Can rsd sensations on new limbs not be spread?
 

After much difficulty I succeeded in contacting my pain managment doctor about my new symptoms, which I've mentioned before on this forum :
Burning sensations and chills (at times pretty strong) in the legs, with some moderate reddishness; burning sensations in the face, throat and chest, originally set off by a mildly peppery meal but continuing for the past week.

I was concerned that my RSD is spreading. I give the info to his nurse, and she calls back and says he doesn't think its RSD spread and I should see a psychiatrist to (she didn't explain why very well I'm afraid and acted very harried and busy).

So....can you have RSD-like burning sensations beyond the original site and it ISN"T actually RSD spreading? Or is this guy just dismissing me as a hypochondriac? This would make him the third doctor this year to make that assertion- apparently I must come across as nuts to doctors. The first two turned out to be wrong (the symptoms were actually early RSD)...I'm really getting tired of this...

In my case my RSD spread from the orignal affected limb (My right leg) to my left leg, so YES it can definitly spread. I have found that when you have RSD, half of the battle is getting your doctor to listen to you. I would insist on getting an appointment with the physican that treats your current condition. Also, half the time nurses just say stuff and maybe this nurse did not tell your doctor your newest concern. Call again and tell them you must talk with a doctor either by putting the message through or making an emergency appointment. With this disease you can never be too careful.

My wife's RSD has spread from her right wrist to her other arm and legs. I've witnessed many times doctors stating that RSD does not spread. They are misinformed, keep searching for one who is.

RSD spreads.
That's what it does. It's like "the blob".

I'd say that you're experiencing the spread, and your doctor simply doesn't know what to do for you, so, they send you to a psych.
What he's really saying is, "I don't know what the heck else to do for you, and I'm afraid, so go somewhere else. I've done all I can."

If you read it like that, he's doing you a favor.
Find a doctor who knows, and treats RSD!
No matter how many phone calls you need make.

And, don't forget the rsdsa.org !

They have a doctor finder! Put in your zip code...

I wish you the best!

Pete

Wolf
I feel your pain,,I agree with the upper replies to your post,,Alot of dr's , either beacause of their lack of concern and knowledge , they just want you to go away,,,This is hard to swallow but true,,im experinecing it now too,,keep looking for a dr who will listen and has knowledge and empathy,,,And as for the psychiatrist,,,they like to send you there , either he thinks its all in you head and he doesnt believe you ,or he thinks its starting to affect you mentally and wants to ease your depression,,,either way,,i think that is an insult,,,alot of us are going thru this as well,, your not crazy,,,rsd does spread,,it can go full body,,and i dont know you,,but i believe you,,,,thats why they renamed it crps[c] complex...meaning , no two people have the same symptoms or spread,,its a very unpredictable disease,,,,keep looking and research as much as you can,,,I pray that God gives you relief...............bobber

Hi Wolflarsen,

I'm sorry you experienced such unprofessional treatment with your doctor and nurse.

Considering that you indicated that you don't have insurance you will be best served if you can arm yourself with the most current data on RSD/CRPS. You need to educate yourself quickly and I would highly recommend the Medifocus Guidebook on Reflex Sympathetic Dystrophy. It starts out by quickly answering your most fundamental questions about Reflex Sympathetic Dystrophy, including:

What causes the condition and are there any recognized risk factors?

What are the predominant signs and symptoms?

How can you be sure that it's really Reflex Sympathetic Dystrophy and not another underlying condition that causes similar signs and symptoms?

What tests are needed to establish the diagnosis of Reflex Sympathetic Dystrophy?

What are the standard treatments?

What are your treatment options in case the standard treatments don't work for you?

What is the most likely outcome or prognosis after treatment has been completed?

How will the condition affect your lifestyle and what steps can you take to minimize the negative impact on your quality of life?

What are the most important questions to ask your doctor about Reflex Sympathetic Dystrophy?

Here is a link to a preview of the book.

https://www.medifocus.com/2009/previ...5581&gid=NR015

To answer your question about spread here is what the most current Medifocus has to say:

While there are times that I have RSD pains in other areas of my body I have never been able to have it confirmed that the RSD has spread.

Many people talk about having "whole body RSD" as the result of their spread (my heart goes out to each and everyone of you, I honestly don't know how you get through the day with this spread everywhere). I've never really understood exactly what that means as it has not been my experience. Of course every time my arm burns at the slightest cold temperatures or when the pain ping pongs from joint to joint along the left side of my body it scares the crap out of me. Other than those sensations I don't have the typical external signs of RSD anywhere for the doctors to be able to confirm the spread.

I think about this a lot and reading the latest Medifocus guide seemed to make the light go on for me.

I believe that there is a centralization of the pain that occurs in most of us probably right from the beginning. The RSD manifests itself differently in each of us depending on many many individual factors.

Here are a couple of quotes from the guide:

Personally I would fire your doctor and seek help from someone more experienced. Before you book the appointment and commit to spending the money make sure they treat other RSD patients.

Good luck.

