Is Fibromyalgia Progressive?

NewLifeOutlookNewLifeOutlook New Life Outlook
edited November 2014 in Coping

Fibromyalgia article: Is Fibromyalgia Progressive?Is Fibromyalgia Progressive?

Is fibromyalgia progressive? It certainly seems to be, though doctors say it's not. Sarah Borien shares her tips for limiting that feeling of degeneration.

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  • I find that my mental outlook affects the frequency of my flare ups to a point . I just lay down if I am tired but I try not to sleep too much as that can be depressing and it only adds to it all. I do take celebrex butI am not taking anything stronger as I hope it will help for a long time.Rest is important. I had to retire from working with everything else that was going on in my life,I couldn't handle it.
  • thanks for letting me hear ll your comments it really has helped me to know I am not alone...
  • Well I can't complain much because I try very hard to manage my fibro with home remedies and herbs and suplements plus I try to stay on top of what I eat I don't take meds every day except if I went overboard with my diet such as I eat something that could trigger inflammation then I would have flare up which is the only time I would take a muscle relaxant with an anti inflammatory to get better the next day after I'm pretty good with the way I take care of fibromyalgia
  • Hi I am 44 years old was diagnosed with fibro in 2007 and yes I agree it gets worse. I have a question does having surgery really aggravate it? I was in a car accident and had to have surgery on my back my fibro now worse than ever. My heart goes out to all with this awful disease.
  • @NewLifeOutlook I think it is and there are studies being done on the subject. Here is some "light" reading... lol ;)

    I'm 53, I was diagnosed with FMS in 1998 and I still hate this disease... yes it's been upgraded to a disease - that seems wild to me because it's been a syndrome for so long. My pain has increased over the years, I now take Lyrica and it helps. On another I have inflammation due to an arthritis issue because as we know Fibromyalgia hasn't any inflammation.

    Anyway, yes I do believe it gets worse. I've gone through almost everything including narcotics... they do not help. My neurologist has started me on Lyrica, a TENS unit and soon physical therapy for pain control.

    Thanks for allowing me to share,
  • I was diagnosis at the age of 40. It initially started in my right elbow and slowly progressed to all my larger joints and now spread to my smaller joints. It must definaty is progressive. My husband is very supportive but only find others slightly supportive and wonder if they even believe it's real. I actually had a Dr. make a comment in front of me regarding one of her patients that "fibro is a psychiatric syndrome and not a real medical diagnosis." I was so upset, I couldn't even respond and take up for my patient. I feel for anyone who suffers from this illness. It has changed my life. I wake up everyday in severe pain. I have literally tried everything only having a new drug help me slightly. Thank God I have a NP who understands.
  • Hi ladies, I have had Fibro for about 20 years now and I agree I think it gets worse over time! I really try to not let it stop me from doing things with my family but later I really pay for it! I recently started riding my own motorcycle with my husband and my two sons and I really enjoy it but that night I hurt so bad I have to medicat before a ride and after, my hands and arms go numb and I can't feel them and my legs cramp so bad I just want to cry but I try and be strong because we love our time with the boys and I don't want to give it up. It's really strange because every day is Different very few good days any more. Thanks for listening! God Bless you all
  • I am 36 years old and was diagnosed when I was 32. It is hard and it is progressive. I can't imagine having it as long as most of you. I commend you ladies...God bless you all.
  • I have been soaking in essential oils when I feel a flare up coming. ... works better for me ... I could not tolerate the prescribed meds
  • Wonderful article, those are some really practical tips.
  • It definitely IS progressive. Many people, including myself, once diagnosed, can look back years, or decades, and see when they symptoms first started. I have worked full time for at least 30 years since my symptoms started. In this past year since I was finally diagnosed, I'm still finding new symptoms starting, and old ones getting worse. I haven't been able to work since September. I probably won't go back to work. I can't imagine being able to. So, yes! It's progressive.
