Hi!

I have RSD in my left upper extremity, which developed after a carpal tunnel surgery. Not properly treated for over 2 years, so by then the blocks didn't work. A short time later, I had a left achilles tendon rupture and had to have surgery, and developed RSD in my left foot and leg. (less than a year ago).

I don't understand anatomy very well, but I'm wondering if when you have RSD, is the entire sympathetic nervous system comprised?

Inbetween these two surgeries, I developed Major Depression and Anxiety Disorder, which started to get better with medication and psycho-therapy; but the dx. of RSD again made it worsen.

I was also just dx'd with Fibromyalgia. Is this too, a deficiency in the Sympathetic Nervous System, or possibly the Central Nervous System?

Since before the CTS, I had Cervical Radiculopathy as well, so I know my CNS is affected. I did have a cervical neck discectomy with fusion, which did help, but I still have the Radiculopathy.

I'm tired of going to doctors, and wish I had one place to go that could help me with everything going on.

I take Lyrica, Cymbalta, Klonopin, Celebrex, Prilosec RX, Flexeril, and Norco 10.

I've recently lost my career over this.

Thanks for listening to me.

Ooops!. Spelled the title wrong in my previous post. Oh Well. At least this gives me credit for one new post. Gotta find humor anywhere you can.

I merged both threads together for you.

hi over the hill
and welcome to the group since i havent said so !! sorry i havent been on much lately been having a hard time of late. but the answer to your question is yes RSD does effect your sympathetic autonomic and central nervous systems. and will wreak havoc. hope you stick around we are a great bunch and love to laugh so keep the humor goin.!!!

welcome again

carrie

Welcome to the group

I had Fibromyalgia before RSD, even though I didn't know it until I read my medical records while waiting to see an Independent Medical Examiner for WC ins. comp. The IME told me that I had RSD.

My sympathetic nervous system creates havoc in my life.

You will find support here.

