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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • Cold RSD, long-term

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    Old 02-18-2013, 11:55 AM   #1
    cj4426
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    Cold RSD, long-term

    My name is Charley. I'm 21 years old and was diagnosed with RSD/CRPS IIin 2009, with my symptoms described as a "non-classical presentation." My symptoms are primarily of the cold type. I developed RSD in both of my knees after a pair of surgeries to correct synovial plica syndrome, also in both knees.

    My case is considered "non-classical" for several reasons. First, it affects only my knees and the part of my thighs immediately above them; I do not feel significant effects anywhere else on my legs. Second, my pain is unusually mild for RSD sufferers, particularly those with cold-type RSD. I suffer mostly from increased sensitivity to ordinary bumps, scrapes and brushes against objects, or to pressure on the knee itself caused by kneeling, though I do experience a near-constant low-level ache in both knees (I would rate it perhaps 2-3 out of 10). My doctor thought I was simply suffering normal post-surgery pain and stiffness until a physical therapist noticed that my skin was ice-cold to the touch during a sonophoresis ibuprofen session. The only significant impairment I have ever experienced was an inability to wear jeans for longer than a few hours. Prolonged contact with the coarse fabric would leave me with an unendurable level of pain, but thanks to a simple home PT exercise I was taught by a therapist, that is no longer a problem for me.

    All this to say, I consider myself to be almost absurdly fortunate in having such mild symptoms, even more so after reading some of the stories on this board. I <read that> cold-type RSD has a poorer long-term prognosis and is more likely to progress over time than the more prevalent hot-type RSD.

    My question is for long-term cold RSD sufferers. At this point, my symptoms have been largely unchanged for about a year and a half. Should I expect them to start getting worse again at some time in the future? Thanks.

    Edit: Saw my post was edited by an administrator, and then I went and read the posting policy. I really should have done that before I made this post. I now understand posting links to studies is not allowed and it will not happen again. My bad!

    Last edited by cj4426; 02-19-2013 at 10:30 AM. Reason: apology

     
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    Old 02-18-2013, 09:15 PM   #2
    jewlz67
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    Re: Cold RSD, long-term

    I'm still new to RSD, I have only been diagnosed now for eight months. I have never heard of hot/cold RSD. So now, I have a question for you...do you have the burning pain but skin feels cold? For myself, my foot will feel like it's on fire but I feel like I cant keep my toes warm. My toes are always ice cold, even when my feet feel like they are on fire! Is this what you experience or is your symptoms just the cold? Sorry, I know that isn't your question but I had never heard of cold RSD.

     
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    Old 02-19-2013, 10:25 AM   #3
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    Re: Cold RSD, long-term

    I should have been clearer. The pain I feel is a diffuse ache which sometimes becomes more intense until I can't stand it and have to stop what I'm doing.

    When I touch one of my knees with my hand, my knee feels cold to the touch. I do not feel cold in my knees (I.E., I don't feel a need to wrap my knees in a blanket or warm them up). The coldness is only noticeable compared with other parts of my body. I have noticed that on a particularly bad day with regard to pain, applying a heat pad/electric blanket or hot water to my knees tends to reduce the pain by quite a lot for a few hours.

    As for burning sensations, that is not really something I commonly experience. I understand that deep aches are more common among cold-type RSD sufferers while burning sensations are more common among hot-type RSD sufferers. On a few occasions when I have scraped my knee against a coarse surface, I have experienced a sort of tingling or buzzing feeling which expands to cover my whole knee and is accompanied by a weak burning or stinging sensation, but that typically only lasts for a few minutes afterwards.

    (Just to be completely clear--when I say "cold type" I mean that affected skin is cold to the touch, and "hot type" means that affected skin is hot to the touch. Unless I am mistaken those terms refer to what the skin feels like when you touch it with an unaffected body part, not to the sensations you actually get from the RSD-affected area.)

     
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    Old 02-19-2013, 08:14 PM   #4
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    Re: Cold RSD, long-term

    Ok, totally understand what you are saying now. This is kinda weird to me...my leg will feel like it's on fire but if you touch the skin, it is colder than the other leg. There are times when the PM doctor checks skin temperature, the RSD leg will be a few degrees colder than the normal side. My toes get the coldest with this though. The RSD goes from my foot up to my back now. It originally started in my foot. Obviously, I dont have a lot of knowledge with the cold/hot RSD. I am like you in the fact that my pain level stays between a 2-3 except for when it flares up...then we go up to a 4-5. The pain scale goes up for me when I start having back spasms because of all of this! I get the deep aching in my leg as well as the burning pain in my leg. There are times I get the feelings of stepping on nails but the neurontin has helped that part out tremendously! I hope and pray that yours doesn't get any worse than what it has.

     
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    Old 02-20-2013, 09:53 AM   #5
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    Re: Cold RSD, long-term

    I'm stuck with the 'cold' version. My pain does not go below a 4-5, ever. The pain meds may take the edge off but that's about it. The only way that I can describe this to my Dr. or anyone else is, say you have a large cooler with lots of ice & water in it & only 1 soda left, but you can't see the bottom so you have to stick your hand & arm in to search for the soda & can't find it. Only until after you can't stand the ice cold & it hurts to keep your arm in the cooler, you take it out & the pain that you feel is what my leg feels like several times a day. Among other feelings...

