How many rsd'ers where a brace?
 

I recently rec'd a copy of testimony from a doctor saying that a person had moderate RSD because she didn't wear a brace. My thought process is I can hardly wear socks, hate shoes so why in the heck would I want a brace.
I want to know how many of you wear a brace?

That doesn't sound right because I thought things used to immobilize the limb were BAD for RSD. I used to wear a flexible fabric one if I knew I would be in situations where I would be walking a lot or in situations where I could easily turn my ankle or anything (like walking on uneven ground). I would also put it on very loosely if I was wearing a Lidoderm patch on the ankle with no sock to keep the patch from falling off (haven't done this since I got the TENS unit though because it is much better than the Lidoderm patch on my ankle when mobile). But that statement sounds like it is from someone not familiar with the condition. If you immobilize the limb excessively you aggravate the condition. So aside from the pain not allowing you to wear one, it shouldn't be recommended anyway. It often is in the beginning when they don't know it's RSD and think it's a sprain or something...but once RSD is diagnosed it shouldn't be.

Of course everyone is different...but I don't see how that could be used to determine if it is a "mild" case or not.

I agree, but he states that most patients with RSD don't want anyone to touch so they where a brace to protect the injured limb. Ican't imagine.

Then I guess I'm an exception for wearing a wrist brace. It hurts putting it on but I like having some cushioning in case my wrist gets bumped. It also tends to make people more aware to keep away. The immobilization doesn't concern me because my wrist is fused.
Is that the kind of brace you're talking about?

I assume it is one of those cases where each individual has to decide what is the lesser of 2 evils. It hurts to wear socks...but I wear them because I want to protect my ankle from cold air and breezes. The heating pad I wear is heavy and hurts...but the relief from the heat offsets that so I will wear it until it hurts more than it helps. Same thing would go with braces I guess...if you feel the benefit of the protection offsets the pain, then it is the lesser of two evils.

But regardless of those personal choices...it is not recommended for RSD patients to wear braces so why would a doctor use that as his criteria for deciding how "mild" a case it? Seems silly because you could argue that your case is more serious because you can't even handle the touch of the brace to get the benefits of the protection it might provide. Just seems odd coming from a doctor...

Jimbo, is this a soft brace? Everything at some point in the day feels like I have a cement brick on my foot from my slipper or sock and both have to come off. I also had to take my bracelet off, because my left wrist is was hurting and it felt like a weight was on it. I do see your point that it makes others aware and it protects your wrist. But I could not personally stand the weight.

Catra, I think that some dr.'s still think like everyday people in that, well they aren't that bad, they don't have any type of cast or mobility device, etc?????? Just like the fact, I had a driver take me to the door of the dr.'s office. I had to go 15ft. waddling and scooting. I told the dr. I had a rollabout for distance further, but I can go short distance without. But because it was not in front of him, he feels I don't use a mobility device. I really have to wonder, how they got their liscence. Didn't they have to listen to their teachers. How come now they don't listen to the patients?
:shocked:

Was it a work comp doctor? I was so annoyed when I read the report from one I saw. It was shady enough that this guy I had never met before was walking around the waiting room while I was waiting for the appointment. Then he almost ran into me and my mom in the hallway on the way to the room (I was in a transport chair...thought he was sort of weird and creeped me out a little). Then he ended up being the doctor and while I thought it was weird I assumed it was a coincidence. Whatever, the visit seemed like it went fine. He told me there was something seriously wrong with me and that I probably should be in the hospital.

But then I get the report and there's nothing in there about any of that, but everything that he did observe like me trying to get off the exam table and needing help, me trying to walk and falling, was all stated in a way that made it sound like he thought I was faking and every symptom I said I had he would say, "She CLAIMS" whatever it was. Annoying...but since he really couldn't say that anything I said was wrong or that he observed me doing things I said I couldn't he had to resort to using loaded language to make it sound a certain way. But THEN...I read that he watched me go out to the car and that because my mom was standing behind the wheelchair that he could not observe me getting in the car to see how I got in, but that he could say I was not lifted into the car by my mother. What the heck is THAT? My method of getting into the car out of the chair at that time was falling out of the chair into the car and pulling myself into position...but he makes it sound like I COULD have done something that I said I couldn't like stand or walk...but he didn't SEE me do anything that I said couldn't (because I didn't because I couldn't). Slimy, sneaky, no good...well...you get the idea.

