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    Old 03-07-2009, 04:50 AM   #1
    Paulmac
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    Frozen Legs


    Hi
    I have suffered with RSD since 1997 after an accident. I have RSD in both legs, both shoulders, and its now starting in my hips. The Medication I am on: Morpine Patches. Zopiclone, Temazepam, Diazpam. Then Zotan Fastab for stomach problems that occur from the above medication.
    One of my biggest problems is my legs, they feel like they have been stuck in a Freezer, and are always froze. I have tried lots of different things, but so far nothing works. I even got some long Johns from Norway, as they were fleece lined. But still my legs remain cold.
    In the UK, I think we are behind in a lot of things to do with RSD. It is also very hard to find a Doctor, or Specialist who has full knowledge of RSD. In the early stages when I was diagnosed with RSD, I had a Specialist who was very good with RSD. But he retired in the second year of my diagnosis. I am now trying to get to see a Professor in Bristol UK .
    I do have a few good days, when the pain is bearable, and I try to push myself in to doing things. But over the last 8 Months, I feel like it now taking its toll on my body. And so is all the different medication I have been taking over the years.
    Due to the lack of knowledge with RSD, in the UK, I have hade two further operations on my left shoulder. But no one took in to account the fact that I had RSD. After the first operation they were trying to bring me round after the anaesthetic. I was in so much pain. They just pumped as much morphine into me as possible. This did knock me out after about one hour. When I awoke, I was on a high. I felt great, so a Doctor said I could go home. My wife was concerned about this, as she had been told I would be staying in. The operation should have taken about 30 minuets, It took 3 hours. I went home high, and happy. I did not remember the next 3 days, but woke up to find myself back in hospital. They think it was anaesthetic Temperature. By I remained in more pain, than before I had the operation. But all they say to you is,( give it time, it will settle down) If Only!!!!!!!!
    So to finish, I hope you can all have a Pain Free Day

    Kind Regards
    Paul

     
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    Old 03-07-2009, 09:02 AM   #2
    feelbad
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    Re: Frozen Legs

    i am just wondering if this an actual "perception' of being too cold,or your actual skin temp is very cold, or both? marcia
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    Old 03-07-2009, 10:56 AM   #3
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    Re: Frozen Legs

    Hi Marcia
    No, its the actual temperature of my legs. If you have ever touched a dead body. Then my legs feel the same.
    Have a pain free Day
    Regards
    Paul

     
    Old 03-07-2009, 04:35 PM   #4
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    Re: Frozen Legs

    You have the same problem the majority of us rsd'ers have, skin that is cold to the touch. Despite what the "books" say about rsd, it really doesn't start off with hot skin, majority starts and stays cold. A minority of people have hot. Due to the skin temp, we tend to refer, sometimes, to "cold" rsd and "hot" rsd. It defines nothing more than the skin temp.

    There is nothing that can be done to make it better unfortunately. It's a part of rsd due to the lack of proper circulation to the affected parts of our bodies. This lack is also the cause of the discoloration of the skin as well. I frequently wear 2 pair of socks on my feet and can leave them on all day and night. When I take them off, my feet feel freezer cold as well. I got rsd after breaking my knee at work 6 yrs ago. I was full body in 11 months. I'm sorry it's spreading into your hips though. I agree with you in the lack of knowledge about rsd in the UK. I've only met a few and hear the same from them.

    If you have any other questions or whatever, fire away! Welcome to the board, too bad it has to be because of this.

    Hugs,

    Karen

     
    Old 03-08-2009, 12:58 AM   #5
    Paulmac
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    Re: Frozen Legs

    Hi Karen
    Thank you for your reply. Yes I wear thick socks all day, and at night .(What we must look like lol )
    It is a terrible feeling though. I thought after all the stages I went through with RSD, and when your legs come back to looking more normal, I would just have the pain to deal with. But this frozen feeling all the time, There is no escape from it. All the Medication I am on, but nothing alters the Frozen feeling. It was suggested to me a few years back by a specialist, I would be better having them amputated. But I said no way. They are very very painful, but they are still my legs. Reading some of the things on hear, it seems your specialist, and Doctors take more notice about RSD. And take it into account, before any procedures.
    I found this out the hard way. Due to the lack of knowledge I have undergone operations and stated about my RSD, but many look at you, as if to say ( So What ) They do not believe in the UK that RSD can spread through the body. So having operations, or needles stuck in your back, or any other part of the body. As no affect on RSD. This is one of the reasons, why over the past years I have been trying to gather as much evidence, so I can at least try to explain to some Doctors, that when they say they are thinking of trying this, or that on my body. I can tell them the effect this might have on my RSD.

    Does anyone know the address of the German Doctor, and his name who is doing the Ketamine Coma?

    Karen, I hope you have a pain free day. And maybe we can find some woollen tights. This may help to try and put the temperature up in our legs, and Feet.