  • @NurseWair Hi. I'm also a nurse. My husband is the only one that 100% understands and supports me, too. I'm having trouble finding a doctor that fully believes Fibro is real. I'm leaving the doctor I worked with years ago, and my family and I have been going to him for over 30 years. He is uncooperative with all the paper work, etc. I never thought of looking for an NP. I'll try that. Thanks. God bless you during you walk with Fibro.
  • I believe it is progressive... over the years mine has progressed and ive had to have surgeries and after each one my fibro progressed rapidly to the point that its debilitating to me now. ..
  • dklinda11dklinda11 Member
    edited December 2014
    I did however recently have a friend give me a sample of something that's all natural and reduces my fibro symptoms. has improved my life greatly by taking away the fibro fog and giving me energy and reducing my fatigue and pain at times. ..I have never believed in things like this and have tried everything and nothing helped, but just in my 3 days sample I as well as my family seen tremendous improvements. .I still have bad days with my pain, but less of them and an overall improvement in my daily life functioning and feeling more like the old me before fibro took over my life. . Im not allowed to "promote" on the site but if you would like more info you can contact me. ..if I didn't think abs know this helps reduce fibro symptoms I wouldn't waste the time in talking about it, but I have to share this because it may help someone else with their symptoms as it has me and I don't ever want to not have it now it makes that much of a difference in my life. .ty and God bless you all
  • I've only been diagnosed with fibromyalgia for 4 years but I have suffered with it for many more years. I thought I was losing my mind I was hurting in so many places I didn't know where to tell my doctor where the pain was. There are many doctors that will not acknowledge fibromyalgia as a disease. I agree it is progressive I have days that I don't want to get out of bed and I know it's important to keep moving. I need to find and exercise regiment that won't break me down If anyone know of one please share. I was on Lyrica but the swelling and dizziness was too much. Now I'm on Gabbipentin. Just started it. Hopefully this will work better for me.
  • I've had fibro for 30+ years. There is no one who can tell me is not progressive. New pains. New areas affected. Areas worsen. Numbness more frequent pain in new areas. ....... There is no way this is not progressive.
  • I was just recently diagnosed with fibromyalgia in november but I knew I had it for much longer my symptoms started getting worse in August and has been down hill ever since my Dr put me on gabapentin it didn't really work to well it helped some vrs not to taking anything at all so she up the dosage from taking 1at bedtime to taking 1 n the morning 1n the afternoon and 3 at bedtime; last night was my second night of starting it and let me tell u I finally had a night without pain there was some soreness I had still but no pain and i felt like my old self laying n bed with no pain. I still soak n the tub with lavender oil to help relax me. Hopefully with the cold and rainy days that are coming I will still have no pain. We will see.
  • I've seen at least six different articles in the last two years from recognized journals stating they have found physical basis for fibro. IOne is that part of the lymphatic system fails to recognize certain toxins such as lactic acid created by exercise and does not remove them from the body. This is why exercise actually makes fibro worse for many people. The other thing they found was a nerve fiber failure that transmits on a loop. Understand this is my layman's short version of articles full of scientific jargon. They still don't have a cure for it but they do know its an actual physical malfunction and not a psychological disorder, it also explains why long hot hot bathes and deep tissue massage help. Hot baths with Epsom salts helps you sweat out the toxins your lymph glands aren't doing their job, and deep tissue massage breaks up trapped sections a toxic fluids in the lymph glands and helps your body flush them out. I don't understand why this info doesn't seem to be dessimated more thoroughly, when the thing about the lymph glands came out two years ago my support community exploded with joy....oh wait, these discoveries have been made in Europe and there for get no coverage here in the states because it might hurt the sales of lyrics and cymbalta and there would be a call for research testing the actual problem.
    Sorry as someone diagnosed with fibro twenty years ago who nearly died of lupus (which is what I actually have and could easily been diagnosed by little testing beyond the poke and prod test) I am very bitter about how women are dismissed in the health care system and suffer needlessly. Last I read Europe was working on a way to correct the lymphatic thing with medications but it is slow going they don't have the funding the us does.
