More questions - Reflex Sympathetic Dystrophy Message Board

dayton · 12-23-2003, 04:59 PM

Ok, here's my update. I was work yesterday and my office was freezing. I looked down and my fingers on the rsd side (right) were almost black, bluish dark color. I freaked!! They have always been all kinds of colors when cold, blue, white and red, but never black!! I put them between my legs and they warmed up. I have started doing hand exercises like when you squeeze a ball about 40-50 times an hour. Is that ok?

Also my husband wants to buy me a bow flex machine. He says it will exercise all body parts. Does anybody know anything about exercise equipment??? Seems like a lot of money.

Also, why do some people get this and not others? Hubbie was gutshot in Vietnam, injuries, left leg and knee had to be rebuilt, head wounds, and he didn't get rsd. So why me?????

Also what do you do for the itching? I'm so afraid that mine may be going full body. I was doing so good too, but it seems like after that bad block, things have gone downhill. I'm getting bad itching around neck and in arms electrical shocks. The right hand is turning colors and the muscles in right leg are very sore to touch. I have started getting eye twitches and sort of like spasms in face.

Maybe it's just nerves. Ya'll know the stress I am under.

Horsie Nutt · 12-23-2003, 11:04 PM

Hey dayton, as far as squeezing a ball for 40 - 50 minutes... it depends on how it makes your hand feel. "No pain, no gain" does NOT apply to RSD patients. I'd talk to your PT about that, and especially about the bow flex machine. There's probably a lot you can't do and your hubby seems to think that if you exercise you'll be okay? <scratching head>

RSD is a disease of the Sympathetic Nervous System, and my guess is that some people get this just like some people get diabetes, cancer, or whatever. I guess we're just the lucky ones <sarcastic expression> It's hard to say. I wonder if it is hereditary, I would hate to see my children come down with this at some point.

As for the itching, rub, don't scratch. Take benadryl too, or something for itching. Try creams too. I don't know what else to do....

I hope you get to feeling better and the itching stops, and that you aren't going full body. Go talk to your doc, tell them you need time to discuss a lot of things with him, tell them what is going on when you make the appt.

Take care, I hope you feel beter.

<Hugs>
Cathy

destinyevans · 12-24-2003, 08:01 AM

Hi,

I agree. My goodness. A bowflex seems really silly. (scratching my head too!) Getting your pain under control should be number one. Blocks, blocks and more blocks. Of course only if you are getting relief from them.

If you can't get the pain under control, how could you possibly exercise?

When we mention exercise for RSD, most of us are talking about gentle PT, not working out on a machine. Remember, you need to use the limb, but not overuse.

As far as RSD being hereditary, there is only one article posted on the net that states 5% of the people surveryed had 1 or more members of their family had RSD as well. That isn't a huge amount, but enough to make me wonder.

Hugs Destiny

saluki · 12-27-2003, 12:57 PM

Hi Dayton,
I hope today is a better day for you. I totally agree with Cathy and Destiny. No bowflex-- well at least for quite a while. --And whats with the the 50 time ball squeezing.
Squeeze- hold a few seconds and release slowly!!!!!!
Better than that go into one of the therapy catatalogues and get some yellow exercise putty (yellow is usually the softest)
and try to squeeze that or pinch it but slowly with a lot of breaks and never until pain. Personally I think its best to stop before fatigue. I find if I'm fatigued I've already past my acceptable point. This is a viscious cycle that you are trying to break and overdoing will bring it back with a vengience.
The blocks didn't work for me. I'm going back to pain management once more but then I have an appointment
with a physiatrist. I think there are really two routes and I
want to see someone from a different perspective than an
anesthesiologist. I don't know how it will turn out but I want to find out about the Botox and the Thalidomide and anything else out there. I'm around Docs alot and I find they get boxed into their own specialties.

Anyway, back to the subject, before you spend on expensive equipment why don't you join a health club and do some of your execises in a pool (a heated one). And ask your therapist what you can gently do there.

Believe me , I know whereof I speak. Last week I was so
calmed down and was in a routine with 0 on the pain scale for
3 days! ! with no pain killers -I was overjoyed--The only thing that made me nuts was taking the hand outside 55 degrees was a trip to antarctica which takes hours to calm down from-- but other than that boy was I celebrating along with news of a clean mammogram.

Now this week the hand and shoulder therapist pushed all the appointments together and the shoulder guy who I love
did all this trigger point therapy and then pushed for how much passive motion he could get. The the hand guy gets excited with the color of my hand (it was good) and some movement and proceeded to have me tie knots and screw and unscrew nuts and bolts the whole time.--This went on for three days------ By the time I left my whole arm and hand was mottled and swelling. I'm back to square one!!!!

The hand therapist is back to yellow putty assuring me he won't go so crazy --that maybe he overdid it and we'll get back to where we were.
I have to believe this is doable and beatable. It's that we have to know our own limitations and listen to our bodies.

This is not a matter of no pain-no gain. You might want to refer to Aly B posting on 12-03-03 What is a Mcgill-Melzack
inventory about the gate control theory. It kind of compares differences between us and a hockey player.

Lastly I can't believe this is hereditary, but maybe a predisposition. In my case my skin has always been sensitive
I could go into a store try on a dress and break out in a rash.
Go to the Doc--same thing. Get blood work or a shot- 5 minutes later I'll have passed out on the street. And I
break out from so many meds or have side effects no one has.
And to top it off had an autoimmune reaction to sulfa which lasted for years. So maybe there is a predisposition but I have to think that is all.

I'm glad to know we are shutting the door on this year and hope all of us have nothing but better times to look forward to. May you all have a healthy pain free or pain tolorable year
with understanding from your loved ones. Hugs, Susie L

samgm2 · 12-29-2003, 09:48 AM

FWIW.

Just ask yourself if you feel the course you have been on has been working. If not, time for a change.

Why persist on a course that is not yielding results?

Try something else. Try EVERYTHING ELSE!

I like your husbands idea of the bowflex. Its a nice machine. I've used it. However, if you are up to it join a health club. They have a lot more machines and there are others there. Ask husband to join you. He sounds like a man after my own heart.

Sam.