when is it RSD
 

My entire left leg hurts from the slightest movement at my hip. Not ALL the time, but enough that it's scarey. Sometimes when I bend, the pain goes from my back to encircle to torso. Feels like my entire torso, every muscle, has nerves on fire.

Is this what RSD is? What stops it?

Hi LizaJane- pop over to our RSD forum- we have many useful stickies too-
http://neurotalk.psychcentral.com/forumdisplay.php?f=21

Here's on site:
 

and Bobbi's right, it is one step lower on the 'menu'! - j

http://www.rsds.org/3/clinical_guidelines/index.html

I guess we aren't alone?

Hi Liza
 

There are some who say Fibromyalgia is a generalised RSD. I don't know. I do know that I don't have the classic PN pain that much anymore. Now I have general muscle pain,fatigue,tightness,tender areas and so forth. I think PN can transform itself and feel like other things are going on at times. Maybe it's even healing?

visit RSD forum for sure
 

but my seminar covered "triggers" for fibro... and chronic peripheral pain is one trigger. If one has the genetic up regulation for pain perception, fibromyalgia can result.

For what it is worth, I have had leg pain like that. I ice my back, rest in bed
and take ibuprofen (or any other NSAID for a day or two).

RSD has swelling, discoloration of the limb and other signs. It is thought to be an error of the sympathetic nervous system. Some people with RSD develop fibro too.

looking into this
 

Thanks guys, I'm looking at the crps forum (rsd), and I do think that's what's happening to me. The slightest movement of my hip, and I mean SLIGHT, can cause excruciating pain. It's spreading to the other hip. The pain is total, my entire leg, and deeper than anything I've experienced before. The aching in my butt is ceaseless now, even lying in bed. It's not awful; it's the pain with movements that's awful. If that became constant and predictable, I'd want to be in a total body cast, that's how bad it feels. It's way out of proportion to the size of the movements or stress. Also, just slight pressure causes pain out of proportion.

And, one more thing, as if that weren't enough: I'm getting myotonic jerking movements. When I was first put on oxycontin after the surgery I developed myoclonus--that's an involuntary movement of large muscle groups, and a startle reaction to sounds which is huge, could cause my whole body to jack-knife. My doctor stopped the oxy and put me on Klonopin, and it went away. But it's come back again, and I'm not taking oxycontin anymore. When I lie in bed or relax there are jerking movements, slow, almost rhythmical, of an entire, leg, arm, shoulder, or head. It's rather disconcerting.

So I'm alarmed. I feel like I've got so many problems going on that finding the right doctors and treatment is going to be even more overwhelming than it has been.

For what it's worth, CRPS or RSD, is auto-immune. I have the genetic marker for it, so I was worried going into the surgery. When you get tested for gluten markers, HLA class I antigens is the test, one of the genes they test for that is a "lesser" gene for gluten (Im not sure this is really true, but Dr Fine of gluten-testing labs says so) is also the gene for RSD.

So it's back to auto immune. One thing that worries me, as if there aren't a million, is that fusing the back depends on having inflammation and not suppressing it. Getting rid of Regional Pain syndrome seems to depend upon decreasing iflammation.

I have a lot more reading to do, and I feel less and less up to it.

Overwhelmed, and a bit prone to feeling near hysterical, no, obsessed, over figuring it out.

I need Dove Bars more than information just now.

Strange
 

I've just read your last post and you have just described what was going on the two weeks before I was hospitalized. The slightest movement of my lower body started twitching and really unstoppable pain. Then the upper body started twitching. This has just now lessened. I asked why my legs were hurting. When a sacrum is fractured it makes muscles go into fast forward mode. When the muscles are swollen around the nerves it makes the nerves over react. The first day I was in the hospital, I was semi conscious but I could feel the twitching of my body, first a leg, then a arm, then a ripple up one side of my back, then a foot, it seemed that my body was doing a painful dance. Just trying to untense a muscle was excruciatingly painful. Some of them still are. I'm wondering if your nerves and muscles are over reacting to the injury you have in your spine.

Billye

Have some Dove Bars on me, even a chocolate egg cream on Ave. A. As you know, and from what i have read RSD has to be treated aggressively early. The fact that this may complicate your healing due to the need for inflammation is terribly upsetting to you i know. I dont have any answers as to that. I just wanted to let you know that i do understand the complexity of the dilemma that you are trying to find your way through, and hope that you get through this as quickly as possible.

We need FULL BODY TRANSPLANTS!!!
 

That way, we get the body we want, we can eat Dove Bars all day long.

AND MUFFINS.

The body I would choose?????

hmmm. Jessica Alba's body.

