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End of my tether - not a friendly hug

can you please offer me some help? I have SPMS and had a flare up a couple of weeks ago. I am really struggling to cope with the MS hug - it hurts so much. Can’t sleep - can’t sit comfortably - can’t breathe without extreme pain. Somebody help please?

Thank you for any advice you may have. Xx

Micha,

I can not really offer advice but I can share what helped me a bit with the horrible MS hug. In the past I did a bit of relaxation techniques which involved deep breathing and being very aware of what is going on in my body. When I feel a spasm or a hug trying to start, rather than tense up or stress about it (easier said than done) I REALLY relax and breathe deeply “into the sensation” this sounds like space cadet BS but it seems to help me. Sorry I can not offer anything better.

Maybe you should speak with your GP or nurse who may have better ideas or can suggest some medication.

Good luck

Mick

Mick - thank you for taking the time to reply - maybe that’s what I need to try to do. How do you get deeply relaxed?

thanks again

micha

Micha,

not as easy as it sounds, I was told about slow deep breathing, sounds waffly but breathing right out and being ridiculously aware of using your entire lung capacity whilst not thinking of anything apart from the sensation of the air entering or leaving your lungs. I am a cynical old techie and when they told me to practice these techniques I thought it was probably just some “new age” mumbo jumbo. However I stuck at it and now it is part of my toolkit.

All the best

Mick

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hi

muscle relaxant meds help.

eg baclofen, diazepam etc

mick’s technique sounds like mindfulness which is brilliant.

very odd being taught to focus on the pain though!

carole x

Carole,

It was part of a study of the efficacy of Mindfulness for the NHS. We were put in a functional MRI scanner and give screen based tasks. We then did a 6 week online mindfulness course after which we wen in the scanner again and did the same tasks, it was quite remarkable. Had I not been involved I would not have believed it. (my middle name is Thomas) I dont focus on pain but I am usually aware when spasms are about to erupt.

I tried the same techniques to alleviate my tinnitus and it is completely useless. (some you win and some you don’t)

I was going to include a link for Misha on Mindfulness body scan but they were way too waffly. If you are there Misha try Googling Mindfulness body scan - You MAY find something that helps.

Mick

Mick

not waffling at all. Any suggestions welcomed. Will google mindfulness body scan.

thank you

micha x

Hi carole,

thank you for replying. I take baclofen but only 10mg - maybe I need to increase it. Am seeing my practice nurse tomorrow so will mention it to her. I hope she can speak to the doctor.

thanks again.

Micha x