CRPS and Dystonia

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RSDSissy
New Member


Date Joined Feb 2012
Total Posts : 4
   Posted 2/12/2012 5:30 PM (GMT -6)   
Hi Everyone
I am a new member so excuse the History!
A little history first-----
I had an accident Aug21 2009, where I came down full force on both knees. I was rushed to the hospital and ended up with bruised bones and contusions on both knees. I saw an orthopedic doc who performed many injections in both knees for pain control.

By March of 2010 I was unable to walk and had a total knee replacement performed on my left knee Went through the surgery I guess OK ended up having blood transfusion on the third day post opt. From March through Jun 14Th I was doing great walking without assistance climbing stairs etc. , but still in pain. Was in a lot of pain but shrugged it off.

Then by the third day Jun 18Th I was unable to walk at all and having burning, spikes, needles and oh please don't touch me....feeling from mid thigh all the way down my left leg. I went back to the orthopedic doc who stated he had no clue as to why I was in such severe pain he took xrays and all looked fine. about a month after trying the orthopedic doc and having many test MRI, XRAYS ,and ultra sounds looking for infection or blood clots and all coming back OK.

Jul 15th I ended up in the hospital with what they thought was blood clot in lung or infection from my leg. At this time I couldn't breathe and have very painful feelings in my left leg I screamed just to move it or raise it up to the hospital bed level. My leg turned beet red and very hot then it would turn purplish bluish and very cold. I spent over a week in the hospital and left with diagnostics of bronchitis and no findings as to what was causing my symptoms in my leg. When I was released I had another appointment with the orthopedic doc who then referred me to a neurologist with possible RSD in Aug 2010.

It is now late October and I have been on and still on several pain medicines and one seizure med. Hydromorphone 2mg (daytime)and 8mg night time. Lycra 3 times a day. It is now October 31st as I am writing this I still am either in wheelchair or walker for short distances, in aqua therapy (I love the warm water) It is good therapy I know someday I will be able to walk again (now my left leg and foot has rolled outwards towards the outside. I am unable to bend or straighten the leg. It is torture at night when you need to move. Night time I take 8mg hydromorphine, amitriptyline, 2 tylenol PM extra Strength and 3 lidoderm patches I still wake and scream out in pain. Night time is the worst for me. I just can't have anything touch my leg. I have learned to compensate using my right leg.

Next step for me On November 1st I am see a Pain Management doctor. Yes Finally!!!!! God will release some of my pain. Now you see I have come from a very good area in my life to having it cut from under me in an instance. I hope to be able to return to the life I had but due to the stress, medications and constant pain. I now have no life. Will I ever? What can I do to beat this I refuse to lie down and let it take me but I can't even crawl now. I am at my end I just want things back as they were before the surgery, before I fell that day at work.
Nov 17Th 2010

I saw my Pain doctor on November 1st and I am being scheduled for my first Sympathetic Nerve Block on November 17Th and another on December 1st 2010.
The Nerve block failed I am still in the same pain as I was prior to the block I am feeling nothing different. I spoke to my physical therapist and she stated not to worry. I continue to do therapy. No change in pain. What does this mean?
It is now Nov 26Th I now have pain up in my groin area into my pelvic and hip area. I will wait until I have my second block performed in just a couple of days.

Dec 1st
Nerve Block day thank goodness I hurt so badly hard to walk with my right knee hurting and my left side from my waist down is awful. I mentioned this to doctor as he was preparing me for my block, we will see hopefully this one will work.

Dec 2ND
I am beside myself the block failed again and I just can't take this pain. I called my PM, I am to see him again on Dec 7Th, his office stated for me to call my Nero doctor to see if I can get something for the pain.
I called and they called in an RX for a steroid pack, I am in tears and been in tears for three days now off and on. I went to Aqua therapy cried pain and more pain I feel up my left side. It is hard to move at times. I have a husband for 37years I am 59 he is 76, Hubby has diabetes and is not able to help me although he tries God bless him.

HERE AND NOW!
I moved to Florida to live with my sister at her strong suggestion.
It now has been almost 2 years and I have been through many things trying to cope with this aweful mess of a thing.
DX RSD left knee and recently dx with dystonia. Medical docs are PM, Nero, PT and Aqua, Current medications are Baclofen - 10mg, Sertraline - 50mg, Tramadol ER - 200mg, Hydrocodone/APAP 10mg/375mg, Gabapent 300mg, Diltiazem ER 90mg, Lidoerm Patches 5% Patch. I have suffered acute kidney failure and have been in and out of hospitals many times from the medications. I have endured 3 more sympathetic nerve blocks. My PM is evaluating me for SCS.