  • I have been diagnosed for 35 years. I was told it was just a few aches and pains and that my problem was Lupus. I was finally told that all of the things they thought were lupus was the fibro. I was fortunate to finally find a Dr. that understood and has been great at working with me to find what I need. I was not able to do any of the things I enjoyed like sports, gardening , and most importantly doing things with my kids. I learned to pick and choose. I knew if I went hiking I would need extra time to rest. I went for about 8 years with very few symptoms after about 17 of severe symptoms. I am in a flare and have been having more problems in the last 4 years but it still isn't as bad as it was. I know my problem is stress and 3 surgeries in 3 years. Do not give up hope that you can feel better. I am president of our local Master Gardeners this year, I am able to enjoy my 8 grandchildren. 2 1/2 months after having partial knee replacement I drove 800 miles to Disney and walked 3 days keeping up with 9 teenage girls then drove 800 miles back to get up the next morning and drive another 800 miles round trip to take my granddaughter home. I would not have been able to do that 30 years ago. I did make sure I didn't have to do anything the next weeK because I needed to recover.
  • I'm 50 and and have been in pain for years. I have back problems with disc herniations and arthritis. My periods were so bad and painful I finally had a hysterectomy 6 wks ago. My job became so stressful that after 18 yrs I just up and walked out. Anxiety and depression was flared up and I was i constant pain that I couldn't explain and exhaustion, so exhausted.
    I was directed to a therapist and Phyc dr. After just one visit with the therapist she said I think you might have fibromyagia. She told me to see a rheumatoid dr.
    I have been tested for everything, all negative results. I'm now on cymbalta, gabapentin, a muscle relaxer and anti inflammatory.
    No diagnosis for anything as of yet.
    Then I started reading up on fibromyalgia and came across this articles.
    I don't need a dr to tell me what's wrong. This is the problem and I've had it for years and yes it gets worse. As I read down the list of symptoms nearly everything listed is what been happening and getting worse.
    It got worse with stressors, with every surgery, every year it has gotten worse. I can do less and less. I used to be a work horse. Love to garden and do home improvements with the husband. Now I get exhausted and extremely sore if I put a few plants in the soil or vacuum. I thought I was loosing my mind because no doctor ever looked beyond my depression flares. Those meds never took away the ringing ears the feeling like I was burning with fever but no fever, The aching muscles like I had a virus or something. I would take off work sometimes and just stay in bed to rest for no apparent or logical reason. I just couldn't function or explain why.
    And when I was really sick it was horrible pain.
    What is this disease and how do I get a handle on it. I took leave from work to get my head better but this is what I found. What do I do now?

  • @sidhe Hi there! Enjoyed your post; particularly re: lymphatic system. I constantly do research as you do, & found a lot of info on this. I found a chiropractor who accepts my insurance and offers lymphatic drainage aling with massage therapy, acupuncture and other alternative treatments. I'm currently recovering from abdominal incisional hernia surgery. So I'll need to wait til my surgeon releases me. Hoping for the end of January. I'll keep you posted :) Sending many gentle hugs and prayers!
  • FM is definitely progressive. Anyone who has it knows this to be true. It started with soreness in my hand and then turned into full blown FM and CFS. It started in 2010 and I became work disable in 2014. I was a full-time nurse and fought to work for years.
  • @LynnMK
    I'm also a nurse and had to quit working this year. Financially this has been a real nightmare. FM is definitely progressive.
  • Hi Connie, I was Dx in 2010 too; however,I was symptomatic for yrs beforehand. I left teaching, very depressed about that, and am filing for disability insurance next week. FINGERS CROSSED !!!! I believe FM/CFS is progressive too. I found a chiropractor who accepts my insurance and offers lymphatic drainage along with massage and acupuncture. So I'm going to give that a try. I'll post my findings.
