Let's see...I use heating pads. I have 3 kinds: one that plugs in, one that is microwaveable, and the one time use air activated kind. I use the microwave one when I am moving around because I can strap it on...great for when I need to leave the house for any reason when it is less than 70 degrees outside. The plug in one is great when I am sitting because the other is much heavier (which can aggravate the pain so it's a balancing act between is the heat helping more than the weight is hurting). And the air activated one time use ones are great to use on my neck when I go outside (under a scarf). My neck is extremely sensitive now (can't even stand my hair touching it) but is the worst when cold air hits it. So having a heating pad on it, under a scarf is the best protection I have found and allows me to leave the house.

And then I also have a space heater set up next to the couch so that I can have my ankle completely exposed with nothing touching it and the warmth. This can bother others in the room though so it is mostly done when I am alone.

Lidoderm patches for me help a little...but a little is better than nothing. I tend to use them now on the newer areas of RSD in my upper body and I find that I get more relief from them using them that way. For me...it can be especially helpful to wear them on an area where they get touched the most (under a part of the clothing that touches the skin). Then not only do I get the relief but I also am avoiding the pain from that contact.

I haven't used a skin cream for heat but I have used Voltaren Gel for inflammation. I have discussed trying something else for the pain with my doc but we are only starting me on one thing at a time to see what works so that's just on the list to try in the future.

And physical therapy is really great. RSD is a use it or lose it sort of thing so it is important to push through your pain as much as you can to keep the function. Definitely keep your physical therapist informed of what things aggravate your pain, talk about the no ice thing. When I first went to PT they put me on a TENS machine with ice at the end and it just hurt. When I found out about the no ice thing I talked to my therapist and we tried the TENS with heat...this was amazing.

Speaking of TENS units...my new doctor was able to get me one and it is the best pain control I have had since this all started. Not everyone gets relief from a TENS unit...but I count myself lucky because it is the only thing that really brings me down on the pain scale. Without it I was constantly at a 10, not able to even DO the physical therapy that I knew I needed. With it I am at about a 7 (at least to start...the more I do the worse the pain gets)...and that is a frigging godsend after so many months of being constantly at a 10.

Pain management doctors are good because they will often be the ones who perform procedures like the pain blocks, and they will be (generally...not always) better at keeping your pain meds straight and trying new ones and combinations that will help. Not all pain management docs are created equal...my last two were awful and I was jerked around on so many meds, starting and stopping abruptly, starting a bunch at once, etc and ended up with some bad side effects and (my current docs think) a mild case of seratonin syndrome because of it (hallucinations and some other scary stuff). You really need to see several doctors in combination to treat RSD and a pain management doc is usually one of them.

As for the nerve conduction study...I would say voice your concerns with any doctor who orders it and find out why. If it's because they strongly suspect you don't have RSD and need it to diagnose what they DO think it is, then do it. If they give you nonsense about it being a way to confirm RSD then I'd advise against it. I did one this year because we were trying to figure out if the pains in my upper body were something else besides RSD spread. It was very painful where I am sensitive...which means everywhere except my right leg. I'm used to pain...but if my doc was convinced that the upper body pain was RSD I don't think she would have ordered the test. Really...that's between you and your doctor to decide if it is worthwhile.

Hope PT went well today.

Avoid Capsacin cream.

Lidoderm patches are fine. But, use them sparingly. If you use them everyday they stop being effective--at least that's my experience. You can also get Lidocaine cream.

If you get a good doc with RSD experience that wants a nerve test done, fine. I just wouldn't go asking for one which someone else suggested.

Sorry, doc. appt. today, gotta run...

Jerie, you really raise a lot of questions in my mind.

Conduction Study:
'I would try a nerve conduction study on your neck and arm." -

• This has been done and showed that the nerves that come from C-5 and C6 have some blockage, but they don't mow where the blockage is. It seems to me that it is mostly C-6, because C6 goes down my arm and to the thumb and fore finger. Also LIT_LOVE advises against the test. It did not bother me, it was done about three weeks after I hurt myself. They have another one scheduled in about a month.

Sympathetic Nerve Block:
"I would try a sympathetic nerve block to see if your pain is sympathetically maintained or sympathetically independent pain."

• This went over my knowledge level. Can you explain this in simple terms?

LIT_LOVE, thanks for your comments.

"Also, please have your blood sugar tested ASAP. Diabetic Neuropathy is frequently confused with RSD."

I will see my family doctor in the morning and the arthritis dr on Tuesday. Both of them have done blood tests with in the last month. I will have a long list of questions. Someone said to have B-12 checked also, I will.

My physical therapist was kind of unhappy that I am researching the internet about this. I told her that I will be an informed patient, it's my body, I live in here. I have been on a lot of forums and sometimes people with good intentions disagree. So I will learn as much as I can and decide what to do, but I really appreciate the comments.

Here is my question, if it was proven that I have RSD, what is the treatment?

If you hadn't been proactive about researching RSD, then you'd still be using ice, one of the first things your PT should've warned you about. Were they using ice on you in PT? Did you stop allowing them to use ice on you? (just a guess...)

Being informed will not implant any suggestions in your head, unless you have an underlying psych disorder (which I highly doubt) but it will help you prevent treatment that can cause you harm.

You have a very tentative diagnosise from a doc that isn't treating you urgently. Learning all the complexities about RSD and your treatment options is a lengthy process. I'd worry about getting a definitive diagnosis first, but I'd make it an urgent priority.

