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 08-19-2007, 12:00 PM #1
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Hi Daniella,

I got my rsd in San Diego, Ca.. I next moved to the Phoenix, Az. area. Then on to Arkansas, back to San Diego & mexico, up to Idaho, and I am now in Spokane, Wa. Whew! Long list, I move a lot. Plus I've had rsd for 14 years.

I have determined, in my experience, that each area has different troubles that cause about the same amount of pain, I'm afraid.

San Diego is much warmer, but near the beach it is cold and moist. The desert areas of Ca. and Az are hot as heck during the day, but freezing cold at night, even in the summer quite a bit. The shifts each 12 hours were murder on me. Arkansas was extremely hot and humid, which made me ache horribly. It also had a bit of snow in the winter, so I didn't escape the cold there, either. Idaho's snowy winters were hard, but the moderate to hot temps in the summer were great, plus the state is beautiful. Eastern Wa. has wonderful moderate summers, very few 100 degree days, and a lot of 80's. The winters are a mix of light snow and rain, very little snow accumulates on the ground.

I think I'd say here in Spokane is the best place, but at the same time my rsd has gotten so much worse these past few years that my ankles and knees are freezing even in 100 degree weather .

I would recommend you stay wherever you have the best support system. That is such a vital part of this disease. Without it, I wouldn't have made it this long.

I only have Michael, no friends or blood relatives I talk to, except one son who is busy with a new wife and house and lives 500 miles away. As much as we have moved, it has been very difficult to make new friends, especially close ones that would take the time to understand rsd.

I don't know how bad your rsd is, or how much of your body is involved. I do know that I am "lucky" to only have rsd from the hips down. There might be some spread to the hands starting, but I don't want to think about that right now, lol.

I find it hard to get out of the house. I also have aids and epilepsy, so I am a real mess, I'm afraid. When you are sick or in pain or all of the above, it is almost impossible to get out and meet new people, let alone spend enough time with them to become friends.

There are quite a few "full-body" rsd'ers here, I am hoping you aren't in that category. But you DO have to take into account your ability to get out and about.

I would give anything to have the sort of relationship you have with your mother. I wouldn't want to leave that behind.

Rogue

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Old 08-19-2007, 07:11 PM #2
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This is strange the colder weather helps me but when its humid or hot i am mesirable.... I am looking forward to winter.... I hope you find something that makes you comfortable daniella! I would fear moving out there on your own... Just with no support i feel it might be really hard on you... I guess i cant drive and maybe that is why i feel that way... I really hope you find something that relives your pain

Pain free days and gental hugs!!!
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Old 08-19-2007, 10:23 PM #3
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Quote:
Originally Posted by theoneRogue420 View Post

Hi Daniella,

I got my rsd in San Diego, Ca.. I next moved to the Phoenix, Az. area. Then on to Arkansas, back to San Diego & mexico, up to Idaho, and I am now in Spokane, Wa. Whew! Long list, I move a lot. Plus I've had rsd for 14 years.

I have determined, in my experience, that each area has different troubles that cause about the same amount of pain, I'm afraid.

San Diego is much warmer, but near the beach it is cold and moist. The desert areas of Ca. and Az are hot as heck during the day, but freezing cold at night, even in the summer quite a bit. The shifts each 12 hours were murder on me. Arkansas was extremely hot and humid, which made me ache horribly. It also had a bit of snow in the winter, so I didn't escape the cold there, either. Idaho's snowy winters were hard, but the moderate to hot temps in the summer were great, plus the state is beautiful. Eastern Wa. has wonderful moderate summers, very few 100 degree days, and a lot of 80's. The winters are a mix of light snow and rain, very little snow accumulates on the ground.

I think I'd say here in Spokane is the best place, but at the same time my rsd has gotten so much worse these past few years that my ankles and knees are freezing even in 100 degree weather .

I would recommend you stay wherever you have the best support system. That is such a vital part of this disease. Without it, I wouldn't have made it this long.

I only have Michael, no friends or blood relatives I talk to, except one son who is busy with a new wife and house and lives 500 miles away. As much as we have moved, it has been very difficult to make new friends, especially close ones that would take the time to understand rsd.

I don't know how bad your rsd is, or how much of your body is involved. I do know that I am "lucky" to only have rsd from the hips down. There might be some spread to the hands starting, but I don't want to think about that right now, lol.

I find it hard to get out of the house. I also have aids and epilepsy, so I am a real mess, I'm afraid. When you are sick or in pain or all of the above, it is almost impossible to get out and meet new people, let alone spend enough time with them to become friends.

There are quite a few "full-body" rsd'ers here, I am hoping you aren't in that category. But you DO have to take into account your ability to get out and about.

I would give anything to have the sort of relationship you have with your mother. I wouldn't want to leave that behind.

Rogue

Hi ya Daniella!
I so agree with Rogue's post what she wrote here made a lot of sense! Especially "The SUPPORT" that you have right where your at now. Hoping you have a pain free night! Love Desi
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Old 08-19-2007, 10:37 PM #4
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I fear the winter more each year.

My biggest problem is that I don't notice something is getting cold and can't identify the resulting pain or discomfort as being a result of cold. I do better if I pay more attention but it doesn't come naturally to me. The shorter days seem to be a problem too.

I try to keep extra clothing on the hand and affected areas and it often works.
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Old 08-20-2007, 12:58 AM #5
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I am silent for the most part over here at the RSD site... my issue started with TOS and progressed so I can usually be found over there. Cold weather bothers me than again clothing can make it hurt worse. In the fact that you wear clothes to stay warm, but by doing so the clothes themselves actually cause pain so it is a no win situation in this matter! I just had a pain pump implanted (3 weeks ago) so will see how this winter works out... our weather the past couple days has been cool and and my finger tips and right toes have been a bit crankey and trying not to take any more of my other meds as they advance the pump ( which is turned up only to the 4% theraputic level) and rid my old meds! My trial for the pump was wonderful and hope it quells my winter burning! Well enough writing for the moment, TOS symptoms have been bad (which is what is keeping me awake tonight ) and each key stroke is starting to bother me.

