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Wow, no discussion on CPS. I'm curious if anyone out there experiences this? I had a stroke in 2013 which has effected my left side. In 2014 I started experiencing pain throughout my entire left side. It is an achy, pins & needles, stinging sensation. I have been on pain medicine since 2014. I really dislike taking medicine, but find I just can't do without it. Anyone know about or struggle with this?

 

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Hi Boop, lots of discussion of CPS on the site, it's actually quite common.  I don't know why a search for "CPS" returns 0 results. Try Searching for "central pain" and make sure you use the all my words option. Sorry but I don't have any personal experience of it. I have a great neuro physio who has worked hard to prevent cross wiring and pain patterns setting up.  My understanding is it can be very hard to do much about once it starts. Your best bet is probably a specialist pain clinic.

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Hi Pam you should be able to reply or even do a blog from your phone. I use the phone for Strokenet when I'm travelling, but it is quite fiddly to do and the text is very small.

I hope you're getting along OK in the current Covid mess, not easy living in a nursing home at the best of times. ((HUGS))

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Oh ..I'm glad that Pam posted for she is the first person I thought of that would be a great resource

 

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  • Founder and Owner

I have an ITB Pump permanently implanted in my side. 

 

 

No questions?  Oh well, your loss! 

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On 1/11/2021 at 4:23 PM, Boop said:

Wow, no discussion on CPS. I'm curious if anyone out there experiences this? I had a stroke in 2013 which has effected my left side. In 2014 I started experiencing pain throughout my entire left side. It is an achy, pins & needles, stinging sensation. I have been on pain medicine since 2014. I really dislike taking medicine, but find I just can't do without it. Anyone know about or struggle with this?

 

Actually Boop, as Heather mentioned above as she did a search for CPS. I was checking my Profile to see if my posts would have my reply to the Centralized Pain post I made some time ago. I was going to just copy and paste it here as it was a bit lengthy describing my neurologic pain in my left eye, and being relegated to a pain management clinic here in Miami as a last resorts. I could not locate it in my profile to paste here so I'll make a short summation of what I remember writing. When I had an aneurysm rupture, I stroked during surgery. Shortly after the surgery/stroke I started having these sharp pains in my left eye. I assumed that it may be from improper lubrication in the left eye, on my stroke affected side. My Ophthalmologist gave me tear inducing lubrications, a Restasis prescription, then on to silicone implants in the tear duct to stimulate tears as his thinking it was poor lubrication being compromised by my stroke. None of that worked and he sent me to his college professor who educated him and was now a neuro-opthalmologist at the Bask and Palmer Eye Center here in Miami. Well after several visits, tests, scans, etc he apologized and said he was sorry that he really couldn't do anything as every test and scan showed my eye as perfectly healthy. He said that in this situation it was nerve and signal damage in the brains pathways and that no surgery could be preformed to correct something that is perfectly healthy. He then relegated me to a pain management clinic at Baptist Hospital where I live in south Florida. 

 

As this lead to being prescribed round the clock doses of morphine and other opiates like the oxycontin and others. I hated taking the opiates and finally settled on an oxymorphone named Opana. In a small dose I could tolerate it but it was just basically postponing the inevitable, that the pain could not be cured, only managed. After 2yrs of round-the-clock opiate use I finally gave up and went cold turkey, as the opioids affected my whole life, people, relationships, severe constipation, for me it was just horrible and that was that. 

 

Best I can describe the pain is that it would get so painful it felt like a hot burning iron was pushing up against the inside of my eye, just miserable pain. The only was to manage the pain without the opiates I found was to take an empty plastic soda bottle and fill with water and put in into the refrigerator and when needed to distract from the intense pain I'd place it directly on the eye, of course with the eye lid closed. Or take a very hot shower and let the water pound on the eye for like 10min. Of which neither of these distraction methods were practical to use if I was outside of my home.

 

Eventually, after trying alternative medicines, herbs, acupuncture/accupressure and others, my state of Florida legalized Medical Marijuana on the state level, that was 2016. Honestly it has been a wild ride trying all the products as they became available. It wasn't until late 2019 Florida finally allowed use of smokable flower. This actually worked however, I just cannot get onboard with smoking it. So as the products evolved and the other's like oral meds improved I switched to capsules that seemed to work albeit just a bit weaker than I'd like, they were heading in the right direction. Fast forward to today and Florida has now approved edibles also, but at the same time produced a pill in capsule form of concentrated THC oil that is 50mg in strength. Now this works perfectly, completely banishing the pain however, I'm not comfortable with the "outer body experience" either, plus it inhibits walking any distance. I'm not taking this medicine to get buzzed, I just desperately need pain relief. So I'm waiting for another evolution of the cannabis products available to find a happy compromise.

