Spreading of RSD
 

Saw a neurologist today for a variety of wierd symptioms that I have been havubg after an LSB. My vision is bad so I apologize for bad misspellings. But I asked him if the hypersensitivity in my back/nck that is spreading could be a spread of my RSD because it is accompanied by burning pain (lord I hope not but asked the question anyway).

But he said to me that RSD does not spead. He said you get it in one nerve and if you are unlucky you may get it in another nerve...but it does not spread. He said my pain doc in 2009 may have "jumped the gun" with the diagnosis but that RSD does not "spread" ever so that;s just a myth and I shouldn't worry about it,

I think this may be the right guy to handle my other symptoms that I am having regarding these things that I have after the LSB...but his comments about RSD concern me. Has anyone ever heard of this? I though the spreading of RSD was fairly common based on what I've read. Does that sound right to anyone else?

So glad you started this thread!
 

Oh THANK you!
You're gonna get some great feedback from our RSD friends.

I have a hunch there's gonna be a bunch of people disputing what this doc is telling you.....
I wanted to start a thread asking about the spreading of RSD, so I'm very glad you did this.
I'll be watching real close!
I have similar issue to what you describe and am going to my Dr on Tuesday.
I have a feeling he won't know much, so I knew I can count on this forum....

Bring it on my friends!
This is a great question!

Caring
Rae
:grouphug:

RSD spreads.

Its a total bummer. But it spreads. Check out RSDSA.org. There's plenty of scientific literature on the subject.

Sounds like your new doc is not up to snuff on the subject of RSD. You may want to start searching for a new one. Look for a board certified pain mgmt doc or anesthesiologist at a good quality teaching hospital or large university. Is there a large city near where you live? If you search older threads on this board you will find other posts on the subject on how to find high quality docs.

The best of luck to you. I highly recommend finding a doc that administers ketamine infusions for your RSD. A list of ketamine providers is available on FB at "ketamine klub" or from Jim Broatch at the RSDSA.

XOXOX Sandy

This guy I am seeing now is a neurologist and am seeing him for what I believe are non-RSD issue...it was just something I asked because the spreading hyper-sensitivity and burning pain I was afraid was RSD related. I have so many issues right now that I don't know what is what and I think/hope he is the guy to deal with the other issues,

I was just shocked at his "convincing" statements about RSD not spreading because I HAVE read just about everything I can get my hanfs on about RSD and that includes this board and I have just never seen anything that says it DOESN"T spread. That just sort of shocked me, But it't not his specialty and it;s not what I am seeing him for so I'm not too concerned....yet...

Catra121, I dont know about you but when i went thru it it was so upsetting. I had a nerve injury and had surgery by a well known ortho Dr. When my burning and pain spread he was in such denial and finally sent me to 2 pain specialist who said it was CRPS2 which had spread. I respected him but it was so upsetting that he was so ignorant to facts about RSD. I went on to see 2 RSD experts and it had spread to "generalized RSD"(spread from arm to leg-leg-arm to face and scalp...) I did take articles in about RSD spreading and finally i took in photos of my extremities turning purple and swelling that he finally admitted that that he agreed i had RSD. To me it was so frustrating because i knew what my symptoms where but he made me feel crazy. Although he finally agreed he still was ignorant enough to say dont worry it will burn itself out.
There is plenty of articles about RSD and spreading and that it does not burn itself out. Hang in . momof4

Hi
 

Get a new doctor! Run don't walk,,,,,

Debbie

hey there
 

well being as Im not in the best of moods lately, I hesitated to respond but respond I must. RSD does indeed spread, and like mentioned by others, there are a great many articles, testimonies, and quite a few doctors who will attest to this. If your neurologist would like to actually speak to one of the best rsd docs in new hampshire, let me know and I'll hook you up with the number, Ive got one in LA who would also gladly educate the neurologist as well.

My RSD started in one hand, then the next. Sprained my ankle and bam, got it there as well, mirrored over to the other as well. Have C4-5 disc bulging and bam, RSD now there. Ulcers, borderline glaucoma, kidney stones, and the list goes on, all since getting this in my hand so many years ago.

If this doc does okay by you for your other issues then thats cool, but if he is so closed-minded or refuses to see the writing on the wall when it comes to RSD, like others have said, I'd be finding a new RSD doc asap.

Please take care of yourself and if my post came off sounding um bytchy, please please forgive me as that was not my intention, just having a real chitty time of it lately k

hugs :hug:
dee

Plain and simple..
 

