Hi RuOxley
I am so pleased i read your post. I too have the pain tingling etc. I have been trying to get my doctor to refer me to a pain clinic. I want to come off or reduce my gabapentin (3600mg)a day as they don’t seem to help. I wanted to go on tramadol to try and manage the pain. Like you i do a lot of distraction which helps a lot. I too don’t think it will ever go away, but managing it better would be amazing x I hope you continue to improve x
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Hi helen.07,
Thank you for your message. I really hope you get a referral soon - keep pushing your Dr on it! As soon as I saw my pain consultant she totally understood and it felt like “Huzzah! It’s not my imagination” she prescribed Tramadol straight away and signed me onto a pain management course - when you get to the pain clinic remember to tell the pain consultant that you also want to attend pain management course.
I don’t think pain clinics are at every hospital, so be prepared to travel (but hopefully it’ll be local for you).
Good luck. Keep me informed 
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Hi Helen, I started off on low levels of gabapentin earlier in the year without finding much relief eventually got put up to maximum of 3600mg a day. It made the stroke pain worse, to the point where I went for a drive and had to pull over cos the pins and needles was that bad I couldn’t feel my foot on the clutch. I haven’t driven since and aren’t going too until I find constant relief. Been up and down last few days with the pregabalin, but still early days being on it and I know there’s scope to ask my doctor for a higher dose in a few weeks.
All the best and hope you find the right solution that works for you 
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Yes, gabapentin is not always effective; in fact, some of these drugs can make things a million times worse.
A lot of times, we’re looking for solutions in medications. But, sadly, we’re often very disappointed.
I have a few relatives who take gabapentin for various ailments. They all say that are immune to it, but they “just take it to take it.” LOL
It’s also very highly addictive.
Take good care of yourself.
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Thanks for sharing Nigelglos. Are you going to try hypnotherapy? If so it would be really interesting to know what you think of it.
I’m going to find that book 
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Thanks Nigelglos, thats interesting stuff
Thanks for the links SimonInEdinburgh
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Hi all. Just wondering, but for those who got the better of CPSP. Did you get rid of the pain completely or was there a certain level of discomfort you still have to live with?
Feeling like I need to get mine down enough just to be able to drive then there’ll be enough of a distraction for me to return to pretty much normal again in time. At the moment my pain level is varying between a 7 and 8.
I’ve got another docs appointment in a week and hoping I’ll be put on the next level of pregabalin.currently on 150mg a day.
Cheers
Joey
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Thank you for the information, tightness is steadily increasing despite movement, exercises, etc. I really wish something more was being done.
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So, yes I have been checked and if it’s not velocity dependent, it’s considered “tone”. I have mostly tone and I have to use a sit down elliptical machine practically daily to slow the progression, but on most days the tight squeezing is way up here on the pain scale. No medications helped this either, so I’m trying to believe there may be some future breakthroughs in the treatment of thalamic stroke damage.
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Hello, thank you for reading this. I am not sure of the difference, only what they tell me is that rigidity or tone remains consistent throughout movement (?) while spasticity reacts to range of motion. I wish I could explain it better. For me it’s hell as I have the feeling of being in stiff and squeezed throughout the affected side, despite being able to move my arm and leg. There might be some spasticity in the arm I’m told, but everything else is central post stroke pain and it’s evil.
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This is at least something.
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Im not replying, so sorry for messing up the email trail.
I just wanted to seek help with mental health. My pain is definitely feeling worse over this last year I’d say, making my fatigue worse and thus my mental health. Everything is so overwhelming, I’m so anxious. Over the last 8 years it’s been on and off bad, but seems to steadily be gradually getting worse and much more difficult to pull myself together. I just don’t care about stuff anymore (except my son - thank god he gives my a reason to care), im so bored and lonely. i often wish id not wake up or have another stroke - but fatal this time. I think I need help!
Does stroke association give therapy for long term stroke survivors?
Im sure there must be others feeling the same.
