Unfortunately the only thing that has helped me with the pain is nerve blocks & heat. I know, why add heat to a limb that is already hot? But if you think about it, it's a hot "sensation" from the nerves - it isn't really burned. Heat really helps calm my agitated nerves down. I think the burning sensation is a part of RSD that there is no real solution for. - Good luck, Shelley
Hi Shelley - Thank you for the advice. Now that I think about it, when I take a hot shower, the pain does go away but it comes back again as soon as I sit down and start working at my computer. It probably also doesn't help that I have to use a footpedal all day for transcribing reports.
I'm thinking maybe there is something I can rub on my leg, like Ben Gay or something. Any thoughts on this?
Hey Norine, my epidural infusion took my burning pain away. Talk to your doc about it, and/or about the SGBs, those are your best shot at stopping the burning I think. I can't remember what all you've done already, I'm sorry, my memory's bad.
Hi Ocean - Thank you for the tip on the witch hazel. I'll try that today.
Hi Cathy - In reference to the treatment I have received so far, I have only been given a nerve block in my ankle. That took away the electrical/shooting pain completely.
I have a primary care doctor's appointment next Tuesday so I guess I'll tell him about the burning and feverish type pain in my leg. I kind of get the feeling that I'm just supposed to live with this and the doctor that I am seeing on Tuesday doesn't want to hear my complaints. In fact, he literally said last time I saw him, "If I listened to every patient's little complaints, I would never get out of here." He also said that it was ridiculous that anyone thought I had CRPS because my foot would be shiny and red. The very next day, my ankle popped and I was in excruciating pain. Because he said I didn't have CRPS, I iced my ankle down for the next couple of days until I saw my podiatrist for a regularly scheduled appointment. She diagnosed torn ligaments and shin splints. Her final diagnosis after a couple of months was CRPS. I stopped seeing her because my pain was really at tolerable levels.
Norine, DUMP THAT DOC RIGHT NOW! If any doctor told me "If I listened to every patient's little complaints, I would never get out of here," I'd tell him that that is what I am paying him for, and since he refuses to listen to me, I just won't be paying him, and I'd get the heck out of there and would NEVER return, and I would NOT pay any bill that came to me from his office either! geez, don't waste your money by going back to him, there must be *someone* else you can go to!
You need to find a pain management clinic/doc (an anesthesiologist). Tell the doc you do see every single complaint, symptom, feeling (emotional and physical) you have. Write them down on a sheet of paper each day (I do that to help me keep track of my meds, and how i feel day to day). Sometimes it's a pain, but it's important to do, it will help with social security too if you have everything documented.
Another thing. My hand has never changed colors (to red or purple or blue and mottled), not once, and I *DO* have RSD/CRPS/Type 2. Not all people have all of the symptoms, and not all people who do have the same symptoms have them to the same degree. RSD is a tricky little monster, and believe me, it is a monster, and many docs *still* have no clue what it's all about. That is so sad, cause there's probably lots of people out there that have rsd and have no clue thanks to misdiagnoses, doing the wrong things, like you did, like using ice...
Please go find yourself a good pain doc before you end up with it spreading up your leg, or worse to 2 more limbs, or more. My primary care physician is my PM. I don't see anyone else, except for my psychiatrist every couple of months for depression and ADD treatment. There's no reason for a primary doc, he can't do anything for me. If it's an insurance thing where you have to have one, change your doc!
Hi Dayton & Cathy, I know I was wrong to ice my ankle but I really believed the doctor when he said I didn't have CRPS.
In reference to it spreading with ice, this may sound silly but my right hand is really bothering me. On June 6, I got a rosebush thorn stuck in the knuckle of my hand. I pulled out the thorn but the next day, the top of my hand was inflamed and painful. It then bruised and the knuckle still appears bruised and is painful. My 5th finger is very numb and I'm getting those feverish type pains up my arm now.
Cathy, if this doctor doesn't listen or help me on Tuesday, I will definitely take your advice and find another doctor. We have no insurance, however, and are getting assistance from the County. Luckily, I work for a large pain management practice (out of my home) and the doctors there have been more than willing to answer my questions. I guess I just need to ask.
Well, thank you for your help. Take care and have a good weekend.
Sorry to hear you're having all this. I got to agree with Horsie Nutt. Any doc that says he can't be bothered to listen to every patient's complaints is overloaded and burned out. You need to help him relax some by alleviating his patient load by one. I know it's tough finding someone with your other concerns ($), but I'm sure you'll be able to find someone near wherever you are.
As far as what I do for pain relief:
1. not use the effected regions as much as possible, but I do keep wiggling them. I use a wheelchair everywhere and have an electric (cheap from the paper) for in the house. Use it even to go the powder room. This allows me now to stand and walk when I most need to.
2. I take Methylcobalamin B12 all day long (This is like an instant pain-killer for me) Won't help everyone, but is definitely worth a try. It's over-the-counter.
3. started a gluten-free diet 2 weeks ago. The swelling went down immediately and has stayed down except in the late afternoon on some days. The shooting pains in my legs and arms has gone away, although this could be normal fluctuation. The burning pain hasn't been affected yet, sorry.
4. keep my feet elevated and not being touched even at work. no shoes, no socks.
5. I avoid temperature extremes hot and cold. 75 to 82 are my limitations for not being affected.
I hope you get lots of suggestions, Norine, and something ANYTHING helps! Do hang in there.
Norine, I'm sorry you are in such trouble with burning pain. I can't really help you there but I agree with the others when it comes to your internist. I can't believe he said that to you!!! He is not in the right profession. He is not the doc for you. You need a doc who will take the time to listen to you. If not find one who will listen. Remember you matter. Take care.
There is always hope....
I hope you have a joyful, peaceful and pain tolerable Christmas and New Year.
I don't have any answers for you about the burning either. Wish I did. That is one of the most bothersome things about RSD to me. I can deal with the cold, but when it turns red and hot, it's really bad. I know that you already know what to do with your primary doc. He/She sounds absolutely horrible. I also can't believe he/she said that to you!