    Take Care
    Kind Regards
    Paul

    Last edited by Paulmac; 03-08-2009 at 03:43 AM.

     
    Old 03-08-2009, 07:15 PM   #6
    Gaollan
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    Re: Frozen Legs

    We may look funny wearing out socks all the time but hey....we're at least trying to help ourselves! Woolen tights....hmmm....maybe we can design our own!

    They're not doing the ketamine coma in Germany anymore. A stop was put to it recently because a woman contracted MRSA, you know that nasty thing that eats big holes in you and well, unfortunately for this woman, it did indeed kill her. The lack of care or regard for her health ended us sending any patients there for it. Dr Schwartzman was the doc here sending them to Germany. They, as far as I know, are still doing the coma in Mexico and Dr. Kirkpatrick here in my state of Florida is the one whose always sent them and still is sending some there. Dr S and Dr K are 2 of the top docs for RSD here. They are awesome. I've never been to either one but lots of others have. Last I heard, Dr S has a long waiting list to get in to see him, as in over a year! I don't believe Dr K has that problem. LOL

    It's horrible docs over there don't have a clue about rsd. In the majority it does spread. The amount of time it does it in is unique to each of us. We're all different and our bodies unique. I believe there are other factors that contribute to spread as well, such as using ice, having pain uncontrolled by sufficient meds and over zealous physical therapists! It's good you're at least trying to educate them. I hope a few here and there will "catch up" on rsd and quickly!

    I can't believe that doc actually suggested amputation. OMG!!! I've heard a couple of other stories over these past years like yours but only a couple. That isn't going to help the rsd at all anyway. *shakes head* Glad you had enough sense to realize you wanted to keep your legs right where they are. LOL

    Hugs,

    Karen

     
    Old 03-09-2009, 01:57 AM   #7
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    Re: Frozen Legs

    Hi Karen
    Thank you for your reply. Yes, maybe we should design some tights. Feel abit funny for Men, lol but if it keeps you warm, then who cares.
    Yes they seem so far behind here in the UK. I have to find out everything of the net. Then try to explain it to my specialist. But they think they know best, so it is hard sometimes in making a decision to have certain procedures done.
    Karen, I hope you are having a good day, to day. And thank you for our little chats.
    Take Care, and have a pain free Day
    Paul

     
    Old 03-09-2009, 10:32 AM   #8
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    Re: Frozen Legs

    I too have the feeling of a very cold leg.The more cold it gets the more it hurts.My doctor had recommended using a heating pad.Man am I glad she did.It does help.It helps to keep my leg warm and for keeping the blood flow good so I don't lose circulation. She also had recommended using hunting socks.They have a small battery pack and coils that heat up and make you warm.They can be great to use for when you have to go outside and deal with all this harsh winter weather.The fabric unfortunately is quite uncomfortable rubbing against the skin.It is a thick wool like fabric and keeps you warm but can hurt to have it on.I'm very VERY sensitive to touch and even my own air movement.Maybe the hunting socks would help someone else more than it would me. I would for sure get a heating pad.One of those extra large ones for your legs.I use one that pretty much covers from the top of my knee to my ankle.Those areas are the worst areas of rsd for me so keeping it warm can be the difference in walking or not walking.I hope I am able to help you with these tips.Let me know how it works out if you choose one of those.

     
    Old 03-09-2009, 01:09 PM   #9
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    Re: Frozen Legs

    Hi harmony85
    Sorry you did not leave your name. Thank you for your reply. I am interested in this large heat pad, have not seen them in the UK. So if you could pleas give me the make, I will go on Google. As for the hunting socks, again in the UK, we do not have this type of sock, but I will look on Google again. As you say, it is terrible when your legs feel frozen, and the stiffness. But then in Summer, do you still feel like your inner bones in your legs are frozen, but then the heat makes them all swell up, and the skin gets very tight. So it’s a no win situation really. In the winter the actual temperature of my legs are very cold. In the summer months, I still feel like they are frozen, but I get the swelling, and tightness. I would describe the feeling I have in my legs, like having them in an icebox, then you have the burning feeling on top, and as if, millions of bees were in your legs.
    I am here anytime, for anyone wanting help, or just to let of steam. Have a Pain Free Day
    Kind Regards
    Paul

     
    Old 03-09-2009, 03:35 PM   #10
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    Re: Frozen Legs

    Quote:
    Originally Posted by Gaollan View Post
    You have the same problem the majority of us rsd'ers have, skin that is cold to the touch. Despite what the "books" say about rsd, it really doesn't start off with hot skin, majority starts and stays cold. A minority of people have hot. Due to the skin temp, we tend to refer, sometimes, to "cold" rsd and "hot" rsd. It defines nothing more than the skin temp.

