Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 11-08-2008, 08:39 PM #1
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Red face The most newbie question ever-hairy legs

I am newly diagnosed with RSD and have been devouring all of the information that I can squeeze out of the boards, but this is an answer I've not yet found.
I actually think that the hair on my legs makes my pain worse (catching on things like clothes and stimulating the follicles), but shaving feels like I am making a leg filet. Anyone tried using dipilitory creams? Do they burn? I'm afraid...obviously waxing is WAY out of the question, but I'm convinced that the hair on my legs makes contact more sensitive and burning.
Thanks or helping a newbie!
Lori Lee
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Old 11-08-2008, 09:29 PM #2
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Hi Lori Lee,

At this stage it is very important for you to desenisitize the affected limb as much as possible. Still to this day (6 years with RSD) I use an exfoliation glove to gently massage and desenisitize my rsd foot and ankle. You can pick up these at any local drug store. When I was in Germany recently an ergotherapist came in to give me these types of tips. She gave me a very large soft paint brush to use on my foot ankle area. We used heated cherry pits too but mostly I found that the glove worked the best. I can now shave my legs and my physio therapist can work on my foot without me hitting the ceiling. Stay in touch with your limb, keep it warm and keep it moving, even if it is just a little bit at a time, it will all help in the end.

You can also do a lot to help your body heal and keep your nervous system calm. Avoid coffee, alcohol basically any kind of stimulant. Nutrition is very important as is deep breathing exercises. Some studies have shown Vitamin C to be very beneficial in healing for RSD patients.

I believe it is your knee if I remember correctly.

I wish you a speedy and full recovery from this.

MsL
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Old 11-08-2008, 09:49 PM #3
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Confused

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Originally Posted by Mslday View Post
Some studies have shown Vitamin C to be very beneficial in healing for RSD patients.

I'm sure there are some studies on this somewhere... but as far as healing---not so sure.... I take 3000mg of Vitamin C daily...have been for over 4 years... I believe it does help somewhat but I wouldn't say it heals.


As far as shaving legs... I understand what you are feeling... I shave mine as fast as I possibly can. I have found that this doesn't hurt nearly as much as my pants rubbing the hair on my legs. I sometimes think I can feel the hairs growing on my body.... I will add... that I really don't have much hair on my legs anymore... I think it falls out---that is if it is growing much at all.

Wishing you the best...
Abbie
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Old 11-09-2008, 12:12 AM #4
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I wish I was as lucky as to not have much hair growth. I have a lovely case of gnarly black hairs growing from the toes of my rsd foot.

Perhaps "heal" was the wrong term to use, as studies typically call the attention to prevention and management as indicated below. I've provided the link to the source for you to review.

"In addition to perioperative regional blocks, the use of pharmacologic agents including calcitonin, mannitol, vitamin C, corticosteroids, carnitine, and ketanserin have been advocated for the prevention of postoperative CRPS [14]. Interestingly, only vitamin C has been shown to be beneficial in prospective, placebo-controlled studies [22, 23]. Vitamin C is a natural antioxidant that is reported to scavenge both hydroxyl radicals [24] and superoxide radicals that produce hydroxyl and other free radicals [25] that may be responsible for the pathogenesis of CRPS. Zollinger et al. [22] evaluated the efficacy of administering either 500 mg vitamin C or placebo daily for 50 days to 123 adults with 127 wrist fractures. There was a significant reduction in the incidence of CRPS in the vitamin C group (7%) compared to the placebo group (22%) at 1-year follow-up (95% CI for differences 2-26%). Cazeneuve et al. [23] confirmed the benefits of vitamin C in a prospective nonrandomized study of 195 patients with wrist fractures presenting for surgery. Patients receiving vitamin C (1 g daily) for 45 days, starting on the day of fracture had a five-fold lower incidence of CRPS (2.1% versus 10%, p<0.05). This simple, safe, and inexpensive technique may have significant implications in the development of protocols for the prevention and management of CRPS.

http://www.rsdfoundation.org/en/Prev...RSD_Intro.html

Wishing you all well.