Any day!!!!

Pain relief
 

Jane,
What are you taking for pain relief? Is it something new? Have you started anything new?

This is serious business and I know how fast my pain got out of hand this last week. They lifted me onto the emergency gurney in a sling. I could not stand any movement. And I take a LOT of pain without whimpering. The inflammation got so bad so fast, it was overnight. I got up once during the night in pain and then couldn't get up at all in the morning. You need someone, neuro or whatever to intervene before this does get worse before it does become RSD if it hasn't already.

Is there any color change in the leg or mottling or swelling?

Billye

Oh my poor Billye:

There I go again, making jokes, and you are in horrible pain.

I do apologize and I hope you find some relief.

Take care of yourself.

Melody

LJ i would like to know ,as well what you are doing for pain? Your description
of Ocycontin sounds exactly the way i felt on it. Everytime i come out
of the hospital i get a new diagnosis of a autoimmune disease.I sure you
are very worried..:hug: Sue

I have posted about some similar issues
 

I have had symptoms of dystonia in my feet,and tardive dyskensia in my jaw. I have also had twitching,jerking and myoclonic jerks while I was on oxycontin in the hospital. also I have an unbelievable startle response. I just about hit the roof with a loud noise. I have corresponded with people who have very similar occurrences, but they appear to wax and wane. One week they are there,next week they are a bit different or even gone.The more I stress about them the worse they seem to get. When I finally accept them they dissappear. Go figure?

I hope you are able to figure this out,as the pain aspect doesn't sound very good.

Shiney Sue: For pain the only thing I've been taking is oxycodone at night--15 - 20 mg. During the day I just keep adjusting my position to be as comfortable as I can, and wear the corset/brace thingey. Last night I tried 100mg of my friend's Tramodol, which he had for rotator cuff problems. It didn't touch the pain, but then I gave myself a hard massage of the long muscles of my back, and I felt better than I had in days. Also, I realized I'm a bit constipated (a bit?) and whenever that happens it feels like my intestines are pulling on my back and bladder making the pain worse. So I'm going to fix that problem today. The issue with the oxycodone is that it is just so constipating. When I take anything to combat it, I find I go the other direction.

Aussie: I had no idea that anyone here had any movement issues. This is the first they've come up. My startle on the oxycontin (this is a long acting oxycodone) was so extreme I jackknifed with a door closing or alarm ringing. Giving that I'd just had spinal surgery, it was the most painful post-op experience. What are you on that it causing your movementi ssues?

General question: How many of us have movement issues: twitches and dystonias and myoclonus type movements? What meds are we on?

Finally, after feeling so much better with my self-massage (rolling on a ball or rolling pin) and knowing I'm constipated makes me more optimistic that maybe this is NOT RSD.

I'm not sure but...
 

A book I've owned for years has exercises for the back muscles that you do laying down. It's called 'Oh! My Aching Back' by a Leon Root. It's out of print but available thru Amazon and other places. I've gotten it and given it as gifts for friends w/back issues.
It is a 'period piece' due to the times it was written [discussions on pain-killers are now sort of funny], but it's got good explanations on how your muscles work normally and abnormally when stressed in any way. Why they spasm and all that. The exercises are all pretty passive as you are flat out on your back or stomach doing them.
The illustrations are easy to follow and classic - new books seem to use identical ones.
I don't know if these would be acceptable with your issues LizaJane, but some of these exercises could probably be done and not make your issues worse..providing you get that old doctor OK. Seems sometimes that the more times change, some things remain the same [these exercises for example].
Hope this helps! - j

Due to spinal cord damage: Ataxia, muscles that don't work, spasticity, and, eventually secondary dystonia.

rose

Hi LizaJane, I have had RSD in both legs for going on 5 years now, and I was diagnosed with CIDP 2 years ago. I do not experience pain directly associated to any specific movements. What does hurt is when something rubs against me when I am moving, sometimes the wind hurts my legs. I have had 2 Doctors tell me that they think that my CIDP is a natural progression of the RSD. Who knows ? I can tell you I cannot differentiate the RSD pain from the CIDP pain. They are the same if you ask me. I do not get pain from movement alone. I do REALLY hope your pain goes away, DO NOT LET IT GET THE BETTER OF YOU!
BIRD

This has all been interesting and imformative, Thanks..I was taken
off of Oxycondin,all those body movements scared me.Had a talk
with my Neuro she said let's try (what's with let's) anyhow i went
on Morphine Sr 30mg. at night same in morning if i need it and 15mg.
in afternoon that makes me to sleepy don't do it very often. But
she was right the twitches went alway..Been hearing alot about
oxycondin on the news,not sure now what it was anybody remember??

dalek i wonder if you can do those exercises on a firm bed,like i do my
stretching excercises?? Ok i even do my yoga on the bed. I got a
mat and on the reverse side was a massage mat..It ended up going
to my daughter-in-law. Even though i have lost a lot of weight i still
have fear of getting on the floor and nobody finding me if i can't
get up.

