Stroke
Changes in sensations after a stroke
Numbness and heaviness
Changes in sensation were one of the first things that people noticed when they were having a stroke particularly numbness in the limbs on one side of the body or one side of the face (See 'The event' A stroke or TIA').
A few also experienced heaviness of a paralysed limb. One man described the sensation as having a two pound bag of sugar in his hand or a ton weight on his leg.
The numb part of the body sometimes felt like it did not belong to the person and was described as like having a dental anaesthetic, a wooden block, a foreigner's hand, an artificial limb or like a part of the body that had been removed and reattached. This shocked some people particularly when they were just waking up. One man described his shock on waking up and recalled not realising his arm was preventing him turning the pages of his newspaper.
The loss of sensation makes it feel like half her body has been removed and reattached and when...
The loss of sensation makes it feel like half her body has been removed and reattached and when...
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His leg and arm were initially paralysed and had no sensation. He recalls the shock of realising...
His leg and arm were initially paralysed and had no sensation. He recalls the shock of realising...
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It seemed, it seemed to be at that time, I mentioned my leg in bed, earlier. That was, the third week of the illness' I tried to turn over in bed and I felt this lump, a virtual lump, if you like. It was like a lump of wood and I got such a shock, you know, it really was. Once, once you realise, 'That's my leg'. It was totally dead and I remember, again in the early days, the doctors used to come round and say, 'Move your left toes', you know, the toes in your left foot. And I moved them. 'Move the toes in your right foot' and I thought I was moving them and it was just days later, I'd think, you know, the doctors were saying, 'That's good, that's good', you know. And I'm saying to myself, 'Did these toes move or was it my left toes that moved again?' you know. So there was absolutely no feeling whatsoever. I had no control... reading a book. I couldn't read a book. You know, I've loads and loads of books and I'll read anything, magazines, papers, you know. It was such a chore to even turn the pages. I had no control what, no control whatsoever in turning the pages. Even a paper lying in my lap on the bed. My right arm used to lie across the page and I couldn't work out why I couldn't turn the page, you know, because I couldn't feel, to me, my right arm wasn't lying there. Now, a really, really queer sensation, you know. To me, my right arm wasn't lying there and it's just when you realise, again, it's a shock. It's a real shock to your system, you know. You think, 'God, my right'', it was because my right arm was lying across the page that I can't, I can't turn it, you know. It seems so simple but, it's hard to explain, you know, its. But the bottom line is it's a real, real shock to your system when you realise exactly what's, what's wrong.
A few found that it was difficult to sleep comfortably with a numb limb and recalled having to get help moving a numb arm or leg when it had got caught underneath their body.
Can feel temperature and pain in his leg and arm but not movement. He sometimes has to wake his...
Can feel temperature and pain in his leg and arm but not movement. He sometimes has to wake his...
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Yeah. My arms as well. You can't describe it. It's just as though it doesn't belong to you. There's no feeling. Well, there is feeling because I can feel hot and cold but I can't feel us moving it or whatever, you know. It's very, very hard to describe what the feeling is.
How does it feel when you're perhaps in a bed? Does it feel, perhaps when you wake up?
Well, you don't, if I put my right leg on top of my left one, you can feel the heat off my, my right one because this one's always cold. The left one's always cold and my left arm, if I lie the wrong way in my bed, turn round the wrong way, if I lie on top of that, it's, I have to sometimes waken my wife to, because I can't get my arm out to, because I feel pain lying on it.
Some found the sensation improved and occasional completely recovered with time. Others continued to experience numbness in a limb even though movement had recovered. Having long term loss of feeling in a hand could affect everyday tasks such as picking up and carrying objects and writing. One woman used a stick because she felt that numbness in her leg and foot affected her balance.
Some people had ongoing itchiness, pins and needles or strange sensations in their limb. One woman described the sensation as like cotton wool being teased out. These sensations were generally not distressing and one woman said she found them quite comforting.
Muscle Spasms
Several people experienced muscle spasms or twitches in their paralysed limb. Many found they could cope with these although some said they were irritating, disturbed their sleep or were very painful.
One woman found muscle spasms initially very distressing as she did not know why it was happening and was not given any medication. Most found that spasms could be controlled with a muscle relaxing medication.
Experienced irritating muscle spasms which have continued after her stroke. She finds the muscle...
Experienced irritating muscle spasms which have continued after her stroke. She finds the muscle...
