Posted 4/3/2011 2:15 PM (GMT 0)
I'm 31, mom to two boys and and married 3 1/2 years to a wonderful woman. I was diagnosed with fibro on Friday by a rheumatologist, but even he isn't entirely sure something else isn't going on. Nothing indicating anything autoimmune or infection has showed up on all the testing I've had in the last 6 weeks, though, and I have had symptoms for the last 16 years that could be attributed to fibro. I'm hoping I can run this by people here and see what you think.
If this is fibro I've been in a big flare for six weeks now. Six weeks ago yesterday my left hand went entirely pins and needles, and then my wrists and elbows started hurting with tingling in my fingers. Over the next 10 days I developed pain in my neck and shoulders, then my knees, then lower back, calves, ankles and thighs with tingling in my feet (all at the same time). Somewhere in there I had an episode where my entire body was extremely tender to the touch and that lasted five days. Now I consistently have pain in multiple places in my body with lots of tender spots near or on my joints, plus muscle twitching in my shoulders and lots of tender spots. My left leg and (sometimes) the left side of my genitals will go pins and needles if I sit upright too long in a chair, a car seat, etc. My legs feel weak and I can't walk very fast without feeling off-balance. I'm always tired and feeling worn out and I don't sleep well. I do have a history of unexplained chest pain (proven not cardiac-related after extensive testing), plantar fasciitis, episodes of feeling flu-y with joint/body pain and a very low-grade fever, left wrist pain (possibly due to a large ganglion cyst), bilateral knee pain they can't explain, lower back pain and extreme tenderness, diagnosed with IBS at 14 (that runs on the side of constipation), bouts of unexplained abdominal pain, headaches/migraines and extremely painful periods. I also have SVT (supraventricular tachycardia) and have lots of PACs and PVCs, but I hadn't had to take meds for it for six months before this started. about five days after the pain started the SVT kicked up worse than it's ever been and I had to go back on my meds for it.
In the past 6 weeks I've had: NCV/EMG on both arms (no nerve issues), x-rays on my neck ("early disc degeneration"), shoulders (normal), and lower back (normal) and blood tests galore. All blood tests were normal, including ANA, thyroid, liver, kidney, CRP, CPK, multiple sed rates, Lyme disease and parvovirus, I saw a neuro two weeks ago, who then ordered head and lower back MRIs. I had the MRIs last Tuesday. I haven't gotten the MRI results yet (that appointment is for the 20th) and the rheumy wasn't able to pull up the radiologist's report for them but he said he thought he saw some arthritis in my lower back and nothing else. I'm taking gabapentin 500mg/day and tramadol 50mg plus 1000mg acetaminophen every 4 hours for pain. The tramadol controls the pain only if I don't move or put pressure on my tender spots. I have lots of breakthrough pain just feeding myself, walking around, etc. I've tried a host of other painkillers and they don't do anything. Repetitive motion really causes the pain to flare, which is one reason I've been on FMLA for 5 weeks from work. I work in a call center, so I sit and type at a computer for my entire shift. The wrist pain after only a half hour of typing was unbelieveable, and my neck and shoulders would cramp up and give me massive headaches. The only good break I've had in the pain is when I had my period this month. My body felt pretty good but I had the worst burning cramps from just above my navel down into my hips (pain scale 10, easily) and back pain, with pain and cramping in my thighs and pain in my buttocks, shins and calves. I could literally feel my thigh muscles tensing into the cramp. I had little body pain from two days before my period until two days before it ended. Last month's was unusually painful but not quite this bad.
So....fibro or not? The rheumy referred me back to my family doc to handle this and I see him again tomorrow. My family doc is wonderful. The rheumy was impressed at the referrals and testing that my GP had ordered, saying he did a good job testing for the right things. My main concern right now is getting back to work. Between my legs/lower back and my wrists/arms I can't do my current job until I have good pain control. I'm not asking for the pain to be entirely gone but I can't work when it feels like I have hot pokers being shoved into my wrists/hands and body parts are numb. I've bought a mouse pad with a wrist rest, all ready have an ergonomic keyboard and plan on buying an ergonomic mouse and keyboard wrist rest. Problem is, I have tender spots in both wrists and pushing on them causes lots of pain and numbness in my hands. If I'm going to use the rests they'll actually have to be under my forearms and I don't know how that will go.
I'm still holding out hope that I'll wake up one morning and the pain will be gone, or low enough to be able to function properly. Doesn't fibro pain usually come and go? I'm really frustrated about all of this and sick of all of the pain. I'm extremely sensitive to any sedative side effects from medications, though I usually do adjust enough to be able to function after a time. I don't want to use narcotics but the lortab and darvocet I've tried didn't do anything anyway. I think the goal right now is to increase the gabapentin slowly to see if it helps. I was taking 100mg 3x/day and the rheumy told me to increase to 100mg 2x/day and 200 mg at bedtime, then to 300mg at bedtime if it doesn't make me too tired the next day.
*sigh* I know I wrote a novel and bravo to anyone who read the whole thing. I'm hoping someone has some input or advice or something. My family doc has been stumped so far and hasn't known what else to try for pain, so unless he wants to try something new tomorrow I'm going to have to just go back to work on Tuesday and see what happens. If I have to quit, I guess I have to quit and try to find something else I can do. I just can't believe there isn't something else that can be done for the pain.