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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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08-19-2007, 07:38 AM | #1 | ||
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Magnate
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I posted a similar topic on pn which I go on most but since my pn is suppose to be treated like rsd I thought I would get your advice too. I live in MI and know that in the cold my pain is so much worse. The effected areas hurt so much more,my foot goes numb,and a severe stabbing ache. I fear the winter and even today its cold and rainy and my pain level is so much higher. So I was thinking of relocating to CA or Fl. My fear is though I live on my own now and am 29 my mom has been my support and hope through this. If not for her I would not have made it through. I have only been dealing with this for 6 months but she won't let me give up and is my best friend. If I needed something she would fly out asap or me home. It so not the time to move but at the same time I can't live in more pain even like today its a cold/rainy day and my pain is worse so it seems like a must. Right now I have made progress from the 23 hours I was in bed but still the pain is horrid. I am out and about though full days and even take 10-15 minute slow walk. I have an apt at u of m pain clinic which was referred after ohio pain clinic. Right now though in pain I'm not willing to try new things in fear of making it worse. If I stay like this though I will have to try something cause can't live like this so I could do ucla pain clinic or another one there anyone heard of any there or come home or in Fl there clinic. Any thoughts? I'm so conflicted and my mom won't move but would visit. I had been to ca in the past and know a few people but not much but had planned to move there a few years ago or my gramps that I'm not so close tihe lives in Fl and he could at least drive me if I had a procedure. I have little family or friends so other areas wouldn't be an different. Thank you
Last edited by daniella; 08-19-2007 at 07:57 AM. Reason: add |
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08-19-2007, 09:08 AM | #2 | ||
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Daniella,
Ive noticed that the weather has a horrible effect on me. The cold, rain and when its humid. I live in mass and iam not looking forward to winter coming. I stay inside for most of the winter, only going out when i have to. I try to keep the effected area warm as I can. I wrap it up in a heating pad. I find that the pain from the cold is worse than the pain from the rsd. Take care. Sue K |
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08-19-2007, 09:49 AM | #3 | |||
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Magnate
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I was thinking about that same thing here in Co. I am dreading the winter here. last winter was the worst winter I have had here since I got RSD and Fibro. I am not looking forward to this winter coming up. I don't know if it's because it was a wet snowy winter or if it was just me getting worse. It drove me nuts.
This summer here has been so humid that I haven't been able to get out to do much. We usually have dry weather here. I thought about leaving here but I don't know where to go that would be any better. Like you, I don't have an answer. Ada |
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08-19-2007, 12:00 PM | #4 | |||
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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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There are only two types of people in this world... those who bring you peace and those who don't. |
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08-19-2007, 07:11 PM | #5 | ||
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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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Jacquelina . |
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08-19-2007, 10:23 PM | #6 | |||
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Quote:
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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I Will Always Believe in Poems, Prayers And Promises Love, Desi . |
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08-19-2007, 10:37 PM | #7 | ||
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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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08-20-2007, 12:58 AM | #8 | ||
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In Remembrance
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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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It is always a mistake to take kindness as weakness . First you forget names, then you forget faces. Then you forget to pull up your zipper. But it's worse when you forget to pull it down. . |
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08-20-2007, 03:40 AM | #9 | |||
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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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. Gone Squatchin |
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08-20-2007, 09:39 AM | #10 | ||
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Magnate
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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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