be a lie to say that we'll all make improvements. What is the prognosis? According to studies and (legitimate) doctors who treat fibromyalgia extensively:

  • About 1/3 of us will make significant improvements
  • About 1/3 of us will get worse
  • About 1/3 of us will stay about the same
  • A very small percentage will have a complete remission

What makes the difference? So far, we only have evidence for a few things that help our outcomes: early diagnosis and treatment, and (sigh!) exercise.

Don't think of exercise as aerobics and treadmills. I'm talking about some mild stretching or a short walk, for a few minutes a day. Getting started is the hardest part, but this article can help:

How have things changed for you over time? Have you gotten better? Worse? Stayed the same? What do you think has made the difference? I'd love to hear your stories, either here or in our Fibromyalgia & Chronic Fatigue Syndrome community forum (under Newsletter & Blog Topics).

Suggested Reading:

Image © McMillan Digital Art/Getty Images

Add to Technorati Favorites

Comments
October 24, 2008 at 3:26 pm
(1) Nancy Henson says:

Hi, I recommend Dr. Pelligrini’s new book “Fibromyalgia, Up Close and Personal.”

Regarding will it get worse? Well, my problems are difficult to really identify – I have the overlapping “syndrome.” I have both Fibro and ME/CFS. I have other conditions like idiopathic neuropathy (but no diabetes).

I read a study report some years ago in a Fibromyalgia Network newsletter that the majority of people who are diagnosed with Fibro will eventually get ME/CFS. I haven’t heard recent stats – would be interested to know.

Also, my observation is that Fibro sometime is the precursor or companion to other disorders.

This is all very complicated and I do wish more research could be done to identify what’s really going on.

But it does seem with ME/CFS that if you have the luxury to take a year or two off from life and just concentrate on getting well, you stand a much better chance of recovering more. Not cured but a better recovery. These appear to be chronic incurable disorders and the ME/CFS/FM experts will tell you so.

I’ve had this for 25 years come November 5th, and I’ve seen a lot, known many, many people with these disorders and all the other nasty little disorders that piggy back like irritable bladder, etc. There are soooo many. One doctor told us that when he wrote down all the various symptoms for a while and they filled several pages.

This tells me there is so much more that needs to be researched to help us. And for ME/CFS, it is not coming. Fibro gets about 10 times the research.

So being able to leave your job and get well very early on is so important. I don’t know if that’s as applicable to Fibro as to ME/CFS but since they are so much alike, I just can’t help but think it may be so.

And check out Bruce Campbell’s Self Help Course. He’s written a book and its online as well.

Nancy

October 24, 2008 at 5:00 pm
(2) Lu Anne says:

Regarding will this get better? I have greatly improved in the 15 or so years. The very worst was as fibromyalgia crept in all directions of my body…the burning knots that lasted for weeks. I was very lucky in that my stomach could stand LOTS of aspirin. I was taking up to 16 a day…4 at a time. My doctor started me on amitryptilene, and I never dreamed I could sleep so well. And I’ve always started my day with a hot shower. I just can’t get started without it, as it loosens me up. Now I have a hot tub also, so that is really helpful. Yes, mild exercise helps, and when having to do chores that are very physical I need to break them up. I’ve learned when to take a break. Listen to your body, because it knows best.

October 25, 2008 at 8:54 am
(3) VaBreeze says:

Well…the “early diagnosis” is going to be tough. In most cases it isn’t early…one having traveled from doc. to doc. before even finding the right diagnosis.

I had also heard it wasn’t progressive. Thing is i’m already 55 and I can’t battle the symptoms as well as I could when I was 35. I still have days, sometimes weeks, where I can’t do much of anything due to fog, feeling fatigued, aching…but I also have those good days.

Taking time off is a good suggestion (if one is financially able to do this) because it takes a while to go through the stages after being dx’d with a chronic illness. Disbelief, mourning, anger and finally, acceptance. Then it off to work on how to pace yoruself to keep from going into a flare. It also takes time to find the right treatment for you. I don’t believe any of the online advertisements that say they have the cure.

Even though I don’t feel great most days, I do what I can so i’ll have that feeling of self-worth and accomplishment. I try to pace my tasks and simply take it one day at a time. I also have a spa and it helps with the tension and aches. Be aware that using a spa or hot tub may cause swelling and could aggravate the problem.

Maybe fibro gets more attention because there are more people discovering that they have this illness. I believe there are many who have been dx’d as fibro, but actually have both FMS and CFS/ME.

October 25, 2008 at 5:23 pm
(4) Leona says:

I have both fibro and CF/ME. I got progressively worse for 9 years, until I could do little more than lie in bed and sleep. At that point I was hospitalized for MRSA in my leg. It was like a miracle. All the things I couldn’t explain to the doctor was evident to the nurses, I left the hospital on oxygen and an appointment with a sleep doctor.

