[Kyzyl363]

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 mine are with me all the time now, well chronically since last Tuesday and I had one good day on Friday when everything was there but very mild and manageable.

Symptoms of (away from original injury area affected by RSD):

- 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, or a constant deep 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 not 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 figure this out. I am a little freaked out these days about what is going on.
Thanks for your kind words of support. J

[ali12]

Hi there,
Sorry I can't help you on this. I don't get any of those symtoms away from the area affected by RSD. However I do get most of those symptoms in my foot.
Sorry that I can't help you
I would speak to your doctor about it, maybe he can give you advice on what to do
Take care
Alison

[dreambeliever128]

I had those exact same symptoms you had when I first started with the RSD in 98. I am not kidding. I was so bad that I was so suicidal I was a mess.

I did have several things going on along with the RSD though and I am wondering if you don't have Fibro along with the RSD.

I couldn't wear a bra for a few years. I was told I was having anxiety and panic attacks along with what was going on. I was in so much pain I felt like that was the cause of not being able to sit still or sleep at night. I slept with 2 heating pads, I used my braces for my other problems and used 3 Lidoderm patches to try and calm it down. I even took pictures of how I looked for my Dr. I also had a shoulder brace and neck brace to wear for other problems. I spent almost 4 years in PT to calm things down along with triggerpoint injections, 100's of them and 3 blocks. I also used 2 tens units for a couple of years.

Bill opened all of my bottles and cans. Now Dustin does when he is here. There are times I just put things back because I can't get them open.

I had the muscle spasms in the neck, shoulders and back. It was horrible. I got many of triggerpoint injections in those areas to calm it down.

My little finger is smaller on the right hand then the left. My right hand is in worse shape all together then the left. They also spasm up and look deformed at times. At first when I had TOS surgery I thought that took care of the spasms but they started back up again about a year ago.

I can't wear heavy coats nor heavy coats. There are days I only wear shorts because of being so uncomfortable in anything else. I can't wear long sleeve blouses. I have a few but I put those things on and then I come right back out of them. My body gets too hot all over and then I go into more of a pain cycle.

I get the mottled colors in the palm of my hands and they swell when I walk and swing them or use them too much.

The blocks helped me the most with the pain along with the triggerpoint injections.

I hope you do get the help you need to get better. I know exactly where you are at right now and it is bad. I would make sure I had a Dr. that was up on RSD and also look into the Fibro. It does come with the RSD at times. We do have a Fibro forum where you can read up on it.

Ada

[theoneRogue420]

Hi Kyzy. I am so sorry to hear of your troubles. I hope the neuro can give you the help you need.

My problem started in my right ankle. It slowly crept into my left ankle, then started on my knees. I am also having some symptoms in my lower arms, too.. but I try to ignore that for now. I've had it 14 years now. Luckily, I don't have "full-body" rsd like you and some others here do.

The only thing that saves me from suicide is drugs... lots of drugs. It sucks, but there is no way around it. I try to take about half the morphine I am entitled to, but some days that just isn't possible. On those days, I am too stupid to speak. I really hate it.

I also have a tens unit, which helps quite a bit. The problem with it is the annoying wires that come with it! It doesn't work for everyone, either. I have Lidoderm patches too, but I save them for the very worst days. My insurance won't pay for very many. They really don't help as much as I make it sound, lol. It's a psychological thing... when I am at my utmost limit, they are just enough to keep me sane and get me through it. Kinda crazy, but whatever works for you is wonderful. We all have to find that "one thing" we can latch on to in the worst moments. Mine happens to be hot baths and Lidoderm patches.

It can take some time for a neuro to do all the tests. They feel the need to take a lot, to rule out everything else. That number varies from dr. to dr. Be patient and hopefully she/he will come up with a game plan that works for you. It CAN happen.

Try to stay as active as you can, and avoid braces and crutches unless you have no choice. I fell often for many years, and had to wear a r.o.m. boot. My ankle and calf atrophied dramatically over seven years of that brace. It has taken seven more to rebuild it a bit. Try not to let that happen.

Best of luck, you have my prayers. Keep us informed as you learn more. We will be here for you.

Rogue

[Jomar]

the racing heart feeling could be from anxiety, thyroid or chest muscle spasms. I could be missing other causes too.

Some with TOS have gone to ER thinking a heart attack- but tests came out clear - it was severe spasms causing it.
Of course if you ever think it is a HA - do go to Dr.

I had a odd spell of racing heart beat and dizziness a couple yrs ago- but after having blood and basic tests the symptoms just went away
dr thought a very odd virus or something..

blood tests should show if it's thyroid related or not.
many with borderline thyroid readings feel better with treatment.