So if this guy was paid by work comp then I guess it makes sense that he would impy something like that because he actually has no evidence to support his statement that the case is mild so he makes something up. I bet if you WERE wearing a brace he would have said the opposite, saying that because you could stand the touch of a brace then you were exaggerating how sensitive to the touch you were and therefore have a "mild" case. You can't win with people like that.

Leg presses were part of my physical therapy exercises and because I did them as part of physical therapy they said I was exaggerating how much pain I was in when having to push carts of merchandise at work. Whatever...these people just suck and there is nothing we can do about it except fight their nonsense with real evidence and actual facts (and this doesn't always mean you will win in court just because you are right).

Anyway...sorry for my venting on the subject. Stuff like this always gets me riled up because it is frustrating and I hate it when stuff like this happens to good people who are suffering. I know it's not all work comp doctors...but my experience with them has been mixed and just a couple of bad ones are enough to show you that they are out there and hurting people.

Alt,
Yes is a soft brace fastened with velcro. The same brace they put on my right wrist when I broke it. I think it makes people more aware to not bump into me. Also hides the scare and gives me some cushion if I bump into something...

Hi Alt1268,
I always leave these type of doctors with a little prayer...I say "Lord let him (or her) have the pain I have for about 24 hours to see then what they think abount my pain." It makes me feel better anyway. They are clueless and always remember they are paid to say the things they say by the company they are representing (esp work comp docs). The more they can ax us from using their company's money the more the company can keep and the more they will get paid. Unfortunately, we are the ones suffering. I was in a wheelchair once and one wc doc said "Come on into my office now" and just looked at me. I was in a wheelchair and just sat there and said "I need help." He made his secretary help wheel me and she about hit every wall in sight. He saw me for 30 mins and thought he knew everything about me. Amazing. I even had another wc doc tell me that he had the same type of injury and he was fine (as if to say I was lying about it all). Also, unfortunately these type of docs see so many people abusing the system that they automatically think everyone is and we are the ones that suffer because we really are hurt badly. These docs are a waste of time and energy for me and I try to stay out of their offices as much as possible because I don't have the time and energy to be insulted by their stupidity of rsd.

I had no use of my right foot leg for over a year and was given a plastic boot to wear. I thought it helped me enable my foot to be on the floor at times. But turns out my chiropractor said it was the worst thing for me as it torqued my leg the wrong way. She said she would have rathered me not to wear any brace and see her earlier instead. I wore that brace for 8 months or so and she had me out of it in a month!

I would say to all to fight for the truth and for what you believe in.
Take care,
kathy d

Kathy, it tickled me when you talked about saying a little prayer that the dr. would have pain for 24hours. I have done that. We all must thing a like. I know when I was in my boot after the cast. I could not get comfortable. I steadily adjusted and adjusted, because it just hurt. (didn't know I had RSD at that point) I complained to the Dr. for a month. Of course he never did listen.
I actually feel bad for the patient involved in this case

Catra, I am the same way. I need to wear socks and sometime slippers just to protect from the cold air and breezes. Not to mention my foot is always cold. I am on an extended release pain meds so this helps. But I am still wanting to get a census.

My wife wears a brace on the arm she broke that triggered her RSD. She's wears it constantly, now for nearly 10 years. The docs have asked her to get rid of it but she wont. :(

I have RSD in both knees and wear soft braces on both of them whenever I leave the house or am going to be standing for awhile. The support helps me, and actually a stronger pressure with compression does not aggravate the pain as light touch does. They also help keep down the swelling. After several hours with the braces on, though, they start to cause more pain. So it does come down to the lesser of two evils at some points. I agree that while they sometimes cause me more pain, when I have them on I don't feel my pants rubbing up against my knees causing lots of pain every time I move, which I can't stand. It's give and take. I've said before with the braces that it feels good to put them on and it feels good to take them off!

Maybe 8 months after I got RSD/CRPS in both feet and ankles following an injury to the tendons (as confirmed on MRI) on equipment at the gym, I fell victim to a physical medicine doctor at Cedars Sinai's pain clinic who determined that my feet had splayed, requiring more support than was available with an ordinary orthotic. Without consulting any of the pain docs, she put me in "ankle/foot orthotics" (AFOs): rigid pieces of molded plastic, support built into the foot piece, which was hinged to a Velcro strapped piece around my shins. Due to the hinge, I had no lateral (side-to-side) range of motion, whatsoever.

