[keep smilin]

So those of you who experience this quiver..RSD involuntary moving of limbs, mine mostly is my legs..This part of RSD is fairly new to me...and happens when my alrt is up as in a crowded groups of people...almost fear of being on "show" or display... almost seems like a symptom of Parkinson's.. but know it must be part of my RSD.. should I expect this to get worse over time??

[loretta]

Originally Posted by keep smilin

So those of you who experience this quiver..RSD involuntary moving of limbs, mine mostly is my legs..This part of RSD is fairly new to me...and happens when my alrt is up as in a crowded groups of people...almost fear of being on "show" or display... almost seems like a symptom of Parkinson's.. but know it must be part of my RSD.. should I expect this to get worse over time??

Hi keep smilin, Yes, that is a symptom for many of us with RSD. My involuntary movement in my legs came several years into RSD, after it became full body. RSD is an autonomic disorder, meaning involuntary symptoms of various organs. My Doctor put me on neurotin, and it stopped the involuntary jerks, jolts, spasms. I was on 3200 mg in order to stop the symptoms. Mine got worse to include electric jolts, jerks, that would occur during sound sleep and go thru my body and thru my brain, so violent it would raise head off the pillow. But, like I said, they stopped with the high dose of neurotin. I later changed to Lyrica, 400 mg. which worked better for my nerve pain. Both caused weight gain.I went off gradually over a year ago, and the symptoms did NOT return.
Anxiety is a part of RSD. RSD affect the Limbic System of the brain that controls anxiety, depressions, So I take lorazepam to help control being anxious. It works well. I also take Cymbalta 120 mg. for depression and anxiety. It also has component to help with nerve pain. I just saw my Dr. yesterday, he is a neurologist, psychiatrist and pharmacologist. We discussed my meds yesterday-I really feel his knowledge of RSD and meds have made a huge difference in my health-am in a better place than in past years. I am completely mobile, except one hand is partially frozen-delay of diagnosis and treatment. I wasn't diagnosed for 4 years..
For me, physical therapy and massage therapy, swimming, water exercise -86 water temp. have keep me mobile. I've had this 15 years and now full body and internally.
Many of us withdraw from groups of people, but it is important to be part of society, and not isolate. For me, the anxiety meds are essential. It's important to remember not to drive following taking certain meds. I wait 4 hours before driving-doctors orders. So afternoons are my window of time to drive, have appointments, etc.
Hope the best for you. your friend, loretta with soft hugs

[keep smilin]

Originally Posted by loretta

Hi keep smilin, Yes, that is a symptom for many of us with RSD. My involuntary movement in my legs came several years into RSD, after it became full body. RSD is an autonomic disorder, meaning involuntary symptoms of various organs. My Doctor put me on neurotin, and it stopped the involuntary jerks, jolts, spasms. I was on 3200 mg in order to stop the symptoms. Mine got worse to include electric jolts, jerks, that would occur during sound sleep and go thru my body and thru my brain, so violent it would raise head off the pillow. But, like I said, they stopped with the high dose of neurotin. I later changed to Lyrica, 400 mg. which worked better for my nerve pain. Both caused weight gain.I went off gradually over a year ago, and the symptoms did NOT return.
Anxiety is a part of RSD. RSD affect the Limbic System of the brain that controls anxiety, depressions, So I take lorazepam to help control being anxious. It works well. I also take Cymbalta 120 mg. for depression and anxiety. It also has component to help with nerve pain. I just saw my Dr. yesterday, he is a neurologist, psychiatrist and pharmacologist. We discussed my meds yesterday-I really feel his knowledge of RSD and meds have made a huge difference in my health-am in a better place than in past years. I am completely mobile, except one hand is partially frozen-delay of diagnosis and treatment. I wasn't diagnosed for 4 years..
For me, physical therapy and massage therapy, swimming, water exercise -86 water temp. have keep me mobile. I've had this 15 years and now full body and internally.
Many of us withdraw from groups of people, but it is important to be part of society, and not isolate. For me, the anxiety meds are essential. It's important to remember not to drive following taking certain meds. I wait 4 hours before driving-doctors orders. So afternoons are my window of time to drive, have appointments, etc.
Hope the best for you. your friend, loretta with soft hugs

Loretta..... Thank you!

You are a dear..thank you for your quick informative response... I wonder one more thing...how about our forgetfulness? I realize I am "dropping" the ball with questions being asked over and over and doing things that I admittable can not remember what and where...so tell me..have heard that too is an RSD thingie?? Oh my if so were messed up....

