Coping with RSD, Reflex Sympathetic Dystrophy

Coping with RSD, Reflex Sympathetic Dystrophy
I was in an accident in 2001 after which I started having intolerable pain. After seeing several different Doctors, undergoing Physical Therapy, and taking pain killers that left me unable to perform physically and mentally, I was eventually diagnosed with RSD, Reflex Sympathetic Dystrophy.

My fingers started locking up (with burning pain) when I used the keyboard continuously and got stuck around my coffee cup or anything else for that matter. I cannot use my arm to do anything repetitive or even extend it for any period of time.

Sometimes my palm is sweaty and hot, another time it is really very cold.

My nails break easily, I am unable to sleep at nights because painful cramps wake me up and they refuse to go away. RSD pain is debilitating as it limits my ability to be productive and to produce quality material because of my loss of ability to focus with such severe pain.

There were times when I was unable to cope as a Mother and Wife and I was difficult to live with. I am currently on medication that helps me to cope with this debilitating RSD and enable me to function.

Sympathetic Nerve Blocks

I have to talk about my worst nightmare.

First of all, when I went to my Primary Care Physician to let him know that I was in agonizing pain, he looked at me like- I don’t see anything wrong with her- I sensed that he didn’t believe me and was reluctant to give me a leave of absence from work. All said and done, he sent me to all kinds of specialists at my insistence, none of which could provide diagnostic test results to show that my pain had a source. One Specialist told me I had Carpal Tunnel Syndrome, dismissed me with instructions for a few weeks of therapy and then told me to return to work.

I did as I was instructed. The Physical Therapy only made the pain worse. I went back to work and found myself unable to focus, unable to recall simple information. I was trying to work even though I was in severe pain. Mental anxiety took over as I could not understand why I was not performing like I should. I set high standards for myself and was never satisfied with mediocrity. I ended up seeing a Psychiatrist when my Sister told me that I was not coping, my personal life was suffering as well.

Eventually, I was referred to Dr Anthony Kirkpatrick a RSD specialist. He confirmed that I have RSD, Reflex Sympathetic Dystrophy .. UH .. never heard of that before!!!

Dr Kirkpatrick recommended a series of nerve blocks. This can be done with or without being anaesthetized. Of course, I chose to get my nerve block under anaesthetic. There is no way I would lie still on that table if I saw that really big needle coming towards my neck.

These nerve blocks have helped me somewhat. I find that for me, the pain becomes tolerable for a few weeks after the blocks, then it’s all downhill again. The blocks subdue the nagging pain, but the fingers still lock up, I still get severe cramps that wake me at nights and the pain worsens when I use my arm to do just about anything.

My Husband who has been there with me for the majority of my nerve blocks, told me that I rant and rave and disclose all my secrets when I am recovering. While the anaesthetic is wearing off, I feel like I am riding on a wild roller coaster and I can’t seem to find my way out, it also seems that all kinds of information is coming at me. It’s scary and maybe this explains my wild behavior. I am scared to death of roller coasters.

There is a horrible side effect from having nerve blocks. My Right eyelid droops and makes me look Hideous. Thankfully this is temporary, or no more blocks for me. I keep out of sight after my nerve blocks.

Dr Kirkpatrick has recommended Sympathectomy, where the nerve is permanently severed. I have rejected this procedure as I fear that I would have a permanent drooping eyelid (possible side effect, not happened in many cases, but I won’t chance it). Sympathectomy would have the same effects as the nerve block. I would be rid of the nagging pain but could still possibly have the cramps and the severe pain that comes with using my arm. But I will go for the Sympathetic Nerve Blocks just for whatever relief it offers me.

RSD Is Not Recognized By All As A Debilitating Disease.

I have seen other RSD patients in which symptoms manifest itself. Patients like myself look perfectly normal so it is not understood by some people why I am not out working for an employer. One Doctor I went to told me that there are those in his profession who believe that RSD pain is not real. They can see no physical disability so the pain does not exist. Of course, I never went back to his office. Doctors like that who misdiagnose the condition can cause necessary care to be ignored leading to irreversible damage as this disease is progressive. Physical therapists can also exacerbate the condition if they are not aware of RSD. Physical therapy left me in severe pain after each session. They discharged me when they realized that I was not improving.

The Symapthetic nerve system is responsible for our fight or flight reflex. In RSD patients it is constantly activated which leads to pain. I cringe in discomfort and pain when anyone holds unto my affected arm. I experience tremors just for no reason at all.Muscle cramps are frequent and leaves me incapacitated for as long as it lasts. Shaking hands or just touching can be embarrassing as my palms are so sweaty or extremely cold. Even when I am doing nothing there is that nagging pain that irritates me and affects how I function. This leads to stress which seems to exacerbate my symptoms and vice versa.

The Pain and mental anxiety is real when you have RSD. Early diagnosis and treatment is extremely important to prevent spreading of the symptoms.

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