Warning for Profonol for RSD & Chronic pain sufferers
 

Thanks Kitty, I've actually been on the same med at 30 mg every morning for the past 4 months yet the pain still comes.

At this point, I wish I'd never met a GI doctor. The pain still comes and goes and I'm scared to death the RSD is now spreading to my right hand, arm and shoulder since the Profonol was pushed through without pain meds last week.

My pain that had been down to 0 has been a steady 8 and I've spent the past week in my bedroom crying in pain. When the Profonol kicked in, I dropped dead weight down onto the exam table on my RSD side with 0 support from the staff. This is the worst pain I've had since before I went inpatient for Ketamine last November. I'm back on all pain meds I can possibly take & they're not even touching the pain. If I'm lucky, I occasionally get a 45 minute reprieve when they all peak at once.

I do have very small veins as the anesthesiologist noted :rolleyes: which can make any medication burn more which I'm used to. But this was like nothing I've felt ever before in my life and that includes natural childbirth to 3 children and the pain that led me to the point of no longer wanting to live before I began Ketamine last year.

Small veins or not, no chronic pain patientt, especially an RSD patient should be given Profonol as an anesthesia without being given Versed or Fentanyl first. Another option you're against the pain meds is for them to di
Ute the Profonol with some Lidocaine and saline and inject it more slowly. It should NEVER be pushed in straight as it was done to me.

PLEASE make sure you always ask ahead of time what anesthesia you are being given, especially if it's a short procedure (Profonol is a favorite for short ones) and demand to be given Versed or Fentanyl (ask your PM doctor for his opinion first if he's not doing the procedure) and make sure they give it adequate time to work. You should feel like you had a few drinks by the time you get to the OR.

I hope this prevents someone else from going through the same thing because if there is a He'll, I swear my right arm was stuck in it for a few minutes. I though I did my time there with my Ex!

*****as for Topomax, I'm back on it at 300mg a day and once again, my stomach feels perfectly fine so I have no idea what's what but ifnit's Topomax, the only thing I'll say is it seems it acts up when there's a change in my eating habits, I have to fast for tests, I get viruses or I suddenly am eating a lot of new foods or go too low carb for awhile.

Hope you're all feeling better then me tonight.
:grouphug:

Dawn

So sorry for your setback. Keep thinking positively. You got to 0 pain before so you can do it again! Please, next time insist on a virtual colonoscopy.

Have you tried Trans Cranial Direct Current Stimulation. I had uncontrolled abdominal pain and this treatment stopped it in its tracks. Still no abdominal pain eight months later.

Take care and better days are ahead for you!

Hi Ballerina,
I think it was an earlier message of your's where maybe where I read about the virtual colonoscopy, I hadn't known about it before. I tried to find a doctor to do it and they were all in Philly and booked even for consultation until October. Coming from NJ, I'm still not used to the amazing shortage of doctors out here in PA. As much as I wanted to, I just couldn't let this go on for another two months without getting it checked out. Since my RSd got bad, driving is my biggest challenge so I'm somewhat limited how far I can go for a doctor and to visit my family :(

I've never heard of the Trans Cranial Stimulation. Did you have it done specifically for stomach pain? It seems my problem is inflammation fromthr RSD. Where did you have this procedure and by what type of doctor? I'd love to know more because I know this pain will be back and I'll still have no idea what to do about it.

All of my upper and lower GI tests came back negative. Both my pain management and neurologist believed the symptoms were from CRPS. I had the treatment in January at Beth Israel Hospital in New York. I had a significant reduction in overall pain, and the abdominal pain vanished. Although my overall pain levels eventually returned the abdominal pain thankfully did not.

I will probably be doing a booster treatment in the future.

Please look into future virtual colonoscopy. I live in a rural area and there were several locations within 30 minutes of my home that offered the test.

Hope this helps!!!!!

If you need more info please feel free to PM me.

Take Care!

I take 100 mg Topiramate (generic for Topamax) each morning for mood stabilization but initially thought I couldn't because of the gastric side effects. However, my doctor set me up on a regimin of pro-biotics, not antiacids. I take 2 Alines or comparable probiotic capsules at lunch daily, 2 servings of Activia yogurt nightly, & 2 servings mornings along with 1 serving of DanActive. That has solved my problem, or at least decreased it greatly.

Good luck. I agree with you...I'd hate to give up topiramate, because it's been a wonder drug for me.