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round and round in circles

Posted , 3 users are following.

loxie
loxie

I've been trying for over four years to get my GP and various consultants to come up with an answer for my pain/fatigue/etc syndrome.  Various GP's at my group surgery have dismissed it being due to fibro (some not even believing FMS actually exists!). Been referred to a neurologist, rheumatologist and ortho surgeon.  Various MRI's, ultrasound etc. determined I have OA in my neck, plus ruptured tendons in shoulder/bicep (rotator cuff rupture).  Neurologist ordered MRI which showed the mild OA in neck.  Rheumy said not fibro but could be excess iron in blood, ferritin blood test ruled that out.  She referred me for ultrasound which showed ruptured tendons.  Referral to ortho surgeon who said ruptured tendons wouldnt necessarily be causing pain but could be OA in neck causing pinched nerves etc.  Referred to physio.  Finally got to see physio today and he sat and talked to me for ages - no actual therapy but the chance to discuss all the issues.  He was adamant that the MRI of the neck showed no pinching or explanation for the upper arm pain and that the rotator cuff rupture wouldnt be causing the widespread pain issues I have.  He had good knowledge of fibro and is experienced at dealing with patients with it so questioned me about fatigure, intolerance to bright light, loud noise, etc., stomach upsets/IBS, and asked about the chronic fatigue I experience.  At the end of a long discussion he said he was absolutely convinced I have fibro even though my GP's deny its existence and the rheumy said the pressure point test meant I didnt.  He also said there is a test that can be done to identify it, NOT a blood test but a test of spinal fluid which shows the dopamine levels which will be much lower in FMR patients than others and is now the 'go to' way of diagnosing rather than the pressure point test which is unreliable at best.  Whilst he said obviously he isnt a doctor and does not therefore have the authority to issue a diagnosis, his recognition and explanations were like someone turning on a light!  I actually started to cry while we were talking, just the emotional relief that somebody understood and finally acknowledged that I wasn't making it all up and that single 'mechanical' issues like mild OA in the neck werent responsible for the whole range of symptoms I've been struggling with.  There's hope out there for anyone with this god awful syndrome.  If you are having trouble getting a diagnosis, push your doctor into discussing the tests my PT mentioned - which he says can now definitely rule it in or out better than vague pressure point exams.  I'm still in pain, still exhausted but so much happier than I was before

0 likes, 6 replies

6 Replies

  • Meg53
    Meg53 loxie

    Posted

    Hi Loxie, I totally understand what you have been going through, I have done the circle around all the specialists, with usual it's your head etc. I have now found a rheumatologist who seems to understand fibro, as much as any one can. She told me yesterday that there have been experimental scans done that show certain synapses in the brain light up differently in  Fibro patients to non  Fibro patients' brains. It is early days in this research 

    but there is hope out there for gaining more information and for them developing a clean drug that controls this disorder.

    It sounds to me you have the symptoms of Fibro. Do you get the disrupted sleep and the hideous brain fog?

    Good luck with getting the diagnoses and them maybe you will get some treatment that may  help wth the hideous symptoms you are experiencing

    Meg

    • loxie
      loxie Meg53

      Posted

      Thanks Meg.  Yes my sleep was terribly disturbed.  My GP prescribed amitryptaline which I was taking late at night.  It did make me sleep but I had major problems with vivid and aggressive dreams while on it and was waking up exhausted due to overactive REM sleep, so I had to stop taking it.  I was referred by my GP to a neurologist for the memory/cognitive issues, he said I didnt have any neurological issues for the problems and put it down to pain/exhaustion interrupting my thought processes, and it was he who referred me for the first MRI which showed up the mild OA in the neck.  The PT I saw yesterday said that my type of word blindness - ie I get half way through a sentence and cant remember the word I need - is typical of fibro and not dementia or memory problems.
    • Meg53
      Meg53 loxie

      Posted

      I suffer from the word blindness too and my specialist said it is the dreaded Fibro. It is wonderful news you don't suffer any neurology problems.

      My specialist is trying me on different drugs to help manage the pain and sleep issues, so I will see what works. I take Panadol Osteo three times a day for the Osteo arthritis, which certainly lessens the joint pain. I think I am a walking experiment but I am hoping for the best it's better than the alternative.

      Good luck with your search for help and wrangling doctorsbiggrin

      Meg

    • ihavenonickname
      ihavenonickname loxie

      Posted

      fibro, not dementia...wonderful ..that doesn't sound right, but you knowwhat I mean.

      My neurologist explained that the body releases melatonin in preparation for sleep but today's lights and screens inhibit this release. I now take melatonin 3 mg two hours before bedtime. It tooks a few days to develop the rhythm.

    • loxie
      loxie ihavenonickname

      Posted

      smiling here - I know what you mean - bit of a Hobsons Choice - but yes, the cognitive issues being due to fibro is way more preferable than it being the onset of Alzheimers or Dementia, or even a brain tumour!  The PT I saw did say that Mindfulness has had very good results both in terms of mentally managing the pain and also helping with memory clarity.  I took a mindfulness course some years ago to help with stress but at the time didnt really gel with it or the person taking the classes, maybe I should try again however.  I will ask my GP if I can get referred on the NHS as private courses are quite expensive.
  • ihavenonickname
    ihavenonickname loxie

    Posted

    of course you are...you now know that this is not in your head.

    Renember, somebody has to graduate at the bottom of the class...wink wink

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