Thread: Fibromyaglia
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Old 07-09-2002, 07:42 PM
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kimmer36 kimmer36 is offline
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Join Date: Jan 2002
Location: Saskatchewan
Posts: 13

Wow, so nice to know I am not alone. I was officially diagnosed about 9 years ago. Two very nasty pregnancies and during my second I was isolated with a "mystery fever" three weeks before I delivered. I suffered major fatigue following the birth of my second son, but being a busy new mom and working full-time as a social worker I did not look after myself. The fever which never seemed to go away took a nasty turn for the worse and I ended up in hospital with a headache and lower back pain like no other (and I have always been a "headache specialist"). Physicians had dismissed me as "a headache", but what they could not explain were the other nasty symptoms like the joint pain, hair loss, bleeding gums, and a doubly enlarged spleen. My blood tests would always come back normal (maybe a little low in vit. B12) until they did a virus scan which showed cytomeglovirus which is a form of mononucleosis. I ended up quitting my job, being couchbound for about a year and a half before I could even consider being employable. I changed careers (computer operator) and have only been able to work part-time. I manage my energy like money. I have so much to spend, so how will I spend it? I have tried all kinds of exercise with the best one being Karate which helped with stretching and concentration. Now I do Yoga for Wimps. However, the post-exercise fatigue takes days for me to recover. Now comes the weight gain. My favorite vitamins are B6, B12, Folic Acid, GNC's Women's Mega Vitamin. I've also had success with the herb Gotu Kola and take Bee Pollen and Royal Jelly when I can afford. The internist who diagnosed me has me taking Elavil (amytriptelne) in a low dose of 30 mgs (helps with the insomnia and poor sleeps) to keep the neck and back muscles from tightening and causing headaches. It has also helped virtualy take away the facial pain as my TMJ joint checks out great and my bite is perfect. The side effects to quite a while to get over, but I'm glad I preservered. I take Zomig for my 5 alarm migraines, and can usually stave off a biggie by taking Advil Liquid Gels (I try not to think of what my stomach is going through). I tried arthritis meds, but could not tolerate them. I also take Flonase for my allergies and to stave off the sinus pain headaches. Seeing a physiotherapist has helped me tremendously in teaching how to give myself a back and neck massage with tennis balls as well as learning exactly which type of headache or pain I am having and making sure I take the right med. For years I was just one big confused ball of agony. I would be chowing down 222's with codene and Sinutabs daily before I sorted out my headaches. I have also learned about referred pain and where to massage. I do try to take the least amount of meds. possible and treat pain points with cold packs, or warm pack, whatever will work. I have shied away from chiropractors as my neck just seems too "brittle". I also had a deep muscle massage that sent me reeling in pain for days thinking I had been put through a meatgrinder and it triggered a 5 day migraine.
I am also sensitive to climate changes. Not much I can do about that except take a little Advil. Where I live it can be possible to experience all four seasons in a day lol!

MOST IMPORTANT! Through counselling I have learned to give up living up to the lofty standards I had set for myself, and what got me over the hump of depression over my "lost former self", was to be good to myself and not beat myself up over brain fog, being unable to commit to or join in everything, just being unavailable at times. Keep a good sense of humor, set up supports and don't exhaust them. Work a little, rest a little. It's hard, but try not to get discouraged you will find what works for you through this journey. Pray for a cure. GOD BLESS!