More RSD Questions
 

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 :mad: ...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!

You might post a link to this or copy it and ask on the RSD board too, just to get as much input as possible.

Between the two boards you should get a lot of good help.

Donna these are the exact symptoms that are happening with me. I however have it going on in both arms and in my face. Please pass on to me any info you might find. I would appreciate it.

Thanks, Jo, I think I will do that. Trix, I'll let you know if I find out anything helpful!

Take care,
Donna

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

this link I think will help....
flippnout:rolleyes:

great link! Thats really the first place i've read about shoulder injuries and surgeries linked with TOS and RSD, which I think is especially pertinent in my case.

Hi Their,
If i was you, I would get to a very, very good Doc.. I would not walk if I could run. Hugs, Roz

Hi...thank you all. I do have a good doc, who I will be seeing in three weeks. I appreciate your help!

Take care...

Donna

I just noticed that page on Hooshmands site hasn't been updated since 2002 - the different sections have been updated at other times though.
Did you look at the photos?

foods page- http://www.rsdrx.com/four_f's_diet.htm

you could spend a whole day reading the site sections.

Hi Jo...yes, I did some exploring last night on that site, and a bit today. You're right...those "puzzles" have a LOT of info! Haven't checked out the photos there, but I did find some on another site.

Some of his stuff was confusing, though...one of his symptoms was the cold limb, plus he added as dx criteria the agitation/depression/irritability, which is not really an issue for me. I sleep fine (unless I'm in a lot of pain), and don't really have what he calls "limbic" symptoms, and my arm is hot rather than cold. He did make a distinction in the causalgia section about that, tho...

The RSDS site has a fantastic index of medical articles and research, for anyone who's interested...Here's a link to it:

http://www.rsds.org/2/library/articl...ive/index.html

I'm trying to find another good article I read...can't remember what it was titled or where I found it :mad:

Thanks, again!

Hi Donna,
What kind of Doc are you seeing? Also I believe in more opinions than one. I mean well believe me. Hugs, Roz

Hi, Roz...I see Dr. Centeno, here in Denver, for pain management. He's done everything he can for me, short of myobloc, which I am considering. I've also seen Dr. Sanders (I live near Denver), along with a top neurosurgeon, top ortho surgeon, a couple of other PM&R docs, and then a few other docs thrown in :) The TOS dx is universal with all the docs; I've never shown any signs of vascular involvement, though, so I'm not considering surgery right now, as I do fear RSD...I also have other complicating factors with clavicular instability, which contributes to the TOS, and I don't think a scalenectomy is really a good answer for me.

Dr. Centeno is really good, though, and very knowledgeable about TOS. He's been watching for RSD for a couple of years now, and I'm sure he'll have something to say about it.

I have felt better today; maybe the Lyrica is helping...or just having a better day???

I know you mean well, thank you so much for caring!

Hey DONNA,

Have you had a Inner Scalene Brachial Plexus Block?

Have you had a SGB?

My hope for you is that you do not have the daily double.

If you are considering surgery RSD needs to be ruled out 100%. Hugs, Roz

Hi again, Roz...yes, I had an interscalene bp block, and it was the ONLY block I've ever had that really helped with pain, even though it was only a few hours. No SGB yet, although the PA mentioned it yesterday, and in some of the research articles I read it seems to be most effective in the early stages, so if Dr. C. wants to do one I'll probably go ahead with it.

I'm not considering any surgery right now, although Dr. Sanders would do it if I asked him. The RSD thing is too scary to me, though...I agree with you!

Ugh! Went and folded some laundry...now my "good day" isn't so good anymore...a little burning around elbow and back of arm...:mad:

Hugs to you, too! :hug:

Donna - where is your elbow/back of the arm pain? is it on the "outside" (i think thats the ulnar nerve side)? If so, i HATE that pain.

Hi Dabbo,
I think the Ulnar Nerve runs down the inside of the arm. The Nurse Practisioner at my last post op visit told me the sensativity that I was experiancing on the inside of my arm was most likley from the Ulnar nerve waking up she said that is where it runs down the arm.. I describe it as if you place your palm up it would be the inside of the arm from the axilla to the elbow. I see my surgion today so I will double check with him and get back to you on it. I am still having that ugly feeling in the same area.
Hugs :hug:
Dawn

Yes, Dawn, that's where I get some burning and pain, exactly, and around the outside of the elbow. That would correspond with the outer part of the hand (ring and pinky fingers), wouldn't it? Of course, that's actually the "inner" part of the hand anatomically speaking, as the palm is supposed to face forward. Man, I was an RN...I had all this memorized in nursing school! I've forgotten so much! This isn't my biggest problem, though...just something I've been noticing lately. The majority of my pain is in the bp area and shoulder blade...but numbness is worst in ring, pinky, and that side of forearm.

I was interested to find out from the PA on Monday that some of the facial numbness and twitching could be coming from problems with the sternocleidomastoid muscle...that makes perfect sense, as that attaches to the sternum and clavicle, which is where I have some instability. It must be the SCM trying to brace the clavicle, which must put pressure on facial nerves...

It is like a puzzle, this body of ours! I wish all the pieces fit together again like they used to, though...:(

I hope you can find some answers at the surgeon's office today, and not the answers nobody wants to hear!

Interesting point (again!) Dawn and donna! I always have trouble decsribing where the pain is (inside or outside). Mine is on the anatomical palm-up inside, which of course i refer to as the "outside" :D Aside from the associated pain, writing and typing are tough, and I think i've lost some dexterity in those 2 particular fingers. I too have some neck pain, and my face feels "funny." Kinda numb/tingly sometimes, and it'll start to hurt on occasion. I'll have to ask my doc about that when i see him next. thanks again!