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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

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Thank you everyone for your support and advise. Today was day two.

I really wish I had someone there to give me some idea of what to expect. I thought, okay so my ankle/foot is going to hurt and be really tender and my muscles are going to be a bit tight, tomorrow will probably be even worse. What I did not expect and found no one there to turn to was a full body flair up. I mean I know that I have been thinking it was in other parts of my body but today, even now talking about this, I am starting to flair up again. I near freaked out. In tears I went to the bathroom to put some water on my face and I end up seeing a nice bright red/purple patch on my one cheak, whereas the other one and everywhere else was nice and white. I touched it and my finger spot disappeared right away. I tried the other side and it seemed to disappear more slowly, more normal. Then I looked at my hands. My palms where bright red with white spots all over and on the backside from my knuckle to tips were red/purple in color. I could barely stand the touch of my clothes on my legs, back and arms. I have NOT felt like this before and didn't know it could get this bad. Then the pain in my left foot - shooting pains and aching - got SOOO bad I could barely walk. Where were any of the therapists? I didn't know what to do or to think and I was embarassed because I was trying not to cry or let anyone see just how bad it was. I dont' even want to say anything to anyone now because I feel like a fool and it is too much to explain to someone who doesn't understand. Plus, even if my therapists were there I don't think I would have wanted to talk to them, well the one anyway. She seems to meet me half way or so I thought. They still don't acknowledge that this exists in any other part of my body so how can I get real treatment. I thought she was the one that meets me half way but this morning during an exercise I told her my wrist/arm is really irritated right now and has been since last night. I got the brush off and well, let's get back to the exercises here. I have to leave soon.

When I went in this morning I told her I had some information for them. I spent a portion of last night finding specific information from all the National and International organizations for RSD/CRPS. I wanted to print off information that covered those things they have been telling me that are contradictory to the information I have been reading like the fact that gabapentin can and does make many people with RSD drowsy, etc., that RSD does and can spread, even over the whole body, granted it is rare but can happen, that cold is not to be used as a treatment on RSD/CRPS pts, etc....So, I said this is just some information that 'I' have been reading and I just wanted to give you an idea of where it is 'I' am coming from, especially since these sites have been my only source of information in addition to my online support group. The response was, well first, I applaude your efforts and interest (treading carefully here(her)) you need to take these 'STUDIES' with a grain of salt. Okay, I know that...I do have a degree, I am not an idiot and no these are not just some studies (not that I said that but it was what I was thinking). She continued....these are merely studies and you really can't go from them. What you need is to be here (at my PT place) because my PTs deal with real people and know what is best for me....end of conversation and on to let's get to your place of I am groaning.
My place of work requires steel-toed boots. She suggested we walk around and see what my job entails and what there is I can do. Sure, great. So, about those steel-toed boots. I know they have the little cup things that go over the end of your shoe. She responded quickly, I have a pair, not to worry! Great but if I COULD get MY foot into a pair of boots 'I' would be AT work and NOT here!....Oh, okay. Well maybe we could just meet in the office and review what your job requires, etc. Okay. Sure. So, they have desk work for me, as far as I know. So, how does this 'desk work' relate to my job as an electrician? If typing and writing aggrivate the condition in my arms or back does it still count as related to the first or the future second claim? Do I still accumulate hours towards my apprenticeship? If I am at PT for 4 hours everyday in the morning, 50 min north of where I live and have to go to work 50 + another 30min south to work for a couple of hours, how do I get any work done? And can I still get time off to write my exams and that week off to go do my labs for school? How many people think once WCB is out of the picture I get fired, raise your hand? (Yes, I do know they have to give me time off to complete my school but given the circumstances and the company....they have already been trying to replace me with no success.).
What do I do? I have emailed my CW but haven't heard back.
Oh, has anyone tried hypnosis for anything? I asked what the goal of hypnosis is and he said to maybe help me sleep better. Does this mean I won't have pain at night anymore or? I wish I had asked that question.
I also am getting another referral to another doctor, a neurologist. The last one was booking into March and doesn't expedite. Hopefully I will get an appointment soon. I told them I would have better luck with a neurologist than a GP and am glad the doctor there agreed.
Well, I gotta run. Things to do.
Oh, I forgot to mention that yes, I do have pretty good ROM. I am learning just how stiff I am though and how much my calf muscle has weakened. I am also noticing that my left should and arm are much more tight than the other side of me. This is the side that has been giving me more problems, which is just another indicator that something needs to be done to prevent this side and other places from stiffening/locking up on me. I did read an article last night that said that it is a falisy to believe that activity prevents the spread or worsening of RSD/CRPS. Sometimes it just does whatever it wants.
ciao J

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