The improvement was minimal, and I tried hard to exercise regularly, but couldn’t.

Then my doctor put me on Lyrica, and the last eight months has been wonderful. I have been exercising in my bed three mornings a week. I am losing weight and getting stronger, and the fog is greatly improved.

I understand that Lyrica doesn’t work on about 1/3 of people with FM, and not at all with CFS. But I am one of the ones it works on, and I am so thankful. It isn’t a cure, but it does supress the fog and much of the pain.

Leona

October 26, 2008 at 10:30 am
(5) VaBreeze says:

I’m so happy that the Lyrica is working for you. I also take it and can vouch that it works for my pain, however, it tends to make me feel more fogged and my cognition becomes impaired.

October 27, 2008 at 1:40 pm
(6) Deborah says:

As a newly diagnosed FM sufferer…the thought that it might never ‘go away’, feels, at this stage…like a big, painful ball and chain! I guess that I am still very much in the ‘acceptance’ stage of this illness. Isnt it tough!?
Keep your chins up ladies (and men, of course!)
Deb

March 20, 2011 at 8:08 am
(7) keleee says:

I’m glad to read this article and find out the stats for Fibro/CFS. I had only fibro but after less then 10 years began to show signs of CFS. Now most days I wonder which one is more debilitating.

For me everything just seems to be getting worse with age. My pain got so bad I broke down and went on narcotics which I never wanted to do. I spend most of my day now resting and I work 2 hours a day which leaves me exhausted but most days I can take my dog for a walk. I live alone because relationships are too much for me. I literally am too ill to keep a boyfriend. I tried but they get mad at my lack of energy and chronic pain.

My biggest fear is that eventually even the pain meds won’t work and I will have no breaks from this hell. I have tried every drug out there for fibro and nothing worked for me. Lyrica made me swell in the legs and ankles. I went on Vicodin and after a few years it didn’t work anymore. I am on Methadone now and somedays it doesn’t cover my pain. I am reluctant to increase it because they all seem to stop working. In the beginning it is great to be out of pain but it just seems like every month it works less then the month before. Then I am left in pain all the time unless they increase the dose.

My other fear is of becoming a slave to a pain pump and having no quality of life. I have seen some sad cases and I don’t want to end up like that.

So what is the prognosis for the 1/3rd that just keep getting worse? Will I be bedridden and unable to walk? I have watched my strength decrease over the last few years because of my lack of exercise. I am only 48 years old and have been dx’d with Fibro for 10 years and CFS for 3 years. What is end stage fibro/ CFS like?

Thanks,
Kelly

December 8, 2011 at 5:55 pm
(8) Kat V. says:

I began having symptoms of fibromyalgia in 1993, but not one doctor at that time suggested anything other than depression. In fact, only in the last few years have I found physicians who, using MRIs, X-rays, blood tests and so on, discovered reasons for my pain and exhaustion/depletion which they say likely led to my fibromyalgia.

My fibromyalgia has become progressively worse, and I have no idea how to cope. Just moving my body is excruciatingly painful. What becomes of the 1/3 with progressively worsening fibromyalgia? Do they become bed-ridden? If so, how do those who live alone cope? Do they die of starvation? Do they commit suicide? If so, how? What do those with no family and friends to help do? I have such a miniscule amount of energy that I can bathe no more than once every couple of weeks and cannot prepare or cook food for myself any longer.

I have no one to help me nor does my state have agencies or organizations to help. I assume that the powers that be in my state have no concern for those who are chronically ill and deteriorating. I cannot afford a long-term care facility nor can I afford 24/7 private care. Even if I could afford a long-term care facility, I am physically unable to sell my possessions and home on my own.

Does anyone know if there are any federal agencies or programs to help people with progressively worsening conditions? In the U.S., so many people with chronic conditions such as kidney failure, COPD, cancer, AIDS, and so on are living longer.

Am I alone in thinking that it is unethical, immoral, inhumane, and downright cruel to continue using advanced medical technology to extend life, extend death, extend suffering for those with chronic, progressively worsening conditions, without considering how the patient will fare once at home, usually alone? Is the human patient no longer part of the equation? Any advice, information or otherwise would be very welcome.

