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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

[QUOTE]In my rant I forgot to ask a few questions:

1. No one says you have CRPS for life so why do they say...get it into remission?[/quote]

I don't know why doctors won't be up front about it. I guess they think by not saying anything they're sparing a person's feelings but in this case I don't think that's right since all you have to do is go online and see there is no cure. Geez, more people newly diagnosed get the crap scared out of them by reading things than by having the doc gently explain it all.

RSD is for life. There is such thing as remission but not very often. It is scary but it's the truth. Remission is having no symptoms at all. As with cancer, remission is what it sounds like. It can come back if you're injured again or rarely for no reason at all.

[quote]2. People talk about it being worse at night, attributing it to having nothing to do. Is that why the pain wakes me up at night?[/quote]

Don't have an answer for this one but I don't think it's because there's nothing to do. IMO I think it's because of the temp differences and barometer changes that come with nightfall. Could be wrong but it's my theory. :D

[quote]3. No one talks about how long they are given treatment by PTs from the time it is diagnosed. Why is that? Has anyone been through this with WC? How long do you figure they will cover these treatments? (OH, I live in Canada/Alberta but am curious about your answers).[/quote]

I was a wc case. I was in PT 2 times. The first time for 6 sessions, the 2nd for 10. I think it's a case by case basis as with all things RSD. If it helps then they'll keep it going. If the PT person says, time to stop this because it's only making it all worse, then it stops.

[quote]4. Does the cold make the pain worse?[/quote]

YES!! I'm very glad to live in Florida. We do get cold weather but not as intense as up north and no snow! Cold hurts, barometer changes hurt, rain hurts....

[quote]5. If someone has it on the one side and then has it spread to the other side, is it gradual or total, and does it come on just all of a sudden?[/quote]

It can be any of them. In my case, it spread from left knee/lower leg up to thigh and into hip. It then spread to right foot up leg and into hip. It took about a month I guess for that, maybe less. Things are rather fuzzy. I went full body in 11 months. It's not that way for everyone. Some it's very slow and could take years to spread from the original site, other fast or in between.

[quote]6. Has anyone taken gabapentin? Did it make you groggy, tired or feel out-of-it? Lack consentration?[/quote]

I did take this for 1 week. Turned me into a lunatic, not joking. I know others who take it say it doesn make them feel tired. It takes about a month or so to build up in the body to begin helping then the other factor is the level in the body as well. It has to be a the right dose to work. Sometimes, as with any other drug, it won't help at all. You have to try and see. If it doesn't work then something else needs to be tried. Usually there's a combo of meds to control different symptoms.

[quote]7. How much of this can be dealt with via mind-over-matter? Can anyone say that this really works for them? To what degree did you have your pain prior to this type of alternative therapy?[/quote]

It's never mind over matter with RSD. It's either a good day or a bad day. A good day for me is when I'm not in so much pain all I can do is cry. I have found that keeping busy helps me to focus on the pain so much most days.But the pain is always there.


Hi Michelle1. I thought that thoses types of pains were less noticeable. Right before I started the gabapentin I was getting them REALLY bad but I thought it was just a come and gone type thing. At night I would be waking up because my entire leg would contract/bend like it was being pulled by a string with horrible pain at the same time. I was also getting lightning strikes that would go on for a minute or two and then stop. So maybe it is working for that type of pain?!? I am not brave enough to go off long enough to find out otherwise. Of course, I didn't have my diary then so...bugger. I do find I still get little shocks in my wrists and hands and I have been getting a few tremors and spasms lately. I find that when something starts irregularly it tends to come on later as a usual. I can't really say for sure.

Do you ever feel menstral when you are not? I mean lower back pain and cramping? Just something I have to ask.

Oh, no. I don't use cold. I did read somewhere that you had mentioned not to use cold. Personally, I am not a fan of cold for many treatments. I just happened to notice, with the colder weather, my arms didn't like the feel of the cold but that I couldn't get near the stove or put wood in the fireplace either. When it calms down it isn't so severe a response but I still do notice my arms give a slight burn but one I can manage. Thank you for trying to protect me on this one. I really appreciate it. Still no word from anyone about the referral to the spec. I should hear today about PT.

I need to ask a question, for those who have this in their legs, do you ever get the feeling, when you squat down or bend your knees too far that your knees are going to explode? I am curious if it is because I have swollen or I have just gained too much weight in my legs. I can't even sit in bed and try to cross my legs...not that I could for long because of there being sooo much sensitivity but my knees just react so badly. Common, not so common and experience?
Hope you are have a positive day. J

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