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MikeLaMarr

CPS???

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hi, just joined, so still checking things out. The title CPS caught my eye so here I am. I've never been diagnosed with CPS (only with peripheral neuropathy) but it seems to generally match up with what I'm dealing with. I had my stroke a little over a year ago, and while I get around pretty well, my whole left side (from ear to toes) is in a constant state of numbness/pain. I can't even describe if my side feels hot or really cold since the best way I can explain it is a cold, numbing heat (if that makes any sense). The pain is worst in my hand and lower leg/foot. With the greater pain in my foot, I can walk, but the sensitivity in my foot means constant pain, and walking in bare feet is next to impossible. I can grasp things in my left hand (unless I'm having a bad pain day) but if its breakable I have a good chance of either breaking it or dropping it since I can'y feel what I'm grasping. I can only type with my right hand because of finger sensitivity in my left.  I'm taking Lyrica which helps to a certain degree but am looking for suggestions on what might help better. I've tried Osteopathic manipulative medicine (didn't help at all), and clinical massages (which help for a day or two). Anyone have suggestions on what may help more?  Not looking for complete absence of pain, just looking to ease symptoms.

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Mike, Did you see the response I just made to your initial post? I'm afraid that you might be on the correct track here. I could have written this post for myself, except that I have gone back to gabapentin (Neurontin) after a trial with Lyrica which found it to be less effective and very much more expensive. Plus for me it caused excessive weight gain. I also take amitriptyline (Elavil) which I have used for years to reduce the frequency of migraines; I am told that it can also help with neuropathic pain. I guess it is all pretty much trial and error for everyone. Sadly, there is no silver bullet.

 

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I've also tried Neurontin which didn't seem to work as well. I have Medicaid so the Lyrica is completely covered. I know what you mean about the silver bullet. I'm definitely not expecting a cure-all but it would be nice if there was some med (or any other kind of treatment) that could provide at least a little bit more help

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http://www.michiganspineandpain.com/ hey I googled somethings and the first city and the last are a little over an hour. Have you looked into this guy? I found him through this https://centralpainsyndromefoundation.com/   I'm sure you've been down this path before but I still wanted to share

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Actually I've only tried massage and an osteopath so the pages you posted are new to me. I will definitely explore more. Yhanks

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You really need a neurologist to diagnose Post Stroke Central Pain as most doctors know essentially nothing about it, even some neurologists. I'm on my third neurologist and he really gets it and acknowledges how disabling the pain can be. Having a formal diagnosis from a neuro does help to smooth some of the bumps other doctors erect. I'm again in the trial and error search for a medication that works but there is no silver bullet, only reduction in intensity. You will find several on this board who have this and they will be there.

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I hear that about drs. While I really like my primary care dr., in regards to stroke issues, she's prescribed me the Lyrica and beyond that says there's nothing that can be done. She's suggested a few things like ice or heat packs (both are excruciating), and some kind of supplement/ herbal product called MSM (haven't tried yet).

 

The thing is, I seem to a problem with minimizing things related to the stroke because I don't want to admit it affects me as much as it does. So I paint a picture of it not being as bad or affecting me as much as it really does at times. Just like how it's taken me over a year to sign up on this forum even though my dr. has been suggesting it the entire time since the stroke. Not exactly sure why I'm like this but there you go

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I have that tingling sensation on my left foot , if I curl my toes it feels like pins are poking me and makes my foot jump around like its being tickled and yes it does kinda feel like a mild sunburn. this kinda scares me :terrified: 

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On 9/28/2017 at 1:47 PM, scottm said:

You really need a neurologist to diagnose Post Stroke Central Pain as most doctors know essentially nothing about it, even some neurologists.

Some hospitals have doctors that specialize in Pain Management.  Most big hospitals have pain management clinics.  You have to call hospitals to find out. 

 

32 minutes ago, edkel1 said:

I have that tingling sensation on my left foot , if I curl my toes it feels like pins are poking me and makes my foot jump around like its being tickled and yes it does kinda feel like a mild sunburn.

Unfortunately, these are classic CPS symptoms. 

