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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 11-05-2007, 03:58 PM   #1
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Red face What is up with PT?! URGH!

So, okay went to PT today for the first time. Had a meeting with them.

I have dealt with the one that did my functional assessment. She seems fine. No problems there. She wants to get all of my body moving, stretching, working. Okay, no prob. I really am stiff and have never felt this rough before. Knew to expect that. I think I will manage for the most part.

The other one. She tested my ROM etc. Okay. Asked me to explain my symptoms to her. I told her that my right leg isn't too bad today, kinda comes and goes but the sensations are all the same as in my other/bad leg. Too much walking and I do feel it in both legs for a couple of days. Also, can't touch either one. Funny thing is that my right leg is acting very similar to the way it oneset in my left leg. At first one minute it hurt and the next it didn't. Now, a couple of weeks later it is a permanently felt pain to touch/pressure (my left leg). I am just waiting for my right side to settle into the same thing. As for my arms, both started one day - burning pain, deep aching, hurt to grab it, which lasted for a few minutes, getting worse with time and then disappears, except the burning. Same thing as my legs. My arm will just ache and throbb. I will get a tingle and a burn up the back of my hands to my finger tips. I also feel it in my back a bit like a burning string placed up the one side of my lower back. When it is acting up I can't lay down or touch my back to anything because it burns worse, which turns into an ache. Comes and goes though.
I was told this doesn't sound like CRPS. It can't spread. It doesn't happen this way. What are you doing to bring this on? You must be doing something... You don't have any hot spots that I can feel right now. There doesn't seem to be any real swelling anywhere....I told her yes it can spread, as to weather it actually is in me, I don't really know, like I said the symptoms are irregular. I would like to believe otherwise and maybe I am loosing my mind. Tell me it is something else. I would be more than happy to know it is something other than CRPS. She asked if I have had any blood work done. I was thinking too many other things when she said this to ask why I would have had blood work done. She said that none of this sounds like CRPS and that something else has to be going on and that none of it sounds related to my initial injury. Oh, and then I wonder if there even was an ankle sprain initially? Or maybe you just have a really slow recovery time...from what???? I am not sure......
Things carry on....She said strength doesn't seem to be an issue for me really, I just need to get moving, maybe see that psychologist, and keep a journal of what I am eating, maybe see if they can adapt my diet a bit to help speed up or assist in recovery...sure, all good with that. Then...well I don't know what I really can do for you because you don't have swelling or anything....She did mention that she could maybe try some TENS and massage...That what it needs is exactly what it doesn't want to get it desensitized...okay, to some extent...well if there is swelling we can try shocking it by alternating warm and cold water.... ...I told her I don't think so and that just happens to be a little old school way of thinking....she said that she has had plenty of success with it particularly on people worse off than me and that she didn't know where i was getting my information from but that is how it is done and should be done....
What do I do? I told my CW about today but haven't heard back from her. Now I know the sense of frustration others here talk about when it comes to PTs and doctors and disbelievers....So, I think I am going to bring in some information for them to read...I am sure they will find contradictory information to support their views but I can try. I just don't even know where to start with them....I'm fuzzy, tired and drained from everything and it has only just begun....don't you get sick of telling people...this is how it happened...this is what hurts, when it hurts....blah blah blah....I am sick of hearing myself talk about it. I don't even want to write things down anymore...just plain sick of all of it....

 
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Old 11-06-2007, 05:42 AM   #2
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Re: What is up with PT?! URGH!

