[Kyzyl363]

I had come across a posting through google about someone who has had symptoms in other areas of his body. I think it was Can RSD spread or something of the like.

I am experiencing many similar symptoms to him. I started physio this week and have had more flair ups and am more chronically sensitive and burning all the time now top to bottom. I did have symptoms of the burning, aching, throbbing, hot/cold fingers and toes. If I grab my arm it is a bit delayed but I end up getting a really deep throb and almost like a deep heat burn. I can barely stand the feel of my own clothes on me, anywhere. I had suspected my one leg was mimicing the injured leg and for the most part has been but has come and gone, same with my arms. All symptoms came and went but then I started physio and the burning is body-wide and the aching throbbing pains in my arms/wrists is getting more frequent. It isn't like I have to do anything to bring this on now.

I just wanted to see if that person was still around or if there are others experiencing the same type of things. I am not saying it has spread, though I thought it is, but now am just saying I don't know. They are very similar pains and I can't explain them. I did see a doctor who believes that it (the reaction over the rest of my body) is a result of my initial injury. He said that my initial injury is somehow causing the rest of the nerves in my body to misfire. He didn't know why and has never actually seen this happen before but also said it didn't mean it wasn't.

What have other doctors said about this? Did anyone actually have a doctor give them reasons for this happening? How many others here are suffering the same type of symptoms?

Oh, by the way. Hi to everyone.

[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

[ali12]

Hi there,
I am so glad that you saw a nice doctor - that is really good. My doctor is not very nice, we are trying to get a referal somewhere else.
I am glad that your pain went away for a day or so, but I am sorry that it is coming back again (((hugs)))
As for the treatment, every doctor is different. Some doctors just want to do Physiotherapy, some want to try medication (for example, nerve blocks, morphine etc) whilst others like to do both. My doctors piut me on medication and I see a Physiotherapist once a week, what medication are you on?
Many people find it difficult to do Physiotherapy without something helping their pain. I have not found a medication that works yet.
I would have a word with your Physiotherapist, tell him/her that the excersises you have to do hurt you a lot. Most of the tasks I have to do hurt a hell of a lot!
Have you thought about seeing another Physiotherapist?
RSD CAN spread, the RSD spread from my foot to my arm, and many people I know have full body RSD. Your Physiotherapist sounds like she does not know what she is talking about. Just because you don't have the typical symptoms of RSD does not mean you don't have it!
Take care
ALISON

[Kyzyl363]

Thanks Alison,

I really don't like the place I am in physio but I don't have a whole lot of choice because this is a WCB claim. They call the shots. My Case Manager is incredible and supportive but has discussed several things with my PTs and seems to think they do have enough experience with CRPS and I just need to trust them. I asked her why then, given my condition, is desensitization not even on the map? She thought that was a good question.

I really hate my PTs. I know they are just following the program they have been told to and are doing what they know but it just isn't working for me. Yet, it is just too early to say one way or the other. I am just waiting things out until I see the Neurologist and find out if I qualify for this other clinic. At least at the other clinic they have a whole team of specialists - pharmacy, physiotherapists, anasethiasts(can't spell - the person who does blocks), etc. Plus they have an area for those people who are in the trades and all the tools of the various trades so as to incorporate the use of tools and activities into your daily routine. I do have to admit that I am really nervous now about going back to work in my trade because stupid accidents, minor ones happen all the time and I am afraid if I get this into remission and go back to work it will come back and I won't be able to get rid of it again.

Of all things this is the one thing I did not want to hear that I had. No one does. I am just scared all the time because more pains just keep getting added to my list. I am confused as to weather they are real half the time or not because they come and go. Then I go and do something like put my hand/arm behind my head and then my arm starts to burn. I keep a journal of all the symptoms/pains/experiences because it is hard to remember pain when it is inconsistent or you have to move it or be doing something or it isn't the same all the time.

Getting back to my PTs. I have told them many times that certain exercises cause me pain in both my wrists and ankle or that lying on my back causes it to burn worse. They just tell me that I need to learn to get past that. That the only way to deal with CRPS is to do to it exactly what it doesn't want so it is going to be painful. This is what I am dealing with and just have to get through for now. Also I can't take my meds when I go because they make me soooo groggy and out of it. I have to drive about an hour to my PT place. They tell me that it is a bad idea not to be taking my gabapentin because I need to get that build up in my system. Sure. Okay. So what do I do? Allow myself to drive while under the influence, so to speak? They say they care but don't offer any real solutions. When I told her how much pain I was in on Wednesday, I mean it was REALLY OVER THE TOP BAD, nothing like I have EVER felt before. I was told, well when it is really bad you need to come in because we need to see so we can help you. I went in. I told the one how bad I was, boarderline tears, and she told me well you just need to try and do what you can to get through your exercises. I tried and I cried and I tried and I cried. There was no offer of support no real concern until I put on my things to leave, I was leaving early, and she said 'let's talk'. Okay, I was told that leaving early wasn't a good idea because I really need to do what I can to see these things through when it gets tough. I said you say you care I am in pain and throw around 'pain management' all the time but here I am in pain and told to tough it out. I don't see anyone offering to help me with it or through it, the day before I was in agony and I couldn't find a therapist around to help me nor a doctor! She said well they can't be around all the time and was very sorry about that - okay whatever. I am not up for apologies or excuses because it was my SECOND DAY and she should have known that the first week is the most difficult for people and that maybe sticking around to make sure they are okay would be the right thing to do. We are merely cogs in a wheel making our rounds through the system. She told me that she 'understands that I am upset and that the pain is not allowing me to be myself' (I can't believe I fell for this at the time. I think I just wanted to get away from there and go to the hospital.). That she wants to help me become the person I was before all of this.....on an on. I am cranky again. I don't want to talk about them anymore because I am trying to 'trust' them and the program they have set out for me. Not that I believe it nor really trust it. I am just waiting out my time until I see that Neurologist. I told them that if I didn't have pain and could get a boot on I would be back at work and not here, especially since they have nothing new to offer me in the way of this condition. URGH!

Going now......talk to you later. J