Hello! I have just come across this website and immediately signed on. I have had Graves disease/ TED for 4 years now and TSH levels are now finally OK, but I have recently been diagnosed with myofascial pain and erythromelalgia by a rhumatologist and dermatologist respectively. Whilst both specialists consider that this is related to underlying Graves disease (as no other autoimmune disease was detected from blood tests carried out), my endocrinologist disagrees. My GP has suggested that I seek a second endocrinologist opinion who could also recommend what further investigations may be required.
I have two questions for the community and grateful for response:
1. Are there others who are also experiencing similar - developing myofascial pain / other pain syndromes as a result of Graves disease?
2. Any recommendations for endocrinologist to seek a second opinion? I have come across Dr Paul Jenkins at Harley Street - any recommendations for him?
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SJR64
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If you don't know of Elaine A. Moore suggest you take at look at her Graves Disease Foundation website where there is an open forum much like this one where you can ask questions of the community and Elaine, if around, will reply privately, on a one to one, should you wish.
Elaine has Graves and went through RAI some 20 odd years ago and finding no help with her continued symptoms, and being a medical researcher, started researching this poorly understood and badly treated AI disease herself.
Elaine has now researched, written and had published several books, initially on Graves Disease and Autoimmune Disease, Graves Ophthalmology, and more recently research into Alzheimer's.
The Thyroid uk website is another excellent website to start looking at and are the charity who support this amazing forum where you will learn from other peoples experience.
P.S. I have Graves and am post RAI thyroid ablation and now manage lingering Graves, thyroid eye disease and hypothyroidism.
SJR64, '1. Are there others who are also experiencing similar - developing myofascial pain / other pain syndromes as a result of Graves disease?'
I have Autoimmune thyroid disease manifesting as hypothyroidism, not Graves disease. I was finally diagnosed with AITD in 2005. Following start of treatment for hypothyroidism, I was referred to a pain specialist for advice on my self diagnosed myofascial pain ( doctors I saw had never heard of this). I was also finally diagnosed in 2009 with Erythromelalgia. Again, something I initially self diagnosed because doctors had no idea.
I am convinced that both of these are directly connected to thyroid disease.
Thank you Red Apple for your reply! I am sorry to hear you have got both as well. Did your endocrinologist think these had a connection with your AITD and do any further checks Judging from your reply though maybe not.
Endo? What endo? Although I was referred to an endo by my GP, I only ever saw his registrar, who was told to send me on my way because levo was the answer to everything.
GP insisted on referring me to a vascular specialist for my 'red painful feet'. Vascular chap said it was nothing to do with his area of expertise. It wasn't until I convinced my GP to refer me to dermatology that I finally got the EM diagnosis confirmed by a team of (so called) dermatology experts!
For the myofascial issues I was referred to a physio at John Radcliffe hospital in Oxford, but she achieved nothing useful.
I don't think an endo will be of help for either condition, if indeed s/he has even heard of them. I know for me that getting thyroid hormone levels appropriately balanced is very important for minimising symptoms, but it hasn't been a cure by any means.
Thank you for sharing all of this. I am saddened by the cul de sacs you were sent down and the lack of holistic support which seems to be such a gap in care provision. You advice on getting hormone levels balanced sounds great. Much appreciated you taking the time to explain things.
It is a few years ago now that I went through all this, but I don't think anything much has changed from the doctor/specialist perspective. I wish I could give you something more positive, but pain medication is all I've ever been offered.
I'm not sure there is a difference really. They are both names of conditions based on roughly the same thing. But at the time I was trying to figure out what was going on with me, Fibromyalgia was ruled out because of the specific way it was diagnosed. If I recall correctly, it was something about the tender points being in specified places and mirrored on both sides of the body, which didn't fit with my symptoms. My own research led me to myofascial pain, and I found The trigger Point Therapy Workbook (Clair Davies) seemed to make some sense of what I was dealing with. My GP had never heard of myofascial pain and gave me the 'raised eyebrow' look when I tried to explain. He tried to placate me with a referral to a specialist, but when the appointment came through, it was with a 'headache' specialist. This chap was very nice, but totally bemused as to why he was seeing me, and said the best thing he could do was to refer me for physio.
As the reply above there are similarities between the two but as explained to me by the consultant rhumatologist who I saw for a second opinion there are also significant differences like cognitive behaviour. My pain is also intermittent and I understand that with fibromyalgia the pain is more constant.
I was initially diagnosed with fibromyalgia by a registar at the hospital and advised to be put on gaberpentin which is addictive. I was not confident with this diagnosis so I sought a second opinion by a more senior consultant who disagreed with the initial diagnosis and instead confirmed a diagnosis of myofascial pain. I am now prescribed with NSAIDs instead and whilst my pain readily responds to these (again I understand that would not be the case with fibromyalgia), I cannot tolerate NSAIDs but that is a different issue.
I also rejected gabapentin, being very wary of anything that can become addictive. Forgot to mention, I long ago discovered that histamine is a big, big factor in my EM symptoms. If you haven't already done so, research histamine intolerance and then look at your diet in detail. You may find, as I did, that EM is significantly worse when you consume certain foods.
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