I know I have talked about symptoms elsewhere from the original site of injury. I was just wondering if anyone else has had these symptoms because my are with me all the time now, well since last Tuesday and I had one good day on Friday when everything was there but very mild and manageable.
Symptoms of
- burning with touch or movement or pressure;
- pink skin blotches coming and going on palms, face and feet, I mean like Deep Red or Purple and you can watch them start and get worse because it burns so intensely and if you touch it it feels really really tender;
- If pressure is added and held to any one spot, like sitting in a chair, the place where the pressure is added becomes a deeper burn or throbbing ach with a cold burn;
- Inability to tolerate wearing some clothing that presses against the skin, like a bra, or elastic band at the waist-line or wrists because of the burning pain it causes. Kind of like having a really bad sunburn and putting on a polyester shirt.
- Really bad aching or pain in one particular set of joints but no others, mostly if pressure is applied. Like in my wrists, I can barely open a can with a can opener or pop-top, pick-up my cat, etc. Almost a constant now.
- Heart racing and inability to sit still, yet heart is not racing because you are moving around. Kind of like an anxiety attack but breathing is still fine.
- muscle spasms in the neck, shoulder and arm that sometimes produces a coldness up the outter part of your forearm up to your baby finger.
These things tend to be less irritable in the morning and much worse in the evening and at night. They may come and go during the day, depending on activity. I have been having these symptoms over various parts of my body as mentioned above. I do see a Neurologist next week and have had one doctor say it is definately nerves but has never seen anything like this before and, he thinks, is definately related to my original injury in my left ankle. These symptoms carry over my entire body and I cannot scratch any surface of my skin without getting a really bad burning pain from it.
If you know anyone or you, yourself, have experienced this please help me out. I am a little freaked out these days about what is going on.
Thanks. J
Kincaid,
I get everyone of those symtoms... Everyone of them are related to RSD.. I have the constant feeling of having to move around.. The doc says they are muscle spasms.. If I scratch my arm I can feel the pain 1/2 later still.. One of test I had done while I was in the hospital was something like that.. He would poke me with a dull pin and ask me if the pain stayed at the site or spread out.. They would start with my chins.. By the time they got to my arms my chins were still burning with pain..
My hands get that all the time. They change color all the time depending on what I do.. even when I get those anxiety attacks I can feel the rush through my body and my hands will turn color immediately..
All of this is probably related to your original injury. I herniated my cervical dics.. and since then I have all the symtoms you have.. It is all related to RSD without a doubt.. Iam sure everyone on the board will agree with me..
Just from reading up on all your threads it seems to me like you are having alot more symtoms since PT... This is what happen to me.. I had to stop.. It was just making everything worse.. I started going mentally crazy.. I just could not figure out what was causing all this pain.. Thats the problem.. No pain stays in one spot.. It comes and goes.. It changes constantly.. Is this what your feeling? As time went on after 6 yrs of having this.. I have come to realize what I can and cannot do.. I still have alot of the pain.. but I have learned what makes it more intense.. You will eventully too..
I wish I could wave this magic wand for you and make it all better.. but I can't.. All of us are so differant..
Alot of pain does come in the evening. Also when I wake up in the morning my hands will be swelled up.. I usually put a heating pad on them or hold my cup of coffee.. I will have those deep joint pains.. feels like the flu... It all eventually goes away for alittle.. I have my good days and bad.. Stress is a number one killer for me.. I also get very very flared up right before I mentstrate.. I have talked about this on the board several times. I've asked if anyone has ever had that problem... It starts about 2 weeks prior.. Iam a mess.. Do you have that?
This past week I had to go to my daughters playoff soccer games.. It was sooooo cold the high 45. Damp and rainy.. I was ok standing there.. That night I started flaring up.. Two days later I was a mess.. Just some examples of what can happen...
I know its scary and also confusing.. I think and hope when you see the neuro he can help you out with alot of your questions.. How is the neurontin working for you?
Thinking of you..
Michelle1
Hi there. Thanks for being here for me, it means a lot. I wish there was more that I could do for you and your situation. Let me know if there is.
I have only been taking the Gabapentin for four weeks now. I understand it can take 6-8 weeks to show any real results. Also though if there aren't any results after 8 weeks to stop taking it. I have started Amitrptyline or something like that. Just 2x day now and said I could cut back the gabapentin, only he didn't say by how much.
I have had full-body - in so far as it affects my skin - from face to feet are REALLY sensitive to touch. Strange thing is that it is either light touch, like the brush of your shirt across your skin or with pressure. It is mostly my arms and legs that are really sensitive but my back, shoulders, stomach tend to burn quite a bit, even without touch. My neck is making me crazy today, along with my face and head! I couldn't brush the hair off my face because it would burn and then BURN. My face, straight up the middle is mild to extreme with burning. But my neck is the worst, both sides today, muscle spasms and cramping. I really don't get it.
