Desperate for advice & info

Hi all, I don't even know where to start. My fiance has been getting progressively worse over the last 4 years. None of the doctors are helpful. It all started with exhaustion, mood swings and severe pain & tightness in his achilles tendon. His feet were so sore he could hardly walk. Over the last few years he's developed tremors, numbness, pain in his hips, legs & arms but the worst being down his spine in his neck. He often has attacks down his spine that make him almost collapse. Last year the only thing they could pick up was that he had scoliosis & that was causing the pain but then another doctor said it wasn't bad enough to cause pain. He was then put on folic acid because his folate levels were low despite him eating plent of greens with folic acid. After some arguments they referred him to a neuro but that was very disappointing as when we finally got to see the neuro it was only a 5 minute appointment where all he said was it wasn't MS but he'll send him for a brain scan anyway???? We were both really confused by this as we hadn't even thought it but apparently the doctor had implied that we had? If anything we wanted an MRI of his back because that seems to be where the issues are! This year he was referred to a rheumatologist who seemed great at first but our 2nd appointment with him was such a waste. He did loads of tests during the first appointment and we found out he had extremely low Vit D, abnormal liver function & some bone profile issue but they've decided it's all down to meds? He was told that they are putting it down to fibro because they can't find anything wrong & to eat healthy and exercise. I have no issue with the diagnosis as I have a few friends with that condition but I'm just wondering if anyone here saw a neuro & had a full MRI before being diagnosed with fibro? We just feel very let down and frustrated with the whole situation. Our doctors don't care and I'm just at a loss of what to do next. He has been eating healthy for the past year & exercising with regular walking since January but if anything he is worse afterwards & has to take painkillers as soon as we get home. He's currently on amitrityline as pregabalin and gabapentin didn't work.

I'm so sorry this is so long. I just don't know where else to go for help.

2 Replies

  • I am so sorry to read of this, and I genuinely hope that you both can find the answers that you so desperately desire and deserve. Usually, Fibro is diagnosed after other conditions are ruled out of the equation. So what you have been through can be standard practice, however, it is always beneficial to the patient when the medical staff treat you appropriately and explain everything fully.

    I have pasted you a link below to our mother site, FibroAction, which hosts loads of useful Fibro information that may help you both:

    I want to genuinely and sincerely wish you both the best of luck.

    All my hopes and dreams for you


  • Hi darkrosieposie,

    I'm so sorry to hear about your fiance. He is lucky to have you!

    I'm puzzled they said his low Vit D level, bone profile issues, etc. are down to his meds, especially as he isn't on gabapentin or pregabalin. I would be surprised if amitriptyline would cause this, unless he's on an exceptionally large dose.

    I know you have already seen more than one consultant, but I think he hasn't had a satisfactory assessment yet. Try to persuade your gp to refer him for a second opinion. Maybe you could find a better gp, one more experienced in fibromyalgia and joint/bone problems?

    Is there any chance you could pay for a private assessment? I know most of us can't afford it, but if you can it might be worth it.

    I'm sorry not to be more help. Do remember to take very great care of yourself, as well as of him!

    Wishing you both the best of luck,


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