Drs. response
 

Hey guys,

Just thought I would give you a little update on what happen at the docs office on Monday. He doesn't have a specific reason why my shoulder is acting up, but he said it could be a start of muscle atrophy. Is this what muscle atrophy starts out like? I don't know. I also told him about me not being able to feel much of anything in my hand and a portion of my arm and he said that is normal for some rsd patients. The funny thing is that when I try to hold something or feel something I don't hardly feel it, but I still have a lot of pain. Is that something normal? It just sounds strange to me is all. The doc looked at my hands and said at least the scabs look better, until I pulled my sleeve up a little and showed him the two on my hand. He jokingly says what am I going to have to do with you put gloves on you. He says i need to stay away from what is causing that. I said then i would have to stay away from my mom because she is the cause most of the time.He just kind of laughs. He put me on the generic form of riboflavin to see if that will help with my shoulder and told me to turn my scs up if I can tolerate it. he did say that it is normal for people like me to go through things like this with as much nerve damage as I have. The new meds he put me on is 750mgs twice per day. I guess I knew that some of this stuff could happen, but I didn't think it could happen to me. I guess even though you think you are prepared for anything since I have done my research you are never ready. When I left I cried because it was still a shock to my system especially finding out that once you lose feeling it will never come back and that I might have muscle atrophy started in my dominant arm. My husband just said we knew this could happen and that was that. He didn't seem to care that it is still a shock. His mom was wonderful she understood what I was saying. Why does it seem to be such a shock to you even when you think you are prepared for it. It is just not fair. I also think to myself if I start to lose use in my dominant hand will it happen to my right hand since it has started in that one too. Am I waisting my time at going to school now? What happens if I finish school and can't do the job that I had gone to school for? Sorry I am still kind of emotional over all of this. Well hope you are are doing better than me. You all take care and hope to talk to you soon.

Tracy

Hi Tracy,
 

Both of my hands have started going numb now. It started about a year ago in the right which is my worse and now it's gone to my left. They get completely numb. Now I am starting to have problems with my feet.

I am right handed so I do know what you are talking about when you wonder about doing things you need to do with them. I can't open jars, I can't hold on to things. I am always moving my feet fast because I dropped something heavy.

I did notice also that my right leg all the way down is smaller then my left now. Saw that yesterday. I bought this beautiful antique dressing table with a big round mirror. You sure can't miss anything in it. Boy am I getting old. LOL

I too wonder what is next with me. I try to keep going. As far as the sores I get them under my chin and I have had them on my face. I finally got them cleared up but it seems like when I have a flare up they come back.

I admire you for going to school. That is great. I think for one thing it keeps you from staying at home stressing out more about what is next.

I do hope you start feeling better and as far as things progressing, I know they have with me but that don't mean they do with everyone. I do know with RSD, we always have surprises.

Feel better soon.

Ada

Heh, it is totally understandable to be emotional about all of what you are going through. I was told I have CRPS over a month ago and have all sorts of new things going on, like all the nerves in my body have gone haywire. I can't help but think, what's next? How much more can I take? Why isn't my husband having a similar response to mine about this whole thing? Does he really understand? Etc.etc.etc. I KNOW.

With the husband. When I first told him it was like, well we can get through this. He wasn't really listening. So, I started to tell him a little bit at a time about things. My pain and potential long-term effects. The 'Did you know' about things related to CRPS. I found it helps to give him small doses at a time, plus he is a little more inquisitive about it now, same with my mom. She had the well, "mind over matter" is all it will take attitude about this. I find explaining to people what the worst case senario is or what other people can go through, similar or worse than you, helps. Sometimes it isn't until after I have said something to someone that it starts to sink into my own thoughts that I could be that person if I don't get the right treatment, if I don't educate myself or know that those treating me understand what they are dealing with. I am very protective about what happens to me. I want to get better, I want the right and good treatment. I break down all the time and get flaired up because of it but then I try teaching myself new ways of trying to calm down. It also keeps me grounded on what I need to remain focused on, getting better.

As for swelling. That is the most common symptom of RSD. I have very little of it, whatever you do, do not apply ice directly to your nerves. The cold will help reduce swelling but little is know why the swelling occurs the way it does with RSD. If it does become excessive they can drain it.

Insofar as feeling and not feeling. There are different types of nerves for different things. I really don't remember them all, there are four. Ask your doctor to explain. I know there is the vasomotor (movement), the sensory (touch, feel), temperature, and ? I can't remember but anyway. I don't have nerves in part of my foot. I can feel some things but not most things. If I stub my toe I react with an owie but really it didn't hurt. Yet, when I had my nerves cut out it was all the other tissues around it that hurt. This may be similar to what you are experiencing. You don't have the feelings of the nerves but you do of the muscles. They can feel like the same thing sometimes. Pain can be experienced in many different ways in an area and swelling can be caused by different things, though pain and swelling are common to RSD. Both of which is not very well understood by anyone. Kind of like phantom pain. The body feels the limb is still there and agonizes over it even though there isn't really anything there to agonize over anymore. Some research says because nerves send messages to the brain, which is then reinterpreted to whichever sensation or movement the signal says, over an extended period of time the brain continues to think the messages are being send, even though they are not. So, sometimes the brain becomes a broken record skipping on the same spot and has to be retrained, if it can be, to skip past that spot and move onto the next song. That's my understanding of what I have read. Anyway, rambling......

If you feel like you need the confidence of a psychologist, I would seek one out. If you think you need a second opinion, get one. Ask tons of questions. Don't feel too pressured to be past something or over something too soon. Things are what they are and you have to decide what things are really worth getting worked up over or those things you can effect. Otherwise, I wouldn't risk the flair ups over it. Besides you already have too much on your plate. Please, don't take these as harsh words. They are meant to help and be supportive. I sometimes am not the best with writing responses and online.

Hope you can find a happy place every once in a while....TTL J.

HI THERE
Yes it is normal for some RSD patients to get numb limbs. My leg goes numb but I have a lot of pain in it - my mom can't understand it.
I feel so sorry for you ((hugs)), have you had any tests done to confirm whether it is Muscle Atrophy?
You have worked so hard at school. I am 12 years old and I am unable to go to school due to my pain.
Carry on working hard - you never know you could get better one day
Take care
Alison