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Old 06-22-2012, 03:56 PM   #1
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Recently diagnosed...

After lots of testing and seeing a variety of different doctors, I was diagnosed with fibro at the age of 27. While fibro is new to my body, it is not new to me. I grew up watching my mom suffer from it and eventually getting social sercurity disability. That thought scares me, I don't want to end up like that. I try not to think about it and just live my life as normal as possible. However, that is next to impossible. On top of having Fibro, I've been dealing with Complex Regional Pain Syndrome in my entire right limb for the past year.

These two disorders are alike in so many ways which makes it easier to treat with the same meds however activity level and physical therapy aren't the same. I'm suppose to be as active as possible which is the best thing for CRPS however thats hard when your whole body aches and is yelling at you to go to bed and rest. I've been in physical therapy now since April '11 - yes a very long time! Maybe I should explain a little first. I had flat foot reconstructive surgery on my right leg in Feb. '11 and started physical therapy in April '11. At first things were progressing well but as months went on I started regressing. By December '11, I had severe pain, swelling, muscle tightness, weakness, and temors throughout my whole right leg. That is when I was diagnosed with CRPS Type 1. I continued through PT, taking one day at a time. In Feb. '12 I started having similar symptoms throughout my whole body. Pain, weakness, tiredness, tremors, cramps... After multiple tests and doctor visits I was diagnosed with Fibromyalgia. I'm hoping that things will start turning the corner for me. This has definetly been one long journey for me. For meds I'm taking Neurontin 600mg 3x a day, Flexeril 10mg 3x a day, Elavil 50mg 1x a day, Voltaren 50mg 2x a day, Ultram 50mg 4x a day, Valium 5mg as needed at bedtime, and Fossamax 70mg 1x a week.

I'm curious to see what meds seem to work out best for you guys as well as seeing if there is anyone else on here with both conditions. Anyone have any good advice for me? The reality of this hasn't set yet. I'm still coming to terms with the CRPS diagnosis.

 
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Old 06-22-2012, 11:07 PM   #2
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Re: Recently diagnosed...

Yikes, that put you through a wringer. I guess maybe it's worse in one way that your Mom has this, since it xould make you do that "catastrophizing" i've been reading about.... Believe me, I'm in no way implying this hasn't been REAL and awful for you. That is clear, that you've been on a tough road. I just want you to go into the future with a mind empty of expectations. The rest of us probably spent at least 10 years expecting to find that one thing to make us a little better.

I'm glad you're in P.T.. And if it doesn't seem effective, remember that therapists are like doctors. Some specialize in one thing over another. Even over ten years into this, I came across a new P.T. Guy who had more/better techniques and exercises, that still help me 7 years later.

We are all really lucky to be in an age when doctors are doing research into exactly what phsyiology is behind this. There are enough of us to make it worthwhile to drug companies to do R & D. I am hopeful when I think about that. Don't get me wrong, I can get very depressed, and it's tough to shake it, because that's my genetics.

If you like the voltaren gel, I'ld like to suggest the Flector patch. With the caution that it depends on your insurance, what it may cost. It is the same medicine, but time released for 12 hours, so it is an incredible difference. Just doesn,t stick to places that have odd curves, or stay put in the bottom of a shoe.

 
Old 06-22-2012, 11:20 PM   #3
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Re: Recently diagnosed...

hi, I wanted to say to please don't let it scare you. It sounds like you're not giving in to the CRPS so please don't give in to the fibro. Just keep moving but don't overdo. Water exercise is the best for fibro as long as the water is warm enough (83 degrees or so or more for me). just do everything in moderation so you don't get the flare ups. cj

 
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