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That was tough. That was really tough. I was put in intensive care for the first few days I wasn't allowed any medication at all and I had terrible muscle spasm in my, paralysed arm and my paralysed leg, all the time. So that I couldn't, I couldn't sleep and they couldn't give me anything, to help me sleep because I was under observation for 48 hours and that was awful, really awful. That was so uncomfortable because I had, the whole, the right hand side of my body had disappeared. I mean, that's what happens. I no longer knew I had an arm and a leg. It had just gone, vanished. I didn't have one anymore, except it kept, they kept moving without me moving them, and it was very uncomfortable all the time. So, no, that was, that was very unpleasant indeed actually. I was desperate to get out, and into the main ward.
Did you get any help for the muscle spasms?
Not when I was under observation, no. They can't give you, me anything. But when, as soon as I got out of, observation, yeah, they gave me some drugs that helped my, the right hand side of my body to stop spasming.
Do you remember what you were on?
I know what I'm on now. I still take it but I don't know because, I mean, the medication is handed out in, hospitals and rehabilitation units to you in a little pot and you don't know what it is and you take it and obediently swallow it, so, I, I know that I was given medication ongoing for muscle spasm in my, arm or leg. Yeah. Muscle spasm is, is a nuisance, to be quite honest. Yeah. And I still suffer from it.
So what do you take now for it?
I take a drug called baclofen now, which I've been taken for quite a long time, which I find does help. Yeah. Because it drives you insane, a muscle spasm. It's always at the end of the day, at night, when you're really wanting to relax and your leg suddenly decides it doesn't want to, and you want to tear your skin off because it's actually inside and you want to itch everything there is inside your leg. It's, a most irritating experience.
Pain, sensitivity and central post stroke pain
Most people had not experienced any pain with their stroke, which surprised some as they thought a stroke might be painful. Some of those who had experienced pain felt that it was poorly understood, particularly central post stroke pain, a condition which only a small number of people experience after stroke.
Feels that painful conditions after stroke are poorly understood but has received useful...
Feels that painful conditions after stroke are poorly understood but has received useful...
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Well, for instance, when I had when I first discovered I'd got post stroke pain, I discovered that the occupational therapist that was treating me at the time had never heard of it and I don't think the GP I was seeing at the time had ever heard of it and I only heard of it because I asked for information about frozen shoulder and the information, the booklets, the very good booklet that the Stroke Association sent me about frozen shoulder was mainly about central post stroke pain. I think frozen shoulder is part of the whole thing of it and incidentally that only happens if you're not in a stroke unit and the nurses where you are don't realise that if your arm isn't laid in a particular way at night when you go to sleep and you lie on it, you will get a frozen shoulder but there are hardly any stroke units and so that would be something useful to know in case you go into hospital [laughter] because a frozen shoulder with central post stroke pain is the most terrible pain. It's the most terrible pain I've ever had.
A few people had a heightened sensitivity to cold or occasionally a feeling that a foot was wet or in water. They found things like getting into a swimming pool, placing a hand under running water, walking past a supermarket freezer cabinet, sitting on plastic seats or in a draft could cause unpleasant or painful sensations in the affected part of the body. One woman permanently wore a woollen glove because of a painful cold sensation in one hand.
His wife says that he often complains of a having a wet foot but the doctor has explained that...
His wife says that he often complains of a having a wet foot but the doctor has explained that...
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Husband' Aye.
Wife' There was one night when [laughs] I got him into bed, you, that's usually when he said that, 'My feet are soaking' and I'd say, check, I'd say 'How could your feet be wet? They're not wet'. So I went away to bed but he had me up and down till about 12 o'clock at night about 40 times shouting that his feet were wet, you know, I had to keep going through and tell him they weren't wet and I would just get back to bed and he would shout they were wet. But it's just his mind. I don't know.
She feels that her hand is unpleasantly cold so she wears a glove to stop it becoming painful.
She feels that her hand is unpleasantly cold so she wears a glove to stop it becoming painful.
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Pardon?
You're wearing a glove on your hand?
It's because it's numb and cold. Never really gets warmed up. Though if you feel it, it will be quite normal but I find it's cold. Mm hmm.
And so do you wear the glove all the time?
I wear this one glove all the time. It, I don't, this one's alright, you see. And when I don't wear it' if it gets cold, it gets sore. So I just wear it, you know. Do my finger exercises and' it hasn't really changed very much for quite some time. It still keeps the same pace but I don't know whether that will come back or not but I certainly do my exercises and hoping it will come back, you know. But it could be worse. I mean, that's not a great disablement. It's just I can do my finger exercises. Mm hmm.