Kincaid,
I wish I had words for you.. I remember going through exactly what you are.. The frustration is horrible.. RSD is so different for everyone.. The goals of PT are to restore function of the limb, alleveiate pain, strenghten muscles and reduce sweling and joint stiffness. When I first started with PT I didn't have all of this.. Yes I had swelling not a whole lot.. It would come and go so fast.. The burning was there but not all the time.. I did have discoloration.. My muscles were fine. I could move all my limbs. See this is what confuses me with PT.. I guess there are alot of pts out there who swelling is so bad that they can't move their foot etc.. ROM is important.. but from what Iam reading about you.. You still see like you have this right now.. (which is great).. I didn't have hot spots all the time.. only when I have flare ups.. This is what would confuse my physcial therapyist.. I would walk in just telling her my symtoms.. He didn't see any of them.. Well now 6 yrs later.. They are all visable.. Not always though.. I think this is where people say nothing is wrong with me.. Just because they don't visible see them.. Iam more careful about what I do.. I know what flares me up and not.. I know when to stop.. I know when to apply heat.. It sounds to me that all you can really do right now keep the ROM up, stretchinging is so good.. and monitor yourself.. I found no relief at all from PT. I came home with more pain.. AFter seeing the RSD specialist.. He told me to stop.. If its making the situation worse then stop.. Since then I have.. What a differance.. My suggestion is to be guarded.. You know your body.. I would ask how much knowledge your PT has with RSD.. Apparently she doesn't know much.. if she suggests that RSD does not spread.. I've learned from my dr that their are different patterns of spreading.. I have what they call the mirror image spreading, which means all signs and symtoms appear in the same area on the opposite limb. This occurs in about 15% of pts. The common spread is called independent spread. the signs and symptoms appear at distant sites not adjacent to the initial site of the injury.. This occurs in up to 70% of pts.. Then you have the contiguous spread. This occurs in almost all pts and involves the gradual enlargement of the affected area.. Maybe you should bring this information to her.. LOL LOL..
What else does she feel you may have if its not RSD.. Sure sounds like it to me..
Blood work is not a bad idea.. There are alot of conditions that can mimic the signs and symtoms of RSD and need to be ruled out.. If you haven't had that yet.. I would suggest it.. Thats seems to be the only smart thing your PT has suggested to you.. lol lol
Iam sorry if Iam being to up front. I hate to see you go through this.. I find it amazing being on this board and hearing everyone go through the same steps of treatment in order to get better.. What it comes down to is.. They just don't know.. Its all trial and error for each and everyone of us.. There is not quick fix.. I have come to learn that real fast..
Are you having anymore luck with the Neurontin? How's you sleeping patterns going lately? I just feel so bad.. Just knowing what your going through.. It will be ok.. I promise.. Mentally its very hard for you right now.. It takes time to learn and accept it all.. Its so much to take in, in such a short time. All of it is so over welming.. and scary.. Just rememeber.. Not everyone is the same.. thats a positive things to look at. Don't give up on PT yet.. I think you have a great idea regarding giving her some information on RSD.. Iam curious though.. Ask her how many pts she has worked with who have RSD.. When I asked mine.. I was the second one.. That was comforting.. LOL..
Good luck, keep in touch.. My motto... Take one day at a time....
Michelle1

 
Old 11-06-2007, 06:10 AM   #3
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Re: What is up with PT?! URGH!

Kincaid - yikes! I'm sorry that this has been so frustrating for you! You symptoms do sound like RSD -and good for you on not letting the PT do the water hot/cold shock - that would be BAD!

Many doctors out there still do not really understand it at all. It sounds as though the "know it all" PT that you have would fall into this category.

I agree with Michelle - the blood work isn't a bad idea. It would give you a good idea as to if there is anything else underlying that is going on with you. I know it's frustrating and tough....for 8 years I heard that I just had chronic pain and to take some anti-inflammatorys, etc. After a lovely ulcer - I gave up on all meds for awhile - until I found my wonderful doctor who diagnosed RSD and then sent me for independent consults to be certain - and yep, all 3 of the others confirmed the RSD. Finally! I had a name to what was causing me so much pain and weird symptoms! I hope you find a good doc and some relief soon. Hang in there - and we're always out here to support you or just to listen to you vent!

Good luck and take care of yourself!

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Old 11-06-2007, 07:25 AM   #4
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Re: What is up with PT?! URGH!

I really dont like PT.... Its toture. I asked my PT girl if Ice was good for RSD and she said it was perfectly alright. Mind you, I know better I was just testing her to see what she really knew. IMO unless they prove to be knowledgable watch them closely. She droned on about what she knew and then I spewed the facts in a respectful way and it shut her up. Good luck im off to my PT session now. GRRR.

 
Old 11-06-2007, 08:43 AM   #5
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Re: What is up with PT?! URGH!