Hi overthehill and Welcome to Neurotalk,
I'm so sorry you have RSD and had delayed treatment. I understand your frustration and the confusion you have been thru. The fact is: not all Drs. or specialists even know about RSD or if they do, have different opinions.
I, too, got RSD following surgery, breast tumor (2) biopsy. Benign, but immediately following the surgery had swelling and shocks thru my upper body. My surgeon went on vacation the day following my surgery, so saw his partner. He took a syringe and drew lots of fluid out. It was lime green. I know now, that means infection. He said nothing and gave me ZERO antibiotics. I came back a couple more times for fluid withdrawal. My Dr. returned and by then I couldn't move my arm, he said frozen shoulder-you'll need two or three physical therapy treatments. Sent me off to a Rehab Dr. that oversaw my 100 treatments. After 50, saw an orthopedic surgeon who wanted to break my shoulder. Said no thank you thank goodness. Along with the p.t. treatments I saw massage therapists on my own dime. 100 treatments just before going to p.t. Had pain medication because it was sooooo painful. I went into remission. had nearly all my range of motion. I went back to tennis, water skiing, etc. for at least a year. But developed depression and panic attacks. Didn't understand what was happening. At the end of my p.t. the therapist said don't be surprised if your frozen shoulder moves over to the other side. I thought, that doesn't make sense, my surgery was on my left side. We moved from Oregon to Arizona.
And guess what, I got frozen shoulder in my right side. Went to physical therapy here, and saw the Diamondbacks Orthopedic Surgeon that gave me a couple of cortisone injections. Had the massage therapy too, again paying for it myself, as I felt I would get the use of my arm faster. Went into remission again for at least a year. Traveled, tennis, water skiing, While water skiing, felt my left hand pull a nerve. Swelled up and very painful, discolored, and touch sensitive. Saw a Scottsdale specialist and he took x-rays, blood tests and went back and he said you have rheumatoid arthritis. I was in so much pain. He put me on RA meds-I told him it didn't make sense as my tests were negative for RA. I decided to fly back to Oregon to a sports injury group, saw the Hand Dr. and in less than a minute, he said RSD. Sent me to hospital for neuclear med test, confirmed it. Ordered a Tens Unit and Physical Therapy. Came back to Arizona, saw neurologist and orthopedic hand specialist, both confirmed RSD and went into physical therapy and desensitization. Got partial use of hand, is partially paralyzed. That was 11 years ago. Maybe a year later it was in my right hand. more therapy, then both feet, legs, up in the neck. Saw a new neurologist and he said generalized or full body. Encouraged me to see a psychiatrist. Didn't like his two recommendations, and found one in the yellow pages. From New York, Cornell psychiatrist, neurologist, and pharmacologist diplomat. Small practice as he taught on the west coast weekly. He has saved my life, by listening, compassion, getting on the right meds at the right amounts. I've been seeing him for 5 years. He doesn't take insurance, I pay $250 an hour and see him monthly. All my toes started curling up off the floor and he had me dailey get in our pool and exercise and swim. In about 4 months or so my toes were touching the ground again. I'm still mobile.
RSD affects the Limbic part of our brain. That's why depression is big. We are talking and loose our thought or can't grasp the work we want. Short term memory is affected.
Yes, the sympathetic nervous system affects all parts of our body. Anti-anxiety meds help calm the sym. nerv. sys. and lessens the pain. I take lorazepam, others take ativan.
Most of us have sleep issues. Electric shocks, jolts, spasms are part of the symptoms. Neurotin or Lyrica is the drug most are on. I have taken both. 3200 mg of neurotin to quiet my system down. Switched to Lyrica, 400 mg. Both cause weight gain and I asked to go off. He gradually took me off and I've only had two minor jerks since January this year. I'm on 120 mg. Cymbalta,
The sympathetic nervous system affects circulation, blood pressure, body temperature-why we sweat or freeze to the bone. I'm on two blood pressure meds. The para sympathetic nervous system can cause a sudden drop in blood pressure. I woke up one morning and got up and felt the drop-fell into the wall, the door, got to the restroom and passed out. Was out at least an hour and half. My husband was upstairs. I couldn't get up, so crawled on my stomach and banged on the door. He opend and I said call 911-I was a mess lost all control. The ambulance came and I was in and out- one of the paramedics said he couldn't get a pulse-said I think she is dead. My blood pressure was60/40. Was in semi ICU for 4 days. I had some good RSD Drs. lots of tests. I asked for this hospital. It was the same hospital the RSDSA had their annual meeting at this spring. I attended along with 135 patients. The next day was the medical professionals. They will have a DVD of the two days under their website.
I have had major depression, but therapy and meds have really helped me. I am so grateful for so much. I have different methods of coping I'll share with you. I miss my career too. We have lost a lot financially because of the expense, even though I have good group insurance. Only because we own our own business. But our business has suffered because of my health and now lately the economy.
But something really great has happened. My Dr. just finished a trial study of a drug-to be used at a low dose for fibromyalgia, which I also have. I was no sleeping, the Ambien wasn't working anymore. I went for a long time not getting to sleep until 5-6 a.m.
He put me on low dose seroquel-the drug he had 200 patients on in trial. I started getting 9 hours restorative sleep. It made the world of difference. He cut my anti-anxiety med in half and left the pain med, vicodin, up to me. I went from 6 vicodin to 2 a day. I went from 6mg of lorazepam-anxiety med to 2-3mg. I'm driving again, going to grocery store and errands. I've even gone out to get new coffee jobs. We own commercial office coffee business. Only once, then got the flu. Have a low immune system, so on a good diet and anti-oxidants. vitamins etc. I'm so sorry you lost your career. Please don't give up.
I know the S N S is involved, I'm not sure about the CNS. My guess would be yes. I'll have to ask my Dr. I'm disappointed my my original Dr. and loss of time,I didn't sue any of my Drs. I even fell at an Exxon Station putting air in my tire. The hose recoiled out of the blue and thru me back on my head,neck. Got a ruptured disk, they said they would pay, but I was such a mess, I never turned in any bills. They had given me a claim #. The air hose people were out EARLY the next day and replaced the entire machine. Of course I now have RSD in my neck. This happened in the 4 years I didn't know I had RSD. Today, I would sue EXXON, I have terrible neck pain and headaches.
RSD does spread, but it also goes into remission. I've had remission twice!!!!!!!I'm now in the best place, other than a remission. I'm on 2 vicodin, 2-3mg lorazepam-anxiety
2 blood pressure meds. Seroquel 300 mg. for sleep. I've lost 30 lbs that I gained on Neurotin-Lyrica. Don't have the jerks, violent electric shocks or spasms anymore. I swim, do stretching, exercises. Working on my last 30 lbs.
The anxiety med I really believe in, so does my Dr. it calms the SNS down-so less burning and pain. I'll share some coping skills tomorrow with you. It's almost 10pm and I'm seeing a Dr. for flu tomorrow. There is a good website I learned a lot on. Dr. Hooshmand is now retired but still has his website up. rsdrx.com Under, Puzzles, it's 140 questions by patients and his answers. It's good, although, I'm not sure I agree with his theory on pain meds. We don't get high and I believe by far most of us do not abuse any meds. We do whatever is necessary to function and are responsible. I told my Dr. I appreciate his trust in me. He was so happy for me when I told him I had cut my pain meds down to 2 for most days. I was on 6 a day.
He just built two clinics with HBOT in each of them. I'm going to try that. You can goggle RSD and Hyperbaric Oxygen Chamber.
Take care-you'll find a lot of comfort and support on this forum. So much compassion and we are here to help each other. Your friend, loretta

