[ali12]

Hi there
Welcome to neurotalk.
Please let me introduce myself, my name is Alison I am 12 years old and I suffer from RSD in my left leg and right arm (although my arm is getting better )
I first developed RSD in my leg on the 16th March 2007 after an ankle sprain, I was diagnosed 4 months later.
I was then prescribed Amitrpityline to try and help me sleep, but this caused severe blurred vision and resulted in a fall in the bath, I developed RSD in my arm.
RSD can spread after an injury, if you think that you suffer from RSD in another area contact a neurologist / PM doctor they can diagnose you. It does sound like you have RSD in other areas. Do you suffer from colour changes? Physiotherapy can make your pain worse.
If you suspect RSD, then please start touching your body with feathers etc, this will try and stop the limb from being hypersensitive. It might work but then again it might not. I have tried it for several months now and it does not seem to help me.
Mirror therapy might help you too. If I was you I would talk to you Physiotherapists about your problems.
Please keep us informed on your progress
Pain free hugs
ALISON
IF YOU NEED ANYTHING I AM HERE AND WILLING TO HELP, I KNOW HOW YOU FEEL AND HOW BAD THE PAIN IS.

[dreambeliever128]

What I noticed when I first started PT is that my RSD flared up more but as time went on it would calm down after sessions.

You didn't say what treatments you are having for the RSD. For me the blocks helped put mine into remission. I also spent a lot of time in P. T. Also I had triggerpoint injections and am on Methadone.

Others on here will come on and give you some good help. A lot of us have the same story.

My RSD started from a Thoracic Outlet Surgery or at least was diagnosed after it. I believe I had it before the surgery from falls I had. The worst is in my right arm and hand and pelvic area.

When you talk about it mimicing the other side, I think you might be talking about mirroring. I had that to happen where the left side was the same as the right. It came and went. What was so wierd is that where it was the worst in the right arm and hand it was that way in the left. I guess that's why they call it mirroring.

It can spread on it's own. I was basically in the same shape that you are in when I first started. It was all I could do is to keep from killing myself over the pain. I went into councelling and my Councellor/ Dr. saved my life. He kept me going until we got me to where I am right now.

What Drs. do you see and what are they doing for you? I am not trying to be nosey but a lot of people can help more as they know more.

I'm glad you found us and I do hope that you stick around, you can learn a lot to help yourself from the good people on this forum.

Ada

[Kyzyl363]

I had written a really long and detailed explanation of things that have gone on lately and for some reason it didn't post. I am too out of it right now to post all that again.

But I do want to say thank you for your openness and support. j

[Imahotep]

I've lost a couple posts too. I usually just copy them before posting now so can paste them if they don't appear.

Welcome aboard.

[Kyzyl363]

Okay, so here we go again....I will copy it this time, thanks.

