Nigeloglos and @Trace57 I suffer with Allodynia, it was especially bad immediately after my stroke but has certainly become less of an issue over time - getting dressed is still a bit uncomfortable and i don’t feel the same sensations on my affected side anymore, for e.g stroking the cat - i know its soft but cant feel the fur if that makes sense.
My pain sounds different to yours. Mine’s nerve pain and affects all of the area affected by my stroke, so the whole of my left side from the top of my head, face, neck, shoulder, arm, torso, hip, leg, foot. Its freezing cold, burning, aching, throbbing, stabbing, spikey, shooting, or a combination and varies from one part of my left to another. I always have earache, headache and painful sharp freezing cold hand, the rest varies.
I’m on pregabalin 600mg at the moment and use codiene with that as i need it, it makes the pain more manageable. I’ve tried amitriptyline, duloxetine, gabaprntin, tramadol - that was good, but GP took me off when i asked for more :(.
*DON’T just stop taking your meds - speak to your GP and do it gradually, see how it goes, you can always ask GP to prescribe something else if the meds youre on dont suit you.
Consultants and specialist don’t tend to keep seeing you, that’s the role of a GP - who can then refer you back to the others if needed. If you think you need it, then ask. To be fair to GPs we tend to expect them to know everything about everything, but sometimes they need us to be clearer about what we need or think we need. 
@Nigelglos and @RuOxley
I’ve looked into allodynia but I can’t honestly describe what happens as pain. It’s an uncomfortable and irritating sensation. Obviously, I have to cover up when I go out and I’m far less aware of it than I would be if I was sitting at home and not doing much.
It started a couple of months ago when I noticed a prickly sensation starting in my numb leg and buttock. But the sensation is more irritating on the stroke arm which is now constantly full of pins and needles that vary in intensity. Sometimes, by the evening, it’s toned down to a mild to moderate tingling.
I’ve been numb down most of the left side since the stroke but regained a lot of sensation back in the stroke arm and hand through sensory reeducation. However, the pins and needles in the hand can be intense enough to override the sensation at times but I’m still able to use the hand almost as well as I could pre stroke.
I also have numbness and now tingling in the neck, lips, cheek and eye. It’s this that stops me from driving because it just doesn’t feel right ( none of it does for any of us, does it). I’m hoping that eventually, I’ll become less aware of it. I don’t think it’s going to go away.
At the moment, I’ve got a cold so everything feels exaggerated.
I don’t get any of the pain that either of you have described. I’m so sorry you have to deal with that, especially as treatment to alleviate seems to be so hit and miss.
How is it going? It was nice to ‘see’ you again!
I hope the Duloxitine is helping. I am very happy with my 60 mg. My Neurologist wanted me to go to 90, but I didn’t follow directions. He saw me on a bad day after a load of good ones. My anxiety was up in direct relationship with the anxiety he causes in me, and others. As in he is super bright, to the point of brilliant, not very patient, and scared both the cardiologist and ICU doctor to the point at my last hospitalization, even in Cardio Critical Unit, he took over my care from them. He didn’t ask, he just did it. So a bit intimidating. I cried and he assumed I needed more. I knew it was circumstantial and that I didn’t need more.
I so hope it is working as well or better for you than it is for me, and hope to run across you again. Message if you like.
My mother’s doctor caused me a lot of anxiety.
If doctors have the way, it might be best to switch doctors. But I understand fully that sometimes you just cannot do so.
Take good care.
Thankfully, although he can be very anxiety provoking, he is also very thorough and has been great at getting me the help I need. But I do agree with you, if there is a problem, change to a better fit if you are able.
I suffer from severe stiff ess and pain like someone is pulling my arm out but I do try this…I say to myself every time I get out of the car, I will not feel these feelings, I am ok, etc. Unfortunately the damage to my thalamus rears it’s ugly head and all the sensations just come right back but I do try
Hi I’m on 1200 mg a day and live with a constant pain in my left foot made worse through an Afo and closed boot plus the weight of walking or standing on it. Sometimes I get a period of no pain but it is not known why or what gives relief although powering through the pain and getting out of the boot as soon as is possible in the day.
