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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Hi Angi,

I agree with Skooze and everyone else who has commented about the effects of Neurontin. My pain management doctor had me on it at the beginning of this horrible nightmare that I live (6+ yrs) now. We increased the dosage slowly in order to get it at the highest level he felt necessary for me. It was horrible and I experienced many of the same side-effects.

I'm not sure what type of doctor you go to but it is very important to find one that will listen and work with you diligently to find the best solution for your pain. I don't know if you were ever told this or not but I was told at the very beginning that I had to learn to accept what has happened to me; otherwise it would be very difficult for me. I am still trying to accept it hence I have sunk into a deep depression because of my RSD.

Take a look at my history below and you will see what I have gone through. My RSD has consumed by body. Please get help from your doctor or get another opinion before your pain gets any worse.

God Bless you,
Maria :angel:

[B][U]My History[/U][/B]
August 2000 - Plantar Fasciitis left foot (Endoscopic surgery)
Sept 2000 - Plantar Fasciitis right foot (Endoscopic surgery)
Nov 2000 Started experiencing a number of RSD symptoms but did not know what these were at this time (the surgeon ignored my complaints, so I went for a 2nd, 3rd, and 4th opinion)
Dec 2000/Jan 2001 My RSD diagnosis was confirmed by three different doctors.
Jan 2001/Feb 2002 12 Spinal Blocks, Physical Therapy, numerous meds, and finally trailed the SCS box with some success.
March 2002 - Spinal Cord Stimulator implant
March 2004 - Replacement Spinal Cord Stimulator (due to leads going bad)
Sept 2004 - Removal Spinal Cord Stimulator implant (in order to complete MRI studies)
January 2005 Spinal Cord Stimulator implant
March 2005 Diagnosed with Systemic RSD along with internal organ RSD attacks
October 2005 Intrathecal Infusion Pump implant
Nov 2005 till present monthly morphine pump refills as well as medication therapy. I use an Electric scooter to get around indoors and regular wheelchair when taken outside.

I noticed that you mentioned your RSD was going full body now. May I ask what the doctor(s) are doing for you or do they have any plans?

I'm curious because I was diagnosed RSD systemic early last year and I have a spinal cord stimulator & a morphine pump. When I have the RSD organ attacks they are the worse. It feels like something is crushing the organ and then cooking it in the oven on 500 degrees.

I was just wondering if you knew of anything new that may be coming out soon. I have not met anyone yet who has RSD throughout their body.

Maria :)

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