LJ this pain from hip Down sounds like my friend Bob evey since he fell
and broke his pelvis bone,it's been 3 months now,and he complains of
same pain. Anyway anyone else get med. twiches??? I hope everything
works out for you.

Sorry 1 more question Mrs. D have you heard of study on Darvocet and
Alzheimer's?? :eek: :hug: to all Sue

Oops, forgot myoclonus. But my experience may not be very relevant to this thread anyway. No meds.

rose

Rose
 

I think your experiences ARE relevant to this thread. Because you know, we've never discussed movement issues here before. And I'm wondering how many of us have them. What do you associate yours with? From the B12 damage itself?

eased up
 

Just want to let all you who have shown such concern that things eased up over the weekend. I realize how much a cascade of events can do, and how fragile our bodies have become.

I think the pain had gotten really bad because I'd gotten constipated. Constipation causes pressure on lots of nerves for me, and always increases pain. And oxycodone causes constipation. I don't like taking Miralax every day because then I get diarrhea, and with the neuropathic bowel, it can get messy. So, over the weekend I took a laxative, had a good 'un, and felt better. Then I did self massage and that helped. (I feel like I've said that already somewhere). So yesterday and today are much better. I feel more hopeful, and the idea of it being RSD has receded.

Course, I set up doctor's appts based on my fear, so now I'm not sure what to do about that.

Things get complicated.

Thank god you went to the bathroom!!!

So here's hoping you have a peaceful day and restful night.

Oh, when Alan was on the Fentanyl patch he went once every 5 days. I do not know how ANYBODY CAN GO ONCE IN 5 DAYS!!!

Boy was he a happy camper when he got off that patch.

Sending you a hug. And good thoughts about Dove Bars and Muffins

Melody:hug:

LJ
 

Morphine does the same thing,and we can't run around Like we used to.
And the Miralax you have to be careful about leaving the house. That
site dahlek posted has me worried,the pictures a few look like my foot
and legs. That blister then got the size of a base ball or more like softball.
And it's still draining. First they say celluities,another said vasculites
and darn it i can't spit,with the Sjogrens Syndrone Than the PN. How
do we know what is causing what??? :( :confused: Sue

Yes, Liza Jane. B12 deficiency did it.

Unfortunately my motor functions were affected before anything else became alarming. And then the ignorant, arrogant doctors fiddled while my systems degraded.

And motor function is probably the least likely to recover.

Thus, my research and big, persistent mouth! :wink:

rose

Love it
 

Rose we love your big persistent big mouth. You've saved a lot of lives with it. Thanks so much. And this reminds me. I've posted your B12 link on the Sjogrens forum and every now and then I boost it up to get everyone reminded that you are updating as you can and also to catch any new members we have. Thanks so much to you for what you do.

And thanks to all of you for what you do.
Billye

Thank you, Billye. :hug: Now I better find some time away from helping family to add lots to that site!

rose

HLA Types
 

A point of obscure interest--I have the HLA DQ1 type that Dr Fine of enterolabs says is a "lesser' gene for gluten intolerance. It's also a gene that predisposes to RSD as well as narcolepsy.

IKnowing that put me on high alert to look out that my back pain does not morph into RSD.

LizaJane, I guess that you are not ...
 

alone in the brain going into 'hyperdrive' mode. I can't think of a person here who isn't/hasn't been going thru this mode.
Not to - is a person, who is - not a person.
I Truly Sincerely and Honestly am hoping that you get lucky -really LUCKY!- with the docs you get in the future to deal with it all! I got sort of lucky after a year...I just wish it didn't take us all so long....It SHOULDN'T have to BE this way!

:hug: :hug: & more for your support of myself and others - j

I go over to your site as well,so welcome :D Sue

thank you Rogue
 

I do have decreased sensitivity on the skin, as most pn'ners do. What was worrying me was that small movements, fractions of an inch, at the hip or back, were setting off pain that would either wrap around my entire torso, or make my entire leg feel as if it were one bit lightening rod. It seemed so out of proportion to the size of movement.

Does that fit? Now I do think it's pn, and constipation combined with other issues that set off the spiral of the last few weeks, but I'm still interested.

And, so you have anything to add about that HLA finding? Is it particualrly meaningful?