[loretta]

Originally Posted by keep smilin

Loretta..... Thank you!

You are a dear..thank you for your quick informative response... I wonder one more thing...how about our forgetfulness? I realize I am "dropping" the ball with questions being asked over and over and doing things that I admittable can not remember what and where...so tell me..have heard that too is an RSD thingie?? Oh my if so were messed up....

Hi keep smilin, YES, forgetfullness is part of RSD. That can be part of hard feelings, us not remembering what we have said, or not remembering what someone has said to us. It has to do with the Limbic part of the brain. that is affected by RSD. It's why we can be talking and not remember what we were going to say, or we grope for a work that just disappears. I had to stop answering our business phone, I would forget a cumstomer would call with an order for coffee, and they would get mad when the coffee didn't show up.
There is a thread on the front page from Sandel, It's about current medical evidence showing 5 parts of our brain being effected by RSD. It's good. and the one just to the right of it-a video of Sarah McGlouglin singing Angel about RSD.
It's also why we have anxiety, depression, parts of our brain being affected by RSD. I take lorazepam, an anti-anxiety med that helps me so much. When I was diagnosed full body in my 10th years of RSD, the neuro suggested I see psychiatrist to help me adjust- I didn't like his two recommendations, so looked at the yellow pages and found a jewell. Moved here from New York, a Psychiatrist, Neurologist, and Pharmacologist. I call him my 3 in 1 Dr. He also teaches, and does pharmaceutical trial studies. I was just in a 200 person study he did. It's a miracle I'm sleeping again 10 hrs. a night. I was able to drop down in pain meds and anxiety med. He just built two clinics that each have a HBOT in them and I'm saving for treatment. I saw him once a month for 5 years and now once every two months. I can't wait to try the Hyperbaric Oxygen Chambers. He's been on TV with some of the fabulous outcomes. I saw him yesterday. A couple years ago my toes started curling up off the floor. He had me in the pool every day doing exercises and in about 4 months my toes were touching the floor again. Having the right treatment as soon as possible is critical. I am fully mobile, with the exception of one hand. I pulled nerves while water skiing-misdiagnosed, with RA. I knew I didn't have arthritis and Drs. tests showed negative, but he insisted I had it. So I flew a few states away where we were from and the sports injury ortho, saw my hand and diagnosed RSD within one minute, sent me to hospital for nuclear med test that was positive. He started me in pt next day and I got partial use of hand back. It's kinda like a claw, but I can cut my own food, button clothes etc. So I'm grateful for that. I also did desensitization, which is critical. Both at the ortho pt and at home. (I flew back to AZ and got a neuro and ortho hand specialist.
Take 5-6 plastic bowls, Fill them with cotton balls, coffee grounds, sugar, beans, etc. and can run hands and feet thru the different textures. It's important to desensitize our bodies, or we hurt from clothes, sheets, being touched. Hope that makes sense. Four years prior to my water skiing thing, I had breast surgery, benign, but got RSD in left shoulder right after surgery. The doc sent me to rehab dr. and pt- It took 100 treatments to get full range back. I did massagae therapy on my own. Massage therapy is still wonderful. It promotes circulation, desensitizes, keeps muscles stretched and mobile.I hope this helps. Stay strong, and you CAN get motion back. I'm grateful for the therapy I've had, and continue to have-although not weekly. Insist from WC, if you are dealing with them, on pt. massage therapy, and counseling. I can't remember if you are dealing with WC or not.
I paid myself for massage therapy and counseling, but WC does pay for it.
Keep Smilin, please know we care about you and what you are going thru. Please don't hesitate to ask questions-keep positive-Stay strong, and fight for your rights. I didn't sue the Dr. behind my RSD, it was so long after the surgery that I realized the RSD came from the breast surgeon. It takes so much to fight medical world, WC. Insurance. I know-we sued the Dr. that killed my Mom. Yes, we won, but came at a great emotional cost. My Dad never recovered and died. We had video deposition, as we knew she wouldn't be alive for trial, and showed the video at trial.
My daughter is a court reporter and deals with medical malpractice issues, even RSD since she became a reporter 10 years ago.
Take care, loretta with soft hugs

[keep smilin]