My experience with pt has been pretty good. My guy does not claim to know everything about rsd. He is learning with me. We pretty much work on the basis of, "try it, if it doesn't work for you, stop. If it works for you, keep doing it". I do different things all the time. One day something works for me, the next it doesn't. The only thing that I continue to do every day is stretching. You have to stetch out the ligaments and muscles in order to do anything. The hot and cold thing has worked for me, but that's me, not you. The idea is to break the cycle of pain or to get your system to feel different feelings. Obviously, if you can't even touch your leg, it's not going to be for you. We also did things like feathers and then something rough. If you can handle light things like a feather or a tissue you could try that. It's just to get your system to feel something different other than pain. Good luck!

Sherry

 
Old 11-06-2007, 01:52 PM   #6
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Re: What is up with PT?! URGH!

Thank you everyone for your support and advise. Today was day two.

I really wish I had someone there to give me some idea of what to expect. I thought, okay so my ankle/foot is going to hurt and be really tender and my muscles are going to be a bit tight, tomorrow will probably be even worse. What I did not expect and found no one there to turn to was a full body flair up. I mean I know that I have been thinking it was in other parts of my body but today, even now talking about this, I am starting to flair up again. I near freaked out. In tears I went to the bathroom to put some water on my face and I end up seeing a nice bright red/purple patch on my one cheak, whereas the other one and everywhere else was nice and white. I touched it and my finger spot disappeared right away. I tried the other side and it seemed to disappear more slowly, more normal. Then I looked at my hands. My palms where bright red with white spots all over and on the backside from my knuckle to tips were red/purple in color. I could barely stand the touch of my clothes on my legs, back and arms. I have NOT felt like this before and didn't know it could get this bad. Then the pain in my left foot - shooting pains and aching - got SOOO bad I could barely walk. Where were any of the therapists? I didn't know what to do or to think and I was embarassed because I was trying not to cry or let anyone see just how bad it was. I dont' even want to say anything to anyone now because I feel like a fool and it is too much to explain to someone who doesn't understand. Plus, even if my therapists were there I don't think I would have wanted to talk to them, well the one anyway. She seems to meet me half way or so I thought. They still don't acknowledge that this exists in any other part of my body so how can I get real treatment. I thought she was the one that meets me half way but this morning during an exercise I told her my wrist/arm is really irritated right now and has been since last night. I got the brush off and well, let's get back to the exercises here. I have to leave soon.

When I went in this morning I told her I had some information for them. I spent a portion of last night finding specific information from all the National and International organizations for RSD/CRPS. I wanted to print off information that covered those things they have been telling me that are contradictory to the information I have been reading like the fact that gabapentin can and does make many people with RSD drowsy, etc., that RSD does and can spread, even over the whole body, granted it is rare but can happen, that cold is not to be used as a treatment on RSD/CRPS pts, etc....So, I said this is just some information that 'I' have been reading and I just wanted to give you an idea of where it is 'I' am coming from, especially since these sites have been my only source of information in addition to my online support group. The response was, well first, I applaude your efforts and interest (treading carefully here(her)) you need to take these 'STUDIES' with a grain of salt. Okay, I know that...I do have a degree, I am not an idiot and no these are not just some studies (not that I said that but it was what I was thinking). She continued....these are merely studies and you really can't go from them. What you need is to be here (at my PT place) because my PTs deal with real people and know what is best for me....end of conversation and on to let's get to your place of work....now I am groaning.
My place of work requires steel-toed boots. She suggested we walk around and see what my job entails and what there is I can do. Sure, great. So, about those steel-toed boots. I know they have the little cup things that go over the end of your shoe. She responded quickly, I have a pair, not to worry! Great but if I COULD get MY foot into a pair of boots 'I' would be AT work and NOT here!....Oh, okay. Well maybe we could just meet in the office and review what your job requires, etc. Okay. Sure. So, they have desk work for me, as far as I know. So, how does this 'desk work' relate to my job as an electrician? If typing and writing aggrivate the condition in my arms or back does it still count as related to the first or the future second claim? Do I still accumulate hours towards my apprenticeship? If I am at PT for 4 hours everyday in the morning, 50 min north of where I live and have to go to work 50 + another 30min south to work for a couple of hours, how do I get any work done? And can I still get time off to write my exams and that week off to go do my labs for school? How many people think once WCB is out of the picture I get fired, raise your hand? (Yes, I do know they have to give me time off to complete my school but given the circumstances and the company....they have already been trying to replace me with no success.).
What do I do? I have emailed my CW but haven't heard back.
Oh, has anyone tried hypnosis for anything? I asked what the goal of hypnosis is and he said to maybe help me sleep better. Does this mean I won't have pain at night anymore or? I wish I had asked that question.
I also am getting another referral to another doctor, a neurologist. The last one was booking into March and doesn't expedite. Hopefully I will get an appointment soon. I told them I would have better luck with a neurologist than a GP and am glad the doctor there agreed.
Well, I gotta run. Things to do.
Oh, I forgot to mention that yes, I do have pretty good ROM. I am learning just how stiff I am though and how much my calf muscle has weakened. I am also noticing that my left should and arm are much more tight than the other side of me. This is the side that has been giving me more problems, which is just another indicator that something needs to be done to prevent this side and other places from stiffening/locking up on me. I did read an article last night that said that it is a falisy to believe that activity prevents the spread or worsening of RSD/CRPS. Sometimes it just does whatever it wants.
ciao J