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Ive just found this group out there. There’s a zoom support group session on Tues 26th Mar, just in case anyone else needs it…
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Have you seen this:
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8 years is a long, long time to be suffering with chronic pain! And who wouldn’t be anxious if that pain is getting worse, especially after that length of time. You need some hope to break the cycle of pain, fatigue and anxiety. I haven’t anything helpful to say or any advice to give but just want you to know I’m thinking of you, as I’m sure many others on this forum are.
Perhaps Burning Nights will have something to offer you🙏 Let us know if you get a chance.
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Hi Nigelglos,
I agree, it’s hard to know what the future holds, which can feel quite depressing - which is why I think my mood is deteriorating, because the longer it goes on the more I lose hope. BUT! I’m hopeful for this new group - I signed up to join in the one tomorrow.
I found that after my Dr referred me to a pain clinic and I was put on a pain management program - which I found really helpful - that’s it! It’s as if the medical world thinks they’ve fixed you! It frustrates me so much!
Although this forum is a massive help - good job we have charities like these.
My triggers can be weather (cold & wet), tiredness (physical & mental), emotional stress, exercise, bordem.
I deal with my pain by distraction (anything from cleaning, reading, watching TV or meditation), exercise (swimming, yoga, walking), seeing friends. I just need to know my limits and stick to them, which is one of the most difficult parts of managing pain.
I’m sure you can concur with a lot of these triggers and techniques. If you have any others let me know.
Don’t give up hope though - ever! I still have lots of good days where my pain is manageable and I feel like I can do everything (just don’t! Do everything - otherwise you’ll pay for it ;D).
There are dark, really intensely painful days/periods. But you can pull yourself through them, just remember the good days and really think about and fo something that’ll make you smile :).
Thank you, I appreciate that, it means a lot to know there are people who understand 
. I’m going to watch that video now - i haven’t seen it before.
Thanks again
Definitely take a look! I think im going to try to get a referral. Not inly that but if you go onto The Complex Regional Pain Syndrome (CRPS) Service: Referral & Pathway : The National CRPS and Complex Cancer Late Effects Rehabilitation Service, Bath
And look in Useful Resources section theres lots of helpful stuff in there.
Thank you @Trace57 I’d never heard of this before. I expect you’ve enlightened a lot of sufferers on this forum.
I find this interesting:
“Whatever happens to fire up the pain doesn’t cease when the trigger has gone. So presumably the body still perceives the “danger” or once the over excitability has started, there is no quick way to shut it off. The area that thinks it’s in pain tightens up which probably doesn’t help.”
I’m not convinced (yet!) that I have CPSP - for me, it’s all about sensation and no pain as such. (I’m 9 months post stroke). But something struck me when I read the above. Clothing has become a problem over the past 2-3 months and whatever I wear to cover the stroke arm immediately provokes a very uncomfortable sensation which doesn’t stop if the clothing is removed, although it will calm down after a couple of hours or so. So I tend to wear sleeveless tops at home. But I can sleep all night in only my knickers and not have that sensation. So it would seem that it’s only when the arm is encased in a sleeve that it happens ( short sleeves are just as bad). I’m longing for the warmer weather so I can get outside without having to cover up. But really, I would like it all to just go away.
I could write an essay on all the sensory issues and weird stuff going on - it’s forever changing - but I don’t experience the type of pain you’re describing. There was a short period of time at the end of last year where the bicep felt like it was being squeezed but nothing since. I’ve got a problem with the stroke shoulder which doesn’t appear to be stroke related and it started a few months ago. An xray shows possible rotator cuff impingement. The shoulder does feel tight but not stiff; in fact, that whole arm feels tight and heavy which it didn’t when I was discharged from hospital but no-one’s that interested because it’s still mostly functional. Now on the proverbial waiting list for physio.
I’m gonna stop writing now or I shall go on and on. The problem with writing it all down is that it makes it really real and can start that journey down a rabbit hole (not aIways helpful) and I want to preserve my energy to make the most of another day 
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