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Treatments
A MyFibroTeam Member asked a question 💭

I got diagnosed today and I'm starting on Lyrica tonight. I also tried elavil and cymbalta which didn't work for me. My doc didn't explain much to me about fibro or treatments. So I wanted to know what treatments work best for you guys? I heard exercise is often a key to manageing fibro better. I heard about some diets. Is there anything else that works for you?

posted August 19, 2016
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A MyFibroTeam Member

The only thing that gives me some relief is oxycodone which my doctor tells me shouldn't work on Fibro but it helps me. I agree moving around helps, it loosens me up in the morning but by mid afternoon my body is done! I have tried so many things it makes me sick but do what works for you because it is a terrible disease which only gets worse and worse. Never in a million years would I have thought I'd be so useless at 54 years of age and it is very depressing! Everyone is different and I believe there are different stages of Fibro because some people can still work and there is no possible way I could work! I don't mean to sound so negative but you will gradually get soooo many more signs of Fibro that you wouldn't even suspect are related to Fibro and this site is a wonderful place for information. You will start hurting in so many more places like your feet, your hips, knees, thighs and calves, you could get a burning tongue, cankers in your mouth or cold sores!!! Like I said, it is a terrible sickness and I wish you good luck!!!

posted August 20, 2016
A MyFibroTeam Member

Fibromate, I am so sorry. And I want to believe we are all different too! There are many people out there who survive daily with a full life. Best thing to do is stay connected to the literature, share with other patients and keep trying combinations of treatments, lifestyle changes, etc....it is possible to live alongside the pain part of the time, frankly the flu like symptoms and migraines are sometimes harder, but for me they arent present every day. But when I am with people I love, reading a good book or watching a good movie, etc I will realize time has passed without my dwelling on the pain.....take care.

posted September 2, 2016
A MyFibroTeam Member

I'm glad you saw a doctor before school. At far as excerise you will get plenty with walking to all your classes. It not about excerise but about strengthening and relaxation. I'm not diabetic so I have a well rounded diet -Canadas Food Guide. Good luck.

posted August 19, 2016 (edited)
A MyFibroTeam Member

"We are all different"..hmmmmm
and we are similar enough that we have many of the same cluster of symptoms... treating those symptoms is impossibly hard and it makes me feel because the symptoms are not going away with any predictability, that no one knows what they are doing. Fibro is not easily researched ($$$) and a lot of the literature is anecdotal. But some excellent practitioners are making their way to us and giving us the respect we deserve.
Meanwhile, OUCH!!!

posted September 4, 2016
A MyFibroTeam Member

Progression of fibro is an interesting topic...everyone wants to feel better and have good days....no one talks about it going away, or rarely...I say to myself frequently (for reassurrance) that at least it is not life threatening! I am definitely more symptomatic than I was six years ago, when I had my first heart attack. It is hard to tell if my deterioration is due to combo of issues, reversable or just part of the aging package...

I am working with an integrative doctor who has Fibro herself. There are thousands of patients who follow her protocol (founder Dr St Amand at UCLA) and these patients experience cycles of improvement. She also leads a full life once again after a 2 year medical leave. She has me on a Hypoglycemic diet as part of the protocol. I have mentioned this before, and as I am only 5 months in to it, I am not sure how it will work for me. It is a lifetime treatment, but then she is not saying this is a cure but a reversal that cycles. I have been told to give it two years by other patients.

I find science imperfect, maybe because scientists are imperfect. Luckily human biology shares enough commonality that we can help each other learn ways to feel better. I have begun to step away from Western Medicine except for maintenance or emergencies, and look to spiritual landscapes, integrative medicine, food as medicine, reading, sharing stories, and volunteer service to neighbors and animals.

I met a man recently. He was a master craftsman and high level COO. He was in an accident and was left debilitated by crippling pain. He sold all his belongings and moved to a monastery in Nepal for two years and lived as a monk. He told me while he was there he was the healthiest and happiest he has ever been.
AND his illness never went away!! That gave me pause....and hope.

My biggest challenge is not to let my illness define me. Take care every Body!

posted September 4, 2016

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