Central Post Stroke Pain - a summary

Hopefully this may be useful for new people arriving at this site.

How many people get this pain post stroke?
Estimated and it seems to border on a guess, 3-12%.
Why a guess, often not correctly diagnosed and appears to be a number of variations.

How is it diagnosed ?
It is diagnosed by ruling out a number of other conditions. Not entirely satisfactory but it is what it is. Don’t expect a GP to do this. More likely to be a neurologist.

Please be aware that if you are diagnosed with the condition, many solutions you may encounter are more suitable for contact injuries than cpsp.
You will not know this at the outset but you may be offered massage for example. Feels good but not too much use for cpsp.

Described historically?
Thalamic pain as believed only arose from a stroke in the thalamus. Now known to be untrue.

What is a possible cause ?
That sensations from touch/movement/temperature etc have in some way been incorrectly mapped to pain receptors.

How does it start?
There doesn’t seem to be a hard and fast rule but for some people it is tingling/pins and needles.
(This section could be updated if more experiences of cpsp are shared)

How does it feel ?

  • Prickling, burning, stiffness, heaviness, numbness, electrical, twisting, pulled muscle, severe pain, intense brain fog.
  • All manner of odd sensations.
  • Unlike a contact injury, this sensation may appear to move around both during the day and across days.
  • It will vary in intensity.
  • Depending on the apparent location, there may be minor or significant impact to movement.
  • Numbness in feet or legs can have a big impact on walking.
  • Depending on location and intensity, the impact to cognitive capabilities will vary. Face pain in particular may impact significantly

The area of the distribution varies among individuals, and can range from a small area (e.g., a leg, or a hand) to large areas (e.g., hemi-body pain)

What can generate or exacerbate the sensation which is interpreted as pain?

  • Cold
  • Stress
  • Movement/exercise
  • Contact with hyper sensitive skin

What happens after the sensation has been triggered ?
You may find that the “alarm pain” your body feels continues a long time after the trigger has been removed…unless you can take action.

Are there things you can try yourself?

  • Remove yourself from pain stimulus.
  • Warmth/hydrotherapy.
  • Cover exposed skin.
  • Overlaying another sensation.
  • Lycra arm sleeves and gloves where limbs are highly susceptible to cold may help. They are also relatively cheap to buy. Possibly they may help with over sensitisation.
  • Relaxation. If you imagine someone was to pinch your arm,at times very strongly,your body rightly senses the threat and either wants to fight it or flee from the source. Either response means your body tenses up in preparation. If you can consciously, deeply relax the area causing the “pain” sensation. You may notice a sinking down feeling as your body moves from the tense state to relaxed. You may also find that a solution for your hand “pain”, that your biceps and shoulder sensations disappear at the same time.
  • Avoid use of the word pain, choose one without negative meaning.
  • Distraction/mindfulness If you can focus on something else, using an exercise bike while watching a comedy on TV for example, you might find your body ignores the sensation?
  • Pre empt negative sensation. Wear shoes on cold floor, cover arms etc

Brain training.

  • Sensation focus, concentrate on exactly what the sensation feels like and tell your brain in no uncertain terms it’s ok. Can you tone the pain down by getting your brain not to see this sensation as an immediate to threat to your safety ?

What proven medical interventions exist ?

  • Medication, both anti convulsants and anti depressants with pain relieving properties
    Note the medications prescribed have not changed in over ten years and at best may over a 20% chance of success.
  • rTMS, only available in Liverpool in the UK, requires monthly top ups. 30-40% success.
  • DBS, Deep Brain Stimulation. A hole is drilled into the brain and an electrode placed on pain receptors. A small electrical current from a battery placed under the skin is used to dampen down the pain.Stated that if suitable for surgery and successful, significant success with burning pain. NHS Funding appears to be on a case by case basis. Further details below. It is not routinely prescribed.
    https://www.england.nhs.uk/wp-content/uploads/2018/07/Deep-brain-stimulation-for-central-post-stroke-pain.pdf
    Note that a further trial is taking place in Germany using a pulsed rather than steady battery connection.
  • Targeted Ultrasound
    This is in its infancy. At the time of writing (07/24) there are 3 studies in the US and 1 in Italy. As this is non invasive, this may have benefits.
    Why might the pain increase over time?

From the NHS Walton Centre
“Although the exact cause of chronic pain is not known, there is good evidence to show that with it the nervous system undergoes many changes. Pain signals are spontaneously generated in the nerves which the brain interprets as real pain. It is as if a burglar alarm had gone off on its own without an intruder in the house. Many treatments are used to reduce these false alarm signals but they do not always work. Another curious change that happens is that the body’s ability to control pain is weakened when chronic pain sets in. Our ability to withstand pain, or distract from it, is reduced. In such a situation, a long distance runner who in a race can withstand enormous pain may find simple walking impossible because of a similar pain.”

