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    Old 08-27-2013, 04:48 PM   #1
    snowman2
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    Smile RSD/CRPS and isolation

    Hello out there in really struggling with this illness and thought I would reach out its like the people around me don't know how to behave so I find myself hiding the pain I'm in but that only works for awhile I feel very isolated at times and really feel great full to have found this site it has helped so much . Where I live it's been so humid and hot that my pain has gone off the charts and I can't go anywhere or do anything without my pain taking over even my family and spouse find it hard at times to see me this way , I know they wish they could help but there's not a lot they can do so you out there who are suffering from this please send a message I would love to talksnowman2

     
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    Old 08-29-2013, 09:14 PM   #2
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    Re: RSD/ CRPS and isolation

    Quote:
    Originally Posted by snowman2 View Post
    Hello out there in really struggling with this illness and thought I would reach out its like the people around me don't know how to behave so I find myself hiding the pain I'm in but that only works for awhile I feel very isolated at times and really feel great full to have found this site it has helped so much . Where I live it's been so humid and hot that my pain has gone off the charts and I can't go anywhere or do anything without my pain taking over even my family and spouse find it hard at times to see me this way , I know they wish they could help but there's not a lot they can do so you out there who are suffering from this please send a message I would love to talksnowman2
    snowman2 I TOTALLY understand what you're talking about. Sometimes it seems that there is no end to this. I (for some reason) am opposite of you. The heat doesn't affect my CRPS in my leg/ankle/foot. It stays at the same pain level. In fact I use a hot tub several times a day and the water must be at least 102 degrees. any lower and it increases my pain and my "episodes". I live in an area where we are seeing temperatures reaching 94 to 98 degrees and with the heat index we're over 100. the rest of my body hates it but my right leg/ankle/foot likes it. Don't get me wrong it doesn't take the pain totally away but it doesn't make it increase like cold weather does. If you EVER need to talk I will more than happy to converse with you here. This message board has been a lifesaver for me as well as an outlet. I find it really helps me just to talk to other people who are going through what I'm going through.

     
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    Old 08-30-2013, 04:18 PM   #3
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    Re: RSD/ CRPS and isolation

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    snowman2 I TOTALLY understand what you're talking about. Sometimes it seems that there is no end to this. I (for some reason) am opposite of you. The heat doesn't affect my CRPS in my leg/ankle/foot. It stays at the same pain level. In fact I use a hot tub several times a day and the water must be at least 102 degrees. any lower and it increases my pain and my "episodes". I live in an area where we are seeing temperatures reaching 94 to 98 degrees and with the heat index we're over 100. the rest of my body hates it but my right leg/ankle/foot likes it. Don't get me wrong it doesn't take the pain totally away but it doesn't make it increase like cold weather does. If you EVER need to talk I will more than happy to converse with you here. This message board has been a lifesaver for me as well as an outlet. I find it really helps me just to talk to other people who are going through what I'm going through.
    Hi there it's good to know that I can reach out here this health boards has really helped so much and I really need to be able to talk to someone so thank you for responding , so you have episodes I call them flare ups they really shut me down for about 3 to 4 hours a day and I try to stop them but nothing seams to work . I also soak in the hit tub my feet every day it takes the ice cold feeling away but that's about it then I usually get taken away from the pain I'm good in the mornings but as the day goes on the pain builds and lately when I go do something I'm very limited , walking seams to be a big trigger I've been trying to pay attention to triggers so I can avoid flare ups sound can also be a trigger or the humidity or cold it's always something I try to laugh and have fun as much as possible as I know it's good for us or watch comedy on tv . So do you have RSD as I still call it in the one side ? I started out that way but now it's in both feet and it seams to travel through my body at times but for the most part it's in my feet and I'm at a constant 8 on the pain level what kind of meds do you take ? In curious to here what people take I know where all different hope to here from you soon have a great holiday weekend sniwnan2

