I don't experience all of the symptoms of RSD/CRPS yet I have been diagnosed with it. I have good weeks and bad weeks, but I do have to take my meds regularly. Cold weather, stress or if I bump my radial nerve causes my symptoms of moderate dysethesia, moderate allodynia with slow summation and moderate hyperalgesia. At times I cannot warm up my fingers (mainly on my affected hand) and this causes pain to shoot from my brachial area to my fingers. If my hands get cold (mainly affected hand) causes excrutiating burning feeling in my fingers.
Answer:
As the poster above (Elizabeth) said, everyone with RSD is different. Some have more severe symptoms than others, some people have some symptoms and not others. One well-known RSD specialist once said that he's never seen a patient who had all of the symptoms described.Also, you specified that you don't have those symptoms while on your medications. If you had all of those things before, isn't it possible that the medications are working?I think it's important to note that when you read other people's RSD stories online, you're not getting a representative sample. The ones who stick around to post the stories are the ones who have had a hard time finding something that works. Many people, especially those treated in that six-month time window, get better quickly through traditional treatment. In addition, others find that their medications actually work, and therefore are able to resume their normal activities (and don't have the time or need to tell their RSD stories).I think that it's great that you seem to be doing fairly well on your medications. I did also read your post on Neurotalk (the site the poster above recommended). I would urge you to post it again, in a new thread. More people will see it that way and you'll get more feedback.Also, I wanted to add that because your symptoms are upper-extremity and you mentioned something about the "brachial area," you might also want to post on the TOS (thoracic outlet syndrome) forum on Neurotalk. They seem to be a pretty helpful group. TOS has a lot of symptomatic crossover with upper-extremity RSD. So it's worth asking about. I don't know much about it myself other than the symptoms, mostly because I have lower-extremity RSD.Good luck with your treatment, and I'll see you on the Neurotalk forum!
Why don't you check with your doctor?
Every person who has RSD/CRPS is different. The symptom list is just a generalized list of all of the possible symptoms, but you do not have to have every symptom on the "possible" symptoms list in order to be diagnosed.I don't know a whole lot about RSD/CRPS, but based on your symptoms, you do sound very similar to other people I know who have it.Below is a link to a great online-support group for RSD/CRPS that my friend uses all the time and she gets great support and lots of information and has made a lot of friends.www.neurotalk.org is the main page and from there you can scroll down to the section for RSD/CRPS
Like it has been said before; RSD/CRPS varies from patient to patient. Your symptoms do sound like RSD/CRPS to me, but I would go ahead and keep working with your doctor for treatments. I have several of the same symptoms, and I know I do have RSD/CRPS. I also do not experience all of the symptoms, and many patients do not experience all of the symptoms of the disease, again it varies from patient to patient. I'm glad that your pain is controlled fairly well while on your meds. I do not have good results from the medications and have had to go to a Spinal Cord stimulator for some relief. Good luck!
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