UntunedStrings

Close Reflex Sympathetic Dystrophy

Due to several surgeries on my right foot, ankle, & lower leg very early on for a mild case of CP: right hemiplegia, by 7 I started displaying symptoms of RSD/CRPS. It wasn't till 6 years later, at 13, that I was properly diagnosed, & then another 2 years till I received proper & adequate treatment. I'm currently 22 and have received wonderful care for the last 7 years through two clinics that have drastically improved the quality if life that I have versus what it was like those first 8 years

Treatments

Lyrica Working / Worked

Much more tolerable that the Neurontin. No gastrointestinal side effects, very limited to no (dependent on the quality or any sleep of the night before) cognitive side effects. I can function and attend most classes and functions through the course of the day. When it is increased there is marked tiredness and dizziness for the first few nights only, not during the daytime.

Neurontin Not Working

At 13 I was given 300mg ten times a day. Didn't work whatsoever, in fact it made things worse. I couldn't function at all, school was nearly impossible, I couldn't concentrate or think straight, and I had horrible side effects. To top it off, I felt no improvement or lessening of the RSD symptoms.

Oxycodone Somewhat Helpful

It helped with the pain, but I did not like the way it would make me feel slow and sluggish during the day, inability to concentrate, foggy, delayed reaction time. Withdrawals were horrible and if I had a good day and didn't need to take it, I'd end up having to due to the severe withdrawal symptoms.

Epidural Injection Somewhat Helpful

Worked in the beginning, but after 3 months of getting them every week they weren't much of a help

Nerve Blocks Working / Worked

I went through a 10 day trial for it and found it to be near miraculous for me. I in that week and a half my opiate consumption was cut by 30-40%, I could fall asleep and stay asleep for most of the night & bear contact to the affected area on the good days. That was something that had been taken from me 12 years before hand. A completely internal system by Medtronic was implanted. It's helped immensely, though the drawbacks are pack revisions & limitations due to the leads in the spine.

Morphine Working / Worked

I started my oral opiate treatment with it 6 years ago and went back to it after being off of it for 3 years. I feel the best physically and mentally on this narcotic. all others have caused various side effects or disruptive synergistic affects from other meds.

TENS Working / Worked

I took this for several years for insomnia that progressively worsened due to the RSD. In about 10 years I had only taken a max of about 3 mg at bed time. In the later years the tolerance started building up fast to it, but for those 10 years it helped me get to sleep.

Patient-controlled analgesia (PCA pump) Working / Worked

I've been on IV PACs twice. The first following a muscle transplant & graphing 16 years ago, hooked up for about 24 hours. The most recent was with Dilaudid this past July for nearly a week due to a severe RSD flare. Withn 36 hours all symptoms were under control. It helped immensely but made me severely nauseous and nearly 7 months later my appetite has not returned and my eating habits (amount & frequency) dropped drastically.