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 09-30-2013, 09:29 PM #21
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LOL - "iHugs" I call them "virtual hugs" on another board, but I think I like iHugs better

I pretty much agree with everything here - music, family, animals, tv, and lidoderm patches when I get really focused pain in a small area. I guess, as I think about it, I would summarize it as "love and beauty" things...

Here's something that I don't think I saw yet - flowers. Since I moved from California to Arizona (a place I've always hated, unfortunately, but it couldn't be helped), I've discovered that I need flowers. They just comfort me with their beauty. Also, an ocean "sleep sound" is really helpful to me at night. And it can't be just ANY ocean sound - I looked and looked for the right one - it had to not have too much of a change in volume, or it would jerk me awake just when I was nodding off with a WHOOSH of the waves coming in. I like the "Naturespace" app, and the "Cumulous Aquae" ocean sound - ONLY that one. The other ocean sounds are just too disruptive. It gently rocks me to sleep, and when I can't sleep, it still soothes me and reminds me of the home I love.

I miss my dog SO much We had such a wonderful dog - a big, lovely mutt we picked up wandering around the streets and had for 14 years. He passed away just a few months ago ... we decided it was time for him to be out of his pain, and took him to the vet's, and I laid down on the floor with him and cuddled with him as I had so often on my bad pain days, and he passed away in my arms, next to my heart. My husband is more concerned about not looking weird and didn't want me to lay down on the floor at the vet's, but I didn't care - I wanted his last memories to be comfortable and loving, so I did it. God, I miss him so much ... dogs are so special.

Music is also very important to me. I play the harp, when I can. It's really a lovely instrument; I love how you embrace it and hold it next to your heart as you play and feel the music in your body.

A good movie or tv show is a wonderful distraction, as are books late at night when I can't sleep. And family is such a blessing, although since we moved here, we're having so many family issues, sadly. The kids and I get along great, but we moved very close to a lot of my husband's family, and unfortunately ... well, it's usually not so good to move really close to either family, and it's really hurt our family I just found a good counselor, though, and started seeing her last week. My daughter wants to see her, too, so we'll start her up this week.

Anyway, good thread! and interesting that we have similar things that help.
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Old 09-30-2013, 11:26 PM #22
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LOL - "iHugs" I call them "virtual hugs" on another board, but I think I like iHugs better


Here's something that I don't think I saw yet - flowers. Since I moved from California to Arizona (a place I've always hated, unfortunately, but it couldn't be helped), I've discovered that I need flowers. They just comfort me with their beauty. Also, an ocean "sleep sound" is really helpful to me at night.

Anyway, good thread! and interesting that we have similar things that help.
Thank you SloRan!! lol.. I had forgotten how much flowers mean to me also. My sweet husband started bringing home a bunch or two when he goes grocery shopping at Trader Joe's (FYI for anyone who doesn't know this.. TJ's has beautiful bunches for $3.99) and I really have gotten spoiled by this They do brighten my spirits!!

Great idea on the Ocean sounds - I hadn't even thought of that! I will give it a try.

Sorry about your dog, I can't imagine how painful that must have been but, I am so glad you were able to comfort him!

The Harp.. wow we have a musical group here! I have always love the beauty of harpist it does look very calming and the sound.. just magical.

Family.. we love how annoying they can be at times! I do hope those dynamics work themselves out.

When you used your Lidoderm patches did you place them on the nerve root above the affected site? At least for me they worked much better when I found the nerve root or the location of the nerve path closest to the surface of the skin for better absorption (always higher up the nerve path so the meds flow down the nerve path). But, as with everything else it doesn't always work for everyone. I also use medicated compound cream in the 12 hours that the patches aren't on and I do think the combo makes them both more effective.

I do hope the counseling is positive for both you and your daughter, let us know how it goes if you don't mind sharing.

Have a terrific evening and thanks for joining in on the conversation
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Old 09-30-2013, 11:32 PM #23
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Default One of my magical escapes from CRPS pain

Nature The most awesome way to escape pain for a little while!

