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 08-15-2013, 05:27 PM #41
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Hey Bram,

Yes, it is frustrating for sure!! Coping... sometimes it is darn tough.

Regarding anti-inflammatory Celebrex - I actually take it because I fight another disease that causes my body to grow bone in places where it should not grow bone (outside the skeleton in my soft tissue) and like you I suffered horrible stomach problems from all the others except for this one and I've been on it now for almost 2 years. Might be worth a shot.. I know it has helped many arthritic sufferers like us.

Personally.. I think hot tubs or endless spa's should be covered by insurance for anyone who has CRPS or other movement disorders!! It is so beneficial!

Take good care,
Tessa
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Old 08-16-2013, 07:52 AM #42
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Quote:
Originally Posted by Brambledog View Post
Hi Zook. I have arthritis in my knees, but I don't have the bone deep pain in my right knee, which has worse arthritis than the L that has the CRPS. The deep bone pain is not uncommon with CRPS from the reading I've done. I was pretty active before the CRPS and still use a stationary bike and exercise generally as much as I can, but can't use a treadmill as my knee is very unstable. I've tried quite a few different meds, but I can't use anti-inflammatory tabs because they gave me stomach problems after a few months, so I elevate if the swelling builds up, and generally I manage it pretty well I think. It's frustrating trying to keep well and mobile! Can't afford a hot tub, and it would have to be a 'pleasantly-warm tub' anyway, as hot water makes the burning worse! Ah the fun and games.....we all cope as best we can

Bram.
I also have the deep bone ache from RSD. My doctor has me on Tegretol for it. It seems to reduce the intensity of the deep aching.

As far as weather I'm in Michigan in the metro Detroit area. We have every type of hot, humid, cold, rain, snow, ice. For me the cold makes my RSD worse and the humidity makes my RA worse. I lived in Florida (Broward and Palm Beach county area) back in 9 or so years ago for about 1 1/2 years ( prior to my RSD). I lived through 4 hurricanes during the 2 hurricane seasons. Wow they can be nerve racking and scary! I was working for a PD down there and we had mandatory overtime the whole hurricane and I had to be away from my house until it was over. My parents are planning on retiring in Estes Park Colorado. They have a place there. I've been to Colorado numerous times. They are trying to get my sister and I to move out there as well. We both say no way! I've moved across the country once and if I did it again it would be some place hot without snow! I'd only move again if my sister and young nephew wanted to. She likes Arizona and I like Nevada ( Las Vegas).
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Old 08-16-2013, 07:57 AM #43
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I forgot to add....

My checking the guide hoping it would magically appear and be on in my area worked!!! The day of I checked one last time and it was there on the guide! So I was able to see the program. I wish it had been longer and covered more disorders.
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Old 08-16-2013, 08:42 AM #44
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Quote:
Originally Posted by zookester View Post
Regarding anti-inflammatory Celebrex - I actually take it because I fight another disease that causes my body to grow bone in places where it should not grow bone (outside the skeleton in my soft tissue) and like you I suffered horrible stomach problems from all the others except for this one and I've been on it now for almost 2 years. Might be worth a shot.. I know it has helped many arthritic sufferers like us.
Tessa
I looked up Celebrex, and I'm pretty sure it's the anti-inflammatory my doc said wasn't a good fit for me - the serious side-effects include potentially serious risks for those who've had gastric problems with other NSAIDs, and the risk of complications for anyone with cardio-vascular risk factors - all of which I have. Having read the Wiki details, I'm glad he considered it and decided not to. Thanks for the idea though

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

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Old 08-17-2013, 02:54 PM #45
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Love all your posts on this Bram!
I watched the CNN report and loved it. I believe there is so much good to be derived from the plant. Also it is said that no one dies from MJ overuse or overdose. How many people die from RX drugs and alcohol? And opoid addiction is rampant!
I have a list of different strains of MJ and basic chemical makeups and some specifically target nerve pain, even nerve regeneration and blood vessel improvement.

Still, I'm from a generation where we were taught that MJ is just another "bad street type" drug and "potheads" are equated with skid row winos and the stigma is hard to get past.
I could get a medical card where I live, but I'm afraid my P.M. Dr. will no longer treat me if I try that at the same time. So.....
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Old 08-17-2013, 08:39 PM #46
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I have tried it 2 different times and I myself got no relief, felt no different. So for me it didn't work but that's just me, doesn't mean that it won't work for someone else. I think whatever works. If anyone had to go through this pain they would see it differently. Let Kim& Kayne get this damn thing and see how quick things change. That's the thing that irks me its not a cause until a bunch of stars get behind it.
OK I am done B*tching. lol
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Old 08-18-2013, 12:43 AM #47
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It has been really great to read all of the comments on this subject/post. I believe that the more we talk about this, that perhaps some of the taboo will dissipate and we can start looking at this as a real medical benefit for some. Colorado and other states have proven that it is possible. And I believe that ANYTHING is possible. I know I know, I'm the ultimate optimist. lol
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Old 08-18-2013, 04:10 AM #48
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We wouldn't have you any other way, Vrae

chris&rob, I completely agree - Paula Abdul was said to have CRPS, it was in the news....BUT only because she had been acting strangely. She said it was because of all the pain and meds she was taking for it, but the media angle was definitely sceptical and more was viewing her as some crazy nutbag.

Now if someone high-profile and squeaky-clean got this darn thing, and wasn't afraid to go public......ahh, but we dream.....and I wouldn't wish this on anyone!

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
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Old 08-18-2013, 11:27 AM #49
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Hi guys - late to the post, but thought I would chime in on the mmj subject. I am currently transitioning to mmj - and have weaned off almost all of my opiates. I have a unique situation in that I am very good friends with my massage therapist - whose husband runs a dispesery in WA state. Because of this, I have seen and learned about all of the different strains, cannabinoids, concentrates etc.

In response to a couple of comments earlier...I can answer some questions because of how things have progressed in Washington. First, as of now, almost any good dispensery sends out a sample of any product to be sold to a Mass-spec facility called Analytical360. Here the percentages of THC, CBD, CBG, CBN and other cannibinoids are measured - and the info is now often included in product labeling. There are now a large number of plant strains that have increasingly higher levels of CBD, and no detectable THC. Many CDB only concentrates are also being made as well. Anything with high CBD (leaf, concentrates and topicals) are what I use, and has been unbelievably helpful for my allodynia/nerve pain.

As a small side note - CBD modulates THC, and vice versa...meaning in strains with both THC and CBD, CBD dampens the pshycoactive effects of THC, while THC strengthens the pain-relieving effects of the CBD - so my favorite products have as much CBD as I can find, with just a little THC for effect
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