Did you undergo a stellate ganglion block at the time of your second surgery? Did the second surgery help, make you worse, or change nothing?

Those meds are a small list of the many combos out there. Each of which should only be introduced one at a time, after a reasonable trial period. There is no magic formula.

What does little relief mean? What is your current pain scale on a regular day with your current meds? What was it without any medication?

What glove?

The WHY question. This a complex neurlogical disorder that has no simple fix.
If you and your family haven't accepted that this is a life altering syndrome as severe and disabling as, let's say, cancer, than that is where you need to start.

Some go into remission. That is why we undergo stellate ganglion blocks. There is that hope always early on. It is also a diagnostic tool to confirm RSD. It gives you periods to recharge without pain, or at least less pain.

At some point you'll make a decision that the effort for a certain procedure, or side effects of a medication, isn't worth the relief you receive. We all have to figure out what helps by personal trial and error.

There is no surefire cure as of today.

You can certainly learn strategies to cope with RSD. I'd suggest starting with the Stickies.

Thanks Lit Love,

1) The trigger thumb was prior to Dx of RSD but after symptoms.

2) I have taken different meds and we have had to narrow it down to what I am currently on due to side effects.

3) On a regular day using all things I have to control pain, it is 6-7.
on a good day it is a 5-6, without meds prior to blocks a def 10, without meds now range from 8 to 10 ( and I only know this because I couldn't afford to refill my meds, which I only let happen once & will never torture myself like that again!)

4) I have a glove that my OT ordered for me, it is a full length ISOTONER THERAPY GLOVE, it protects me from wind, if my kids breathe on my arm etc.

5) I have NOT accepted what it has done to me mentally and physically, I am starting to accept that it is out of my hands, that there is no cure and remission is what I must pray for daily.

I am grateful for finding this site, it is nice to have people to talk to. I am going to take what I learn and hopefully help my family understand better.

Regarding the glove, how many hours a day/week do you wear this?

Everytime I go outside. If I am reading to my kids and at night at bedtime in case hubby moves the covers around.

I do desentization daily and it has helped me be able to touch certain things. Water is still bothersome and anything cold is horrendous.

That has to be reducing your range of motion. Has your doc approved this? Have you tried Lidoderm patches as well?

At night, experiment with laying on your side (your back to your husband) with your "bad" had resting on a down pillow away from any covers, without the glove.

While water falling on my hand hurts (the shower), still warm water feels great (pool, ocean, tub w/ Epson Salts.)

Yes, my Dr. knows about the glove. He agrees with you about the range of motion so that is why I have reduced my time wearing it to what it is now instead of never taking it off.

I will try this suggestion, thanks so much.

I try to not take a shower due to the pain of the shower hitting my arm. I like my bath time, I can gently ease my arm into the warm water and that is where I do most of ROM exercises. The hard part is getting out of the tub and having the cooler air hit it....ugh, it seems like I am paying for that 30 minutes.

Things can always be tweaked, but from my experience, this is the kind of range I live with daily. BUT, I try to have a few hours at night in the 2-3 range to recharge. It can make the difference between becoming miserable or content for me. IR opiates can help accomplish this. Not a fan of Oxy though, it made me feel intoxicated...

Night time seems to be the worse part of the day for me. Early morning is when I have my *easiest* time. I absolutely hate taking oxycodone/ those types of meds, however once the dr. introduced it into my cocktail instead of Lortab, I went from extremely irritable to somewhat mellow. So for now, that is what I take.

My Dr. advised me about the SCS. After a lot of research and discussion with hubby, I just don't know if it's right for me. Plus, I believe surgery to be the reason for my RSD to begin with, I can't imagine having it in my back or full body and feel so sad for those that do.

By the way, thanks for taking so much time on me!

There are lots of options even with opiates. YMMV. I've never taken OxyContin (time released), only Oxycodone (immediate release) during a trial run when MSIR started to bother my stomach. For me, generic MSIR didn't give me the same narcotic high as Oxycodone did.

If you're taking OxyContin, again, their are other options like Avinza or Kadian (super pricey.) So, just because you like one drug better than another, there still might be better options within that family of drugs.

Even deciding on how you and your doc want to procede with dosages of IR and TR is complex and can be played with to see what works best for you.

BTW, the acceptance thing is a process that will take many years. I should have said that before.

Dear gatorsmomma -

Allow me to add my two cents. There are a number of true therapies out there worth pursuing, notably ketamine infusions from someone who knows what s/he is doing. Ditto blocks with Botox, Infliximab (Remicaide), etc. These are all treatments that offer better result in the relatively early stages of the disease - where you are now - when the CRPS is associated with a neuro-inflammatory process, than later on, when it's maintained by the brain itself, at which point the true treatment options become significantly more limited. ("Non-dominant unilateral" electroconvulsive therapy being one of the options, even though most ECT docs will only give it if you have significant "co-morbid" depression.)

That said, at least in my experience, the pain got more manageable as I hit the 5 year mark, even if, at the 8 - 9 year mark (without effective treatment, I was disqualified for entry into then strickly regulated ketamine trials because of other pre-existing medical conditions ) I developed other neuropysch conditions that are now debilitating in their own right. Even with years of meditation practice and pretty high level of equanimity.

To tell the truth, even with manageable pain levels, the last few weeks have been some of the worst since this thing started. (And my apologies to all to whom I have flaked socially of late: you know who you are.)

Bottom line: the sooner you seek out ketamine treatments or the like, the better off you will be in the long run.

take care,
Mike