Sorry another question
 

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.

I'm reading what you wrote here and I see you describe rsd discoloration! The pale as a corpse arm, that's what my leg used to look like when I elevated it. When I put the leg down, like sit in a chair or standing that's when it would turn all purply and blue. The arms tend to not discolor as much because of it being elevated all the time! I have rsd in both arms and hands. The only time they discolor is when i let them hang down by my body.

Every symptom you list is RSD. If you've been dx'd by a doc then don't pay any attention to the ot. They like to think they are doctors and give an opinion when they don't know diddly! Their information is usually because they read something and if you don't have all of the symptoms they read about then you don't have or can't have rsd. BULL!!

You do not have to have every symptom listed. My leg swelled horribly in the beginning but after I learned to walk again, the swelling disappeared completely and didn't come back! The only thing I have in the way of swelling now is minor and only in my ankles.

Don't let this person make you doubt your dx. Listen to your doc. If this OT insists on giving a "diagnosis" then demand another OT. You could also just tell this person that you most certainly DO have rsd, you have a very competent doctor and if he/she wants to dispute your diagnosis then he/she should talk to your doctor about it! People like that burn by butt.

Big Hugs,

Karen

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.

Here's the link to a list I found right after being dx'd. I printed it out and it was helpful more early on to check and date the symptoms. Now, it helps me see what if anything has changed and if I have anything new come up to discuss with my doc. It has every symptom and then some!

http://www.geocities.com/bondi1959/symptoms.html

It's not the one I meant but it's very interesting as well.

I've had almost all of them at one time or another and a thousand besides.

Thank You
 

I was really starting to wonder. But the doctor that diagnosed me apparently didn't know enuf about RSD and assumed that after 2 weeks of the OT I was cured. I was having some severe bruising on my hand and I KNOW I didn't hit it on anything. I called him about it and he told me it couldn't be from my injury cuz my RSD should be gone. The lawyer I've been consulting told me to go back to the first doctor I had seen after my injury until I can get into a PM. I had to go thru steps to get there but I am finally going to be able to go on Monday. People at my work are always telling me I need to keep moving and using my arm. I tell them I know. But I'm so afraid to do anything with it at work in fear that I will make it worse. OH I work at a Truck stop, and I only make coffee and am supposed to stock the cooler, but because of all I have read I shouldn't be going in there so I stopped doing that. There are times that I have to do some writing and after I get done doing just a lil bit of writing my fingers stay in place and I have to slowly but surely pry my fingers open and get them straightened out. I showed one lady I work with what happens when I try to pinch my thumb and pointer finger together. My thumb starts to spasim really bad. She stopped questioning me after that. Anyway I just wanted to say thank you all for the info.

Just a Side Story
 

Karen,

A lot of what you say is true about some people in any health field thinking they are a doctor, from the receptionist on.

However, I had a curious situation. When I first developed RSD symptoms in 1986, I went to so many doctors looking for a diagnosis I lost count. I saw several neurologists, some of whom thought I had exotic diseases like malaria, typhoid, etc. Everyone was stumped.

After about six or seven frustrating months, I mentioned all of this to a college friend who was an Occupational Therapist specializing in hand rehabilitation. She said “That sounds like something I have seen called RSD, but I have never seen it in a foot.” She discussed it with a respected rheumatologist the next morning and he arranged an appointment for the same afternoon. That was how I was finally on the right road to a diagnosis!

So, don’t just discount the opinions of all non-doctors. Sometimes people like therapists see a lot of different things, and also have the time and/or attitude to really care about people.

Mike

I wish I could tell you that you did not have RSD because of the lack of a symptom. However it sounds like you do have the same color issues as many of the people on here. Also like it has been said not every person with RSD have the same symptoms. My RSD was almost caught in a ER, however the doctor did not diagnose it because my foot would turn purple not blue. In hind site I wish I would have asked him what the problem would be if it turned blue.

I wasn't making a blanket statement about all pt's. I've met a few people in the last 5 and a half years who's pt person was the one who said, I think you have rsd. It's just 9 times out of 10 they're the ones that say dumb crap like that when they're not qualified. They're not docs. I said what I did because I wanted Iffynah to know that it's what the doc says that counts not a pt. I've seen way too many people panic and had their care snatched away because of a pt who said, you don't have it or you can't have it, or like hers, you don't have all the symptoms. It causes much more harm to us than the physical pain we feel. We start to doubt, we think we have to have every single symptom when that isn't the truth. We all need to know that we can stand up to those who are wrong and go somewhere else, choose someone else and listen only to the doc(s) who have diagnosed us and is dictating our care. That's all I meant.

Hugs,

Karen

I don't have all of the symptoms either
 

I don't have swelling and only have redness occasionally when I'm cold. However, I have all of the other characteristic symptoms. I've had CRPS II for three years, and knew after 1 year that I had it. However, my first 3 neurologists (older, and not experienced with many CRPS patients) wouldn't diagnose me with CRPS because they had never seen patients without swelling. The second one didn't believe that it had spread from my right arm to the rest of my upper right body, because he had not seen that before. He retired, and #3 had seen neuropathy patients with upper arm, neck, and facial symptoms, but was skeptical when it spread to my right leg after 2 years because he had never seen that before. They all just said I had a generic peripheral neuropathy, with other symptoms that they weren't sure were related. It's SOOOO frustrating when you know your docs are skeptical about your symptoms. I'm very fortunate that my nerve conduction studies early on clearly showed that the venipuncture injury had resulted in damage to my radial nerve. They did give me appropriate drugs, however, which helped until about 8 months ago when the symptoms worsened.

THEN, I finally paid out of pocket (outside my HMO) to see a CRPS guy at a university pain clinic. Best money I ever spent!! He said that I have characteristic CRPS II symptoms (from venipuncture injury to sensory branch of my radial nerver). He added another med, which has helped significantly, and I started seeing my psychologist again. He handles a lot of pain patients, and gave me additional ideas for meditation stuff and other coping strategies, which help. He's also a great listener.

So, I finally have the correct diagnosis. One journal article says that CRPS on average see 4.8 physicians before they get a correct diagnosis. In my experience, docs are skeptical of things they personally haven't seen before.

There's a good journal article out there published by a guy who is proposing that there is a large subset of CRPS patients without significant swelling or redness. It's Bruehl et al, 2005, Pain 95:119-124. Unfortunately the PDF is on my computer at work.

So hang in there and ignore your OT (actually, get a different one if you can).

Good luck!

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

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