A Dr. (or individual otherwise) who says "RSD does not spread" is indeed a Dr. or individual who does not suffer with this mean, relentless disease.. They need to go back to the books to learn more and to listen to their patients a bit more attentively!! We do suffer from RSD and we know best how we feel!! It spreads!

Sorry for your fustration and dang pain!!

Hugz, Kathy:grouphug:

Maybe there is a miscommunication with this new neuro.....he said it doesn't spread but it can show up in a new nerve. Maybe he was trying to say that RSD normally doesn't spread like a rash, slowly creeping over a larger surface area......it jumps to a new area/new nerve.

Or........maybe he's just a moron :p

I'm thinking moron at least as it pertains to RSD. Since I am currently having hallucinations, double vision, blurry vision, uncoordination and a variety of other off things...I certainly hope he is not a moron in his own field. But I;m giving him the benefit of the doubt on that one because at this point I have to rely on others taking me in for testing and doc visits and all and he seemed like maybe he had an idea of what may be wrong with me (this new thing and not the RSD) so maybe he's onto something. Maybe I need a fresh set of eyes to treat the non RSD thing and maybe...hopefully...he's the one.

But he was pretty clear that RSD does not spread from one location to another ever...that each occurence of it is something new and that it is rare for it to appear in another nerve. Just wanted to make sure that I wasn't crazy when I thought he was crazy. It's obviously NOT his specialty. I just hope he's good at what HE does...lol!

i have CRPS type 2 and honestly this crap is spreading. i dont need another dr to tell me im crazy. its spreading.

Been there, done that
 

I was also told by two drs and a physical therapist that rsd does not spread. Yeah. It does. Mine went from right foot to hip, and I also display symptoms in my right hand and back, and since my scs was pulled, my left foot. This is why people think those if us with rsd are crazy. I'm sorry that happened to you. Hope you feel better!

Spreading
 

I have been having the same problem. Mine is spreading and I can't get a doctor to ADMIT IT, that's what I think they don't want to do. I'm dealing with WC through all of this...so making you sound crazy is their M.O. Grrrrrr! :deadhorsebeat: :Oops:

its funny how this was started in february and resurfaces today.. as I went to dr appt. as I had mentioned in another thread.. I have had a mean bout of itchy painful areas in red areas and some other areas.. well for the first time I was examined from top to bother and was told flat out.. IT SPREAD>>>> my original injury was right leg. now RSD is everywhere from the waist down,, in the belly(new) now in my left arm (kinda new by cple of mnths) and my right arm(new) my back, neck, chest, and lateral areas.. these are new as well.
now I have an orthopedic surgeon, neurologist, pain management dr, and spine specialist all telling me that spreading is a definite part of the nature of RSD. they have all told me I need to be careful to not injure any other parts of body, even a little as it can cause spread ,same as surgery . so I would ask your dr.. i he is up to being schooled if so great have him come o this site , the read the RSDA new letters, or dr hoshmans research so on and so forth . if he says no.. the do what debbie said...RUN FOREST RUN!!!!!

I wish I had better news. I wish your doc was right. But I have CRPS II, and I can confirm, and there is no doubt about this, that mine has definitely spread. Although it has taken many years for mine to spread. Mine started with a nerve injury during back surgery, waking from surgery with it in my right foot, ankle with excruciating pain and with numbness in my calf. After about 6 years later my other foot and ankle started to mirror the symptoms. Gradual at first. Many months of little twings, then about a year into the spread it was nearly as bad as the original limb. 18 months or so and I was starting to get twings everywhere. Everywhere! Some more severe then others. But those other places above the waist are always random on when and where they strike and how severe it will be. But both legs & feet are a serious problem now. I will say this though, the CRPS is still most prevalent in the original site (first foot/ankle/leg to be afflicted). But the second leg/foot is running a close second. Go to google scholar and search RSD CRPS Spread.

I do hope this is not the case for you and perhaps it is something else. But I knew with mine. It was faint at first, but after some time, and worsening, I knew and for sure there is no doubt now. xoxo :hug:

I started this thread in February of last year. Since then it has been confirmed that not only did my RSD spread but it was also the culprit for almost all of my new symptoms (the others being caused by the meds the doctors were putting me on and off of like crazy people). Haven't seen the neurologist I was talking about since last April I think it was...nor my primary doctor or the pain management doctor I was seeing at the time. I think back to all the runarounds I got from the docs back then and it makes me so very angry. Reading my responses from 2011, I see that I was way too quick to try and defend and make excuses for doctors. Not the case anymore. Quite frankly...if they don't know what they are talking about then they should not make comments like he made...plain and simple. Whether his field or not, he was giving a patient bad information and if I had stayed with him I don't think I would have ever gotten proper treatment for the condition that I really DO have. Moron is right...which my new doctor confirmed when I told her that he was the neurologist I saw. Apparently he told several of her patients in the past that there was no hope, that they would die or never get better, all neurological things. They went and got second opinions and recovered or managed to live many many more years. I tell you...doctors like that are SO dangerous.

