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unsure of diagnosis

Sep 03, 2014 12:14 PM

I was diagnosed with fibromyalgia a year ago but I have been struggling with pain since 2005.
It started with a shoulder injury and quickly got out of control. Constant muscle cramps and spasms, inability to sleep, fatigue, severe headaches, sensitivity to smells, sensitivity to weather changes, cold limbs, numb hands and feet. I don't have the tender points though unless it is a very, very bad day which is usually caused by a cold front.
My mom has fibromyalgia and lupus and because of my lack of tender points I don't think I have fibromyalgia. All the blood tests the doctors have ran come back negative, except for inflammation in my system. I usually ask the doctor to press harder on the test points in hopes that the muscles will release.
I found that food sensitivities are a major source of my pain, the IgG antibodies in my system from food are a major source of inflammation. The problem is that the foods l react to seem to change on a regular basis. My first intolerance test cane back with 4 foods I should stay away from, the latest one came back with 30.
I've seen a neurologist, rheumatologist, pain specialist, 3 general practitioners, and a naturopath.
I try to exercise daily (usually an hour a day), I go to massage 1-2 times a month (90 min sessions), I go to physio every 2 weeks.
I make all my food from scratch since pre-packaged will only make everything worse. I do work rotating shift work. I don't smoke, don't drink or do anything considered 'bad'. I only take Advil and robax platinum when I absolutely need it.
I don't think it's fibromyalgia because of the general lack of tender points unless in the middle of a flare up.

Sep 03, 2014 5:47 PM

sounds similar to mine. I have CFS/ME and had prolapsed discs in neck. Now left with nerve damage after the repair. they don't recon the nerves will recover as they should have started to by now. they put it down to time taken to get operation. I have sensitive to bright light etc arms constant shaking. it's all down to fatigue in the muscles.

Sep 04, 2014 1:19 AM

You only mentioned Advil and what I think is robaxin. Are those the only 2 meds you've tried for treatment? if so, that could be a LARGE part of the problem. Have you worked on doseage, too? Unfotunately, there is no across the board med schedule for fibro treatment. It took me almost 18mos to find what balance of drugs to manage my fibro pain while also managing my Chiari 1 headaches, depression, and to help with my chronic joint pain. If your rheuma isn't willing to work with you intensively to find a method of treatment, which, of course, means appts more frequently (like 1x/mo or more, instead of every several months, like when you've found that cocktail and can be on quarterly or so maintenance appts), then you should find another physician who WILL help you. After 2.5 years of, on the best of occasions, mediocre treatment from my previous pain management group, I finally realized I HAD to find a better doc. I HAD to advocate for my problems, for myself. It has made an -enormous- difference to actually have a physician that listens to me and doesn't treat me like I'm just a drug seeker.
Whatever you do, I hope you find relief...and SOON!

Sep 04, 2014 8:30 AM

I have the muscle relaxant cyclobenzaprine but the doctors don't want to give me any thing else until I am no longer working. I can only take the cyclobenzaprine on days when I am not working because of the drug policy at work. I'm also on the waiting list at 2 clinics but no one is taking new patients at the moment.

Sep 04, 2014 8:47 AM

There are a lot of pain medications out there and new ones coming out all the time. There are ones that work that will allow you to continue to work and not impair your judgement or coordination. Some may take a little bit for your body to get used to and you may want to take some time off while your body adjusts to the medication.
I personally would not let some policies get in the way of you getting the help you need and by the looks of your pain diagram you need help my friend. Talk to your doctor and do some more research into whats out there that can help you.
I take Oxyneo, Lyrica, Percocet, Cyclobensaprine and some kind of anti inflammatory. These meds can impair me especially when I have to take them all at one time but I did work for years using Oxycontin (now Oxyneo) and Perocet. I had no problems functioning at work while on these meds.

Sep 04, 2014 10:12 AM

Are these medications something you need to take all the time? Fall has arrived and the weather is very unstable which is why I feel like I was hit by a semi. Usually I am highly uncomfortable with some painful spots and very tired.

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