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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.

Hugs,

Karen
Welcome to the boards, You found a great site. Everyone here is so nice, they will never down you.. You can vent anytime you want here... Most of us will always understand what your feeling and saying..
I have to say.. I Karen hit the spot.. She answered all your questions the way I would of..
The spreading does happen differant for everyone.. Mine started with herniations to the cervical spine.. In one month It started spreading to my right hands.. In about one yr. It spread to all four extremites. I have what they call the mirror image spread.. Everything is exactly the same on both sides of my body..
As for the Neurontin, I take it.. It helps me out alot.. I have to agree with Karen, most of the time you take several meds.. each one of them help with differant symtoms.. The neurontin does make you very tired, it just makes you out there for a while if you know what I mean.. It took about 8 weeks all together for it to start working.. My advice to that is stick with it.. give it a chance.. I also take lamictal and tylenol with cod..
When I first was DX. I was so confused.. I was happy it actually had a name to it.. It took them four yrs to dx me.. The good news is, if you've been dx early enough you do have a better chance of reversing this.. I do believe RSD stays with.. You just don't get the flare ups.. Like Karen said.. Usually injury with bring out the RSD again...
You did mention you were not sure what drs to see with this.. I think the best thing would be for you to see a neurologist or a pain management dr.. They usually know their stuff regarding RSD.. Just keep in mind.. There is no cure for RSD. So their goal is to maintain your pain the best they can..
When I was first DX, I use to search the web and make myself go crazy.. scared you name it.. I have learned not one person with RSD is the same. This is what makes is so hard for the DRs.
I had PT for two yrs.. Everytime I would go I would come home in pain.. Finally after seeing the RSD specialist he told me never to go if it hurts.. I stopped right away. The only thing it did help was my herniations..
I know you must be so confused right now.. Gosh I remember that feeling so well.. I still get confused. lol lol.. I guess its all the unknown.. You just never know what the next day will be.. I would wake up so depressed, feeling sorry for myself, telling my family memebers they don't understand.. even the drs.. cause they don't.. only one whos had it will understand the feeling.. I have learned through the yrs what I can and cannot do physically.. Warmth helps alot.. Ice is a NO NO.. Ice may feel good at first. but in the long run it can do more damage.. Don't let the PT use ice.. Mine used it for two yrs.. (this was before I saw the specialist)..
Well, I don't want to through to much at you all at once.. Then you will be even more confused. I just want you to know, we are all here for you.. Any question please don't hesitate.. I wish I had this board when I was first DX.. One more thing.. Stress will flare you up.. Thats a biggy..
Well I hope all this information everyone gave you helps a little.. Please let us know how your doing.. Thinking of you..
Michelle1





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