Hi Carrie.
Ihave only one question here; How in the world did you manage to get in to see Dr S so very quickly? My understanding is that the waiting list to get in to see him at all are very, very long. It has not been unheard of for a patient to be on the list for close to or even over a year. How did you do it so quickly?

Thanks,
Jose

Carrie,


I just want to discuss a few things you have brought up in your posts and I am wondering if your PM doctor may not treat RSD/CRPS very often. I may be wrong but there are a couple of things he has said which don't seem correct.
He is right in suggesting Stellate Ganglion blocks (I gather that is what he means by cervical blocks) as the fact you are so newly diagnosed these maybe all you need to stop your RSD/CRPS advancing or in fact put it into remission.
I don't understand how he can state that IV Ketamine won't work
It is just about the most bizzare thing I have heard as NOBODY can accurately predict the outcome of a Ketamine Infusion.

I also think that physiotherapy is very much warranted and needed at this early stage of your RSD/CRPS, especially with a PT who has a working knowledge of the disease.
PT isn't just about the excercise, it is to help keep joints mobile and muscles from tightening. It surely is painful but I feel that the result of NOT moving can be equally painful and if you can prepare with analgesia beforehand then it really is beneficial.
I was unfortunate that I did not have early intervention and am now suffering the consequences with contractures, dystonia etc.
Physiotherpists who are knowlegable about RSD/CRPS should also be investigating the use of graded motor and mirror imagery--this has also been found to "trick" the brain into a different way of thinking about the pain.
I know that some people may think that this infers that the 'pain is in your head' but that is not what it means, but it is the brain that receives and registers all pain.

It is fantastic that you have already have had a consultation with Dr S.
His intervention this early is the best possible outcome you could have.
Wishing you heaps of luck
Tayla

great minds think alike...pt mirror box

Hi Carrie,


If your skin is red and warm (maybe like a mild sunburn), you are in the acute stage; the time when everyone agrees RSD can go into remission. The problem is that no one has any idea why people get better during this stage: Except me.

I write a lot about RSD here, mostly saying it is a disorder called ischemia-reperfusion injury (IRI); but I'm not even gonna try to convince you of that right now. I'm only here to tell you that two of the OTC meds that have been suggested here have been shown to be efficacious in clinical research: They are antioxidants and DMSO (an antiinflammatory/antioxidant).

(I will be happy to send you the research abstracts, just click on the "rsd_hbot" link below).

Should you decide to look up some of my previous posts, I need to warn you that I talk about the chronic stage of this disease, NOT the acute stage; and they are completely different. We are all in the chronic stage, and there is no known widely efficacious treatment for chronic RSD (not even ketamine). For us, it is incurable; for you there is still hope.

I hope you'll post more about your symptoms because I know that everyone here wants to learn as much as we can. You have a willing audience that is also willing to give lots of advice; much of it disagreeing with other advice...Vic

Vicc,
You said:-



If your skin is red and warm (maybe like a mild sunburn), you are in the acute stage; the time when everyone agrees RSD can go into remission. The problem is that no one has any idea why people get better during this stage: Except me.

Don't you think that if you believe you hold the key to this disease that it would only be fair to share it with the thousands of scientists who have been working on finding a solution for both prevention and cure of RSD/CRPS for decades??


Tayla

Tayla,

If I could figure out a way to reach those thousands of physicians, I would be doing just that. Since I can't, I'm trying to reach people with RSD.

I try to explain how ischemia can cause every sign and symptom of RSD, and hope someone will see that it is caused by the ischemia in ishcemia reperfusion injury (IRI). I plan a post in the near future that will show why RSD can't be the result of a nerve injury.

I can't save the world, but I like to think I help a few people...Vic

Vicc,

I don't believe anyone implies that RSD comes as the result of 'a nerve injury' except of cause for CRPS type 2.

I believe that RSD/CRPS is usually the result of some initiating event in or to our bodies that sets off an unusual response by our sympathetic/autonomic nervous system .To find what allows some people to succumb to this disease where others don't, would indeed unravel the puzzle of prevention and cure.

Not everyone who has RSD/CRPS has had a reperfusion injury as they have not experienced an ischaemic event which causes IRI. Nor do all people go through the stages of RSD/CRPS that you have suggested in your post to Carrie.
Tayla

Hi Ya Tayla! Your post just made so much sense here!! I for one started getting the Stellate ganglion blocks in the early part of October. My new pain management Doc. who did the one was just so helpful!! The other three done by another PMD did them all wrong. Anyway, when I had the SGB on Oct. the 4th. I was feeling so good for 5 days!! I believe these blocks along with PT is the answer. sure, my RSD flared for a bit, but I was on medication(Pain) to help along with the physical therapy) So, all in all it makes so much sense to go have the block, take your pain meds and get up off that recliner, couch chair and whatever and get those muscles moving, get those limbs moving. I was having a pain free day that turned into 4 more since the SGB Now, I go back into the office, get an I.V. with medication to put me to sleep, have the block, go home, rest, take the pain meds, do some PT and I am doing alright. My next block is Oct. 25th. and I am hoping that this block will help even more than the first. I complained that PT was hurting, flaring my RSD when all all along, Now please keep in mind, that this is me.. I am not talking about anyone else here, but for me, It all is working out towards the good. My PMD is trying to but this beast in the far off back corner by hopefully putting it into remission by blocks, medication and phycical therapy! Now I know what it "FINALLY" means that the eariler caught, the better your out come. I just didn't want to hear anything from no other pain management dr.'s in the beginning. So, here I am going to have my second SGB and I am atually looking forward to having this, meds and PT to help. I believe all three go hand in hand!!
So, as for me.. this is the way I am going!! much love~ Desi

Desi, That's terrific so hope the relief grows.

Auberon

Thank You, Auberon! I feel I am the ONE who has to make this happen if I want to get to feeling better! I have made up my mind to listen to no one, but my own body, pain. Yes, I welcome comments, read, take other peoples advice to heart when need be. what I'm getting across here.. I don't want to go around in circles anymore. I want to remain, stay as positive as I can, with a hope in knowing that this "Beast" can be kicked to the curb for a spell"! LOL Thanks again, Auberon!! ~Love, Desi