My yawning makes the left arm rise and the foot hurts more
Sadly living with the pain for over 2 years
Good luck,
Mark
Hi Nigel I’m on a dose of two 300mg three times a day but I have withdrawn the mid day dose as to be honest the pain relief is still hit and miss and more often than not still present.
Some medication times it works and my pain is low and sometimes not so I suck it up in order to keep walking.
You may have a point although my wife massaging the foot every night might be a coincidence as my neuro physio used this method to re-baseline the sensory cortex knowledge of the sensitivity in the foot
@Nigelglos i think there is a lot in what you say here . Focussing on things too much can make them seem worse. I guess it’s a similar theory to CBT where they get you to focus on the pisitove side of things & not the negative. Glass half full glass half empty scenario.
Be interested to hear how you get on.
Do any of you believe that Gabapentin could be worsening your pain somehow? Just throwing that out there. I have relative (never had strokes) who claim it doesn’t really do anything – they’re simply addicted to it.
Hi Matthew. I’ve not been on here for a while. I still suffer from CPSP. I’m currently on 550mg pregabalin and 50mg of amytrypytoline.
I tried different levels of gabapentin last year. I tried the maximum 3600mg but quickly came off it as wasn’t so much pain, more numbness. I couldn’t feel my hand or foot.
I know it’s been mentioned on here about hypersensitivity to pain. I’ve had an issue for a while with sores on my skin. I’ve seen doctor a couple of times but she’s still not sure if it’s infection or allergic reaction to something. Currently applying daktarin( again) and dermol and a steroid cream. But the stroke pain has definitely hightened the pain on the most badly affected areas on my left calf, ankle and achilles. It’s hard to know how bad my stroke pain is exactly due to said sores.
I’ve actually just requested a higher dose of amytrypytoline. I’ve tried different levels of pregabalin and this is about as good as it gets with that. Has anyone had any success with a combination of pregabalin and amytrypytoline? I believe the maximum level of amytrypytoline I’m allowed is 80mg unless anyone knows any different?
Friend, so you went off gabapentin because it made you lose feeling too much? Okay. It was your decision or the doctor’s? Just curious.
I don’t know anything about those other drugs you’re referring to. If I did, I’d chime in for sure.
I hope things get better for you – I really do. Please keep us informed.
Take good care of yourself.
Thanks Matthew 
. It was my decision. I went straight off them to low levels of pregabalin( both similar drugs)
I’ve twice gone a day or two without them, due to running out and not getting prescription in on time. Withdrawal symptoms are awful
It is…I have relatives on said drug who take it simply because they are addicted to it. They say it doesn’t even help them (they didn’t have strokes; they use it for neuropathy, back pain, etc.).
Again, I am not telling anyone what to do. If you want to be on the drug, that’s up to the person. But I don’t hear very good things about it in general.
Take good care.
@Nigelglos
I watched you tube today. One posed the question, what if chronic pain is simply a learned behaviour. Last time this “cold” event happened, brain produced this sensation. The brain does it next time and the next until it’s perfectly normal for the brain to just keep repeating.
This is long but I managed to watch about half of it this morning. I found it interesting. You may have already seen it, of course 
(5) The BEST WAYS To Heal Chronic Pain & Trauma WITHOUT Medication | Howard Schubiner - YouTube
Hi there,
My pain is the same, but fatigue feels like its getting worse, but that maybe my time of life/menopause contributing too.
I got a referral back to pain clinic, which wont be until Sept.
I haven’t had a look at the info from your previous post, so will do that.
How is your pain?
I heard about something called myofascial release - have you heard of it?
Also, Lions mane??
Im really sorry your pain has increased during this year. It sounds like a struggle.
I hope the hydrotherapy continues to work. Im really interested in that, was it through the NHS?
Also, I’d love to speak to a pain psychologist, I asked my Dr but he had no clue that they existed and i got given a general psychologist to cover anxiety and depression.
Can i ask who your pain psychologist is?
Many thanks for reaching out. Is good to hear how others suffering the same fate are coping and what new thongs people are trying.
No I haven’t, but i will definitely look into that - sounds intriguing. Thank you :))
Simon wants to add a post