MsL

Hi Wolf,
I'm sorry for your situation. There is a lot of compassion and educated friends here that are willing and want to 'be there' for you. I am living proof of spread-generalized or full body an one Dr. phrased. I have a good neurologist,pharmacologist, psychiatrist 3 in 1 Doc. RSD is such a devasting disorder, counseling is a plus. Being on the right meds for YOU is imperative.
Everyone is different and reacts differently so find a good Doc, get a correct diagnosis. For me physical therapy and desensitization were critical. Massage therapy and swimming were a huge part in keeping me mobile. I do have one hand that is partially paralyzed. Didn't get treatment soon enough due to wrong diagnosis. But I'm grateful the fingers are only partially paralyzed.
I got RSD following surgery-Doc was scared and shipped me off. The early therapy saved my range of motion. I had two remissions of about a year each due to having intensive treatment.
There is a site that I learned a lot on rsdrx.com by Dr. Hooshmand a RSD specialist from Florida. He is retired, but still can learn a lot on his site. Go under the Puzzles List-there are 146 questions with his answers about RSD.
The RSDSA site has a place for your zip code and you see a name and phone number to contact if you want the closest RSD support group. They are very helpful-can learn who in your area has good reputation for RSD treatment.
Please read as much as you can-will learn a lot of coping tools from others and stay connected with others. Take care, loretta

Loretta; Interesting post.

My RSD started with an injury. At the time I knew it was serious but didn't really understand how or in what way. I'd never heard of a disease like RSD and the doctors were bending over backward not to tell me. My triggers were unknown and the only symptom was a pretty constant very low level pain in the hand. I was tired a lot and felt stress more keenly but didn't suspect this might be related. Stress manifested itself in bad digestion and this too wasn't connected.

As time went on the triggers started becoming apparent. If I used the hand or there were shocks to it then it would hurt more the following day. I bagan doing things one handed. By this time they were providing some medical care but I still didn't know anything. It was only after injuring my ankle (probably caused by the RSD) that it came out of the partial remission and started spreading. It seemed almost as though it first started creeping into the other systems and then up my arm until I had what seemed like a classic case of shoulder hand syndrome.

Since then it has tried to spread to almost any new injury site. I cut my ear a couple years back and it sometimes suffers severe high intensity pain but I do have means to control it and 250 mg of grape seed extract every third day seems to shut it up. I usually need to keep my hair off of it and cold sometimes affects it.

The right hand also shows some signs of RSD and the site of an angiogram from 2003.

It also is progressively expanding down from the shoulder as well as up into the neck and around to the front. As the area expands though it seems the problems become less "focused". It's almost as though this thing can cause only a set amount of pain at any given time and that can be all in the back of my hand or spread around a lot.

Of course the pain can be tremendous so avoiding the triggers still seems the way to cope. I do not want a spread but so far the spread hasn't been an extreme problem. It would become one if the right hand gave out or I couldn't walk. The spread is just now reaching down to a pre-existing back condition and this is very frightening as well. It seems to set off the pain in the back but I can simply ignore this now and it goes away. If I actually hurt my back it might prove more serious. I'm extremely cautious.

It feels like living on a bubble for eleven years sometimes but everyone here gives me a lot of courage to replace what seemed to evaporate with the disease.

spread
 

Mine spread from my left arm to both arms and legs...the docs tried to say over and over that it wasn't a spread and finally they believed me. I hope yours hasn't spread but keep advocating for yourself and don't let them make you think you are crazy. What is happening is real to you and that is what matters!
Jennelle

Hiya Jennelle,
Great to see you back!

It's true what you say about doctors.
If they do choose to treat you, and don't know (anything) about RSD, then, they're very afraid, and almost defensive. So, caution is their approach, and they take SO LONG to get past the conservative treatments, when actually, many of us need much more Aggressive treatments, meds, etc., EARLY ON!
These doctors are in a bad cycle, we need treatment ASAP, and they lolligag around, with us, because they're afraid! Meantime, this can get worse, and become permanent!
This is the cycle I went through, and now 26 years later... I Know I was used, by some unskilled doctors! My first Ortho, (I got this on tape, too), accused me of malingering! I said, sorry Doc, your hot pack's ain't helping me! So, he sent me to a psych, and I started the 7 year search for a dx.

We are at risk of being their "test dumby" if they've not kowledgable of rsd. They're interested and want to see what's all the fuss about..
That does NOT make them a good RSD doctor!
So, be careful of this kind of "mistreatment".
Ask them the Hard Questions!

pete
asb

Our symptoms come before the signs they can see..
 

First off let me say that there is medication that is sometimes taken in tandem with an antidepressant that can cause alot of redness burning stinging pain and heat... and darn it all can I remember the name.. begins with a T? I will post back when I remember it..

However:
I wasn't believed either, thought I was going crazy bugs in my skin, sunburns..
I was looking back over my WCB notes today and I noticed that I first reported the full range of spread symptoms throughout my whole body in early November of 2005 and I had only had my injury the end of May of in that same year..
Thats less than SIX MONTHS!

Why is the CRPS spreading?
What is diffrent for those of you who have no spread?
What invasive treatments have we had?