Originally Posted by loretta

Hi keep smilin, YES, forgetfullness is part of RSD. That can be part of hard feelings, us not remembering what we have said, or not remembering what someone has said to us. It has to do with the Limbic part of the brain. that is affected by RSD. It's why we can be talking and not remember what we were going to say, or we grope for a work that just disappears. I had to stop answering our business phone, I would forget a cumstomer would call with an order for coffee, and they would get mad when the coffee didn't show up.
There is a thread on the front page from Sandel, It's about current medical evidence showing 5 parts of our brain being effected by RSD. It's good. and the one just to the right of it-a video of Sarah McGlouglin singing Angel about RSD.
It's also why we have anxiety, depression, parts of our brain being affected by RSD. I take lorazepam, an anti-anxiety med that helps me so much. When I was diagnosed full body in my 10th years of RSD, the neuro suggested I see psychiatrist to help me adjust- I didn't like his two recommendations, so looked at the yellow pages and found a jewell. Moved here from New York, a Psychiatrist, Neurologist, and Pharmacologist. I call him my 3 in 1 Dr. He also teaches, and does pharmaceutical trial studies. I was just in a 200 person study he did. It's a miracle I'm sleeping again 10 hrs. a night. I was able to drop down in pain meds and anxiety med. He just built two clinics that each have a HBOT in them and I'm saving for treatment. I saw him once a month for 5 years and now once every two months. I can't wait to try the Hyperbaric Oxygen Chambers. He's been on TV with some of the fabulous outcomes. I saw him yesterday. A couple years ago my toes started curling up off the floor. He had me in the pool every day doing exercises and in about 4 months my toes were touching the floor again. Having the right treatment as soon as possible is critical. I am fully mobile, with the exception of one hand. I pulled nerves while water skiing-misdiagnosed, with RA. I knew I didn't have arthritis and Drs. tests showed negative, but he insisted I had it. So I flew a few states away where we were from and the sports injury ortho, saw my hand and diagnosed RSD within one minute, sent me to hospital for nuclear med test that was positive. He started me in pt next day and I got partial use of hand back. It's kinda like a claw, but I can cut my own food, button clothes etc. So I'm grateful for that. I also did desensitization, which is critical. Both at the ortho pt and at home. (I flew back to AZ and got a neuro and ortho hand specialist.
Take 5-6 plastic bowls, Fill them with cotton balls, coffee grounds, sugar, beans, etc. and can run hands and feet thru the different textures. It's important to desensitize our bodies, or we hurt from clothes, sheets, being touched. Hope that makes sense. Four years prior to my water skiing thing, I had breast surgery, benign, but got RSD in left shoulder right after surgery. The doc sent me to rehab dr. and pt- It took 100 treatments to get full range back. I did massagae therapy on my own. Massage therapy is still wonderful. It promotes circulation, desensitizes, keeps muscles stretched and mobile.I hope this helps. Stay strong, and you CAN get motion back. I'm grateful for the therapy I've had, and continue to have-although not weekly. Insist from WC, if you are dealing with them, on pt. massage therapy, and counseling. I can't remember if you are dealing with WC or not.
I paid myself for massage therapy and counseling, but WC does pay for it.
Keep Smilin, please know we care about you and what you are going thru. Please don't hesitate to ask questions-keep positive-Stay strong, and fight for your rights. I didn't sue the Dr. behind my RSD, it was so long after the surgery that I realized the RSD came from the breast surgeon. It takes so much to fight medical world, WC. Insurance. I know-we sued the Dr. that killed my Mom. Yes, we won, but came at a great emotional cost. My Dad never recovered and died. We had video deposition, as we knew she wouldn't be alive for trial, and showed the video at trial.
My daughter is a court reporter and deals with medical malpractice issues, even RSD since she became a reporter 10 years ago.
Take care, loretta with soft hugs

