Fibromyalgia Community
HELP!!!!!
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HELP!!!!!

Eight years ago in the spring, about a month after my husband was diagnosed with Bells Palsy, I started having a burning pain in my left wrist that by the end of the week extended to my inner aspect of my left arm, armpit and across to my left breast. It in sensitive and very painful. I was started on gabapentin and vicodin. My blood work had a + ANA and I had the complete workup for Lupus and was seeing a neurologist for a few years that just prescribed loads of percocet for me. I tried every drug there is, Lyrica helped the most but had a nasty reaction. I finally found a great pain specialist, after several frogs, and was diagnosised with RSD or CRPPS (despite no trauma) I had a spinal cord stimulator placed and was doing ok until my legs started hurting. Always from the knees down and depending on the weather, stress or my menstrual cycle, I can have pain in the entire leg especially lateral thigh, hips. They burn, like I am on fire, not as sensitive to touch, but cold air makes it much worse.  Now the theory is fibomyalgia or chronic pain.  I can not have an MRI because of the stimulator, but again no trauma.
Is it possible that it was the virus that started all this?  I've tried it all and it. Has totally changed my life. While I do have good times, for the most part I am riddled with pain and sadly miserable, tired and not as involved with my life as I would like.  I was wondering if tins is even heard of? And maybe a visit with an infectious disease specialist would be logical. Considering I have tried everything else fro, ketamine and lidocaine infusions, ganglion blocks, crazy diets and vitamins.. What do you think? Am I the only one?
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Avatar_m_tn
Get a Lymes test through IGENEX labs.  99% of Fibro is infectious Mycoplasma related (Mycoplasma Fermentans-Incognitus strain, Mycoplasma Penetrans) or Lyme bacteria and coinfections Borrelia Burgdorferi (Lyme bacteria).   The Labcorp tests miss 90% of positive cultures and since this is a bacteria, Lyme researchers are finding out Lymes can be passed sexually as it is found in every human body fluid once infected.  The Bells Palsy might or might not have been Viral, it could have been bacterial.
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were you dx with Lupus? I have the burning pain down my arms and legs and feet. Cold air makes it worse. I have Lupus and am on lyrica and vicodin. It gets very frustrating when I get into flares because the pain is worse and the meds just don't work. It's like nothing works the pain is so bad. I know this isn't a helpful post, but just to let you know you're not crazy. The pain is very real and very bad. My whole life has been changed by this, but I have found that I can keep a positive attitude. I make real bad days movie days. If the pain is not quite as bad I'll do puzzles to keep my brain exercised. Then on the days I'm feeling better I like to spend with my grandchildren. Having some hobbies helps like scrapbooking and journaling.
The worst thing you can do is to start feeling sorry for yourself and dwell on the pain. work with your doctors and if they won't work with you find another one. Don't give up.
I hope I encouraged you a little anyway. Sorry for your pain. I wish I could take it away.
Mapa
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Avatar_f_tn
I did have a Lyme titer (negative) how do I go about getting my blood tested through a particular lab?
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Avatar_f_tn
No, I was ruled out for Lupus.. I did feel better on the Lyrica though, but had a really bad reaction!  This week has been really bad, I'm not sure if its the weather but I'm almost crippled.  Yes, it has changed my life too.  My triplets were about 18 months when this started and my husband has been a huge support.  Thanks for your kind word.. Somehow I keep trucking along. Some days better than others.
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Avatar_f_tn
Hello, if you don't mind me asking, what is CRPPS?
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1530171_tn?1362547225
Hey sunnieday34.

  It means Complex Regional Pain Syndrome. (The second P may be a typo or it means something else.) RSD is another name for this condition (Reflex Sympathetic Dystrophy)
Blessings to all,
Nikodicreta

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1530171_tn?1362547225
Hey Jshanhan.
Just go to the IGENEX labs website.  All the information you need is there.
Hope it helps.
Blessings,
Nikodicreta
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Avatar_f_tn
Lyme totally makes sense, you would not believe what I have gone through. I was even admitted into an inpatient psychiatric facility for 3 days because I literally could not stay awake for a fess and everyone thought it was cause I was depressed.  My pain is constant but the I tensity waxes and weans.  My hair has been falling out for about a year, small bits all day.  I'm so tired some days, vie been tested for mono like ten million times, ivenearly lost my job because I've been so sick.

Question, if it is lyme with co infection or virus and I've had it for this long 8 yrs.  What would the treatment be?  And would the symptoms go away?  I'm miserable with the pain and general crappy feeling.
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Avatar_f_tn
Sorry, one more question.  Is there a prime time to have my blood work taken.  I thought I read something near my menses?  Which by the way is when I'm the worst.
Thanks,  I've been treated so badly over theses hers by so many lab md and or nurses,
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Avatar_m_tn
post all your symptoms and timeline on the Lymes message board.  There are females there that could tell you better about your menses and testing time to make sure you get a proper result.   There are so many others suffering from this and are being diagnosed with all sorts of stuff.  You need to get proper testing done.

Like I said, post over at the Lyme page and see if some of the others can guide you too.
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