Hi, over the past 8 months i have had severe joint problems, which i put down to hard graft at work.I persevered to see if i could adapt but over the last few months it got worse and worse. I ended up taking strong pain killers after my shift at work but no pain relief.
I subsequently started researching my aches and pains of late and came across a condition
called "Fibromyalgia" PLEASE GOOGLE this as its to complex for me to explain.
Anyhow from birth i was born with a hole in my back which is a very mild form of spina bifida, ive always worked,played enjoyed life to the full and had no probs. I do occasionally have dizzy spells which i put down to having a blood clot on my brain 10 years ago and received medication for. I have always suffered with short term memory loss. but have always held down strenuous jobs.
But of late im struggling with my aching joints and came across Fibromyalgia.
Please help on advice and how to put this into context for my Dr..
Many thanks
Mark
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mjp1973
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Hi Mark, hopefully one of the others will get back to you that are more up to scratch with Fibro' as I was tested for it but have been told my joint pains are not down to that.
They say mine is due to APS & I now take Plaquinil for it & I find that helps at least 70% with the pains most of the time.....
It could well be fibro....have you been diagnosed with APS / Hughes at all too? as you havnt put that in your post?
Hope you are ok & I hope you get some answers soon & I'll look back on here asap & see how you are doing with any more answers, good luck.
I have been diagnosed with Fibro Myalgia but i agree with Aps on this one to get yourself refered to a GOOD rheumatologist.
I am also concerned you had a clot on your brain........i'm not convinced with this label of FM I feel it's an easy way out of not looking any further into what is really going. Jillymo X
Hi i have the same problems, was also born with a hole at the base of my spine and was diagnosed with Spina Bifida Oculta as a baby, i have terrible aches and pains in joints and all over my body also.
I have 2 friends diagnosed with Fibromyalgia and i believe i have it too. You need to be referred to a specialist and they will conduct a test. Its actually a pressure point test and if you have pain to the touch in i think its 18 places then you will be diagnosed with it. There is no cure for Fibromyalgia.
My doctor wont refer me nor will he do anything or give me anything for the pain (not that it would work anyway)
My advice is explain your symptoms to your doctor and ask to be referred to a fibro specialist. If they are good dr's they should do it unlike mine.
x
Mark I have fibromyalgia. Selby I was also born with spina bifida occulta, a pinhole in my spine at L5-S1. Lately causing huge issues with urinary tract.
Mark how are your vitamin d levels? Mine were insanely low and since I've been on a supplement my symptoms have improved greatly. I've refused meds for fibro as so many side effects. They say regular exercise and Tai Chi help immensely. Studies have shown this.
Regardless what is causing your symptoms I do hope you find relief soon.
'....“Instead of being in the brain, the pathology consists of excessive sensory nerve fibers around specialized blood vessel structures located in the palms of the hands,” said Frank Rice, PhD, ...'
'...researchers found an “enormous increase” in sensory nerve fibers in the blood vessels of the skin on the patients’ palms. The extra nerve fibers appear to disrupt the normal flow of blood,....'
Hello , I also have fibromyalgia... It's awful. Every time I get a blood clot it flares up . I've had 20 clots from the age of 19 and I'm now 34. I have been on heavy pain meds and got dependant on them so many times . I'm off all pain meds now . I just live one day at a time . Also with fibromyalgia there are trigger points on your body that your doctor can touch and you will feel like a hundred pounds of pressure. Good luck buddy
Dear Apsnotfab: I was searching local hospitals to find an APS specific specialist in my area. I did pick up a negative "attitude" about the disease in general. No one, however, would explain how, why or for how long this disease received such a "bad name". What is your opinion on "the bad name" and what do you suggest to do or say to change it?
Thank you for your most thorough explanation and opinion. I'll take your advice. Incidentally, they decided to resume with a trial of Plaquenil and I remembered that you said Prof. Hughes once stated that the brand name Plaquenil works better in most patients than the generic. My Walgreens (common drug store) came back with a price of $497.00/90 pills after applying insurance. Medicare will not cover it. That is certainly not in my budget. With my Fentanyl patch costing over $500/month and 7 other meds - it's just out of the question. However, my rheumatologist said my numbers are creeping higher and higher and we will do one more test in 3 months and if they don't go down she wants to start coagulation injections rather than aspirin. I would get a second opinion before I start something that dramatic and intrusive.
Again, thank you for your most thorough answer and opinion.
I was diagnosed with fibromyalgia which ended to be a very damaging diagnosis when my long term APS flared following flu... the term is sadly a catch all phrase but anyone with an autoimmune condition need other conditions excluding as absnotfab has already mentioned - there seems a debate amongst specialist as to whether fibro is an auto immune condition or a condition they tend to use if pain is the main symptom and linked to depression sadly this may mean they stop looking for another cause - often you then get treated as depressed / anxious which happened to me, but i knew i was not and the more i argued my corner the more they didnt help - i was given a high dose of amitrytylline because of its "antidepressant properties" that was so toxic it made me much worse (they then could say my excessive dry mouth was due to that) so no win situation and the fact my inr was only 1.4 and i was clearly anxious about my life threatening condition my gp's response was i have been seen at a specialist unit diagnosed by experts! i was in the process with switching GP's when i had several occular tias, left sided weakness when i recovered but was still fatigued with aches pains and still foggy brain i paid privately to be seen at St Thomas to find my ACL antibodies were over 400 i had bone dry eyes ANA antibodies and for over a year i had to fight to get proper care and recognition ... fibro i believe does involve thyroid and the adrenal gland mal function but until it is clear i am not happy to have that label but that is just from my personal experience.
2 years on i lost weight exercised it was a slow struggle and finally put on plaquenil - i have a new target inr 3.5-4.5 and test my own inrs but none of this would have happened if i didnt seek another opinion!!
the rheumy that dx fibro said plaquenil would not help me when i suggested trialing it - but i was started on it at St T's it has made a massive difference and now my imflammatory markers have been raised on numerous occasions they now say i have lupus like symptoms sicca manifestations (one antibody didnt come back positive so didnt get dx with sjogrens but i have all the symptoms!)
All i can say Mark is fibro is a convenient label with no cure where as more clinicians are accepting APS in deed does cause fatigue and joint pains - i had tender points and low grade fever i would not mention fibro let them diagnose you - obviously fibro does exist and many people live with it and manage the condition my friends who has Rheumatoid arthritis has fibro and goes to a support group.
Hope that helps and good luck i hope you feel better soon
Thank you I thought I had a good Dr until she told me to accept I am never getting better so get used to it she was awful like she couldnt be bothered xx
Hi, I have only Hughes Syndrome but I wonder if you have read what APsnotFab wrote above 4 years ago about Fibromyalgia? It looks to be very good information indeed!
Do you have been to a Rheumatologist who knows Autoimmun illnesses very well? Try that! These illnesses are very tricky and the antibodies go up and down with time.
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