RSD spreading-please read
 

Thanks for reading. Diagnosed with RSD in arm & it's over a year. I am on all kinds of meds, done blocks, trialed scs. Debating getting scs- pm dr. wants it to prevent spreading. The back of my feet have been aching. Sometimes if im sitting and get up i cant walk right for a few minutes. My husband says i need new sneakers (i have 3 pair i have been trying-thanks to kids with same size shoe, but they still ache). Now i have been waking with burning on the top of one foot. I think im dreaming so i get up. It still burns. Happens a few more times at night. I still dont believe/trust myself. I cant tell my husband because i dont know if he can take it. Watching tv my foot began to burn-im awake for sure. My foot is not cold or purple(a little red). It can't be. I cry... Cry again. I go to pm dr. today. Has anyone had spreading? Did yours start like this?
momof4

Momof4
 

I am very sorry for your suspected progression but I do feel your timing is right in that you will see you pm today.. your concerns are valid and ask away to your pm. I honestly have seen much progression with my RSD over the last 2 + years as you may be experiencing now. As yourself, when I detect another affected area, I always get scared and keep it to myself until I can share it with my husband and family.. I have had exactly what you describe in that my feet bother me too and walking intially after sitting can be difficult.. Try not to take this burden on personally.. share with your husband as it affects you both and your need the support.. he will handle things as they happen due to his love for you. This is a progressive illness...

At this time, Thanksgiving.. although we are battling such a monster, know that we do have much to be thankful for and relish in the fact that we are lucky for our support and love in our lives, which we need and depend on... and small steps.. as our illness is ours but what is in our hearts and minds remains the same..

Happy Thanksgiving!!!

Keep smilin...:grouphug:

Very sorry to hear about your pain RNcrps2, I'm sure it'll calm down in time. I can relate to not mentioning it to your husband. My wife waited 2 years to tell me she was diagnosed with RSD for the same reason. We will be celebrating our 30th year together shortly.

If shoes bother your feet, my wife Suzy wears those tennis shoes that have no heal or back to them. She just slips them on and off quickly because her feet hurt also. I pray you have a pain free Thanksgiving! :)

first let me say i'm very sorry to hear that it is starting to spread.
RSD started in my right ankle over five years ago, and after a year it spread up my calf into my knee and over to my left leg.
now going on six years it is in my back.
but i'm glad to hear you are seeing your PM doctor. make sure to ask lots and lots of questions. i to hide it from my family, untill i am 100% sure it is there to stay,sometimes i keep it to my self for to long though. like the person above said.
share with your husband, you did not choose to have this devasting diease. don't take the burden on all your self, or that will just make you feel worse.
i hope all goes well with the PM doctor.
keep us all posted.
here's to a low pain day!

Keep Smilin, thank you soo much for responding and giving me such kind and inspiring words. I'll be sure to ask away at my pm visit and i'll share with my husband. Your right, although i don't want to be a burden my family and friends, i do need support at this time. Thanks and have a Great Thanksgiving! momof4

Hi momof4
 

Total Bummer to be facing these dramatic issues during the holidays....!
I peek in at the RSD section from time to time although i've been told my issue is PN (Peripheral Neuropathy) in both legs....Your post really caught my eye due to the SCS you are contemplating....I have decidied to go thru with it and am waiting for my trial date.....I have many inhibitions about it and have done (probably too much) surfing the web trying to get all the input from the patients who've done it.....for alot of folks it has been a Godsend....then it seems they disappear from the forums and go on with their lives cause they have no need to seek the forums....
There ARE several still here on this wonderful forum - just type in the 'search' Spinal Cord Stimulator and you will get their input....
PLEASE keep in touch on how your experience unfolds!
Also wanted to ask if you know what triggered your RSD in your arm? Did you have an injury? For the life of me I have NO idea what caused BOTH of my legs to BURN persistently for the past 5 years. It's been a complete nitemare!
Just know - you have support and prayers coming your way!
My main concern is making sure i do everything correctly during the SCS trial....it is such a huge decision.
Stay in touch !
Best wishes
Rae

Dear Mom of 4,

I hurt myself at work over 3 years ago. My RSD started in my shoulder but spread first to my neck and head, and then to other parts of my body last winter - I had a terrible time with my feet - they burned like crazy and it hurt to walk on them.

