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 09-20-2015, 05:45 PM #21
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My life has not returned to normal. I just have gotten good at preventing spread. I think it's worthwhile to see how you respond to blocks. My posts are often about SS. You could search satellite ganglion block or sgb to find my posts I would think.

The downside is they can cause spread. My last one I had a weird reaction that seemed like potential spread in my neck.

I encourage you to have a massage within a few days if you do have one.

Sorry for the brevity, not having a good day. You can always pm me with questions.
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Old 09-20-2015, 08:16 PM #22
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Stellate. Ganglion. Block.

Sorry, darn autocorrect.
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Old 09-20-2015, 10:04 PM #23
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Quote:
Originally Posted by PurpleFoot721 View Post

Let me ask this - What's the worst that could happen? Somebody please answer that.
I was to have a series of 3 or 4 lumbar sympathetic blocks to determine whether I was a candidate for a spinal cord stimulator. My 1st block made my foot hurt worse, and made it feel swollen to the point of bursting all day long. Thank God it went away the 2nd day, but no further blocks were tried.
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Old 09-21-2015, 11:58 AM #24
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Originally Posted by LIT LOVE View Post
The downside is they can cause spread. My last one I had a weird reaction that seemed like potential spread in my neck.
This is what I love about our experiences. This monster makes us take risks and yet others prefer another route. But we share what has worked.
Lit Lov I wish you only the very best and thank so much for your posts.
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Old 09-21-2015, 12:33 PM #25
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Quote:
Originally Posted by PurpleFoot721 View Post
Thank you everybody who has posted so far on this thread, and in advance for those who intend to post.

Lit Love, I was hoping you would chime in here. Since Littlepaw mentioned your positive response to blocks, I spent several hours yesterday trying to look through your posts and replies to others to find how they have helped you. With such an overwhelming number of posts I was unable to find anything other than your response to Ketamine and HBOT, neither of which have been brought up yet with any of my doctors. I'm glad that you have been successful at regaining your life back, for the most part. It's always nice to hear others success stories.

I have always been good at meditation. I have used this quite often to block out noise, pain, fear, nerves and many other negative issues many times throughout my life. I have never heard of the RSD diet other than the recommendations of Dr. Hooshmand talking about the 4 f's. When my dad was misdiagnosed with having MS years ago, I learned the importance of a healthy diet when you have a condition relating to the CNS. I continue to eat a fairly healthy diet, by no means Paleolithic, but being somebody who loves to cook, I have always done my best to use only fresh ingredients, fresh fruits, vegetables, herbs, and meats, (usually chicken breast, fish and pork on occasion). I tend to stay away from processed foods, but sometimes find them convenient when time is limited or I am not feeling well and rarely do I use dairy. My husband, who has been doing most of the cooking lately does the same. I have been drinking 1-2 glasses of fresh squeezed orange juice daily but I know I could use more vitamin c. I understand that it does wonders for us.

Since I am rambling and getting off topic, I will get back to the purpose of this thread...

I am glad that the blocks do help some people and as I have mentioned earlier on in this thread, I am starting to think that they may be worth a try. At least to attempt to recover my leg strength and get off of the crutches. I know that they wont do anything for the other areas that have been affected by this, only the original limb.

Let me ask this - What's the worst that could happen? Somebody please answer that. I really do have no idea and can't seem to find any answers to that. I have no known allergies, but I have been prone to having issues with bleeding following surgical procedures though. With the last two surgeries, one I nearly bled to death in the hospital when a couple of stitches let loose late at night leaving me very anemic even 2 months post surgery. The most recent I bled enough that they had to change the splint before releasing me. The surgeon put on a compression splint to stop the bleeding, which in my opinion is why I ended up on this forum. This is the reason why I would like to know the possible complications that result from having a LSB done. I seem to be a fairly unlucky person when it comes to any type of procedure being done. I would also like to hear the results of others who have had a block done to know if they work or not.
I am one of the unlucky few who experienced spread after a block. I knew it was a risk but my dr talked me into taking the chance. On the one hand I wish I had not given in because I went from having RSD in my left ankle to having it almost full body after theblock. But I knew the risk going in and was willing to accept that things could get worse. I also know now that even minimally invasive procedures can cause spread for me so I need to stay away from them. A learning experience...but life goes on. The blocks won't kill you and honestly the chance of spread is small.
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Old 09-21-2015, 01:00 PM #26
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Quote:
Originally Posted by catra121 View Post
I am one of the unlucky few who experienced spread after a block. I knew it was a risk but my dr talked me into taking the chance.
Aww interesting because my doctor gave me the option but said I wasn't a good candidate. He said that the block was risky where the shot would be given and that it would work for only eight hours and in that time slot I would have to exercise like crazy...only fo have the pain come back with a vengeance.
He did warn against astrophy and said for me not to try and give into non movements of arm and leg.
But the monster has spread and ldn helps minimum.
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Old 09-21-2015, 04:01 PM #27
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It's the short lived part about blocks that worries me. I know I have read that they are short lived somewhere else as well. I realize that everyone responds differently to these treatments but if all I can get out of it is a few hours, than is it worth taking the chance of a spread? Form what I have heard so far, I am still unsure of the effectiveness of the blocks. Guess I can get the opinion of my other PM doctors. I see one on the 29th of this month and another on the 13th of October. I will see what they have to say as well.
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Old 09-21-2015, 04:11 PM #28
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Yeah spreading CRPS is no piece of cake....(sugar withdrawal, sorry), but purple please keep us updated with you choices and journey...
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Old 09-21-2015, 04:36 PM #29
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I most certainly will. I just uploaded a picture showing the difference of coloration of my legs in the photos thread as well as on my personal page if anyone is interested.
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Old 09-21-2015, 08:54 PM #30
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Hi Purplefoot,

I am hoping one day that will just be a strange nickname.

I looked at your photos and my first thought was "gosh that foot needs oxygen!". To me, purple discoloration is a sign of oxygen depleted stagnant blood and O2 starved tissues. My own foot had deep purple at one point. The things that made it look better were elevation, exercise (when I would ride the stationary bike the color would go normal for the time it was moving), swimming or even just doing scissor legs in cool water, very light compression and massage. Granted it went back purple quickly but I always felt the overall picture benefited from blood moving. It brings healing to the area and removes toxins and over expressed inflammatory factors. I know not all of these things may be tolerable right now but wondered if there is any time that the color looks better? If so pursue those things as much as you can. Oh I also found if I used kiniseotape the skin underneath looked normal when I pulled it off. It lifts the skin just slightly which can help with lymphatic drainage.

You might also consider using a jacuzzi tub if you have one or know someone who does that would let you use it. You could try a foot bath that moves the water. I actually saw a study that was specifically on the use of jacuzzi for acute CRPS and people had improvement. You could play around with temperature and find what is helpful.

Anyway, just some thoughts. I hope you have a restful night.
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