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with me the sensation is so bad I have to wear a size 12 shoe when I normally wear an 11. Even then it feels like my foot doesn't fit. 

plus, all I can wear are slip-on shoes

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Steve

I sure hope your wrong, It was not that bad 6 months ago ??????? any idea, I can do most anything other than run and ladders that take time,

Any other ideas

Ed

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15 hours ago, edkel1 said:

I sure hope your wrong, It was not that bad 6 months ago

I hope I'm wrong, too!  When my CPS started, over 20 years ago, I described my pain as tingling with a sunburn and cold sensation in both legs.  It start hurting 3 years after my stroke.  The pain grew in intensity with time.  Check our http://www.centralpainsyndrome.net/.  You need to especially read the part about getting treatment and finding the right kind of doctor. 

 

I don't want to scare you but I'm concerned and want you to understand what might be happening. 

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Wow, I'm pretty amazed so far at how the little I've read so far on CPS seems to match my symptoms to a T. I know that just because I've read a small bit about it doesn't make me an expert, and that I do in fact suffer from it, it does mean that it's worth exploring further with my drs. Yhanks for the suggestion, I will be following up on it

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Yes funny thing about stroke is an uncanny denial that  we exerience and minimizing truths about changes we go through. But for me, the pain grew to intolerable quickly and I have a severe case of CPS by any other name. I get RFA radiofrequency ablation treatment at a major big teaching hospital in so cal. It helps for a few months and must be repeated and I still pray it resets the nerve bundles so the sensitivity and burning icy hot will subside.

 

I take big doses of pain killers from my pain management team otherwise I lay in bed writhing screaming like something that should be put out of its misery. So I am miracle that goes to beauty salon, visits with friends, enjoys movies, and is an artist now i am not working in schools now. I cannot live without assistance so I am in a snf. Right before treatment I hurt badly.  They put it to every 4 mo instead of every 6 mo.

 

There is no shame. Get help. Suffering is silly when there is help. Docs who do not know how will say nothing can be done. I was in hospital and the average doc gives average meds which did not help, but then pain team got there....relief. I stopped screaming help me. 

 

so if you are not like me then there are pills patches physical therapy, and the spinals, and prepare for trial and error to find what is effective for you personally. Find your key to unlock the pain grip. But talk to docs, lots of them, yes sounding nuts to those that do not understand the pain language

 

There is the pump too. Ask Steve. There is hope. Try and believe some relief will happen. 

 

After my treatment I go do fun with family while it lasts. I struggle but then I am normal for a while. My right leg is problem. My right arm is icyhot as if I took them out of freezer but not the stabbing aching burning alive leg.

 

You are not alone and I agree, who wants to be on this site? but you will find others who got it so get it. And you will learn and be loved. This is comfort and acceptance here even when others tire of hearing you complain, there is listening and lovely understanding here. Welcome.

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in the last few days since coming to this website I've already found a pain management clinic here in Lansing and have filled out their online request for help form. If I don't hear from them in few days, I will call. Especially with winter coming I know the pain is going to increase and hopefully I can find some help

 

It's also a relief to know that CPS is an actual treatable thing and not just something I'm just gonna have to learn to live with which is what I've been doing the last year with little/no success. I'm not thinking I'm going to find some magic cure-all. Just something to help me manage better. For me, it's bad enough living on SSDI, I at least need to be able to get out and do things to have some meaning

 

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9I am glad for you. Yes, I agree ot is important to be able to go out, be comfortabe, live like you mean it. Pain gets in the way.

 

And it is not about pain, tolerance....not like a contest, to see how much can I endure  

This is a real pain, a powerful thingy that changes me, sometimes vulnerable or<angry.  So I encourage you not to despair or give up. 

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Funny how even when the pain almost reaches the unbearable point (like it is right now), it almost feels like the worst part of it is putting on a happy face and saying "I'll survive" when people ask if your'e OK

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oh yes but worse is when they believe it, clueless,no idea:pounding-headache:

 

I do not do brave when it wracks my body mind soul and envy the downed horse, when others see my crying screaming help and they walk away off t some happy life. I get sick of explaining why I take two kinds of opiates plus lyrica and I still hurt. I was told I must get spinal fr relief. I was scared, it hurts, my doc will only do it if I get iv drugs to relax me, ease pain so I do not move around. I bucked he said. There is that horse term again. I must do #4 now.

