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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • RSD/CRPS and isolation

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    Old 09-08-2013, 04:23 PM   #16
    cyndel
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    Re: RSD/CRPS and isolation

    Well, I got mine at a drugstore that carries all kinds of medical supplies so I was able to try them on, otherwise I wouldn't order them online either. Some days they aren't quite as comfortable when my foot is going crazy and feels like it is going to bust out of my shoe. Then it turns out it isn't even swollen, it is just the nerves acting like it is. I don't know if it is possible to have your foot or feet totally comfortable but with these, I am at least able to wear shoes and just get used to the feeling. I noticed you asked about a scooter. I use one and absolutely love it! I have more freedom now and feel a little more independent. I got mine on ebay and did a lot of research, well as much as I could without being able to try one out. Mine is a DRIVE brand and is portable so we take it apart and put it in the trunk and I am all set no matter where we go.

     
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    Old 09-08-2013, 09:05 PM   #17
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    Quote:
    Originally Posted by snowman2 View Post
    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
    Hi snowman2 sorry took so long to reply. No I didn't rent they're expensive. Work comp refused to pay for one so my partner & I found a good used one. It had been used only 3 or 4 times. We lucked out.

     
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    Old 09-08-2013, 09:08 PM   #18
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    Quote:
    Originally Posted by cyndel View Post
    Well, I got mine at a drugstore that carries all kinds of medical supplies so I was able to try them on, otherwise I wouldn't order them online either. Some days they aren't quite as comfortable when my foot is going crazy and feels like it is going to bust out of my shoe. Then it turns out it isn't even swollen, it is just the nerves acting like it is. I don't know if it is possible to have your foot or feet totally comfortable but with these, I am at least able to wear shoes and just get used to the feeling. I noticed you asked about a scooter. I use one and absolutely love it! I have more freedom now and feel a little more independent. I got mine on ebay and did a lot of research, well as much as I could without being able to try one out. Mine is a DRIVE brand and is portable so we take it apart and put it in the trunk and I am all set no matter where we go.
    Hey cyndel that is the same brand of scooter we bought. Is yours a 4 wheeler or 3 wheeler?

     
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    Old 09-08-2013, 09:28 PM   #19
    cyndel
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    Re: RSD/CRPS and isolation

    I got a 4 wheel one, was afraid of the possibility of it being tippy. My balance is terrible so I am really scared of falling.

     
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    Old 09-08-2013, 09:46 PM   #20
    JohnathanM
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    Quote:
    Originally Posted by cyndel View Post
    I got a 4 wheel one, was afraid of the possibility of it being tippy. My balance is terrible so I am really scared of falling.
    I know how you feel. I was scared of the same thing

     
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    Old 09-09-2013, 09:22 AM   #21
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    Re: RSD/CRPS and isolation

    Quote:
    Originally Posted by JohnathanM View Post
    Hi snowman2 sorry took so long to reply. No I didn't rent they're expensive. Work comp refused to pay for one so my partner & I found a good used one. It had been used only 3 or 4 times. We lucked out.
    Wow lucky you

     
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    Old 09-09-2013, 09:28 AM   #22
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    Re: RSD/CRPS and isolation

    Quote:
    Originally Posted by JohnathanM View Post
    I know how you feel. I was scared of the same thing
    Cyndel hi I'm just working on getting one my nurse advocate said I need to get a referral from my doctor but he always says I need to walk but I can't walk so I suffer

     
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    Old 09-09-2013, 09:40 AM   #23
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    Re: RSD/CRPS and isolation

    Quote:
    Originally Posted by snowman2 View Post
    Cyndel hi I'm just working on getting one my nurse advocate said I need to get a referral from my doctor but he always says I need to walk but I can't walk so I suffer
    I forgot to ask how you got your cart/ scooter I myself rent one when they offer them but there not cheap so I thought I should qualify through my insurance ?

     
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    Old 09-09-2013, 11:00 AM   #24
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    Re: RSD/CRPS and isolation

    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
    Hi Snowman,
    I was asking about the boot because I wasn't sure if anyone was using those to help you walk. It terrifies me to have to end up using a scooter so I use my cane and just suck it up. I hate wearing shoes! Even my light sandals that just slip on hurt. When I had to wear a brace, I had to use a Lidocaine patch with it because where the brace ended, it would rub on my leg and that would cause tremendous pain! I quit wearing the brace for that reason. That's why I was asking about the boot because I have read on here how a lot of people use them. Just curious.

     
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    Old 09-09-2013, 11:40 AM   #25
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    Re: RSD/CRPS and isolation

    I am not on workman's comp or anything, didn't figure my insurance would pay for it so just bought it myself off of ebay. The one I got was only 675 with free shipping and it has been worth it's weight in gold. I can walk and do walk but only short distances, like 15-20 yards is my limit or I really pay for it so to me it was very limiting. Dr.s and PTs always say to walk and of course you should as much as you can but everyone has their limits as to how much they can without suffering so it doesn't make sense to me to push yourself past your limits and then pay dearly for it. That is how I think anyway.

     
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    Old 09-09-2013, 11:54 AM   #26
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    Quote:
    Originally Posted by snowman2 View Post
    Wow lucky you
    I know. U can find one too. Check Ebay and Craigslist. I found mine on craigslist

     
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    Old 09-09-2013, 12:04 PM   #27
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    Re: RSD/CRPS and isolation

    My husband found a really nice scooter on Craigslist. He wanted to buy it for me so that I can use it on the days that we want to take a walk. On good days I can handle the walk around the small lake (and I mean small!!!!). It has side walk all around it so it wouldn't be a problem for a scooter. I wouldn't let him buy it for me because I am just not ready to accept anything like that yet! I can tell that I am getting to that point because I have to hold on to the walls in my house to walk but I am just not there yet. I guess if anything, I should have let him buy it and just store it until the time comes when I have no choice but to use it! Pride is a terrible thing and my worst enemy right now! I hate the fact that I have to use a cane when I go outside.

     
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    Old 09-09-2013, 03:53 PM   #28
    cyndel
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    Re: RSD/CRPS and isolation

    I have been using a cane for 3 years and was so glad to get off the walker after my hip replacements that the cane was a big improvement. The vanity disappears out of necessity and practicality. When I use the cane I hate the pity and curiosity looks I get but when I use my scooter, I can just zip past and not pay any attention to the looks I get!

     
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    Old 09-09-2013, 09:02 PM   #29
    jewlz67
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    Re: RSD/CRPS and isolation

    Cyndel, I have just told people that I'm gonna put that Bling stuff on my cane and that I'm giving it a name since it's my new best friend. My cane's name is Ilene. :-P I told Snowman2 that one before. I'm just trying to keep my sense of humor through all of this and hold on to all that I can for as long as I can! I understand that each of us are in different stages with this stupid disease. Unless the Lord heals me, I know I'm not to far from that. For now though, as for myself, I'm using the walls and my cane. I looked at those 5 flops online, I don't think I could wear those even before my injury. I have never been able to handle anything between my toes. Snowman2, I may have to do what you are doing and get the sheepskin slippers.

     
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    Old 09-10-2013, 09:01 AM   #30
    cyndel
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    Re: RSD/CRPS and isolation

    Jewlz, that is a cute name for your cane!! Also, maybe a good idea to bling it out!! I wish mine was invisible but since it isn't, maybe I should think about doing it too.

     
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