Recommended Posts

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?

 

Link to post
Share on other sites

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.

Link to post
Share on other sites

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))

Link to post
Share on other sites
Quote

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

 

Link to post
Share on other sites
  • Founder and Owner

I have an ITB Pump permanently implanted in my side. 

 

 

No questions?  Oh well, your loss! 

Link to post
Share on other sites
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.

Link to post
Share on other sites

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. 

💚👑

Link to post
Share on other sites
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. 

💚👑

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.

Link to post
Share on other sites

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.

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.