Those with severe post stroke pain described it as unrelenting and very disabling. They found that type of clothing, environment and stressful situations could all exacerbate the pain.
A woman explained that the pain was due to changes in the brain, rather than an injury and was therefore difficult to relieve.
Has severe pain which she has been told is central post stroke pain due to a clot which damaged...
Has severe pain which she has been told is central post stroke pain due to a clot which damaged...
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Medication including amitriptyline (an antidepressant with pain relieving effects) and gabapentin (an antiepileptic with pain relieving effects) had helped give relief to some people. Side effects were sometimes a problem particularly with amitriptyline which could cause a dry mouth and ulcers.
Took amitryptiline for central post stroke pain but experienced side effects and now takes...
Took amitryptiline for central post stroke pain but experienced side effects and now takes...
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People had tried lots of different methods for relieving the pain including complementary therapies such as acupuncture and hypnosis. Most of these had not helped. Methods which had helped included hot baths/showers, hot water bottles and blankets, relaxation and distraction.
Manages her severe central post stroke pain with relaxation, hot baths and distraction Medication...
Manages her severe central post stroke pain with relaxation, hot baths and distraction Medication...
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Sometimes I won't stay upstairs because I'll wake my daughters. I'll come down here and I'll, I'll even wash the kitchen floor or, my right hand, fortunately I'm right handed, I, I'll do ironing. It's mind over matter. You have to not let it beat you. It's something that you just have to get through in a way. There are certain things that make it an awful lot worse and I avoid them cold. I can walk past a freezer in a supermarket and it's as if somebody's put a knife through my shoulder. It's there all the time at different levels. At its worst, it's like your worst nightmare, it's something that I couldn't begin to describe because I've never had pain that bad before. It's as if, it's frozen. I've never been skiing and I've never had frostbite but it's so icy cold all the time deep in my shoulder, it's as if it's on fire and that's, that's a really ridiculous way to describe it but it feels like frostbite constantly in my shoulder and down my arm so it has completely, completely changed my life, the pain that the stroke itself means to pain to me because it's the only deficit I've unfortunately been left with. At the moment, there isn't really any other treatment for it. I've tried reflexology, I've tried acupuncture, I've tried hypnosis. To be honest, I'd jump off a cliff naked if somebody said it would work and I'd even got to the stage where I'd been to see my family doctor and wasn't coping with the pain and was under stress, also, in different areas of my life and that impacted greatly on the extent of the pain and the depth of it, the intensity is far, far worse if I get very upset. I've known, I've no idea why that should interact but I know from my experience that if I get worried, stressed, very upset, my pain is a thousand times worse or maybe my ability to deal with isn't as good. So I try and avoid the things that I know will make it worse.
It's not an easy pain to live with because it's not constant, it's here all the time but then it can come in a quick sudden surge for no apparent reason and literally wake me from a deep sleep and, and I'll wake and I'll just, I'll just be rocking, as you do with cramp when you have to wait for it to subside and then when it gets past that intensity I go and I do my physio or I'll have a bath. I feel, I found that relaxation tapes help enormously that I, I'll do a set of physio and then I'll put a tape on and I do find that very, very positive and very therapeutic.
Shoulder pain
Pain in the shoulder after stroke was sometimes due to partial dislocation of the shoulder joint or due to the joints becoming stiff due to immobility (See Interview 18 above). These conditions can develop if the paralysed arm has not been positioned properly or if the person has not been moved correctly in the early time after a stroke.
Most people found that the pain could be controlled with paracetamol based pain medication and physiotherapy (see 'Stroke recovery' Physical aspects and mobility').
A few people had been given a special type of sling which relieves the pressure of the paralysed shoulder. Exercises given by a physiotherapist also helped.
He has pain in his shoulder because it has become partially dislocated due to the weight of his...
He has pain in his shoulder because it has become partially dislocated due to the weight of his...
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But it seems to mean that over time now, the range of movement in my arm, even if I just try and lift my arm up myself, I can't lift it as high as I used to be able to because the shoulder, shoulder pain is restrictive. But it's really, I think, just down to the dead weight of the arm just dangling, pulling on the, on the joint all the time.
And how do you manage with the pain?
Well, I was taking the painkillers but they used to make me a bit confused and a bit knocked off, so I, I cut those down. I used to take them 3 times a day but now I just take them at night if I'm in particular pain at the time. But otherwise I just take paracetamol which works adequately.
Last reviewed June 2017.
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