hello - Reflex Sympathetic Dystrophy Message Board

leons-boo_face · 10-21-2003, 12:51 AM

hi my name is patti and i have had this horrible condition for 2yrs. i got it from a fall just 3 weeks after having carpal tunnel surgery. it teh took another 6 months for a doctor to diagnose me. they kept telling me it was just my carpal tunnel symptoms coming back after the fall and they would be tempoary. yeah right! so, after the 2 stellate ganglion blocks that only lasted about 36 hours at the most and too many visits to pain management with physical therapy to de-sensitize my hand, here i am. i am out of work, i work at a bank. i was in proof operations and had to leave since the constant keying made my hand more on fire if you can believe the pain can get worse, then i went to be a teller, but the use of my hand still made the pain worse. my husband died of a heart attack 12/28/02 and the stress from that has increased the pain. i have a wonderful primary care phyician who totally understands. i am now on 2400 mgs of neurontin, 2-20mg of oxycontin and the oycodone instant release 5 mg/4 capsules a day. these are a life saver. i was leary about going on the narcotics coming from an addictive background, but i do not abuse my meds, because i know the consequences of pain. the fire has decreased and only acts up when it is really cold out, the air conditioner or fan is blowing directly on it or i over-use it. like i said b4..stress plays a big part in my pain acting up, and this past weekend was my 1st wedding anniversary without my hubby, so i dealt with a lot of pain and as you can see, its after 2:30am so I am having one of those no sleep nights. i also am stressed about having to get a biopsy on my liver and due to the rsd they are doing a laporoscopic biopsy and i will be put out. i also have numerous back probles, tears, herniated discs, spurs, etc. and just found out 2day that i will get a lumbar epidural on 11/5. i am praying that the epidural will give me relief more than the blocks did for my rsd...i hate pain and am so jealous and angry at my husband for dying..he was the healthy one and he had a heart attack. i am 43 and feel like i'm 70. i also have diabetes and am not sure if the pain in my neck/shoulder is from neuropathy/radiculopathy or my rsd spreading. it has the same "feel" as the rsd but not sure.

i am so sorry for rambling..all i wanted to do was introduce myself and say hello and that i'm glad i found this site. i never was one to go anywhere for support until i lost my husband and found a great one for thsoe who have been widowed. i can honestly say, if it were not being for me to be able to "vent" there, i would have killed myself a few times. so i pray for you all now that this horrific condition would become curable and that you might enjoy a pain-free life.
once again, thank you all for listening to my rambling and god bless. bye 4 now!
patti from nj

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Jesus Is Lord!

brighteyes_007 · 10-21-2003, 06:12 AM

Hello and welcome to the board.

I ma so very sorry to hear of you loss. I can not imagine going through this SRDS without the love and support of my husband and family.

I think you have every right to be mad. Be mad as hades!!

I know this board was a God send to me and I have written many tear filled, angry, and rambling post to people who can understnad what exactly is going on in my life becuase they are living it.

WE are here just for that pupose.

USE the board any time and lots of times to vent .

Believe me it works.

God Bless

Brighteyes

Lizotte · 10-21-2003, 06:49 PM

Dear Patti:

Just to clear things up, I believe you can only kill yourself once. (please refer to statement that you would have killed yourself many times)

What a story. Your life has certainly been sad and losing your husband. That is the most stressful thing that can happen to anyone. No wonder your RSD flares up. It does sound like to me that you have wonderful MD's that are looking after you. Your PCP sounds like he knows about RSD. You will find that many MD's won't. My OB-GYN MD yesterday asked me to explain to him what RSD was. That's why I started the thread How to describe RSD. He wrote it down to look up after I couldn't explain it well. He wanted me to compare it to another disease. Be sure that the MD doing your epidural and anything else writes on the front of the chart NO NEEDLES ON (which ever side you have RSD on). He may remember it, but I will tell you the person putting in an IV will go on whatever side they want. Get it in the MD's orders. They won't go against that. I mean your only a patient.

Welcome, I hope you find friendship, advice, and lots of laugh on our board. It truly is a Godsend. Enjoy! We are all in the same boat, of course then we would overload it and it might sink and then we have to think of life jackets, I would like a purple one. How about you?

LiZ

cattys · 10-21-2003, 06:56 PM

Hi Patti,

Welcome to the forum.

I am sorry to hear of the loss of your husband. I hope you can stay around here on this forum we would love to get to know you better.

((((Gentle Hugs))))
Cattys

sharon1030 · 10-21-2003, 07:25 PM

Hi Patti and welcome,

I'm glad you found us. If you stick around, you will find that this is a very supportive place to come when you need to vent or have questions or whatever. I'm very sorry to hear of your husband's death. It must be so hard for you.

I also have diabetes. Do you have Type I or Type II? I've had Type I since I was 12. I'm now 32. I've had RSD for the past 17 years. I know how hard it is to deal with. We all do. That's why I think this is such a supportive place. Hope you stay around.

Sharon