What a story, Loretta... I so appreciate your kind caring wishes and thoughts... Funny with my forgetfulness..I sniker now as my family notices it..and I bet on any given day I ask if our dog has been fed and who has homework at least 10 times...never even once do I know what the answer was!! My story began in Jan.07, least that I am aware of...(headaches, terrible still and hearing loss and ear pain prior but never made a connection..RSD? maybe..maybe not, I do think so)... anyway I began having trouble walking.. gradually it was so painful to walk and increasingly difficult...we went on a family vacation by the time we got back I had vowed to myself I needed to see my ortho. (he had done knee surgery 6 yrs. prior which healed fine)...so in April I saw him..long story short..surgery set for a laterial release to be done in Jun of 07....three days prior, I was still working but could no longer hold my body weight up...I crutched into the surgery with a big ugly leg... immediately after the surgery..big purple painful leg...Dr. was stumped so he checked for a clot, twice, neg....began PT/h2o also...nothing helped me... Ortho. gave me the news on 6/26/07, it was my 45th bday.... that I had RSD.... he re-operated in Aug. to manually munipulate my leg then sent me straight into, this is where it was nasty... aggressive Pt..two huge burlie guys merely sitting on me, I am small built.. bull working my RSD leg to point of tears..two weeks straight.. every day!! 3 hrs. each day!!! UGH..Then referred to my current PM Dr. who also knows much about RSD... Many failed attempts with the meds, I get sick... 4/5 nerve blocks..failed .. then SCS which is in but made my RSD very unhappy.. I see a therapist..first I dreaded it but I like her now and look forward to chatting with her... no judgements made in that room.....Now Iam off to PA. Dr. S in March.. I am told by my RSD/PM Dr. I have the most aggressive RSD he has ever treated... No.. mine is not a WC case .... so now I am 2+ yrs. into it..and on 12/3/09... I had to leave my job of 25 yrs. due to my RSD body getting in the way of my daily life... am a bit stubborn but thats coming in handy now.... I loved what I did and my heart is crushed but I am dragging my leg (walk with a pretty cane)..and no gas left in my tank...but I see it as this..I am the luckiest lady in the world as I have lots of love in my heart and I can still smile and laugh.. Sure this condition changes us..for the good tho a we are more appreciative of the lighter small stuff.. But I am okay and know what??? ..We are okay due to that same reason... life is a wonderful gift and I am not ready to cave..no way, honey and I can see neither are you..I love that as that is awesome!!!!

Loretta.. my friend.. you are in my thoughts and prayers...have a wonderful night!! Soft hugs back to you!
KS

[Wilbyfree]

Ladies,
I am new to this forum but not to RSD/Causalgia. Reading your story and then your comments, I am ready to cry. They say I have RSD/Causalgia in my lower extremities and Fibromyalgia in the rest of my body. I asked if the RSD could spread, they said no. I have all of the symptoms that you have mentioned, for years I have been silent, and somewhat neglected by the doctors, even though all of the tests came back positive, they did not treat this and I believe it spread. I do not believe I have fibromyalgia, I believe it is all the RSD and the fact that I have permanent peripheal nerve damage in my right leg would confirm a disruption in the CNS. I guess awareness is the key for this disease.
I do have severe tremors throughout my body, there are times I actually wake my husband up out of a dead sleep because I have shook so bad, there have been times where I have woke up and could not move or feel my body. I am ashamed to admit this, I had a severe leg spasm while sleeping, I have a 10 pound shitzu, that I sent flying across the room and into the wall, (about 3 feet) when I got my leg under control she was standing on the floor looking at me elusive, I felt awful. Now, she sleeps on top of my head (problem solved). The memory and trying to focus to concentrate is also very difficult however I do blame that on some of the medication.

I guess we just really have to hope and pray that they recognize this as a systemic issue and not just about the pain. The pain is awful, but it is really just one of many symptoms. Thanks for sharing

God Bless, Jeanie

[keep smilin]

Originally Posted by Wilbyfree

Ladies,
I am new to this forum but not to RSD/Causalgia. Reading your story and then your comments, I am ready to cry. They say I have RSD/Causalgia in my lower extremities and Fibromyalgia in the rest of my body. I asked if the RSD could spread, they said no. I have all of the symptoms that you have mentioned, for years I have been silent, and somewhat neglected by the doctors, even though all of the tests came back positive, they did not treat this and I believe it spread. I do not believe I have fibromyalgia, I believe it is all the RSD and the fact that I have permanent peripheal nerve damage in my right leg would confirm a disruption in the CNS. I guess awareness is the key for this disease.
I do have severe tremors throughout my body, there are times I actually wake my husband up out of a dead sleep because I have shook so bad, there have been times where I have woke up and could not move or feel my body. I am ashamed to admit this, I had a severe leg spasm while sleeping, I have a 10 pound shitzu, that I sent flying across the room and into the wall, (about 3 feet) when I got my leg under control she was standing on the floor looking at me elusive, I felt awful. Now, she sleeps on top of my head (problem solved). The memory and trying to focus to concentrate is also very difficult however I do blame that on some of the medication.

I guess we just really have to hope and pray that they recognize this as a systemic issue and not just about the pain. The pain is awful, but it is really just one of many symptoms. Thanks for sharing

God Bless, Jeanie

Jeanie,

Hello ..nice to her from you..Sorry our thread is making you want to cry.

