IS F.M.S PROGRESSIVE, WHAT ARE YOUR THOUGHTS?

It is noted that F.M.S is not a progressive illness, I would say the experts are wrong. I have had FMS without knowing what it was for some 30+ years from a teenager. Over the years slowly but surely my symptoms have become worse to the point I can not even work, every day activites are difficult, I would say that that is progression, what do you all think?

This is a quote from a website niams.nih.gov/

'Fibromyalgia is a chronic condition, meaning it lasts a long time—possibly a lifetime. However, it may be comforting to know that fibromyalgia is not a progressive disease. It is never fatal, and it will not cause damage to the joints, muscles, or internal organs. In many people, the condition does improve over time.'

It may not be fatal but it is life changing, the medication we are given has also added to our daily problems.

27 Replies

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  • Hi deelightful,

    As far as the medical term is concerned, no fibro isn't progressive. Ie you're not going to die from it but as far as we sufferers are concerned, yes it is progressive. It does sart with little pains or problems, then ends with HUGE ones.

    Mine progressively got worse over the course of 18mnths, being triggered by flu although, I think Ive suffered all my life, as I've always had illnesses last 2x longer than anyone else n far worse symptoms. I've never had a cold, always flu, tonsilitis etc.

  • I,ll say its life changing and yes it has gotten worse my neck and shoulder spasms are deffinately according to gp and hospital are a fibro symptom but I have only had them 4 Yeats , and had fibro for 20 plus so I think it's getting worse

    VG x

  • No I did not get my symptoms for Yeats but I have had them for 4 years,

  • I agree I believe fibro is progressive in the terms of the symptoms get worse over time. The last 3 years I have slowing been getting worse. I am now at a point where I really struggle to walk and every step hurts. Ive got a selection of home aids just so i can get by and I use crutches when I'm out and about. My kids have been a fantastic help since their dad left just over a year ago. I would be lost without them.

  • I also believe that it is progressive, mine has got worse, I would

    Like to know just how much worse it will get, or does it get to a stage

    And get no worse, I don't know, I expect it depends on person to

    Person.

    Love viv

  • Hi there

    Yes thus is wat I've been tellin my docs, mine has got progressively worse over 10 years, so it's not fately progressive, but symptoms have got worse. Thanks Michelle

  • Mine has definately got worse over the years :(

  • I definitely agree it gets worse over time. In the beginning my pain and fatigue was managable but the last 5 years I've started to find thing unmanagable instead. The last year has been the hardest and I'm finding the simplest of tasks serious hard work now

  • Fibro is treated with painkillers yes.After a time whichever meds you are on you adapt to them in your body.So I consider that Fibro feels worst as you get older &coupled with meds tolerance you feel more pain.Fibro will not kill you as like say heart disease but immobility and emotional issues make some peoples life a death sentence!

  • I too had undiagnosed fibro for many years until finally a diagnosis and I thought that would be that. Get some pills, some therapy and I'd get my life back. Six years on it has not happened and as SKIT said you grow tolerant of pain medications, or addicted and then suffer withdrawal which is horrid. The best you can hope to achieve is pain and fatigue management and stop fighting it.

    I get cross when people say 'a positive attitude will help' when they do not know what 24hr pain feels like but I do think that acceptance of the fact you are never going to be the same person again ever, helps. BUT, a big but, do not let this condition define you as a human being or you will loose your self to it and never recover from its grasp, It will truly become a downhill battle.

    I began by getting some help from the pain clinic, most hospital have one. I tried acupuncture , no good for me, but I did have some behaviour cognitive therapy which looks at how you handle pain, your thought processes and basically its nice to have someone who understands how these processes can make the condition worse, to help you.

    I have Fibromyalgia it does not have me.

    Every day is a testament to how I manage it, and that includes all the bad days lying in bed wishing I could tear my skin off! On the good days though I achieve more, even if it is a visit out somewhere, with help of course. I also do a lot of crafts which give me a sense of achievement, not suitable for all, I know but with time and patience and a constant monitoring of your self, - here's that word,- positively, can make a big difference to how you let this chronic condition take your life away - or not.