April 12, 2012 at 7:21 am
(9) Lesley Gough says:

Hi. I am 62yrs old. I have had fibromyalgia for 16yrs. I was a triathlete competing in triathlons. In the July of that year I competed in my last triathlon because in the Sept. this condition hit me full on. I have fought it all the way. I know excercise is good for you. I have not been able to do any since that Sept. My condition has got steadily worse. On all kinds of meds-tried all sorts of meds/therapies. Now a portion of people seem to recover from this condition(I personally question whether they have actually had it). Because I have been desparate to get my life back to normal, as it has affected my marriage and my family. I would give anything to be well! I am now in a wheelchair. The muscles in my legs and back have become so weak they can no longer support my body.I am so depressed that I wish I could end my life ‘seriously’

April 12, 2012 at 7:52 am
(10) Lesley Gough says:

I have had fibromyalgia for 16yrs.I have fought it all the way.I know excercise is good for you.I have not been able to do any since that Sept.My condition has got steadily worse.On all kinds of meds-tried all sorts of meds/therapies.Now a portion of people seem to recover from this condition(I personally question whether they have actually had it).Because I have been desparate to get my life back to normal, as it has affected my marriage and my family.I would give anything to be well! I am now in a wheelchair.The muscles in my legs and back have become so weak they can no longer support my body.I am so depressed that I wish I could end my life ‘seriously’I know there are lots of doctors and’cured’fibromites who with the best of intent try to jolly us all along and I do understand the need for hope in someone who is trying to cope with this awful thing.And there are those who will be cured/get better.But there are some of us who go right to the end and I have to admit that this’jollying’people along angers me.Oh how I believed this in the earlier years,but if I had known the real truth I would have made some different life changes and decisions which may have helped me and my family.When we hear someone has MS we all know and accept what that means.Pain,deformity,death.Well I think it is time we acknowledge that if you truelly have Fibromyalgia this is the same end for you As many MS sufferers are trying to get euthanasia legalised so they can end their lives before their dignity leaves them,I believe as a Fibromyalgia sufferer near the end -lost my dignity, damaged my lovely family- that I would like to end my life now before I get any worse.Sorry to disappoint all of you in the early stages of this illness.I hope you get better(or do not really have it).I hope you never get to where I am, but this is the true end for someone who really has Fibromyalgia.Lesley Gough

April 12, 2012 at 7:59 am
(11) Lesley Gough says:

The comment ‘left by me’ is only a fraction of my true answer! Which contained I felt a lot of relevent info for Fibro sufferers. The people who run this site obviously did not like the content of my comment and yet there was nothing unethical or untrue in my comment. Why did you not print my true answer for people to read?…Lesley Gough

July 4, 2012 at 7:03 pm
(12) nicola reynolds says:

i have been suffering now from fibro and10 other illnesses for 12 yrs. some are incurable ,i also think that some have started due to the fibro. i think once you get an illness like this, you end up getting more illnesses as time goes by. i was hoping to read s.thing positive on this site but it seems like most of the sufferers on here feel like me. i am on morphine patches and lyrica pills [the highest dose]. and tramadols and paracetamols [the highest dose] some days im not too bad and i feel like i can be normal again then i get out of the house and actually do s.thing and the pain is therefull force then i realize that im never gonna be normal again! im given treatments and diffrent drugs constantly,iv been prodded poked and had doctors look and feel every part of my body, too the point where i feel like iv been violated! i feel like a human guinea pig and most of what theve done hasnt made any diffrence to me i dont think it ever will. i seem to have got progressively worse since the begining and im terrified of gettin to the point where im completely helpless,for most of the same reasons as the lady that posted on here. some days i wish i wasnt here anymore but my son and animals keep me from doing s.thing silly. for any people out there like me iv found if u have a child or even animals that look to you,love you,rely on you for there lives it makes you find the determination and will to get up in the morning even when your bodys telling you that you cant!

August 26, 2012 at 2:17 am
(13) Lisa says:

I don’t know if it was mentioned, but I recently went on the guaifenesin protocol by a doctor in Marina Del Rey, Ca. I can tell you that Vicodin is not the answer. I took it for 10 months and it made me worse! I changed my diet; fruits and vegetables, turkey, fish, no dairy, no gluten, no alcohol… If you’re not interested in the guai, try curcumin and bromelain. Both helped me until I found the guai. I also take some supplements with it. I’m still pretty tired, so I’m wondering about chronic fatigue also, or if it’s just the fibromyalgia. Only been on the new protocol about a month, but already noticing a difference. It took the edge off the severe pain. Hope this info helps. Who woulda thunk that snot medication (aka Mucinex) is good for fibromyalgia. Get the book, follow the protocol… It’s pretty easy if you ask me and it helps.

April 16, 2013 at 4:07 pm
(14) Paula Clarke says:

My fibro has got worse tbh but I’ve also got graves diease, and shorgrens so the out look for me is bleak even the consultant told me I will end up in a wheelchair. I’ve got all my helping hands commode sticks bed handle for my hubby to pull me over because of pain. My doc understands all about fibro and the rest and is great he’s always tries different meds and gets me all the help I need and he said I would have my bad days but good days aswell my eyes r going Aalto of foggy days so that my answer xx

July 24, 2013 at 1:37 am
(15) Becki Royce says:

I had Fibro for probably 10-15 years before I was finally diagnosed. All I knew was that I felt like hell and I waited forever to get some kind of treatment that worked even just a little bit.

