Have you got progressively worse? - Fibromyalgia Acti...

Fibromyalgia Action UK

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Have you got progressively worse?

Bumble profile image
12 Replies

I read the blogs and am shocked at just how bad this fibro can be for some people. I feel so lucky that I can just about manage mine...yes, there is pain and all the other bits and pieces that go with it...but fibro is all I have :) Just want to know if it gets worse over the years? Did you start out with it in a mild form and now find ourself completely housebound? I guess i just want to know if I'm going to get worse?

Take care all and enjoy the sunshine if you can x

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Bumble profile image
Bumble
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12 Replies

I started out with the symptoms 20 plus years ago. I got properly diagnosed in 2010 and i have to say although i am luckier than some, having lived with pain and tiredness most of my life if i get the energy i will do as much as possible, simply because i know i will have days where i just have no energy, in too much pain and at sometimes cant even stand on my legs. The back pain and the bowel problems are the most severe but my legs are definately getting worse. I am sorry to say i am still learning but from what i am experiencing and what i been told you will get worse.

in the last 3 yrs ive gone from running around like a mad woman to some days barely being able to walk the pains can get so bad you just want to end it all, my bowels and bladder are shot, eyes now again have double vision getting new glasses again will cost £700, oh joys of joys

westgate profile image
westgate in reply to

lally

re your specs. try 'specs direct' theyre based in thatcham down the road from me. you give them your prescription and its apparently alot cheaper than opticians. wworth a try xx

amanda38 profile image
amanda38

sorry to say but i have also got progressively worse diagnosed in 2008. In 2010 i had my gallbladder removed and ever since i have got worse my legs have got weaker & i have had to use crutch for walking however this feels so bad lately i am considering using wheelchair more as i have only used it around large shopping centres before now :( gentle (((hugs))) xx amanda xx

dimfunsize profile image
dimfunsize in reply to amanda38

Just reading your post and I hope you dont mind me commenting, but I have had my gallbladder out too. I wonder if anyone else has this problem as well as other things x

justjane profile image
justjane in reply to dimfunsize

I had to have mine out four years since

LindseyMid profile image
LindseyMid

Fibro isn't considered medically progressive because, unlike something like progressive MS, it does not have to get worse no matter what you do. With effective treatment, Fibro can be managed. However, many people struggle to access effective treatment or are unable to make changes needed for this. And many people with Fibro also have other conditions, sometimes undiagnosed, that mean their symptoms are harder to control.

Bumble profile image
Bumble

Thanks so much for all the responses..I guess forwarned is forarmed as they say!

Gentle hugs to you all hope you get to enjoy the sunshine xx

susie59 profile image
susie59

i havent been diognosed with it for long but it has definately got worse, i could work, i could walk further and do a lot more. i have C.O.P.D. anh hypothyroidism also but i could handle it all a lot better, if i didnt have the awful pain. but love and hugs to you bumble. xxx

Bumble profile image
Bumble

Again, thanks for the responses,'i guess we just take it a day at a time.

Off to Spain tomorrow for a few days...wishing you all well anda happy weekend xxx

Abbeystead profile image
Abbeystead

Unfortunately, yes I have got progressively worse over the years, Had this since 1988 when my daughter had 4 children in 4 years,middle ones twins. I was working full time and trying to help her daily,also. Caught a virus and never really recovered, Had to give up work 1991. Was going in for 2 days then off ill for rest of week. It carried on like this for about a year and I was allowed to retire on health grounds, ME was confirmed then FM. Am houseboiund now. Managed to do a bit of gentle work in the garden yesterday. Today, am like a zombie. cant move off sette, so I'll just do as my body is telling me to do today and take it easy.

Unfortunately,one of my twin grand-daughters is getting married tomorrow but am not well enough to attend. It would be too much for me as I am in too much pain. My husband is going though. The sad part of it though is that I gave 100% love a care to my grand children, family always came first with me. Burned the candle both ends, looking after them,helping my daughter with them,having them every weekend. They were my life. Now they never come near to see me,unless they want something. Worst in the world for not attending tomorrow,but for once in my life I am having to put myself first,but at a cost. Still love them though.

Gosh I've gone on. But when you dont see anyone and start to verbalise, you inclined to forget when to stop. even though you're speaking into cyber space. Still got my sense of humour though. When that goes I'll pack in completely.

But there again you might just be lucky and recuperate. Just take it easy and dont push yourself too hard when you're not feeling up to it.

Best wishes.

Avril

Bumble profile image
Bumble in reply to Abbeystead

Thanks for the reply Avril and so sorry to hear you've had such a hard time of it. I do hope your family start to be a little more responsive to you and give you the love and attention you deserve.

take care and gentle hugs x

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