My partner is currently in a rehab centre. 3 months ago had a stroke but this pain has now kicked in and she’s in so much pain. She’s obv taking a lot of medication which doesn’t seem to help. She’s not taken any anti depressants but could these help? Is there anything I can do to help? I feel so helpless and she’s obviously mentally not in a good place. Will this pain ever cease? She is in agony 24/7 it’s awful to watch. Hoping for any help that maybe out there. Thanks
I haven’t been through CPSP but I’ve been through lots of pain. When you can’t sleep because of pain, it’s no good. Generally, if it’s stroke-side pain, I almost welcome it (to a degree). That’s because I am still trying to regain sensation that side. Interestingly, my Chinese Dr. told me no pain goes on all through the night, so there’s always a window of opportunity to go to sleep. It seemed a false statement when I first heard it, but thinking back, I wasn’t able to prove him wrong. Even so, for the whole of January I slept one hour per night. I almost lost my mind.
Stimulate her sense of smell; maybe some lavender. A connection with nature; the smell of fresh air. The healing power of connecting with nature is very strong. The incentive that will give to fight for life is considerable. A ray of sunlight (I know it’s not the season but…)
The next step is to work on positive thinking, possibly listening to music is good therapy. Possibly say a few prayers together. What 2 people can achieve together is considerable… many consider a couple who stay close are close to indestructible. I also recommend CBD oil (+THC), but this is another subject.
I don’t pretend any of the above works straight away, but I know what it feels like to see no way out. Good luck to you and your partner.
Ciao, Roland
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@Fledge If you haven’t already seen it then the thread that you really need to get to be part of is
https://forum.mystrokeguide.com/t/central-post-stroke-pain-again-sorry/34560?u=simoninedinburgh
To summarise the whole 2 hours of reading there I think the nearest I could get is “no there isn’t anything you can do for the pain, and anecdotal evidence is there is nothing the medical profession currently knows how to do either but you can be there to hold a hand, to sympathise, to assist if your partner wants to try to take some desensitization measures, you’ll probably have to be thick skinned on occasions when they’re relentless pain needs an emotional outlet and that will be hard but it will also be extremely valuable”
-but
I’m only speculating because I don’t have CPSP
Ciao
Simon
PS if you search for CPSP in this forum with a magnifying glass in the top right hand corner and related topics youll turn up other threads but I’ve highlighted the main one to you
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I had a stroke in April and now have CPSP. It’s bloody awful and unfortunately there doesn’t appear to be a cure, in fact the medical profession seems to have little to say about it. There are various drugs that can help along with anti depressants. Has your partner spoken to her GP at all ?
There are also designated pain clinics that may be of help, again your GP should help with a referral. I find that exercise, together with meditation can help. Those of us that do suffer with CPSP seem to have to live with it as best we can. I will be starting a treatment called RTMS (Repetitive Transcranial Magnetic Stimulation) therapy shortly but I can’t say if it will work, if it does I’ll be shouting it from the rooftops.
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Thank you for this advice. Outdoor smells sounds like a plan. I was thinking some aromatherapy oils. Sounds like you’ve been through it too. It’s awful.
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What I find frustrating regarding CPSP is the waiting. Waiting so many weeks to see if a certain medication is working. So in my own case today the stroke pain isnt too bad, but I know I could be different tomorrow. I’ve got another 3 weeks or so then I’ll kind of know for sure if what I’m taking is right for me and if it isn’t I go back to my doctor again and ask for a higher dose then the whole 4/6 week process starts again.
There’s no quick fix. If you have a migraine, you take couple of paracetamol and you know within couple of hours, your migraine will be gone. It’s trial and error with CPSP medication, which in my own case has been ongoing for the last 15 months
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Someone visited me when I was in hospital for 3 weeks, they had picked a few leaves of sage which really “spoke” to me. The smell was bliss
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@Fledge i don’t have CPSP but really feel for her & it must be so hard for you watching her in that much pain.
Maybe try some distraction techniques. Things she enjoys might help take her mind off it temporarily.
Push for a referral to a pain clinic too.
Sending my best wishes.
Ann
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@Nigelglos - that’s a really good summary post of what I confidently guess has been many hours of research on a very tough journey
Do you want to add it to our list of best posts or shall I?
