Anyone have central post stroke pain syndrome? Your treatment?

Is there anyone out there who can share their medical treatment experience with Central Post Stroke Pain Syndrome ?

I suffered a basal ganglia hemorrhagic stroke in 2020. Symptom onset came on suddenly in the past 6-8 months.

@blueflower1 - I moved your post to this existing discussion of Central Post Stroke Pain Syndrome so you can chat with others here:

- Central post stroke pain syndrome https://connect.mayoclinic.org/discussion/central-post-stroke-pain-syndrome/

If you are replying by email, click on VIEW & REPLY so that you will be brought to the discussion. I suggest reading previous posts and posting yourself, as you feel comfortable.

What symptoms bothering you the most today, blueflower1?

Hi.

I had a brainstem stroke over 2 years ago.

I had pain in my right side, mainly below the waist, when undergoing physiotherapy in hospital but developed more general Central Post Stroke Pain about 8 months after stroke.

Symptoms include cold right foot, sensory issues in that leg including partial numbness, needles and pins and aches that sometimes gets more moderate to severe especially when stressing it. I have structural issues in that knee and there seems to be synergistic pain in the knee from stroke pain and structural pain. It's quite limiting.

I tried anticonvulsives for about a month but didn't have any effect and significicant side effects. My GP wants to try Cymbalta now, but I am hesitating. I've contemplated scalp acupuncture but am hesitating on that.

The trend in time is that it is either getting worse or remaing the same, it varies from day to day in severity too.

I purchased new sneakers this week and that has helped somewhat.

Eric

The only genuinely useful items I can suggest to help ease the pain are
- staying warm. Wear a glove on your affected side, might look odd at times but it's worth it.
- intelligent use (not non use) of your impacted side. If you use your stroke hand to get items out of the freezer or fridge, you are asking for trouble. Have slippers next to the bed to avoid directly touching the floor.
- sign up for hydrotherapy. It might be tough some days but exercising hard in warm water seems to reduce the pain in the exercise period and for 2 or 3 hours after.
- search for the Stroke Improvement Group. Lots of CPSP articles and posts on there. Please join in. Multi country community zoom calls recently started to just chat about the condition, tips, people in research pilots sharing progress.
- try not to let yourself be treated for a "physical" condition.
- it does seem, that unlike times in the past, there is a lot of experimental research taking place across a number of countries.
- its possible that some of the pain is linked to undiagnosed spasticity, known as dynamic hypertonia. Unlike traditional spasticity in a single body location, this milder but painful form of the condition moves around and may be driven by the same triggers that drive CPSP. Trigger - Spasticity reaction - CPSP.
Or
Trigger - CPSP - Spasticity Reaction - Greater levels of CPSP.
Not many Physios know of this and may even rule out spasticity as it "moves around".

Hope this helps, Best of luck.

@ericn4600 Hi, I find new footwear helped as well, lighter the better and ideally with the toe upturned.
I found acupuncture of no use for pain but incredibly relaxing. So much so that despite having needles from head to toe, I fell asleep.

Hydrotherapy I would recommend, if you can exercise in the pool to really up your core body temperature, it seems to give some relief for 2 or 3 hours after. Especially if you can maintain that core temperature with a heated blanket, wrapped up warm.

Mindfulness helps for sure. Mirror therapy is perhaps a form of this, no use for long term pain but engrossing short term.

Sunshine on a still day is also very helpful.

Best of luck