| I’ve been having severe all-over pain since September 2007. During my lifetime I’ve actually had two bouts of “mono” and years of being sick with “viruses”, sensitive to noises, smells, chemicals and sensations. It just seems like in the past two years, everything has been magnified 1,000 times. I am blogging this because when I go back and look at the start of this, it helps to see what I was experiencing back then compared to now. I couldn’t type (right now it is really hurting to do so) and had to try voice activated software. Just having my knuckles graze the steering wheel made me cry out in pain and having a sheet move across my inner arm was like rubbing your skin when it is sunburned. When I first went to the doctors they tried everything from Vicodin to Morphine, steroids, a variety of anti-convulsants and, except for making me sleepy, fat, irritable, etc., nothing really helped. They did bone scans and MRIs and bloodwork and ruled out Lupus, Rheumatoid Arthritis (my feet and arms felt super-swollen all the time but were not), Cancer, and a variety of other nasty illnesses.
Then they sent me to Neurology. The head of Neurology at a large local hospital suggested that the tingling, numbness and burning in my lower arms and lower legs was due to peripheral neuropathy caused by five years of low B12 (pernicious anemia). He moved me up to weekly B12 injections (from monthly) and sent me for a nerve biopsy and tried various anti-seizure meds. At the time he mentioned Fibromyalgia and I blew him off. He sent me to another specialist in the area of gastric bypass-related neuropathy. I recently returned to the head of neurology and he again mentioned Fibromyalgia as a reason for why, even though my tingling and numbness is improved somewhat, the pain continues and, while still most severe in my arms and legs, is really a full-body experience much of the time. I didn’t really think this was a real disease but I’ve talked to a lot of people and done some research and am starting to believe my doctor.
The past two weekends have been excruciating. The last time my body hurt like this was, well, this time last year. I did a little bit better during the week while I was keeping busy but as soon as Friday hit, my body just hit a wall and started hurting. I went out Wednesday night with friends. I was feeling lousy all day and just sat there trying to keep my arms still and not let them rub against my sides or legs. Last night Pumpkinhead and I went out for dinner with Blue Eyes and then went back to his house and I just sat on the couch trying not to move. Didn’t want my legs to touch the couch or my arms to move out of a certain position. Spent the night with my arms resting on a cool satin comforter and my legs out from under the covers. Barely slept. Today I am just dragging. I had to do things with my mother but I went and got a massage to see if that would help, took a nap and am now back home in bed and about to sleep. Again, I am blogging this so that I can keep track of my pain cycles down the road and see if there is some damn rhyme or reason to all of this. Bah humbug! 
Symptoms:
Pain (joints, knuckles, wrists, elbows, knees, ankles, toes, hips, shoulders, neck)
Burning (forearms, hands, calves, feet)
Allodynia (sheets, clothing, light touch – especially hands and inner arm)
RLS/Cramps in Legs
TMJ
Fatigue
Dizziness/Vertigo (apparently FMS can cause this and I’ve been suffering with this, especially when driving around curves, for several years)
Anxiety/Sadness
IBS
Interstitial Cystitis
Vulvodynia
Sensitive skin/rashes
Multiple Chemical Sensitivities
We shall see. Oh, and he told me to go back down to 60mg of Cymbalta (versus the 90 I have been on). So I will be on 60mg Cymbalta and 200mg Zonisamide (generic form of Zonegran) for small fiber neuropathy brought on by vitamin deficiencies related to my 2001 Roux-en-Y Gastric Bypass.
That won’t help me get better. I’m going to talk to my primary care physician this morning to see if she can help me find a new neurologist who has encountered this before and who perhaps has some way to reverse or stop the nerve damage rather than just managing the pain. After the iron treatments last summer, my iron levels got up to the low-normal range (from basement levels), but even with daily iron pills, the levels have gone down. When my blood was tested in July, my iron levels were low. In late August, the level was even lower. My B12 is low even with monthly injections. My D is low, my calcium is low, my blood sugar is always low, and apparently my blood protein levels are low (weird!). All of this, especially the low B12 and D, apparently affects nerve function.