At first, they were great, and I could walk blocks without pain. That probably lasted all of a week. After that, it still hurt to walk, but the AFOs made it easier, at least until I didn't have to be on my feet, then there was a great swell of relief as I could take them off, followed - maybe an hour later - by the onset of intractable pain that wasn't touched by up to 20 mg. of oxycodone.

Eventually, I realized that I was in a vicious cycle, and was persuaded to drop them entirely, at which point my overall pain levels dropped significantly. Once more I had to learn the lesson, immobilization and RSD don't mix! (The casting of both feet shortly after the injury having really brought on the RSD in the first place.)

I would advise anyone to avoid a brace to the maximum extent possible, where even now, as my bare feet hurt, all I have to do to get some temporary relieve from the deep internal pain in just shake them a bit. And I understand why so many pain docs will tell patients to avoid guarding the limb at all costs. (Although the real danger is said to be atrophy.) That said, if you absolutely require something to keep your arm from avoiding contact, etc., I would get something as flexible as possible, and then make a point of slipping out of it at least a few minutes every hour in order to fully mobilize the limb. Even due a little weight bearing exercise: hold a book out in front of you for 30 - 60 seconds. It's that important.

Mike

Mike it's really sad that Suzy will not ditch the brace. Her forearm has atrophy. Her skin is very pink, transparent, muscle tone is very thin. When she sits she rests her arm on a pillow. At GW hospital the doctor commented that she could not understand why someone with RSD would want something touching her injured area 24-7. I really don't know, but what I do know she is super protective of that area of her body.

A couple of suggestions.

Has she tried Lidoderm patches? They help to provide some pain relief, BUT they also reduce the stimuli that can most aggravate allodynia such as fabric touching the skin, wind, etc.

Prior to the RSD onset I had been wearing a wrist brace for 2 years or so. After my 3rd surgery (the trigger for my RSD) I could no longer stand to wear a brace. I became very proficient in guarding my "bad" hand, though. I did it so often, that I end up causing my elbow to get worse, along with new pain in my right shoulder, trapezius, shoulder blade and neck.

Has she tried working with a pain psychologist? I don't think I could have broken my habit of guarding without help.

And lastly, finding the right combination of pain meds, in the optimal dosages, was key for me. I choose to limit outside stimuli by staying in my home, so that I can CONTROL my environment. Even a tens unit, for when she's in public, might be a good idea.

When I'm out in public, I now have coping mechanisms I learned in therapy (such as breath work) along with meds to help me deal with the pain and not further exacerbate my RSD by guarding.

Edit to add: I use a pillow for travel and at times at home--pretty much when my pain is elevated from unusual activity. If she's like this all the time--her meds are not adequate IMO.

I have very little atrophy at this point (it was much worse years ago) and while my range of motion is decreased, it's within normal ranges.

She tried the patches but the patch itself was causing a rash. She does use several kinds of creams, lidocain, ketamine and others. But not on that arm as far as I know. I do know the doc has suggested it. She has talked to a psychologist sometime back when she was working. Every once in a while, not often at all, she will replace the brace with what looks like a thin sleeve or sock but did not wear it for long. I think she knows she should try do get rid of it. In time perhaps? :)

I recently saw cashmere arm warmers for sale. Something like that might work as well for her to reduce the stimuli, but not allow her to keep the limb frozen. Good luck!

Jim, I'm the same way with my arm. It hurts to put it on and off but I like the extra protection and people seem to focus on it and avoid touching me there...

If you run across a link for the arm warmers that would be something I may purchase for her. :)

One thing about Suzy is if a stranger brushes up against her in public she takes it very personally as though they did it on purpose. I've told her so many times that they just don't know, it's not on purpose. That brush or bump causes her pain, a lot of pain. Those without RSD pain just can not fathom it even a husband of one who does. One thing I'm convinced of is the reality of it, although Suzy thinks I don't believe her which is the farthest from the truth. Sometimes she gives me the impression that she'd love to share her pain with me........no thanks, one in the family is enough! :eek:

Dear Jim -

Don't sell yourself short. Among all the souses I know, you have most clearly gone the extra mile to take her pain in. You are clearly empathetic and do not feel feel personally threatened by her situation.

Would that could be said of all spouses. Or in the immortal words of Henny Youngman, "Take my wife, please." :tongue:

Mike

Jimking,
I know the feeling your wife is going through. I went to the store and got into one of those little wheel chair carts. I guy came up behind me said excuse me then hit me without giving me a chance to move. He didn't apologize (or at least I didn't hear him) because I was to upset from him causing an increase in pain.