  • @ConnieRN Hi. This is the first time I'm writing in here. I to was a nurse and had to give up my job when I was only in my twenties although noone knew what I had and I fought with consultants for years who said that the pain I had was in my head. Very hurtful. I have now been told that I have fibromyalgia and at the beginning no-one except my own doctor believed me about how much pain I was in. I have had 3 back operations, none of which has helped. My spine is fussed at the bottom and my 2 hips ache constantly. So much so that I walk with crutches and sometimes I can hardly walk at all and have to stay in bed for a few days when I'm like this. It had gotten worse over the years, I firmly believe that.I'm only 46 but I feel 96 lol. I live each day to the full, or as near as possible. I won't let this beat me, I'm too young and I have many more years to live.
  • I was diagnosed with fibro by a rheumatologist about 10 years ago. That finally answered many questions about recurring pain in muscles and trouble walking. Many doctors had dismissed it as restless leg syndrome and other ailments. My wonderful family doctor answered a lot of my questions and assured me fibro was a real sickness that he would try his best to help me with. He recommended the use of a hot tub. My husband bought it and the soak in it is wonderful. Two years ago I was diagnosed with FMD, a rare disease of the arteries that causes extreme headaches(my affected arteries are intercranial and to the kidneys). I have had numerous TMI's due to this condition. My quality of life is very affected, but I thank God each day that is given me. Some are almost beyond going days but if I pace myself I can usually make it. I do have wonderful family support. A lot of people don't realize what a hard life we who suffer from these ailments have.
  • I hate it when you tell your family or Dr about how you hurt and they think it's all in your head
  • I had this forever it seams I was reading that someone else had issues with their feet and feels like they are burning. I too have this and take meds for restless legs. I found a bit of relief when I pile as many blankets as I can on my legs. I then found a few years ago blanket that has different type of stuff in it glass beads and stuff they make bean bag chairs out of in side,
    I ordered on and it is 20 lbs I just lay it across my legs and in a few minutes relief, It has even helped with flair ups of my fibro. but I can't live under a blanket! I am on Cymbalta but it doesn't help much takes the edge off so I can function but at night I take 500 mg of naproxine ( like taking 3 alieve) my Cymbalta and a sleeping pill or I don't sleep Why can't they find something that works and no side affects or a cure?
  • Hi, I too have fibro and have had for for 5+ yrs. I was diagnosed in 1998 with osteoporosis and osteoarthritis. I was a Registered Respiratory Therapist and worked in hospitals. I loved my job and had to give it up due to my condition. My self worth was badly effected when I was forced to make the decision to quit. In 2005 I was diagnosed with fibro. I have read everyone's comments and I experience many of the same symptoms, however , for me when I have a flare up it hurts to have anyone touch me , sometimes I can't even tolerate the air from my ceiling fan to blow on me. It hurts to have even the slightest touch on my skin. I feel as if my nerve endings are extremely sensitive. Does anyone else have that symptom? I also have the muscle pain as well as the debilitating exhaustion. It is so very hard to stay positive. I too have a very supportive husband. I thank God every day for him. I tried Lyrica, but it caused terrible tremors in my hands. So I just try to pace myself. If I keep my beautiful twin 2 yr old granddaughters one day , I know the next day I'm out of commission. Traveling is especially hard on my fibro. I find myself wanting to stay home all the time. Even going out to dinner or the movies doesn't appeal to me. I hate what this very Progressive disease does to our minds and bodies. God bless all of you who are living with it. And thanks for letting me share.
  • I too have fibromyalgia. After many years of all kinds of symptoms including severe knee pain and many exray's later there was technically nothing wrong with my knees to cause the pain I was having. Now my pain moves around either sec. by sec., min. by min., day by day, week to week, month to month there is no rhyme or reason to it. It's just one big surprise. I have to switch sides during the night because my hips are sore. The worst is when it hits the nerves in my teeth and my whole jaw starts aching and hurting and It feels like when I used to get my braces tightened when I was a teenager. I take motrin 800 for it but sometimes it can last for months. My pain specialist tried me on lyrica but I had side effects and because of the severity of my side effects he would not try the other nerve meds because they were in the same family known to have the same side effects. My knee pain was so bad I was crying constantly and could barely walk. I had a scooter and still use it for long walks. I was put on a Butron Patch and I change it once a week and it saved my life. I did not want to be on constant pain meds but my quality of life did not exist and I had a 7 year old son who needed me. I have not regretted it and have not had any side effects and I have been on it now for 3 years now. I also have something to take for breakthrough pain. About 1 every 3 months I will have a day that the patch just doesn't cut the pain. If I did not take these meds I would be in the hospital hooked up to some anyway so for me it really was the only choice to lead a normal life as much as I can anyway.
