Complex Regional Pain Syndrome

[Stetson]

Hi everyone,

I was wondering if anyone has heard of this? I've been having trouble with
my left leg for over a year.The medication I take for my neck issues doesn't
touch it! I've been given lyricia to take 3x a day but it makes me hungry as
hell and sleepy.It also give me bad involuntary muscle twitching.So I only take
it when I have a bad attacks. I take topomax 3x aday.I am told there is no cure and it progress to other parts of the body mainly limbs.This sydrome is
treated by pain management with drugs like lyricia,neuroton,topomax.I guess
this is not common so I am looking for some feedback as I looked up all I can
on internet.I guess central nerves system is damaged and this is the way the
body reacts. Thanks Again.I hope you all are enjoying a pain free day!

Stetson

[Mark N]

Stetson, I have heard of this in my readings. I don't remember alot of things about it though. I wish you the best and hope you don't have it spread to your other limbs. Maybe someone will answer that has some experience with this condition.

[houghchrst]

From what I have read it is rare for it to spread to other limbs. I hope someone here can help you and you find a way to get treatment and relief.

[Tbackpain1]

There is a CRPS forum here, so I'd definitely check out the resources they have listed in their forum as well.

I have a couple of people in my support group that have CRPS as a result of surgeries. Some do use medication management (antiseizure drugs; antidepressants, corticosteroids, and opioids) to treat their pain, but they also get injections done to block the nerve signals...I believe it's called a stellate ganglion block, but I could be wrong on that. Two of them now have intrathecal pain pumps to manage their limb pain, after escalating doses of oral opioids failed to maintain long-term pain control.

Theresa

[A.K.]

Hi Stetson,
CRPS is the new name for a very old diagnosis called Reflex Sympathetic Dystrophy. It's so old it's been around since the Civil War actually.

My pain management doctor changed my diagnosis to RSD about a year ago because my pain (originally caused by nerve damage during surgery) went bi-lateral and then proceeded to other places in my body. I also have other classic symptoms which hypersensitivity in the original area of pain along with a burning sensation.

You are correct there is no known cure and it does usually spread, different rates for different people. In almost four years mine has gone from my right thigh to the area between my mid-back and my knees. I also have fibromyalgia so it's a toss up as to whether the pains I have developed in my arms and shoulder blades are FM or RSD.

Good news is I haven't had any new areas in over 6 months.

I take Topamax but am unable to take both Neurontin and Lyrica. I am missing part of my lymphatic system due to some tumors and blood clots that were removed when I was a teenager and both of those drugs cause my legs and feet to swell terribly. Lyrica almost put me in the hospital due to the extreme swelling as I developed cellulitus in my ankles and feet and my tops of my feet actually ruptured before the swelling stopped.

Every person that I have talked to who has taken or takes Lyrica has some weird, often severe side effect.

Anyway....my pain has never been under control. Hopefully, yours will be.
A.K.

[Stetson]

Lyrica makes me hungry and it makes my feet swell so it's not good for me
to use all the time.I do use topamax daily so I mai ask for an increase on this med as I tolerated compared to lyrica which causes me to gain a bunch of weigh and swell at the ankles.

[debhun]

I had bad swelling too with lyricia. I might be wrong but I don't think you are to take lyricia as needed but on a every day dose. I would check in on that one.

Deb

[A.K.]

Deb,
You are correct. Lyrica is prescribed to be taken every day. I took 150mg twice a day before stopping altogether.

[gizmogirl]

MAke sure that you get regular blood tests for liver enzymes when on Topamax, especially in the first year you want to do ita couple of times to make sure you do not get toxicity - it recommends this in the insert.
Too bad that you have to take eithr Lyica OR neurontin = I got all the side effects and sleepiness, and eventually found that taking more opiates worked better for me.
Good luck adn I pray you get releif soon.
Jane

[Kathi49]

Hi Stetson,

I am sorry you are suffering like this. But I wanted to say I am glad you brought this up in this forum even though I realize there is an RSD forum. I orginally wrote a long post but was blown out of the water for taking too long LOL! So, I will just echo what Theresa and and A.K. have said. Mine is such a long story and everyone has already heard it. So, I will just say that I am trying to manage, not RSD, but Central Pain Syndrome, differently. And I just wanted to wish you luck with the Topomax. That is something I haven't tried. But I do have a list a mile long of all the meds I have tried...I am just hypersensitive to a lot of them. Anyway, I am going to take the advice of my Spinal PM, my Neurosurgeon and my Neurologist and try some different things along with staying on the usual meds I take (Klonopin and Vicodin). I am even thinking about taking a Vicodin holiday...it just depends. But I DO wonder sometimes if the opiates aren't contributing to some of this. And I am just basing it on things I have read and what Theresa alluded to. Also, I HAVE noticed before, after stopping Vicodin and then going back on it...an increase in burning. But I also know everyone is different with different issues and conditions.

Anyway, thanks again for bringing this topic up. :)

[Stetson]

This is a secondary problem I have as I am diabetic ,I thought it was neurotic pain but my Diabetic Doc knew what it was right off! All the meds
I take are for a neck fusion C4-5-6 that's caused nothing but pain to the point of wanting to jump off bridge ! It took me three years before doctors would start givening me narcotics,3 years of the most depressing hell on earth
I have ever suffered.The pain was so bad it just took your breath away and no one would help!Finally got the help and there's no way in hell I would plan
on taking a drug holiday!I take everything as prescribed and don't calling for
early fills.Doctors know I am not abusing meds.I told them I will take any test
any time ,any where. Being pain free because of medication is priceless.I was good until a year ago when I started having pain in my left leg and foot.We still haven't solved it yet.Lyrica not the answer for me as it aggravates all
the conditions it's suppose to help.

[Kathi49]

Stetson,

I can relate to what you are saying about the cervical spine. I KNOW the pain can take your breath away and I didn't get the appropriate help either for 3 years. It was he@@ for me too! That's why I don't want to revisit those years of taking med after med after med; they just didn't work or didn't help. I finally switched doctors and in the long run had two fusions. I have also had troubles with my left leg, ankle and foot...and BOTH feet will burn. But most of the left leg bit is due to my lumbar and sacral spine. I also was tested for diabetes and I don't have it. So, this feet burning deal is a separate issue I believe but it is not RSD. That much has already been determined because it was one of the first things I thought of.

Anyway, my point was...I just WONDER sometimes if certain meds didn't cause it OR make it worse. That's why I said the only way for me to tell is to stop the Vicodin, try PT for instance and see what happens. I can't tolerate Neurontin or Lyrica at all; have been on so many different kinds of meds as well. I am to the point of simply trying something different. And, well, the docs say...keep moving (exercising). So, aqua therapy it is for now. It may help or it might not. But even if it doesn't rid me of neuropathic pain at least I can take the weight off the joints and exercise some muscles if nothing else.