NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Spreading of RSD (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/145219-spreading-rsd.html)

nalakity 07-05-2012 06:37 PM

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

Originally Posted by alt1268 (Post 894689)
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:


painman2009 07-05-2012 11:11 PM

Quote:

Originally Posted by alt1268 (Post 894689)
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:

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.....

PhyllisJ 07-05-2012 11:34 PM

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?

alt1268 07-06-2012 06:17 AM

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.

Quote:

Originally Posted by painman2009 (Post 894786)
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.....


alt1268 07-06-2012 06:20 AM

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.

Quote:

Originally Posted by PhyllisJ (Post 894791)
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?


PhyllisJ 07-06-2012 03:20 PM

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!

nalakity 07-06-2012 05:16 PM

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!
Quote:

Originally Posted by painman2009 (Post 894786)
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.....


ginnie 07-06-2012 06:24 PM

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????

PhyllisJ 07-06-2012 10:53 PM

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!!

alt1268 07-07-2012 10:50 AM

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]


All times are GMT -5. The time now is 09:37 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.