[candicek]

I am new to RSD i have an appointment tomorrow and don't know what to expect. I have seen other doctors with the same complaints and havent been taken serious. I have all the symptoms-feet get cold and extremely painful, then red and extremly swollen, i have numbness and tingling all along my right side and arm, my skin texture have changed to a shiny moist texture on hands and face, i have random stinging when i get warm, along with prickly sensations all over, i sweat uncontrolably and it has interfered with work. i have good and bad days, but the last few have been almost unbareable and quickly increasing to more and more problems. i have some pics of my feet and wonder if anyone elses look the same. I would also appreciate any advice anyone has to offer...thank you

[fmichael]

Hi Candice -

Sorry that no one got back to to earlier, especially with the care you took to include pictures, dated today (9/22). I just now noticed your post, for reasons I can't fathom.

But it's absolutely inexcusable that your complaints haven't been taken seriously by doctors before now. Based upon what you described as well as the photos you attached, it certainly sounds as though it could well be RSD/CRPS. That said, I'm not a heath care professional of any sort, just been hanging around with this for a while now. Speaking of which, you didn't say how long it's been since you first developed sreious pain, which can make a difference in terms of treatment options.

In terms of what to expect, here's a link to an article for patients on the sites of the Reflex Sympathetic Dystrophy Syndrome of America (RSDSA) called "Complex Regional Pain Syndrome Diagnostic Tests," by Katie L. Aker http://www.rsds.org/4/resources/CRPS_Diagnosis.htm As you can see, it's basically a link to either the full text of the article (in a pdf farmat) or any particular section you might be interested in. I should just note that it is unlikely that you would have a response to sympathetic nerve blocks, the last testing modality listed, if you've had this for more than a year.

If you are found to have RSD, I would urge you to study the wide range of treatment options out there, before accepting on face value any assertion that you "must do" this or that. In that regard, I would be particularly cautious if someone tried to sell you on anything that had to be implanted in you (a pump or a spinal cord stimulator) before you run through the list of medical (as in medicine) options, which can range all the way from combinations of analgesics and anticonvulsants, to injections of local anesthetics in or near a bundle of nerves, all done in a sterile environment under flouroscopy, to iv infusions of all sorts, most of which are just given in the doctor's office, or any combination of the above! (And don't forget physical therapy as part of the treatment regeme, either.)

Good luck on Wednesday, and keep us posted, fire away with any and all questions, etc. We're a good group, and usually more responsive. Sorry again about that.

Mike

[hope4thebest]

Hi Candicek
Glad you found the boards, especially after having inadequate response and no diagnosis as yet from a doctor !!

I am sorry that you have had to bear the burden of your symptoms and pain without any guidance, direction or plan, and to endure them as you try and make it through the work-day...

What kind of docs have you seen and was this from an injury, surgery or?
How long have you been struggling with the symptoms, and have you had any treatment at all?

Mike has provided excellent resources to help you and educate you.
The best thing you can do for yourself is to get as much reputable information as possible, so that when you do have appointments, you will be able to take an active and informed role in your treatment, and can make wise choices.

For now, refrain from icing the areas where you have symptoms..if the diagnosis is in fact RSD, ice is not a good modality.

Let us know how the appointment goes and know that you have come to a supportive and understanding place. Welcome to the boards!
hope4thebest.

[allentgamer]

Hi candice

Welcome to the forums! Sorry I didnt see your post until now either

Was wondering how your doctor appointment went, and also do you know how you got the RSD?

I get some colors, but not in the leg. That is where I first got the RSD first, but in the right arm where it has spread. It gets red, then dark red, then a kinda purple, then it gets almost black color. It gets real swollen too. Not real pretty LOL.

[daniella]

Welcome to the boards. Does this doctor deal with RSD a lot? What type is it a pain doctor? I have seen many and each has been different. I know it can be frustrated and create loss of hope when one just gets brushed off but don't give up. I am not sure if you are on any meds,have tried treatment,and what diagnostic tests you have had but those are all things that should be discussed on top of what symptoms you have. Usually you fill out a pain level sheet and diagram. If you have any results from docs from tests bring those as well. Very key to have a doctor who deals with RSD. Very key can't stress that enough

[Imahotep]

The first couple years are the best chance to arrest this disease. It never really goes away but your best chance to get a remission are in the first couple of years. If you can't shake it don't give up. There is life after RSD it's just different.

Maybe some day there will be a cure. It just doesn't seem like it should be so hard to turn off and keep it off. In the mean time try to discover your triggers and avoid them. If you're like me they'll change all the time so it keeps you pretty entertained.

Best of luck.

[cindi1965]

Welcome, you will find that this is a wonderful place to be. Everyone is always so helpful, nice and loving. It took me a while to get a diagnosis and I saw a bunch of nuts before I found my pain management doctor who really understands me. We are still working on a good drug "cocktail" for me, but i have been getting relief at times. When my RSD starts to flare, forget it, there is no relief. I will spend a lot of time in a bath of epsom salts and pray it goes away.

Never feel like you can't ask questions here or ask for advice. This is where you can get nice warm fuzzies!

[Mslday]

Dear Candicek,

I'm sorry to hear you are going through this and I hope for your sake you were able to see an appropriate physician. If you did not get the help you are seeking please check with the RSDSA.org for a physician who deals with RSD in your area. Welcome to our board.

MsL

[candicek]

I just want to say thank you to everyone for the advice and support! I had my appointment today and did not get any answers. The neurologist i seen today (was told I had to see due to my symptoms) didnt believe it to be RSD because of the fact the I have symptoms to both sides, he said it would be uncommon...So he ordered lots of blood tests and had me schedule an EMG and referred me to a previous neurologist who was familiar with my history. He also stated before he left the room, that i was a difficult case and will pass his notes and thoughts to the other neurologist. My next appt is Oct. 8th......hoping that one will bring me answers and not brushed off again.

I have had no injuries, but i have had a handful of surgies. Brain surgery 2007(resulted with right side numbness head to toe) spine fusine 2008 (resulted with middle toes on left foot numb) are the most recent, prior to 2005 i had 2 other back surgies an some other minor ones. My symptoms started in 2007 prior to brain surgery. My feet and hands would swell, but not painful and would last 1-3 days and occur once a month to every other. The swelling continued while numbness to my right side was impoving very slowly, but has recently gotten worse.

I started a new job in may and have already quit due to extreme pain in my feet ( stood 7-9 hrs) and uncontrolable sweating, which brought on anxiety and discomfort. I would say that was when my symptoms of serious pain started, and has been increasing since. I have only been taking OTC meds, which do not help.

I hope I answered most of the questions and greatly appreciate everyones thoughts.

[hope4thebest]

Hi Candice
I am sorry you have had such a hard time for the last 4 years!! Surgeries compounded with pain and no real treatment for the pain! I really find that unacceptable ,and now you will be seeing yet another neurologist and not until oct. 8..
Its it possible for you to call your neurologist's office and ask him/her to refer you to a pain management doctor, particularly one who is an anasthesiologist? Tell them the pain is intolerable and you need immediate intervention.

You need more pain control that just over the counter medication! It astounds me that they haven't helped you with this...
The thought of you waiting for over two more weeks without any pain control is incomprehensible.
Keep us posted and I hope you get some stronger relief! We are here for you!
Hope4thebest