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 10-18-2009, 05:13 PM #1
AintSoBad AintSoBad is offline
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Originally Posted by loretta View Post
Hi Sandy,
I just wanted to add a couple thoughts I learned while in therapy in the mid 80's before my rsd days. In my family being angry was frowned upon, except of course my Dad could get good and angry. When I child isn't allowed to show anger, it in internalized and internalized anger leads to depression. Does that make sense?
To help to get true feelings outs, talk therapy is helpful, also journaling is so very important. Sometimes we don't know our true emotions till we are writing and then the tears begin to flow. I've even gone to the gravesite and read the letters to my parents. Sometime a person may mail the letter and sometimes we shred the letter.
Yes, Sandy, I've had spasms, electric jerks,jolts going thru my body and brain. It's very scary. There are meds that help with nerve pain, like anti-depressants I was on 3200 mg of neurotin to stop them, then changed to 400 mg. of lyrica. I hated the fogged brain feeling. The Lyrica worked better for me than the neurotin. Now I've been off both almost a year. They both caused weight gain.
I do go to sleep at the same time every night. I'm on a new med, that my Dr. did a 200 personal trial and it's a dream come true. I sleep 10 straight hours, and therefore have less pain, a lot less pain. My pain med of vicodin went down from 6mg a day to 2-3mg. and the anti-anxiety med of lorazepam went down from 6mg to 2-3 mg. I feel like a new person sleeping all night. My Dr. is neurologist, pharmacologist, and psychiatrist. Been seeing him 5 years.
He also just built two clinics with HBOT in each of them. My goal is to go thru the series and maintenance .
Please keep writing ==there is a great collective knowledge here. Although we all react differently to meds.
Take care and let us here how you are doing. Your friend, loretta soft hugs


Loretta,
I usually agree with everything you say, but this time, You've absolutely Nailed it!

Some of these "talk therapists" are far too Freudian for me, which, perhaps lots of you will like.
Not me.
I see a Bust of Freud, I RUN! They're weirdo's! IMHO.

I'd rather depend on my faith, it has NEVER let me down.

You do as you please, what "gets you there", but don't ANYBODY tell me I can't have my FAITH!


RSD, is NOT a reason to bring forth anger from our former years. (In fact, it's the worst thing anyone could do!)
I'm not pointing finger at anyone, of course, just in agreement with Loretta. Freudian therapist like to do what he did, "How was Your Childhood"? Hey, Mine was PERFECT! (Maybe Too Good for Them) That throws them into a spin, every time!

We all have most all symptoms that have been spoken about in this thread. It's no reason to cry, to seek attention (other than our docs, so they know what's happening w/us).

There' a lot of "woe is me" going around, and, a Pity Party is just great sometimes!

I just got off the phone with one of my best friends whom I don't see often any more....

He's a few years older than me, saw me through the death of both my parents, (anyone with parents are Blessed!)
and also knows how I suffer now.
He asked me, Pete (not the name he used, ha), How do you get through this? (He knows me to be a person of action, running two business' and raising two children, alone, and with Rsd...)

I thanked him, for being one to notice. How do I get through this?

Chin Up.
Pick your, (my), Self UP! Every time we fall! Every Time, and I say a few words to God, (through my conduit) J.C.!
NOBODY WILL, NOR SHOULD TRY TO TAKE THAT AWAY FROM ME> AS I WILL NEVER TRY TO TAKE ANY ONE ELSE'S FAITH FROM THEM! SO, STOW THAT, RIGHT NOW!

Chin Up.
Pick Up.
Then, Put on a smile, and, walk outside, to get milk, juice, tastykakes, (Philly thang), whatever, drop off some mail.
BUT< GO TALK TO SOME FOLKS!

WE DON'T HAVE IT THE WORST! BY FAR!

Think you do?

Adopt a child from Africa! 30 bucko's a month.
Then, learn how bad it REALLY IS!
(YOU have Clean Water)...

I'm not heartless.
It's cool to trade stories about how Screw'd we really are, and, True, WE ARE!

But, the best thing sometimes that we can do for ourselves.....
Is to help someone who has it SO MUCH WORSE!

Anyone have a different take?
I'd love to hear it.

AND< NOBODY TELL ME I CAN'T TALK ABOUT MY SAVIORS!
THANKS< I APPRECIATE IT, I SURELY DO! Instead, tell me about yours!!

I love you all , here!
I do.

RSD IS NOT the end of the world.
I know it's stolen dreams, and many things that we've worked for....

BUT, DON'T LET SATAN IN!!!!
RSD, Opens a door for him, and He'd Truly Love To Slip In!

Don't let it happen!

That's what I Stand For!

Peace, and Love to all,

Pete
asb
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Old 10-17-2009, 07:59 AM #2
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Hi Dew,

Sorry to hear about your spasm! I hope you are feeling better now.

I have Myoclonic spasms where my leg will jerk around in the air on it's own uncontrolabley. The spasms started after I had an ingrown toenail removed from my RSD leg in April 2008 and I still have them to this day, despite trying many medications to try and get rid of them. Thankfully, they have calmed down a little bit though, through the help of intense Physical Therapy.