I was fixing to ask this same question. Because i have been dealing with this for many months, and now i finally have a diagnoses. I have it in my right wrist all the way up my arm. I have started having tremors in my left hand, and some pain ( not to the extent of my right hand but still not fun) i also have this burning pain from heel of foot up to my knee. My leg gives out on me quite a bit, and i rolled my ankle about a month ago, and this pain started shortly after and has yet to go away. Any time i sit down, if i try to stand up its as if my knee down is numb and goes all haywire when i try to get up. I dont know if its just me thinking its spreading or it really is :( its all so new to me..

it doesnt help i live in the sticks, with no really good doctors, houston is about an hour away, but i havent found a good doctor yet, if anyone knows of a good doctor in the houston area please let me know!

Did you get anything for the itch though?

WC is the worse. Mine is wc as well. :thud: Everytime I have a dr.'s apt. or need a script they delay the process. You got to -
:Bow:

Yikes!
 

I have had RSD for four years now. I have been told the whole time that this doesn't spread. I am sooooo frustrated by the fact that it DOES spread. I feel like I have aged 50 years in the last four. I am finding more and more that Drs know nothing about this condition and all they want to do is prescribe pain meds, give injections or insert crap into your body (ie spinal stimulator, etc). I am allergic to all the pain meds they tried and the nerve block injections were to no avail. Anywho, just venting and agreeing with the others that RSD DOES spread. Sorry to burst your bubble, Sweetie. This is a painful and relentless condition. Prayers.

I Know!
 

I know! Hahahaha! Glad to know I'm not the only one they're messing with!

the one thing that I have noticed .. is my Dr,s agree that it has spread on me but why in the hell would they not alter the dx to match all affected areas........omg how can I get treatment for all areas if they won't write it the f--- down and man up about their dx.....

I haven't been on here in awhile, but I'm glad to see that the reason for my visit has already been addressed. My RSD started 5 1/2 years ago in my left hand/wrist. I had noticed some spreading into a couple fingers on my right hand. Last July I had surgery to remove my remaining ovary...done laproscopically. I had talked to my OB/GYN dr about my concerns before surgery, but the surgery was necessary. I had some bleeding complications a couple weeks later where one incision was bleeding into the abdomen...it turned a dark maroon/purple/black color.

I ended up having to go back to my dr every day to have the incision repacked to stop the bleeding. Since then, I've had the burning pain and sensitivity in the abdomen. I don't take any meds for the pain or have nerve blocks, and I have not told any dr about the pain in the abdomen.
Now, I have started noticing the same burning pain, sensitivity, excessive sweating, etc. in my left leg (especially outer thigh and front and outer calf) and in my right thigh. It has also moved up my left arm and slightly into my upper right arm. I'm sitting in shorts right now with the A/C blowing on me and my left leg is sweating.
Since I was last on, I have been diagnosed with Narcolepsy w/Cataplexy and sleep apnea. Micro-sleeps and automatic behavior are prevalent with my narcolepsy, along with memory issues and hallucinations.

In May, while my hubby was away in Jamaica on a mission trip, I started "skin picking" (an OCD type behavior). I don't know why and most of the time I don't realize I'm doing it...I apparently do it in my sleep too. I'm afraid I may have caused the RSD to spread into my legs and upper arms because those have been the main targets of the skin picking. I go back to my sleep dr in August and plan to talk to her about this new challenge.

On a side note... What is WC?

Mine wont pay for the clonidine patch or my abilify even though my pm sent notes. Eventually (when I have spent enough money) we will sue them for reimbursement.

WC is workers comp. you really need to see a dr. and tell your ob/gyn that you are having burning in your abdomen along with the thighs.

picking is not good, esp. for rsd. I am not sure how you stand to pick an rsd site.

