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 07-16-2013, 02:27 PM #1
Brambledog Brambledog is offline
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Lightbulb Scilly Islands as a CRPS solution....?!

As some of you may know I went away last week.... to the Scilly Isles, 28 miles off the Cornish coast. I was pretty nervous about the travelling, the heat, walking, controlling pain, expectation, sea, sand, food the whole CRPS nine yards of things that could cause problems.

In the end it was idyllic. The weather was beautiful - warm but not stifling (not like now) at about 22-24*C. The boat journey was steady and calming, our boat transfers were easy, and everything was humped about for us, so no luggage concerns. We had a golf buggy to use so that I didn't have to walk too far, our cottage was beautiful inside, and right on the most magical sea view outside. I could wake every morning and look at the sea from our bed .

The island had no wi-fi, very patchy mobile reception, no cars (a tractor and some golf buggies only), has a very clear atmosphere with very little pollution (had to be really careful of sunburn), and is surrounded by shallow, crystal-clear, calm seas.

We had taken every precaution in case my CRPS played up, but it just got better and better. Nice but odd. I paddled in the sea (pretty cool), crunched barefoot in the sand, swam in the pools (one cool, one warmer). We had hired a rowing boat, and I rowed several times with bare hands on wooden oars with no heat or pain. On the second to last day we went to Tresco Abbey Gardens, world famous for the amazing tropical trees and plants - it was an amazing place, and the weird thing was that by then I didn't even consider asking for a buggy. Unheard of for the last two years. I walked for about two hours, with regular sit downs and not going mad. I climbed the Neptune steps - a huge flight of stone steps going right up the gardens. I felt pretty good. Afterwards I didn't have the usual kick-back that normally happens of an evening when I've overdone it.

Now I'm back home I can feel it all coming back. I've been trying to keep up my activity level, convinced I'd cracked the formula but I just can't do it - my knee hurts a lot more again, my feet are burning if I'm up for too long....just like before. I wouldn't say I was pain-free on Scilly, but my pain was greatly reduced, and I was able to do a lot more. My burning reduced drastically, and my hands and left arm (more recent additions to the CRPS party) were fine. My swelling in my knee went down a lot, even though i was walking more and more, but I didn't elevate as I usually do. My feet didn't burn up in the late afternoon like usual. It feels like it was magic, and of course now I have the holiday blues times about a hundred!

So I'd be interested in your theories please

Was it the holiday vibe, relaxation, not stressing at home etc?
Was it the pleasantly mild temperature and cool sea-breeze?
Was it the lack of cars, wi-fi, computers, etc?
Was it the combination of all these things?!
How do I find it again?

I'm just finding the differences bizarre right now. A small improvement from a lovely calm holiday I was hoping for, but that was....fantastically weird. Needless to say, I didn't want to leave, and I want to live there!

Bram.
__________________
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 07-16-2013, 04:00 PM #2
Jimking Jimking is offline
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Stress, clear and simple. The water is where my wife and I will soon move to. We just sold our house of many years and the stress will fall even more for the both of us. The simple life.
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Old 07-16-2013, 05:03 PM #3
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Sign me up for the S(c)illy cure!

It sounds like you had a fantastic holiday. I so happy for you that you got a break from the worst of your CRPS.

If I had to guess, I would say the reduction in stress was a major factor.
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Old 07-16-2013, 07:01 PM #4
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Quote:
Originally Posted by Jimking View Post
Stress, clear and simple. The water is where my wife and I will soon move to. We just sold our house of many years and the stress will fall even more for the both of us. The simple life.
I did the same thing as Jimking. I moved out of the Twin Cities (after 23 years) and up to my lake place in central MN. Tore down my seasonal cabin and built a year round house.

Stress is absolutely positively a factor with CRPS. My stress level dropped dramatically after the move. Instead of bumper to bumper traffic and the stress of corporate life, I now look out every day over beautiful blue water and loons!

And my CRPS thanks me for making this move. Every single day.
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Old 07-17-2013, 02:03 AM #5
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I can just see the Ministers face if I ask him for the DOH to pay to move us all to the Scilly's.
Glad you had a good time. I couldn't even make the journey there even if we could afford it.
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Old 07-17-2013, 03:07 AM #6
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Thanks everyone, that's very interesting...problem is, we can't afford to move, definitely not by the sea or any water! My family has a big Naval history up to my great-grandparents, and I've always felt the pull to the ocean. When we are by any sea, I just sit and look at it for hours quite happily. It's mesmerizing. Problem is that EVERYONE wants to live by the sea, so it costs a bomb...

The Scillys are NOT cheap, and not something we could even think about normally, but our eldest had just finished her GCSEs and it was our first (and last) chance for a proper holiday together as a family, and our in-laws kindly gave us a hefty chunk towards it, so we went for it. Financially things aren't good anyway, so we've just made it a bit worse!

I'm not sure what to do about the stress factor. I try to be cheerful and active, I work as much as I can to help out financially, but we do struggle and I can't fix that. I worry about money all the time in the background; children are so expensive and saying no all the time gets me down a bit. There's all the other little stresses as well with relationships, etc. Suppose I'll just have to step up to the meditation mark again and try to zone out more!