  • @karen63
    Sorry so late responding I just read your comment.
    That's the biggest thing is that your skin hurts if my son bumps in to me I will yell out and remind him he has too be careful. My pain specialist always pushes into my skin in certain areas every time I see him to see how sensitive my nerve endings are since the last time I saw him and I always go through the roof. He knows exactly where all the fibro points are. Thats how I was officially diagnosed. I was put on Social Security about 2 years ago because I could not work anymore due to all the meds I was on and the pain. I too am always tired so I take naps. I am supposed to take it easy so I don't get tired out. But how much more can I take it easy.

  • I too have FM, I was dx over 10 years ago. I was on so many meds for this and RLS etc. The hard part was never knowing how I would feel so I couldn't plan anything. It got so bad in the last 5 years that my husband sold my car. (I couldn't get in and out of it)
    We had to build ramps for me to get in and out of home. I found if I heated fleece blanket in dryer and placed around area that was hurting it seemed to ease pain some.
    I finally found an awesome Rheumatologist and he has helped me a lot. But all the meds still made me snappish at family, hurt so bad I couldn't stay all night in one place etc.the brain fog was and is horrible. My husband bought me a walker in 2013. Finally a year ago my daughter told me about Plexus Fast Relief. I thought if all the Rx couldn't help why would this. I bought 2 months worth it has 60 day money back guarantee and I thought "what do I have to lose".
    I'm so glad I did, I'm now off 8 Rx. No. more pain patches, Vicoden, hydrocodone, and I truly feel like I'm getting my life back. I still have bad days but not where I can't do things. I've even been able to use steps and now I drive a 4x4. Lol. I still take 3 meds for FM, I thank God for my Dr. And for letting me find Plexus. We are all different and I can't help but share my testimony, if it will help give anyone else relief it's worth it. I signed up as a preferred customer so it would come automatically (I was scared I'd forget to order). I'm now an independent ambassador #242862 and I faithfully take the fast relief! nerve, fast relief, vitamins, and slim for my sugar.
  • Hello. Have never commented here before but reading the other comments makes me feel like there are people out there just like me, suffering in silence. As a nurse, I know the stigma attached to FM. Patients are regarded as drug seekers and it is not fair. If most of the people I deal with on a daily basis could feel what I feel, they would understand. My doctor is doing everything he can to help, but my trigger points get progressively worse. I know if I lost weight it would improve my symptoms, but exercising results in me being in bed for days afterward. I feel like there is no solution, no relief. I try not to feel hopeless but it is hard not to. I love being a nurse and fear that I will not be able to work much longer because the pain that the constant motion causes is almost too much to bear.
  • I just found out last year I have it and I hurt all the time a take Cymbalta and it helps a little bit I am always tired and I also take pain pills to help but it just takes the edge off I used to play softball and I was always active now I can't do any of those things because I hurt all the time
  • This is a crock...I was officially diagnosed 2 years ago after years of "it all being in my head" while it was still between mild to moderate in severity i contracted shingles last year and it kicked my fibro in to full blown severe with full flares i have never experienced prior. I am absolutely convinced that there is a progessive deterioration of the nerves system that is increased with any new tramas added to your body. It's like your body becomes hyper aware trying to protect it's self but really just makes you more and more miserable
  • I recommend trying gabapinten. ..has worked better than narcotics and antidepressants for me can function enough to keep working.
