Well that's it!

Hi all

Been for my appointment with the rheumatologist and he's said I have fibromyalgia and said he would be very surprised if my vitamin d levels are low as well.

Another mri for my neck next month and if all is ok with that then I'm going to get to the gym to try and help my muscles with this horrible disease.

Don't think I will ever get used to the feeling of this overwhelming exhaustion.

I refuse to reduce my work hours from 30 a week as been doing it for 6 months now.

Any tips greatly received.

Kate x

7 Replies

  • Hi Katie72,

    I've had Fibro for about 5 years but only diagnosed with it three years ago so I'm still new to it and know exactly how you feel.

    To be perfectly honest with you. I reduced my work hours to a point where it not longer made any sense to continue working as even those hours were difficult for me to maintain as the pain, exhaustion, headaches, IBS and pain had started to take over my whole life.

    I eventually put in for voluntary redundancy and was turned down. I put it for medical retirement/redundancy and was turned down so eventually, I had to take long term sick as I was physically unable to continue working, until I was made redundant through a re-structure. It later transpired that I had other conditions going on which were revealed and diagnosed over time so all did become clear.

    I really hope that you do not have the same experience I had but I would also urge you to be careful in the gym as Fibro appears to respond to gentle often stretching type of exercises like Pilates, Tai Chi etc and not so much to circuit or reps.

    If you discover from your MRI that you do have a problem with your neck as well - I'm assuming their checking to see if you may have some sort of cervical stenosis. If so, hitting the gym before you know for sure could have a detrimental effect so take things slow until you know for sure.

    Your determination to face this condition head on is admirable and many of us felt the same way when we were first diagnosed so do let us know how you get on. Don't give up, continue to learn about how the condition affects You and stay strong. Wishing you all the very best.

    Fight the Fibro!

  • I was diagnosed with Cervical Spondylosis about two years ago and had two root nerve procedures last year which has not really helped as the pain comes back. Also ostreoarthritis in the left foot and steroid injections in the hospital. Helps for a while. I am now awaiting to see a Rheumo as convinced I have Fibro, long term Hypothyroidism. I have read that whilst claiming for ESA it you have other conditions other than just fibro (I said just in the literal sense only I know it is debilitating), that you stand a better chance. They took me off it last year but now back on it.

  • Hi Marmaris,

    That sounds terrible. How often do you have to have the steroid injections?

    I'm really feeling for you but you've also mentioned that you're having a problem with your foot. To be honest. I know that nerves do fire in wierd ways but would it be possible to check for spondy in any other part of your spine - more likely your lumbar region? I've read that often there's more than one problem site on the spine - not to scare you.

    I was also recently diagnosed with Constitutional canal narrowing and spinal stenosis L3/L4 and L4/L5. Osteopod has stated that I've got to have an 'open back op' which I'm really not looking forward to.

    I wasn't even given the option of injections as apparently the damage has been left undiscovered and unchecked for so long that I'm well past the stage of using 'conservative' management.

    If the injections are not really working for you, would you consider another procedure? I know it's scary but if it'll give you a few more years of flexibility, mobility and less pain, it may be worth considering.

    Do let us know how you get on. All the very best.

    Stay strong.

  • Hello Reykua thank you for your post. Up to now I have had about 4 steroid injections in my foot, the last one a few weeks ago under ultra sound guidance. Painful but has helped but not cured. I see the specialist in a couple of weeks time and he has mentioned an operation if it does not last long. To be honest I have an open mind if it helps let's do it. With regard my cervical spondylosis I think mine is somewhere around the top vetebrae 5 and 5 and thinning of the cartilage which is pressing on the spinal chord nerve sometimes. Again, helps but not cures. First time put needle in the back of the neck and the second time in October side of kneck. Was in pain after that one, still not gone. Hope we can all get well. Wish you luck on your journey. Diane.

  • Hi marmaris,

    I personally think you're a brave soldier because I absolutely hate needles and will definitely avoid them if I can. I almost had to be sedated to go for accupuncture - which basically defeats the purpose but proves how desperate I was to assuage the ongoing awful pain.

    It's great that you keep such an open mind and are willing to try out procedures. Please let me know how you get on after your MRI. I'll also keep you informed about my journey to pain relief. I will hopefully be having my op in May so, here's hoping everything goes according to plan.

    Stay strong - as always and Fight the Fibro!

  • Thanks for your replies. I have previously had surgery to c6 -c7 for cervical stenosis. Unfortunately been in more pain with that since having the op to what I had before. Have nerve damage so have had the injections - 1st worked well, 2nd not at all.

    Finding the overwhelming exhaustion hard to deal with, have slept till 5 today from about 10.30 last night. That's after waking a few times with the stiffness and pain from laying in the same position for too long. Then there's the paid that just come out of the blue and attack any part of my body.

    Am really struggling to deal with I it today.

    My husband hasn't said a word about it since I got my diagnosis confirmed.

  • I am so sorry to read that, but I wanted to wish you all the best of luck with your exercise regime. I have arthritis in my knees, spine and neck and also cervical spondilosis in my neck and also sciatic nerve damage. I undertake a daily exercise pattern (of gentle exercise) and I find it very useful.

    Good luck


You may also like...