     
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    Old 08-30-2013, 07:41 PM   #4
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    Quote:
    Originally Posted by snowman2 View Post
    Hi there it's good to know that I can reach out here this health boards has really helped so much and I really need to be able to talk to someone so thank you for responding , so you have episodes I call them flare ups they really shut me down for about 3 to 4 hours a day and I try to stop them but nothing seams to work . I also soak in the hit tub my feet every day it takes the ice cold feeling away but that's about it then I usually get taken away from the pain I'm good in the mornings but as the day goes on the pain builds and lately when I go do something I'm very limited , walking seams to be a big trigger I've been trying to pay attention to triggers so I can avoid flare ups sound can also be a trigger or the humidity or cold it's always something I try to laugh and have fun as much as possible as I know it's good for us or watch comedy on tv . So do you have RSD as I still call it in the one side ? I started out that way but now it's in both feet and it seams to travel through my body at times but for the most part it's in my feet and I'm at a constant 8 on the pain level what kind of meds do you take ? In curious to here what people take I know where all different hope to here from you soon have a great holiday weekend sniwnan2
    I have CRPS in my right leg, ankle & foot. I've had some starting symptoms in my left leg & foot but no where near the same as the right. I take 1800 mg of gabbapentin, 120 mg of cymbalta & 25 mg of an antidepressant that really just helps me sleep. The episodes I have are a severe burning, cutting feeling I. My leg, ankle & foot. It last for anywhere from 5 minutes to an hour. Activity is definately a trigger. Walking too much, standing too long, or having any of it touch something is excruciating. There's no end to it. It's maddening. I watch tv, listen to music & play games on ipad or pc to help keep me busy. I also started an indoor. Herb garden & that seemed to help. I've had mine for a year and 1/2 now.

     
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    Old 08-30-2013, 08:17 PM   #5
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    Re: RSD/CRPS and isolation

    Snowman, this site has been a real blessing and talking to you as much as I have has also been a blessing! I found out that taking a 600mile drive is MURDER!!!! I was in tears! I prayed, and had others helping me pray, after I got to Tennessee. I asked my church family to pray that this stupid disease wouldn't hinder me from spending time with my husband's family and one of our friends. He heard our prayers because during the four days we were there, I was able to walk around, and even get some hiking in, without being in severe pain! By the end of the day I was spent but it was good being able to walk without feeling like cutting my feet off!!! They still felt on fire all the time but the stiffness that I get and the pain that comes with it when I try to move wasn't there. I would still wake up with it but nothing like I had been. Trip home was still painful but I guess if you are sitting in a car for eight hours, what else could I possibly expect! I got home last night...well, today...YIKES! It's my 28th wedding anniversary and I haven't been able to do anything today! Just sitting here and I'm having pain like somebody is stabbing me in my calf! I know how you feel Snowman, about feeling like you don't want your family to see...unfortunately, if you are like me, we can try to hide the pain but our face tells a different story! My last night in Tennessee, we went to visit one of my friends. We went for a hike to see one of the falls out there, then drove to Cumberland State Park for dinner. By the time we got there for dinner, it was so hard to walk. I tried to put on my best face but, needless to say, my friend, her husband, and my husband, could all tell that I was in serious pain! The good news though, they love us IN SPITE of our pain!!! Let your family give you the support you need. I only went on about the things going on while in Tennessee because I was being lazy and didn't want to type on here to try to encourage you and then email you later. :-P I know, soooo lazy! haha!!! Gotta laugh or we will go crazy!!! Cyber hugs to ya!!!

     
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    Old 09-01-2013, 04:46 AM   #6
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    Re: RSD/CRPS and isolation