    There is nothing that can be done to make it better unfortunately. It's a part of rsd due to the lack of proper circulation to the affected parts of our bodies. This lack is also the cause of the discoloration of the skin as well. I frequently wear 2 pair of socks on my feet and can leave them on all day and night. When I take them off, my feet feel freezer cold as well. I got rsd after breaking my knee at work 6 yrs ago. I was full body in 11 months. I'm sorry it's spreading into your hips though. I agree with you in the lack of knowledge about rsd in the UK. I've only met a few and hear the same from them.

    If you have any other questions or whatever, fire away! Welcome to the board, too bad it has to be because of this.

    Hugs,

    Karen

    Hi Karen
    I found your reply fascinating, but at the same time sad, due to you having full body RSD. I have never known anyone, or have spoken to anyone with full body. I am interested because at night when I take all my night time medication, it sort of knocks me out for a couple of hours, ( which is fantastic). But my Wife tells me the next morning, I have had a terrible night, She has to unlock my arms, as I am in agony, also to help turn me over, due to me being in so much pain. Also the same problems with unlocking my legs. Yet due to the Zopiclone I have no memory of it happening. Or even trying to communicate with my Wife. Thankfully I have a very understanding, and very kind Wife. Who has put up with this disturbances for the last 12 years.
    So Karen, when you say full Body. Could you try and tell me your experience, if that’s not being to personnel. Its just that in the UK, its very hard to even find anyone who understands RSD properly. So I hope I can find out as much information from people like yourself, so that I can pass this information on. Also to help get my pain under better control.
    Many thanks Karen
    Kind Regards
    Paul

     
    Old 03-09-2009, 06:43 PM   #11
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    Re: Frozen Legs

    It's not too personal at all to discuss the rsd and my experience being full body! You could ask me much more personal questions than that and I'd still answer! LOL I'm a very open person. RSD, at least from how I see it, you have to leave behind some of the more.....ummm.....you have to be willing to discuss some things you never thought or dreamed of discussing with anyone ever. Such as bathroom habits. LOL We all know meds will mess up things! Sorry if this gets a bit long. Thought I'd warn you in advance. :-)

    First to address your amnesia after taking the Zopiclone at night. I looked it up, one because I know names of meds are different there than here and 2 because the amnesia concerned me. So, it lists under side effect memory disturbance....Amnesia of varying severity has been reported following normal doses of medications like zopiclone. This effect is rare with zopiclone. I guess you win a prize? LOLOL Have you told your doc about the amnesia?

    My experience with full body. Depending on who you ask you'll get 2 different answer as to what the "definition" of the term is. Someone with it in all 4 limbs will say they're full body, others say you have to have it in all 4 limbs plus the body itself like your back and front before you can say you're full body. My opinion is if it's in all 4 limbs, full body, the front and back of you might join in soon enough! LOL If not, well jeez it's in all the usable parts so that's your body.

    It took 11 months to spread to all 4 limbs and hips. In the past couple of years, back and front, a bit in my face. I feel all the various ways we can describe pain in all parts. Such as the stabbing,shooting pain everywhere at different times. Burning sensations that flare up in every part of my body and face at various times. Hate when my cheekbone burns! Pain in the muscle that feels as if it's tearing apart, pain deep in the bones, etc. I take baclofen for the muscle spasms and uncontrolled jerking of my arms and legs. These are pretty much confined to my arms and legs. It was bad before I began taking the med but now it's hardly a problem at all. For pain control I only take vicodin 10mg. It takes it down enough for me to function. I can't run marathons but I can get out of bed. LOL I take it also because of financial considerations. It's hard paying for everything on my own, vicodin doesn't cost much and I only have to see my pm doc once every 3 months instead of every month. :-)

    If you have pain and other symptoms all over, it's full body. Oh the cold skin and discoloration. In my legs and feet they were cold and turned colors right away. When it went in my arms I had pain and spasms, but no discoloration or coldness. They cropped up about 2 years ago. Now my arms and hands are always cold like my legs and you only see the discoloration of the skin if I let my arms hang at my sides. Another person with rsd I knew had it in her arms as well with no temp or color change for quite awhile but had the pain and stuff like I did.

    I have had the hair on my legs fall out. Not totally, but now it's very sparse and the feel of it is more wiry and rough. On my arms I have the hair on them I always have. The hair on my head has fallen out from the beginning and in the past year or 2 has gotten much worse and now falls out a lot and sometimes in clumps even! My nail growth has changed. Toenails barely grow and fingernails grow a little bit faster than they used to.