Research

  • Living with chronic pain.
  • British Pain Society magazine March 2020.
  • Small number of scientific reviews. Few if any are UK based.
  • Be aware that it is common for depression with this condition. No known cure exists and therefore it may continue for some considerable time. Please seek help if needed.

What uncertainties exist?

  • There is very little if any information on the medium/long term implications of cpsp
  • How you will deal with long term pain. Clearly it is a challenge. Please seek help if needed.
  • To what degree it is disabling movement wise. This will vary by individual and where the sensation appears to be at any given time.

Are there differences in experience of cpsp?
Few published papers mention this but it is clear that there is significant variation in perceived pain levels. This may be due to individuals ability to withstand pain or the degree to which chronic pain has weakened the body.
It would appear that for some, the pain sensation appears at a certain level and is maintained but does not progress.
At the other extreme, pain may appear to continually progress having a significant impact on mobility and mental health.
That increase may seem relatively minor at the outset but then increase in speed. Whether the pain will plateau at some point is not known. In fact so little information exists online that it maybe individuals experience gathered across the forum is the best guide available.

Finally, Be aware

  • Numbness in particular makes you vulnerable. Accidents when cooking,gardening or using tools might easily go unnoticed. Balance may well be impacted.
  • Conscious efforts to make movements against the sensation may well mean you get tired more quickly.
  • Sleep apnea is a serious condition and is common post stroke. Whilst not related to CPSP, extreme tiredness with poor sensation is not a good combination.
  • Many Facebook posts, however well meaning, are of little help and fall into the physical solution trap. They fail to recognise it’s not a physical injury.
  • You may be treated for stiffness in a traditional way when no such stiffness/spasticity exists. It is purely a sensation.
  • That many medical professionals do not, for whatever reason, come across cpsp that often. You may find with a little research you are in an uncomfortable position of knowing more than the medical professional you are talking to.
  • Your arm, legs, face, feet etc are not actually badly sunburnt etc
  • Last point, it is a sensation, what ever you feel,this is not real pain/danger from a contact injury. The brain produces pain to warn you of a threat and for you to take action. It is difficult for your brain to accept there is no danger but this is key. It’s a mistake. You may be able to push through the sensation without any harm. Be brave but careful, don’t let your brains inability to recognise the true sensations stop you from using limbs etc. This may cause other long term issues.
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Good post :slight_smile:

Add a link from the welcome post to hear too ?

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I can’t see the pencil icon to be able to edit it ?
Is it a permissions issue ?

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It shouldn’t be…

Since it’s a wiki and you are above TL1. add your name to the list at the end as well :slight_smile:

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Maybe I just didn’t see that.
I have added to the posts but the [ brackets are not bringing up the blue font ? Any suggestions?

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Yep - a little formatting with the syntax…

You added it to Some of our best posts which is perhaps a better place :slight_smile:

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Nigel,

I think some things we experience may overlap ; you, because of rewiring problems (thalamus, incorrect mapping, CPSP, etc), and I because of a lack of wiring to the nerves (lack of feedback, poor sense of touch, proprioception low etc.). Hopefully we’ll both improve with time.

Areas in common ; peripheral neuropathy, numbness, paraesthesia (brain receiving a signal, but not able to interpret it accurately)

Look forward to sharing ideas with you, ciao, take care,
Roland

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Hi
I too experience this although my stroke was ganglial base. Acupuncture helps a little and i am using scalar energy via i Tera wand and EES sessions. GP also recommended rubbing in moisturiser and am finding a slight improvement on facial sensations at night which is having a positive impact on sleep.
Thanks for your post
Valerie

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Hi Valerie
One item I missed from the notes made was how it all started, could I ask what you noticed initially?

For me it was what felt like proper pins and needles in my face, just for a couple of hours one day. Think it was 6 or 7 hours the day after. Bit scary post stroke when the rehab staff knew so little.
I didn’t realise at the time but it was movement when eating my breakfast which triggered it. Eventually it turned into the burning sensation which has been the case pretty much ever since. The only time it disappears is late in the day when very relaxed.
I’m not sure if my experience is in any way typical.
Cheers
Nigel

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Hi Nigel
It used to happen occasionally during the first year. Manifesting as strong tingling in arm. Ca 18 month after stroke it became constant. Tingling along with numbness, sometimes scalding or cold. As I write definitely aware of some improvement lately. Been throwing everything at it…still constant though.
Blessings

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How’s the wand going, Valerie?
Any stories about using it?
I use mine every morning and evening

ciao, Roland

Hi Roland
I use it every evening for about 10 minutes, feel it could be longer. Hard to say really as i am doing so much but sense it is beneficial. The wanded water certainly is.
Blessings

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Me too, @SingingDeer

I never know how much it’s doing, until once I suspended for 3-4 days (to check if things felt any different) and yes, I felt a bit more stiff without. So i resumed

Ah I need to wand my water,
ciao, Roland

Ah yes, can imagine.
Recommend EES if you have one near. I know there are some in South east ,also Bristol. Quite amazing that there is one on my doorstep…west Cornwall. Unifyd healing site.
Warmest

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