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    Originally Posted by JohnathanM View Post
    I have CRPS in my right leg, ankle & foot. I've had some starting symptoms in my left leg & foot but no where near the same as the right. I take 1800 mg of gabbapentin, 120 mg of cymbalta & 25 mg of an antidepressant that really just helps me sleep. The episodes I have are a severe burning, cutting feeling I. My leg, ankle & foot. It last for anywhere from 5 minutes to an hour. Activity is definately a trigger. Walking too much, standing too long, or having any of it touch something is excruciating. There's no end to it. It's maddening. I watch tv, listen to music & play games on ipad or pc to help keep me busy. I also started an indoor. Herb garden & that seemed to help. I've had mine for a year and 1/2 now.
    I saw on one of my posts that jewlz asked you about wearing a boot I don't know if you responded but in the beginning my pediatrist had me where a boot it's was very big and heavy and there was a pump so I could put air in it but it didn't help he would inject steroid into my left foot I did this 3 times then he said I need corrective surgery on my tendon 2 weeks later when I was in recovery I developed RSD they had me on crutches for many months and I had to learn how to walk again I did 3 months of pt and was aggressively treating the RSD every 5 days for 6 months they would give me SGNBs as they thought they caught it early enough and I had a good chance to kick it into remission or even get rid of it while being in crutches so long I injured my right foot the doctors said it was Perenial tendinitis so he put a boot on that foot and then the RSD spread to that foot I'm not saying that the boot had anything to do with getting RSD but my wife and I knew that if I was to injure myself that it could spread and my wife begged them to get me a wheelchair instead of crutches but they said no that I need to walk but keep in mind I'm trying to heel from surgery in the left foot and also have an injury in my right foot and wearing a boot and using crutches so if you have any signs or symptoms in your other foot be aware for its quit common for RSD/ CRPS to travel to your other foot

     
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    Old 09-01-2013, 10:27 PM   #7
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    Quote:
    Originally Posted by snowman2 View Post
    I saw on one of my posts that jewlz asked you about wearing a boot I don't know if you responded but in the beginning my pediatrist had me where a boot it's was very big and heavy and there was a pump so I could put air in it but it didn't help he would inject steroid into my left foot I did this 3 times then he said I need corrective surgery on my tendon 2 weeks later when I was in recovery I developed RSD they had me on crutches for many months and I had to learn how to walk again I did 3 months of pt and was aggressively treating the RSD every 5 days for 6 months they would give me SGNBs as they thought they caught it early enough and I had a good chance to kick it into remission or even get rid of it while being in crutches so long I injured my right foot the doctors said it was Perenial tendinitis so he put a boot on that foot and then the RSD spread to that foot I'm not saying that the boot had anything to do with getting RSD but my wife and I knew that if I was to injure myself that it could spread and my wife begged them to get me a wheelchair instead of crutches but they said no that I need to walk but keep in mind I'm trying to heel from surgery in the left foot and also have an injury in my right foot and wearing a boot and using crutches so if you have any signs or symptoms in your other foot be aware for its quit common for RSD/ CRPS to travel to your other foot
    Yeah I started having signs of it in my left foot/ankle/leg several months ago but fortunately so far it's not nearly as bad as the right. I now have a pair of canes I can use and thank god I finally found a shoe that I can wear on my right foot. See the problem is anything touching my right foot/ankle/leg is unbearably painful (the crps of course) and all shoes are tight on my foot. These aren't and they're great

     
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    Old 09-02-2013, 07:53 AM   #8
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    Re: RSD/CRPS and isolation

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    Originally Posted by JohnathanM View Post
    Yeah I started having signs of it in my left foot/ankle/leg several months ago but fortunately so far it's not nearly as bad as the right. I now have a pair of canes I can use and thank god I finally found a shoe that I can wear on my right foot. See the problem is anything touching my right foot/ankle/leg is unbearably painful (the crps of course) and all shoes are tight on my foot. These aren't and they're great
    Ya I where sheep lined slippers with a swade on the outer part for my shoes are just to painful

     
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    Old 09-02-2013, 08:49 AM   #9
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    Quote:
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    Ya I where sheep lined slippers with a swade on the outer part for my shoes are just to painful
    I know how u feel. I found shoes called five flops & they're really loose & wide so they are perfect

     
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    Old 09-03-2013, 04:52 AM   #10
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    Re: RSD/CRPS and isolation

