Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 01-07-2010, 03:16 AM #1
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Originally Posted by Wilbyfree View Post
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
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Old 01-07-2010, 11:02 PM #2
Wilbyfree Wilbyfree is offline
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Originally Posted by keep smilin View Post
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
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Old 01-07-2010, 11:18 PM #3
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Default Tremors

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
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Old 01-10-2010, 05:22 PM #4
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Default Normal? =)

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."
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Old 01-10-2010, 05:56 PM #5
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I feel like a big baby for even bringing up my tremors as they seem so minor in comparison to what others here experience. I've developed a tremor in my left eye and deep in my rsd foot. The eye tremor has been increasing in intensity and frequency for the past couple of months and I feel like I must look like a freak when it happens and I'm talking to someone. I video taped it so I could see what it looks like and it doesn't look as bad as it feels. My doctors don't know what to say about it.

Warm wishes.

MsL
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Old 01-10-2010, 06:15 PM #6
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Originally Posted by Mslday View Post
I feel like a big baby for even bringing up my tremors as they seem so minor in comparison to what others here experience. I've developed a tremor in my left eye and deep in my rsd foot. The eye tremor has been increasing in intensity and frequency for the past couple of months and I feel like I must look like a freak when it happens and I'm talking to someone. I video taped it so I could see what it looks like and it doesn't look as bad as it feels. My doctors don't know what to say about it.

Warm wishes.

MsL
Hello Friends... Suz66 and MsL... no worries about silly questions or minor symptoms ..as I see it.. you as the rest of us are suffering thru the battle of ugly RSD.. what ever the symptoms it brings on they are dreadful... I, too have a great big line of deminsha in my family..Currently my Mom is at the moderate stage of it and both of my grandmothers... so I really don't know how our RSD memory lapse is realted or if it could walk thru into an early demnisha..I do know however... that we know how they feel when we just can not recall a question or what we wanted to say... Just today..I took a water bottle from our refrigerator while making my lunch... Silly me I turned around and grabbed another... then I saw that I had two bottles out... dang!!! I quickly returned one as I can NOT even remember taking the first bottle out... minutes before... geez...I am a mess, I tell ya!!

Great to hear from you all.. I think the most comforting part of RSD I can come up with is it feels so wonderful to have met such nice friends here on this forum... We are here for eachother and we are never alone, as lonely a fight this is with our illnesses..we are still...........never alone!!!

Love, KS
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