@clibbers1 - I’m so sorry to hear you developed CPSP 
- Do I accurately remember that your health insurance is covering your needs or have you found an NHS avenue to RTMS (rTMS?) ?
I know others have tried to find it on the NHS with difficulty. I also know that very many will be interested in how efficacious you find it. Fingers crossed on your behalf
@stokiejoey must be so frustrating
Wonder if you you’d benefit from the debugging skills of a programmer/ software tester to build a systematic search regime! I’d guess the two needs share some basic practises and as CPSP is so poorly understood medically maybe importing ideas from other sources helps?
2¢
Ciao
Simon
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Hi @Nigelglos
I like to think that maybe in that case I have been of some small help in encouraging you forwards - a contrast from the accusations from admin that I’m a spammer who’s post will be deleted & Who had to be banned from a month 
I’m wondering if we as a community can be coordinated and motivated to give those who are capable support in making the case more strongly. I’m aware of people like Chris Bryant and also some professors / PhD supervisors, venture capital funded startups etc.
I would think if we all used our six degrees of separation we could turn up some influence . Let’s give it a go? I don’t have the stamina to do much - I am able to keep giving a spark if there is fuel and oxygen elsewhere
I’ll add your post to the consolidated best of the best
My own experience of LinkedIn is that it gives the reach to contact but a lot more is needed to make a meaningful connection.
My experience of academia is that since they are ultimately experiencing costs they need to raise revenue and that’s why they put tasty morsels in front of you that are both known to be to your palate and perhaps provoke other interests. It’s also why they have the old stuff for free because the new stuff has a prospect of a premium price.
If you can get into researchgate then it tends to be better but still not the most recent publications unless you have a subscription which is easiest done by connection to a university or research facility - I can’t blame them.
Ciao
Simon
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I’ll respond later to the above
- on a different note I’ve sent you a couple of chats I don’t know if you’ve seen them :-). No probs if they’re not of any interest, that will be perfectly cool
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There is no private medical cover for Rtms, my treatment will be self funded. As the clinic in Oxford, where I will go for treatment. have advised 30 daily sessions, it is costly. If it works, however, it will be worth it.
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fingers very firmly crossed
i know others will be interested
i was asked yesterday by a phd student & her supervisr “how much would you pay for a device aimed at upper limb rcovery?”
we all replied "petty much what ever you asked if it gave us back a woking hand - but nothing if its just another smoke & mirrors gizmo - its the risk/rewad equation thats skewd
once again good luck
ps must retutn to phone where i can use speech2text - left handed 1 finger typing sucks!!
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Thanx - downloaded it
Next Challenge is to read it!
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Hi @Nigelglos
I don’t have anywhere near your degree of background knowledge and first hand experience - so I would be interested in your view of the completeness of the flint article .
I generally find that all the information on flint’s website is good. It’s a better resource than very many
The article you’ve included here it seems to me to give a very good summary of the key points and as such is a good sense maker or context orientation for deeper conversations around central post stroke of pain .
I also think this article uses three times as many words as are needed for the amount of information conveyed! As such if I get strongly motivated I will post a summary - hence my asking whether you feel it omits or miss describes any salient points?
Ciao
Simon
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Fledge,
I’m really sorry to hear that your partner is suffering with her pain. It must be horrible to feel helpless - but you’re not! Just by being empathetic can help. I was on antidepressants until quite recently (thought i could ween off) but im thinking of going back on. So, they could help her to just manage the pain - but she needs to chat about it with her GP and find which ones work best for her.
My heated blanket is my goto when my pain is really bad. Also distraction help, I use meditation apps and audio books, that way i don’t have to hold anything. If shes able, maybe a hobby - drawing (my husband bought me a colouring book when i had my first stroke, i enjoy it), jigsaws, play board games together (if you have time).
What is she taking? Are there any other nerve pain meds shes not tried - it took me a long time to find the right ones, the pain’s always present and can be horrendous, but I’m able to manage my pain day to day.
I hope the people on this forum have given you some food for thought. Let us know how you get on. 
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Hi there. Last week she was injected with botox into her leg and arm on the side she can’t use in the hope it will relax the muscles and help her. Still waiting to see if this helps. She’s also gone onto anti depressants but she is still in rehab so I’ve not spoken to her GP but also taking Gabapentin and morphine but this doesn’t seem to help what so ever. I do like the heated blanket as the warmth does seem to help
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