Quote:
Originally Posted by Coffeebean
Hi Denise,
I too have been diagnosed with both RSD and fibro. I thought my RSD came first (after two failed ulnar nerve surgeries) but then a neurosurgeon friend of mine sat me down and said that I had fibromyalgia and that is probably what caused pain in my arm leading to the surgeries. I don't know, I thought I had the RSD first, but maybe this doctor is correct.
I fought both diagnosis for a long time. I was too afraid of RSD to accept I had it and that may have been a mixed blessing. I am now traveling to see a specialist at the Cleveland Clinic and he has been surprised at my recovery. He thinks it may be related to the lack of medication that I have taken. I was so much in denial about RSD and in so much pain from my surgery, that I could not force myself to get the SGBs or take the medications prescribed. Every time I try, I seem to get so sick from side effects.
I do struggle with RSD because I will tend to get a break from it but then it flares up again. I get so discouraged because I feel so isolated from the world. Like life is going on but I have to sit at home and miss it. I miss going to work, seeing coworkers, feeling vital, having some financial independence, etc. Yes, RSD (and fibro and all these nasty pain syndromes) sure can rob a person of some good years.
Okay, sorry to get down. I have been struggling for the first time in my life with a little bit of depression so I am working through it. Responding to a post is a step for me. I have read these forums for over a year, but I don't write as much because of pain or anxiety. You know, it is like - if I respond then I must be admitting I have the disease. Yes, I think I am still struggling with it all.
Anyway, I hope you are doing well. Also, I wanted to know what you did to get your RSD to go into remission for a while?
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Hello and thanks for post I am so sorry you also have also been dxed with both.
At first I wore a catapress patch/Clonidine directly over the useless foot. This is how my Dr. Dxed me with RSD because in several days I could move it and start to put weight on it.
However it still hurt like **** so I wore the catapress patches its a heart med but works on RSD by slowing the nerve impulses .
I took Neurontin for the burning shooting twitching pain and tried most ever pain killer my Dr could think of most hurt my stomach real bad. I now have an ulcer most liiey fro the meds
I was on ibupropen 800 muscle relaxers & antidepresents After developing a rash where I put the patch my Dr put me on Clonidine the pill form it really helped.However.........................
I finally decided that I had had enough pharacuticals after trying a new SSRI that caused me to pass out on the bathroom floor and wake up almost unable to move except for my heart which was racing at 145-165!!!!!!!!!!!
After all this and 3 nerve blocks which did not help but did make it turn into full body RSD (my opinion)I decided I needed a new plan so I slowly went off all meds for 3 years.During this time my discomfort was minimal.
When problems came back it started with my stomach so I started to keep a list of what makes me feel bad.
It was the discovery that I was NOW allergic or sensitive to soy, wheat and dairy that turned things around for me.I also gave up cafein for 3 years.All forms of it except green tea boy was it hard to give up chocolate
I really thought the rsd was gone until I went on a cross country vacation for a month when I got home the pain was back but it was different instead of burning now I get a lot of all over muscle cramps and back, shoulder and neck spasms that last for a days.
Just when I was learning to deal with it again a stressful thing happened with my daughter and grandson.My Dr thinks maybe the stress and lack of sleep gave me fibro on top of the RSD but that's my GPs opinion. I did not think stress could bring back RSD I thought only a new injury could. I am learning stress can be as bad as an injury, for someone with RSD , as it leads to a lack of sleep and for someone with RSD that just spells more pain soooooo now I am back to taking Atenolo ,Soma ,Tramadol, Trazadone daily. &Valuim & Davocet when needed.
I hate meds and being dependent on them but several new books I am reading about Fibro say you need meds untill the flares are under control.
My RSD books say the same thing
What do you think ?Personaly I think it's the processed food.So I have gone organic.Trader Joes is my favorite store.
Take care and feel better soon.
Denise
Sorry the post is so long I am from Texas and come by it naturally LOL