I can say that after grieving my old life and with the help of my sister I am a much better person and even able to cope better.

I guess I really need to know now if anyone has developed dystonia and if anyone can help me understand.

Many Thanks for Reading my story
Sissy

Sissy, I broke your post down into paragraphs to make it a little easier to read.

Post Edited By Moderator (straydog) : 2/14/2012 1:33:58 PM (GMT-7)


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 2/14/2012 7:57 AM (GMT -6)   
Sissy....

Welcome to the board... and thank you for sharing your story. I don't share your same diagnosis (CRPS) or have dystonia... but others here do, so I'm hoping they might be able to give you some feedback.

That being said, I do have long-term chronic pain issues... so I do understand how life-changing it is... and the journey we go on to "reclaim" our lives. I'm glad that going to live w/ your sister has helped - and has made you better cope w/ your health issues.

Again, welcome! Take care, Tina

RSDSissy
New Member


Date Joined Feb 2012
Total Posts : 4
   Posted 2/14/2012 10:23 AM (GMT -6)   
Tina thanks for the welcome I was beginning to think no one was going to answer, but you did.

Hugs and Happy Valentines Day
There is Always hope!

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 2/14/2012 11:38 AM (GMT -6)   
Hi Sissy and welcome.

I've been living with CRPS/RSD now for nearly 13 years. I had a knee injury in 1999 that needed minor surgery - and the pain never went away. I spent the first six years being told that I was attention seeking (I was only 14 when I first hurt my knee), finally told by my surgeon that I was mentally ill and he was happy to refer me to a psychiatrist. I hurt the same knee again in 2005 and again needed surgery - knee blew up very badly, followed by the rest of my right leg. Spread to my left leg in '08, followed by arms, back, stomach (gastroparesis). I can't regulate my heart rate, blood pressure or temperature properly. I've done it all - I can't take amitriptyline, neurontin, lyrica or cymbalta, but I'm on topamax - also on mobic and oxycodone, pump, and SCS - so if you've any questions please ask. Been through most of the opioids too - generally can't tolerate them - methadone gave me fantastic pain relief but the vomiting almost saw me hospitalised. Had several sympathetic blocks (lumbar and SGB) four ketamine infusions, magnesium infusion, steroids. Really not convinced that the meds or infusions do a great deal for me other than make me sick.

And... dystonia... it's as limiting for me as the pain is. I have very severe dystonia of my feet and ankles - I had a baclofen pump implanted in '08 and even that isn't helping now - I've also tried botox, physio, splinting, and serial casting.. I've got bursitis in both feet and now ulcers on the left from how badly I walk - when I do. Mostly I need a wheelchair. More recently the dystonia has started to affect my right hand and arm too - this is what mine looks like.


VIEW IMAGE
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Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16765
   Posted 2/14/2012 3:48 PM (GMT -6)   
Hi Sissy and welcome to the chronic pain forum. I am so glad that you found us. Wow, after reading your story, it is so typical of how that horrid disease hits people out of no where. Yes, we do have some members here that have the very same as you and I see that Laura popped on earlier and posted to you.

It sounds like the move to Florida to your sisters was a very good and positive move for you. Your comment about grieving for your old life was right on the money. My psychologist said those very same words, its part of the acceptance process we go through in order to get our lives back on track. We grieve for so many different things and this is normal. I never looked at it that way until she told me about it.

Anyway, I wanted to pop on here and tell you welcome aboard.
Moderator-Chronic Pain Forum

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 2/14/2012 3:57 PM (GMT -6)   
Sissy....

Happy Valentine's to you too! Glad you are here and look forward to getting to know you better :)

--Tina

RSDSissy
New Member


Date Joined Feb 2012
Total Posts : 4
   Posted 2/15/2012 8:57 AM (GMT -6)   
Thank you to all that have so warmly welcomed me to the forum. Saw my PM yesterday we are going to give SCS a try he said I was a good candidate for it and that it will take care of my dystonia and my pain. I just have to see a shrink first then he will put things in action.

