Progression/worsening and remission!!??

Hi, they tell me fibro isn't progressive but I assume they are just meaning it isn't degenerative/not terminal as mine has been getting worse since the first symptoms 7 years ago. I would love to know the reality of this, has anybody else's come on over time and is it likely to keep getting worse?? Just before I was diagnosed it reached its worse to date and I remember sobbing to my husband asking "what if I never wake up without pain again" and sadly this has come true. I would also love to know about Remission!!? I have seen a few blogs where people have said they were in remission and I love any advice in how to acheive this?? Thanks in advance and gentle hugs, Helen x x x

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  • Fibro is usually not considered to be medically progressive because, with effective treatment, your symptoms can stabilise or improve. This is unlike medically progressive conditions that get worse no matter what you do.

    However, many people with Fibro find that they do get worse over time, because many people with Fibro struggle to get an accurate and comprehensive diagnosis and access effective treatment.

    People with Fibro who struggle the most to get control of their symptoms, no matter how comprehensive their diagnosis, are often those with other conditions not under control or those who struggle to use what treatments are on offer - e.g. single parents of young children who can't take any time to deal with initial medication side effects.

    Because of all this, remission is rare. I am one of the fortunate people to have achieved a level that could be called remission, where I do not get ongoing daily symptoms without a need for regular medications. I do still have Fibro, get flares and have to maintain certain treatments, such as physiotherapy, myofascial release, pacing and stress management. I kind of muddled through to get to where I am, only realising afterwards why and how certain treatments, such as physiotherapy, helped me. I have used a real combination of treatments, dealing with comorbid conditions (e.g. IBS, hypermobility, myofascial pain), doing physiotherapy and getting myofascial release, implementing lifestyle changes and then utilising medications.

    Hope that helps.

  • I think Lindsey has said it all Helen.

    I have to admit that since I was diagnosed ( also diagnosed with Sjogren's Syndrome ) I haven't had any periods of remission . It's been around 5 years in total for both conditions now , and I have got steadily worse .

    Most people have flares, where their condition gets worse for a while and then manage to get it back under control for a while.

    My condition has got progressively worse , more pain, more fatigue etc. And I'm now unable to do most things I was capable of a couple of years ago.

    It's not helped by the fact though that I do have stomach and bowel problems that mean I can't tolerate the commonly prescribed medications , and exacerbated by the fact I have Agoraphobia so haven't been able to attend any long term therapy or a pain clinic for some time now .

    I also have clinical depression , IBS , an irritable bladder and have panic and anxiety attacks so I find it hard to get to grips with one condition as they all tend to kick off together.

    Having an understanding and informed GP helps enormously though :)

    Hugs

    Helen xx

  • I dont really have remissions, on diagnses I was told Ive probably had fibro for 30yrs, Ive other health conditions to,but ive been very in in the last 3 plus yrs, the doctor at the pain clinic has told me I now wont get better, and the pain is going to very difficult to control

  • Thanks for the advice, I think I need to start seriously taking care of myself properly :)

  • Hi Helen

    My experience has been a little different.

    I was originally diagnosed with CFS although I personally think it was probably fibro because I was also diagnosed with back, neck, shoulder and elbow pain and saw various NHS consultants for these conditions including rheumatologists and physiotherapists. That was 21 years ago. As Lindsey said, there are a lot of other conditions that are common amongst those of us with fibro. Over these years I have been diagnosed with Hypothyroidism and have been on treatment for this for about 10 years.

    I had 3 years of a very good acupuncturist and Chinest medicine practitioner (for which there is very little in the way of clinic evidence but I believe it helped me). I changed my lifestyle totally. No alcohol, no cigarettes and a very healthy diet which I stuck to rigorously. I wouldn't have even prescribed medication at first, but then did agree to a low dose of anti-depressants for teeth-grinding which was causing dreadful head and neck pain. I gradually increased my exercise tolerance until I could do a full 50 minute 'step' class as was the new thing in those days.

    I went back to work full-tiime for nearly ten years.

    Then it hit me again. This time, I didn't have access to the same therapists and I was nearly 15 years older. Whatever the original diagnosis and whatever the reasons, I couldn't fight back this time. I've been ill ever since.

    Your question was whether there was any chance of remission so you can make what you will from my experience.

    Christine

  • It is very difficult to do but you need to learn to "pace" yourself and include relaxing activities into your daily schedule (eg walking, swimming, baking, gardening, yoga). I plan my days very carefully (forward planning seems to help, so there is no stress or surprises) If you "feel like" you would like to play with your son at the park (rather than do the ironing!) -then do it! Don't be afraid to ask for help from others! The symptoms never go away but it is possible to manage them and "keep them at bay" by pacing yourself. I am now back at work part-time (12hrs/week) and take no medication. I know that if I stray from my daily routine then my symptoms will worsen, so this makes me more determined than ever to stick to doing the things that my body "is happy with". I believe that people who say they are in remission have actually achieved this "happy balance" and when they dare to stray from this, then their symptoms return. To "conquer" FM you need to be very strong and have to be prepared to stick to your daily plan not just today but for the rest of your life - in effect you are adjusting and adapting to a whole new lifestyle. GOOD LUCK !

  • to be honest I think we re all differant were fibro doesnt effect some people greatly, in others it can be devasatting

  • Thanks again for all the replies, (I'm going to have to read them a few times so it all sinks in!!!) really appreciate you all sharing your experiences x x x.

  • All I can say is my symptoms are definitely getting worse and I have only recently been diagnosed although I have felt unwell for years but not as bad as now. I hate feeling like I do and would give anything to be how I used to be.

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