     
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    Old 02-20-2013, 03:19 PM   #6
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    Re: Cold RSD, long-term

    Yeah, that is different than mine. For me, I feel like I am about to combust and that my leg is burning...but if you touch my leg or feet, it feels ice cold. Then at times, my leg and foot is on fire but my toes are freezing. Then when the skin sensitivity starts, it's like your skin hurts, like when you have a fever. I told my PM doctor, when my pant leg rubs against my ankle, it feels like somebody is using sandpaper across my leg! So I'm guessing by the sound of it, mine is more hot than it is cold!

     
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    Old 01-23-2014, 05:19 AM   #7
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    Re: Cold RSD, long-term

    Quote:
    Originally Posted by jewlz67 View Post
    I'm still new to RSD, I have only been diagnosed now for eight months. I have never heard of hot/cold RSD. So now, I have a question for you...do you have the burning pain but skin feels cold? For myself, my foot will feel like it's on fire but I feel like I cant keep my toes warm. My toes are always ice cold, even when my feet feel like they are on fire! Is this what you experience or is your symptoms just the cold? Sorry, I know that isn't your question but I had never heard of cold RSD.
    I googled how to deal with RSD cold and this came up lol!!!! Small world

     
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    Old 02-16-2014, 04:10 PM   #8
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    Re: Cold RSD, long-term

    Hi . I have cold CRPS/RSD mostly my lower limb from past fractured patella to toes are like ice. My last consult by pain specialst reports lower limb is 3.5 deg colder. . also i do have sensitivitey some days i can't wear my compression bandage to keep swelling at bay as it too uncomfortable . My neurologist has told me this cold type CRPS is far more serious than the hot type CRPS .. . hearing that and the fact that i can no longer work in my normal employment owing to discomfort when standing for long periods of time has tipped my life upside down. My life style in work and play is also effected.

     
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    Old 02-25-2014, 11:32 PM   #9
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    Re: Cold RSD, long-term


    New here. I have the cold crps Type 2 in my right foot starting to spread up my leg some. I have the burning crushing squeezing heavy feeling. I have the sensitivity, my pain is at a 7 tonite. Can go down to 4/5 at times mostly 7 or higher for me. cold to touch toes & foot. Glad to hear cj your in milder pain, you are so young wish you didn't have to go thor this monster we got.

     
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    Old 02-27-2014, 03:10 PM   #10
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    Re: Cold RSD, long-term

    Quote:
    Originally Posted by marching on View Post
    Hi . I have cold CRPS/RSD mostly my lower limb from past fractured patella to toes are like ice. My last consult by pain specialst reports lower limb is 3.5 deg colder. . also i do have sensitivitey some days i can't wear my compression bandage to keep swelling at bay as it too uncomfortable . My neurologist has told me this cold type CRPS is far more serious than the hot type CRPS .. . hearing that and the fact that i can no longer work in my normal employment owing to discomfort when standing for long periods of time has tipped my life upside down. My life style in work and play is also effected.
    So sorry I have RSD cold as well just had SCS put in literally still recovering but couldn't take the pain anymore diagnosed in 2011 hoping this helps

     
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    Old 02-28-2014, 08:17 AM   #11
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    Re: Cold RSD, long-term

    Thanx for your reply. I hope things will improve for you in time. I have been applying a topical cream over this past week that was prescribed for me which has Ketamine included . I am told there has been positive out come from this treatment.. I also change to Gabapemtum next week .Lyrica does not agree with me. side effects are extreme ,Its bad enough dealing with this rechid condtion with out added nightmare ! They are speaking of ne having another procedure with botox in spine in April, this seemed to work for me in parts last year/ Take care

     
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    Old 06-11-2014, 11:06 AM   #12
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    Re: Cold RSD, long-term

    I got RSD 4 yrs ago after having 2 hernia surgeries! It started on both sides of my groin & my inner right thigh! It has since spread down my right leg into my knee, up around my right hip & into my lower back on the right side. It has progressed through my groin to the point that I have trouble even passing urine when I'm in a flare up. I assume that mine is the Cold RSD, the Dr,s have never mentioned hot or cold. I'm not always sensitive to touch as some of the people describe & my clothes don't bother me all the time, but I have spells that are worse that is when my clothes bother me. Like cj4426 I am sensitive to bumping or scraping against things. I also get cold in the affected areas, I have pins & needles, I get stabbing pains, & it feels like I am ripping or tearing open, too! I have many different pains in these areas. Then there these spells of weakness in my arms, hands, & legs that come on & last anywhere from a day to a week. It can be very hard to describe to people that don't know what we are going through! I am in pain every day. The meds only help take the edge off so that I can function. I am on Gabapentin, Hydrocodon, Flexeril, & Xanax. Before RSD I was Very active & in excellent shape, but I can feel myself going down hill! I get out & push my self to do things, I have too I have a wife & kids. I can not work. That has been one of the hardest things to deal with mentally! It took a couple years to get disability approved, but my wonderful Wife has a good job & carried that burden while I was waiting. I only knew one other person that had RSD & he had it 10 yrs before I found that I had it. He talked to me when I got the news & tried to help me feel better about it, but I watched him go down hill quickly! His heart was even being affected. He passed away over a year ago & the Dr's tell his wife that it could have been the RSD or an underlying condition that was masked by the RSD. I never know how I'm going to feel from day to day & after seeing what he went through I get scared about the future, but I try to not think about it, too much. I try to just take it one day at a time. I try not to show the pain to others. They see me walking with my cane & know that I was very active before, but still look at me like they don't get it! Sorry if I am rambling! I'm just getting it off my chest! I keep looking for hope. I'm glad to see that some have found treatments that help them.

     
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