No one warned me about ice till you all did. I don't remember if anyone suggested ice, that was probably was my idea, because it felt good. I did use it from the last of August till I was told on here not to use ice. Also since about the first couple of weeks the underside of my right forearm has been numb. I attributed it to setting with arm on my knee while I held something hot or cold on my left arm (I know no ice, but I didn't then). Today some very slight tingles up the back of my upper arm. I pray that RSD has not spread to my right arm.

The one thing that I have not seen in your comments is a treatment.

After reading all of your comments I have tried to summarize as shown below:

• Reflex Sympathetic Dystrophy Syndrome (RSD)

Also my left shoulder/arm is much better and I thank you all.

• Some Symptoms:
burning skin __________________________ (Yes)
skin color changes _____________________(No)
swelling ______________________________(Very Slight)
extreme sensitivity to touch or breezes ____ (Yes, Thumb & Finger)

• No positive or negative test available.

• Nerve conduction study on your neck and arm (I had this, some say that this test makes RSD worse. The test indicated that I have some blockage in the nerves that come out of C-5 and C-6, but not where the blockage is located.)

• Sympathetic nerve block to see if your pain is sympathetically maintained or sympathetically independent pain. (Is it a anesthesiologist familiar with RSD that does this test?)

• Compartmental syndrome, compression of nerves, blood vessels and muscles inside a closed space. (Any tine that i set or lay down putting pressure on my left shoulder blade my arm immediately goes numb)

• Pain Management:
The place that I go to all of the doctors and that I have seen is the Spine Institute of Louisiana in Shreveport, Louisiana. Besides maybe 30 other doctors they have four Pain Management Specialists and one Anesthesiologist. I did a search for a doctor who treats or diagnoses Reflex Sympathetic Dystrophy in Shreveport, LA and they came up. How do I find out if one of these doctors know anything about RSD ?

• TENS Unit:
I have a small tens unit from several years ago. I have used it some. I took it with me this PT group and they showed me how to re-program it to work more like the one they have.

When you call and say you want to make an appointment, tell them that you are looking for a doctor who can treat RSD/CRPS (complex regional pain syndrome). Once you are there, you have to ask questions about your condition. They will likely take a detailed history, maybe order tests or look over all your test results, and discuss what they think is wrong with you. They may need to see you several times before confirming the RSD diagnosis because I think they need to observe a certain number of symptoms, and you may or may not have those things at the time you see the doctor. You should be able to ask questions, and hopefully get a feel for how much the doctor really knows about RSD. If anything seems off to you, or you are unsure about something and want to ask here for opinions about it, then you can do that. Especially in the beginning it is very hard to know if a doctor really "knows" about RSD or not unless you can speak to someone with RSD who has been treated by that doctor. I mean...how would you know if they said something completely wrong or ridiculous when you are so new to it? So the best thing I think it to call and tell them you want to see someone who specializes in or is familiar with RSD/CRPS and then go from there.

Ice is a common component in PT, that they didn't stick you in ice packs is a good thing. But your PT should have warned you not to use it at home as well.

Skim through all the puzzles, and click on all that interest you.
http://rsdrx.com

quote from puzzle #14

"The chronicity of RSD is far more important than the stage the patient is in.

The accurate predictor in regards to the patient's treatment is not presence or lack of atrophy in the muscles of the extremity.

What is more important is the length of time the patient has suffered from the illness. In the first six months, the disease is far more amenable to successful treatment. The success rate in the first six months, if the RSD is treated properly, is over 80-90%. Between six months to a year, it drops to 60-80% and after two years, there is a risk of over 40% failure and with the passage of each year, the disease becomes more established and more difficult to treat. The other accurate indicator is the patient's age. Up to 22 years of age, the patient has excellent recovery power ( please see RSD Puzzle #11 regarding Children).

All of these indicators mean nothing if the patient undergoes treatment with ice, addicting narcotics, unnecessary operations such as sympathectomy, spinal stimulator, amputation, or surgery in the form of exploration in the area of inflammation of the RSD. Such dangerous treatments render a far lower rate of success in the long run independent of the stage of RSD."

Hooshmand quote puzzle #21

"RSD PUZZLE #21
Symptoms used to diagnose RSD

"One of the most accurate ways of diagnosing RSD in a patient who has had other manifestations of it (constant burning pain, weakness or movement disorder of the extremity, emotional disturbance, and insomnia, as well as evidence of swelling and inflammation of the extremity) is to do a sympathetic ganglion or IV Phentolamine) tests. In the first two to three years, such a sympathetic nerve block test definitively relieves the patient from her pain. Such a positive response of pain relief proves that the patient suffers from "SYMPATHETICALLY MEDIATED PAIN" (SMP).
*edit*

full info here-
http://rsdrx.com/rsdpuz4.0/puz_21.htm

Check out the "Useful Websites" Sticky at the top of the forum.

Regarding current treatment, this is a good link:
http://www.rsds.org/treatment.html

And don't miss the resources page:
http://www.rsds.org/resources.html

Finding a good RSD doc is not easy. It'll probably require lots of research. Make appointments for a 2nd opinion and when you find one you trust, switch docs.

Call the clinic you mentioned and ask if they have an RSD specialist. Take the name/s they give you and google the doc along with RSD and see if you can locate any patients reviews online.

RSD/CRPS Support Groups Link in Louisiana:
http://www.rsds.org/4/support_groups...html#Louisiana