From fit bunny to fibro bunny

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From fit bunny to fibro bunny

Postby amethyst » Tue Sep 11, 2012 2:53 pm

Hello I’ve been reading the forum for a while now since I was diagnosed in April and am still wavering between relief at knowing what I’m dealing with and denial/questioning the diagnosis. I would be very interested to know whether any of my story resonates with you.

I have always been very fit and active (taught every kind of fitness class you can imagine for 17 years (x 30 a week at times)) including dance, yoga and running. Ironically two weeks after the last class I taught in 2007 the pain in my lower back and SI joint started – maybe it was a mechanical issue/injury to begin with, I’m not sure, but after having a two of sets of guided injections in my SI joints for the pain each time I returned to exercise (believe me I’ve tried everything from Pilates to Nordic walking to rehabilitate myself) I’d end up with muscle spasm in my glutes, hip flexors and back, a tilted pelvis, spinal misalignment and neck and shoulder pain – chiro and massage helped and I’d set off again trying to stay fit and pain free until the stiffness started creeping up on me and the whole cycle would start over.

I can be quite ok doing strenuous activity; most of the time I even feel better when I’m warmed up and moving (wallpaper stripping, modern jive dancing, hill-walking); I’m even ok afterwards but other times, I’m completely seized up and pain ridden within 48 hours. I started to realize that the problem might be muscular so went to my GP to ask why I felt 90 years old in the morning as well as everything else! He got excited about blood tests showing a genetic marker for Ankylosing Spondylitis so referred me to a rheumatologist convinced he was right. I was relatively pain free and moving quite easily when I saw her and she rejected the idea telling me ‘your definition of inflammation is different to my definition of inflammation.’ She made me feel like I’d completely wasted her time and that it was all in my head.

Six months later I literally hobbled back to my GP and he referred me to another rheumatologist who is more open minded. (Luckily) I was in quite a lot of discomfort with lumbar scoliosis, a bad pelvic tilt, hypertonic muscles and 18/18 tender points so he diagnosed FM and vitamin D deficiency. I have refused Ami for now but am taking Adcal (to be honest real sunshine seems to bring more noticeable relief than the tablets – has anyone else noticed this?)

I hate myself for having become such a ‘doctor shopper’ over the last 5 years– I’ve consulted everyone from personal trainers to podiatrists to try and understand what’s going on. Now that I know, other things such as IBS, allergies, grinding my teeth and my steady loss of hip flexibility in yoga (been practicing for 12 years and it’s so depressing going backwards – does anyone else experience this?) all make sense.

With my fitness background I don’t seem to be a ‘typical’ patient and I am lucky that I have a seemingly mild version (I work full-time, am relatively mobile apart from during flare ups but am still struggling to pitch exercise at the right level and pace my energy levels). They say that FM isn’t progressive but each time I go through a bad patch I seem to develop a new symptom and end up just that little bit stiffer than before – it makes me afraid that I will lose more flexibility and/mobility. Does any one else find this?

Thanks for reading if you’ve got this far. This part denial, part relief state is weird isn’t it?
Last edited by amethyst on Tue Sep 11, 2012 5:08 pm, edited 1 time in total.
amethyst
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Re: From fit bunny to fibro bunny

Postby masonsbarms » Tue Sep 11, 2012 4:26 pm

hi amathys, yes i did get to the bottom eventualy, i sometimes cant read long posts that are close together but i did.

it dose sond like many of us feel and the diffrent things it brings with it,

it is quiet hard to get to the exceptance stage and sometimes i slip back into the im ok i can do it myself mode.

i to suffer more when i stop, but whem i get home from work and need a rest i start to stiffen up but we cant keep going all the time or we pay even harder,

it is a very varid thing isnt it as it has many diffrent sides to it and we dont no from day to day how ists going to hit us,

i now try to do things day to day and not think to much about the future as this can be more upsetting as like you say with each down there seems another side comes with it,

its all about doing what is best for us and learning to adapt but we must keep doing what we can for as long as we can and hope there is more ups than downs.

i have found that this is what alot of people on here do keep doing all they can for themselves.

i hope you can carry on for a long time without to many downs

take care (sorry if its a bit waffaly)
masonsbarms
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