My PT today...just go with me on this, yes I HATE it there and think they are not really doing anything for my real benefit, I still have to go while other things are in the works. I still have to keep that income coming in from the WCB cheques, plus my CM seems determined to get me the right treatment.....SO, today I am there and ask, heh, what do you know to do about the burning pain because it is really bad in my neck, face and head, so much so that I am having a hard time putting my hair in an elastic. I got, well you know what to do...give it what it doesn't want and that is to keep handling it and touching it, if it gives you pain, give it back......I am tired of this game with her....she said, honestly I have never seen anything like this before or this bad for anyone. I don't know what to do....YEH!!! but Great! Now what?! Well, I see the neurologist next week. I just have to stay focused on that and see if I can get him to suggest some things for my PT program....Oh that reminds me. When I was in my educational session I sat next to a guy, started the same day as me, has nerve damage in his arm. He was sitting there with a soft bristle brush and going over his hand with it. I asked him who, what, why he got that? He said it is part of his desensitization treatments, that his doctor ordered it as part of his treatments. Maybe that is the key to getting them to do things around there? I was a little upset by this but my PTs were gone by the time I got out so I couldn't ask them about that. I think also, part of my problem with my program is that I don't have a doctor to have a say in my program or progress. And that I haven't seen a doctor, one that can influence anything, about the things that have gone on since my initial diagnosis a month ago. It really is crazy that all of these things that are happening to me are happening so quickly.
I totally know what you mean about the delayed sensation of things. I don't understand that at all. That is why when I went to the hospital on Wednesday last week I was in SOOOO much pain because it all just tends to build up to the point that your entire body is in agony from head to toe! It's all crazy. I am also starting to notice my moods and emotions are being affected. At least I know what to look for there.
Anyway, I gotta run, not literally, that wouldn't be fun.
Hope you have a positive and pain free night. Until I talk to you next time. J
I cannot scratch any surface of my skin without getting a really bad burning pain from it.
Oh I know this one well! I hate having an itch anywhere cause if I try not to scratch it, it gets to the point I have to itch cause the urge gets worse. While I itch a spot I feel burning under the skin and it burns for a bit for awhile after too. On top of that because the skin is thinner than it used to be I leave behind these awful red marks from my nails. Looks like a deep red rash but in lines from my nails. Depending on how hard I itched, it can stay there for up to a week or so before fading away.
For most of the other things you mentioned I don't have any experience with burning so badly. I didn't start with touch sensitivity just to air. The only touch sensitivity I deal with now is if my pain goes up on me. Then I can't be touched and it lasts until my pain goes down again or I get it under control.
The joint ache in just one joint I deal with all the time. One knee or the other can be aching and hurting while the other is fine, then they'll trade off. Other times it's one elbow or the other or one wrist or one hand and fingers, etc. In the morning when I get up every bone and every joint in my body aches and hurts so bad. It's hard to wait for my med to kick in and calm it down.
Michelle, I know what you mean about worse symptoms at that time of the month. I've dealt with it since I got RSD. I noticed right away that a week to 2 weeks before it started that my pain went up, I'd ache more, I sweat worse at nights and my body temp seems to be all over the place all day as well. Particularly at night I start feeling overheated and have to put the a/c down to like 65 to stay cool enough to where I don't feel sick. That's another thing with heat since RSD. If I feel too hot or I go outside and it's really hot I start feeling sick and just need to lay down and get cool as quickly as possible. The symptoms continue through my period and will begin to calm down a bit in the week after it's done.
Wow. I get itches but I can't stand to cratch them for any period of time. That's crazy! Most of the itches I want to get at are on my head because of the tingles. My head and face are really bad in the more, head seems to be all day though. I feel for you Karen.
Sometimes I really hate being female. I haven't had the opportunity to notice these things really. I haven't had symptoms this bad for all that long. I will definately look back in my diary to see what the pattern is. Thanks.
You know what I think are my two biggest hate-ons to all of this are, not being able to wear my bra without discomfort, even without it I get discomfort because of the rubbing of my shirt, and last night I totally forgot about my face when I went to bed. So I rolled onto one side, arranged myself to be as comfortable as I could be and then went to snuggle into my pillow and BURN BURN BURN!!!! FRIG! I thought my sheets were soft but apparently not soft enough. Good thing I have a very fuzzy soft blanket on my bed. I pulled a corner of that onto my pillow and put my face on that. It works pretty good or, at least, good enough for me to manage what was left of the burning.
Really not sleeping well these days. The pain in my lower left leg (original site) seems to be more pronounced at night and in the morning, early hours of the morning. I am also noticing my neck is getting crazy with the cramping. I checked my forearms and around my wrists and elbows this morning. The meaty part at my elbows are definately tender and with my wrists I can press on them top or bottom and they get irritated and start to burn. I am starting to wonder too how much of the burning in my back and shoulders isn't due to muscles because I think my back is quite notted these days and it wouldn't suprise me. Yet, it could be that my nerves are causing the muscle tension, who knows? I don't know what to make of anything anymore.
I really just need to wait and see what the neurologist has to say and see my regular GP this week to ask about maybe doing a couple more tests. I don't think they tested for Diabetes. I want to ask her about Fibromyalgia and I am seeing her about the results of my other blood work, namely my thyroid. I want the works done. I am also going to ask her about those lidoderm patches but where to put them?
Thanks you two. It means a lot to me to know that I am not the only one going crazy sometimes.LOL. I mean you keep me somewhat sane. Thanks....J
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