Hi all!
Lots & lots of new handles & some older ones too. Not sure if many of you remember me as I haven't been here in a very very long time..........I have had to face some of life's hardest ever slaps..........but I am still hanging in there.

But since last October I have been dealing with what is for me a new symptom. I will be doing nothing in particular at all & all of a sudden the top/back of my head, including my ears even, will start burning. The burning of RSD that we all have with this dastardly syndrome. The burn that feels like molten rock, red hot coals &/or how crushed glass would feel to walk on. Only like I said it is the surface areas. If I do nothing to contain the pain, eventually that burning sensation will cover the whole of my body. I also turn a bright red everywhere & am red hot to touch. My 4 yr old grandson was here when it happened one time & he says "Grammy you are ssssoooooooooooo HOT!! (when he touched my ears) and sssooooooooooooo red too." Man I was in PAIN! It was the same burn as when this started in Nov 03 in my feet. I took an extra 1200 mg of gabapentin & I also took my BTP meds. I have found the quicker I take this stuff when the burning starts the quicker the intense pain resides. It use to happen approximately 3 times during a 2 month stint, then maybe 4 to 6 times in a 2 month time frame. In February it happened 4 times & 3 of them were within a 5 day time frame.

HELP!?!?!? I had told my PM doctor about it last Dec. I only see him every 2 months. He told me to keep track to see if stress set it off at all. On a few occasions perhaps but NOT most of the time. I suggested maybe Upper Stellate Ganglion nerve blocks so as of next Mon 3/8, I will have a series of 3 on the left side. Does anyone have any other suggestions I could try to put a halt on this/these new symptoms. This is scary to me. I would hate to have this horrible burn take over my whole body permanently. I don't even know what type of doctor to go to besides the one I am seeing now. Unless perhaps a neurologist??

I live in north central California, close enough to Sacramento, if anyone knows of a good neurologist who treats RSD patients a suggestion would be helpful.

Thanks alot & hoping this finds ya'll as well as possible & as pain free as possible.

Debby

Dear Debby,

I started lidocaine infusions - 300 mg each - last July. I've had 6 to date. They have helped with the terrible burning pain. It takes more than one before you start to feel any real impact from them - they build on each other. And ideally you need to get them about 3 weeks apart. I also take Topamax 200 mg a day (but I am not that big, about 125 lbs or so). Topamax has helped my head pain, it is usually written for migraines. My RSD started in my right shoulder from a brachial plexus stretch injury in Nov 2006, and spread to the back of my head and my cervical spine in the summer of 2008.

Another thing that helps me is Voltaren gel on my scalp. I put globs of it in my hair and on my neck. I find it is MUCH more effective on my head than anywhere else on my body, where I use the Lidoderm patches and the Flector patches. It takes a few minutes to work. I go through at least one tube of Voltaren a month.

I know that burn in the back of the head that you are speaking of well - I also suffer from excrutiating head pain that makes me vomit and can keep me in bed for a day or 2 at a time. Do you also feel like there are bugs crawling on the back of your head? I hate that!!

But those painful episodes occur much less often since I have started the lidocaine infusions and have determined what my triggers are (the biggest one is using my arms for anything strenuous).

I am sorry that your burning is so intense, and I really hope you get it under control soon. Good luck. Feel free to let me know if you have any questions.

XOXO Sandy

Some time ago I had a burn with my ear that it felt like fire as well. For me that part did settle down though I do still get severe ear pain/pressure which they can't figure out. I went to my neuro and he did a brain ad ear mri. I did the lidocaine infusion but for me it increased my pain unless it was a fluke and we are all different. Have you called a major hospital near you or a teaching hospital neuro dept. I would explain you have rsd and see if they could suggest someone. I agree about taking something before the pain gets out of control. I wish I had more answers for you I am in a similar situation right now in terms of new symptoms and what typs of doctor to go to. Hang in there

Thanks for you replies. I never even thought of Lidocaine infusions. I don't even know if they do any of that stuff around here. I have had this disorder since Nov 03 in both feet, with occasional burn in my hands that SGB's have put into remission right away. But this intense burning..of my scalp, my skin just goes ON FIRE......OMG!!! can get so out of control if I don't hit it the second it starts. I am in a BURN right now. I have had 5 episodes in the last 2 weeks. From the shoulders up to almost the very top of my head is on fire. The tops of my hands & arms, not the undersides though at all. It is so weird how this happens & to where it happens on my body.

The skin gets so tight feeling..........I think that is because I get so full of edema where I turn blotchy & bright red. I look like I have massive hives I have my youngest grandson here & this is the 2nd time it happened with him visiting. I really hate it. It also scares the hell out of me. I don't think I could stand it if I felt this way all the time. The longest one of these has lasted is about a 2 hrs. That was at first before I hit it with extra gabapentin & the BTP meds in a heavy dose. I tried Topomax in 2004. Worked wonderfully for the burning pain. BUT I had a strange reaction to it. Happens very very rarely. It knocked me into something like a manic high. Similar to what someone who is bi-polar goes through. The shrinks call this type of episode an 'organic manic high", organic because it was induced by a medication. Antidepressants do the same thing to me.

I live not too far from Sacramento CA. There is a teaching hospital there so I guess I could call & see who they recommend. I know they have a pain clinic altho I had a bad episode at their clinic. They accused me of being a drug seeker. I did end up with a huge apology from the head of the department over it but it left a very bad taste in my mouth. Thanks for all the suggestions.

Now if I can just remember to do any of it *LOL*

Debby

Take pictures if you can. So you can show your docs what happens to you when you flare. Especially if you've already had an "episode" with one of their people thinking that you are just drug seeking. What is that saying - "A picture tells a thousand words"..? And lidocaine has made somwhat of a difference for me, and is much more easily approved than ketamine (which I have been trying to get approved for several months now). Its gotten rid of a lot of the horrible burn, especially where the RSD spread in my right leg.

The best of luck to you, Sandy.

Sandy,
The accusation was a long long time ago...........back in late summer 2004. It turned out to be a HUGE mix up on their part not on mine. And like I said the head of their pain clinic, who also writes & lectures for one of the big pain web sites(I think it might be the American Pain Foundation) gave me an apology & wrote a letter apologizing to my primary care physician. They had called them & told them I was a potential drug seeker so it had started to spiral out of control but the minute I found out I got the ball a rolling to straighten them out right away. But like I said it is a teaching hospital so I believe I will call their neurology department & find out who they have RSD patients see. I sure hope there is some one.

I am hoping that SGB's will help for the time being. I have Medicare only so I have no idea what lidocaine infusions will cost me...........

Debby

Debby, I remember you and it is good to hear from you again, but NOT these new symptoms. Have you thought about RSDSA.com I went to their annual meeting last year was great. Jim Broatch is always so helpful. Give them your zip code and may have a specialist close to you. Also, zip code,
you'll receive name and phone number of group support leader. Often they know who is close and good.
I'm sorry you have had some rough times. We are all happy to hear from you and happy to support you. Let us know how things go, your friend, loretta with big soft hugs