  • I have had Fibro for 6+ years as a result of back surgery. Lyrica is my life saver. As for exercise, swimming is all I can do and it does help. FM is not an imagined disorder or an attempt to get drugs. It's real. Some days I hurt so bad, I beg my husband to just shoot me, I feel like death would be better than the pain. Then other days...I'm good. Everyone keep up the good fight and know you're not alone
  • I take gabapentin tramadol effexor non of it helps somedays I fell like a mac truck I exercise makes it worse I walk makes it worse im so exhausted all the time I can sleep 24hrs .. I had 2 cervical surgeries that started all this .. was diagnosed by 4different dr. I get shots every 6weeks because my muscles tighten up so bad I can move my neck. I see most people end up with lupus. I have all the signs but in different WAYS but the drs keep saying I dont have it I have thyroid graves and hlab27 positive. Im just so feed up with drs. I just dont evan WANT to go . How can I be sure I dont have lupus? ?
  • @delia if u dr feels that way please find a dr like a rheumatoid one that deals with.THIS .. I too had the same problem I no ur pain and frustration. Good luck
  • I too think Fibro is progressive. Not too worried about what the doctors say as they only know what the industry tells them. My pain and experience are what I listen to and I use them to try and maintain as much of a balance as I am able. Lyrica has been a benefit after trying gabapentin and Cymbalta, though I have gained 30lbs over the past year. Not good while being in the military as I am now out of standards for height/weight. Gotta get it off.
    On another note, I feel your pain and am glad to find a community who will understand my pain and with whom I am able to share concerns and experiences without risk of being seen as a nut-job. Can anyone relate to the 25lbs-fuzzy-bowlingball-head in the mornings that make it difficult to get up off the pillow to start the day? Woo-hoo! What a feeling. At least my wife now understands that I am not just being lazy and that there is something going on.
    Any suggestions on dealing with weight loss while on Lyrica?
  • I am an rn who had to give up her job because of fibromyalgia. I had been having back,hip and knee pain periodically for years and then it started happening more often. At first I thought it was just wear and tear. I have always been very active and have never been overweight, but after 26 years in nursing I figured I had worn myself out. Then came the day when I awoke in such horrible pain I had my husband drive me to the ER. From there I saw a GP, neurologist, neurosurgeon, psychiatrist, and pain management specialist. I can even tell you how many injections I have had along with epidurals and radiofrequency treatments. Along with the fibro I also have 5 disk herniations, 2 disk desications, severe narrowing of both left and right foramin at c5, chronic inflammation of both si joints and enthesiopathy at t8-12. I am stuck in a circle of misery! If I minimize my activity I suffer with muscle pain. If I am active I suffer back pain. Gabas didn't help at all. Cymbalta has had a minimal effect. Pain meds addle my brain. And if this wasnt enough....I have gastric ulcers. I am not giving up yet ...and now that I have this forum and can read what all of you have gone through I do not feel as isolated as I did...thank yu so much for sharing.
  • As a longtime fibromyalgia sufferer, I was diagnosed 17 years ago, I have taken nearly every combination of medications available and tried all sorts of therapies. Some good some not so good. My pain is so bad my legs feel as though they are being crushed, and my skin itches horribly. Gabopentin, morphine, topirimate, reiki, aromatherapy, bio-feedback, yoga. All of these keep me moving forward.
  • @cindi my life as a nurse is very similar to yours including the many maladies.
    Feel free to email me.
    Take care.
  • Hi
    I am new to this and am really struggling. I am not new to rheumatoid arthritis. I have had diagnosed RA for 15 years. I have been on every drug for this and have had 35 surgeries for joint replacement. I have managed with the help of these meds, my family and my faith. Just recently I have been diagnosed with fibromyalgia. Wasn't prepared for this new pain and all that goes with it. I is really helpful to read what other people have gone through. Thank you.
