How to manage thalamic pain syndrome?

Posted by wildeharpe @wildeharpe, Jun 26, 2024

I have a thalamic stroke a year ago. I experience pain, stiffness and pressure on my left side from trunk, to upper left leg and down my left arm. My elbow burns and my balance is off. I walk with a limp due to the sensation of rigidity. Does anyone else have similar symptoms?

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Profile picture for BeBold @bebold

I have Complex Regional Pain Syndrome (CRPS). There I lots of info and several co-sufferers here. What interesting is its very clear everywhere you read, that crps can result from a stroke. And your symptoms of extreme burning, discoloration, etc are the same as CRPS I've never heard of "Thalamic Pain Syndrome." I wonder is it is really the same thing just renamed to make these cases related to stroke more real. CRPS is a still little known ad under diagnosed. Having it an officially connected might be fewer drs will say its all in your head. Do some research here and elsewhere on CRPS.

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@bebold Hi, Ai has an explanation to show that they are very different items. I'm sorry to say that your post isn't really that helpful given it's factually incorrect.

Complex Regional Pain Syndrome (CRPS) and Central Post-Stroke Pain (CPSP) are both debilitating chronic pain conditions, but they have entirely different origins, mechanisms, and diagnostic criteria. While CRPS typically stems from peripheral trauma or immobilization and is characterized by severe autonomic and inflammatory limb changes, CPSP is a central neuropathic pain disorder caused directly by a stroke lesion inside the central nervous system.
Notably, a stroke can sometimes trigger post-stroke CRPS (historically called shoulder-hand syndrome) in a weak limb, but this is a separate secondary complication from CPSP

Thalamic Pain Syndrome is a slightly outdated term when it was believed that only strokes in the Thalamus led to this pain developing. However it is now known this isn't the case.
The thalamus is the hub where 6 of our 7 main senses pass through prior to being passed on to other areas of the brain for interpretation.

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This is just for info. I see the term Thalamic pain used quite a lot in the US. Elsewhere it has been changed to Central Post Stroke Pain to reflect that CPSP can arise from strokes in other areas.

It did make me wonder a little, if the stroke occurs in other areas will it be correctly diagnosed ?

This is from the faculty of pain medicine.

"Central post stroke pain is a common pain syndrome after stroke, estimated to occur in over one-third of cases of post-stroke pain. Most commonly, it develops within 3 to 6 months of stroke although it may occur sooner. Symptom onset is often gradual, usually associated with improved subjective sensory loss and the appearance of dysaesthesia. The pain is quite severe and constant. CPSP is commoner in younger stroke victims who are reported to be twice as likely to develop this horrid pain. Most patients report a constant pain with superimposed lancinating pain as well as hyperalgesia and allodynia on examination. Patients who have sustained a thalamic stroke are more likely to develop CPSP. Dejerine-Roussy Syndrome occurs in around one third of cases of Central post stroke pain and is associated with thalamic strokes.

However central post stroke pain can also occur with strokes affecting the spinothalamic tracts, and brain stem as well as the cortex. Strokes affecting the right hemisphere are more commonly associated with pain. "

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Profile picture for wade nasholds @wnasholds

Hi I have had CPSP since my ischemic stroke in Feb 2022. I finally got a neurologist last Dec. 2025 who had treated CPSP patients in North Carolina a part of her residency au the University of NC. She treated them with gabapentin.
She put me on 200 mg 3x daily to start then up to 300 mg3x daily. I felt some relief but not completely. She left the practice unexpectedly back at end of May 2026. Left me hanging I feel. The neurology practice was supposed to set meup with another neurologist in the practice but did not. They are having difficulty hiring another neurologist.
I.took it upin myself to do resesrch and found that I could go up to 500 3x d. Consulting with my primary doc she said it was ok to do. So I started 500 3x d a few weeks ago and have found a little more relief. it does make me sleepy during day, but that is ok. I nap
Any one out there found good relief with gabapentin?

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Thalamic pain can be really difficult to manage, and what works for one person may not work for another. It might help to keep a simple pain diary to track triggers, sleep, and which treatments provide relief, then discuss the patterns with a neurologist or pain specialist. Connecting with others who understand this condition can also be helpful.

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