Quote:
Originally Posted by Wilbyfree
Ladies,
I am new to this forum but not to RSD/Causalgia. Reading your story and then your comments, I am ready to cry. They say I have RSD/Causalgia in my lower extremities and Fibromyalgia in the rest of my body. I asked if the RSD could spread, they said no. I have all of the symptoms that you have mentioned, for years I have been silent, and somewhat neglected by the doctors, even though all of the tests came back positive, they did not treat this and I believe it spread. I do not believe I have fibromyalgia, I believe it is all the RSD and the fact that I have permanent peripheal nerve damage in my right leg would confirm a disruption in the CNS. I guess awareness is the key for this disease.
I do have severe tremors throughout my body, there are times I actually wake my husband up out of a dead sleep because I have shook so bad, there have been times where I have woke up and could not move or feel my body. I am ashamed to admit this, I had a severe leg spasm while sleeping, I have a 10 pound shitzu, that I sent flying across the room and into the wall, (about 3 feet) when I got my leg under control she was standing on the floor looking at me elusive, I felt awful. Now, she sleeps on top of my head (problem solved). The memory and trying to focus to concentrate is also very difficult however I do blame that on some of the medication.
I guess we just really have to hope and pray that they recognize this as a systemic issue and not just about the pain. The pain is awful, but it is really just one of many symptoms. Thanks for sharing
God Bless, Jeanie
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Jeanie,
Hello ..nice to her from you..Sorry our thread is making you want to cry.
My first neurosurgeon who was scheduled to put my SCS implant in was a "believer" of who said..RSD does not spread..He waited so long that my RSD had a chance to spread...I switched surgeons and had my implant in in a matter of two weeks..the original Dr. had already blown thru 5 mos. and still no implant. AND I had a herniated disc which he missed due to not reading my "pre" surgurgical workup... so he missed that too..... When he told me his feeling about the "no possible spread", and I was feeling pain and symptoms in other parts of my body.... I immediately called my RSD/PM Dr. .. he was fuming mad and said it does spread..absolutely..!!!!!!!!!!!!!!
Now we can say our symptoms and pain don't lie!! I am sorry to say but it does spread and we are the reality of this illness. Some of these docs haven't the faintest idea of what it is like to walk in our shoes.... they just collect their paychecks and go home crab about us "whiners" of a little pain!! Right???..right! Your story of waking and moving your 10 lb. dog off your bed is a common one as we move thru the stages of RSD... I , too hate the feeling of these movements, although our dog weighs much more, just a little humor there.... and as far as my forgetfulness..well..I hate that too but it's very real!
Heres wishing you a better nights rest than I am having!!! Gentle soft hugz for you for a good day tomorrow...
k