Hi Graeme @Graeme01 ,
I too suffer with a hell of a lot of nerve pain and associated muscle contractions (I’m 10 months post stroke yesterday) , your stroke wasn’t a bleed close to the thalamus by any chance?.
The reason that I ask is that such strokes put you at a higher risk of developing Centralised Post Stroke Pain (CPSP), which used to be called Thalamic Pain.
There are a number of threads that relate peoples’ experiences with pain and its management, for example to one that Simon @SimonInEdinburgh posted linked to above, that are worth a read if you want to see what has worked for some of us. in that thread you’ll spot that Gabapentin did absolutely nothing for me so I’m now on max dose of Pregabalin, which I note didn’t suit you, that at least allows me to sleep whereas in the same thread you’ll spot that others are on a mix of Gabapentin and Amitryptaline that seems to help them (I tried a very low dose of Amitryptaline and couldn’t tolerate it as it just knocked me out).
You’ll not get any definative answer or magic bullet to help you with your pain unfortunately as each of our strokes and associated “gifts” are so individual but what I hope you will gwt is an idea of what you could be asking the doc to prescribe you to try.
I’d suggest searching the forum for “CPSP” if your stroke was indeed a bleed anywhere in the midbrain (i.e. an intercerebral hemorrhage, rather than subarachnoid hemorrhage or an ischemic stroke) and especially if the Thalamus was affected.
As for pain when exercising, the following link may be of interest to you
HI RIch,
Thanks for your answer. Tbh i have no idea about my actual bleed that caused my stroke. Since i live in Spain the information i get from medical staff is pretty much non existent. I am fast coming to the understanding that there is no silver bullet. What i would love to know is whether the pain deminishes after time. I’m hoping there is someone out there that can answer that question.
In any event, thanks again.
Regards
Graeme
Hi Graeme @Graeme01 ,
If post stroke the main issue that you’ve had is to do with loss of sensation (external such as touch/temp/taste etc, and/or internal i.e. ability to know when your limbs are without looking - called proprioception) the it’s likely that the thalamus was involved.
My theory regarding the pain that I am experiencing is that the stroke took away all of the pathways that I had previously spent years developing regarding sensations/pain/proprioception. I know that the new pathways are being established (they must be because I had absolutely diddly squat a few hours after the bleed) but as these new pathways don’t come with any experience then the brain is just playing it safe and trying to protect me by routing all of the signals (be they driven by external factors such as touch/temperature or internal proprioception signals) to the pain centre.
To that end I really don’t want to get rid of all of the pain (it is the only real sensation that I’ve got so without it I wouldn’t, for example, know when my foot is on the ground and if so am I standing) as without it I would be back to where I was on day 1 and wouldn’t be able to walk etc.
What I have noticed over the past couple of months is that in some areas there appears to be some true sensations emerging (although still very very muted and overlaid with the pain sensations) and in these areas the pain has lessened very slightly.
Is the pain holding me back from exercising?
No I won’t let it and I continue to really push myself every day (except Sunday when I ease off a bit) which hurts a lot but slightly less than when I started so I see that as affermation that what I am doing is working (at least for me).
Well done ; you keep at it. I’m having a good day today.
Remember pain runs along the same pathways as normal sensation…
it’s literally the outer conduit vs inner conduit ; in time the sensation will refine
I am making steady progress with sensation 10 months on from my stroke. ( same as you ) For instance ; using my vibration board, I can now feel an inner tickle in my hand which felt nothing 2-3 weeks ago.
My leg is fighting for survival ; the muscles undergo a 3 day cycle of tightening / loosening. It could be that this cycle takes place regardless of what I do, but my Chinese Dr. believes it is a direct consequence of how much I push it with exercises etc. The one thing I have had success with is completely reverse withering, and flesh out, and even build those stroke muscles ; though there are weaknesses in my arm and leg. I gained 0.5 kg in weight ; first time I go up in weight after my stroke.
My stroke arm / hand has got to the stage where I can play my vinyl records / put them on and take them off without wrecking them… it has taken me 10 months to get to this stage. In a week or two I will try my violin for the first time in 10 months.
I remain very diligent and careful in noting every detail about my leg. Extreme care with exercise dosage, and I have a good feeling about the iTeracare wand ; it eliminates the pain that I get at the end of the day. A remarkable machine I recommend it to stroke warriors who are actively working their muscles.
Good luck to all ; enjoy the recovery
Ciao, Roland
Hi Greame, Thanks for your response - from your responses it looks like that there is an element of muscle stiffness related pain, painkillers would only mask pain but would not remove the cause. I am not allowed to make any treatment suggestions, hence, I am limited in what I can suggest - but there are ways around it to reduce pain through hands on techniques.
Hi Rich,
I think my bleed must have been very similar. At first i couldn’t stand as i would easily lose my balance. On occasions my left hand st night, would whack me on the head as i didn’t know where it was. Since then I’ve had extensive training by a trainer who has an excellent understanding of the after effects of a stroke. To date i walk the dogs in the mornings, i can drive safely. I can ride my bike albeit an electric version. Today she tested my sense of feel of my fingers of my left hand. I have done this before and could not tell which finger she was touching. Today for the first time i actually felt her touch my fingers in a blind test. To say i’m over the moon is an understatement. So i’m in your school of thought. Keep the exercise going. Even through the pain.
Regards
Graeme
Hi Mrs5k,
I actually got quite emotional. We’ve done this test several times in the past with absolutely nothing,this time i could feel her rubbing my fingers. We have been working on my hand along with training execises, so i’m over the moon. My next goal is to get back on the padel court as i used to play 3 times a week.
Thank you for taking the time to talk to me.
Regards
Graeme
I am so delighted by your progress! I am happy you were emotional about it as well. Experiencing emotions is a wonderful thing, especially tears of joy and elation! I have spent too many apathetic days not to be grateful for the emotions. Some of them bother me (anger, jealousy…) but they are just telling me something needs to change. Happy you have a knowledgeable therapist! Keep up the good work! And definitely keep us up to date!