My dear people may I wish that the winter weather treat us all with kindness and the lord with mercy !!! Mark~N~Goober
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Old 08-20-2007, 03:40 AM #6
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Default Sneaky weather patterns

I also have trouble with the cold, but one of the things that sneak up and tend hurt me pretty bad is changes in barometric pressure. I hardly ever watch TV, or read the news paper, so the changes kinda sneak up on me LOL.

I will be really hatin life, and wonderin what in the world is causing all this pain. Then the next day it will rain. It hardly ever rains here in central california in the summer, but winter is a totally different story.

I dont think I could handle living any where that storms alot. That would be pure torture. I also agree with the everyone else about the support. If that is something you have there, it might be a good idea to stay. But I also know how some places are truely worse for RSD, although no place is gonna be perfect, you can suffer less in some places.

I sure hope you figure out a way to be more comfortable no matter what your decision
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Old 08-20-2007, 09:39 AM #7
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Thank you all for your support and I'm sorry for your pain as well. I agree the mental support is so important but there comes a point where the pain gets to bad that overpasses it. I wish I could just bring my mom with. I know she is just a phone call away and would be there in a few hours if something happened. If I go it will just be as a winter get away to then come home.SHe would visit in between too. Just not the same. This is so scary year and she is my strength yet living in this pain is horrible. I will say whether a fluke or what yesterday and today have been cold and raining and my pain has not been this bad in months. The issue is MI is cold,rainy,snowy,for the next months. I have issues tolerating clothes and at this point socks I can't even. I have another apt at a new pc on Aug 29 now it was referred from the doc who wanted me to have that catheter with the meds for 6 weeks. I'm not going to do that now but maybe something less invasive. I have had issue with meds so on and fear this. If I move though I wonder if it would be better to go to the pc there. I hate the switching back and forth of so many doc. I want to establish consistency. All my docs in MI are all over and am not happy with and the OH ones at the clinic I don't see of course anymore since home. I was hoping maybe at this pc they could do something so I could stay in MI but I can't imagine since no on else has come up. I do know before this pn whether it be the start but in the winter my feet would go numb and never warm up like I would loose feeling. Now similar but the inner ankle where my makor horrid pain is is so strong. I have been in though for hours so maybe the temp/pain is a fluke.My solution to all the issues is to be cured. Oh how can one wish. Thanks
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Old 08-25-2007, 08:57 AM #8
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Default My move plan and treatment?

I posted this on the pn but thought I would get your opinion.After a hundred times back and forth I think I have some plan. I'm not sure like I said if the weather has an impact but after seeing progress I have been in the worst pain this week.I thought at first it was only when its cold and know my foot goes numb and the ache but now I wonder if the rain/humid makes it horrible too and swell and the pain is severe. It may have no conection at all since my symptoms are so up and down. I do see a trend though. We have non stop horrible rain/cold and now rain/so hot and after before having progress this whole week has been hell. I'm going to try ca for 1month to see. I'm so scared of getting worse and being out there but then I can come home asap or if need treatrment my mom will come there. Now I made an apt at pain management at UCLA hospital and have another apt at the reumo there too. No doc suggested the reumo but suggestions from good friends here and my weird symptoms I thought I should.I need some help with pain and want another opinion after the Celevland pain clinic who wanted the catheter. My meds are not helping and would like to try new or some kind of shot. I have only had 2 in the start but was in my leg at the start.So my next ? I want to try to leave soon cause my anxiety is horrible and go back and forth plus if the weather is effecting I want to get away from this non stop weather rain/humid. I do have an apt at u of m pain clinic do I go to hear what they say and then go to ucla and hear what they have to say. Or do I just go to ucla and then if it doesn't work there after the month do the u of m so I'm consistent? I fear going to U of M hospital and if try something then going away to ca or it making me confused more if I should go. I really don't want to go away but really do feel the weather has such bad effects on my pain. Even before the pn whether it be the start of it or not I ached and my foot froze. I am so mixed but I do feel the weather makes a huge impact but could be wrong. I just want relief.I don't want to leave my mom but need to think of the most comfort of pain. I want the best care in treatment though so where I can get that I want it.The issue with that is who knows. Like the Cleveland pain doc was suppose to be the best of the best and did nothing well he wanted to do the catheter but also said if I did the activity like I'm doing I would be so much better and I'm so not. I'm so scared of shots and pumps not for the pain of it or the procedure but the bad side effects or making it worse but need to do something.I'm still doing more each day and taking my walks but the pain has been insane. I'm able to move and have friends there to help not many but some and my old treatment team is there too for my other issues that are better but still need support. Does anyone know any good doc at ca or how ucla pain program is? I know some too know of my issues but any thought of what to ask for? I know someone suggested a patch since meds are not helping. I'm going to ask more about blocks but maybe in the spine unless there is some presision in the ankle area. Very fearful.I just can't go back to the way it was in the winter of in bed.Thanks for any thoughts. I'm so fearful of making a mistake with the move which right now is just a vaction for a month which is not when you in horrid pain and doing the right treatment for my pain and to not make it worse. I know both places u of m and ucla are suppose to be good well I think. Or is this whole idea bad? Just want the most comfort but need to stay strong mentally I promised my mom and for myself anyway. She will be there though like I said with issues or to visit. I feel bad to leaving her after all she has done like I'm mean but she knows she is my world.Ok thank you
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