Re: Question?

July 14, 2003

Hi Cass, Don't ever apologize for asking a question and I don't

consider any of your questions to be silly. Nothing is silly about

wanting to know more. Anyway the more you know about RSD the better

treatments and meds you will get. A good patient is a well informed

patient. So ask away.

Now to answer your question. Everyone is different as far as the

symptoms of RSD.

Everyone is also different when it comes to the amount of pain, the

damage to nerves, bones and muscles, and if and how long it takes for

the RSD to spread.

As to the burning pain would you believe that some people don't have

burning pain.

When I started with RSD that was one of the first symptoms that I had.

Mine was really bad. When my RSD became fulll body the burning pain

was all over. I have to say it has been my experience that either the

burning pain has decreased in how bad it hurts or I have gotten more

used to the pain and it doesnot bother me as much. It is hard for me to

tell which it is. I also have two stimulators to relieve the pain and

pain pills. These help decrease the burning pain also. I hope I have

answered your question. Of course this is just my experience. You have

to understand that everyone that has RSD experiences different levels of

burning pain and also different areas where the burning pain is. I have

also noticed that the areas that I have had severe burning pain for

years, some of them the burning pain has decreased a bit. I do have

nerve damage in many of these places so that could be the reason.

If you have any other questions please ask. I will be happy to try to

answer them. Take care

Hugs,

babs

July 14, 2003

Cass,

This is somewhat how the RSD works.

There are 3 stages that are definately known....and possibly 4...all depending on who you talk to.

Sometimes, you might have symptoms of Stage 1 and 2, Or, you might have symptoms of Stage 1 and 3. Or, Stage 2 and 3.

With this disease, you never know. Not everyone here has the same kinds of pain, same kinds of meds, same kinds of doctors. Just like our bodies are different, that means our pains are different, our meds are different, our treatments are different, and our doctors are different.

A way to put it better is like this:

Our Sympathetic Nervous System is like a blue print of our body, just like you'd have to make a blue print of a hotel before you start building it.

Where ever the Sympathetic Nervous System in our bodies can go.....the RSD pain can be felt, even though you don't have the RSD in that body part. Its just the way the nerves are.

So, pretty much, where ever you have nerves at in your body, which is everywhere....you can get RSD.

Now, since everyone has a different "blue print", that means we are all unique. Like our thumbprints, no two people has the same thumbprint, nor does two people have the same Nervous sysytem. Which is the reason why there is no cure for RSD, and which is also why the Experts and Researchers are having a heck of a time trying to come up with treatments for us.

Once they find something that will work great for one person, maybe even putting that person in remission......it probably won't work for the next 20 patients.

Same as a med. What may work for one patient, probably won't work for another 20.

Treatments......the same. Doctors......the same.

In another group, someone just asked me about a doctor I seen in Chicago. Now, for me, this doctor was the best!!!! I'm planning on going back to Chicago as soon as I get the money to and a vehicle that will make it.

But, when she went there, she immediately disliked him, and, according to her, he plain out told her that she was nuts!

But, ask a few people in this group what they think of Dr. Lubenow....and they'll agree with me. So, see, just cause a few people like a certain doctor, doesn't mean everyone will.

This disease is something that we have to educate ourselves on.....and then, hopefully find a doctor that is willing to work with us, and learn with us as we grow older and progress with this disease. One thing might get worse and our meds might need changed. The doctor needs to realize this also. Or, if you have surgery on something, the doctors need to realize that just because we are on high dosage meds already, doesn't mean that we don't need something else for the new pain that we are going to be experiencing.

Its a weird cycle.....but, no, you are not losing your mind......and no, it doesn't eventually go away.

Tonia

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September 23, 2004

Judy you can do that here. We all love a good joke, and a good recipe. As far as venting, that is what we are here for, to help each other. You vent all you want, we are listening.

Hugs

Jeana

September 23, 2004

Judy you can do that here. We all love a good joke, and a good recipe. As far as venting, that is what we are here for, to help each other. You vent all you want, we are listening.

Hugs

Jeana

September 23, 2004

Judy you can do that here. We all love a good joke, and a good recipe. As far as venting, that is what we are here for, to help each other. You vent all you want, we are listening.

Hugs