My first neurosurgeon who was scheduled to put my SCS implant in was a "believer" of who said..RSD does not spread..He waited so long that my RSD had a chance to spread...I switched surgeons and had my implant in in a matter of two weeks..the original Dr. had already blown thru 5 mos. and still no implant. AND I had a herniated disc which he missed due to not reading my "pre" surgurgical workup... so he missed that too..... When he told me his feeling about the "no possible spread", and I was feeling pain and symptoms in other parts of my body.... I immediately called my RSD/PM Dr. .. he was fuming mad and said it does spread..absolutely..!!!!!!!!!!!!!!

Now we can say our symptoms and pain don't lie!! I am sorry to say but it does spread and we are the reality of this illness. Some of these docs haven't the faintest idea of what it is like to walk in our shoes.... they just collect their paychecks and go home crab about us "whiners" of a little pain!! Right???..right! Your story of waking and moving your 10 lb. dog off your bed is a common one as we move thru the stages of RSD... I , too hate the feeling of these movements, although our dog weighs much more, just a little humor there.... and as far as my forgetfulness..well..I hate that too but it's very real!

Heres wishing you a better nights rest than I am having!!! Gentle soft hugz for you for a good day tomorrow...

k

[Wilbyfree]

Originally Posted by keep smilin

Jeanie,

Hello ..nice to her from you..Sorry our thread is making you want to cry.

My first neurosurgeon who was scheduled to put my SCS implant in was a "believer" of who said..RSD does not spread..He waited so long that my RSD had a chance to spread...I switched surgeons and had my implant in in a matter of two weeks..the original Dr. had already blown thru 5 mos. and still no implant. AND I had a herniated disc which he missed due to not reading my "pre" surgurgical workup... so he missed that too..... When he told me his feeling about the "no possible spread", and I was feeling pain and symptoms in other parts of my body.... I immediately called my RSD/PM Dr. .. he was fuming mad and said it does spread..absolutely..!!!!!!!!!!!!!!

Now we can say our symptoms and pain don't lie!! I am sorry to say but it does spread and we are the reality of this illness. Some of these docs haven't the faintest idea of what it is like to walk in our shoes.... they just collect their paychecks and go home crab about us "whiners" of a little pain!! Right???..right! Your story of waking and moving your 10 lb. dog off your bed is a common one as we move thru the stages of RSD... I , too hate the feeling of these movements, although our dog weighs much more, just a little humor there.... and as far as my forgetfulness..well..I hate that too but it's very real!

Heres wishing you a better nights rest than I am having!!! Gentle soft hugz for you for a good day tomorrow...

k

Hi K,

Thanks for your words of wisdom and reassurance that I know exactly what my body is telling me. I have been saying this for over five years. I knew nothing about this illness, I only know what my body was saying, and it wasn't prettty. The pain, anxiety, tremors, spasms just kept increasing and of course I did get depressed but mainly due to the fact that my doc, who had the knowledge to diagnose the problem and then never treated me. I look back now and I really do not know how I was functioning at all. I was taking two Vicoprofen a day and zoloft. I would ration my medication, on the days I did not work, I would lay around trying not to antagonize this pain to save my medication for the days that I worked. I seen this doc for over three years. Finally, I did seek a pain specialist who confirmed the diagnosis but named it Causalgia type 11, but it was too late for the injections and it had already began to spread through my right leg and left foot. I do have a lot of structural damage to my feet due to the trauma so I am now seeing a great foot and ankle surgeon who is very knowledgeable with RSD. I am so grateful. I am having my left foot fused in April. My right, there is nothing they can do but amputate, I would like to save that for my next life!!

Anyhow, K, I hope you remember who I am...LOL and it was great talking to you and I wish you many peaceful nights, it does help us cope better through our sometimes miserable days. And don't worry about the crying I think I needed to get that out.

Jeanie

[debbiehub]

I am getting tremors in my pinkies and lips- it is so weird. RSD is like a Duracell battery- just keeps going and going-lol

Debbie

[suz66]

I know what all of you are talking about. I wasn't sure if some of these symptoms were normal, either, but have experienced them. I have dumped more than one cup of coffee or bowl of soup in my lap due to a spasm or jerk...luckily it was always at home on the couch. Good laughs from my kids, though. Ha! Also, I worry about my memory lapses; especially since dementia runs in my family. I wonder if the RSD will make it worse or come on quicker. I know that the Lord is in control and do alot of praying. I also cannot take meds so pray when I feel down. It is comforting to "talk" to you on here and read your encouragements. I pray for you guys frequently too. Anywho, I hope you are doing better and that your spasms become less. Take care of yourselves and thanks for all the good insight that each of your bring to "the table."