Newby here. Living from pill to pill
 

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. :grouphug:

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 Hooshmand's site, some of it is a little outdated, but it's chock full of great info!!!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.

Hi, Egglet!
 

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. :winky:

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! :thud:

Lois :Heart:

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:grouphug::hug:

Nice to meet you!!
 

Aaahhh, Lois....
 

Don't ever feel that you are a bother here, or that your feelings do not matter. They are very, very important, both because they affect your health and well-being, and because they help convey the intensity of your condition. If you received a nerve-block then you were probably injected with steroids, which cause emotional feelings and feelings of strong intensity.

It is, unfortunately, extremely common for family and friends to fail in their efforts to understand what you are going through at a time like this. To be perfectly honest, in a way you are alone with the emotional aspects of a problem like this, at least in the short-term. That's what we are here for. :D A few tears can go a long way to making a person feel better, so why try to control that? Pity has nothing to do with it.

If the pain is all in one side it would be worth reading-up a bit on shingles. This illness most commonly shows up as a rash on the skin, but in a fair amount of cases no rash presents itself, and the symptoms are neurological. They sometimes begin in the lower side, back or thigh, and can progress quite rapidly down the leg. Resulting neurological symptoms can last for weeks or months. But its usually best not to latch ones thinking onto any specific illness unless there are real reasons for doing so. Too many symptoms cross boundaries in various illnesses, especially in the short-term.

My medical record was less than a dozen pages long before I suddenly became ill at the age of forty. Now those pages number in the hundreds. It sounds to me that a neurologist is probably the right kind of doctor for you to see, but one word to the wise...it generally pays to speak-up for yourself in these visits and make sure your concerns are heard. Most specialists allot about 20 minutes per visit, and sometimes walk out on you in the middle of a sentence you are speaking because your time is simply up. Be polite and pleasant, but make sure they understand how seriously you hurt. I've seen over 30 doctors to date, and I've had to learn how to deal with them.

Last, but certainly not least, you need someone to talk to. Someone who understands the challenges of sudden changes in health and what it can do to you. Good intentions aren't always enough, even from those who love us the most. There are very few illnesses or conditions which aren't worsened by excess stress, so get the stress out. There are people on here you can talk to. NT has always been an awesome support site as well as a source of information. :) If there is anything else you can think of regarding your illness, or anything more specific, I would be happy to help wherever I can. I have been studying chronic pain for a lot of years. :rolleyes: Even if you get it figured-out, it would be nice to hear what was causing your problem. My hopes go out to you, Lois. May everything turn out great and get you up on your feet again in no time at all...:)