This is me and my very sweet, sweet husband enjoying the Pacific Northwest and each other.
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Old 10-01-2013, 02:09 AM #24
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I use heat packs frequently. They do help with the pain a bit. My husband is terrific at spotting when I need one. He often gets one for me before I've even thought of it myself. Warm baths and light massage also help me.

I find it also helps me to focus on physiotherapy. It doesn't decrease the pain but I can see slow improvement in function and that keeps me feeling positive. It is still early days for me.

Reading helps, of course, but I now find it difficult to manage the kindle on the bus and train; they are always crowded and I don't always get a seat. So, I like to listen to podcasts when commuting. I take the bus and train to/from work which, as I'm sure you all can imagine, is a bit challenging. All the movement is unpleasant and, since I am in London, I am constantly trying not to get bumped while I'm traveling. The podcasts really help to take my mind off the pain.

My dog is a great comfort to me. She is so sweet and funny and beyond adorable. She loves to curl up next to me and take a nap. There is just no therapy like her furry, warm little body next to me, snoring softly. She is also really careful when I use my CRPSy hand to stroke her. That is favourite physiotherapy.
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Old 10-01-2013, 03:09 AM #25
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Music is also very important to me. I play the harp, when I can. It's really a lovely instrument; I love how you embrace it and hold it next to your heart as you play and feel the music in your body.
That's exactly how I feel about my cello SloRian - and why it had to have a name and be a 'he' I love the initial almost hug as I position Edward in my arms....awww bless him, he is lovely

Reading....yes, I have literally just started reading a series of books that always bring my pain down quite a lot when I read them. Two series of five books - ten in total, so I'll be zoning out for at least a couple of weeks!! They are the David Eddings books, first series 'The Belgariad' and second 'The Mallorean' - the first book is called 'Pawn of Phrophecy' and that's the one I've started. It's a fantasy series, but so well written and rich with fantastic characters, I can be lost in these books and love every minute. I also love Rosamunde Pilcher's novels, they are a little old-fashioned but like a cosy blanket, and just make me feel good.

Literature and music - where would we be without the arts?!

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 10-03-2013, 06:49 PM #26
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Thank you SloRan!! lol.. I had forgotten how much flowers mean to me also. My sweet husband started bringing home a bunch or two when he goes grocery shopping at Trader Joe's (FYI for anyone who doesn't know this.. TJ's has beautiful bunches for $3.99) and I really have gotten spoiled by this They do brighten my spirits!!
Yes, TJ's is da BEST place to get flowers!!! So inexpensive, I can't believe it! When it's daffodil season - WOW! So cheap, and so cheerful. Ditto with sunflower season. And I'm stuck in Arizona and can't grow flowers myself, like I could in California, where I had a whole WALL of pink and red roses ...

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Great idea on the Ocean sounds - I hadn't even thought of that! I will give it a try.
I highly recommend that particular track. But try several, because you might respond differently. There are some that just send me up the wall, but this one really soothes me.

Quote:
When you used your Lidoderm patches did you place them on the nerve root above the affected site? At least for me they worked much better when I found the nerve root or the location of the nerve path closest to the surface of the skin for better absorption (always higher up the nerve path so the meds flow down the nerve path). But, as with everything else it doesn't always work for everyone. I also use medicated compound cream in the 12 hours that the patches aren't on and I do think the combo makes them both more effective.
I'm a little different than most people here. I've been in remission for 6 years now. I definitely had RSD; it was confirmed by several doctors and I had all the signs. It started with torn tendons in my left foot, then I got surgery, then it was healing, then one day, that awful "why is it hurting so much all of a sudden?" My foot was horribly discolored, cold, shiny skin, less hair growth on the leg, all the signs. Plus the horrible, horrible pain - trying to take a shower while not letting a single drop hit your foot, or not wearing jeans because the hem would brush against your foot and feel like a chainsaw.

