@jay.langdon @Clguest
My stroke was in June 2023 when I was 65.
I would love to chop my stroke arm off - it feels so uncomfortable. I didn’t have a thalamic stroke but can relate to what you’re experiencing. I’ve had numbness and tingling from the start, with the tingling predominately in the stroke arm. I was able to regain considerable sensation through sensory reeducation. I don’t experience the temperature extremes - hot and cold water feel equal on both the right and left sides. But there are areas of the stroke arm/hand that are slightly more sensitive to materials such as metal which can feel a degree or 2 cooler but it’s not bothersome.
The shoulder and forearm feel tight and heavy but haven’t always been so. An X-ray showed possible impingement and range of motion hasn’t been 100% so that makes sense. The stroke hand functions pretty well and fine motor skills/dexterity are pretty good as well.
I’ve been reluctant to take medication. I tried Amitriptyline for a few months but it had no effect on the symptoms so I stopped it. I tried medical cannabis which made no difference (and I also reacted negatively to the THC ). All the symptoms I have are sensation related and although I feel very uncomfortable, I can’t say that I’m in pain which could be why I get no relief from medication.
I decided to seek out a Neuro physiotherapist privately for help. I’ve seen her 4 times so far and I’m currently feeling worse than I did in terms of increased awareness of numbness, and tingling that has now become more like a fizzing sensation. But I’m not overly concerned by this because a couple of other problems have been identified which are likely connected. The first is very tight muscles in my shoulder, forearm, back, leg and foot. These are possibly compressing nerves, aggravating the neuropathic symptoms which had previously subsided to a degree before the heaviness/tightness started in my arm and shoulder. The shoulder is feeling a little less uncomfortable since I’ve been doing some focused exercises.The second problem is a weakened hip which is affecting both my arm and leg. Once the hip is strengthened, I’m guessing I’ll stop overcompensating with the right side and my whole body will be more balanced. My therapist wants to focus on the hip - she managed to release tight hip flexors which had the immediate effect of improving blood flow to my toes which are now pink all the time instead of tinged blue when I first get up in the mornings. The therapist has said she thinks there could be a mix of both central and peripheral neuropathy going on but the tight muscles are blurring the true picture and there’s plenty of scope for improvement. So I’ve got plenty of exercises to be getting on with and have decided to join the gym with my therapist coming with me to work out an exercise programme after which I’ll be able get on with it on my own.
I don’t know if any of this is helpful or encouraging to you. I’ve had a battle going on in my mind for quite some time, trying to decide whether this is CPSP or not. My GP would probably be quite happy to say it is and then proceed to prescribe me every pill available. But for me, that isn’t acceptable. Now I know there are other problems, I want to work on fixing them and will reassess the situation at a later date.
I’d be interested in hearing about the pain aspect, as in, what does it feel like etc. I read somewhere that sometimes this kind of pain resolves itself after a few years. I really hope the doctors are proved wrong in your cases.
Trace