NeuroTalk Support Groups - Wildfire spread....help!!

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Wildfire spread....help!! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/80210-wildfire-spread-help.html)

Hi,

I'm so sorry it is spreading so fast. A couple of ideas. I'm throwing them out in no special order. I take 100 mg of topomax. 50 doesn't work. 100 is much better for the burning pain. It really works well for me. see if doc will increase it. 2nd. I've had 2 scs. I'm going to look into the morphine pump. what you could do is contact either medtronics or st jude. they are the main companies that make the units. See if they have any trials going, (I heard they do). They will pick up the full tab for you if they have something going. Call and ask. THe worse that can happen is that they say they don't. Ask hospitals, drs. etc to see what is available for charity. They all have them out there. Just some quick thoughts. I hope they help

Hugs
Mary

I'm going to give time for edits. For all who posted. I'mnot poiting fingers at any one person or post. There is plenty that needs to be edited.

Re-read your post and edit out anything that remotely is flaming or arguementative.

Get back on the topic that MominPainRSD posted about.

This is a support site. If you can't add support when a person needs it, skip the thread.

None of you are in a Dr / Patient relationship with each other. Do not try and DX.

And Roz, I am not English, so IMO that has ZERO to do with a person being strong. I have known plenty of extremely weak English woman. Generalizing, especially on a forum is not a good idea. The written word like that doesn't come across very well.

I've removed the last post from this thread as things are getting much too personal, and this is no longer the supportive thread that we all hoped it would be.

With that in mind I'm locking it down for now.

Maybe we'll reopen it again in the morning for those who wish to reply to the original post in this thread, and for those who wish to be supportive in their words.

MomInRSD - an answer to one of your questions

You asked if the Ketamine cream helped with burning. The thread was closed, so I will answer here.

I use both Lidoderm patches and ketamine cream compound. I find both help, but I don't have a tremendous amount of burning - not like I envision many of you have - I have more what must be "cold" RSD. My burning is not much worse than a bad sunburn.

However, the cream does help lessen the pain. My problem with the cream is that it doesn't last very long. Maybe 4 hours. My elderly Mom lives with me, and she puts it on most of my back and shoulders before I go to work. It only lasts half the workday. I don't have a way to re-apply it myself, as I cannot reach the area it needs to go on.

The Lidoderm patches I apply to my upper arm. I have a lot of pain there. They do help, but it takes a couple hours before much relief. I sit at a computer at work, doing graphic design and photo touch up. I don't do a lot of typing. So I use my arm, but not a lot --- and the patches really help with keeping my arm on the keyboard. I wish I could cover my upper body with the patches, but your only allowed 3 a day, and they don't stick well on most of my back anyway. On my upper arm, my shirt sleeve helps keep them on. That is another reason the cream works --- it can be applied to areas that patches won't stick.

I have never had any problems with the cream making me "high" or affecting me in any way, and my Mom's pretty liberal with it, and covers a large area. Here is my "recipe"

2% amitriptyline hydrochloride
2% bupivacaine hydrochlorided
5% gabapentin
5% ketaprofen
10% ketamine hydrochloride
2% lidocaine
"in lipoderm base"

I looked on my container and the quantity says "400" I don't know if it's grams or what - I would say I get about 4 cups at a time. He's really good about it - says use what ever I need. I am not on daily pain meds, so that may be another reason he lets me have what ever amount of this - anything to keep me off daily narcotics. I usually get this refilled about every 4-5 months. It's terribly expensive, but my insurance covers it except for a co-pay.

When I was going to a pain doc, he wrote it as a 90 day supply, so I had to pay 3 months copay, but this doc writes it as 30 days, so I pay one copay. Problem was finding a good compounding pharmacy to fill it. I have to send for it - and they can't ship it to me in the winter, because if it freezes, it separates, and it's never the same.

Also, when I was going to the pain doc, he used 5% ketamine, but the neuro uses 10%. Made a HUGE difference in how well it works. The neuro, though, had always used just ketamine and lidocaine in his creams - and kept the other stuff in there from the pain doc's formula. Since I like this mix so well, he's started using it for his other RSD folks, and finding they like it better too.

