No, can't have any more blocks either BP and pulse too unstable.

So there is nothing really effective you can do? OMG that's horrible. Have you tried the special K coma? or could you try it? I don't know much about it but I have heard it is having relatively good results as a last resort treatment.

I'd certainly like to try some type of ketamine infusion but I'm having trouble getting that to happen. It would have been my first choice, cut to the chase treatment. At the pain specialist they wanted to do other things first like the nerve blocks and maybe SCS. However, if I can't have a nerve block, I'm not sure how many of these other procedures I can have either. I'm kind of inbetween old plan and new plan now.

It took nearly a year to get a diagnosis and it's now just over a year that I started having symptoms. I've been to 11 specialists. I'm pretty frustrated at how slowly everything has gone.

Yet, in many ways, as this disease goes, I feel fortunate that nobody ever tried to say it was all in my head or blow me off, because I had prominent physical signs -- mainly the ever worsening swelling in my right leg, now all the way up to my waist. In fact one specialist didn't think it could be RSD/CPRS because my leg was way too swollen. Another big part of the problem with diagnosis was I had no known precipitating event. For a long time they were looking for cancer, like a lymphoma. But doctors were always trying to get to the real root of the problem and I realize everybody who has this isn't or wasn't that fortunate. It's just taking too long for me to get to a point where I feel I'm actually being treated, and treated successfully. Reading these various forums I still feel lucky overall though.

So the answer is I hope eventually something will be done. But things are still in progress.

I hope you are doing better and getting some rest.

From what I am understanding there are a lot of risks associated with the Katamine treatment so that s why the hold it til last.

if i wasn't so far it wouldn't be half as hard to see the obvious swelling, I have always been chunky though so even when I was at my peak physically 19 trying to get into the air force I stilled weighed 20lb over what they wanted. I was just born a Harty Dwarven lass to a family of hardy dwarven people! Don't have that problem this last week it seems!

So a total of two years? with no precipitating event ? from all the stories I have hear it seems fast. I back read nearly all the intros ... had the time couldn't sleep and all that. Some made my cry some made me mad back on topic... it took so long for me to get diagnosed I too felt very let down when I found out there was no 'cure' and the only way get the correct treatment since its case by case is trail and error. so keep at it bug your doctors silly til they find something for you.

Has either one of you discussed and epidural infusion with your doctors instead of a ketamine infusion? That is part of what I have been doing for the past week. There are many supporting articles/case reports regarding the success of 4-6 epidural infusions and the principle theory behind it is similar to that of a ketamine coma but with much less risk/cost. I'd be happy to share specifics if either of you have any questions about it.

Tessa

Hi again Tessa, I hope your day is going much better and sleep is once again becoming your friend. I just was curious as to the infusions... Are they working for you, the ones you are doing now? I surely hope so. Keep us posted. Bright smiles and soft hugs Tessa.

No, I haven't spoken to my doctor about any other treatments yet I was only diagnosed February 19 and the gaba is the first treatment we are trying. and i would be happy to hear about another treatment option.

I feel so stupid because i do it almost every time. Once i get a good day a 6or 5 on my pain scale i see all those back logged things and start in on them. creating the pain that will haunt me for days.

Today I was around lv 7. My cat was going nuts about the kitchen drawers so I opened them... guess what was in there not just utensils a mouse! He scampered to the back and was gone. I yanked all three out and there way back in the cabinet was a mouse hole! and my little friend had left a little present in every single drawer! so what does stupid me do... bleach and wash everything! Then even worse I got down on the floor and puttied over the hole. This sounds fast but it took nearly all day between the breaks I needed and the fumes. I ended up just laying on the floor for a quite a while afterwards until I could right myself again. I really need a flow chart or app or soething to tell me hey this is not a good idea stupid. Remember what happened last time.

How do you ladies and gents ever get out of that loopy cycle?

Hi Llynnyia,

I would try to continue with the Gaba for at least 4-6 weeks. Most meds will have one side effect or another but more often than not the body will adjust over a period of 4-6 weeks (+/- for each individual) of taking it regularly. Keep a log of your side effects along with the timing of when they start, then peak and then later taper this will help you and your doctor work on timing of medications to reduce unwanted side effects during waking hours if/when possible.

What's the medicine in the epidural? I've had several epidurals with steroid for back problems in the past that went well but that was before this RSD pulse and BP complication. Not sure I could get an epidural if I can't even have a nerve block.

Also, what if anything could this do to help systemic symptoms I have like the passing out from BP and heart rate fluctuations, severe Charlie horse like muscle cramps, bone changes (loss) in many parts of my body fron the RSD, etc.?