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 07-18-2013, 01:46 AM #7
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Default I’ll be your new neighbor on the islands

Quote:
Originally Posted by Brambledog View Post
So I'd be interested in your theories please

Was it the holiday vibe, relaxation, not stressing at home etc?
Was it the pleasantly mild temperature and cool sea-breeze?
Was it the lack of cars, wi-fi, computers, etc?
Was it the combination of all these things?!
How do I find it again?

I'm just finding the differences bizarre right now. A small improvement from a lovely calm holiday I was hoping for, but that was....fantastically weird. Needless to say, I didn't want to leave, and I want to live there!

Bram.
Oh Bram, you crack me up! Yes, I am too trying to learn the Art of Zen without having to be on vacation to get there. The day to day grind of still working, raising children, relationships, all things CRPS AND I’m to keep my stress levels and emotions in check at all times? You bet, no problem (not).

So yes, a well-deserved break from reality is what we all need and those of us with this damn condition need it more than most. I am happy for you that you were able to escape and enjoy! And who’s to say that it will be your last as a family? Perhaps something wildly crazy will happen that it is the first of many. Until then maybe you will be able to recreate something that will allow you to exhale in a similar way. My husband and I have been lucky enough to run off to the ocean several times, with and without the children. Living in Denver we’re pretty landlocked. But I get the same feeling of being in front of an ocean as I do when at the foot of one of the largest mountain ranges on earth. It helps me know my place in the universe. How very small I really am, and how surely there is something bigger and greater in the universe than me, you, or anyone else. I am fortunate to live in an area that an escape is only about an hour away. And every single time I am able to escape to the mountains or to the beach I do the same thing… exhale!

I read something recently (I can’t remember where) that stated that those who are in chronic pain who expose themselves to nature, that it helps in reducing their pain levels. When we’ve had too much of everyday life, me or my husband will say; let’s get to the mountains and hug a tree Even if I can’t get out and walk much, just to see the hues of green, and mountain ranges sets my soul free, and in return my pain levels are usually greatly reduced. I also always get inspired to do something creative.

Anyway, all this to say maybe you just enjoyed a much needed break and were able to exhale and consequently reduced your pain. However, if there is some other explanation, one which is proven that Scilly holds a cure for CRPS that I can sell to my husband, I’ll be your new neighbor on the islands.
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Old 07-18-2013, 02:52 AM #8
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LOL Vrae.....

It's so true isn't it - there's just something about those great big displays of nature that soothe the soul and are the ultimate 'distraction technique'.

I've been trying to be chilled and calm and zen-like......but life keeps tapping me on the shoulder and coming up with those little bumps in the road!

I suppose the sad truth is that a holiday is not just geographical, it is mental - you escape not just your home, but all the worries that usually dog you. Money worries, family issues, the future, the past, the things you wish were different, the things you are frightened will change. And the only reason you can put them aside for a while is that it is a temporary HOLIDAY! If we moved to the most beautiful place on Earth right now, the view would be fantastic and we might be able to do some things differently, but we would still take those worries with us and still not quite be able to afford what we need...plus my husband would have to find another job I'm still convinced it would help tho....

What we need guys is to win the damn lottery!

Bram
__________________
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 07-20-2013, 08:05 PM #9
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BD,
I spent lots of time in the Caribbean and especially enjoyed the FLA Keys, along with Antigua, Monseratt, Jamaica (negril) the naked beach is so wonderfully freeing, don't matter how good you look or not. There were very fat, and some very ill folks, in wheelchairs, all necked, some ladies who've had radical mastectomies! No Judgement!

Yes your assumptions are all correct!
Leaving the stress behind, (it'll wait), and getting back to nature, the palms, and boat drinks.

I recommend you connect to iTunes, or wherever you buy your music, and get Some Jimmy Buffet music!
The four disc set, is great, then, go forward from there!
It'll take you on vacation daily!

Also, before you go on vacation next time, talk to your doctor of course, but I took scuba lessons and got certified for open water. I swore I wouldn't be able to move for two days, but, I got up the next morning and went for more! No additional meds! The oxygen permeates into your muscles so deeply, and it's such a wonderful pain reliever! I couldn't believe it! My son also got certified, and my daughter (very young at the time ) snorkled around with the barracuda at the surface ( I panicked, and motioned to my teacher), she went up and got between them... the cuda was as big as my little one, even with her fins on! She didn't even know.
All is well, and I was so happy, to have this great adventure with my children, quite a few times!
SCUBA! (Self Contained Underwater Breathing Apparatus)! Go for it!

Be well my friend.....


pete


asb

Last edited by AintSoBad; 07-20-2013 at 10:41 PM.
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Old 07-21-2013, 05:12 AM #10
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That's interesting ASB, I suppose the scuba is an oxygen thing at pressure (underwater) - a bit like the barometric oxygen treatment thing you can get that is supposed to be good for CRPS.

Definitely an idea!! Shame I don't live on the coast....maybe I will enquire at my local pool, they might do lessons.

Bram. (love the BD lol )
__________________
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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