So I originally rolled my ankle and strained my nerves in my foot, though no one and nothing was saying anything was wrong. The original injury was just over 2 months ago. After about a month I got a case manager for my WCB claim. She got me an appointment with a doctor and he diagnosed it as CRPS - temp diagnosis until more testing complete. I then went for an MRI and Nerve conduction. I recently got blood work done and everything is saying, nothing is wrong. So the CRPS stands. That is for my left ankle/foot. So a week or so later I started getting similar pains in my right leg/ankle/foot - by the way my original injury spread up to my knee on both sides of my lower leg and then the outside of my leg up to my hip - Actually that pain would totally mimic at first. Then I started getting pains in my right foot/ankle/knee/leg regardless of what was goin on in the other one. Only when it seemed to be acting up could I put pressure on it to see where/what areas where actually irritated or sensitive. It has all the same as the left. The pain and burning and whatnot just came and went, nothing consistent. Then not long after that, both my arms started on fire from the forearm down to my finger tips. It was really weird, all sorts of shocks, tingles and my wrists felt like they were going to snap backwards off when I put weight on them. There was also a horrible aching throb that went on. Over the next couple of days it seemed to be more frequent in my left arm. Then my right arm would hurt more than my left. This is really all within a matter of days of each other.
This week I started physiotherapy. First day was fine, rather simple I thought. Sure I will probably ache tomorrow and my mucles will be a little sore but no one told me what I could possibly expect of it in reality. Day two. At first I was okay then we introduced some new exercises. That is when things started going hay wire and extreme pain was slowly coming on. Just over an hour later I had a major flair-up going on. I had never had my whole body act up all at once like that. I burned BADLY everywhere. I went into the washroom to splash some water on my face and I had a bright purple patch on my left cheek! Never happened before. My palms were also bright red with white spots everywhere and from my knuckles to finger tips they were purple. I was freaking out. I went out front and walked around looking for someone to help me understand what was going on and to see what was happening. NO ONE!!!! Anywhere! I was in the twilight zone. I went back to the washroom and tried to calm down....the rest of the day went on. I calm down a little but my whole body had this undertone of burning pain and little lightening strikes.
Day three. Pain was horrible burning everywhere and my clothes were getting to be too much to tolerate. I ended up leaving PT early and went to the hospital. The doctor gave me something to help my body relax and hopefully calm down the nerves. I slept for three hours (it was delightful!). When I woke up I could still feel my nerves burning but I somehow felt strangely dissociated from them and that I could manage with this. He wrote me some prescriptions - Amitriptyline, to take at night and if it works to cut back on the gabapentin, and Clonazepam for emergency backup (also what he gave me at the hospital). I have also taken Ketorolac (pain killer) but it did nothing and Tramadol, which also did nothing to help. I actually had more pain than I have ever experienced with that one. It felt like someone hacking away at my legs with a dull knife. I won't take that again.
I only recently got an appointment with a Neurologist. It is for two weeks from now. I am looking forward to it. I don't have anyone right now that knows enough about it to help me with the pain, medicinally anyway. My GP said she can't treat me for it because she doesn't know what it is or how to treat it and won't prescribe things for me without knowing how to treat a condition. I understand and appreciate her position. She is the one who suggested we try gabapentin though and will continue with that.
My CW is trying to get me into a clinic that specializes in CRPS treatment and Return to Work programs. I like the looks of it but have to qualify first. If I don't qualify I go into a more comprehensive treatment program where I am at now. I asked my CM if they could at least incorporate a desensitization program, preferrably one that doesn't use hot/cold or ice compression. I also asked if she could find out why it isn't part of my current program, given what I have I would have thought it part of the program from day 1. Anyway, PT is a whole other issue. I am just doing what I am told and hope things don't get worse than they have already been made to be.

To answer some of Ali's questions:
While I am a little stiff, I have full range of motion in all my limbs. I have seen people with locked up limbs so I fully believe in keeping things moving even if it hurts a bit. So far, I don't know if I am totally convinced that keeping moving prevents things from pulling inward or getting worse. At first my toes got really cold, or got cold really easily and it was hard to get them warm again. Then I seemed to have really warm toes and felt like I was sweating on my feet and between my toes - gross but hey. With my hands my fingers get really cold, even though the rest of my hands are warm but then they also flip to really warm. They have been changing back and forth from purple finger tips to feeling like sausages that are pink and when I try to straigten my fingers way out they go white. The palms of my hands tend to get red with white spots. The doctor check my circulation and said, there is nothing wrong with my circulation, well that is outside of the normal range but it also does respond to pressure on my nerves.
Otherwise I often experience tender spots that are fairly consistent. Burning everywhere - back, shoulders, arms, legs, stomach, butt. I have also noticed that my fingers are showing dry patches are severe burning on those spots that are redder than others. At first when I saw the doctor that said I had CRPS he pointed out how my skin on my foot was shinny compared to the other one and that the skin was drying out in patches on my left foot but no on my right. Now I am also noticing my nails have lines under/in them on a couple of my toes. As for sensitivity it seems to be more to pressure and to light touch, except when it gets really bad. Then my clothes feel too much for me to tolerate. It kind of feels like getting a rug burn every time my clothes rub on me. Otherwise it kind of feels like a really bad sun burn. I also find that since every other place has become my sensitive that it actually is WAY more sensitive than before and is more so than more original injury site. Strange!

To answer Ada:
My PT consists of 20 minutes on an inclined bike and stretching exercises and a half hour of education/information session about diet, relaxation, etc. This is a 5 days a week 4 hours a day program. Once i have completed one cycle of my exercises, I am to keep repeating them until I have gone through my 3 1/2 hours. I am also have meetings with my therapy team to discuss issues or I may have psychologist meetings. Next week I get to try hypnosis as a means of relaxation and maybe to help me sleep better at night. I said I would sleep better at night if I didn't have PAIN that woke me up and if I didn't have MEDS that had those side affects! Funny, during the day I can't take my gabapentin because it makes me so groggy and the one I am suppose to take at night is suppose to help knock me out, unfortunately, hyperactivity can be a side effect! YEH! As for meds I listed them earlier and I don't have a doctor to go to on a regular basis at the moment but that is what the Neurologist is suppose to be for. The people at the hospital couldn't believe I was in physio without a GP or Neurologist overseeing my PT program/treatment.
I gotta run...physio you know. Have an up day! J