[Kyzyl363]

Well now I am a little freaked out. Ada my heart goes out to you. You had me in tears, not only because I am scared but because you had to go through all of this. It really does sound the same though. It does filp-flop between left and right arms but is predominantly in my left arm. My neck is making me crazy with the spasms and cramping. I am reminded of this as I type now, my whole left side from my fingers all the way up my arm to my neck want to pull in. What is going on? Do nerves really have that much control over muscles? Or is it the other way around? I am now wondering about my back and shoulders if they aren't burning because of muscle tension. Could be, I'm not sure anymore. I will have my doctor take a look. My PTs are useless to me now.

Yesterday at physio I noticed that by the time we got into the education session, 3 1/2 hours into physio that my toe nails were grey and the palms of my hands moddled. By the time I got home later everything was back to normal, well as normal as can be. Does anyone get that?


The heart racing seems to come with spurts of energy. It isn't me doing things that causes it to come on. Like if I am at the computer it will start and then I can't sit still anymore. It is different from the nausea that I was getting before. I am thinking that is stress related because if I get too worked up about something, being kept in a situation and not being able to get away from it, like being in physio and them not understanding the level of pain I am in and not being able to do anything about it nor leave to get away from them. That kind of thing.

I was looking up some things on Fibro and it says about headaches and dry eyes. Before I started on the gabapentin I was getting horrible migranes and constantly putting eye drops in. My right eye was also getting red a lot but I thought it maybe alergies, strain or dryness. It still gets red once in a while now and a week or so ago I had dry eyes again but never thought anything of any of it until I was reading about Fibro. It says though that you have to have the symptoms three months before it can be diagnosed at best. Is that true? My arms though really do at times feel exactly like the pain around my original site so I don't know. I don't know anything any more but I will ask my doctor to consider this when next I see her.

I just can't get over the burning in my face. I had forgot about it for a while last night before going to bed, then when I put my face into the pillow!!!!!! That was unpleasant! Good thing for fuzzy soft blankets. I managed with a corner of my blanket over my pillow.

I hope the neurologist is thorough but not crazy long term with testing. He is recommended by a doctor that has some understanding of CRPS. So? Next week seems so far away to start walking the path in search for more answers.....I will keep you updated as things progress.

Thank you everyone. I am really glad to be here and sorry that you are all here and, at the same, time happy you are....TTL J

[wakegirl]

while there are certainly some physiological reasons for the symptoms you are experiencing, however there are also some significant psychological ones. when we experience pain and frustration it can often result in a spiked heartrate or other physical complaints.
the stress of crps wreaks havoc on our systems. when those symptems present dont treat them like random occurances instead consider the mental roots that may be the cause of the problem.
this is not to say it is all in your head, it most certainly is not. i simply meant that far more often than we can recall the physical and the mental blend and often times the results are frightening.

[Kyzyl363]

Thanks everyone. I am going to talk to my doctor about the Fibro thing. I read a bit on it and am wondering now just how much of this could be Fibro. I doubt my doctor is going to know much about that one either but heh, gotta try. Do the symptoms really have to be there 3 months or longer to do the 11/18 point test?

I am in a bad way these past two days. Everywhere is bad and I don't know how much more I can stand. It really does make a difference for me to have just the one or two areas in pain compared to now with everywhere in pain. If I loose it in physio and they tell me I need to learn to manage my pain I iwll tell them where they can take it! At least yesterday I got to show the one how the temperature changes in my fingers. One minute they are both warm. Then I start doing something and the fingers on my left hand go cold. Just the fingers though. My right hand doesn't seem to be quite as affected as my left but that seems to be the common thing over my whole body.
One week....then the neurologist....TTL J

[ali12]

I am so sorry about your problems KZYZ, I really hope that things start looking up for you. ((hugs))
Your need to stand up for your self - don't let the Physiotherapist tell you to work through the pain if it is too hard for you. Physiotherapists, doctors etc don't understand how bad the pain is so they tell you that you have to work through it, but it is easier said than done. If you don't like your Physiotherapist then ask to see another one or go to another hospital. I hate my Physiotherapist, doctor etc so we are trying to get a referal to another hospital,
Take care
Alison
(hugs)

[Kyzyl363]

I must have pestered my CM at WCB enough that she has got me into a more complex program at the clinic I go for physio. It involves one-on-one time with a physiotherapist doing some desensitization and manipulation. Then I have my regular stretching and exersizes to complete. I meet with the psychologist 2x/week. I also do more with TENS and hopefully something else, other than contrast baths. They know I won't do them and WCB knows I won't do them. I still can't even get them to look at any of the information I printed off, included some of the other stuff I have printed off. That really bugs me. They also don't like me on these boards. I told them too bad. I think I am old enough to make my own decisions thanks. The psychologist says 'Good for you for sticking up for yourself!' Whatever. It is my body and my life.

Anyway. I am looking at another week until I can get an appointment for the evaluation process at this other clinic. It will be a two day process but well worth it if I get in. Here's to hopeful thinking!

I hope things are progressing for others here. TTL J