This website provides a little more information to supplement the information that is on the stroke association pages.
I have added an explanation for some of the items mentioned in the CPSP section
Lesion - a region in an organ which has suffered damage. Brain or Central Nervous System (CNS) are relevant here Somatosensory - part of the brain that covers touch and where our limbs are (proprioception) Spontaneous dysesthesia - all the unpleasant cpsp sensations Allodynia - pain due to a stimulus that does not normally provoke pain two-point discrimination - the ability to tell that two nearby touches of the skin are truly two different points
There are some medications mentioned I have not come across before
Lamotrigine - an epilepsy medicine but no mention of pain relief in the NHS site
Phenytoin - another epilepsy medicine but this time the NHS website does mention pain relief
Carbamazepine - yet another epilepsy medicine and the NHS website mentions diabetes nerve pain relief
Thank you for sharing, Nigelos. I don’t often join your conversations with Pando and Outlander about the pain as no one has ever given me any answers to explain what it is called, why I have it, will it go away, or is there anything I can do or take to make it better. Everyone has stayed away from the conversation, even when asked, or there was the one cardiothoracic surgeons Nurse practitioner who told me I would just have to deal with it! I quit asking about it. My Neuro Physical Medicine and Rehabilitation Specialist did say she knew exactly what I was talking about when I told her of some incidences of when I thought I had wet myself only to find myself completely dry, but I swear I could feel wetness seeping all down me. And the times when it feels like someone is burning me with the end of a cigar, or how it feels to have a blanket with a patterned weave or a pair of jeans against my skin. All feel like torture to me.
And the feeling of rubberbands pulling tightly between my fingers or toes so it is extremely hard to move them (PS no real rubber bands, that is just what it feels like).
The worst, though, has to be the constant burning cold/freezing hot on my entire left side and some of my right side. I think of it as I do the tinnitus, extremely annoying but can be forgotten in moments of distraction with something else that takes focus/concentration, but when it becomes too much, requires a bit of rest, (and in my case, as much heat as I can get).
I have spoken with Pando about it once or twice before, but I don’t think his feels quite the same way. Again, I have no diagnosis to compare, just the pains that I am certain are neurological both because of the way they feel and the Physiatrists mention.
Hi Deann, I could have written your post
It’s only if late I have had that wetness sensation, that was weird and unpleasant. Feels like a cold electrical feeling. It’s so realistic of being wet and such a surprise to find it’s just a sensation.
I completely get the being pulled bit. Often it feels like someone is pulling back my arm by the biceps. My fingers on the left hand have the same. Like they are twisting on their own.
The latest thing seems to be, whilst the strength in my left hand is there, the reduced sensation at times means I am just not as good as I was holding things.
Every day seems to be a bit of a battle against dry skin. I added some moisturiser to my left hand side last night and it gave me a really painful sensation. Nuts how something so innocuous was so unpleasant.
I have taken an extra 25mg of pregablin today and will see if that makes a difference.
I feel a bit resigned. I don’t think this is stopping me yet but overall things are getting harder or more unpleasant to do. I think at times, the limbs are all tensed up and there is no way to relax them, try as I might. A bit of sleep sometimes resets things.
Hate the cold/stress, like you, love some warmth.
If only it would just level out.
Wish you some good luck.
Cheers
Nigel
Tactile hallucination, I think they call it, probably in the similar sense of synesthesia but a result of the brain misfiring. It doesn’t sound pleasant, and I am sorry you have to deal with those sensations. If only it were a pleasant sensation. I watched a segment on a chap who had synesthesia, which isn’t what you have obviously, but he could taste people’s names.
Wow! While some people’s names leave a bad taste in my mouth, I don’t think I would actually want to taste them for real!
I do think if I would remember to move those fingers and toes much more often I would do a bit better. Like typing right now is stretching them a bit and feels better than just allowing them to lay still so much. Holding a book though, hurts after a short time and leaves my left hand sore for awhile. Perhaps getting into some garden dirt will help. The toes, though, just thinking to move them a bit is all I can think might help. I don’t walk enough either. Need to find a ride to the park for a pretty walk on dirt to get me motivated. Or at least a shopping trip to a big box store where there is much to look at.
