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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Betty,

I understand somewhat where you are coming from. I too was coming up on a year of being off of work last Sept 2005 and there was just no way that I could return. I had been kidding myself for the past couple of years by going to work in severe pain.

Below is my background on what I have been through. My RSD started in both feet, legs and lower back. When I had numbness, swelling, and burning in my hands. I prayed that it was something else but deep down in my heart I knew that my RSD had spread. After going to a few doctors, I was given the confirmation of this. My hands felt exactly like my feet. This is another good indicator that you can tell if it is spreading or not.

As far as having the same pain in your arm and across your chest, have you told your doctor? I would start there. Hopefully, you have built a good relationship with him/her. They should be able to tell if the RSD has spread and if not, they should be able to send you to someone that can.

As for disability, you need to think about how you feel physically now versus how you felt last year, are you better or worse? I was told several times to consider filing for social security disability but it was very hard for me to do because I felt like I was giving up and surrendering to this disease. I realized that I had come to a point that physically, I just couldn't do it anymore to myself. It was hard giving up my job when I was only 38 yrs old. I had graduated from college summa cum laude but that didn't matter anymore. I had to take care of me now.

I admire the fact that you are a nurse. I wanted to be a nurse at one point. I wanted to work in the peds nic unit. The closes I got was a Medical Assistant at a Pediatric Office, but then I got my degree in technology instead.


[B][U]My history with RSD:[/U][/B]
Aug 2000 I had Plantar Fasciitis Endoscopic surgery on my left foot.
Sept 2000 I then had Plantar Fasciitis Endoscopic surgery on my right foot.
Nov 2000 I started experiencing a number of RSD symptoms.
Nov 2000 Early Jan 2001, I saw a total of 6 doctors including a specialist at Cleveland Clinic, who sent me back home because he could not help me.
Late Jan 2001 I was diagnosed with RSD.
Feb 2001 - Nov 2001 I went through a number of spinal blocks, physical therapy, & medication.
Feb 2002 I trailed the Spinal Cord Stimulator to see if it would benefit me any.
March 2002 I had my 1st Spinal Cord Stimulator implanted.
March 2004 I had my 1st Spinal Cord Stimulator replaced due to a bad lead & battery problems.
Summer of 2004 My RSD began to spread, my hands were numb & arms were burning. My legs would give out without warning and I also experienced incontinence
Sept 2004 I had my 2nd Spinal Cord Stimulator removed so that an MRI could be done; my Dr. was suspicious about a possible Syrinx in my spinal cord. A Syrinx was found in the neck area. My family doctor and pain management doctor agreed that I was permanently disabled and would not be able to return to work. They told me that I really need to accept what has happened to me.
Oct 2004 I went to 3 different Neurologist who all agreed that the Syrinx was not the cause of my problems (numbness, legs giving out, & incontinence).
Dec 2004 I saw a hand specialist regarding the pain/numbness that I had, only to be told that I did not have RSD (who did this guy think he was after everything I have been through, telling me such a thing). He recommended that I see a Rheumatoidologist.
Jan 2005 I went to see a Rheumatoidologist just because my family doctor asked me to and I was diagnosed with systemic RSD in which all extremities are affected. I also started having RSD attacks in my internal organs. (These are so very, very painful) The only thing I can do is take oral morphine and cry/scream through each episode until it is gone. Normally it lasts for 8hrs or so but one time I had an episode that lasted for 3 days.
I also had my 3rd Spinal Cord Stimulator box implanted on 1/12/05.
Feb 05 May 05 I continued trying various medications to help calm down my pain.
May 05 I applied for Social Security Disability
June 05 July 05 I continued trying various medications to help calm down my pain (none of them worked, except for large doses of morphine) I trailed tested the morphine (Intrathecal Infusion) pump and it seemed to help me.
I was also turned down for Social Security Disability, however I appealed right away.
Aug 05 Sept 05 I continued taking large doses of morphine to get my body used to it.
Oct 6, 2005 - I had the Intrathecal Infusion Pump implanted and began therapy to adjust the amount of medication that I would need.
Nov 2005 - I was granted Social Security Disability due to permanently disabled from systemic RSD and severe depression.
Dec 2005 Present: I continue to see my pain care specialist each month so that my morphine pump can be refilled. We have currently increased my dosage to over 50%. I am down to one oral morphine tablet a day. The goal is to eliminate all oral morphine tablets.

Not only do I suffer from systemic RSD but also severe depression as a result from this horrible disease.

Note: I use an electric scooter in the house to get around and I have a wheelchair in our car for when we go out.

Good luck Betty. I hope I have been of some help however please see your doctor soon about your additional symptoms. After all that is why they make the big bucks.... :)

I'll keep you in my prayers.
God Bless
Maria :angel:





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