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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Hi. I don't know where to start. I have been reading through the postings and see that most of the people here are well versed on RSD/CRPS.

I was just recently diagnosed and should be starting treatments - physio for strength training and range of motion physio. I have also been on a low doseage of gabapentin for a few weeks and have been given the okay to increase the dose every few days as necessary (went from 300mg - 3x/day and am at 900mg 3x/day). So far no change. I am guessing I have to wait a few days for my body to adjust? I don't really understand how any of this is suppose to work. I still get the burning and have the sensitivity, though some of the other pains aren't as bad or noticable.

Back at the beginning of September I rolled my ankle on a pice of wood at work. I had extreme pain at a specific spot on the inside of my foot at the time of the injury as well as up both sides of my leg to my knee. No one seemed to pay any attention to's just an ankle sprain. I kept going back to the doctor because the tensor they were telling me to keep on was becoming really painful to wear. So, I got rid of that. Then I couldn't tolerate to stand for more than a few minutes, plus I have to wear steel toed boots and I couldn't handle them anymore. So, one day I told my boss, after only about 3 hours of being at work, I didn't think I could actually handle the pain of being there anymore that day and that I would go back to the doctor's office because none of this seemed right. My doctor took me off work and I haven't been back since. I have been off for a month now and don't know when to expect to be able to go back. Chances are my job won't be there for me anymore.
During the time that I have been off, work has treated me like crap, until this recent diagnosis; I have been through an MRI and Nerve conduction. Both tests came out with nothing. My own doctor has said, let's try gabapentin to see if that works. The original doctor who suggested I go for the tests had said upon my first visit to see him that it was CRPS and has recently said try the gabapentin. The tests were only to rule out any other potential factors. Unfortunately, this doctor isn't one I can see regarding treatment or perscriptions and my doctor admits to knowing nothing about it and suggests I get someone who does, like this other doctor. I told my doctor that I would have to continue with her for perscriptions but???!!!! Who is the doctor here?
Okay, so my frustration is that my pain has gotten progressively worse. It seems with the start of every week I develop some new pain or place for the pain but don't have a doctor to tell it to. I was told by the diagnosing doctor to attend a functional assessment. Okay. I only thought I knew what pain was. The next two days involved using a crutch to gently get around, the bottom of my foot was soooo tender I could barely touch it to anything. When I did walk I would have to stop every few steps because the burning pain and tenderness got so bad. I nearly cried three times the other day when I had to go into a store and back out, yes I was using a crutch. I am afraid I am dealing with people who don't really understand what they are dealing with. The first person I met, range of motion person, kept handling my leg/ankle/foot, I know they are suppose to to some degree, but come on! By the end of it he seemed to understand how bad it can be for me but admitted he wasn't aware of this type of condition. The other person was also pleasant as could be, did show concern for my well being but put me through such tests that require walking - on a beam (front/back/side), walking carrying weight and trying to run or at least walk quickly. I can't even wear a bloody shoe! I wear flip-flops because they have very little to them - they don't have much material, they don't have any areas that really push up on my foot(arch) and I can slip them off easily. Also, I can't stand for more than a few minutes without the pain getting really bad. I did tell her this repeatedly. The response was well we need to get an idea of what you CAN do. I really did try in all these tests but after the pain I went through the following two days, it seriously felt like someone was chopping at my ankle trying to cut it off! Blahblahblah....URGH! I will be going back (WCB) as I did call and they said someone there did have a client that has CRPS not that long ago. The people I was dealing with may not be the same throughout treatment either.

SO many things are going through my head. I have been to so many different websites to read all about this condition and treatment options. I would just like to know that the path I am being given to follow is going to be the right one and not make it worse. Plus I am a little scared about not being able to return to the same type of job I had before (cold is a big issue for me and makes the symptoms worse). I am apprenticing as an electrician, which requires lots of lifting, standing, climbing, outdoor work, etc. I am also a woman and, despite what everyone says, I get pushed just a little harder than everyone else. I want a medication that isn't going to make me 'drugged out' so I can take it and go to treatment, do homework, get groceries, leave the house. I want confidence in the people who I am dealing with and understanding from other people.

Tell me how to make it better and that this is really all normal. That chances are I should be able to go back to work full-time. I don't get too much swelling, that has to be a good sign. My skin has been drying out really quick in a couple of spots - don't know what that means or that I have to watch out for. I get burning in my other leg, sometimes only at the same time as my other leg but usually in the morning for a few hours. I have pain from my foot all the way up the outside of my leg to my hip (sensitive all the way up and points of major burning). Points around my knee that are tender. Is there anything you can do about the tender spots on legs or feet? I am going to go now. I have made this really long and very boohoo me. Sorry about that but I needed to get this out somewhere.
Thank you for listening. J
[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.



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