Hey @Nigelglos@DeAnn Why don’t you use the cafe link to have some discussion and compare notes? Maybe invite some of the others. You could join the Thursday sessions and take a break out room for part of the time to compare notes
I love the idea of people who leave a bad taste in your mouth compared to actually tasting names - weird we should add that to the list of things not generally included in the FAST test
DeAnn I hadn’t realised you had central post stroke pain syndrome as well I knew you had lots of complications but CPSP wasn’t one I was aware of
I noticed I’ve been getting lots of spurious pain like symptoms but I don’t think they are CPSP I think they’re more muscle contractions so tone rather than hypersensitivity
@SimonInEdinburgh, I have not been diagnosed with anything regarding the pains and weird stuff. They totally ignore it. I quit bothering them with it. Obviously it is not hurting my health, if you don’t count odd sleep due to it, or skipping exercises more often because of it. I have not talked in the discussions about it as I am at least able to use my extremities regardless of the pain, lack of feeling, or strange sensations.
I have been missing you due to illness. Finally got a new med from my Pulmonologist that with only one dose in so far, has made a major difference! I have a new inhaler to replace a different one. This one has corticosteroids which I would have preferred to stay away from. I have changed my mind about that after the huge improvement. My lungs felt like they were filled with cement. Now they only feel a little heavy.
Right now my biggest issue is that I keep swelling in my abdomen and legs like I have elephantitis. That is fairly new and came on along with the cement lungs. I don’t see my cardiologist or GP until May. If it doesn’t get better, I will call the nurse line to see if they can get me in sooner or ask should I go to ER. Don’t want to mess around too long.
Mostly diagnosis by somebody wearing a blue pair of cotton scrubs strikes me as an irrelevance - in that we become capable of recognising the symptoms ourselves .
Getting somebody in cotton scrubs to take action is relevant and a delay until May is not good
You were lovingly missed yesterday. I hope you feel up to socialising in whatever manner soon I’m sure you’re boyfriend is missing you
I am sure you are right about waiting. I won’t wait too long. At least I am covered by insurance now, so no excuse to put myself at risk to try to stay away.
I have missed you all as well. The ‘boyfriend’ may be too much for me to handle while feeling unwell. I suspect he might be in a ‘mood’ and that may cause me to be in one as well. I am a mostly patient and peaceful person, but put stroke emotions together with being tired and ill, he might find me irritable to the point of not witholding my temper. I can be SCARY…BOO!!!
Maybe this did happen to you, and something similar is triggering that memory / reaction ? I often have a pain, like a cut on my foot in between big toe and long toe. When I check, there is nothing whatsoever there. Then I think back to a time when I stepped on something on a rock, at the seaside, oh… 40 years ago. My foot took a long time to heal from that injury, and I remember the pain which is what I feel now. I constantly check, but there is no cut.
I’m sorry that you are all suffering some degree of post stroke pain, but I just wanted to say how helpful all your discussions have been. I live in a very rural area and have been discharged from the Stroke Nurse’s clinic. I’ve never seen a nurologist or anyone else with a fancy title as I’d have to travel for hours to get to one and would probably feel a lot worse just because of the effort. I make do with the advice of my (excellent) GP and with the help of all of you here.
I do suffer from some post stroke pain. It sounds very like that you have all described (mainly a cold sort of burning) but your stories, and my own experience with the very very occasional strong martini suggest that medication is unlikely to prove very useful. I get relief from heat. Probably as I’m still a bit menopausal I don’t like to get too hot but do find the gentle heat of my daughter’s little dog who likes to cuddle up to my legs very therapeutic. Don’t suppose I would get anything much better from a fancy titled clinic.
That sounds exactly like what we have been talking about. And your heating pad is perfect! I have a very large canine one and a heated blanket on my bed. I have to cover the more affected side, or lay it on the blanket, but use my fan to keep the rest of me cool enough. LOL. I seem a bit confused! I sweat without the fan, but it takes forever for especially my left leg to get warm enough for long enough to feel some relief. Hot bath works as well, just have to be careful to test with a part of my body that can feel if the temperature is too high.
My husband had a lot of pain after his stroke. The hypersensitivity in his stroke hand was initially a problem but of the advice of the physio we stimulated it every day by massaging with cream and now the sensation is almost normal. Hypersensitivy to skin temperature was resolved by the not cheap solution of installing an aquaLisa shower where you can set the temperature before you get in. Spasticity seems to improve by lots of passive exercising and moving the limb through the full range of movement. The hospital just wanted to up the Pregabalin to 300mg but I was against this on the ground of addiction and weight gain and he is now off it completely… But last week I was saying he was a woos because he was complaining about a miniscule problem with his toe nail. Duh! Only just realised it is probably a bit of allodynia type hypersensitivity.
Many of you have probably already seen these, but I found them today so am sharing. (At least I know now that I don’t have Allodynia). Clear explanations in language that is understandable
