This mess started Feb 3, 2012. Since then, the pain in my foot has been almost unbearable. The docs have tried all kinds of tests, etc but still are having a hard time w/ diagnosis. It's between RSD and Charcot-Marie-Tooth. I'm taking big doses of Percocet and Neurontin which just barely keep a lid on the pain.

Seeing a prof of neurology at a large university nearby but the appt isn't till 6/28. Seems like a lifetime to me right now.

This evening I seem to be developing a low fever 99.9 I'm here at the house alone and having a pity party. I think reading about the problems everybody else is having may ease my pain for a while.

Bless you all.

Temperature regulation issues can be a factor with RSD. Try taking a bath with Epsom salts. I find that I can "reset" my system this way most of the time.

Has your doc referred you to a pain management specialist yet? A sympathetic block can be used for diagnostic purposes, and the earlier it's done, the more helpful it can potentially be.

Head over to the RSD forum, and go through the stickies.

If you haven't discovered Dr. Hooshmand's site, some of it is a little outdated, but it's chock full of great info!!!

I will definitely head to the RSD forum, thanks. I have had three injections in my hip. None of them have made any difference. But I am hopeful that the Prof at University Hospitals may have the answer. Today was a perfect storm of pain and depression. Feeling a little better now.

Thanks for answering.

A sympathetic block is into the spine. If you have a positive response, your eyelid will droop. Pain relief can be from hours to weeks, and for some it can mean remission. Hope this info helps.

You didn't mention whether your pain was sudden-onset, or if it had developed gradually over a period of time. If so, how long has it been an issue? Few things are harder to deal with than continuous pain, especially if its characteristics include feeling "dangerous" or health-threatening. The inclusion of neurontin in your treatment suggests that the doc suspects the pain may be nerve related, which means that it might simulate any type of pain you've ever felt. Whatever the case, it is important to find a control for the pain before it has a chance to become a somatic "memory" within your subconscious. I've been dealing with severe nerve pain for nearly ten years now, and know how crazy it can drive you to feeling if given half the chance. The bad news is that traditional pain meds are often ineffective when it comes to nerve pain. It can help to try doing whatever you can think of to occupy not only the mind, but also the entire central nervous system in general. Read...listen to music...watch a really absorbing movie. As silly as it may sound, these things can really help. Only so many signals can be processed by the CNS at any given time, which means that keeping everything busy can detract your attention from some unwanted things. Whatever you do, try your best to stay in a happy and positive mood. Again, I know it may sound contrite for me to be saying something so simple, but I promise it has a real potential to help. I truly hope that the specialist comes up with some answers for you, and that you are able to rectify your problem before too long. Good luck and the very best of wishes!

Hi,
The pain was sudden onset. I just woke up in pain one morning. Oddly, the pain was on the outside of my lower leg. Bad pain! Then it moved to my hip, back of my knee and finally settled into my foot/toes. Majority of pain in toes. Foot up inner arch, above arch and some of my ankle is just numb. I have wracked my brain and can't recall any injury there.

Once my grandchildren have gone back to Australia this Wednesday, I will seriously try what you suggest. I have an iPod which should help. In the past, I enjoyed listening to audio books. Maybe that would be a start.

The worst part is that my family and even my husband have no idea of how painful this is. Of course, I would never want them to experience this themselves, but I do feel left out of things.

One last question. I burst into tears at the least little thing. I never was like that until recently. I'm sure you know that doesn't help me to be pleasant to be around. Why do you suppose that is? The Meds?

Looking up my medical history: (all within the last 2 mos.)
Sympathetic Block (University Hospitals Division of Pain Medicine)
Selective Nerve Root technique transforanimal (sp?) approach - 2 injections one for L5 and the other for L4-5
EMG
MRI Lumbar spine w/o contrast

There's another half inch of paper here, but I'll leave it at that. Nothing worked. Period. Definitely no droopy eyelid.

As I mentioned, I am hoping my appt with Prof of Neurology will help. The most common response I get from doctors/techs is, "I see some damage there, but not enough to cause all that pain."

I'll stop. Don't want to be boring or a whiner. That's waay to easy to do nowadays.

Thank you for your interest. You are definitely a minority!

Lois

With severe, constant pain, it will absolutely change your mood. You have nothing to apologize for.

Regarding the sympathetic block, failure to get the droopy eye, can mean that you don't have RSD, but it can also mean the block wasn't performed correctly. Had the doc that performed the blocks had experience with RSD previously?

I understand that you don't want to upset you're loved ones, but you also shouldn't suffer alone, in silence. One of your family members might be able to be an advocate for you. There is always someone at NT that will listen, and provide support as well.

Hi I'm Donna.

And just wanted to say Hi.

But also wanted to say I totally understand. Wanted to also
say, Lit a love. You did a great job and thanks.

I can totally relate to the pain.

I am having lots with my back personally.

Donna

Lois,

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Here are a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene