Some of you may recognize me from the TOS forum. I am finally making my way over here to try and learn about CRPS II as I have recently had that added to my diagnosis. I am still not sure if that is what I have as one of my Dr.'s disagrees. At any rate, I was hoping to get some information from some of you here.

I have been reading some of the threads and find them to be very informative and helpful, but would like to also ask about personal experiences that some of you might be willing to share.

For instance, is anyone seeing a Dr. in the Santa Rosa, San Rafael, San Francisco area that they could recommend??

Also , what kind of med.s are you taking and what types of P.T. are you doing??

I was diagnosed with Tos in 2003 after an injury in 2002, had a decompression surgery in Nov. 2005 and have been doing Peter Edglows home program since. My meds. are Neurontin, Norco, Effexor, diazapam and MS Contin.

I am wondering about adding an anti -inflamatory to my med.s even though there is some tyelno int the Norco, which I take almost daily.

Thanks so much for your help!!
G ~

Hi G ~

Just wanted to say a quick hi and welcome! We have a few people with TOS problems also, you're definitely in the right place, but sorry to hear about this recent diagnosis. It's quite common for doctors to disagree on that with RSD but since none of these "neuropathic" problems seem to have a definitive dx procedure you're best assuming that it probably is what the greater number agree on.

In the last analysis you need to control the pain, so going with the flow can't hurt and might help...

We all seem to take a variety of different meds, not only because we all react differently to the disease, but each stage requires different kinds of relief. And many of us have other medical complications..

My main RSD med is neurontin, I seem to be the only person it suits, but at a low dosage it provides enough relief to push the pain into the background while still allowing me to function - I can't function at all on higher doses of it, though.

Anyway, just wanted to say welcome!
all the best

Hi G,
I want to welcome here. Everyone is kind and friendly.

I was DX with RSD before TOS. I live in S. Cal so I hope someone here can help you with a Doc up north.

I have had RSD for 5 years now. I have been on every med. so in my case it would be easier for me to say what I haven't taken. I was miss DX for first 2 years with a torn rotator cuff with pinched nerves running down my arm.

I only have RSD in the right arm, shoulder, and hand. I also only had TOS in my right limb.

I hope to do some warm pool therapy down the road a bit. I had to have spine surgery 2 months ago.

It is really vital if you have it to get DX right away. You would have a better chance of remission. Hugs, Roz

Roz,

I recognize you from the Tos forum, Hi there ! and Artist thanks so much for the warm welcome and the advice.

Do either of you take any type of anti-inflamatory? I ask because I had a bad flare over the weekend and went into the emergency room and was given Toradol i.v. They asked if I took an anti- inflamatory regularly and I don't, other than what is in the Norco.

I asked my PCP about the Toradol, and he wasn't excited about giving it to me as he didn't have any pt.'s on it and wasn't "well versed" in it.

So, I decided to ask around the forums and see what others are up to and get back to him with what they do. ( Can you believe it has come to this!?!)

Thanks you Guys,
G ~

Yes, G,

I have Naproxen for inflammation, I also have arthritis, both forms, too...but I try to take it as seldom as possible because it's a NSAID and I've spent the last year getting rid of the helicobacter pylori bacteria, which did disappear, that had caused a stomach ulcer which has been slowly healing, gets a little better week by week but sooooo sloooowly.

Naproxen works well, lasts longer than ibuprofen, but as you can imagine nothing like that is good for the tum...juggling these meds is such a trick!!
all the best

[Debby]

Hi & welcome.

I see a Pain Mangement doctor over in Mill Valley. Which is not far from downtown San Fran. It is called Bay Area Pain Medical Association. Call Information & they can give you the phone number. I don't live over there I live east of Sacramento. Hope that is helpful.



Artist,
You are not the only one who can take Neurontin (gabepentin). I don't have any side effects from it anymore at all. And I take a pretty high dose of it. But it kicks the burning pain in the butt. And it also kicks the neuropathy sensations in the butt too. What gives me problems is Lyrica. Now with that I have gained weight & I sleep ALOT from it. I have to take Provigil to try to counter act the sleepiness as I can almost fall asleep standing up at times. *LOL*

Well time for bed for me here............

DebbyV

Thanks for the info. Debby!! I can start there and see if that Pain management program will be able to help me. I have been reading up and am still learning about RSD; but I think Artist is right, controlling the pain is what matters.

Thanks again for your posts everyone. I really appreciate your help.

G ~

[moonstar]

welcome G.... i totally understand about having to take the provigil to counteract the effects of everything else..i also am on lyrica...and have no energy to do much..i was wondering why i was not losing weight ,as i eat hardly anything anymore, i am still falling asleep sitting up most nights and in the morning (after i take all my meds) i still fall asleep for 2-3 hrs..the provigil helps in the afternoon. i get to do at least one thing a day..then sit down and nod off again.starting to have severe twitches in my hands..holding something one mminute and then it is either flying thru the air or being dropped on the floor...very scarey..have no control of it....don't want to add it to the list of all that is going wrong..but as usual have no choice.. wishing everyone a peaceful and pain-free new year...linda

I appreciate your sharing with me. It is very unsettling having your body respond in such unusual ways. I made a cup of tea to drink while I got online, took one sip and it fell out of my hand as I was reaching for the coaster to set it down !! It's maddening !!

I am trying to differentiate which things are from my Tos and which ones might be CRPS II.

I went to Southern Ca. for the Holidays, 6 hr. ride, a major feat for me, got home and slept for 24 hours the first day, most of the second and have been up since 2:30 this morning!! My feet are burning more than usual and I am noticing that they are becoming more sensitive to touch, very, very, dry and I need to have socks on at all times to be comfortable. I need to wear 2 or 3 pairs or my toes hurt like crazy and feel like popsicles! ( that stupid old song comes to mind.. )

Oh well...

Thanks again for saying Hi!!

G ~