 

When my eye gets extremely exacerbated by no type of relief, I just sleep or back to the shower and/or soda bottle from the refrigerator. Honestly after 13yrs post stroke I get long in the tooth with the balance, the numbness and coordination issues, but the neurologic pain is the worst, and I'm still searching for an amicable solution that would work without ugly side effects. And if not, I do have a lot of things to be thankful for and I'll live with that.

 

I hope your choices work for you, everybody's mileage will vary. What works for me may not for you. Just be mindful of the opiates should you go in that direction, they may work...and do, but beware of the side effects or if you ever need to quit using them, as the withdrawals are hellish.

 

I wish you the best and keep us all posted of your quest, both the good as well as not so good. Those experiences are valuable to all of us, and in sharing they also help us that may be on a similar path.

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Oh wow. Will2 I'm sure this will sound worse than what I mean it to; I'm very glad I don't suffer CPS.

What a huge amount of suffering. 

It's not fair, all these deficits from stroke. 

💚👑

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3 hours ago, GreenQueen said:

Oh wow. Will2 I'm sure this will sound worse than what I mean it to; I'm very glad I don't suffer CPS.

What a huge amount of suffering. 

It's not fair, all these deficits from stroke. 

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You know Janelle, in my case and with all the searching for something to manage the pain when it gets really difficult, I'm almost prompted to find some kind of solution and/or compromise that will suffice. And if or when that happens I'll certainly pass on my experience to others. Keeping in mind too is that what may work for me might otherwise give another a different outcome. I will however share, as we all should. I've picked up on so many good tips and ideas here on the site making it such a valuable resource, and it's important that all here know that. And just maybe the smallest tip or bit of encouragement can make all the difference in someones recovery. I've benefitted greatly and look forward to future directions this site and the wisdom therein take me. I'm grateful.

 

Like you Janelle and many others who may have been spared neurologic pain, you still had a stroke, and thats quite enough for anybody to handle, and what follows...May God Bless us all.

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Another route those with CPS might want to investigate is mirror pain therapy. As I said before I'm lucky and don't have it but to some extent CPS is "learned" and hence may be able to be unlearned. I'm not saying it's easy or practical in all situations but it may be worth investigation.

 

My Neoro Physio is also a pain specialist.  He said to me when I first started seeing him that even though the brain is damaged the nerves are not so they keep sending signals and the brain has to "put" them somewhere, so when you get an odd sensation as I manipulate your arm or leg, look mentally at the sensation and look physically at what I'm doing and know it's safe, this will help the brain to not connect the sensation to the pain center, and if you can't keep up or it starts to feel like pain let me know.  I still have to occasionally let him know that the arm/hand is not happy, and when that happens he adjusts what he's doing.

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  • 2 weeks later...

As my neuro ophthalmologist told me, the pain may be just in your head as there isn't any kind of physical damage that can be repaired thus relegating me to a pain management clinic for help. I've often wondered wondered about hypnosis and if it could be used to manage the pain if "it's just all in my head" and no repairable physical damage possibilities. It may work to "trick or distract" the mind into perceiving pain to a degree.

 

It didn't escape the possibilities, and I did go with my wife to a hypnosis clinic to inquire but, after we met with the representative my wife and I both felt an unease about the presentation/costs etc enough that I passed on this option. But in keeping with an open mind, I'll always be interested in this topic and may revisit it in the future. After all, it's helped many folks to curb habits that are a mental addiction as well as physically.

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  • 2 weeks later...

Will2 pain etc is definitely in my head!

Lots of little pinprick type pains, numbness, tingling. 

I'm sure my stress levels bring them on.

 

Don't think I'm keen on hypnosis. I'm too scared of what could be lurking in my hidden memories!

 

💚👑

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On 2/14/2021 at 1:55 AM, GreenQueen said:

Will2 pain etc is definitely in my head!

Lots of little pinprick type pains, numbness, tingling. 

I'm sure my stress levels bring them on.

 

Don't think I'm keen on hypnosis. I'm too scared of what could be lurking in my hidden memories!

 

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Janelle, funny that you should mention this. As one of the things my Russian wife might have been concerned with is possible access to information that may not be relevant to our purposes. By nature being Russian born and raised they are a bit more cautious in giving personal information freely by nature. And though she did not express this directly to me or the representative, I could sense it with my limited knowledge of her personality. I didn't question it at the time but respected her opinion that we should investigate other options available.

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  • 2 weeks later...

Will2 you sir, are a keeper.

That's so awesome of you to decide (correct me here if I've misunderstood) not to try hypnosis as it would more than likely upset your wife.

Not all men would be quite so understanding. 

God bless you, my dear friend 

💚👑

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  • 2 weeks later...
On 2/27/2021 at 10:23 AM, GreenQueen said:

Will2 you sir, are a keeper.