On top of the Myoclonic Spasms, I also have Dystonia which means I can't move my foot at all. My PTs are wanting to try Botox to see if that will help however, i'm not sure if I want to try that at the moment as my body doesn't respond well to any injections/needles.

I'm not sure if you have seen this already, but here is a link to a video of the myoclonic spasms I have in my leg that may help - you can also see the Dystonia in my foot (my foot is rotated out to the side).

http://www.youtube.com/watch?v=qE_OwuilOew

Are you on any medications (muscle relaxants etc) that may help you? I tried Baclofen, Diazepam, Kenadrin and loads of other meds but unfortunatley, none worked in my case and I had horrible side effects from them.

I know what you mean about how bad it would be to get the spasms out in public. My leg spasms like in the video all of the time sometimes which is REALLY embarrassing. I am already self conscious as a teenager, without those! At one point, I wouldn't even go out of the house as I was so scared that people might say something because of how I looked. I still get really embarrassed about them now and it really hurts me when I get comments from people about how my leg looks etc.

Try and get some rest and don't overdo it too much. I tend to find that my spasms are worse if I have done too much or haven't been getting much sleep.

I hope you feel better soon. I know how hard and painful the spasms can be to deal with!

Take care,
Alison
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Old 10-17-2009, 09:38 AM #3
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Hi Dew,

I'm sorry to hear about this and hope you are OK. I can understand how scary this must be for you. Do you have any relaxation music or guided imagery you can listen to. I was able to borrow a few CD's from my local library and burned them so I can listen to them when ever I need to.

I hope you are feeling better.

MsL
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Old 09-14-2010, 03:20 PM #4
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Dew, you don't know me as this is the first time that I have visited this site. I'm sorry about your fall and injury. I'm glad that you posted it, because, I was searching the internet for information on my own horrible nightmare with rsd. I have horrible uncontrolable movements. It is like something out of science fiction. I have had rsd since 2003. This spasaming, jerking, writhing, writhjerking, and head being literally stretched off of my neck has all been going on for the past 2 years. I have just recently been able to sit at the computer for a few moments at a time to look for help. The DRS for the most part keep saying "PSYCHOGENIC" AND I know that is not the case. It all started when I was being weaned off Morphine and the drug they used was not the appropriate one, and not only that but had an adverse reaction to boot. Although, I' m so sorry that you are having to endure your spasaming and jerking, it comforts me that there are others out there dealing with the same problems, and we are not all crazy.
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Old 09-14-2010, 04:10 PM #5
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Default I so sorry to read you had no help when u fell :(

I have never had anything like that yet. I have RSD of the left foot up to my knee. I also have fibromialga that is a monster too!! Its not easy... I too am on S.S. after a sugery Check out the web site www.painandbraincenters.com you could call her to and ask quetions about her treatments 507-410-1144 MN the nicest lady you will ever meet....

Quote:
Originally Posted by Dew58 View Post
I had been up all night, again( still reeling from IME doc visit)...and will have to take a nap,today! I am sooooo tired.The fog is starting to lift here this morning;however, the humidity and downcast weather remains.

Early this morning, I had a jerking spasm so harsh that it turned my computer chair over on my right side, with me in the chair! What a pain,literally !!! Also, scared me to have no control over the jerking episode.

My right side(ribs) hurts where I jerked against the right side of the arm of chair and hit the floor..nothing broken, just bruised some. My pride more than anything else..what if that happens in public? OMG!

Once on the floor, I was crying and had 3 cats that were all around me looking confused. Hubby and son were asleep. They didn't hear me crying or yelling for help. Getting up off the floor was a nightmare. The chair is an office chair on wheels..so you see the scenario better.

Now, since I told my fellas what happened, they keep asking me if I am ok...like every 15 min. Getting on my last nervy.

I have experienced the trembles in my hands,dropping things, minor leg jerks..but never such a jerk that would knock me sideways in a chair to the floor!

Have any of you experienced this form of spasm?



Dew
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Old 09-14-2010, 05:25 PM #6
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Jenna Delaney, are you famiar with this treatment or clinic?
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Old 09-15-2010, 02:01 AM #7
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Hi Dew,

Sorry to hear about your fall, I hope you are okay after it.

Not to be an alarmist, but are it sure it was a jerk/spasm similar to what you have had before and not a seizure ? Please report it to your doctor if in doubt

Take Care !

and get a better chair !!!!!
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Old 09-15-2010, 07:41 AM #8
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This thread by Dew is dated 2009. We have not her from her on this site in quite awhile. I pray she is doing OK and would like to hear from her soon.
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Old 09-15-2010, 06:17 PM #9
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Quote:
Originally Posted by Jimking View Post
This thread by Dew is dated 2009. We have not her from her on this site in quite awhile. I pray she is doing OK and would like to hear from her soon.
I have been thinking about her a lot lately...Dew, if you can read this you are in my prayers everyday since you were the first person who friended me on here...we miss you a whole big bunch!
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Old 09-15-2010, 08:23 PM #10
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This thread by Dew is dated 2009. We have not her from her on this site in quite awhile. I pray she is doing OK and would like to hear from her soon.
UGH !!!!!!!!!!!!!!!!!

I HATE when someone bumps an old thread and I mistake it for current !

It should pop up another color or something (translation.....I'm too dumb to check the date )
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