Running out of patience with fibromyalgia

Hi, 

I'm 25 and live with fibromyalgia, hypo-thyroidism, auto-immune urticaria and angiodema. I work as an ops manager (which can be stressful), try to go to the gym 4/5 times per week and eat a healthy balanced diet. I don't feel sorry for myself (because why would I?!), I'm pragmatic and I get on with it, it has taken me 7 years to get here and I won't have it taken away.

I need to know what alternatives are out there to manage these conditions. I'm sat here, sprawled on the sofa (missing spinning 😩) because my back is playing up, my physiotherapist glazed over this morning because I said the word fibromyalgia and essentially told me to get over it and to be perfectly honest I'm sick to death.

I take nortryptyline, tramadol, liothyronine, levothyroxine and fexofenadine, I have Achilles tendinitis, an injured ACL, issues with my it ban, nasty pain issues with my hands and wrists and I can't fully extend my shoulders. I'm sick of drugs, I'm done with pain, I'm bored of derisive doctors and I need to find something else to try before I lose my mind. 

Apologies if I sound like a brat, I'm beginning to lose the plot.

Any recommendations are gratefully received. 

Many thanks,

Amy

6 Replies

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  • No disrespect intended to the Pain Concern group but I strongly recommend you join the Thyroid UK group on HealthUnlocked. You'll find them here :

    healthunlocked.com/thyroiduk

    Fibromyalgia may be caused by inadequately treated hypothyroidism and insufficient minerals and vitamins. Angiodema can also be caused by insufficient treatment for hypothyroidism. There are nearly 40,000 members on the Thyroid UK forum, and many of them do get a lot better with the right kind of help, although I realise hypothyroidism has to be managed, it can't be cured.

  • I was just about to say the same as HB! I was diagnosed with fibro - but it looks like it may have been misdiagnosed hypothyroidism. The Thyroid UK forum is a great help in pointing you to useful info. I know you say you're taking levo but it may be that alternatives to levo are best for you. Please have a look at that forum, post there and see if you can find something to help you. Good luck!

  • Back pain, tendonitis (especially achilles tendonitis) and other tendon problems - all point to the possibility of spondyloarthritis, which coincidentally has painful enthesitis points that pretty much correspond to fibro tender points.   Check out the signs of inflammatory back pain from the National Ankylosing Spondylitis Society website nass.co.uk/download/50699f86256de  and if you think your pains and problems fit, then absolutely insist on a rheumatology review.  Ankylosing spondylitis and other forms of spondyloarthropathy are much more treatable than fibromyalgia in a lot of ways, and it does seem that there are a lot of people who initially get diagnosed with fibro when really it is inflammatory spondyloarthritis.

    Of the meds you are taking, none of those are specifically antiinflammatory in nature so won't do a lot for spondyloarthritis (which should noticeably respond to NSAIDs or steroids, but less so to even strong opiate painkillers).  For what its worth, you are in the right age group for spondy as well (one of the criteria for diagnosis is that it starts before the age of 30, but often in early 20s or late teenage).

  • Hi,

    Know exactly how you feel!I find that the painkillers are my enemy and not my friends.I stopped taking mine and went onto cannabis/hemp oil.Feeling much better than I did and more able to cope!

    Good luck!

  • See an Alexander Technique teacher.  Abandon the gym for the moment and learn the new movement skills an Alexander teacher can teach you.  Google "muscle trains". Physiotherapists tend to be one size fits all and have a high failure rate for not run of the mill conditions.

    Worth looking at Yoga.  Fibromyalgia can be diagnosed when you have over contracted muscles.  Over contracted muscles are painful and need a great deal of physical help to return to their uncontracted condition.  A sports Massage may be useful.

    It is a matter of investigating to see what helps and what does not.  There may be no cure, but there are things you can do that can help you manage the condition better.

    Hope this helps

  • I suggest you consider NDT instead of synthetic liothyronine and levothyroxine 

    Far too many hypothyroids suffer hell on the synthetic crap yet recover their health on NTural Dessicated Thyroid 

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