    Start by saying I can, instead of I can't." I can make a drink for myself, if you could carry it in to the living room for me" - an example of acknowledging what you can do and at what LIMIT you acknowledge you need help.

    It took a long time for me to acknowledge I needed to use a wheelchair for longer trips out. If I was stubborn and walked for the day I would flare or crash, that feeling of someone pulling the plug, but if I swallowed some pride and let my sister push me around town, I have a better day and enjoy it.

    Just a rough example of how if you approach these disease differently, with acceptance and not confrontation, it can be handled to a degree. As said it is a life long condition, as are many other's. You can sit back and bemoan your lot (been there) or do something about it.

    "little steps" "plan and pace" these are a place to start. I hope this helps a little and I didn't become too preachee. like Butcher 79 said about her kids, she wouldn't know what she would do with out them, my three grown up girls helped me, still help me, and I would never of pulled myself through the initial depressing stages of fibro if it hadn't been for their unconditional love and acceptance.

    Stephanie.

  • Thanks Stephanie,

    Well said, you are totally right. It is we ourselves that have to make sure we don't let FMS or any other related illness define us. I struggle with this every day, but I am getting there.

    I use to worry about what people said about me, especially using crutches. The famous 'You look all right, why do you need to use crutches', I use to try and explain and now all I say is I need attention, why else would I use them. I soon puts pay to any more comments.

    I can't go out without the use of crutches now, at one time I was timid in using them, worried about what other's said. Now, after 4 years of using them I don't care, sometimes I need them, other times I can manage without. I have also a scooter which most of the time I leave at home, then wish I took it out with me. We went to a summer fair and it was great, no pain, I enjoyed the day until my battery ran out, I obviously did not charge it enough, so my friends hubby pushed it back to the car. It was the best day I have had in so many years. Not having to struggle round on crutches and being in so much pain, it was great. It taught me to be prepared and my scooter belongs with me.

    I would love to hear more of your experiences, especially cognitive behaviour therapy, as much detail as possible.

    Take care and sending you some gentle hugs

    your fibro friend.

  • I waited eagerly for my appointment at the pain clinic only to be sneered at,given a prescription and discharged!! so it seems that not all towns have a decent pain clinic.I agree that if you try to start out positively in the morning it helps although I struggle most mornings as I wake with my nose on the bed springs not being able to move!

    I was meant to learn about pacing at physio this week but couldn't go to that or physio because I was in so much pain.I think it's the cold weather.I was only diagnosed this summer so I'm not sure what my triggers are but cold definitely makes me hurt....a lot!

  • I'll say that this is progressive. My illness started slowly but has now made a huge impact on my life. My hubbie left work to become my full time carer. It is difficult each and every day, but slowly come to terms with my illness and the huge impact it has had on my life. I am in pain every day and need help with so many things. I try to stay positive as much as I can but the weather doesn't help. I am lucky in the sense that my GP and my family have been hugely supportive and have given me much help. I have adaptations and my children and I have all adapted to live my life the best way that I can. I find that if you have a good support network then life can be that much easier to live with.

  • well mine is so much worse than when i was first diagnosed 15 years ago.....but is it because we are that much older? i wonder .......but to be honest i think its IS a progressive illness.

  • I think it is progressive....it affects more parts of my body the older I get. What started in my elbows now affects most of my body.....in 7 years!!

  • Angelstar59 THANK YOU SO MUCH :-) your sentence I HAVE FIBROMYALGIA IT DOES NOT HAVE ME has struck a chord with me and that is exactly how i will think from now on ...... you have just changed xlife for the better and i wish you a pain free life xxxx

  • I don't think there is a hard and fast answer to this as it depends so much on so many things. For instance what other illnesses and health conditions are present may influence how your Fibro symptoms increase or decrease or develop.

    Some people go into a remission phase where they remain symptom free for a period or indefinitely. Remission isn't guaranteed. Some people remain the same with their Fibro, whilst others deteriorate as more symptoms creep in. Circumstances can affect our symptoms, causing flare-ups etc. Some peoples' Fibro was brought on by a trauma or circumstance, so it's logical to say the same thing happening could cause an increase in their symptoms.

    To say categorically that it is progressive isn't correct because so many other things can influence and affect it one way or another. We may have deteriorated for completely different reasons than having Fibro, however these reasons may have affected our Fibromyalgia detrimentally.