ICE?
TOO AGRESSIVE PT?
SURGERY?
CASTING/SPLINTING?

~~~~~~~~~~~~~~
I remember the drug I think it is Thalomine? it makes you turn real hot if you put your hands in hot water too, we had to bring a friend out side and hose him down with a garden hose after he acidentaly doubled up on his dosage one day.. he turned red like a beet and got real hot... he said he was burning up inside on fire.. but he later said that normaly he just felt an ocasional burn here and there like a sunburn.
So well I checked my meds when my burning started let me tell ya.

Anyway I am sory you are going through this Wolf, and all of you that are just going through this now.. Be strong and believe in yourselves, I thought I was going nuts and my doctors were willing to help me think that was so..

Don't let them make you doubt yourself.. write down what you are feeling as it is happening.. write a journal and bring it into your doctors apointments.
That is the only way my doctors finaly saw the regularity of it all.. and finaly the signs of spread started showing too.. but my journal was what made all the diffrence in the world when it came to doctors seeing the real picture.

:grouphug:

First off let me say that there is medication that is sometimes taken in tandem with an antidepressant that can cause alot of redness burning stinging pain and heat... and darn it all can I remember the name.. begins with a T? I will post back when I remember it..

Then there is what my doctor liked to refer to as referred pain.. I never understood that one.. but aparently the RSD pain can echo somewhere else but aparently it's not the same?.. I am afraid just figured it was something they said to deny and belittle what I was feeling at the time, but there is information on refered pain out there.

When it came to my spread it was quick and I wasn't believed either, thought I was going crazy bugs in my skin, sunburns, cramping..

I was looking back over my WCB notes today and I noticed that I first reported the full range of spread symptoms throughout my whole body in late October of 2005 and I had only had my injury the end of May of in that same year..
Thats less than SIX MONTHS!

QUESTIONS:
Why is the CRPS spreading?
What is diffrent for those of you who have no spread?
What invasive treatments have we had?

ICE?
TOO AGRESSIVE PT?
SURGERY?
CASTING/SPLINTING?

~~~~~~~~~~~~~~
I remember the drug I think it is Thalomine? it makes you turn real hot if you put your hands in hot water too, we had to bring a friend out side and hose him down with a garden hose after he acidentaly doubled up on his dosage one day.. he turned red like a beet and got real hot... he said he was burning up inside on fire.. but he later said that normaly he just felt an ocasional burn here and there like a sunburn.
So well I checked my meds when my burning started let me tell ya.

Anyway I am sory you are going through this Wolf, and all of you that are just going through this now.. Be strong and believe in yourselves, I thought I was going nuts and my doctors were willing to help me think that was so..

Don't let them make you doubt yourself.. write down what you are feeling as it is happening.. write a journal and bring it into your doctors apointments.
That is the only way my doctors finaly saw the regularity of it all.. and finaly the signs of spread started showing too.. but my journal was what made all the diffrence in the world when it came to doctors seeing the real picture.

:grouphug:

See the Psychiatrist !
 

I would go ahead and see the Pychiatrist for two reasons; 1st- you already know you have RSD and you will need a psychatrist or psychologists as part of your medical team and 2nd-once you do, you can let your doc know (or the next doc) that its not all in your head. Just a suggestion.

Thanks for the reply....

I haven't taken any of that...so far only amitriptyline, prednisone for 6 days, and more recently lyrica. And, at times, this gel containing ketoprofen and small ammounts of other meds.

What appears to have set it off in my case was saoking my foot in coldish (55-60F) water. I'd done this repeatedly in the past when my foot was hot and burning and the veins were all engorged, and it always worked. The foot would be kinda stiff afterwards but running it under a warm faucet always took care of that. This time, probably because my RSD was becoming more virulent, my foot went completely stiff and stayed that way. The warm faucet helped a very little but then I overdid it and caused part of my foot to swell up and get very red and inflamed and painful.

Anyway, I started feeling some spread into my lower legs right as I was doing the cold soak. Probably the intense stimulus of cold sensation excited the defective nerves so much that it made it spread.

This is where the relative lack of pain in my RSD probably nailed me. If I were like most RSD victims, I could never have tolerated doing something like that to my foot. Also its probably tricked me into thinking I have a mild case, when the other effects (stiffness, vasodilation/vasoconstriction) have probably been pretty bad for some time by now.

Alnother theory...bad medication...you see, my last jar of the ketoprofen gel had been stored in too much heat and the gel had separated from the meds. The pharmacist had told me it was fine, just stir it all back together, but....
My first instance of spread (to my other foot) was a month ago, and in retrospect I had been using that gel a lot at the time. I also started feeling fleeting odd sensations in the rest of my body at that time. And more recently, the full body symptoms didn't really take off until I used the gel on the new burn/swelling...it had a really weird effect, got very inflamed and swelled up really fast and I got a weird intense electric tingling that made the toe jerk back and forth. Next morning, I had the symptoms all up both legs and also upper body.

Anyway, so its been a real comedy of errors on my part here....

Hi, when you had it in one area you know the feeling and no one can tell you the difference... My doctor said the same thing I said are you a specialist on R.S.D he said no, So send me to one that knows.. Some doctors have no clue if they ever had it you never forget that feeling EVER... Well good luck to you..