That's so awesome of you to decide (correct me here if I've misunderstood) not to try hypnosis as it would more than likely upset your wife.

Not all men would be quite so understanding. 

God bless you, my dear friend 

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Hi Janelle, sorry it's been awhile I've been preoccupied with life's roller coaster. By my comment I was referring to agreeing with her suspicions, and taking the high-road with this issue. My wife and I respect one another's opinion, whether we agree or agree to disagree. And make our decisions based on both our inputs. While we both make good and bad decisions, we just try and learn from the bad choices and move forward, very amicable and the willingness to change, if possible. Neither of us are spring chickens and both have been through a lot in our individual experiences, there's a bit of wisdom in there..

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Will2 you sound like a great match!

 

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  • 1 month later...
On 3/16/2021 at 5:03 AM, GreenQueen said:

Will2 you sound like a great match!

 

💚👑

Hi Janelle, sorry for the lag in response time, like so many others here from time to time, there will be "those days" and lately it could be best described as like swimming in mud so I've just been spending more of an inordinate amount of downtime just smooshing in my recliner and hanging with my cat. A plateau of sorts emotionally, no major ups and/or downs. And it 's not really a negative thing. At 13yrs post stroke, having them I'd guess is more common than not. A breather for me is necessary as charging the cell phone at times. 

 

I do my best my best retrospect during these few days. I look at where I'm at and where I'm going. Lately it seems that Im doing a bit of thinking about making sure that my wife will be more informed and secured should anything unexpected occur with my health. I've been down that road before and not so prepared for the unexpected and playing catch-up since is slow at times. I never expected a health crisis being healthy as a horse when the aneurysm ruptured, and a heart attack a few years ago. What prompted this of late is that my BIL also just had a heart attack and subsequently during this pandemic being owners and operators of a Travel agency here in Miami for 30yrs is now closing these doors for lack of business, I've had a few conversations with my sister about the difficult decisions and moving their business to home. So, of course that had me thinking about those "what-ifs" should any of those bumps in the road come in my direction. I want to be more secure in knowing that my wife might be a bit more confident making decisions. She has always been out of the picture with a lot of the boring mortgage details, insurances, policies etc. And both of us staying on track and stable with me at the wheel. I know she can and will adapt to major changes, and it's part of my charge to bring her up to date from time to time. 

 

Honestly, we both see a bit further down the road as not to be a bit overwhelmed should unexpectedly occur. And not to be funny, or an oddball, I think about my cat as well, or if he'd ever think about where I am, or where I went. Lately his routine thing has been climbing on to my chest and laying cradled in my arms just purring away. It makes me jump at times when I'm dozing in the recliner and he so just walks from the bed onto my chest for his recharging. I had read recently about the frequencies that cats purr at and why they may purr. My thinking is that he's getting involved in my recovery and the purring has a healthy rehabilitative energies and helps restore my over all health. Nonetheless, real or imagined, it lifts me a bit so I welcome the exchange. :rolleyes:

 

I'd guess what I'm driving at without all the dribble is that it's more about being better prepared for any upcoming unexpected bumps and less about the drama for both of us should they occur. She's tough, and very resourceful but we both know she needs to be updated on all the boring details. But both of them have me a bit more preoccupied about the "what-ifs" as best as possible, I think it's natural in most families in the golden years to be as prepared as possible. I actually never gave much thought about those things, having a job and career of 25yrs and looking forwards to a well oiled as possible retirement. Though I'd be foolish to think I'm preaching to the choir here as the more capable fill in the gaps and gave more considerations to planning, financially and emotionally than I. At 69 soon, I'm still learning the curve!

 

Too, I'm no angel, but still a work in progress..

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We are all a work in progress right up to the end, no matter how unexpected or expected that end. But there is no harm in being prepared. If you don't find time to talk to your other half at least make a file of notes for her with all the relevant details like account and policy numbers and let her know where to find it.

 

Fingers crossed she doesn't need it for a long time yet.

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On 4/19/2021 at 4:04 AM, heathber said:

We are all a work in progress right up to the end, no matter how unexpected or expected that end. But there is no harm in being prepared. If you don't find time to talk to your other half at least make a file of notes for her with all the relevant details like account and policy numbers and let her know where to find it.

 

Fingers crossed she doesn't need it for a long time yet.

Hi heathber, well said and thank you. Like minds think the same..In the last few years I've done just that, I wrote down all policy info, phone numbers and contact info and locations of policy declaration pages etc. Lately I've been helping her establish relationships with our maintenance people and programs. This week she was introduced to our landscaping crew and worked with them trimming the front yard tree jungle in preparation of hurricane season which starts in June. She did splendidly too! Today, I've been working to get her updated with insurances i.e. home/auto policies. It's beneficial especially since it's mainly just the two of us.

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