Thanks to everyone for replying. I look forward to spending more time here. Just got home from psycho-therapy and am bushed. Really need a nap. Will check in tomorrow. :-)

Hi overthehill,
Glad you've come to the boards..
It is hard going to so many doctors and sometimes even getting contradictory information..I know it seems as though our lives are comprised of one appointment after another...
this is a great place to come and to be able to ask questions and get sincere information that is based on real experience, not text book theory!
The sympathetic nervous system is what controls our 'fight or flight' responses and where the pain messages travel. The parasympathetic nervous system is where the calming signals originate. The ideal is to have the two in balance in normal circumstances. I have RSD in my left foot and leg which is spreading to my right limb...I also have burning in my face and in my mouth..my sympathetic nervous system is chattering waaay too much..

I hope the psycho therapy is helping!
Hope4thebest

[QUOTE=overthehill;547562]Hi!

I don't understand anatomy very well, but I'm wondering if when you have RSD, is the entire sympathetic nervous system comprised?

Inbetween these two surgeries, I developed Major Depression and Anxiety Disorder, which started to get better with medication and psycho-therapy; but the dx. of RSD again made it worsen.

I was also just dx'd with Fibromyalgia. Is this too, a deficiency in the Sympathetic Nervous System, or possibly the Central Nervous System?

Good morning overthehill.

RSD is a very confusing disease, even to the Doctors who are experienced with it. It is not a deficiency but a dysfunction not just of the sympathetic system but, eventually, of the entire nervous system.

Understanding what goes on with the nervous system, including the brain, has helped me a lot in dealing with RSD.
It's been a while since I have studied the effects RSD has on the nervous system but here is some of what I remember, in general terms.

The body does not feel pain, it only sends signals to the brain and the brain interprets the signals according to which nerves send the signals. Different nerves terminate in different ares of the brain; it's like a switchboard receiving electrical signals over wires. The brain tells us that we are in pain.

In RSD, nerve fibers in layers 1 and 2 will, after a while, grow new nerve fibers called sprouts into layers 5 and 6 of the spinal cord which then connect with nerves there and allow the RSD to spread to other parts of the body affecting circulation and motor function there. These signals are now shorted to nerves coming from parts of the body that have nothing wrong with them but, the brain does not know that there is nothing wrong in those parts. The brain only knows that a signal was received that indicates an injury and it causes the immune system to react and send the usual repair crew to the perceived site of the injury. That is how swelling and inflammation happens at sites remote from the original injury; the RSD has spread.

Pain and the brain.

All nerve signals have the same amplitude (strength).
The intensity of the signal is determined by the frequency of the signal, how often it is sent. Mild pain means a low frequency signal train, severe pain means a high frequency signal train. The higher the frequency the more severe the pain.


The brain.



The brain is plastic.

The brain is changing all the time. Neurons die and neurons are born as we experience and forget.

I think of the brain as having different networks for different tasks and sensations.
These networks are weakened or strengthened according to how often and how strongly they are stimulated. The two networks that concern us with RSD are the pain network and the pleasure network. When we are in pain, we find it difficult to impossible to feel pleasure and the pleasure network, getting little or no stimulation, weakens and starts to die off. The pain network, being stimulated constantly and strongly starts to grow new neurons and sends out new sprouts that connect back to other neurons in the pain network forming a feedback loop that is similar to an electronic oscillator. The pain has become self perpetuating.

In order to reduce the pain network in size, we would have to stop the pain and increase the pleasure so that the pleasure network will grow again and the pain network will shrink. Narcotic pain medication seems to be the only way to reduce the pain for most people. For myself, not having had access to narcotics, acceptance and making friends with the pain was the way.

Once the pain is, either accepted as a normal part of life or, reduced through narcotic pain medication, we can start to feel pleasure again and that pleasure will grow the pleasure network and decrease the pain network.

The real story is, of course, much more complicated and involves many chemical neuro transmitters and hormones and one would have to be a neuro biologist to really understand it but, I have benefited a great deal from thinking of RSD in those terms.

Physical activity is, of course, very important to living with RSD.

There you have my take on RSD overthehill.
I am always happy to talk more about the subject if you or anyone else is interested.

Have a good day and don't ever lose hope.
We may not be able to find a cure but, we can still have a good life even with RSD.

woodsman