Help, what do I do now?

Hi everyone, hope you all are feeling good today,

I’m just wondering what on earth I can do now to get some support, or something - I can’t think straight at the moment. I’ve just stopped crying hysterically and I’m feeling lost and a bit alone to try and cope with things after getting the most horrific neuropathic pains down my left arm from shoulder to fingertips and radiating round to the middle of my back and across my stomach. I have been really ill with these pains since before Christmas and have had emergency doctors out who increased my Pregabalin dosage plus prescribed Codene. I have hardly been able to wash (I really hate to admit this as I feel awful) or wash my hair because everytime I try, these pains just double me up and take my breath away. I was feeling great this morning and got everything ready for a bath but no; I reached out for something and bam!

I feel like life is passing me by and the days are merging into one long chore. I’ve been trawling the web for some pointers as to what help is available to me but my head’s full of cotton wool, It would be nice if someone could help me with my hair and to get a shower at least, just this once. Or maybe I’m gonna have to face up to being like this permanently. I see my neurologist next month, do you think she can offer any help?

Sorry to be so depressing!

it may be the ms hug.

it is horrible and my family thought i was having a heart attack.

if it IS the hug, you may like to know what causes it.

it’s the tiny (intercostal) muscles between the ribs going into spasm.

a good muscle relaxant is needed, diazepam or baclofen if you have them.

also warm pads then cool pads to confuse the blighter.

but you have been suffering for quite a while so it may not be the hug.

good that you are seeing your neuro next month.

healing thoughts

carole x


Do you think that going to a hairdresser would be an option?

Just having a good wash (and a massage) could make a lot of other things more manageable.


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Have you considered getting in touch with your local authority to see if they can help organise some care? It sounds to me that you need some help bathing and hair washing. My council have something called first contact who arrange for someone to come to your home to assess your situation and needs. Just ring your councils main switchboard they should be able to put you through to the correct dept. Best of luck Jan x

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Thanks for that Carole,

Although I had reported it as spasm, my MS Nurse had said it is spasticity, I’m not sure what the difference is any more, it’s like someone is holding a stun gun under my arm so that the electric shocks travel down the radial nerve to my finger tips, yeah it does always seem like I’ll have a heart attack but maybe it’s morphing into something else as the pain is now travelling around my midriff area, and it sometimes feels like I’m getting cramp.

The Neurologist regards me as having PPMS but my MS nurse diagnoses PMS, although not sure just how much notice I can take as they never see me when I’m ill, plus,
I wonder whether anyone else is paying for a Personal Alarm system that’s linked up to the Social Services. I had thought it was going to be a good idea but of the three times I’ve had to use it the girls have just stood about and said there was nothing they could do for me and that they were not trained to help with anything other than the bare minimum. Another reason for worrying so much as to where I turn next to get the right sort of quality help.

Linda ((x))

Thanks Jan,

I’ll definitely get in touch with them tomorrow, I do have a Social Worker so I’ll hunt her number out.

Luv Linda.

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sorry that things have got no easier for you.

like you i get confused with the medical terminology spasm v spasticity, what matters is that you are in agony and need help.

good luck!

I did a quick check because I was confused about the difference as well. Spasms are sudden involuntary muscle contractions. Spasticity is tightness or stiffness caused by muscles continually contracting. So it’s a matter of duration. Whichever it is, an anti-spasmodic sounds necessary.

I have to say the situation sounds horrendous. Are there any friends or relatives who could come round and help you bathe and wash your hair, just until you get something sorted with Social Services? I know it’s not something I would like to ask for help with, but needs must. It’s things like this that make me appreciate my husband!

there are ‘mobile’ hairdressers in most areas who do home visits. for the pain, google cannabis