Diagnosis Help

[BuddyDolly]

Hi there, I have been suffering for over 2 years with extreme fatigue which was put down to mild sleep apnoea (sleep clinic attended) but does not really justify the fact that I need to go back to sleep as soon as I awake in the morning or that I fall asleep every afternoon whilst at work. I also suffer horrendous night sweats. I started to notice aching arms which over the past 6 months has become intolerable with my muscles so painful in my upper arms that I cry when I try even the simplest of tasks - washing my hair, lifting my arms above shoulder height, dressing. My upper arms (both sides) constantly ache even taking strong painkiller offers no relief. Several visits to the doctor and x2 xrays (inconclusive) I was put on HRT and antidepressants to help with my anxiety and depression as well as the aches and pains!!!! The pain became so bad and with no relief from HRT I returned to my GP. She suspects Polymyositis - I have never heard of it but when she listed the symptoms against mine, I think she may be right. The only problem I have, she is not sure about it herself and whilst she has requested several blood tests, she does not really know what else to suggest. I have been given no pain relief as she wants me to stop all medication prior to the blood tests next week. I am literally unable to function with the pain - can anyone offer any advice? I have been taking 100mg Volatrol tablets or Nuromol just to get me through the night.😪

[Jo-Goode Administrator]

Hello,

There is a list of Myositis specialist clinics in the pinned post (right) that your GP can refer you for the diagnosis process; there are two NHS Myositis centres in London & Manchester & a few doctors who specialise in Myositis (it's a rare group of conditions). The pain relief you have been taking contains an anti-inflammatory which could affect blood results somewhat, so probably why you have been told to stop; paracetamol on it's own would be OK to take, as would not affect the result. 200mg 4 times in 24 hour period, own brand works just as well & far less expensive. After the bloods are done the GP could prescribe something for pain relief while you waiting for an appointment. I was diagnosed aged 25 with Dermatomyositis, 29 years ago & treated with various medications over the years. I run a Myositis group on facebook if your a member facebook.com/groups/themyos...

Kind regards, Jo

[BuddyDolly in reply to Jo-Goode]

hi Jo, I have joined your FB group. I cannot tell you how grateful I am to be a part of it. It is informative, uplifting, supportive and in my darkest moments it has proved invaluable as I know that someone will be able to offer comfort and advice. Thank you xx

[Anniebumps]

Go to a neurologist. They can diagnose polymyositis. I have it. Took eight years to get a diagnoses for that very rare disease. Ultimately I had a muscle biopsy in my upper arm and that was that. I now take Gabapentin for pain. Azathioprine is the drug that finally moved my disease into remission but it is different for everyone. After the diagnosis go to a Rheumatologist for treatment. It gets mistaken for other things. I now have muscle loss and weakness in my body because of it. Don't wait to seek help.