I'm a retired nurse, so I have basic knowledge of the nervous system, but I have never researched neuropathy on the cellular level. You should be seen by a neurologist to diagnose the cause of your pain. Unfortunately, neuropathy can occur without any known cause. When the pain and burning are terrible, a #10 on the pain scale of 0-10 with 10 being the worst pain, I would soak my feet in ice water and it sounds silly, but Aspercreme did seem to help at times. Aveeno body lotion with menthol to cool the skin helps sometimes. Have you tried a TENS unit? It is transcutanious electrical nerve stimulation which is used for spinal and/or larger joint pain such as the shoulder or knee. The 4 electrodes can be placed on your low back to stimulate the nerves that have been affected. Hopefully you have pain meds or meds for nerve pain specifically such as Neurontin, amitriptylline, Lyrica and other tricyclic antidepressants do help when taken at the right dose you can tolerate. My pain gets the worst at night, I get very restless and go out to the couch so I can elevate my feet on the top of the couch so nothing touches my feet. I wish for comfort for you and better days ahead.

my PM dr prescribed a compound of the lidocaine, etc.... comes in syringes & i give myself the "cream" shot! i rub it in w/my hand. just temporary pain relief - but, hey, a few min. helps! ask about the mix - the dr. calls it "keg gel". wishing u relief!

I got this cream from the old BrainTalk years ago and took it to my old Pain doc. He's no longer doing office hours, just anethesia, so my Neuro prescribes it now. My family doc does all my other meds, but won't, or can't (??) because of the ketamine.
This is from a document I saved a couple years back... I would have to look up the current script.. I pretty sure the neuro added baclofen to it. My container says quantity "400" I think it's grams... I would think its about 2-1/2 cups. It spreads really well and a thin amount works. My issue with it is that I use it on my upper back and shoulder blades where I can't reach, and so I need someone to apply it. I would love to have a way to put it on myself. My doc says use as needed - every 2-3 hours on a bad day. I have seen others on here with creams that were not as strong that docs told them every 12. I have only had the burning, well, bad burning, a month or so now, and for that it works several hours. I have been using this though, for pain in my arm, and feet... for that it works maybe 3-4 hours. I use it in places it is hard to get a lidoderm patch to stick.

I had a bit of a time finding a pharmacy to compound it. For a while I had insurance that would do it 90 day mail order (that's what this amount is) and they had their own compounders. But, their "base" was not as nice, and the medication didn't go in as well, or work as well. Now I have a place a couple hours or so away that does a lot of compounding. The base they use makes it a lot nicer. It feels greasy when you put it on. I wait to put my bra and shirt on for a couple minutes, then it's soaked in. I have never noticed it staining. The pharmacist has someone in his family that had some sort of skin issue that used a ketamine cream for pain and he kept trying different bases till he came up with one that absorbed into the skin really well. I am convinced that it makes a difference. The pharmacy makes it up and mails it to me. You need to make sure it does not get overly hot or freeze - or it changes the way it glides on and absorbs in... becomes nasty! So, if I ever need it during the winter, The pharmacy will hold shipping till the weather is good enough to ensure it won't freeze in shipment.
2% amitriptyline hydrochloride
2% bupivacaine hydrochlorided
5% gabapentin
5% ketaprofen
10% ketamine hydrochloride
2% lidocaine
"in lipoderm base"

I don't know what your pain is from, but aside from one person on here the universal advice is to never use ice on RSD affected people. I know for myself it made it flare horribly when tried in a PT thing before I was dx'd. Be careful using ice or cold for RSD, it can make it spread and/or get worse.

Hi all,

Thanks for all the information and suggestions of dousing out the pain burn! (the compounds, creams, meds ....and support!!) This is the most practical information I've gathered that I just didn't get from my docs...for some reason, (selective listening???) they just don't
hear the urgency of the question and never have direct answers!!

Only those who are on the RSD train know and understand through personal experience!!

Mike,
thanks for providing so many articles and references...they have given me so much insight into the physiology of the burning embers that reside in our limbs!!

Daylilyfan,
you mentioned it's hard to apply cream to your back and shoulder blades areas...I thought it would help if you got one of those back brushes that you use in the tub....maybe if you wrap a wash cloth around the brush, you could apply the cream on the cloth and be able to reach your back that way!!
I hope everyone can find some relief..I think of everyone everyday..

Thanks from the bottom of my toes, soles, heels...and heart.

Hope4thebest xoxoxox

The cream is expensive - with the insurance my employer has now, for scripts that are not on on of their 3 tier "lists" the cost is pretty high... my part is $175 per refill. I might use a little more than 1/4 teaspoon to cover my entire upper back, and left shoulder. It glides on so smooth, you don't need much. I think if I were to put it on a cloth, I would be wasting too much. I have tried putting it on a rubber kitchen spatula before. That works ok, but it's not easy getting it spread around. My elderly Mom lives with me, and when I am home, she is happy to put it on... but it wears off while I am at work, and sure would be nice to be able to put it on during my lunch hour! Oh, well...

That is a good idea, I would try it if the refills were $10...

My severe full body burning , alloydina was brought undercontrol by ketamine infusions- it took hundreds of them about 75, 000 dollars worth, now to maintain the severe burning on my back and legs i use pain meds but its the lyrica 150mg twice a day that controls the burning for me. but when it gets out of control with pain to where i cna nno longer tolerate it mentally i have to go for a ketamine infusion. hope this helps CZ

Hi Hope4TheBest,

My Doctor was always honest with me and told us that no one is exactly sure what causes RSD however it is thought to be caused by a malfunction in the sympathetic nervous system and that the nerves are sending the wrong electrical signals.

Theres an article on American RSD Hope listing all of the potential causes that could cause RSD though none of them have been proven at the moment. Heres the link if you are interested:
http://grants.nih.gov/grants/guide/p...AS-03-120.html

I saw this article a few months ago also saying that a new study has found nerve damage in the small nerve fibres in RSD which I thought was interesting and made a lot of sense - it's SO nice to actually read an article where they actually believe in RSD and don't just chalk it up to being psychological like some people do unfortunately.

The link to that article also is:
http://rsds.org/3/research/oaklander_study_2005.html

I haven't found anything that has helped with the burning pain at the moment unfortunately. Ketamine helps me a little however it only reduces the pain by a small ammount; it doesn't take it all away. My Doctor doesn't like me taking it too much either because of my age - he said that it could screw up my hormones etc. Lyrica helped me a little with some of the cramping pain that I get though it made me very tired and I put on about 30lbs whilst on it so decided to come off it.

I hope you find something that can help you soon and you are in my thoughts!

Alison

Hi! did you get any answers on the Neruogen. The burning is one of my biggest problems and I was wondering if you or anyone else had relief with it.
hopeful

Hi Hopeful,
Neuragen is a natural topical blend of oils that I think also comes in a cream...It is difficult to find in stores, but can be ordered online. It is expensive for a small amount but I recall reading in a post that someone had great relief from it..if you do a search for neuragen for neuropathy, you can find a few sites describing it. It is specifically for neuropathic pain..
I tried to walk through a store tonight and my feet are on fire...very red and swollen and burning..elevating helps followed by an epsom salts soak..My shopping days are over unless there is an electic handi-cap cart in the store which most stores don't have!!
I'm sorry you have that probelm, too!! Someday, we'll have some relief!!
hope4thebest xo