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 05-23-2015, 10:35 PM #1
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Default Lyrica = RELIEF!

So our son started Lyrica about a month ago. We've struggled to find something that didn't have unbearable side effects, and this seems to be it. It's making a huge difference in his pain level and tolerance for weight bearing.

We put a quick-set pool in the backyard (we're all a little burnt out from going to the YMCA 3x/week for the pool), and hooked a solar panel to the pool filter so it's usable already. We live in Michigan and it's still getting in the 40's and 50's at night, but as long as it's sunny and at least in the 70's during the day, the water gets into the 80's and is comfortable enough to swim in. He's improving steadily, he was even able to stand barefoot outside the pool for a few minutes today without pain. That was HUGE.

I do wonder, though, why the discoloration doesn't seem to improve. It still turns purple if he dangles it, stands in place, or it gets cold. Does this just eventually go away? Is it usually treated as a circulation problem?
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Old 05-24-2015, 07:48 AM #2
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I am so, so happy to hear the news! Finally something! Go Matthew! Being able to tolerate a bare foot IS a big deal. It is wonderful you got the pool set up in your yard. That will make recovery more of a social thing too. That wonderful Michigan summer is around the corner.

Is the color improving at all? Does he still have much atrophy or has the muscle mass on his affected leg returned? I still discolor but it has improved over time and seemingly as I have gained muscle mass. Just measured my calf this week and it is finally back to the same size as the other one! Took 10 months of work and I don't think really pumped up till I could walk more consistently. I wouldn't worry too much if muscle mass is taking time to normalize, so long as there is slow steady imrpovement. Does Matthew's leg look normal when he is using it? That sounds like a good sign if so. Darn circulatory symptoms! Those drive me nuts.

Sending hugs, Littlepaw

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Old 05-24-2015, 08:09 AM #3
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Discoloration while the foot is dependent took a long time to subside for me, even as the pain levels improved. In my experience, circulation improved as part of the overall healing process, gradually over the course of many months.

On going barefoot: I stayed barefoot as much as possible to give my foot full proprioception/free movement and am convinced it had a significant positive effect. Even now when I wear shoes, they're all barefoot style (vivobarefoot is a great brand.)

Congrats on the progress
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Old 05-24-2015, 08:36 AM #4
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I second periods of barefoot activity as tolerated. I started out deliberately spending a little barefoot time taking steps in the grass where there is plenty of cushion. It gives all kinds of interesting input for the nerves to recognize, cool damp areas in the shade, warm crackly areas in the sun. Getting those nerves to reorganize with non-painful sensations does make a huge difference.
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Old 05-24-2015, 09:59 AM #5
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Happy dance...it's always wonderful when someone finds relief...even if it's just a little....and even if it's with medication that doesn't work for other....
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Old 05-24-2015, 02:06 PM #6
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This is a great overview of OPC's...I'm headed to my 20th yr taking OPC's...pycnogenol and grape seed extract are my "miracle workers"....I am not using/endorsing this company's product but like their info. MANY vit companies sell OPC's.

www.grapeseedextract.com/
The OPC1 components in GSE are 50 times stronger than Vitamin E and 20 times stronger ... It strengthens blood vessels, improves skin, and aids in circulation.

There are many links, but here is another one on Circulation and Cardio:


www.ncbi.nlm.nih.gov/...
National Center for Biotechnology Information
by MR Cesarone - ‎2008 - ‎Cited by 6 - ‎Related articles
Jul 15, 2008 - Improvement in circulation and in cardiovascular risk factors with a proprietary isotonic bioflavonoid formula OPC-3. Cesarone MR(1), Di Renzo ...



Personally, I never had circulation issues until I had hip replacement in 2010, and left with many complications; one major one, cutaneous femoral nerve damage...going on 5 yrs soon.

My main reason for starting on OPC's in 1995, we were told it MAY prevent cancer....so I jumped on Pycnogenol. Then went to grape seed ex and shortly after on Pyc, a lifetime of allergies/sinus issues cleared up big time....there are MANY benefits to OPC's..
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Old 05-24-2015, 10:54 PM #7
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Most of his foot looks normal while using it, or while it's elevated. I worry a little about the one area that in the beginning, was just a small red circle, smaller than a penny. Now it's more of a purpley, 2" diameter area that kind of stays slightly purple. But the last exrays and CT scans checked out okay, so I guess I won't worry about it as long as he's improving in function.
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Old 05-26-2015, 08:16 AM #8
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Quote:
Originally Posted by swimtime View Post
We put a quick-set pool in the backyard (we're all a little burnt out from going to the YMCA 3x/week for the pool), and hooked a solar panel to the pool filter so it's usable already. We live in Michigan and it's still getting in the 40's and 50's at night, but as long as it's sunny and at least in the 70's during the day, the water gets into the 80's and is comfortable enough to swim in. He's improving steadily, he was even able to stand barefoot outside the pool for a few minutes today without pain. That was HUGE.
I am starting pool therapy next week. Since it is 40 minutes away, I am curious about the solar panel set up you are using. I'm in N. IL so face the same temperature issues and would be interested in being able to 'therapy' at home.
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Old 05-26-2015, 10:18 PM #9
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That's why I posted details about temp, etc. I knew we couldn't be the only ones with this issue, since pool therapy is a really big deal on this forum, and thought it might be useful to someone else.

Basically, the solar panel hooks to the pool's filter pump. Water goes from the pool to the filter, then through the solar panel and back into the pool. Some people install the panels on their roof, but we just laid it on the ground facing south. We had to buy an extra hose to attach the solar panel to the pool inlet valve. The hose doesn't come with the panel, probably because different pools need different size hoses. We also use a solar cover (looks like blue plastic bubble wrap), which holds the heat in. Here is a link to the solar panel we used:

http://www.pooltown.net/Swimming-Poo...olar%20Heaters

It helps that our pool is only about 3,000 gallons (it's a 36" deep pool), so there's not too much water to heat.

It's still worth doing therapy at a pt place so that you get an idea of what exercises to do and how to build on them. Our son did pool therapy for about 6 weeks and we only pulled him out when they moved him back into the gym before he was really ready to tolerate it.

So glad you can start pool therapy, it's the BEST!
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Old 05-27-2015, 12:05 PM #10
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Thank you for sharing that info! I'm really hoping the pool therapy helps!
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