One time I was putting on my makeup at the bathroom sink and for some reason there was a penny on the counter, and it fell off onto my foot ... I collapsed on the floor in agony, curled up in the fetal position for a good 5 to 10 minutes. I know RSD - but mine never spread, and it went into spontaneous remission when I tore my shoulder ligaments and had shoulder surgery. The foot just went back to normal. I was going to get a spinal block for the RSD, but then the doctor retired, and before I found another, I tore my shoulder, and then the foot just snapped back to normal.

However, I deal with the RSD monster with my daughter, who got a stress fracture in her foot, which started healing normally, and then one day ... And she went through 4 spinal blocks, and 6 Bier blocks, and was scheduled for a SCS implant surgery when we heard about Calmare and gave it a try and it worked with her and she went into remission.

I also deal with another monster with me - CFS (chronic fatigue syndrome) and Fibro. CFS is horrible, too, but the pain isn't anywhere close to RSD. But the fatigue is much, much worse, and like RSD, it's an invisible disease. And people may not understand RSD, but they LAUGH at CFS. "I'm tired after a long day, too!" they say, laughing. They don't understand - on the BEST days, I have trouble even walking around the block - it's like a Himalayan expedition. On the bad days, I stumble around and walk into walls; that is, when I can even make it out of bed. I've had this monster for 30 years now. And I used to be so strong and athletic Now when we go camping, instead of going on hikes, I send them all away with a cheery wave - "Have fun! Say hi to the waterfalls for me!" and I go back in the trailer and sleep so I can be at least somewhat coherent by the time they get back.

And when you're with a group of new people and they want to walk somewhere - "I'm sorry, but I have a health problem and I can't walk far; you guys go ahead, and I'll just sit here and wait for you to come back." The stares, the looks over their shoulders as they walk away. Or the field trips - everywhere you go, you look desperately for the chairs, for the ledges to lean on. And then once we were in a room with nothing - NOTHING - and I finally had to just sit on the floor in the middle of a tour group with all the parents and the kids stealing glances at me, as I tried to smile and whisper to those around me "I'm sorry, but I have a health problem and it's either sit down or faint!" That, of course, on the few field trips that I was even able to go on; most of them I had to turn down right away because they were too long.

I have a good deal of pain - I'm typically at a 4 or 5. It's nothing like RSD, though, and my heart goes out to you all. But I know RSD, and I deal with it with my daughter, and I just feel that this board is where I fit best, because I want to stay up with the trends and I have a lot in common with you all, and a lot of the same issues. So for me, as far as Lidoderm, I just put the Lidoderm patch on when I happen to have a very localized pain spot, which doesn't happen very often. But when it does, the patch is a godsend.
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Old 10-03-2013, 06:53 PM #27
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That's exactly how I feel about my cello SloRian - and why it had to have a name and be a 'he' I love the initial almost hug as I position Edward in my arms....awww bless him, he is lovely
Aww, that is SO cute!! I just love the cello; it has such a beautiful, rich sound.

I love how my harp just nestles on my shoulder ... I'll have to see if I can think of a good name.

Quote:
Reading....yes, I have literally just started reading a series of books that always bring my pain down quite a lot when I read them. Two series of five books - ten in total, so I'll be zoning out for at least a couple of weeks!! They are the David Eddings books, first series 'The Belgariad' and second 'The Mallorean' - the first book is called 'Pawn of Phrophecy' and that's the one I've started. It's a fantasy series, but so well written and rich with fantastic characters, I can be lost in these books and love every minute. I also love Rosamunde Pilcher's novels, they are a little old-fashioned but like a cosy blanket, and just make me feel good.

Literature and music - where would we be without the arts?!

Bram.
I'm an avid reader - I just love it! I love the classics, and I'm a big Tolkien fan (my avatar uses his Elvish characters) and I'm branching out to literature from other countries (the Russian classics are great) but my go-to for when the pain is worse is Agatha Christie - she's just so fun, and so wickedly and hilariously accurate with how people act Just fun, light, distracting reading. I can't manage anything else when I'm feeling worse than normal.

Anyone a Dr. Who fan? I'm looking forward to the new Doctor; I just didn't really click with Matt Smith (although how can anyone follow David Tennant?), although I like Clara. Wasn't wild about Amy.
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