 

So no shame. This is horrific. I went thru 2 childbirths.....I know I can take pain. So when they actually say I am too sensitive, no tolerance to pain or anxious....ok pain makes me frantic..do not think it is panic.....I am experiencing a feeling like my leg is being amputated but I never pass out.

 

I think it is more strength demanding someone see me, see this, and shame on them for no compassion in reality away from popular sympathy stuff.

 

You owe yourself relief. Do not be ashamed. It is on them if they cannot be truth.

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I'm going thru the motions now to get my primary care doc to refer me to pain management clinic. Opiates aren't out of the question, but I'll try all other options first

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A slightly more out of the box suggestion that you might like to try is mirror therapy. Thankfully I haven't had/got CPS, but my Neuro physio is also a pain specialist and he mentioned to me that mirror therapy can help if it does develop. It's a bit like phantom limb pain, the brain has linked the "lost nerves" signals to pain responses instead of rewiring correctly, so mirror therapy can be used to help reset those connections properly. it's not a quick fix and you need a specialist to train you how to do it, but if you don't want to go the opiate route it's worth some research.

-Heather

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My dr. sent out a referral for the pain management clinic at the local hospital here in Lansing. hopefully they'll get back to me soon because this cooler weather we're having seems to be making the burning sensation a lot worse. Last weekend the only time I got out of bed was for church on Sunday. It was nice to catch up on sleep but I don't want to start making a habit of that. With the pain the way it is though, I can make it thru the week, but by the weekend I'm just mentally spent from all the grinning and bearing it

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On 9/28/2017 at 10:44 AM, MikeLaMarr said:

hi, just joined, so still checking things out. The title CPS caught my eye so here I am. I've never been diagnosed with CPS (only with peripheral neuropathy) but it seems to generally match up with what I'm dealing with. I had my stroke a little over a year ago, and while I get around pretty well, my whole left side (from ear to toes) is in a constant state of numbness/pain. I can't even describe if my side feels hot or really cold since the best way I can explain it is a cold, numbing heat (if that makes any sense). The pain is worst in my hand and lower leg/foot. With the greater pain in my foot, I can walk, but the sensitivity in my foot means constant pain, and walking in bare feet is next to impossible. I can grasp things in my left hand (unless I'm having a bad pain day) but if its breakable I have a good chance of either breaking it or dropping it since I can'y feel what I'm grasping. I can only type with my right hand because of finger sensitivity in my left.  I'm taking Lyrica which helps to a certain degree but am looking for suggestions on what might help better. I've tried Osteopathic manipulative medicine (didn't help at all), and clinical massages (which help for a day or two). Anyone have suggestions on what may help more?  Not looking for complete absence of pain, just looking to ease symptoms.

Until I find a realistic answer, I sip brandy all day...Although it doesn't rid one of pain; it sure helps making one feel better about having to live in it. Cannabis was effective but sadly,I developed a horrific allergy to smoking weed so unless I can procure it in an ingest able form-that's out. Besides waiting for the experts, believe it or not-I've heard that a concentrated extract of wild lettuce has been used for centuries for the treatment of chronic pain! Haven't tried it myself so I can't testify to the effectiveness of this claim-but you can bet that I will;}

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Mike dealing with pain is exhausting. Sleep is good.

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For this type of pain which many of us have, the typical first line treatment is tricyclic antidepressants. Those didn't work for me nor did another antiseziure medication but ultimately the doctor did a trial with Cymbalta and that worked for me. It is a time consuming trial and error process to find the drug or combination that adjusts the brain chemistry to minimize the pain signals. Normal pain killers don't have much if any effect in most cases.

 

As Betsy said, rest is good. Avoid stress both physical and mental and avoid temperature swings, especially cold. Make sure any neuro or PM is familiar with post stroke central pain. A lot are not.

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