Hi guys, sorry to come with so many Qs but I am learning. My concern is that the same feelings of pain/ache/burning are now in BOTH arms and both legs. The L arm was just diagnosed. I havent' had the severity of symptoms in the R arm and legs yet, but it is starting. I am trying my best to take it all in stride. I am already relegated to a wheelchair for the MG/MS, so that is no biggie in the scheme of things. I mean I am alive. And with the new wheels I hope to be getting soon I will have a lot of freedom returned to me.
But it is scary to think about the what is to come of the picture. How much disability do you all have from the RSD?? Can you still write for instance?? I have spent these weeks training myself to write with the R hand only to have it turn on me too. Where is this gonna end up?? Any clue?? I know there is no crystal ball out there, but then again as patients you all know what this is going to do as you have lived it.
Thanks again for any assistance!!
God Bless
Deb

Hi Deb,
I am full body RSD.. I do almost everything.. I am just be extra carefull, my arms are quite sore alot so I reach carefully.. if I overextend I pay for it with a flare up.

It takes a bit to get past the spread/flare stage but then it's not the end of the world, you learn your limits and be careful, pace yourself and try not to over do anything. Try to do the things you did before but just in smaller bits.. if you can't reach out, do it close to your body but don't stop doing it.. position things diffrently.

Use your limbs carefully as to not cause a flare up but don't baby them, try not to favor or protect your sore limbs too much and VERY IMPORTANT: bear weight on your limbs, for vascular stability. and touch them if they are sensitive.. it hurts but it makes them less oversensitive. I use 2 canes out doors, and my legs I elevate alot but I walk around my home without the canes, however I walk a few blocks outside with canes sometimes daily because I am stuborn

I plan on taking up art soon I have always wanted the time to do this.. and now I am no longer battling for my life in various ways.. well it seems I have some time now and I think I want to try even with my arms effected too.. and well I will let you know how it goes.

hugs n' luck
Sandra

Hi Deb, Please feel free to write or ask questions as much as you like. There is a wealth of information on rsdrx.com Dr. Hooshmand from Florida is now retired, but has his website up. Under Puzzles List is 146 questions and his answers. I have full body RSD-14 years. Physical therapy and massage therapy and my own exercise , swimming, stretching have kept me mobile. I wasn't diagnosed for 4 years and was misdiagnosed when my left hand was injured, so delayed therapy caused only partial recovery. Partially paralyzed. I continue to especially move my hands and feet. At one time my toes started curling up off the ground and my Dr. had me get in the pool and everyday stretch them the opposite way, In 4 months they were touching the floor again. Even stretching in a warm bath tub helps.
We really have different depths of how react and how immobile we get, but desensitization is so important, massage therapy helped me immensely and physical therapy. Even though I wasn't diagnosed for 4 years, my physical therapy started within a week of my surgery that caused frozen shoulder (RSD) And I added massage therapy to it. 100 treatments each to get full range back. It was torture, strapped down with meds in me. I'm sorry you have ms also. Many seem to have multiple issues. I have fibromyalgia and trigeminal nerve disorder. Our immune systems are definetly affected so a healthy diet is so important. I also have rsd internally.
Besides healthy diet, sleep is imperative. My Dr. a neurologist, pharmacologist and psychiatrist just finished a 200 person study on a drug and fibromyalgia, it had a side effectiveness of restorative sleep. Before the drug, I was on ambien cr and went weeks not getting to sleep till 5-6 a.m.
New drug-I sleep 10 hours and because of the restorative value, I was able to cut my vicodin in half and lorazepam in half, from 6 pills dailey to 3.
Distraction is a real help. music you love, meditation, prayer, visualization, scented candles, natural essence, journaling, let yourself cry, sharing your feelings in a support group if possible or a close friend. RSDSA is the national organization, they have a place for you to put your zip code, and you'll get a name and phone number of closest support group. We meet once a month, and saturday we had a RN speak on superfoods and high anti-ozidant foods. Staying active, even in short intervals, is important. Positive thinking is important, Replace negative thoughts with positive ones. I'm going to buy the book, Always Looking Up, by Michael J Fox and his struggles with his handicap-Cerebral Palsy. Another great book is 'You can't Afford the Luxury of a Negative Thought' by Peter McWilliams
Adjusting to RSD is like the Grieving Process, Our life is changed and we need to allow ourselves to go thru the losses we experience, pain, and look
for what we can do. I found it very helpful to be in counseling. The past 5 plus years, I've had a wonderful Psychiatrist. In the 80's I found a psychologist I spent 2 plus years with, after the death of my parents and before RSD. This is something I don't believe is healthy to try and go it alone. I have found it so helpful and comforting to be connected with others with RSD.
Take care, your friend, loretta soft hugs

Hi Deb,

Please don't be sorry for coming here and asking any questions! It's so important that you post and get the help you need and deserve!

I'm so sorry to hear that you suffer from both RSD and MS and hope you find some treatment that will help you soon! My nanan had Progressive MS so I know how much of an horrible condition it is ... I can't imagine having both RSD and MS - you must be very strong!

I have RSD in my left leg and both arms. I developed it when I was 12 years old after an ankle sprain and am now 14. I spent 13 months in a wheelchair after a nerve block caused me to lose all coordination in my legs. I had to go through intense Physical Therapy to learn how to walk again. My right arm has also locked into a fist several times and stayed that way for months. I couldn't write with my arms which was a real battle when trying to cope with School work etc.

I still have to use a wheelchair now when going anywhere long distance and must limit how much I do. I am unable to go to mainstream School due to my RSD so attend a specialist school centre for kids with illnesses etc. It's so much easier to manage there as it is all in one place and the teachers are really understanding about my RSD etc. I go to College 3 half days a week too to do a course in Society, Health and Development. It's REALLY hard sometimes trying to get up and get ready as I have fatigue (Fibromyalgia). I tend to find that on a weekend, all I ever do is collapse and sleep ... it's sort of like my body shuts down and can't take anymore.

Are you having any PT for your MS and/or RSD? It's really important that you try and keep moving as much as possible. I've lost all movement in my foot due to a movement disorder called Dystonia so am having PT to try and help with that also, however my PTs are wanting to try other options now as a last resort. Seeing as it looks like your RSD is spreading, try and do some gentle exercises. Start and do small exercises and then build them up whenever you feel up to it and can. Hopefully that will help you a little.

I really admire your positive attitude and am sure that will help you a lot ! I know how hard it is trying to stay positive with RSD. I get Depressed a lot however, I try and stay positive the best I can as I know I can't change this unfortunately so I may as well try and live life the best I can, despite all of the limitations I have.

I hope you get to feeling better soon. Are you on any meds to help with your pain? It might be worth asking your Doctor if there's any more meds that might help you now seeing as you aren't feeling too good if your current meds don't seem to be helping too much.

Take care and if you ever want to talk, i'm here for you!

Alison

hey, Deb.... i have Epilepsy & RSD. broke my left wrist in April 08 & came out of cast w/RSD..... has spread up arm 2 shoulder.... i'm the one having trouble w/eyes & face. even has affected left foot. walk w/cane. isn't this wild?? i can do everything - slowly. no cure - just control. i have found that stress must b kept down. these friends at NT r the BEST! u sound really brave. hang in there & keep reading! luv ya, friend!