Central Pain Syndrome

[rdittman]

Hello to all,

 

I was diagnosed with CPS about a month ago, many months after my stroke. My symptoms are burning in my feet and hands, sometimes in my arm and leg, and the occasional sharp, stabbing pain, mainly in my arm.

 

My question is, if you have CPS, or care for someone who does, is it relagated to the side affected by the stroke? I seem to be having pain on my good side, almost worse than my affected side.

 

Bob

[Guest mjh]

Hi Bob,

 

I have Central Pain Syndrome (CPS). It's in my stoke-affected (left) side and is a burning in my hand, cheek, left arm and left leg.

 

I have found a lot of good information on the web site http://www.centralpain.org/

 

The pain gets worse whenever I am sleeping, particularly if I sleep on my non-affected side (go figure?). It also gets worse if I am stressed out or tired. No medications give any relief but a moderate amount of alcohol dulls the pain.

 

CPS is usually due to damage to the thalamus which is the brain's input filter for the senses. That's exactly where my stroke dameage was and the damage was made worse by the radiation (Gamma Knife) treatment to close off the wayward arteries in my brain.

 

I don't think CPS ever goes away.

 

PM me if you want to share experiences.

 

Martin

[bstockman]

Hi Bob I have CPS also .... mainly on my affected side now. I had burning in my leg.. The Dr. put me on a new anti-depressant. It is used for neuropathy for diabetic patients. It has helped a great deal. The medication is called Cymbalta. I sleep much better now also.

 

 

[tom71]

Yep I have it too the awful burning all in my affected arm and leg.I've been dealing with it 4 years now

God bless,

tom

[rdittman]

Does anybody out there have it in their non affected side? I'm thinking that having it on the non affected side is a bit strange.

 

Bob

[bstockman]

I get pain on my right.. non affected side. Used to get it in my shoulder.. stabbing pains. They have gone away.. I don't know if the pains I get on my right side.. are part of CPS or .. just getting older. they are different than the burning sensation I had in my left leg

[jo31]

I have pain on my left side- non affected side. So I'm a barrel of fun. Right side is uncoordinated and my eye closes when I laugh. Left side is in constant pain. It seems to be worse at night when I try to sleep. My current medications are- Lyrica 2x/day, Elavil at bedtime, Warfarin, and not Provigil in the am to help me try ot stay awake. The Provigil is new and I have nothing yet to report on how it is working. Switched to Lyrica in November due to Neurontin making me fall asleep everywhere and a 30lb weight gain. I can't miss the Lyrica or whatever pain medicine I have been on or the pain is unbearable. I also have Ambien for the nights when I just can't sleep at all......

[sgriffin]

Hi Bob,

 

I just wanted to add that I too had the pain on my non-affected side "my right", it was the strangest thing but even stranger is that it started several months after the storke and then disappeared. It only happened while I slept and it would bring me to tears, so I do understand. The docters didn't know what was happening I learned about CPS from this site.

 

Well a few months ago I was placed on Topramax for my migraines and the pain returned not to mentioned all my deficiets were hightened and they are mostly invisible, so I learned from a neuropysch doc that they call it "Dopamax" because that's how it makes you feel. I couldn't take the pain so I stopped the meds (with the docs advice) and within 24hours the pain and the drugged feeling has been gone...I am now 17 months post-stroke and that pain has stopped..."knock on wood". Hopefully everyone will get some relief soon it is very painful.

 

sgriffin

[rdittman]

Thanks to everybody for your replies. I was up several times in the night in the past couple of weeks because of the pain. I appreciate everybody's input.

 

I was on Lexapro, but it didn't work. I start Cymbalta tomorrow. We'll see how it goes. I have Vicadin for pain, but I hate taking it as it makes my head weird.

 

I get amazed about how much there is to know about post-stroke care. I guess it's a life long process for me to get to know.

