A Pain Survivor Community
Just wondering... Last month I got my flu shot. And my Tetanus. The Tetanus devastated me or maybe both. All I know is that the area where I got the T shot is still hurting. And today I am getting twinges of pain there. Is that possible for it to be related to my RSDS?
I also notice that areas that get twinges/zaps (as I call them) develop into tender areas as if someone bruised me bad - whole areas of my calf, along my leg, and now starting in my arm. Yikes!
Just had an experience in trying to get a myelogram but because of my topography of my back and spine - it was not possible to do. So in F/U with my MD, he said at this point management of pain with my new pain md is the only plan. The test was to evaluate nerve situation in back to see if part of my problems are from nerve compression or movement of structures or impingement of my hardware. These were issues my other ortho MD strongly thought were a possibility.
I am also having issues with sleeping. Once I lay down, every joint and muscle in extremities get real stiff and hurt so I don't move much at night and I don't sleep well. Vicious cycle isn't it? Not only do they all get stiff and hurt, but my feet and calf disappear. So I have to remember to sit up in middle of night or early early am to dangle my hurting feet/leg over the side to reset the start of that.
Does anyone else have issues with the texture of their sheets and other smooth surfaces that their skin comes in contact with? Sheets, pillow, the side of my bed, floors, things to sit on, etc...
I am not quite sure if this is what you mean by "issues", but I think it is at least somewhat similar.
Let me preface my situation by stating that the majority of my RSDS is confined to my left leg, especially the ankle and foot. During an escalated ambient pain level, I often find myself sliding my leg back and forth across a body pillow I use to elevate the whole leg. What would seem, to the uninitiated, as a sleek smooth sensation, does cause a sparkling zapping feeling, similar to the discharge of say static electricity from pulling two socks apart fresh from the dryer. The immediate result is a soothing feeling, probably mostly derived from a distraction or overriding the nerve with "fast" transmission impulses from the tactile response of sliding across the soft pillowcase. However, after as little as a minute into it, the relief turns sour and the amped up pain that caused me to do it in the first place becomes even worse. And a cycle starts, I often catch myself sliding my leg without realizing that I am doing it. It is like a nervous twitch response, but the jump in my ambient pain level snaps me out of it.
I am so sorry that you are having to deal with so much pain. I, too, have CRPS (aka RSD) as a result of a work-related accident in November 2006. This crazy disease has taken over my entire body and I suffer with a great deal of pain.
In reading your post, I notice that you have issues with sheets, etc. Personally, I cannot sleep with any sheets, blankets, or basically anything resting on my feet as it feels incredibly heavy ... like a ton of bricks are resting on me. Even wearing socks causes a great deal of pain for me. I haven't quite figured out how to deal with the sock issue, as I really need to wear them now that we are in the cold winter months. But as far as the sheets, all I can do is to pull them back so that nothing touches me from the knees down to my toes. And speaking of the cold winter, I suffer so very much in this type of weather. The cold goes right through me - straight down to the bones. Unfortuantely there is nothing I can do about it, other than wear my Cuddle-Duds (women's thermals) and basically I just try and stay as warm as possible. My husband would love to move to a warmer climate, but I just cannot seem to move away from my family and my friends. I need them with me, especially at this time in my life! So I just hibernate and try to stay as warm as possible ... just waiting for the spring thaw!
I wish you much comfort in dealing with this terrible disease.
what are cuddle duds? don't your feet get cold? mine get so cold. I wrap them up in a 'prayer' shawl a friend made me. I have to cover the bed so no part of the smooth or wood or anything like that kind of surface is ever near where any part of my body would touch. So strange. Even the areas like my arms that aren't affected... So hypersensitive. Yeah, I can't wear socks either. Makes it difficult in the winter, doesn't it. Even worse when the snow is deep! Then there is the flip side - the horrrible heat of summer. The heat makes my feet burn up like the sun. There is no way for us to win, I guess. My fortune cookie said it best today: The fastest way to to find something you've lost is to replace it. I'm hoping for new feet or nerves :)
I have a difficult time with socks also. Something I have found that works for me, is an ankle length or no show sock with the highest cotton content you can find. Before putting them on, I stretch the sock out, especially the top. the high cotton content expands without an elastic effect of a manmade fiber. This gives me the least amount of problems. If I wear any type of 'normal' length sock, my leg will swell up exactly to the top edge of the socks, and turn all shades of reds, purples and the pain will last long after I would take the socks off. With the stretched out low socks, I have much less trouble, and at least have a sock between my foot and shoe. I also have had sporadic outbreaks of eczema on my feet since I was a child, so not wearing any sock would open up a whole additional realm of pain and discomfort.
As for the cold, I relish that, as it the one thing that soothes the pain. I have never had any success, or even tolerance for any type of heat or desensitization therapy. But a tub of ice water for my feet feels incredible, at least for 10 mins. anyway.
I actually like taking out the trash. Stepping outside barefoot, the snow, ice or just cold concrete of the driveway, feels equally soothing.
I have recently tried something new to help with the sock issue ... my husband is a diabetic and he has special socks which are very loose on the top - there is no elastic band around the top to cut in. They are made especially for diabetics and are made of 100% cotton. We have purchased them at Walmart and Target, and the cost is pretty reasonable. Hope this will help you!
Cuddle Duds are women's thermals ... they have both tops and bottoms. They fit close to the body so I can wear them under my slacks. I recently purchased a few new pairs from JC Penney - I went on-line, found what I wanted and then placed the order. I am not able to go shopping in the larger stores, so I do alot of my shopping on the computer. And yes, my feet do get cold! But I have recently found something new. My husband is a diabetic and he has to wear special socks so that they are not tight around the calf area. They are 100% cotton, and so far, they have been working out ok for me. The hypersensativity is terrible. I suffer in the summer, as well, with the heat and humidity. Thank goodness for central air conditioning! The best times of the year for me are the spring and fall. Otherwise, I find that I am forced to stay inside most of the time. And rainy days ... forget it! This is a crazy disease and I had never even heard of it before my accident. I have done quite alot of research just trying to understand what is happening to my body. Very scary. Anyway, I really like what your fortune cookie said. Ithink I would hope for an entire new body! LOL!
It was nice to hear back from you and I hope you write again when you have a chance. Take care.