Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 09-17-2013, 12:40 PM #1
st1rn st1rn is offline
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Question Lumbar Sympathetic Blocks

I am new to forums and don't know if I am doing this right, but I have a question?
Has anyone had any experience or know of any studies in the use of LSB to reverse symptoms and prevent spread for CRPS where the pain is minimal or tolerable and the most prevailing symptoms are temperature changes / color changes, mild weakness / stiffness and intermittent cold achyness?
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Old 09-17-2013, 08:26 PM #2
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Hi. Well, in terms of studies, that seems to be a hard one. I also looked for the same information, but didn't find much. Maybe someone here knows, but there is not much research about crps treatment in general, let alone for different presentations of the disease. On top of the fact that there aren't many studies, they are hard to interpret because they have different end-points. Some treatment might be judged "not effective" for improving mobility but it might be pretty good at relieving pain. There was a review from Cochrane that concluded that the is low quality evidence that these blocks are not effective:

O'Connell NE, Wand BM, McAuley J, Marston L, Moseley GL. Interventions for treating pain and disability in adults with complex regional pain syndrome. Cochrane Database of Systematic Reviews 2013, Issue 4. Art. No.: CD009416. DOI: 10.1002/14651858.CD009416.pub2.

That said, here you will find anecdotal evidence that the blocks have helped some members, including myself. I was in a similar situation as you describe. I've had relatively mild crps in my foot for 1.5 years, and it hasn't spread. I wouldn't say my pain was minimal, but it was much less than what a lot of crps patients have. It was *mostly* tolerable but constant and interfered with my life. It was what the doctor called deep somatic pain, with no pain in my skin or from normal touch. I also had coldness and swelling. No weakness or stiffness.

Anyway, I had four lumbar sympathetic blocks earlier this year, about 1 year after the crps started (but right after I was diagnoses, because my symptoms were relatively mild and therefore missed the dx). The doc thought he could put it remission with the blocks, but it didn't. The blocks did help, however. Starting with the first block, I had much less pain when I was resting. I still had a lot of pain while walking, but I was able to sleep better. Also the pain when walking was a little less. After the first one, the other blocks only seemed to be less and less improvement. The doctors ended up deciding to put me on gabapentin, which I guess means remission is a no go for me.

The other members of this forum will tell you everyone is different so my experiance might not be relevant, but I would have the blocks again given what improvement I did get, even if not remission.

Good luck.
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st1rn (09-17-2013)
Old 09-18-2013, 02:59 PM #3
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Quote:
Originally Posted by st1rn View Post
I am new to forums and don't know if I am doing this right, but I have a question?
Has anyone had any experience or know of any studies in the use of LSB to reverse symptoms and prevent spread for CRPS where the pain is minimal or tolerable and the most prevailing symptoms are temperature changes / color changes, mild weakness / stiffness and intermittent cold achyness?
I've heard of it, and had my PM&R talked about it, but from what I was told it only works in the beginning. My PM&R told me a year out that he would not do the injections because they are not a good idea that far into RSD (it had also spread at this point)because they will probably not work, and might actually hurt me.
It might be a different story with each person since everyones pain and spread(if any) is different, but all the doctors I've talked to about it say that it only works within a certian time frame. I know it is also less likely to help after the RSD has spread for some reason. (Hopefully, if you havent had it already, you wont attain a spread, and will have more treatment options available). So, thats my experience with it, hope it helps.
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st1rn (09-18-2013)
Old 09-18-2013, 04:46 PM #4
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Quote:
Originally Posted by MouseE.Ratz View Post
I've heard of it, and had my PM&R talked about it, but from what I was told it only works in the beginning. My PM&R told me a year out that he would not do the injections because they are not a good idea that far into RSD (it had also spread at this point)because they will probably not work, and might actually hurt me.
It might be a different story with each person since everyones pain and spread(if any) is different, but all the doctors I've talked to about it say that it only works within a certian time frame. I know it is also less likely to help after the RSD has spread for some reason. (Hopefully, if you havent had it already, you wont attain a spread, and will have more treatment options available). So, thats my experience with it, hope it helps.
That's what I was told too MouseE.Ratz (love the name ). The blocks might be useful if used pretty sharpish in the timescale, but once you are well into the CRPS, and especially if it's spread, it's not such a good idea. My pain specialist was pretty clear last year that it was way too risky for me (mine had already spread at that point).

The major gripe I have with the system is that I missed the sweet spot for treatment (first 6 months) in a confusion of crap doctoring. It was two months before I was diagnosed. Then I spent the next 4+ months being given different meds and being urged to 'give them a chance'. Once you are involved in 'titration' it takes weeks before you can prove that a drug doesn't work, and weeks very quickly turn into months. I feel especially duped because it takes time to learn about CRPS, and I was still trusting the docs around me for info. No one told me that dishing out amitriptyline like smarties and telling me I had to give them time wasn't actually 'aggressively treating' CRPS...

Sorry, that was a bit off-topic. My pain doc (second and way better than the first lol) has said that she understands my frustration with that, and I have every right to feel that things weren't handled well. Nice, but doesn't change anything! I suppose I'm trying to say that you cant necessarily go by what the docs say, just because they might be right - but they might not be, and in the end it's your body and your life to live afterwards.

I suppose everyone is different, and some treatments work well for some and not others. It all depends on how your CRPS is, and whether you feel that taking the risk of a treatment is worth any potential gain.

I really hope that whatever you decide works out well for you!!

What a waffle that was! Sorry!

Bram.
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Old 09-18-2013, 05:28 PM #5
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Ive had 1 block done and it did help for about 3 days. Then I was back to the everyday pain that nothing worked on. I was just reading an article that went in depth of treatment for crps. Pretty good article too. I can't remember the site now but if you Google crps treatments you will find it. Even had some pics and videos. It was a Drs site more than a patients but I still read it. Very interesting stuff. It took them almost 10 yrs to finally figure out what was wrong with me. I will go back and find the site and post it for you. I hope it helps.
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Old 09-18-2013, 05:33 PM #6
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Here it is http://www.rsdfoundation.org/en/en_c...uidelines.html
I hope it works. I found the info really enlightening because my PM didn't tell me half this stuff.
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Old 03-28-2017, 12:24 AM #7
haywired haywired is offline
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Default Hi st1rn, I have exactly your question..

I know this is an old thread - but i thought i'd write - i don't think i'm allowed yet to message you directly because i haven't been a member of the site long enough. At any rate, i have 6 months now since surgery / start of this icky journey, and am trying to face getting the LSB.. like you, i have weirdly low pain - for which i'm grateful - but have trophic changes, color difference, temp diff. the foot is still more often hot than cold, so i'm hopeful that means the block could still help me. that said, i'm terrified of the complications that come with the block procedure, even if they are very rare/unlikely.

well - would love to hear how your story turned out. if you get this and are able to direct message me perhaps we could compare notes. i haven't found that many others like me who are diagnosed with this, but have less than off the chart pain.

cheers,
haywired.


Quote:
Originally Posted by st1rn View Post
I am new to forums and don't know if I am doing this right, but I have a question?
Has anyone had any experience or know of any studies in the use of LSB to reverse symptoms and prevent spread for CRPS where the pain is minimal or tolerable and the most prevailing symptoms are temperature changes / color changes, mild weakness / stiffness and intermittent cold achyness?
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