 
Old 11-06-2007, 01:59 PM   #7
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Re: What is up with PT?! URGH!

Oh, one other thing I forgot about. I was asked why I shouldn't request a hotel in town while I continue my therapy. WHAT!!! Okay, because I have a home, a husband and I am in therapy 5- 1/2days a week! I will NOT be away from my support system and my HUSBAND! Is he on CRACK!@ URGH!!&*^@#
Tell me how you would respond?! He seemed to think it was a legitimate suggestion and that maybe I do NOT really want to work at getting better. UGH!!!%$#%# J...am I in the twilight zone?

 
Old 11-06-2007, 05:40 PM   #8
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Re: What is up with PT?! URGH!

I switched from a pt to an ot b/c the rsd is worse in my arm even though it is pretty bad in my leg. My excperince with pt/ot's hasn't been that good. I was sent to a rehab hospital earlier this year and oh my goodness that about killed me and I had a tunnled epidural catheter in my spine giving me pain meds! I could barely walk out of the rehab hospital when I could walk in there fine. The reason I switched was my Dr was going to send me there again when I got my scs trial put in, but my mom fought enough and switched me to a hand therapist. I am getting my hand open, but she just doesn't understand what RSD is. She made me a brace one day for my fingers when my Dr said i'm not supostue be in anything that holds my fingers/wrist in a certain pasition for many hours plus I couldn't stand it. Also I don't think she understands I will have good and bad days. You know some days i will make more pogress and than other days less? So yeah I needed to vent to... I think my mother holds my ot on a pedastole of some sort.... i always dread of going to therapy. I pretty much undersatnd that i will have this for the rest of my life. is there ever a time i can stop going to ot/pt?

Erikka

 
Old 11-07-2007, 05:04 AM   #9
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Re: What is up with PT?! URGH!

Well it is morning and I am getting ready to drive into the twilight zone. I hope things are better today. I know the one is at least around all morning. As for how things are physically...Last night I was getting pains in my back making me jump. I felt my back where the pain was and it was hot compared to other areas of my back, so I got my husband to check to make sure I wasn't crazy. He said yes, it is hot and other areas are reallly cool compared to it. Then when we went to bed and I could hardly handle being there. My back, my legs all around, my arms, my stomache, everywhere was on fire! I tried putting some lotion on because I thought well maybe I could massage it. Nope, WRONG! Can't touch it at all and the pressure of my hand, even though I was trying to be light, was WAY too much and turned into deeper burn and aching (in some places). I remembered reading about trying heat on some areas of burn so I tried that. I ended up falling asleep sitting up. This morning, a half hour after getting up, I got my husband to feel my face and my hands. Half my face, the left half, was pink and really warm, the other half really cool. As for my hands, my fingers, just my fingers, were right cold and my palms and back of my hands nice and warm. I am not nuts and I had a conversation with him the other night that resulted in him saying that maybe I am projecting the things I read into my own diagnosis. Okay, two days ago I would have thought that it was possible. After yesterday's therapy session, I will no longer doubt myself. Today I am taking my cell phone with me. It has a camera and I am going to take pictures if there are any obvious changes. Then I will get the therapists attention. The one knows I will NOT allow ice or alternate hot/cold to be used on me. I am not looking forward to all the other treatments she has planned for me. Hope I don't have to experience any of that until I get some meds to deal with all the pain.

