Is fibro a progressive condition?

When I was diognosed I was told that fibro was not a progressive condition . That how I felt at that time was as bad as it gets. 13 years on and I never thought I would be this bad. I can barely walk without aids, I've now had aids fitted around the home and had to purchase a number of small aids to be able to get by. Does any one else think they're symptoms have got worse over time not just during a flare ups?

16 Replies

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  • I would certaintly say that mine has got worse over time, I used to be able to be a normal teenager running round and causing chaos, now I'm luky if I get 10 minutes in in the street window shopping without either gritting my teeth and baring the agony (with the occasional tear getting free) or sit down for the next half hour whilst all my friends do what I used to be able to.

    I've only been diagnosed for just over a year and in that year I've founs that I can now barely walk - it's MASSIVELY effecting my confidence, and now my college work because I'm having to miss out on trips and such to galleries and collecting vital research for my course because I simply cannot bare the pain of walking around an art gallery.

    13 is young though, how old are you now?

    Beth xxx

  • I have to say I don't think it is progressive. I have lived with this for many years and did at one time think it was progressive but I do find that with gently work when I am in a really bad phase I can regain what I lost on the most part. I have a positive attitude most of the time, not at present but I do believe this helps me to push myself and regain use of parts of my body. Use it or loose it is my motto but we are all different and it affects us different ways.

    Hugs xx

  • I was diagnosed at 20 I'm now 33. When I was diagnosed I was fairly normal apart from the tiredness and pain it was manageable and I was barely on any med's. I'm now on a cocktail of pain med's and some days that barely touches the pain I feel. I'm now considering changing my job within the company because I'm struggling with the fibro fog and also the side effects from my med's. My life has changed so much in the past few years and the thought of getting any worse is scary.

  • well, i gone from over energetic gym bendy bendy, to now sitting a lot in over 2yrs 4 months gone from ribs and back,legs buckling sciatica, neck tingling pain etc etc tons and tons of stuff to gradually now not much strength, weakness, painful feet, hands, debilitating flares,

    walking or standing and in Ques is hard have to hold on, balance fog, memory etc etc all over numbness keeping me laid up bit like having epidural and your body not yours.

    so i say to me yes it is but with other things that add to it is possible that is a contributor.

    who knows now where it goes only those with possible fibro alone and had for many many years can help and i think everyone is different so guess it does or it does not.

    I use a walking stick when out and when watching my daughter at football matches i now have a chair as its vertually impossible to stand longer than 5 mins.

    I work and keep focused the best i can but am laid up as cannot drive at all with suffering.. planet zog nog xxx

  • Fibromyalgia is not a progressive situation, it is not classified as such. However, where there are other confitions/illnesses present, it can feel like our condition has worsened when other symptoms come into the equation.

    Also with Fibro we can go through spells of being well managed and then ghastly times when we have every symptom under the sun. We tend to think we have deteriorated when this happens but it isn't necessarily so because of the other factors.

    Also inactivity, fatigue, pain, Diabetes, Asthma, Arthritis etc can all affect our general well being, but we tend not to recognise this fact and we feel that it's our Fibro that's the culprit.

  • i was diagnosed about 3 yrs ago, back then i only had the occasional back twinge and neck pain, i have now found that, it is now spread to my ribs shoulders and feet, i used to be energetic but find that i now need to sit or lay down more. I work and over the 3 yrs i have reduced my hours considerable to accomodate my pain and tiredness, and i am finding it harder to do my 5 and half hour shift 3 times a week, because my job entails standing, after this i find that i am having trouble standing up after sitting down for which i never had a problem with before.

    I find that with my meds i am able to sleep quite well but still have nights were the pain wakes me and i have to get up and move about so hench the next day is what i call a bad one, i feel that this is progressive as i have more bad than good days, but i won't give in, i stay positive and fight against my pain, no matter how bad it makes me feel, positivitty and staying focused is all that we can do, xx

  • I can understand what you're saying Hobble and I'm inclined to agree, but the medical professionals say it isn't progressive. Perhaps they need to live with it and make a judgement. I find I have improved on some counts and other symptoms make me feel that I am worse, but I do have other conditions so this might be the influence?!

  • I think it stays the same, I was told it wouldn't get better but it wouldn't get worse, you do get flare up's which makes it feel worse but mainly I think the condition remain the same, even though it doesn't feel like that sometimes. The level of pain varies from day to day & you genially know when it's going to be a bad day, but no I don't think it get's better or worse...

  • I think he Fibro stays the same but our tolerance levels decrease especially if you have other problems like osteoporosis / arthritis/ etc. It is very difficult to distinguish between them all at times the nasty ones take the lead and make life gruelling.!. I still have problems distinguishing and controlling pain attacks and I have been at this for a dozen years or more.

    Take care guys x gins

  • all i know is that over the last couple of years i have gone down hill dramatically.

    xx

  • Do you have other illnesses or conditions Sharon because this could have a bearing on your health going down hill over the last few years?! It may not actually be your Fibro but your general health if that makes sense.

  • yeah that makes perfect sense i have a long list of problems but my rheumo puts it down to the fibro, just says its a progression of the illness, but as we all know not all rheumo's are as bothered as they should be

    xx

  • Me too. I also have joint hypermobility so maybe it's that, that has got worse. My blood tests have been abnormal for years and they just say its the hypermobility but have never followed it up. A lot of the pain I get is in my knees, ankles, hips/groin, elbows, hands and lower back. Maybe I need to get my joints checked?

  • Me 3 iwas bad enough when I was diagnosed 19 years ago I couldn't walk any where I could shuffle around the house couldn't lift a kettle and still can't,

    I was told it wasn't hireditery but my mum had it I have it my youngest brother has it,

    My husbands friend has it his ex wife has it and their 2 sons have it and have had it since they were small the eldest was about 5 when it started and the youngest was about 4 maybe 5 when his started, they are almost the same age as my 2 youngest daughters .my youngest has had problems with her left hip since she was born but “its not hireditery ” well that's what I was told but I always thought it was .

  • I think it gets worse, the pain was not in my whole body 20 odd years ago. Now it is absolutely everywhere. What it has done to my shoulders and arm in the last 2 years makes it difficult to use at all especially left one. Just because doctors say it isnt progressive, doesnt mean anything. Once upon a time they thought it was all in the mind. Well they now no that they can actually see the pain site in the brain on Cat Scan alight with fms patients. The one thing that has been established is that they do not know much about FMS, and what helps one person does not help another. So who know what the future holds.

  • From my own experience it is progressive, however, I guess if you find the right meds for you then you can maintain a balance or even feel better xx

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