    *thinks* That's all I can think of right now of how it has affected my parts. LOL I'll answer any other questions gladly. Remember, nothing is too personal! :-D

    Hugs,

    Karen

     
    Old 03-10-2009, 03:47 AM   #12
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    Re: Frozen Legs

    Karen
    Thank you for your reply. Yes I know were you are coming from with the bathroom habits. LOL. That’s just part of taking all the different med. I also have to take medication
    Due to the effects it is having on my stomach. I have tried lots of Medication over the years, but I am at a stage were I cannot get my pain to a bearable level. Buprenorphine transdermal Patches. I put one 20mg ever 4 days now, I also have tried a 5mg/10mg as well as the 20mg after talking it over with my Dr. I have found that when you get your Medication right, which is sometimes very hard to do. Then your quality of life feels very good, and you can deal with thinks a lot better.
    The discolour I had in my foot was way back in 1997, It went from black, to red, to a lighter colour, then within about 3 to 4 years it returns to your normal looking foot. You are then left with the pain, and in my case, no movement in the ankle. Then over the years, and through Specialist, Dr, not knowing enough about RSD. I had other operations done, that I believe, this is what caused RSD to spread to other parts of my body.
    But here in the UK, they do not believe RSD travels
    As for my Zopiclone 7.5 mg I take two, with other medication at night. Now in the UK the amnesia pat of it, is understood. You are not supposed to take 2 7.5mg at night, but due to the high level of pain I am in, this so far, is the only thing, that allows me to get 2 to 4 fours sleep.
    Karen, I just looked up your Medication vicodin 10mg, it does not have a very good write up? I am waiting to go and see a Professor in RSD. I then hope to have some better understanding of RSD, and get my pain more under control. As you stated, if you do anything, you pay with it for days with Pain, and you feel absolutely shattered.
    So I just hope, you can all have one free day of pain.
    Kind regards
    Paul

    PS: l Know I would have forgot something. I believe my RSD spread after having two operations on my right, and left shoulders. After the left one, I was in agony after coming out of the anaesthetic. This, I think triggered the RSD in my shoulders, neck, and parts of my back, and joints. As for my right leg, I just have the same feelings, and Frozen symptoms as the RSD in my left leg. But I cannot explain, or understand how it travelled to my right leg?
    Karen, I am interested in our yours spread

    Last edited by Paulmac; 03-10-2009 at 04:57 AM.

     
    Old 03-10-2009, 10:12 AM   #13
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    Re: Frozen Legs

    I can bet without precautions the surgeries most certainly caused spread to the rest of you. As for the right leg, it doesn't need another injury or anything to go to another part. Mine just spread. The pain impulses from nerves to brain are a part of the chatter in our bodies. It's because the rsd travels this way that allows it to go everywhere it wants to.

    There are different patterns of spread. My spread was called mirror image. It started left knee/lower leg/foot, went up into thigh and hip. Then it went to my right foot and went straight up to hip in a short time. Left arm/hand to top of shoulder and right arm/hand to top of shoulder. Past couple of years went into lower back then middle then upper back and face the last year or so.

    Another pattern is continuity type. Where it spreads upward from initial site like hand to shoulder. Hmm.....it just occurred to me I would have both mirror and continuity type then. It spread upward from lower leg to thigh and hip before mirroring to the right leg. Wow....never thought about that.

    Then there is independent type spread. That is the kind that jumps. An example would be it started in a leg then jumped to a hand/arm. As I've said, it doesn't have to have a reason, it can be spontaneous spread with no cause.

    What did you read about vicodin? It really is a mild pain med compared to what a lot of others are taking. It doesn't cause any problems except for, of course, constipation which most meds end up causing. I wish they could find a way to make that one go away! lol Other than that it's not bad in any way. The patches you use, the sound similar to what we have here. We have Duragesic patches changed every 3 days. The drug in it is fentynal which is actually stronger than morphine. It comes in 25,50,75 and 100mcg strength. I was on the 25 at one point very early on. I shouldn't have been considering I hadn't been given any other meds except for 2 months on 7.5 vicodin and 5mg vicodin. I got hurt at work so had to deal with the work comp system which is a nightmare! They deny everything and hurt you more than help.

    Hugs,

    Karen

     
    Old 03-10-2009, 12:04 PM   #14
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    Re: Frozen Legs

    Hi Karen
    Thank you for the info. All very interesting. But I think I will have a hard time here in the UK trying to convince Dr, and Specialist that RSD spreads like this. Here in the UK they think after you have been diagnosed with it, that’s it, you only have it in that one area. Before any operations, or injections, I state I have RSD.
    The reply…“yes we can see on your medical notes” that’s it, They take no notice.
    Sorry Karen, I think I was reading something else, not---vicodin

    Kind Regards
    Paul

     
    Old 03-10-2009, 05:14 PM   #15
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    Re: Frozen Legs

    No prob! It's so sad they refuse to acknowledge spread! To me, it's one of the most important aspects of the whole thing. Dr S and Dr K need to take some time and do some of kind of conference for the UK docs about rsd and get them up to speed.

    Hugs,

    Karen

     
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