  • I have fibromyalgia & was diagnosed about 7 years ago. I was initially diagnosed with osteoarthtitis about 5 years prios & later changed to fibromyalgia. It was frustrating because I was not being correctly treated for so l long. I believe I had fibromyalgia as a child & teen. I remember having terrible pain & headaches as a child & crying to my mother about it. The pain in my legs even then was horrible. I suffered from headaches as a child and remember having x-rays to try & figure out why. The pain I had in my back as a teen & I still have now. It is a burning pain, usually between the shoulder blade. I have lower back as well. I suffer from so many ailments so many of you describe here so while its not so nice to know, its still nice to know I'm not alone. I have tried gabapentin & cymbalta. gabapentin seemed to work for a bit & then stopped. Cymbalta gave me terrible headaches. I've had cortizone shots in both knees a few times & in my right elbow. Now, I am on Pamelor for nerve pain, Ultram for pain, topirimate for headaches, and cyclobenzapr for muscle cramps. I still work but my husband tells me he wants me to quit as soon as he finishes college. I want to cry some mornings because I'm just in so much pain & really would rather stay home & rest. I have a rather tough job. I am currently trying to get into an easier office position now. I switched family doctors a few years ago because she was the one who mis-diagnosed for so long & her holistic approach was not working for my fibromyalgia pain. My new family doctor I have been seeing for 2 years now is excellent at treating fibromyalgia. I see a rheumatologist who takes great care of me as well. I am confident I am in good hands now. I do believe fibromyalgia can be progressive with repeated flares. Mine don't seem to end sometimes. The meds seem to take the "itch" off the pain is all. Over time, the pain becomes debilitating. Certainly for me , I feel as if I could techicially retire with level of pain.
  • I actually diagnosed myself and when i told my pain management dr and psychiatrist they agreed. Gabapentin make me twitch. Oxycodon 20 mg is a savior along with prozac and wellbutrin. Its hard to find a doctor who will prescribe narcotics and even harder to find a pharmacy who carries it. Accupuncture and a good Chinese pain management dr., has been beneficial. Right now my butt, yes me arse, hurts so bad. Good Luck and God Bless
  • I also take pain pills, Topamax, savella, and trazadone for sleep... the pain still unbearable!
  • @ChristinaHS sorry for your pain. I suffer terribly too! I'm on oxycodone, savella, topamax and trazadone for sleep along with an anti depressant. This disease is horrible. I have lupus too
  • This is definitely progressive! I'm 45 and I was first diagnosed in 2000 when I was 30. This disease has gotten so much worse over the years from my lower back and neck where I have to have injections, to both my knees, to at times you can't even touch my skin in hurts so much. I did not have these symptoms this bad in my 30's, especially the skin one. It is completing debilitating and I have chronic fatigue syndrome. If I over do it one day, the next day I'm in bed all day and can't really move. It's just awful. My husband gets it but hates that I suffer. Especially when he can't fix it or help me. I can't take hot showers because it hurts my skin AND deep tissue masages are very bad for fibromyalgia. Only trigger point or neuromuscular massages is what you should be having!
  • It is definitely progressive! No question! I was dx after I was in a MVA in 1986 (26 yrs old). I was out of work then for 2 yrs but then went back to work. However, I was only able to work FT for about a yr before I went PT. I am also a nurse( seems to be a lot of us here!). I also got married, had 2 children, a house, volunteered at my kids' schools, took them to baseball practices and games, etc. I learned to adjust and save energy when I needed to and prioritize things in life. But the pain, the fatigue,etc gradually got worse and by the end of 2013 (age 43) I had to quit working and applied for SSDI. The little energy I had was saved for my kids. Stress definitely exacerbated the symptoms( I.e. Parent death, divorce, illness, surgery, etc.). It took over 4 yrs to get approved for SSDI. My fibro is SO much worse now than it was.... I am 54 now... But I am in constant pain even with pain meds, the fatigue is overwhelming, it affects everywhere on my body now, all aspects of daily living. I can't plan in advance b/c I don't know if I'm going to be able to get out of bed on any given day. And if I have something I have to or really want to do it involves an incredible amount of planning beforehand and the understanding that it will take me days to months to recover..... I have a great doctor. We try every new thing. But unfortunately this is a progressive, deteriorating disease... Sorry so long..

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