MsL
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"Thanks for this!" says:
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Old 11-09-2008, 07:13 AM #5
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Default You guys are great

Maybe it's because I'm early, but even dry towels feel electrified. Actually, as far as massage, I can only do really firm pressure. I figure this at least keeps the blood flow going. I've been doing a lot of PT to make up for the fact that I still have to have my knee in a brace in full extension for another few weeks due to the original surgery.
I've also been wrapping my leg in ACE bandages or wearing those tight Lycra leggings; presumably per my therapist says that stimulating the whole leg keeps the burning painful areas less prominent. Does this make any sense to the experienced folks? I can take it for about 4-6 hours, then have to literally tear then off as I feel like my leg is strangled...strange, I know. But does this "whole leg" theory undercut trying to keep my leg stimulated in the areas with the RSD pain?
Sorry to be such a pain and of no help to you all. Know that you have entered my prayers and are in my thoughts; just wish I could be of support at a higher level.
Lori Lee
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Old 11-09-2008, 01:17 PM #6
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You are not a pain at all, RSD is! All of us here understand where you are coming from. Yes it all does makes sense. It is good that you are doing lots of PT this early. Just keep doing what you can to try to reduce the hypersensitivity. As far as massage goes, you may have to work up to be able to touch the area in a light manner. That is one reason why my therapist offered me the soft bristles of a large paint brush, I could control the intensity of the movement on my skin from hard to light and back again. It is important part of the therapy to desensitize the area if you can, especially since you are still in a brace and immobile. Are you with a PT experienced with RSD?

RSD requires lots of attention, I call my foot "Princess" because she is so demanding. When I first got RSD my orthopedic surgeon didn't explain to me what was happening. Even though he knew I had RSD he did not send me for any therapy or pain management. He kept telling me to put ice on it and to do contrast baths, even when he saw that my foot was swollen, big, shinny and deep purple. I couldn't stand to have the ice on my skin and when I stopped doing it my surgeon made me feel like I was a bad noncompliant patient. It was very hard for me to touch my foot for a long time. I didn't get any help until about 6 months after I was diagnosed. Some say that that is still early but for me it was too late. Still in consideration of everything overall I'm doing OK now, it just requires daily management. I'm too sensitive to most of the drugs having had sever reactions so I've had to learn how to manage without most of the meds that are prescribed for our condition.

MsL
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Old 11-09-2008, 03:55 PM #7
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Quote:
Originally Posted by llrn7470 View Post
Maybe it's because I'm early, but even dry towels feel electrified. Actually, as far as massage, I can only do really firm pressure. I figure this at least keeps the blood flow going. I've been doing a lot of PT to make up for the fact that I still have to have my knee in a brace in full extension for another few weeks due to the original surgery.
I've also been wrapping my leg in ACE bandages or wearing those tight Lycra leggings; presumably per my therapist says that stimulating the whole leg keeps the burning painful areas less prominent. Does this make any sense to the experienced folks? I can take it for about 4-6 hours, then have to literally tear then off as I feel like my leg is strangled...strange, I know. But does this "whole leg" theory undercut trying to keep my leg stimulated in the areas with the RSD pain?
Sorry to be such a pain and of no help to you all. Know that you have entered my prayers and are in my thoughts; just wish I could be of support at a higher level.
Lori Lee

LoriLee

Keep exposing your leg to as much stimulation and touch as you possibly can. Expose it to a wide variety or pressures and materials - all of this will help to reduce the hypersensitivity and allodynia as much as possible.

I get a lot of pain from air moving accross my skin or my jeans/trouser hem touching the skin. When my physiotherapist masages my achilles tendon to keep scar tissue formation at bay this is incredibly painful but I allow all of these things to happen because the more you avoid them, the worse it is in the long term. Keep shaving and try the hair removal cream - only by trying it will you know if it is bearable for you.

At the end of the day whilst it is horrible, CRPS pain isn't useful - it isn't as though your body is in danger and the pain is a useful mechanism to stop you doing something stupid. It is pointless pain and neither shaving nor creams are actually doing you any harm.
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Old 11-09-2008, 10:38 PM #8
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I hate shaving but do it as fast as I can. I get myself on a low pain day which I still have to rev myself up to shave but it's not quite as bad. I'm certainly in a lot more pain when my pants are rubbing against what hair I still have left on my legs.

I tried using nair one time and that was the last time I ever did it! I would recommend putting a very small amount on a small spot to see how it feels first. I had done one whole leg and done half of my other leg when the pain and burning hit. OMG!!! I had never felt such pain and burning ever!! It took a week or more to finally calm down and go back to "normal". Shaving the old-fashioned way is by far the best way to go, for me anyway.

Hugs,

Karen
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