Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 09-21-2013, 02:04 AM #3
Sylmeister Sylmeister is offline
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Join Date: Aug 2013
Location: Albuquerque
Posts: 60
10 yr Member
Sylmeister Sylmeister is offline
Junior Member
 
Join Date: Aug 2013
Location: Albuquerque
Posts: 60
10 yr Member
Default Hi Renee

It sounds like you are on the same flight I am on. I slipped in water, rather than ice, but had done the ice trick as well. Used to live in Michigan. Anyway, I tore up my shoulder from the fall, required surgery can came out of anesthesia with RSD. It started in my right shoulder, arm, hand and upper right torso. In some resects, I was vey lucky, I was diagnosed at 4 weeks, by my PT. She was awesome and immediately started working on my arm, which was already "frozen" in just four weeks. Barely after two years in, I work up with a very different pain, in addition to the pains I had had for two years. I was old that RSD "opens the door" for other diseases and that I had fibromyalgia. RSD is the beast and Fibro, it's ugly sister.

Allenira has already given you a lot of good advice. For me, I was already on everything medication wise that was even considered to be useful for Fibromyalgia. I had pain meds, anti inflammatory, anti depressant, anticonvulsant, needed something for acid reflux at this point and because apparently I was controlling high BP, high Cholesterol and Diabetes with diet and exercise, until I became an RSD Zombie. (my pain was so bad I could not even hold a conversation for several years). I had a bucket full of chemicals, when before that I only had to deal with hypothyroid disease and I didn't even like taking that once a day little pill. It is vey distressing to feel like you have a pretty good life, enjoy your job, and for me, I had a great but relatively new marriage. This happens and it pretty much gets pulled out from under you.

I can tell you I fought back really hard. I tried really hard or a long time (once I was able) to get myself out of the house, even if it was for a coffee. I tried to fix us dinner if I was able to convince myself i was up for it. I pushed myself or tried to and only wound up in much worse shape, I was a sea hag to my husband and yelled at my dog, & my pain was worse. When I prioritized, making, I thought, my husband 1st, then me, what I found was that in order to be there for him, I had to be there or me first. I still got up and got dressed and have still never allowed myself to stay in bed, but once I got that far I did not push myself. If I truly felt up to emptying the dishwasher, then I did that, but didn't push myself to do anything else. When I did too much, then, my function the next day was lower and my pain, higher. I started then and still at 10 years in, never set my alarm, unless I have a medical appointment that I could not get scheduled in the afternoon. I wake up when my body tells me to get up. I stopped stressing about cleaning and doing things that I thought other people expected of me. In a way, I let the Monster be in charge, but by doing so, I am able to have a relationship with my husband. Not the one we had before, but an augmented one that still works... With the RSD and the Fibro. I learned how to negotiate with my pain and work around it. If there is something we want to do, I schedule doing NOTHING, a day or two before, so that I don't jeopardize our going out to dinner or what ever we have planned. And yes, socializing still has to be scheduled and negotiated with the RSD.

Just like Allenira said, do what you can to minimize the stress in your day, every day. You can live with this and once you begin to understand the diseases independently of each other, Understand how each restricts you and how you can work around it, Life actually becomes more manageable and I believe the pain becomes more manageable. My RSD had already begun to spread when the Fibro showed up that morning. I felt it getting out of bed and I didn't know what it was but it ticked me off. because honestly, didn't I have enough already. My RSD has spread to my entire body and I may look a bit like a sea hag most days... Ok, look a lot like a sea hag, a lot of days, but I don't act like one anymore.

One big suggestion as far as the Fibro goes, I saw a fibro specialist in Tucson, right after I was diagnosed by my rheumatologist. actually my 4th PT (we all have lots of helpers I am sure) referred me to him. One of the tests he had me take right away was called ELISA ACT. Each letter stands or something but its pronounced like ELIZA Act. Blood is drawn and sent to a special lab, where it is tested against up to 600 food, chemical, environmental agents, across 3 days. It is tested for inflammation. Everyone is affected by different things and it is in no way associated with items you may be allergic to. It is an Inflammation test. Back then, the only fat that was allowed in my kitchen for over15+ years was Olive Oil. Guess what was one of the top 3 food items that was causing inflammation in my body? Olives including Olive Oil, Blueberries and Peas including snow and sugar snaps were my food triggers. I promise you, I immediately cut them out of my life and I was able to get out of bed. I do have Fibro Flares, usually the weather, doing too much, and excess stress cause those flares, but most of the time... I know they are coming. i travel either a long car ride or air flight, and I know can count on a Fibro Flare. So, I prepare for that. I negotiate it and David and I know, the day after a travel day is a chill out day. For me, barometric pressure, doing too much, and excess stress make for a horrible tomorrow, but day to day Fibromyalgia does not kick my butt! That one test has made a HUGE difference in my life.

I can check my files tomorrow and give you more information on the lab that does this. Back in 2005 they were the only place to get it done. Not sure about it now. But I am sure you could look it up on line. Also back in 2005, if your insurance wouldn't cover the test, they still did it and charged the patient only $50. Which is amazing. I do not know if they still do anything like that or not. The lab is in the East, somewhere like Asheville or in VA. Can't remember exactly, but that isn't important.

Take it easy, soft hugs and when I get up and going tomorrow, I will go through my files and find that for you. I also read a self help book back then, I'll try to find the title. I'm not a touchy feelie person and I kind f hate that whole genera of publishing, but this author had some very good suggestions, the ELISA ACT test was one of them. I just got lucky and found a doctor who was clued in, because I probably would not have asked about it myself. I was way too defeated back then to ask. So taking charge is important too.
Soft hugs, Sylvia
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