It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I just started seeing a new family dr. I have to "get him up to speed" on all of my issues. I have RSD and TOS. Two very hard to understand disorders. He seems willing to help me, though, so I'd really really like to take him somethng to "work with." So if you can all PLEASE answer these questions for me, I think it would be helpful for both him and I. I see him again on Monday....thank you in advance:

1). In what part of the body is your rsd located?
2). What "cocktail" of medications are you on (mgs/# x's day/etc)
3). Have you been in physical therapy? Occupational therapy? Did it help?
4). What tests have you had, and did any show anything?
5). Is your rsd as a result of anything you can pinpoint? (Car accident, surgery, etc).
6). Have you had any "blocks" and did any of those help?
7). Have any other therapies helped? (i.e., massage, tp therapy, etc).
8). What does your pain feel like? (i.e., burning, throbbing, aching, etc).
9). What symptoms do you have?
10). Does anything irritate your rsd? (light, noise, breezes, etc)
11). Has your rsd spread? If so, was it originally in one hand or foot, and spread to the other...or did it spread to other LIMBS? How long do you think it took to spread?

I'm trying to get him to understand that the meds I'm on are NOT working, and the pain meds need to be a bit stronger. But, Dr's don't like to prescribe pain meds...so i want him to see what others take. Some of the meds I don't feel are working, and I want to see if any of you are on the same. So I'm not tellin' what I'm taking, just so I can get the info from you

Thank you, in advance, to all who will respond for me. I think this will be really helpful at my net appointment...

Hugs
LisaM
1). In what part of the body is your rsd located?
It started in my right foot and ankle in April 2005. It has recently spread to my right calf and knee.

2). What "cocktail" of medications are you on (mgs/# x's day/etc)
[list]
[*]Avinza (24-hr extended release morphine) 30 mgs once daily
[*]Flexaril 10 mgs twice daily (I have muscle spasms in my foot and leg)
[*]Norco 7.5mg six times daily (this is too much and will change to something else at next appt)
[*]Cymbalta 120 mgs once daily (for pain and depression
[/list]
There are also meds like Lyrica, Neurontin, Elavil, and other non-narcotics that help with nerve pain/RSD. I can't tolerate them because they make my depression significantly worse without a great benefit to my pain.

3). Have you been in physical therapy? Occupational therapy? Did it help?
Both -->PT helped ALOT. It helped me start up a lifelong treatment program and also helped me recognize my limitations (ie not running anymore) without giving up on exercise completely.

4). What tests have you had, and did any show anything?
The biggest thing is that my right leg is 2 degrees cooler than my left leg. I also have swelling and color changes.

5). Is your rsd as a result of anything you can pinpoint? (Car accident, surgery, etc).
I took a chunk of bone and cartilage out of my talar dome (a bone in the middle of your ankle/top of your foot) in August 2004 while wakeboarding. The binding did not release, causing my tibia to come down on the talus, causing this fracture. This type of fracture can usually only be seen on MRI, so it took 8 weeks for me to find an ortho to know what to look for. I had arthroscopic surgery in October of 2004 to clean out my ankle joint and drill into the talar dome to try to stimulate growth of bone and cartilage. This did not work, so I had a knee to ankle cartilage transfer in February 2005. During this entire period, I was in a 3-D walking boot from August 2004-May 2005. I spent over 2/3 of this time on crutches. So, I think that the combination of the injury and the length of time the treatment took (only 2% of people need the 2nd sugery) caused my RSD. There was nothing that my doctor or I could have done differently.

6). Have you had any "blocks" and did any of those help?
I had a set of 6 lumbar sympathetic blocks (each 1-3weeks apart) ending 6 mths ago and 1 last week. They help for a couple of days, but not much more than that. I know that they can put RSD into remission, decrease pain, or stop the spread....mine just doesn't seem to want to go away.

7). Have any other therapies helped? (i.e., massage, tp therapy, etc).
My PM doctor believes in a muti-disciplinary approach. He has a bio-feedback counselor that has done wonders for me. She does both bio-feedback and also talks with me when I need to. I also did a 4 week program involving bio-feedback, PT, and education at my PM doc's office. Right now, I am using a machine called RespeRate. It helps you relax and focus so you can do bio-feedback at home. It helps release endorphins and it doing wonders for me.

8). What does your pain feel like? (i.e., burning, throbbing, aching, etc).
It is constant pain than runs from a 3 to 7 on the pain scale. It usually is burning and stabbing/sharp.

9). What symptoms do you have?
Pain, sensitivity, swelling, discoloration, fatigue (from the pain and the meds)

10). Does anything irritate your rsd? (light, noise, breezes, etc)
Breezes, anything touching my foot/leg. I can't wear any shoes except flip-flops and slides and they can have NO heel. I also can't wear socks. If I spend too much time inactive or active, it gets worse. Also, I have a daily routine including relaxation and exercise that is essential that I stick to.

11). Has your rsd spread? If so, was it originally in one hand or foot, and spread to the other...or did it spread to other LIMBS? How long do you think it took to spread?
Mine spread 11 months after diagnosis. So far, it has stay confined to the same leg, it is just moving up.

Hope this helps!
txmomof3
Hi Lisa! And welcome to the boards! A pain management doctor you would need a referral for. You sure asked alot of intersesting questions though, which I'm all sure we could digress on. I'm sure there is one in Michigan, Detroit?? perhaps? I've seen about as many docs as you if not more too. Is your a work/personal injury case or did you get RSD by yourself? And what is TOS??? :confused: Maybe I can help if I know what that it is and how it would affect the central nervous system. I'm on a mixed bag of meds-- 3x 60 mg. Mscotin, 5 x 325 mg prcs for bt, 3 soma, 3 xanax, and remeron to sleep with. I started using a STS machine, and I've cut back on most meds. Depending on the weather and level of activity. Balance is the key. I live in Hawaii, and a few degrees in temp sends me to the moon because I'm acclimated. PT only helped on my 4th try and that was after my surgery one year later. I had to get the pain under control before I could move my upper left arm, which I say is still only at a 20% functioning rate. It has spread to my left leg--then that comes and goes, and sometimes to my right leg. It has a mind of its own. Hopes this helps. Good luck and welcome again! Aloha Skooze





All times are GMT -7. The time now is 08:17 AM.





2019 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!