CRPSpatient - Wow and I thought I was bad. How do you deal with it all. You are the bravest person I know and that makes me want to be just like you. I too have had stomach issues and have been hospitalized 5 times in the last 6 months. Now I am being scheduled for surgery to correct the issues inside of me. I wish you the best and hope we can be a help to each other.

Sissy
Hugs to you all
There is Always hope!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16765
   Posted 2/15/2012 3:21 PM (GMT -6)   
Sissy are your stomach issues a result of the RSD? A friend of mine has gastroparesis and so does Laura here at the forum.

I don't know how much you have researched the SCS units, but they have been discussed here at the forum. You may want to use our search feature here at the forum and read up on some of those posts. Please do your homework on these units before committing to something permanent.

Keep us posted on how you are doing.
Moderator-Chronic Pain Forum

RSDSissy
New Member


Date Joined Feb 2012
Total Posts : 4
   Posted 2/15/2012 4:07 PM (GMT -6)   
Straydog
Thanks for the reply, I will perform a search on the site to see what I can find. I have been looking and reading sites on SCS. It is somewhat scarey but I have alot of faith in my PM.

Yes my stomach issues are related to RSD and my medications. I am trying to find out about dystonia and treatments that work best, according to my PM the SCS unit will take care of it all. I sure hope so and keep positive.

hugs
Sissy
There is Always hope!

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 2/15/2012 4:17 PM (GMT -6)   
Welcome aboard Sissy. I'm glad you found us but sorry you are suffering so much. I have chatted with Laura quite a bit and so i know how debilitating RSD can be.
I know that Laura has an SCS, so i hope that can help you as well, she also has a pain pump.

I hope you will keep posting with us. The members here are so caring and supportive.

Suzane

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 2/15/2012 5:34 PM (GMT -6)   
Sissy, I hope we can too.

I know that everyone responds differently, but all I can say is that my SCS did nothing at all for the dystonia. The 'only' thing mine has worked for is the skin burn and the very extreme sensitivity to touch. I wouldn't not have it, but I've had a lot of problems with mine - lots of lead migration & three revision surgeries, keloid scarring, back pain, muscle tremors :( I'm also on more medications now - and in more pain - than ever. I'd be very, very wary of any doctor who tells you that it "will take care of it all".

I had oral baclofen - 60mg - which helped initially. I've tried botox injections, which I know have helped a few people, but I had an odd reaction to it (I've also had botox in my stomach for the gastroparesis and had a reaction to that). I've also tried bracing and casting like I said - but my legs tend to just 'over-swell' the casts and the straps from the braces leave enormous marks in the oedema that I/we are worried will turn quickly to pressure sores.

I'm yet to raise it with my PM (actually seeing him tomorrow) - just had discussions with my physio - but I'm planning to ask whether surgery to correct the deformity is an option - or at least how he feels about me getting an orthopaedic opinion.

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

renecelinexo
New Member


Date Joined Mar 2012
Total Posts : 1
   Posted 3/1/2012 9:52 PM (GMT -6)   
Sissy,
You are actually the first person that I am responding to on this forum.  I am a newcomer to the forum and when I first saw your accident and what you had been through made my foot begin to ache and burn all over again.  I can offer little advice regarding RSD.  I have been through every treatment, every drug, I have a spinal stimulator and also have an implantable pain pump.  Nothing has been success.  I am seeking another pain managment physician at this time because I can't find one doctor that will provide pain medicine for breakthrough pain and provide pain through a pain pump also.  My spinal stimulator has only given me about 20-30% alleviation in my pain and if I had to choose it again, I would not choose to put my body through that surgery.  They make it seem like the surgery is easy, but it takes a good 2 weeks before your back on your feet.  I do have one piece of advice that may help though.  If you suffer from issues of RSD such as pain even with light touch, like sleeping with anything touching your knee or left leg, find a large laundry basket and cut a hole around either small side.  You can then put your covers OVER your leg but still have the covers over your chest.  This has saved my life!!  Because of the holes that are around the front of the basket, this re-circulates the air from your body and you actually stay warm during the night.  I'm going to save many people's lives with this one day when I'm well enough to do it.  Please  let me know how your doing.  Ask me anything about the stim.
 
Julie

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 3/2/2012 12:13 PM (GMT -6)   
Hi Julie, and welcome here. As this is topic is a few weeks old, can I as you to start a new one and introduce yourself, so that we might all welcome you properly?

Thanks, Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump
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