After going through every possible medication until I finally got some margin of relief from Duragesic or Fentanyl (generic) patches. I cannot imagine what my pain level would be without it. I change it every other night and and if I don’t change it, I pay for it.

My pain level is increasing daily and I am struggling with depression. I have lost a couple of jobs because I haven’t been able to keep going.

My happy face is not so happy anymore, but keep up the good fight.

July 26, 2013 at 7:26 am
(16) Lesley Gough says:

Am 63yrs old. Had fibro since age 45 (18yrs) Was a triathlete up till then. Very fit, healthy diet etc. Pain started in feet worked its way through body. Although in pain kept walking, gentle exercise etc. If you don’t use it you lose it has been my motto. Worse thing of this condition is its invisibility. Cause you basically don’t look that ill people over the years have drifted away. Can’t understand why one day you may not feel so bad, but then another day you are in chronic pain. Difficult to make arrangements with people. Caused problems within my family. I would give anything to be able to swim, run, cycle, ski etc, all the things I love. Yes I have turned to less rigerous hobbies, have always been an avid reader. But finally I am in a wheelchair and now virtually bedridden. I have fought this condition all the way, but feel I have lost the last 18yrs of my life. Because I was always so active and healthy never did I think I would end up like this.My doctor (s) have all said I have done really well to last this long, but I wonder if it has been worth it as I feel I have no quality of life and have not had for a long time. I don’t know how much longer I will be like this, but it is not a good life. This is an honest answer to ‘what is the prognosis of this condition’….Lesley Gough

September 26, 2013 at 4:17 am
(17) cee says:

I have fibro, chronic fatigue…osteoarthritis, stenosis, bone on bone hip and shoulder. Etc. I don’t know what I have. I feel like a medical incredible. How do I ascertain what I can and cannot improve on? I can’t work out cuz the loss of motion in hip and shoulder and fatigue. The depression and anxiety are getting worse. My life is flat. WHAT is going on and what can I do?

February 17, 2014 at 2:07 am
(18) Bibi says:

Hello i am 22 years old and was diagnosed with fibromyalgia around 19 years old. I had symptoms since before then but it really skyrocketed when i messed up both my knees. I have tried so many different medications with them only making me feel worse and worse. Everyday is really a challenge. I am one of the ones that feels it gets worse. My body holds in the pain and numbs it until i have all the pain at once to the point where i am shaking and crying for hours on end because it feels like my body is on fire, my leg kicks and the pain shoots up my spine. Its practically a nightly thing for me at this point. My memory has only gotten worse. My ability to concentrate has gotten worse. I cant seem to pass any of my classes anymore. It is hard. I keep pushing. But some “episodes” i wonder, if it keeps getting worse how much of it can my body handle. I try to find people who can understand, not take the burden, but actually understand that it happens and its not their fault, i just have a “medical condition” but being “so young” people my age do not, or choose not, to understand. I am soo tired. How do you guys work and get through the day without getting to sick from working? How do you find people who understand when your own family doesn’t, hell they don’t even believe you. I suppose this is one of my downs, because i can normally suck it up fairly. but sometimes its just too hard. i read articles to try to feel better and i just end up feeling worse. does anyone else get these episodes? 10 min- 4hr long, sometimes breathing seems too difficult because of how strong the pain is? there is nothing that helps through that. you feel like that the pain is so unbearable, and you havn’t had a breath in hours, if feels like your heart might stop. then there is no one to rely on. they make it worse or they sit in self pity because they cant help you.

February 23, 2014 at 9:47 pm
(19) adrianne says:

I have probably had fibro for 3 years, best as i can tell. I began looking up my “weird” symptoms months ago and decided i just knew i had it. Was actually just diagnosed with it a couple weeks ago. Am still working out…thru blood sweat and tears. Still caring for my own home and family. And still working. Tho i do work for myself and set my own schedule. That helps. I do take meds. No narcotics yet….. certainly gonna put those off as long as ican. But this blog has been disheartening. Lots of sad people who seem to be at the end of their rope.i pray that is only the case for some of us. I am sorry to hear it. Must admit it scared me for a sec. You are all in my prayers!

Leave a Comment

Line and paragraph breaks are automatic. Some HTML allowed: <a href="" title="">, <b>, <i>, <strike>
  1. About.com
  2. Health
  3. Fibromyalgia & Chronic Fatigue

©2014 About.com. All rights reserved.

We comply with the HONcode standard
for trustworthy health
information: verify here.