Can anyone tell me what do you take for the burning? Why does the burning have to be so pronounced? Talk to you later. Have a positive day and I will try not to cry, like I am almost ready to...what the hell?! I hate this condition...J

 
Old 11-07-2007, 11:38 AM   #10
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Re: What is up with PT?! URGH!

Kincaid,
wow, your going through alot right now.. Take a deep breath.. "HUGS to you"... I know its frustrating.. It sound to me like that PT is not knowledged enough.. You know what you feel.. If you cannot handle PT right now.. Don't do it.. I think you need the right course of meds while doing PT.. Hows the neurontin working for you? The drowsiness will go away.. It takes weeks.. Are you takig any other pain meds beside that?
I don't feel that PT will spread the RSD.. but I do feel it will cause flare ups.. Your sounds so acute right now.. You have alot going on mentally and physically. Like I mentioned before. Its all trial and error.. Your going to PT alot in one week.. Do you feel any better from it or do you feel flared up more?
Theres not much you can do for the burning besides taking pain meds.. You can put a cool wash cloth on it if you can handle it.. Just no ice..
As for giving the PT information about RSD and her turning around and saying take everything with a grain of salt.. I think I would of had to punch her..lol lol.. Honestly.. That just upsets me.. I think I would turn around and give her phone numbers to top RSD specialist.. and ask her to call them and ask their suggestions.. My opinion.. I don't think you should be going.. If shes causing this much anxiety and your still in pain.. Forget it.. Sometimes just staying off you feet, resting it up for a couple days seems to help me..
Forget the steel boots.. If your feet hurt.. Don't put them on.. She obviously does not know to much about RSD.. Who referred you to PT? I agree I think you need to see a neurologist.. Let him make the calls...
When I stopped PT I was 60% less in pain.. Iam also not working now, so I am able to rest it up if needed.. When I was working, being on my feet all day. I would be flared up like your discribing.. I was a mess.. Did not sleep, depressed. Lost tons of weight.. Once I stopped started all the med, I was alot better...
I think right now.. You deserve a mental health day.. Take some days off and just try to relax a little..
Good luck.. Take one day at a time..
Michelle1

 
Old 11-07-2007, 06:03 PM   #11
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Re: What is up with PT?! URGH!