[ali12]

Hi Kyzyl363,
I hope you are feeling better today.
I am sorry about the tough time you have had with CRPS.
I suffer from CRPS and another disease called Dystonia, which causes muscle spasms, locked limbs, movement problems. Dystonia happens as a result of RSD and many people suffer from it. Keep moving your leg, I know it is really hard and painful but you don't want to suffer from Dystonia too, once you have dystonia it is hard to cure, only 25% of people with dystonia make a full recovery. My left foot, which as RSD is currently rotated out to the side and I can't move it at all.
Your hand sounds like mine used to be, I got changes of colour, swelling etc. My leg is MUCH worse, I did not have the hypersenstivity in my arm. My leg is really painful and I have changes in colour (eg, red, blue, black, yellow, mottled), muscle spasms, hypersenstivity, severe swelling (my doctor says it is the worse hes seen), temperature changes, toe nail changes (I get ingrown toenails a lot), dry skin etc etc.
For the dry skin I would get some cream from the chemist, it WILL be painful to put on but it does help.
Please let us know how you are getting on. If you want to talk I am here and so is my mom.
Pain free hugs
Alison
-x-

[Kyzyl363]

After being at the hospital on Wednesday and seeing a really good GP the burning pains in my back, legs, butt, shoulders, stomache,etc. all seemed to be getting less and less painful. My PT GRABBED my bad ankle and it HURT but not like I couldn't handle it. I don't know if I was just learning to manage really well or just that out of it, because I was out of it. So, yesterday and I was doing pretty good for most of the day. My original injury foot hurt but I was walking quite well and only my left wrist and back of hand was ultra sensitive and bad with burning. Today, however, everything seems to be slowly coming back to life - my back, shoulders, neck (which I forgot about until today), arms, wrists, hands, legs, etc. I have had a couple of incidents with nerve shocks in my face and top of my head. I think my nerves are just out of wack and it may not be RSD outside of my lower left leg. I am not committing myself to that diagnosis until I can see a doctor that says something. I did see a really great doctor at the hospital on Wednesday and he said that what I am experiencing in the rest of my body is definately related to my original injury but simply said he doesn't know why the rest of my nerves had gone haywire and are misfiring. Neurologist appointment is Nov 20th. Looking forward to that.

I do have a question though. What is the typical structure/pattern for someone with CRPS/RSD for treatment? I am curious because I am expected to do PT, just the same as someone with an ankle injury (I know because there are other people there that have the exact same program as me) and even more because I don't appear 'that bad off' as others they have treated. Plus I am having a struggle with them to acknowledge working with the other areas of my body that are in pain, namely my arms/wrists/shoulders/back. I have to do exercises that require me to grab and hold my ankles, which hurts both my wrists and ankles. Also lay down on a matt, which bothers my back. I feel FUBARED! They just say that the only way I am going to get rid of RSD is to grab those areas and make them uncomfortable, make them do what they don't want to do, or give them the pain they don't want to feel. She said "the only way to deal with CRPS is to give it what it doesn't want and that is touch and pressure and cold and whatever it takes to make your brain understand that what you are feeling is not actually pain". I am FREAKED OUT by this woman. Okay, I agree to some extent but being brutal at unexpected times, like when checking my knee to see if there is any swelling or movement issues, GRABBING my ankle. Oh, and telling me that she is really impressed with my ability to manage this pain, I was TOTALLY out of it because of the drugs from the hospital combined with my meds, that I am progressing so well in such a short period of time ------Okay, First. I never had the pain like I have had since I started here, I never had my entire body flairup like that before PT. Second, I was totally drugged up. Third, my sensitivity is strange because in the various areas of my body it comes and goes, plus it has mostly been with pressure to my nerve lines. URGH! She doesn't know what she is talking about because she hasn't actually taken the time to LISTEN to what I have told her. She has spent more time telling me that the symptoms I have are not normal to CRPS and that maybe I didn't really have an ankle sprain because I didn't start to swell until 2 weeks later and it was mild. I only actually started to get sporatic swelling in the last week or two. Oh, and she said CRPS Can't spread. It is REGIONAL only! UGH! I really hope I can get into this other place. I don't want to have to stay at this place. The only meds I have taken for treatment are those listed in my previous posting.

Anyway, back to the original question. What is the normal or experienced treatment plan for those with CRPS in its milder form or early stages?

PS. Thanks for listening and I am really sorry we have to meet under these circumstances. To better days. J