Reflex Sympathetic Dystrophy Support Group

Hello Everyone:

I am probaly sure that this is has already been on the table,but anywho I'm asking anyway.

After your diagnoses have any of you ever notice other problems in your body arise? Or it seems as though you are sicker now than you've ever been since you found out that you have RSD/CRPS?

Hi F280

Difficulties concentrating and memory problems are the obvious things. The weird thing is that I used to gets colds pretty easily if I stayed up too late. Now, despite staying up until I can no longer stay awake, (in order to sleep) I'm getting colds less. Can't think of anything else right but see sentence one.

fim

This is actually a very good question. I also have memory issues but believe them to be related to either medication side-effects or the RSD itself. This winter I had a cold and had not had one in probably 20 years and it lasted weeks and weeks, eventually becoming an infection and needing antibiotics. I've never in my life been to the doctor regarding a cold until this year, either. Other than that I can't think of any health problems.

With this question I would like to add another one which is, do we actually KNOW that RSD/CRPS is an auto-immune disease? I would think if it is an autoimmune disease that it would have many affects on our overall health. I've read here that it is but only in the past year or so and never heard of it before that. Is there someplace that RSD being an autoimmune disease became a new fact? In all of my books about it (5-7 probably) it was never mentioned, but they are probably all about 2-3 years old or more, or at least two years old... please tell me how RSD became an autoimmune disease if you can because this drives me crazy. My pain doctor has never mentioned this... have any of your doctors mentioned it? You would think it would be important for them to tell us this, wouldn't it? If anyone knows more about this, please let us know that, too. Thanks!!

gail

Gail it has been proposed in research papers. Then 2 years ago the RSDSA had a workshop of researchers, pain docs, RSD/CRSPS patients,... on RSD/CRPS as an auto-immune disease. There are papers in our research section as well as many new papers from 2008 to 201o on the subjuect at their research and resource area at RSDSA.org. Many of the papers are very technical so perhaps you can help me do the abstracts so we can have access to the papers? Give a shut if you are willing to help out. I want to get the papers abstracted and linked to our research section but would rather wait to see if we can get the papers in a resource and research section before I put them on. This is a new area and more research seems to be bearing this theory more evidence.

Rev.

I had issues and still do with osteoporisis. Then for approx 3 years I was having abnormal results (sorry guys) with my pap smears. For that whole time frame I was having to go to the gyn twice a year verss just once.

I was also diagnosed with dry eye.

peggy

I have osteoporosis, very common to RSD/CRPS sufferers; progressive immune system problems, again very common to those of us who have had this monster for years; bladder problems; lung disease; circulation problems, specifically Chronic Venous Insufficiency and Congestive Heart Disease, several back problems, ...

I have had the monster disease for 12+ years.

Rev.

I do get confused on occassion but I thought that was because of the pain meds. Same here as foot, used to get colds and now that you mentioned it don't think I've been sick since RSD. I never slept now I do since I changed meds. Since PJ got alittle personal, bowels are very loose, feel like I am on a constanst prep for a colonostopy!(no wonder I am dropping weight) Other than that..... I'm healthy...lol

Barb

Post edited by: Barcon, at: 07/02/2012 08:34 PM

Memory loss, difficulty finding words when talking. But I assume this is related to the meds? Other than that, not much else.

Hi Rev,

It makes me sad that you're having so many medical issues, and although I already knew of them I just hate to read again how many things you're coping with. You are a very strong person and can cope, I'm sure, better than most. I just wish you didn't have to.

Regarding the papers, I honestly don't feel capable. I could try to look at one and see what I think and even if I can comprehend it, but I no longer feel capable of doing research or writing as once I might have been, and I don't know if that is due to medications or other things, but I no longer can concentrate for long periods or read for long periods, something has literally happened to my brain. I don't know if the changes are permanent or temporary due to medications. But, if you want to direct me to something to read, I'll see what I think and if I feel able to help. It's truly not that I'm not willing, but honestly I doubt that I am capable.

Thank you SO much for the explanation of what has happened regarding RSD/CRPS being named an auto-immune disease. It has confused me completely and it seemed to come out of left field or something since soon after I slowed down in reading about RSD/CRPS because I had read 5+ books and much online, and I felt like I had a basic understanding of what "they" said about it, then the "auto-immune" term was used which really threw me. So, what I still don't really understand is this- is this still a theory or more of a certainty? Do we really know for sure?

Thanks again, Rev. and tomorrow I have my pain doctor appointment but will look for those papers and see what I can understand (or not).

gail

Hi Jon,

It's Gail and I'd love to ask you about your memory loss and "difficulty finding words when talking" especially since you are new to RSD and to some of the medications (I assume). Those are my two biggest issues other than pain that concern me. They are absolutely new to me since getting RSD and starting to take pain medications, but I've heard people say that they can be caused by RSD. Have you ever asked your doctor about that? It shocks me daily now that when I am speaking or even thinking or writing, my brain absolutely will NOT pull up the word that I need even though I know it is a common word or something that I've known for sure. At times I'll be writing here and have to stop and think or even just erase a sentence and begin again using other words because I can't think of the word that I need. A friend of mine is truly concerned about me, as I don't think she believes it's the RSD or the meds, but when I read that you wrote those two things, it makes me think that we're having the same reaction to something... I'm just not sure which one but it must be either the meds or the RSD. Which do you think it is? Do you have problems daily? Have you read of any specific medications that you take which might have side effects of this kind? Anyway,I'd love to know more about your problems with this. Perhaps we need a "new discussion" about memory loss. But, for me it's the words that I "lose" and can't come up with that really drive me crazy. It would be as if I was talking to you right now on the phone and suddenly couldn't remember a word I was trying to use and I knew the word and it wouldn't be a complicated word, but I simply cannot come up with it. Anyway, I'd love to know more from you about how you're doing and also from others!

Thanks so much!

gail