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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


ddd,

I'm sorry but what is the STS treatment? I'm not familiar with that term? Maybe I've seen or heard about it other than sts. Are you meaning SCS? Spinal Cord Stimulator?
I do somewhat agree with what your doctor is telling you about her PT.
It's a fine line between using the leg so she doesn't get or continue to get atrophy and muscle loss but at the same time you can't just PUMP up the physical therapy because that extra pain can be hard to control and flare ups can cause rsd to spread sometimes.
I personally had to stop physical therapy. I was in pt for a year and a half,after my nerve blocks completely turned on the rsd every time I would do physical therapy it would make things worse. I'd have a flare up that nothing would help with.
I do have atrophy and it's hard no regain that muscle back,especially when you can't exercise.
I have been told the "move it or loose it" but not to much. As long as you can move the leg you are using the muscles so you won't have total muscle loss but the body can be weak and can lose some.
I try to move when I can. If I can walk across the floor,I do. If I can walk in the store for milk and not use the wheel chair,I do. I do have to use the cane but it does help to keep the muscles in use so that I don't atrophy that much.
I do agree that if she's in that much pain then physical therapy can make it where it takes longer for the pain to decrease.
Has the doctor talked to you both about flare ups? Is she possibly in a flare up? In some cases flare ups can last quite some time,even months. Is it possible that if she takes it easy while still trying to use the leg that if it's a flare up it will settle down?
I would be asking the doctor that. Since she is having nerve blocks and should be decreasing in pain it could be a really bad flare up.
I know really bad flare ups. On average I have in least one a week. No matter what I do I can't move and I can't get out of pain. Most of the time it is because I over did it or because it's cold. Winter weather can play a big role in flare ups with rsd.
With my flare ups I get these horrible spasms. My last flare up caused a constant spasm for 5 and 1/2 hours. I only stopped doing the "floppy fish" for like 15 minutes and that was broken up.
I hope she starts getting some answers and some relief. There can be ways to comfort the rsd without meds.
A heating pad can help with soothing the rsd. As always consult the doctor when trying or wanting to try anything new,even if it's a heating pad. The more they know the more it helps. You can also ask her doctor about Baclofen. It's a strong muscle relaxer and can help sooth the pain,especially if she has to be doing something,even if it's a doctors appointment.
I hope she gets some relief. By the way.... How are YOU holding up. Everything ok? We're all in this fight together. I can't tell you not to worry about your daughter but try and stay positive. It will help the both of you. Even if it's just taking some time away from rsd. It can be hard, watch a funny movie you both enjoy.Maybe do each others hair,or paint finger nails. Write down the things that make you both happy and think about them when it gets bad.Anything to put a smile on both your faces can help. I know it sounds weird but it can help. It can make her feel a little better,even if just for that moment.Take care and stay warm,
Deanne





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