  • All your comments are very educational, it so good to read all of your answer to my question. I like the comment Angelstar59 makes too,

    " I HAVE FIBROMYALGIA IT DOES NOT HAVE ME" I think if all of us even in a small way can keep this firmly fixed in our minds, then when can accomplish so much more from day to day.

    I do hope more people comment, this is so very helpful. I hope too that everyone who reads these answers gets so help too.

    thank you all. your friend xxx

  • I was lucky enough to have a short period of remission (less than a year) during which I worked full-time doing a job I loved but as a result I wrecked my health and the fibro has been MUCH worse ever since, so yes I also think its progressive.

  • Fibromyalgia is a cyclic but progressive illness; symptoms are often initially interspersed with symptom-free days. Gradually, the disease becomes persistent. There are no diagnostic tests for fibromyalgia, except the examination of the body for painful, swollen areas. However, many diagnostic tests may be necessary to exclude other diseases.

    med.ucla.edu/modules/wfsect...

    You may find this link helpful for benefit claimants.

    fibromyalgia-support.net/cl...

    disabilitysecrets.com/socia...

  • This opinion is the personal view of C. Ronald McBride, M.D., and not a categoric view on this issue, Opinions vary greatly by medical professionals as to whether Fibromyalgia is a progressive illness because there are so many other factors involved eg. the presence of other conditions etc., hereditary predispositions etc.

    It would be misleading to say it is categorically progressive based on the opinion of one Doctor.

  • I do understand that they in medicine they say an illness that is fatal is progressive, what I was trying to say was this:

    With each of us we are individuals, FMS has no cure, with each passing year everyone of us has slowly become worse for what ever reason.

    A Doctor who examined me back in 2005 for DLA was the first to ever suggest FMS and it was the first time I had ever heard of FMS, he said that I would slowly get worse over time. He was spot on. At that time I had no pulse in both my arms when they were raised above my head, now I would be lucky to raise my arms. I could hardly stand, my back was in constant spasm and was suffering from CFS/ME, I also agree with many of you when you say that other health problems we face that runs along side FMS is also a contributing factor. It is so great to know that most of use have or are increasing our knowledge of this illness, so we are all helping each other and that is so nice.

    Thank you my friends from you kindness in taking time to answer my question.

    Your fibro friend.

  • I dare say that it isn't progressive. However, so many co-morbidities may seem to make it so to the individual suffering with it all. Fibro tends to have other illnesses involved and seems to never show up on it's lonesome.

    That said, depression, more stress and anxiety and just the worn out feeling of having to cope with so much 24/7 is going to make things seem worse even on some of your best days.

    So while the condition is not progressive (like how arthritis effects joints in a visible way), the usual culprits like isolation (being home bound) from friends/family, depression, anxiety, and numerous other conditions that tend to go hand in hand with Fibro are going to make it all seem worse.

    Yep, it sucks. Such is life with my new reality, and yours. No point dwelling on the bad stuff. You either accept it and get on with life, or choose to roll over and give up. I'm not going to give up.

  • Thanks all for your nice comments. I still have flares and other medical problems that come with age. I do have some good links and books I have found helpful but am too unwell at the mo, so shall post again soon. Hugs. Steph.

  • Sorry its not a good time, yes please do when you feel much better.

  • I have wondered myself whether there are different forms of fibro, like MS. So MS can take a relapse-remitting form, a primary progressive and a secondary progressive. There are so many overlaps and a member of my family has Primary Progressive MS, so it wouldn't at all surprise me if they discover the same for Fibro (and for ME incidentally). It's just more research is needed, I expect

  • After reading all of these posts my Fibro has got worse. My partner still isnt convinced that i have Fibro...........After i had had a lumber puncture in hospital i was told weeks later that i could have a mild mild form of MS than 3 years later they say no i have'nt. Its just so confusing. :-( My partner thinks i may have Lupas, to be honest i have'nt looked this up so i dont no what the syptom are, but just lately what ever i go to see my GP with all he says now is "its all connected to ur Fibro" its like there just guessing and blaming everything on fibro!!!!! So So Confusing :-( xx hugs to all xxx

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