Please don't give up yet on the Gabapentin. It is not at all uncommon for this medication to take 4-6 for your body to adjust to it. If it does end up helping you with the pain control then it would be so worth it!!

Swelling can be caused by many other things. Have you tried soaking in a warm bath with about 2cups of epsom salt? Doing this several times per week can be really beneficial for swelling etc.,

Sure wish there was an easy answer for the Barometric pressure and its affect it has on us. I used to think moving to a warmer and more stable climate would help but, after reading these boards I have come to realize that even with better weather conditions the pain is still to great. Do you keep a journal?

Wishing you a the best possible day!

Sleep happened! some time after I posted 5:14 i found myself face down on my desk around 6:30 am pst went to bed, slept til noon! hooray!!! Exhaustion won out in the end.

2 cups? I have been using 1 but our tub is every shallow unless its so full any movement sloshes water out it doesn't cover the top of my thigh. Tonight I will try the higher salt content and see if it helps.

Yes I keep a Daily journal tracking pain, swelling, stiffness, activities, brief emotional state, and odd notes that how I found out beans cause swelling in me. It was also this last years worth of journal entrees that made it easy for my new doctor to understand and finally diagnose me.

Thank you maybe your well wishes were the ones that finally sent me to dream land by looking at the time stamp it very well could have been.

Sorry, I just saw this. First, so glad you got some sleep. I'm pretty screwed with the pain meds. Even tramadol makes me sick on my stomach. If I get desperate, I take dramamine or use a scopolamine patch and have to have a full stomach and then sometimes I can take tramadol. Narcotics make me violently sick on my stomach no matter what I do. I have severe bleeding and bruising problems with NSAIDs now after long term steroid use for autoimmune diseases. Otherwise there's nothing I can take but tylenol which is not much.

The fellow at the pain med docs told me there were some newer generation meds similar to gabapentin for neuropathic pain that didn't have some of the side effects like the peripheral edema I get but they didn't want to give me anything until I'd had several sympathetic nerve blocks so they could see how they did. I had complications with pulse and BP on the very first nerve block and can't have more so that plan is dead in the water now and still no pain meds.

FWIW, I've found Delsym, a cough medicine which is dextromethorphan, at OTC dose does a pretty good job helping with some of my symptoms, both the local (pain and swelling) and systemic (unsteadiness, pulse and BP fluctuations, etc.) ones. It's an NMDA receptor antagonist like ketamine but much, much weaker. But it does help with sympathetic nerve pain and the other problems associated with it. It keeps me awake though. I still use it every day and take a OTC dose Benadryl at night to help me sleep.

I've also been using pharmaceutical grade DMSO diluted to 50% as a topical on my entire right leg for pain, inflammation and swelling. It's irritating to my skin so I usually only manage to use it once a day instead of three times but it helps. Some gets in your system so it may help with systemic problems as well. You just need to be careful that your skin is clean because it carries other things in with it.

Epsom salts in the bath do seem to help. I feel tingling (a good kind) in the affected areas when I soak in it that I don't feel when it's not in the bath water.

Hope this helps. Hang in there and good luck.

Denise

You to, I hope those blocks work for you, I can't imagine not being able to take my meds on days that i have run out or missed a dose oh boy i know it.

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.