I typically walk at least 3 miles, and sometimes as much as 6 miles, each day. We have a group of dog walkers in my neighborhood that make it a point to get together each morning - exercising with friends is much better than exercising alone. Keep moving, no matter how much it hurts. All last winter when I walked my feet would hurt at first and then just go numb. Sometimes the swelling was so bad it looked like I had a sprained ankle.

Now I only wear Crocs (my former PT may have told me to do that, can't remember..?). Croc aren't as tight as sneakers, plus they are really light. I think they have made a big difference in how my feet feel. I like the monmouth crocs and the woolly monmouth crocs - both of them are fur lined which makes them warm and really comfortable. There are a few newer lines out this year that are pretty cute - check out Amazon, they are sometimes on sale and have free shipping. I've seen them at Marshalls, too.

I've also had four lidocaine infusions. They have definitely helped in areas where I had spread- my right leg used to bother me ALL the time. And now it is much, much better (even though it is still swollen and ugly, IMHO). My feet are better too this year so far, I really hope they stay this way through the winter.

All the best to you, and Happy Thanksgiving. XOXOX Sandy

Momof4...

It's keep smilin back with you.. I want to say that you are very welcome for my input... always my pleasure and know that sometimes stuff and experiences coming from others sheds a whole different light..esp. when it is about dreadful RSD.. most of all you have us as your friends!I want to share that I do have the SCS.. ask away about ?'s.. although my RSD did not prove to like it and has spread since I had it implanted in 9/08. Honestly, I don't use it...I also wear "clogs" and things like that so I can slip my sore feet in and out esp. while driving.. that is a sight. AND yes, I agree.. we need to move thru the pain.. it's the most very difficult part of our condition but it is a must...Momof4.. I want to say that if your pm has said that your RSD has spread.. plz. digest it in small doses and know that we care about your here and you are not alone!!

Happy Thanksgiving everyone!!:grouphug:

Hi RN Mom of 4,
I'm so sorry you are going thru this very painful disorder. I got it right after surgery. Breast biopsy- withdrew green fluid a few times, frozen shoulder (really rsd) It litterly took 100 pt and 100 massage. I did the massage on my own and glad I did. remission over a year. then other shoulder frozen, more treatment, another remission frozen hand while water skiing. misdiagnosed as RA Didn't seem right, so went to well know sports injury ortho hand doc. He knew in 1 min. Ordered nuclear med test on hand, confirmed, ordered tens unit- it helped non invasive. and pt with desensitization. Igot half of use of hand back, which I'm so grateful for and I don't have sensitivity. I can cut my food, button clothers zip clother peel a potatoe etc Then it moved to other hand, but got full use of 2nd hand because got pt started right away. 15 years now-full body and internally.
I've read a lot about RSD and would encourage you to read a lot about the scs. I've heard of some good accounts, but have heard of horror stories too. Please reasearch as much as you can. Is your Doc, RSD experienced?
One of the best exercises is water therapy-needs to be 86 degrees. swimming squeezing toes, hands. Has keep me mobile. One time my toes were curling up off the floor. My Dr. had me in the pool every day squeezing my toes and in about 4 months, they were touching the floor again. Even in a warm water tub bath can help. I'm so grateful I have no trouble walking and had very good pt's
Diet is extremely important. anti-oxidant, important.inflammation is a problem for us. high and low blood pressure. You are welcome to PM me any time. RSDSA is the national org. for RSD and lots of good information-you can put your zip code in and it will give you closest support group. We get a lot of great guest speakers. Last month we had a nutritionist on superfoods, I took notes if you would like them.
Also rsdrx.com and under puzzles list is 146 questions and a Drs. answers. He is retired now-Dr. Hooshmand from Florida, but another RSD Dr. has taken many of his patients.
Hope you depend on your family and friends. Journaling is a wonderful way to get your 'feelings' out. Light massage therapy helped me a lot. Your friend, loretta with soft hugs:grouphug:

I saw a few replies about the SCS, I know everyone is different & in the end the decision is yours. I wanted to share my story with the SCS...I've had it for a few months and want it out.The trial went great..the perm scs is awful for me,I've had it reprogrammed many times with no relief and my rsd has spread to other areas as result of the SCS. Anytime a person with RSD has surgery we risk a spread.
I do not want to scare anyone but please think this through ask as many questions as you can think of. Contact the company who will be doing the trial, ask your doctor for other patient input, see if there are other forums or social sites that can give you the help you need.
I wish I researched this more before I went ahead it with the perm scs.

All the best to everyone