 

Blessings everybody,

Bob

[glaidice]

hi bob - i've had a little bit of discomfort on my unaffected side (right). Since i'm not on any blood thinners i've found that a little alcohol in the evening helps with my pain. :cocktail:

[smarshall]

Hi Bob,

My symptoms started months after the stroke, and are usually aggravated by cool/cold damp weather. The left side of my neck, and my left arm and hand are affected. I don't have any temperature sensation on my entire left side, but applied heat is somehow comforting. :uhm:

Susan

[diannecpa]

Hi, I'm new! I've started Cymbalta last week and discovered that some herbal tea was causing a problem. Apparently it contains something that comes from some antlers and is bad. So I think I'll take a little of the herbal tea then take the 30 mg Cymbalta. It seems that Cymbalta makes my right side (affected side) more respnsive. Ive had my second brain attack on Feb 4, 2005. My initial brain attach was on aug 14, 2003. it was very minor and I didn't get terrified. I SHOULD HAVE!!

[jwatrous]

I never had these symptoms and to be sure they are stroke-related, ask your doctor as they could be symptoms of diabetes - neuropathy?

June :cheer:

[smarshall]

My stroke affected both sides of my body. The side that I have the pain on, the left side, I have sensory-related deficits; the right side has motor-related deficits.

Susan

[rdittman]

June makes a good point. If you have symptoms of burning and/or pain, you may want to get checked for diabetes. Diabetic neuropathy has many of the same symptoms as CPS.

 

I have been checked for diabetes, and don't have the disease, so CPS was the diagnosis arrived at for me.

 

Bob

[centralpain101]

It is great to see the term "Central Pain Syndrome " being used on this board instead of Thalamic Pain Syndrome or any of the many other terms... its very hard to get everyone using the same term. Once we do it should become more obvious to NINDS and researchers that CPS is not rare and something must be done to help the hundreds of thousands that suffer daily from this stroke affect.

 

As a positive step toward getting the front line Drs, nurses, pts and the rest of the professionals we come in contact with daily to be more on top of dxing and treating CPS...... I would like to announce that CPSA <<www.centralpain.org>>is in the process of producing a 2 disk DVD set that will educate those that need the science education and understanding about CPS and to help patients and loved ones that suffer through this life long 24/7 pain.

 

The production staff is open to participation through brainstorming what you would like the world to know about CPS and participation through interviews of patients and caregivers. Feel free to drop me a line and we can talk.

 

You are not alone in this stroke affect. We understand. And we can help with ideas for therapys and meds.

hang in

Mary Simpson

[Al2006]

Hello Bob,

I have CPS that affects the whole right side of me. I can tell you it is the pits. I have the cold, burning, aching and muscle twitching. My arm and leg feel like they are asleep. My foot feels like I'm wearing a wet boot. I'm always checking to see if something spilled on my leg because I get a wet feeling. I'm always checking my hair because it feels like something is crawling though it. It drives me nuts.

I am now taking Gabapentin(Neurontin). It has not done much for the daytime symtoms, (mine gets worse if I move), but it does let things calm down if I lay still so I can fall asleep. My new Neuro says that we'll need to adjust as we go, or maybe find a new drug. Laying on my right side also makes it worse.

I get relief from a hot bath. This helps me while I'm in it, but as soon as I'm out of the water the pain is right there, but I welcome the short break. Hot baths make some people feel worse.

I am on Plavix and Aspirin, so I dont drink much alcohol, so I cant say that it helps me.

None of the CPS sites I've looked at say it can affect the non-stroked side of the body. I know from experience that a Neuro with training in CPS is essential. Awareness of it is going to do you no good. I had a Neuro with awareness of nerve pain as he called it, and what to do. He gave me the right drug, but not even the minimum dosage. He did not explain to me what was going on. Now I've found a Neuro that has training. She looked at my test and told me I'm not crazy, but that I have CPS. She told me to look at the National Pain Center's site to help me understand what I'm going though.

CPS is not the same for all. In some it starts long after a stroke, some right after. Some it last a while and goes away never to return, some it last forever.

In general drugs are only used to get the pain to a point where you can live a somewhat comfortable life, not to make it go away.