Day three. Total mess. Since last night I have hardly been able to stand the feel of my clothes anywhere on my body. Today was no different. I went to PT and when I got there I found my one PT, explained to her what was going on and how uncomfortable I was. She said that I should really book an appointment to get some blood work done because whatever is going on is not related to my ankle and CRPS. Also, that I it is too early for anyone to be calling what I have CRPS anyway so we need to consider that something else is going on. Huh? but sure okay.
So, I am to do 20min on the inclined bike. (had to wait for my GP's office to open). I know I have to do what they say but you know it really isn't easy to sit and ride a bike, even if it is inclined, when you don't want anything to touch your back, butt, legs, feet, etc. I figured, okay gotta try. I did 10 minutes, that's all I could handle/stand. I walked over got my phone and called my GP. GP is on holidays, doctor replacing her is at hospital (I live in a small town and we are suffering from medical staff shortages). So, okay. I will just have to go after my PT. Went ask if the Doctor could put in a request for blood work, they said that my GP would have to do it because it was not a WCB thing. She then called my PT to confirm that it was her that suggested blood work. She came back to say that whatever is going on is not related to my WCB Claim and as a result would have to be done through my GP. I'm confused, I said. You want me to rule out CRPS, the diagnosis your doctors gave me, but the blood work is not related to my WCB claim? Okay, first I never had these pains to the degree I do until I started here. I also don't appreciate that no one seems to believe that the pains I am having are very similar to what is in my leg/ankle/foot. I am also a little upset that everyone is going about ignoring that these other pains exist but yet it is interfering with my ability to participate fully in my recovery program. I sure hear a lot of talk about pain management but here I am in pain and no one gives a damn! Yes, I actually did blow today. I appologized to the one woman saying that I know she has nothing to do really with any of what is going on but I am upset.
So, I got ready to sign out early and go to the hospital to get that blood work done. Then I thought. No, wait. Call WCB first and find out what the proper order of things to do are. I did most of my exercises while waiting, well half the amount I am suppose to, on some while I waited to talk to my CW. The person I was talking to said he put through a 'respond urgent' call to my CW to call me back. So, I thought I might as well try finishing my exercises and wait. I don't want to get in trouble, it is my first week. I really hate being this person. I did not want to turn into the ****** on site. So, I try a couple of exercises that require me to grab my ankles. I started with the one that isn't as bad (not original injury ankle). It started to burn and then turned into a really bad throb. I started to tear. I tried the other foot, it was way worse but I forged on. Then when I stopped I balled like a baby. I got up went to the bathroom, threw some water on my face. Still no phone call. The rest of me started to get more irritated than before with my clothing and spots around my wrists started to throb. I tried sucking it up and went back in to see what exercises I hadn't covered. They required me laying on the ground and putting pressure on all sorts of areas, well a couple of key areas. Great. This is going to be bad. I got a matt. I took a breath and laid down. It hurt but I thought maybe if I get through it quickly or maybe the burning and pains will decrease as I go. Nope. Every grab was bad and I couldn't get my back to calm down. I got up went for a walk, crying all the while. Then went back tried a second time. Lasted less that time. I then said. I'm done.
I got ready to leave and then was stopped by one of my PT's. We had a chat. I told her I really don't think I am believed by them. She said she does believe me, even though it seems really hard to believe and is common to people who have CRPS to think this way. I said I was bad yesterday and am worse today with burning and pain. She said you need to get that blood work done because...same old song...something else and it is really too early for anyone to be calling this CRPS (any of this). I asked her some questions about desensitization and TENS and the whole other area of treatment. I was told that is an as needed thing. I can request it if I feel like I need it. I said, well why would I request it if I don't know it is an option for me. I tell you I am in pain and I get nothing and the other day no one was around, anywhere! I told her I really don't feel like I am being understood or receiving the best care I could be.
I gotta run...didn't have too much time to tell the whole story...I left early and spent the rest of the day at the hospital under the care of a doctor who has some understanding of this and really wants to see me go to a neurologist....still can't get a referral appointment...working on it but...urgh. He also gave me some meds to help at night and for when the flair ups are intolerable...he made me cry uncontrollably with pain today but at least I got someone to be there and test it when it happened...he also does think this is related to the initial injury...blood work showed nothing....take care J

 
Old 11-08-2007, 04:35 AM   #12
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Re: What is up with PT?! URGH!

So it is AM of Day 4. I got up this morning trying to be positive, that was until I put my shirt and pants on. Still tender and burning all over. I should have been more clear earlier. I was having symptoms of burning, aching, throbbing and shocks in my arms and both legs prior to physio but they would come and go. My back had been questionable prior to physio because it came/went. I also get shocking into my back, enough to make me jump forward in my seat. So, at physio day two when I said I never had these pains before, I meant to that extent and range. I never know that my stomache could burn.

Yet, this is day four. I feel really fuzzy today but the burning and tender spots are still quite prevalent today. I thought they would go away. They seem merely to have calmed down a little. My arms are starting to get a little more irritated with typing but what do I do? Have to keep moving. The doctor yesterday that I saw at the hospital did a full body check...brutal but necessary because I had never seen him before. He broke everything down for me. He said he doesn't discount that my lower left leg/ankle/foot suffer from CRPS. As for the rest of me he said, well maybe gabapentin could be causing this because it is intended for the whole body. I just let him talk the whole time and tell me what he knows. I thought he was pretty smart. So, he asked how long certain symptoms were around before I started the gabapentin and ruled it out as the cause. Then said there has to be something from the way the nerves in my foot are reacting to my main nerves that are causing all the other nerves in my body to misfire and send incorrect signals. He said it is interesting that this is happening and he has never seen this happen to anyone before but then said, not to say that it can't happen it is just very rare. Why can't I have this guy for my GP? He did the blood work and before getting the results said he suspected it would all come back fine. I still have to wait for the thyroid results and go over them with my regular GP. Again, he doesn't think that anything is going to come back from it. Interesting....
I did read a guy's posting on an nuerology posting site/community group. He said he had the exact same thing happen to him but I don't know how to talk to him on that community because there isn't a clearly defined way of getting on there. Kinda strange but I have to try to find a way. His flair ups have been quite recent also.

