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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I have never heard of a doctor diagnosing RSD for billing reasons. Generally the in my experience, the opposite is true as it is a difficult thing to treat, patients are frustrated and need a lot of emotional support and there are often things like W/C and disability forms which no one wants to deal with if they don't have to. In addition, the fact you can touch yourself without pain is quite common, and I too can do that, but someone else's hand or clothes will cause burning and intense prickly feelings. My doctor explained the reasons to me but I forget the medical terminology. Can you get to a pool. Atrophy was setting into my legs because of the RSD and me using crutches and sitting in a lazyboy, but pool therapy enabled me to slowly increase the muscle which actually decreased the RSD pain (desensitized the area) In deep water you can move around more than you can on land and use a floation belt so you do not have to stand. If you can, give it a try. I also had nerve blocks after 3 years (took over two to get them to admit I had RSD) and it did not work but you may be different. What works for one does not work for another. Lyrica, Clonazepam, Gabapentin, elavil all in low doses have been a help too. Hope you find some answers soon. Laura.
I'll try my best to answer your questions (this is a long post):

Sharon, :wave:
I never had a nerve block. A doctor told me that it is a little late to do a block, but the doctor who diagnosed RSD over 2 yrs after my injury wanted to do nerve blocks...I felt uncomfortable with him since he never compared my injured foot to my good foot and he never answered my questions about sympathetic nerve blocks, rather, he told me to go online to find info! It's a doctor's responsibility to provide info regarding pros and cons of a treatment such as a nerve block. Do I feel like the doctors I've seen are good? Well, I've been to some good docs and some crappy docs that just wanted to scoot me out of their office since my situation doesn't call for surgery, so they wouldn't be making any money off me. Regarding doctors knowledgeable in diagnosing RSD, I don't think any of the doctors I've been to know a tremendous amount of info about RSD. I wonder how much is taught in medical school about RSD to specialists like neurologists. Yes, there are docs out there who are very knowledgeable about diagnosing and treating RSD, but I don't know of any in my State. I'm not sure what the discoloration in my foot means (the discoloration is only in my forefoot), as it only occurs in the shower when I bear all my weight into that foot for more than a minute...does it mean that the blood is leaving my foot? It's scary. I appreciate you writing...of course you are of help to me! Any info and advice helps.

Feelbad, :wave:
The type of steroid that was injected into my foot is notorious for causing atrophy of fat, muscles, and who knows what else. When the doc injected it, it felt like he hit a nerve :eek: . The atrophy didn't start until about a month after a steroid injection in the area of the injection. I injured my foot when I accidentally hit the top side of it on a hard surface...no broken bones. I had an EMG test which was normal. I don't have any desensitization whatsoever or any other abnormal skin sensation except occasional burning in the area of atrophy...I haven't had any burning lately, though. Other doctors have diagnosed me with metatarsalgia (a general term to describe pain in the ball of foot, which can be caused by lack of a fat pad like I have), fat pad atrophy, neuropathy. What other docs have I seen? I've been to podiatrists, a neurologist, a physiatrist (he was TERRIBLE), a pain management doc, and orthopedic surgeons. I am now looking for a new doc, but I don't know which type of doc to go to. Thank you for taking the time to write me.

Laura, :wave:
I read on a website (I am not allowed to post the web address) that there have been actual cases in which some health care providers have used RSD as a diagnosis for reimbursement purposes even though the patient did not have RSD. This could be considered medical fraud. The reason why people can touch themselves without pain while the touch from others elicits pain is similar to why we can't effectively tickle ourselves yet others can cause a tickling sensation...I'm not sure what this phenomenon is called, but it's all in the brain. I'm not sure a pool would help my foot as I cannot tolerate standing on any type of hard surface due to the lack of fat pad in the ball of my foot (it feels like I'm walking on bones). But I have physical therapy exercises to do at home...the exercises lead to more pain, unfortunately. I am so sorry to learn that your RSD wasn't diagnosed until 2 years later and that the nerve block didn't work. It's good that your meds are helping.

Eunie, :wave:
How awful that a knee injury led to all that you're going through with RSD affecting other parts of your body. RSD is horrible. I wish that your docs had diagnosed your RSD immediately...it seems a lot of people are not properly diagnosed early on. Have you tried any alternative treatments such as a hyperbaric chamber? I'm not sure, but maybe a hyperbaric chamber can help with circulation problems if that is the cause of color changes...maybe someone here knows more about hyperbaric treatments than I do. I'm hoping you get your nerve block ASAP...it's possible you may need more nerve blocks in the future. Has your doc put you on neurontin or lyrica for nerve pain? I'd hate for you to end up depending on a wheelchair as it's important to try to be weight bearing as much as is tolerable...I know you are in a lot of pain and a wheelchair would help take pressure off your feet, but it's critical that somehow your foot gets some exercise to prevent atrophy. I hope your nerve block helps you, and I wish for your pain to go away.
Hi Sharon:
Thank You for taking the time to answer some of my questions. Honestly, I have more questions than I think there are answers with this problem. I have decided to become as pro active as I can be at this point, and read, research and download all of the information that I can absorb or process at a sitting. I realize now that there are three different stages to RSD, I now know specifically what tests are used to determine whether or not a patient has RSD, or, as it is now referred to, CRPS. You see? It seems the medical community cannot even agree on a title for this disease/syndrome. LOL But, I do believe, that since my PM Doctor, is also a spinal cord specialist, and a surgeon, he was on top of the situation long before he even mentioned RSD to me. He put me on Lyrica, months ago, to help with the back pain I was experiencing from the injury to my spine. I really do believe that he bought me some time with this medication, and I feel that if I am assertive, and demand that the tests be done as soon as possible, and depending upon the outcome of the tests, and the Doctor's opinions, I will then begin appropriate treatment, including medications sooner, rather than later. I am ready to hire an attorney that specializes in RSD, or CRPS, in order to provide me with the optimum amount of attention that is needed for me to prevent this disease from progressing with even more aggressiveness, than it has. But, the more I seem to read and find out, the more confusing it can be. The only thing I am clear about, is what I hear said, on this board, by you good people. You are the only ones that I trust, and the only people that help me to hang on to my sanity some days. So, I want to Thank all of you for contributing to this board, and helping me, as well as so many others, by taking the time to answer questions for all of us that are muddeling through this diagnosis.
Diedre





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