Oh lord...even when I was in the wheelchair if someone bumped it that would send me reeling. I'm actually having an easier time now that I can walk a little bit with the walker. The walker (and my slow pace) tends to keep others away from me...and because I am the one in control I can avoid people a little bit easier than when I was in the chair and someone else had to push me. But of couse...I haven't tried any place that is very crowded yet. But the walker does provide me a bit of protection without really immobilizing any of my RSD limbs. Of course...I know assistive devices are frowned upon too but the pain and other symptoms have gotten so much worse that I need the walker (at least for now) to be safe and for my physical therapy.

In the beginning they gave me all sorts of air casts and then put me in one of those moon boot things. At first they seemed like they helped but the pain grew so much worse during the time I was using them. At the time I hadn't yet been diagnosed with RSD so no one could understand why I was getting worse with the immobilization...and I certainly didn't know enough then to put the immobilization together with the pain getting worse...I just thought that whatever it was was getting worse just because. When the doctor first mentioned RSD and I did some research it was like a lightbulb went off in my head...all of my odd symptoms suddenly had an explanation and no one else had been able to give me one before.

Or when someone comes up to me and pats hard on my arm to say "how ya doing?" :rocket:

Oh god...that's the WORST! My boyfriend's relatives were in town a few months back to celebrate my BF's brother's wedding and the ALL did that to me. I wanted to scream in pain but I know they didn't mean to hurt me. I couldn't hold the tears back though and we had to leave the reception early because I just couldn't handle it anymore. I felt AWFUL...plus I was in pain.

Jimbo, I agree you're feeling comfortable and not guarding your hand is the most important thing. But wearing a brace with RSD is generally not a good thing... Does your brace restrict ANY movement in your wrist, hand, or fingers?

Have you tried a tens unit in public? It does accomplish the same thing while (potentially) helping, as opposed to the brace which can harm you further.

When I wear two Lidoderm patches--the first covering the front of my hand, the second over my wrist, (and I cut little snips into it so it is more flexible and stays on) it is a big white indicator that my hand is damaged and it actually brings more attention than I'm comfortable with, but nobody touches my arm while I'm wearing them.

The frequency with which you wear a brace, is going to contribute greatly to how big of an issue this is. When atrophy is very apparent, like in JimKing's wife's case, I'd be very worried about any brace use.

There have to be additional options others have figured out as well. :(

Lit Love,
I thank you so much for your concern but my fingers don't work anyway. I haven't made a fist since the accident. The nerves controlling their movement are messed up.
I'm not worried about the lack of wrist movement because it's fused.
The brace, which my PT calls a corset, brings attention to my arm and blocks air being blown on it which gives me pain...

There was a period I was miserable being out in public. The more out of control my pain was, the less rational I was, and the more personally I took the "bad manners" of others.

I hardly ever go anymore, but there was a period where I used to use movie theatres as a way to recoupe when I was out in the world. After takings meds, or driving a distance, etc. Depending on the behavior of my neighbors, it could be relaxing or it could be a horrible experience. It would baffle me when I go into a mostly empty one and someone come and sit behind me and then proceed to kick my chair, or even a few chairs down for that matter. If they're fidgety and sit in the same row, it will drive me crazy. I used to get irritated. Now, I tend to just move, not worry about it and realize I'm hypersensitive.

If I'm in a car with someone, the force they use to close a door, can make a big difference in my pain. When my son was a teenager, and I was not adequately medicated, I'd ask him to wait for my slow behind to get out of the car before he'd close his door. I can't tell you the amount of tension this caused between us. He was sick of hearing about it, I was sick of him forgetting, etc. It got where even when I was dropping him off, I'd get out, wait for him to close his door, and then get back in. The more my pain was out of control, the more foul my mood...

Those of us that are ubsurdly sensitive to environment and vibrations are not easy to live with. It can feel as if your being tortured 24/7. Some inconsequenstial thing to everyone else in the world, can seem catastrophic to us. The better managed our pain, the less of an issue these things are!

JimKing--I have close family members that I highly doubt have ever bothered to even do an internet search about RSD. You seem to be incredibly compassionate. I'm sure your wife doesn't want you to experience her pain, she just wants you to comprehend something that she knows is likely uncomprehendable for you. It can be a very isolating experience--both physically and emotionally.

I am not in remission, but my pain is being managed (with meds and a variety of coping strategies) to a level that I'm no longer in constant acute stress. Perhaps, that might be a goal for her to work towards?