My pain doc went out of the pain doc business, to just doing anesthesia stuff. Started going to the neuro for pain stuff, and it's been a good thing. He's been doing injections, similar to trigger point, into nerve areas across my shoulders for the last few months. It's helped some. I have a little more motion in my arm, and a little bit of improvement in my headache that I have had for more than a year. Injections are NO FUN though! He was one of the docs that diagnosed the RSD. Good guy. His use of botox in my RSD shoulder was what stopped the horrible electric shock pain I used to have.

Hope you start feeling better soon.

Quote:

Originally Posted by MominPainRSD (Post 476667)

Hello to all!!
I have avoided posting a thread about this, hoping it was just a flare or would calm down with meds, but I am becoming desperate and need some advice or some words of comfort at least.

To all who are new, my RSD began after ankle surgery December 3 '08. I was diagnosed 10 days later with the symptoms only in my left foot (on the top). Since then, it has spread to the right foot, to the bottoms of both feet, to both hands, now the color changes are up to both knees, both knees are swollen (they look like they have a golf ball in them), and I am having random burning sensations up both legs to my pelvis. The majority of the spread has occurred in the past month. Almost every day I wake up with more pain over more area. My hands are so swollen, I've had to take my wedding ring off. They are usually burning HOT to touch. My feet are usually ice cold to touch but BURN like they are soaking in battery acid. It never stops. The stabbing pains come and go. The shooting pains come and go. My feet hurt so badly I cannot walk anymore. My hands hurt so badly it gets hard to type (why I haven't been on the forum as much lately) and I have a hard time writing or holding a fork to feed myself.

I am now on Cymbalta 120mg (though I may need to go down on it.....my blood pressure and pulse have skyrocketed). I am on Topomax 50 mg. I am having to take Vicodin every day (which I had avoided doing until recently) just to take the edge off. I now have a low grade fever and headache (no other symptoms other than shaking and tremors.....which could be med related).

I am in SO much pain. The Pain Doc cannot see me until March 26th and wants to see how I adjust to my new meds anyway until then. He keeps pushing for the SCS which I DO NOT WANT and CAN NOT AFFORD. I have no other options of docs within 2 hours of me. I simply do not know what to do???

I read about the Ketamine cream on here. Does that help with the burning? What pain meds do most of you take? I am DESPERATE for help. We are trying to get me a wheelchair (motorized......I cannot use my hands to push myself) but need a script for it for insurance to pay for. Nothing can happen fast enough. I literally cannot leave my house now. I can barely leave my bed.

I try the Epsom salt soaks. I can't say they help much. I burn so much on my feet, I cannot bear it. We are about to lose our house and COBRA. No one else will insure me with RSD until my husband can get a job. I am so desperate and under so much stress......I'm sure that is why I'm spreading so fast, but I can't help it.

One good spot of news (literally). I managed (actually, it was my husband's doing) to get the local TV news here to do a story about RSD!! They came out and interviewed me and my husband for 1 1/2 hours last week and they're going to run a 2 part segment next Tuesday and Wednesday!! I am determined to do whatever I can to get "OUR" RSD name out there!!! They took video shots of my black/blue feet and my red/blue hands and I talked about how we need more research to be done and to raise awareness of the disease!!! I hope I did ok and I'll let you all know how it turns out.

In the meantime, ANY help anyone could offer would be so much appreciated. I am usually more careful about how/what I post......I am just in so much pain and scared and desperate and spreading like wildfire. Thanks and gentle hugs to all!! :grouphug:

I have removed a number of posts that had taken this thread off topic and re-opened this thread...... and am requesting members to stay focused on the original topic and to please only post here if you can offer support or relevant information on the topic.

thank you

ohh hun iam so sorry that this is happing to you . i know how hard and how scary it is to have it spread so fast. i am so sorry that the epsom salt didnt help at all. i wish that there was something that i could do. i would really call the PM and see if they will take you early since you are having such a hard time

talk to you soon
love ya tons

carrie