Hope you have a positive day. J

 
Old 11-08-2007, 09:12 PM   #13
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Taimse HB User
Re: What is up with PT?! URGH!

I just started reading, so don't really know your history.
There is something called The Joint Commission on Accreditation of Healthcare Organizations( JCAHO). it supports the patient's right to pain management....the pain is what the patient says it is. I would check out what that commission says about pain and see if the facility and the people working with you are doing what they are supposed to be doing about believing your pain and doing what can be done to help.

 
Old 11-09-2007, 04:30 AM   #14
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Re: What is up with PT?! URGH!

I live in Canada so I don't think that would apply but I will definately look for something similar. Thank you.

My CW is trying to get me into this special clinic that know about CRPS. They show the plan online of what they do. It sounds incredible! The make sure you are taken care of medicinally first, then get you moving, give you a psycologist, and then slowly start integrating activities/tools of your work environment. I am working towards my journeyman ticket as an electrician so I think this is really cool that they could get me using drills, ladders, saws, etc. The only thing is I have to qualify first. I am going to guess they are basing it on pain levels, most seem to that I find anyway. I don't know if I will qualify because I am not as bad off as some people because my ROM is good and the pain, while steady in the one leg and only newly steady in other places, the majority of it comes and goes and comes and goes along with activity. But at least my CW is trying to get me the right treatment.
I have been telling my CW everything that has been going on at this clinic I am at and she had a long talk with them about my treatment. She does, however, still think they do have experience with CRPS and says we need to trust them. I said okay but I do have a couple of questions. Given my sensitivity to pressure and touch why isn't desensitization part of my program? and why is it when I am in pain no one does anything about it? Are they thinking that my pain is something that has to be taken care of by a GP or Neurologist or ? She said those were good questions and she is going to talk to them about that. She also said that if I don't qualify for this other clinic then we will go into a comprehensive treatment program for me at the clinic I am at. So I am a little confused why I don't have it now.
Nevertheless, good new arrived yesterday. I finally got an appointment with a neurologist. It is in two weeks time! WoooHooo! Okay, I know. Don't get too excited but I can't help it. Finally, someone who might understand what is going on or at least will investigate it.
Yesterday was a good day for me. I was not totally pain free but it was within a range I could tolerate for short stints. I was also really out of it so ??? Today I still feel about the same as yesterday but a little less out of it. It seems that the pain has settled into the areas it was coming and going from - Left leg (original injury - steady there), right leg, forearms/wrists/hands. I still feel it in my back, shoulders and stomach but it is very low level burning. I just can't believe any of this has been sticking around steadily since Tuesday.
Oh, the one PT that I don't like I had her check my one knee because I thought it felt a little swollen and I am having problems doing some of the exercises because of it. She does a check and during the checking, GRABS my bad ankle with the fist of Zeus, why it had to be that hard I don't know but I got...'Sorry I need to be able to move your knee around"....I said just to get it over with fast. I think it really helped I was so out of it yesterday because it really REALLY hurt but for some reason I still managed. So at the end of it she measured and everything and said that nope it isn't, even though she thought it might be. She then said well it is you hip and probably from walking...okay, makes sense because I haven't been walking totally correct. BUT then she says you are doing AMAZING and really Improving! REALLY, How do you figure? You can handle touching so well you are definately on the road to recovery!............How do you figure it is recovery when my body didn't hurt this much until I started here. AND my pain was never continuous until now? AND I am TOTALLY out of it and really do still feel the pain but for some reason it is like I have had a separation of my body from my nerves. Like I can still feel what is going on but my nerves just kind of float out there like some distant lightening storm that is cool to watch and you can feel the electricity in the air. It isn't painful but you know that if it were any stronger an electric field you would start to hurt. Yes, I understand that none of this is normal but it is kind of how I felt yesterday and, okay, maybe a little today.
Well, that was interesting. I should go now. I hope everyone has a positive day! Good luck! J

 
Old 11-09-2007, 08:12 PM   #15
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Join Date: Sep 2007
Location: Didsbury, Alberta, Canada
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kincaidj HB User
Re: What is up with PT?! URGH!

I tried TENS today. What is that suppose to do? Does anyone know? What am I suppose to be getting out of that?

 
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