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    I know how u feel. I found shoes called five flops & they're really loose & wide so they are perfect
    Ill have to look for those online thank you for the suggestion as I look like someone who left the house and forgot to put my shoes on lol it's real though I don't have a choice I can be stylin and suffering or where slippers and be comfortable I was also supposed to where these compression stockings that my pain center suggested from a company called jobs or something like that the cost was like 200$ a pair and they said get a couple pair so that's like 400$ and my insurance wouldn't pay for it so I never tried that plus if you want a real laugh I didn't want to have better looking legs than my wife Lol I know a lot of people use them and they say they do help and I've put all pride aside now it's all about quality of life i even use a scooter if there's going to be a lot of walking otherwise I suffer and my outing turns into an episode or flare up

     
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    Old 09-03-2013, 10:33 AM   #11
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    Quote:
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    Ill have to look for those online thank you for the suggestion as I look like someone who left the house and forgot to put my shoes on lol it's real though I don't have a choice I can be stylin and suffering or where slippers and be comfortable I was also supposed to where these compression stockings that my pain center suggested from a company called jobs or something like that the cost was like 200$ a pair and they said get a couple pair so that's like 400$ and my insurance wouldn't pay for it so I never tried that plus if you want a real laugh I didn't want to have better looking legs than my wife Lol I know a lot of people use them and they say they do help and I've put all pride aside now it's all about quality of life i even use a scooter if there's going to be a lot of walking otherwise I suffer and my outing turns into an episode or flare up
    Yep I know. I've used a scooter for about 10 months now. The five flops are at Kohls. If u can't find in store check their website

     
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    Old 09-05-2013, 09:12 PM   #12
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    Re: RSD/CRPS and isolation

    I also had a real problem finding a shoe I could wear. What I ended up with were diabetic shoes, Dr. Comfort is the brand. I was able to get two shoes in two different sizes so my bad foot wears a size and a half larger than my regular size. The ones I wear are a tennis shoe style with Velcro closings so you can adjust it by how swollen or sensitive your foot is at the time. They have been a life saver to me and although they are expensive, at least I can wear real shoes just like "normal" people do, LOL.

     
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    Old 09-05-2013, 10:37 PM   #13
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    I also had a real problem finding a shoe I could wear. What I ended up with were diabetic shoes, Dr. Comfort is the brand. I was able to get two shoes in two different sizes so my bad foot wears a size and a half larger than my regular size. The ones I wear are a tennis shoe style with Velcro closings so you can adjust it by how swollen or sensitive your foot is at the time. They have been a life saver to me and although they are expensive, at least I can wear real shoes just like "normal" people do, LOL.
    I know right. I get so tired of wearing the ankle boot & have people ask if I broke my foot

     
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    Old 09-07-2013, 06:13 AM   #14
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    Re: RSD/CRPS and isolation

    Quote:
    Originally Posted by JohnathanM View Post
    Yeah I started having signs of it in my left foot/ankle/leg several months ago but fortunately so far it's not nearly as bad as the right. I now have a pair of canes I can use and thank god I finally found a shoe that I can wear on my right foot. See the problem is anything touching my right foot/ankle/leg is unbearably painful (the crps of course) and all shoes are tight on my foot. These aren't and they're great
    Jonathan did you say you use a scooter if so is it yours or do you rent one I'm curiose for I wanted to get one but it sounds like its going to be a lot of work to make this happen snowman2

     
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    Old 09-07-2013, 03:22 PM   #15
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    Re: RSD/CRPS and isolation

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    Originally Posted by cyndel View Post
    I also had a real problem finding a shoe I could wear. What I ended up with were diabetic shoes, Dr. Comfort is the brand. I was able to get two shoes in two different sizes so my bad foot wears a size and a half larger than my regular size. The ones I wear are a tennis shoe style with Velcro closings so you can adjust it by how swollen or sensitive your foot is at the time. They have been a life saver to me and although they are expensive, at least I can wear real shoes just like "normal" people do, LOL.
    Cyndel I looked at those shoes online your right they are expensive and I hate buying things online especially shoes for I like to be able to try them on I guess my question is are they really comfortable as my RSD is in both feet and they get really sore fast snowman2

     
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