Al

[lady k]

i DON'T HAVE CPS BUT I am sensitive to the cold, it seems like affected side won't shiver so instead goes into massive spasms. sometimes just to much wind on my bare skin is to much. I also can't tell temp on the affected side a drop of cold water could be boiling as far as feeling goes. any large degree of diff from body temp feels wrong and i jump or pull away like from fire. I hope you find out what works for you. :hug: :dribble:

[ekh92206]

I've also been dx with CPS. I've tried everything, Lyrica, Keppra, Tegrotal, Elavil, Cymbaylta, and Neurotin. Nothing has helped at all. Has anyone tried anything that has been successful. I can't imagine having to deal with this for the rest of my days.

[Guest wsteinlauf]

Hi Bob,

 

I have various pains all over. Someone mentioned Cymbalta and that is really effective because it is a combination anti-depressant (who doesn't need that ) that contains a non-narcotic pain remedy. It has really, really helped me.

 

I had two brain surgeries, and I get these really painful, stabbing pains in my head at the craniotomy site and also on the opposite side that contains the shunt. I also have a lot of pain emanating from my right knee, but that could be unrelated arthritis.

 

I don't know what to suggest except try a pain reduction specialist or press your doctor(s) for alternative treatments.

 

Good Luck, Best Regards, WALTER

[smarshall]

Hi,

My central pain fortunately does come and go. For me it's my left arm, shoulder, and the left side of my neck. (The stroke I had affected both sides of ny body; the left side has sensory damage, and the right side has motor damage.) I seem to be bothered most by it when it's cool and damp, and even though I have no temperature sensation on that side, heat seems to help.

 

Take care,

Susan :farmer:

[Guest lwisman]

I don't want to hijack this forum, but I want to speak to the comment about anti-depressants. I was on an anti-depressant for a year (zoloft). This was before cymbalta came on the scene. Cynbalta might be worth a try to see if it also addresses one's central pain.

 

Anti-depressants are now not recommended for anyone under 25. I am wondering who is coming next: maybe those over 65? I have read a lot of nasty info about them. Like any drug there can be harmful side effects.

 

The decision to be on an anti-depressant is an individual one, and should not be made lightly. In my case it really helped me to "get over the hump." Like many I found the first year after the stroke the hardest. In some cases they are the answer, in others they aren't. Please don't take them lightly. Research, research, research.

 

 

[suzie-q]

I have been on cymbalta for over a year now. It has helped me a lot. It takes care of the pain, my depression, and the fact that I didn't really sleep much post stroke.

 

Hope it helps you!

 

susan

[centralpain101]

bob. its not usual that cps will affect the "good side". however it has been reported. usually after long periods/years of highest pain levels. its like the undamaged half of the thalamus can no longer hang in alone. and or the inflamation affecting the damaged areas is progressing over to the previously healthy parts.

 

i am so sad to hear yours is moving over to new areas. cps is always in flux. one never knows what the next hour or day will bring. i hope you have found some med combo that does give you relief. at CPSA we do keep a running meds "leads list". if i can be of any help. just ask.

hanf in you are not alone in this stroke affect.

gentle hugs

mary simpson

 

hi erin....... i totally undrstand your thinking you have tried "everything". i doubt you have as there are many things found to help some people. everyone has to try and see if its for them. at CPSA [CENTRAL PAIN SYNDROM ALLIANCE] we keep a running updated leads list ...for members...of things members have found that has helped them in some way. if i can be of any help just ask.

 

hang in there are lots to try. some are not even meds.

hugs

mary simpson

 

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[centralpain101]

kakii. what makes you think this cold reaction is not cps? it very well could be the first symptom of it. if a light cool/cold breeze makes it hurt like heck then thats cps. cps can cause spasms and intense burning or pain. cps has a great many symptoms from the usual burning to ballooning feelings, to sharp pains, to gut problems, to tongue senstations, to super sensitivity to light or sudden noise, and on and on. if you are newly stroked just be aware its a possibilty. and the faster you begin finding treatment the best bet that you can keep it in check as best you can. cps is usually a thalamus affect but is not always. any stroke along the cord is a high risk and even cortex strokes can end with cps affects. so just be aware and don't let any pain go unchecked.

hugs

mary simpson