Reflex Sympathetic Dystrophy (RSD)

[dar in pa]

GOOD MORNING EVERYONE,
HELP--SO DEPRESSED WITH ALL THIS PAIN AND DISABILITY.
RSD IN BOTH FEET, LEGS AND HIPS, ALONG WITH NEUROPATHY IN MY FEET. 52 YEARS OLD BUT FEEL LIKE 90.
ANYONE OUT THERE WITH SEVERE OSTEOARTHRITIS IN THE HIPS ALONG WITH AVASCULAR NECROSIS?? ANYTHING TO HELP WITH THIS HORRIFIC PAIN? I TAKE 3 PERCOCET (10/625) A DAY AND, IT DOES NOT EVEN TOUCH THE PAIN.
ANY INPUT ANYONE CAN GIVE ME WILL BE GREATLY APPRECIATED. ANY COMMENTS ON THE SPINAL CORD STIMULATOR OR MORPHINE PUMP WILL ALSO BE GREATLY APPRECIATED.
HAVE TO LAY DOWN NOW AS I HAVE BEEN UP ALL NIGHT CRYING IN PAIN.
CAN'T BARE TO LIVE THIS WAY ANYMORE.
THANKS TO EVERYONE WHO RESPONDS.
I KEEP THE FAITH AND ASK GOD FOR STRENGTH EVERY DAY BUT AM LOSING HOPE.
DARLENE

[Bussey]

Hello Dar,

I'm sorry to hear that you are dealing with so much pain, and so many conditions, at this time. Depression is definitely a natural response to all that you are going through. If my memory serves me correctly, you have been dealing with RSD for many years now. From what I have heard about the spinal cord stimulators, the responses and outcomes, have been mixed. However, we always have to worry about the possibility of the RSD spreading even more so, after the surgery. Also, as it pertains to the morphine pump, a friend of mine has been dealing with RSD for about 20 years. For most of that time, she has had a morphine pump. Morphine pumps are usually implanted when the RSD is in the lower extremities, which I believe is the case, as to where your RSD is. I don't remember the names of the different medications, but she has a combination of medications in her pump, and she receives significant pain relief, as a result. You already know, that everyone responds to any type of treatment very differently, and there is always that fear, of the RSD getting much worse, after the surgery has been performed.

I believe everyone that suffers from RSD, has at some point in time, suffered from situational depression. However, if that type of depression is not controlled, there's the possibility of the onset of clinical depression. I said that to say this. I hope that you are getting help with the depression that you are suffering from now. Hang in there, and don't stop praying. Never give up.

You are in my thoughts and prayers.

Bussey

[dar in pa]

HI BUSSEY,
THANKS SO MUCH FOR YOUR KIND REPLY. YES, I HAVE BEEN DEALING WITH THIS FOR MANY YEARS. ACTUALLY HAD PROBLEMS WITH MY LEFT LEG AND HIP ABOUT 20 YEARS AGO BUT NO ONE COULD TELL ME WHY I WAS IN SUCH TERRIBLE PAIN. NOW BACK UP THREE YEARS AGO, AND IT HIT WITH AVENGENANCE. HAS NOW OVERTAKEN MY BACK, BOTH HIPS, LEGS AND FEET. THE PAIN IS UNBEARABLE. AS WE ALL KNOW, I AM JUST SO TIRED. I CAN'T SLEEP BECAUSE OF THE PAIN AND AS A RESULT, JUST FEEL TERRIBLE MOST OF THE TIME. THE OSTEOARTHRITIS IN MY HIPS IS AS SEVERE OF PAIN AS THE RSD. I CANNOT SIT, STAND, WALK OR SLEEP; THEN ADD TO THAT THE PERIPHERAL NEUROPATHY IN MY FEET--THEY ARE BEET RED AND FEEL LIKE THEY ARE ON FIRE.
MY LIFE IS TO THE POINT THAT I CAN BARELY FUNCTION. I HAVE NOT TRIED ANY OF THE PAIN PATCHES AND AM GOING TO TRY THEM FIRST, WANT TO SEE HOW I CAN HANDLE THEM BEFORE I DO ANYTHING AS DRASTIC AS THE PUMP. THE PERCOCET HELPS TO TAKE THE EDGE OFF, BUT THE PAIN IS GETTING SO SEVERE THAT THE 3 TABLETS 10/650 I TAKE A DAY IS NOT HELPING VERY MUCH. DO NOT WANT TO HAVE TO JUST KEEP TAKING MORE AND MORE. TRIED TO DEAL WITH THIS WITHOUT PAIN MEDICATION BUT JUST COULD NOT BARE IT.
I KNOW DRUGS ARE NOT THE ANSWER BUT JUST CAN'T TOLERATE ALL OF THIS PAIN. I HAVE DOCTORED FOR DEPRESSION FOR MOST OF MY LIFE, SO THIS IS NOTHING NEW TO ME. MY FAITH KEEPS ME GOING, AS MY MOTHER ALWAYS TOLD ME IT IS THE WAY SHE GOT THROUGH HER WHOLE LIFE. SHE WAS MY BEST FRIEND AND I MISS HER SO MUCH. SHE DIED FROM CANCER 4 YEARS AGO.
AGAIN, THANKS FOR YOU REPLY.
GOD BLESS YOU.
Darlene

[April63]

Darlene ~

So sorry to hear about your Mother. I crushed my lower leg and ankle about 2yrs ago. It took a year before they sent me to a pain management doctor. I did have patches that I found did nothing for me and only hurt to put on/off my leg and ankle. I did get a stimulator put in and since then and have had some relief. I could take narcotics but I told the doctor it makes me extremely ill. So I do push through the pain as hard as it is. I'm on a rather large dose of neurontin for me (2400mg + /day) It depends on how much activity I'm doing on any given day. I believe it helps me push through the pain and I need it to sleep at night. I have been dealing with some terrible back pain since the surgery and the doc told me to come in for a shot, but I'm trying to just wait it out. Again, I never took any kind of pain meds before my accident (even when I have broken bones in the past or after surgeries) I just find it hard to cover up instead of treating. But, for me, the stimulator was a good choice. I don't know if I would have chosen a pain pump instead, right now I would say no. The answer for you maybe YES.

But each of us has to do what we need to ~ TO GET BACK IN OUR LIVES! And I pray for all of us suffering from this thing they call RSD, and hope that we all can return to our lives in some sort of capacity. Just know that there are people (who's faces we can't see) that care about you and others going through the pain.

I have be having a lot of bone pain lately and the pain doc only deals with the nerve pain...so I still have not figured that one out yet. Have been off work for 2yrs now and have now just realized that I need to move forward and not stay where I am...It is very hard and I struggle everyday. (as we all do)

Take care,

April

[dar in pa]

Hi April,
Thanks for your reply--sorry I am late in responding. I have been having a bad time with pain and trying to get it under control.
I did start on a low dose fentanyl patch about 10 days and, it does seem to be helping.
I just pray and pray every day for all of us. This is a terrible disease to live with. I try to keep upbeat but, as we all now that can be hard at times.
God bless to everyone out there.
Darlene