[Donna7]

Hi! I usually post and read the TOS forum, but am having a few problems with possible developing RSD...I posted my questions over there, and thought I might get some good answers here. I'm just going to cut and paste my post, as typing isn't a great experience (I know you all can relate!)

I've done some reading here and see you all have been through so much...I'm so sorry! I wish I could do something to help!

Hi, all! Well, I'm back with some more questions about RSD. Over the last year or so I've had a few "warning" signs, like some occasional allodynia, a little bit of burning sensation now and then in my arm, sometimes a little swelling and redness. This has all been pretty subtle, and I only noticed it because my doc has been warning me about RSD for two years now! I posted about this just before Christmas, when I was going in to a two-month flare ...but I've tried to be really careful about not pushing through the pain.

So, the latest news, and what's prompting more questions, is this: A few months ago I noticed my left arm (the TOS arm) feeling really hot. I was riding in the car with my husband and had a heavy coat on, and thought it was just the heater blowing on my arm, but realized the heater was actually blowing on the other arm. When I got to where we were going, I took my coat off and my arm was red and very warm to the touch. This dissipated pretty quickly, but...this started happening again the last few days. I've had two or three of the same type of episodes, another one today with a light jacket on, but a couple of times with no coat or even long sleeves on. The other night we were sitting in a Bible study when my husband reached over and touched my arm...I had noticed it was warm and sweaty, but he even noticed it just by looking at it. So, these last few episodes have included this sweaty, clammy feeling along with the heat and redness.

Now, here's my dilemna...I went to see the PA today at my doctor's office. I asked if these could just be symptoms of a TOS flare, and she said possibly...but they were also classic signs of CRPS. Now, the thing is, I don't have any real pain in my arm during these episodes. I do have pain in the usual places, my bp area, upper arm aching, shoulder blade stabbing, but I don't have the intense, burning pain all down my arm like I would expect with RSD. I have had a couple of very short bouts of burning pain...sometimes around my elbow, and tonight in the back of my arm. But usually it's just the hot, sweaty, redness, with a bit of swelling possibly. I read somewhere that the arm/hand usually turn cold, but mine is just the opposite. I have also had a couple of episodes of allodynia the last few days in the back of my arm...one time enough to make me go and change what I was wearing to keep it from rubbing on that area.

So here are my questions, for any of you knowledgeable about RSD & TOS:

1. Does this sound to you like it could just be manifestations of a TOS flare?

2. Did your RSD start out intermittently, like this? If so, did it progress to something more constant, and if so, how?

3. Did you have a lot of burning pain immediately, or more of these types of symptoms to start with?

4. If your RSD was diagnosed early, what treatments did or did not help you? Any recommendations for me?

5. If you have allodynia, did you try desensitization in the early stages? Did it help? I had a physical therapist recommend it to me last summer to try to keep the allodynia at bay, as she also felt I was heading into RSD, or at risk for it, anyway. I tried it a bit last summer with a bath brush, then stopped until a few days ago. I thought I'd keep it up on a daily basis for a while.

6. Do exercise, nerve glides, stretching, etc. help you? How did you find a balance between moving and using your arm(s) and keeping it from flaring the TOS...or did you find a balance?

7. Do you have any studies or links you can direct me to? I've done a bit of reading on the RSD board here, and the RSDS organization as well as a few other online sources...just looked at the Mayo Clinic site, which was pretty brief.

The PA started me back on Lyrica again (ugh! Diet time!), and I'm to see Dr. Centeno in three weeks to give him a report on how it's going.

So...sorry to bore you with all this...but would appreciate any answers or advice you can give me.

Thanks, and take care, everyone!

Donna

Edited to add: Never mind about Question 7 above! I found a great thread here on the RSD forum: http://neurotalk.psychcentral.com/sh...ad.php?t=13747 Lots of good links and research studies!

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[flippnout]

http://www.rsdrx.com/rsd_misdiagnosed_as.htm

http://www.rsdrx.com/Differential%20Diagnosis.htm

I hope this can help you Donna7 I know it crazy I feel like it is crazy to me is it the TOS I feel or is it my RSD I know my RSD is spreading and I feel my burning in my fingers. Also talk to your doctor about this he/she will fill you in on this too.

flippnout

[InHisHands]

Originally Posted by Donna7

3. Did you have a lot of burning pain immediately, or more of these types of symptoms to start with?

5. If you have allodynia, did you try desensitization in the early stages? Did it help?

I didn't have the burning pain immediately- just the stabbing/ shooting pain. Burning pain did come on, sure enough, though.

Desensitization in the affected areas has helped me become less sensitive.

HTH!

[Donna7]

Thanks so much, InHisHands...I so appreciate your input!

Take care...hope today is going well for you! BTW, I love your user name...we are In His Hands, aren't we?

Donna

[InHisHands]

Originally Posted by Donna7

Thanks so much, InHisHands...I so appreciate your input!

Take care...hope today is going well for you! BTW, I love your user name...we are In His Hands, aren't we?

Donna

Glad I could help you out! How are you feeling?

Yes!, and my username reminds me of that everytime I see it... it's a good reminder!

[Donna7]

Originally Posted by InHisHands

Glad I could help you out! How are you feeling?

Yes!, and my username reminds me of that everytime I see it... it's a good reminder!

Doing okay today...thanks!