Central pain syndrome

Thanks for “hug”, Matthew
I’ll keep researching

All I can say is, I too had a stroke in 2018 and have been tormented with pain ever since, through my whole body. It's like the stroke broke some regulating pain meter; now all pain is intense, all the time.

It has lessened over the years, but it still makes me question the value of life.

Lately, though, knowing that it's an actual syndrome is helping me cope. I'm trying some self-hypnosis types of actions to modulate the pain. Seems to be helping, at least so far.

Sorry to hear that, Scott

Central pain syndrome should only affect side of the body opposite side of brain where the stroke occurred. Feel terrible for you. One side is bad enough

Several weeks after a stroke I was diagnosed with central pain syndrome
Entire left side of my body feels constant stinging, burning pain, often accompanied by cold sensation
Running out of options for treatment
Neurologist, pain management Dr, physiatrist all have persisted in searching for way to help, to no avail
Currently waiting to hear from Dr who is reviewing my records Stroke was in 2018
Also being treated for osteoporosis
Hanging in there, but so frustrated
Have polycythemia vera too.. which doesn’t cause pain, thank God
Thanks for any suggestions

Hi, @irishnanny3 - I'm really sorry to hear you are running out of options for treatment of the central pain syndrome that was diagnosed several weeks after your stroke. It's good to hear that your neurologist, pain management doctor and physiatrist all have persisted in searching for ways to help.

Which of your doctors are currently reviewing your records, irishnanny3? What is this doctor looking for in his or her review?

Hi Lisa
Thank you for your concern
My physiatrist at Kessler
recommended a pain management Dr whose name he was given by a colleague at Sloan. The
Dr reviewed the records my Dr sent and I was just given an appointment for August
My physiatrist said that this Dr has treatments that aren’t available to him
He feels it’s worth at least a consultation. I’m cautiously
hopeful

hello,

after all has failed the doc tried off label DBS implant.
He is now trying off label RNS implant.
Let me know if you want to further message about this. you are not alone. its been 3 years since my ischemic stroke and my right side burns and is being electric-shocked 24/7.
pain never gets lower than 9 and gets over 10 most days.

Hubby had first stroke May of 2025 then second one January 2026. Left side affected. Diagnosed with this pain syndrome. Frustrated with lack of progress from treatment. Have tried first and second line of medications normally recommended for this with little effect. As described above he has chronic intense sharp pain all along his left arm - says most days pain is over 10/10 - burning feeling at times, cold at times, sharp electric type shocks along with the constant pain. Seeing every specialist there is for this. Sugars and blood pressure being managed. Still seeing OT, PT and social work. Will try a multi-disciplinary team approach program for chronic pain at our local university. Following this thread and eager to hear other options.

Been dealing with post stroke central pain syndrome for 8 years this coming June. Your husband’s description is accurate. Mine is entire left side of my body from head to toe
Neurologist has tried every drug, including anti epileptics, anti depressants, things as strong as methadone, fentanyl’s acupuncture, ot, pt, mirror therapy. Now also see physiatrist, who tried more drugs, referred me to another specialist and recently suggested ketamine infusions, which I’m reluctant to try
I hope you find something that will work for your husband

@koala78 Try seeing a neurologist. Sounds very similar to what I am living through but I don’t want to scare you off or try to diagnose you but see a neurologist asap.