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All do not have classical symptoms

Imahotep, your right, I have at times had the exact situation you described. I too have been told I do not have the "classicl" signs of RSD- but I have been diagnosised with full body RSD by the three of the top doctors in the world, Dr.S, Dr. Rohr in Germany and Dr. Kirkpatrick- so there you go- we are all different. The monster affects everyone differently.Wish you didnt have it too. CZ

Quote:

Originally Posted by Imahotep (Post 320834)

Someone posted a really great link to RSD symptoms a while back. I think it was Sandel but am not sure.

It's a truly remarkable list. There is no symptom that appears 100% of the time. Even pain only affects 97% of us. In my case if pain were my only problem my life would be unaffected. The pain gets pretty bad but even when it does it's usually brief. The constant pain I get rarely is most distracting. It's much more the fear of the pain and the other symptoms that are so debilitating. I never know when things will hit or how I'll feel in a few minutes. Sometimes I'll feel fairly good for hours and hours on end and then it comes to a screeching halt and everything hits me at once. I'm afraid to use my hand or arm except for the simplest tasks because if I overuse it it WILL hurt the following day. It gives me no warning whatsoever that I'm overdoing it so I always have to protect it. If it's forced too much then my blood pressure goes through the roof, pain increases sharply and eventually it gets pseudoparalysis. This is extremely disconcerting because it doesn't feel real, it feels like it's fine but the hand is virtually paralyzed. ...and of course there's gonna be a lot of pain.

The first few years there was no real overt sign of trouble except that it rarely had the chamelion syndrome where it would turn various colors for short periods. Since it has spread and affected my mental state. I can still be in good moods but the depression is just under the surface. Anxiety in various forms plagues me and can interfere with sleep (and anything else) for weeks on end.

Then there are the dozens of little physical problems that seem to require great effort to keep at bay but sometimes I wondeer if most don't just come and go on their own. To look at me most people wouldn't know most of the time. One day I limp and drag my whole side and the next day I feel healthy as a horse. But most every day I wear out after just a few hours.

If I fight this it fights back. So I try to just give into it and do as much as I can.

I have great doctors now who seem to understand (even if I don't) but many of the docs don't seem to understand at all. Mine wasn't diagnosed until it was too late and there was nothing to do.

I am not sure where to post this but this seems a good place. I stopped coming to the forum for about a month after being told I did not have RSD by the Dr. giving me a nerve block. I went to the same guy that gave me the first 2 blocks that I had. The first was in my lower back not helpful, the 2nd time was right in my L leg which is where my RSD is located. I talked with my pain Dr. about sending me again as nothing was working for the pain. When I went the Dr. doing the block said he was going to do the lower back again. If I had no relief this time it meant I did not have RSD and that I had neuropathy instead. Well the block happened and nothing came of it. He was very excited to tell me I did not have RSD. I left the hospital very frustrated. My pain dr was on vacation so I did not have a follow up appointment for a few weeks. I was getting depressed thinking what am I going to do now. Things are not getting any better and now I am not sure what to believe. If I did not have RSD great. But the liklihood was small in my opinion. So I didn't think I should write on this forum during that time if I did not have RSD out of respect for you all. Well a visit to the pain dr. I have RSD no doubts. She said I have been following your case for two years now and I have seen how things change for me. She said she has a lot of experience with RSD. So she took a look at the med list again and upped the nerontin to 3=600mg a day. My last appoitment I asked her about it because I am not thinking right at work and it is causing problems. In this state I think I am doing fine and than there are things that happen that show me I might now be thinking okay in writing reports following instruction, or hearing the instruction right. I also have a hard time verbalizing sometimes. Most people would not know anything was wrong, but people around me everyday see a difference. She is taking me off of the neurontin and going to replace it with Lyrica.
The day of my appointment I was driving and had an attack of vertigo. I was lucky to be able to pull off and park my car. We called 911 and they took me by ambulance to the hospital. I was there for about 20 hours. I got sent home but could no longer walk without help due to the dizziness. I was out of work for 11 days. My boss is very angry with me. She doesn't like the absentism. I couldn't help it. I need to leave this place of employment. I had gotten a note from the pain dr. that I could only stand 5 min. at a time. I do job coaching. So this last week i was sent to job coach a person that works 4.5 hours a day in a warehouse. I can sit sorta but I have to be with them shadowing them. This person is Developmentally disabled so I have to help him in all of the tasks. I take the chair and sit when I can but I am walking the warehouse and standing with him. This seems to be fine with my boss. Urgh. I gave her information about 6 months ago on this disease and had her watch the tv video. She didn't seem to be too responsive about it. I just wanted to educate her. That you may not see it but it is there. The past week I have been on an 8-9 pain levels and nothing is working. I do all my tricks. I don't know what to do next and feel the frustration as you all have described.
If you were following my story I did graduate on June 21st with my Master's Degree in Special Education so I am now a certified teacher. That is brining on more anxiety though on how I can do that job. I can't decide if working with pre-schoolers is a better gig than working with older students. They each have a fair amount of walking and stooping bending with the position. I think I want to do some admin work and just write up student plans. IEP's.
Thanks for the vent and I won't not post due to some stupid dr. telling me I don't have RSD again. I know better now and I think most of us have gone through this misdiagnosis stuff in our journeys.

Oh and Ali thanks for being you. You inspire me as well.
jo

Quote:

Originally Posted by Iffynah (Post 320601)

Even if you don't have all the characteristics of RSD doesn't mean you dont have it right? The only thing I don't really have is the discoloration. Sometimes my arm is completely pale sometimes it looks like a corpse. Other times it looks just normal but get red blotchy rash looking thing, or turns purple but mostly right around my wrist. But I have the constant pain, my swelling isn't constant so much anymore, the palm of my hand sweats really bad, and is very tender to the touch, and its usually really cold compared to my left arm. I've only been diagnosed with RSD since April but have had all these symptoms since the day after my injury happened. But the occupational therapist that I had seen said that I don't have the coloring of RSD.

Sorry to say this, well not really, Iffynah, but the OT you have that said;"You don't have the coloring of RSD"!! Well, he/she is off their "Rocker"!! What color are you supposed to have?? rainbow coloring?? :Doh:Geezzzzzzzzz... these people that say that, be it OT, MD's, PT, nurses.. or what have you, don't know and are so ignorant of this disese of RSD it makes me ill! mad as heck too!!:mad: Take care!~Love, Desi