Spasticity, pain advice

My mum had her stroke in Nov last year and came home a month after. She has lost all speech and movement in her right side.

Due to inactivity she then was back in hospital and was diagnosed with Deep Vein Thrombosis.

Since this has happened and at the same time as the DVT developed she also started to get severe spasticity that has gradually got worse over the past month.

She is on gabapentin and the GP has upped her dose on that. Unfortunately it doesn’t seem to be making any difference. Her and my dad are having many sleepless nights which is not doing any of them or her recovery any good.

We have had little support from the community stroke teams and GP says she’s referred back to stroke doctor.

Does anyone have advice on anything else we can try as without sleep we are all a bit at breaking point?

CBD oil is often spoken about too.



Hi Nocola, so sorry for your mother and you having to come on here. This is great place for seeking advice and tips for coping. I’m sure others will be along tomorrow if not tonight :smile:

I myself am a stroke survivor, had it just over 2 years ago. It has took me a long time get back into sleeping and the reasons I think it took me so long was the worry and stress of not sleeping. After the first few months I gave myself a good talking to.

I’m retired so I’m not on any kind of time schedule, what difference is it going to make for me if I go to sleep by a certain time and wake up at a certain time. I am my own boss and the other 3 of my family can fend for themselves. So sit down, just close your eyes and do nothing for an hour. If I’m still awake an hour later then I’d watch tv, read, have a go at washing up, do physio activities then try again in another hour. You see, I’ve lost all sense of being tired.

And so this went on for many months and gradually I’d sleep and sleep for longer periods. You see, I’ve lost all sense of being tired. The only way to know I’d even be tired enough to sleep was when I’d wake up, because I had and still have no sense of being tired. But I do recognise a sign now for when I’m tired; I get this sort of pressure in my head and I just to stop whatever I’m doing, even if it’s just watching tv, and sit and close my eyes for an hour…that is if it’s not my que to go to bed for a good nights sleep.

I have a sleep pattern now and it took almost a year to get it, 2am to 10am and I can’t seem to fix it better that…for the time being :wink:

The funny thing is, no amount of exertion in the day could induce sleep either. Even when I started walking a couple hours each day, took back most household chores and driving. Not until I started recognising my brains new method of signalling I need to go into sleep mode now :laughing:

I don’t know if any of that might help you but I think you need to relax into it. It is what it is. The brain, I’ve found out, works at its own unique pace and can’t be rushed as I’m sure we’ve all tried and failed to do.

Stroke survivors are like new born babies in many ways in the beginning. I’m sure you’ve heard the phrase of babies ‘…not a good sleeper’ :laughing: They need lots of sleep, awake in odd hours, sleep when you don’t want them to, along with the frequent all nighters, and you will be continually adjusting and re-establishing to new sleep patterns until eventually they go through night.

And now my brain is telling me I’ve written too much and need to rest again :smile: I do hope all that alleviates you somewhat. It will get better given time :grin:

Hi, not sure it would work for everyone but my husband started getting this in his right leg. We started a series of gentle exercises (prompted by the physio) to try and move the muscles about so they wouldn’t get so tight. He can’t do any of these on his own I have to move the leg but it does seem to have helped him.

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@Nicolalalala i haven’t been affected by spasticity but talking to others some have had botox to help their spasticity. It might be worth an ask.

Not ideal, but could your mum & dad sleep in separate beds / rooms? At least your dad might get more sleep then. It’s something my mum & dad did whe dad was poorly as mum couldn’t look after him if she got no sleep.

Hope you get some answers soon xx

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Hi. I didn’t develop spasticity until about 4 months after my stroke. The worst areas affected are my right bicep and right ankle/calf. I have come off Gabapentin now, as even high doses didn’t help much. Botox injections didn’t do anything either. The only way to get relief for me is regular stretching of the affected muscles by putting your weight on them. I stretch my calf by standing on a slope with my ankle bent upwards. You need to find a physio who can assist her and show those who look after her the best exercises (her GP should be asked to refer her).
Good luck.

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