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Pain/Fatigue caused by Spasticity - different therapies

bananapancakes99

Hi everyone,

Over the past few months, I have found that my spasiticity has worsened significantly. I'm finding it a lot more difficult to move/transfer and get frequent back pain and headaches which disturbs my sleep. Alongside GP support, it has been suggested to me to look at soft tissue type treatments and massage, just to loosen things a bit and also help with my stress levels (which I know is a contributing factor). What has people's experience been of these treatments? How have people found suitable practitioners who aren't phased by underlying "CP-ness"? Totally understand everyone is different etc., and also just to say that "serious causes" of my pain have been checked and ruled out.

Thanks so much

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chiarieds

Hi @bananapancakes99 - has your GP not considered referring you for physiotherapy? As well as massage, a physio may be able to help you further with an evaluation, & there's always hydrotherapy. A neurophysio would be the best to be referred to tho.

I also wonder if you have considered botulinum to decrease your spasticity. See: https://www.scope.org.uk/advice-and-support/botox/ or medication such as Baclofen.

You might like to try in the meanwhile this breathing exercise which helps with stress; it's one I used to teach as a physio, & now use myself when in pain, & to relax in bed. Please see: https://www.guysandstthomas.nhs.uk/resources/patient-information/therapies/abdominal-breathing.pdf

Please let us know how you get on, thank you.

bananapancakes99

Hi @chiarieds,
Thanks so much for your message, I'm chatting with the GP again tomorrow so will ask about a referral. It's quite tricky to find neurophysio (as I'm sure you know!). I guess it's also about what is being offered at the moment due to COVID. Completely agree though and will see what GP says tomorrow...
Bit reluctant to try the pharmacological route as I tend to get lots of side effects from meds, which creates more problems than it solves! Had Botox when I was younger and I went "too far" the other way and legs were jelly and completely hopeless for a couple of months afterwards....
Anyone else reading this, please don't be put off meds because of what I said above, I have never followed the rule book with these things and I often react weirdly to things!

Thank you so much!

chiarieds

Hi @bananapancakes99 - I do hope you get somewhere with your GP, & you might get a referral to see a physio at least. I'm quite passionate about physio, as I used to treat babies & young children with CP a long time ago. Since joining Scope I'm rather shocked how adults fare comparatively so badly, often due to a GP's lack of understanding, so hope you've got a good one!

I'm a bit like you with meds; they either don't work at all, or make me ill.

Please remember to let us know how you get on.

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