I've only had RSD symptoms in my legs since I started the stupid picking. I've known it was going into my right hand and left forearm for quite awhile. The abdominal started after surgery. Also, the RSD symptoms in my upper arms. started after the picking started. Not sure why I started picking, but it just started in May so I don't know if I was stressed or what. It's weird though cuz I would pick pimples and bumps in the abdominal even though it hurt. Very annoying!

Exactly!
 

:hissyfit: My doctor (not one of the IME doctors) also says that mine has spread, but also says that WC has declared it is a closed case as far as treating any other part of my body. They will only treat my original injury site (foot) and my leg up to my knee. If you have to aggressively treat this within a few months of getting it then we have no chance of it not settling in other limbs! And it's all because of WC! It's totally ridiculous because we wouldn't have it in any other part of our body if they would just treat it...Pheww! That was a mouth full! :thud: So, I just want you to know you are not alone, that's for sure!

Hello Phyllis/ OCD question
 

My doc. said the picking is from the additional stress. I have multipal medical conditions> Started PN on ankle and now it seems like it is more RSD. Can't get the ankle fixed structurely, because of the RSD. So I am stuck limping around. I started picking too, and I have no idea why. In my sleep too as you mentioned. I am not touching any place on the ankle which already hurts. I don't know how to stop the behavior. I don't drink, smoke or do anything negative with medications. Why can't I stop this? Taking Sertraline, which supposedly helps with OCD. I never did this before I had this RSD type thing happen. Loosing my home at the same time. If this is all stress related, and I acknowledge this, how does a person stop?. Even if it is just a tiny place, why do I have this compulsion all of a sudden? I don't have OCD behavior in any other facet of my life, and usually can control most behaviors. Psych is out of the question because of finances. Even my long time friend who is a psychologist who really knows me, wonders why I started this OCD. Does anyone have a solution or am I just loosing my mind? What do all of you who have this compulsion do????

I don't understand the picking either. I don't pick my left hand/wrist, which is the original RSD site. And I agree, I can't seem to stop. I've read some on other forums about OCD, buthaven't really found any quality suggestions on how to stop. I'm even checking into my Narcolepsy/Cataplexy meds to see if there are side affects from them that could cause this. I will definitely be talking to my sleep doc about it. I suppose a couple things I do (other than picking) could be considered borderline OCD...such as washcloths have to be folded a certain way.

I don't need a doctor to tell me that this wonderful RSD has spread. A few years after the main onset, I started feeling it in the area just above the nail on my right middle finger and thumb. I kept hoping the feeling in my abdominal area would go away, but it's been almost a year now, and it's for sure that burning, scraping pain. But now the legs...left especially. My jeans today were irritating it very bad. So I get to deal with the RSD, Narcolepsy w/Cataplexy, sleep apnea, fibromyalgia, etc., etc., and of course the massive constant pain in the original injured wrist...even with the nerves removed. Gotta thank God every day for giving me strength!!

I was told by my lawyer that if we can prove the spread then wc is responsible.

QUOTE=nalakity;895046]:hissyfit: My doctor (not one of the IME doctors) also says that mine has spread, but also says that WC has declared it is a closed case as far as treating any other part of my body. They will only treat my original injury site (foot) and my leg up to my knee. If you have to aggressively treat this within a few months of getting it then we have no chance of it not settling in other limbs! And it's all because of WC! It's totally ridiculous because we wouldn't have it in any other part of our body if they would just treat it...Pheww! That was a mouth full! :thud: So, I just want you to know you are not alone, that's for sure![/QUOTE]

rsd spreads
 

My RSD orginated in my my ankle from a work injury in January. 4 weeks ago I began having neck pain assoicated with a trigger point that affected the back of my head with an intense buzzing, ears ringing, dizziness, head ache with sharp pains that moved down my shoulder and upper back with the burn sensation. Also my right hand contracts and has hypersensation wrist and forarm. I seen Dr. Kirkpatrick a few weeks ago and hope to raise 10,000$ for ketamine IV 4 day treatment. However, my family doctor thinks I am just having seizures. ER doc saids the pain is not real but I believe it is. What happened to patients rights to pain_it is what the patient saids it is.

Hard to understand why drs with a medical diagnosis repeatedly tell RSD suffers our pain isn't real. Wish I could take tho dr with me for one day and let them feel what we feel for even an hour. That would shut up and treat us with the respect and dignity wee deserves". That goes for pharmacists also that question the meds as if we are drug seeking with ZERO medical information about us but have an order from our drs in the form of a prescription. :mad:(sorry I needed to vent). Ps tendancy towards picking... Could be from medications. :