new to RSD
 

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

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

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.

Hi candice

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

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.

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

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.

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!:D

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

Thank you everyone
 

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.

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 :hug:

Hi Candicek and Welcome to Neurotalk,
I'm so sorry you are having these symptoms and having a difficult time getting a diagnosis. It was also 4 years before I got a diagnosis. I got RSD right after having surgery, a couple breast tumors , benign) Got swollen arm, lime green liquid withdrawn, infection, got frozen shoulder. Dr. got rid of me, sending me to Rehab. Dr. and Physical Therapy. It took a year and 100 treatment. I had massage therapy before p.t. and that got me furth along. I went in too remission after I got the use of my shoulder back. They told me not to be surprised if I got frozen shoulder in other side. And I did. more therapy p.t. & massage and full range back and remission again. About a year later, while water skiing, pulled nerve in my left hand. Misdiagnosed as rheumatoid arthritis and hand froze up. Didn't make sense so went to a sports injury group, orthopedic, and the hand specialist diagnosed me in 1 minute with rsd,sent me to neuclear medicine for test and confirmed as RSD. Your feet look like mine. It's been 14 years and I have full body now.
If you live in a city or near one, you can find a RSD support group by going to RSDSA.com It will have a place to put in your zip code and will give you name and phone number of a support group leader. We meet once a month at a hospital. Members have experience and generally know what Drs. in the area are knowledgeable about RSD.
Another website is rsdrx.com by Dr. Hooshmand ,retired from Florida. The website is full of information. If you go to Puzzles List, it has about 140 questions from rsd patients and his answers. He was a RSD specialist for years.
RSD is an autonomic disorder, which means it affects organs that are involuntary, like heart , lungs, body temperature, thus sweating, being so HOT or so COLD. blood pressure, both high and low. affects our immune system. RSD affects the Limbic part of our brain, that affects our short term memory, we sometimes have difficulty finding words while in a discussion. Many have jerks, electric jolts, spasms, thus need anti-seizure drugs. Depression goes along with RSD because of the Limbic part of brain. Anti-depressants are used for nerve pain. Some of us have insomnia. Anxiety is another symptom of RSD-Limbic. I take anti-anxiety meds, which help greatly keep the pain level down. Sleep is so important and keeps the pain level down. Swimming has kept me mobile. stretching, swimming=86 degree water temp.
If you are diagnosed with RSD, it's a traumatic blow to our life and lifestyle. Counseling has helped me a lot. My psychiatrist is also a board certified neurologist and pharmacologist. Just being on the right combination of meds has turned my life around, as well as talking to someone who understands.
This is a wonderful group of friends that are so compassionate and kind and experienced. We all are different in many ways as to RSD and how we react to meds and even what meds we are on.
Please know we all have awful down days and come here and it's OK to share our pain with our friends here. Thank you for the pictures of your feet. They look painful. I live in Arizona, and ones that live in snow country, really need to take care to keep warm.
Desensitization is very important to keep our limbs mobile. I had that done in therapy and at home. Took pastic bowls and put cotton balls, rice, popcorn, coffee grounds, sand in each bowl and run my hands and feet thru the different textures. Also, when I was diagnosed, my Dr. ordered a Tens Unit that I found helpful in distracting the pain in my hands, and desensitizing my hands. It has a couple batteries and it gives off signals, which you can regulate as to strength and frequency.
Actually a lot of us use distraction in our dailey life to function. I love music, scented candles, epson salt bathes, light massage. essential oils over lighted candles that give off scents. I love reading, prayer, meditation.
Ask your Dr. about driving and your meds. I can't drive within 4 hours of taking my meds. So I have a small window of time, I can run errands. I also have a handi-cap sticker for hanging from rear view mirror. That has been a wonderful help, not walking in big parking lots in 110 degree heat here in the summer.
Please know we are here for you, your friend, loretta soft hugs:grouphug:

hi candicek and welcome to the group

i am so sorry that you like the rest of are having to deal with incompetent doctors that just send you back and forth when they have no idea what the cause is. Instead of tryin to figure out what in the world is going on..

i would try to see if you were able to see a Pain managment doc in your area.. that is knowledge able about rsd or related issue. like you i am a nightmare case. and it took over a year to get diagnosed..11 yrs later here i sit.. finally have a great team of docs.. it does take time..

please fell free to post and reply in the thread we are here to help each other..

hang in there


ps have you tried epson salts for at least some of the muscle relaxation i have used this for the rsd for years. and even before rsd for sports injuries
carrie

Candice
your dr is missinformed,,,,,rsd can mirro over to the other limb,,,I too was told by several dr;s that it inpossible,,do your own research and google rsd crps,,moirroing over to the unaffected part of the body,I too had it start in my r-heel then it mirroed[phantom pain in the l-heel,,exact spot with no injury,,then the l-leg turned colors as the r-leg did,,,,crps[c] means complex,,,,find a good dr who is well informed ,,,,,,,,,,,pray,,pray,,the pray somemore,,,,,,,,,bobber,,,,,,ps,,reading your post,,sweating,pain,,tingling,,mirroed,,,these are all signature signs for rsd,,,and most of us hear KNEW we had it way b4 the dr's finally dignosed it,,,,,,,,,,,,