Not working and not moving are two different things. It's only because I worry, you pepper freak, that I ask the hard questions. The greater the dysfunction, the more worrisome that you'll end up one of the extreme cases. And as difficult as my RSD can seem, I am well aware that it is a walk in the picnic compared to those that end up needing eventual amputation. (Not that I wouldn't be happy without my arm if the rest of my health would return, but since that doesn't work...) :hug:

Jimbo -

At the risk of putting too fine a point on this, the choice may ultimately become one of working with a really good PT in re-mobilizing your hand (I would suggest someone with one of those new post-grad 4-year DPT degrees: I learned their knowledge of neuro-anatomy is incomparable) or being in a position one day of seriously contemplating amputation, where there are significant rates of phantom pain and/or spread of the CRPS to the stump.

I hate being so blunt, but don't see any way around it. I'm sorry.

Mike

Mike,
I'm not excited about the amputation idea but I'm not too clear about how to get finger nerves that are not getting any signals from my brain to work. If it wasn't for the pain I could move them with my other hand but not on their own. Short of finding where the right nerves are located and, for lack of a better term, hot wire them PT won't do anything...:(

Jimbo -

Just out of curiosity, have you tried any "nerve gliding" work to free up nerves which have themselves become constricted through years of immobilization?

I know for me it made a tremendous difference in relieving late afternoon and early evening spasms in my legs, that had become intractable to anything but Marinol, the exact replica of the Delta-9 THC molecule from marijuana which we discussed some time ago: stuff that had so many side-effects that it wasn't worth the candle. But after years of bad results in PT - now a long time back - I was persuaded to return with people who knew what they were doing, and it had a fantastic result. It didn't do much of anything for the primary pain in my feet, mind you, but getting rid of maybe 60% of the leg spasms was huge!

So if I learned anything, it was a variation on an old theme, never say never.

Mike

My friends,
I know you all worry about me and talk about things to help and please believe me I truly appreciate it greatly.
What you don't know is that I believe the surgery I first had due to my accident was not completed without mishap. I never regained total control of my arm like straightening all the way or the feeling of burning.

It was explained to me that in order to place the rod inside my bones they started at the front of my shoulder, pushed all the muscles and nerves out of the way, drilled out the marrow down to the elbow and dropped the rod thru then cut thru my elbow to connect the rod to my elbow.
I don't know about you but that sounds on the side of yukkiness to me.

I had a balance problem ever since the accident too. Later I was told this was contributed to my head trauma, which FYI, it was so deep and bleeding so much that the EMT stapled my head to stop it. When I arrived at the hospital they removed the staples and sewed me up.

It was not until my neurologist had a CAT Scan done that my atrophy was discovered. She also performed all the conduction and block tests and it was determined that the atrophy and the involved nerves meet at the point where my spine enters the brain cerebellum area.
Since drilling into my head isn't going to happen, treatment for the pain and staying off of my feet is the only option left.

Sorry to go on and on but that's the whole scoop...

Jimbo,
2 things. Try L-arginine over the counter vitamin. It was highly recommended by a plastic surgeon I worked with who did nerve releases in both hands and feet.
2- consider a nerve release if you have to have another surgery. I don't personally recommend anymore braces. It keeps the arm and hand from moving, those your brain learns to deal without them and they start to dye.

Just suggestions.:hug:

Alt,
Everyone's concern and suggestions are very much appreciated. Don't ever think that I dismiss them.

I am trying to make everyone aware of is that the brace doesn't restrict movement. There is no movement. I figure I might as well protect what I got.

Are you familiar with Bell's Palsy? That's how the left side of my face feels. My mouth and eye lid are drooping and the left side of my face feels saggy and kinda numb. The burning pain is now from my left foot up to my thigh and even my hips ache. I don't think a brace at this point is anything to worry about.

I had some stress yesterday that started a flare up that even an extra Lyrica didn't help. It's very demeaning to just sit in this wheelchair and cry.

Sorry for getting carried away again. This family we have means a lot...:grouphug:

Jimbo,
I know what Bell's Palsy is, it likes to miminic a stroke 99% of the time. I know how your feeling, esp. with the cold coming. Both top's of my feet are burning and I am frustrated with the shoes I have, all of which touch the tops. My slippers feel the best, but even those and my socks and pants hurt.My ankles also burn, while my knees, back and arms just ache.I know that this maybe the winter, I to end up in a chair. But I try not to think about it. My husband loves me I know, but he still doesn't get it. This is a very scary disease. But I know GOD is fighting the monster and he will win, the battle.