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Pain management

Hello all

I was diagnosed with Relapsing/remitting MS around 5 years ago after going temporarily blind…with Neuritis…(scary stuff)

I have since made a good and steady recovery and have 90 percent of my sight back and have been told that as there are no additional lesions appearing on my MRI scans I have been almost signed off of the program…with only annual visits.

This is great for me as it affects people so badly, I do feel I got off lightly.

However I experience severe muscular and bone pain, on a regular basis. Not in the joints tho , almost like it’s inside the bones or in the ‘meat’ of the muscles… it’s in my arms, legs and neck and I get some really nasty headaches which start in the eye that was most affected by the neuritis and spread across to fill my head.

My Support nurse has told me that these symptoms are not related to MS

and therefore cannot recommend any form of therapy/pain relief other than Paracetamol which doesn’t really work…

Does anyone else experience this kind of pain? am I being a hypochondriac? the pain is genuine and I don’t let it interfere with life just pause til it’s gone however it is really tiring sometimes, is this linked to MS? any help would be appreciated .

1 Like

hi nick

i’m nearly 60 and put a lot of my aches and pains down to old age and decrepitude.

i was having a stiff neck almost every day and it was driving me mad.

i bought a wheat pack which you pop in the microwave for 3 minutes and it fits around the neck.

sometimes i feel bone ache which also feels neuropathic.

the headaches could be seen as ms related in my opinion, seeing that they followed optic neuritis.

CBD oil is good.

carole x

Hello Nick

Your ‘support’ nurse doesn’t sound very supportive. It sounds like it could be MS pain to me. Given that we are all so different, there’s no telling that while person A has headaches that are MS related, person B’s are necessarily the same, or vice versa. Any pain that you have could be MS related. If an MS specialist neurologist said the pain you have is due to something different, then maybe believe that, but your nurse sounds like s/he is guessing.

And I don’t want to be a doom monger, but while you feel you’ve ‘got off lightly’, I spent the first 10 years with MS telling people I had been lucky as I wasn’t badly affected. 21 years into my MS journey, I no longer say that.

If you’re not on a DMD and can get on one, do consider it Nick. You never know when a big nasty relapse is round the corner. I suffered side effects from 3 different DMDs that meant I couldn’t take any.

I really hope you stay lucky and as relapse/symptom free as possible.

Sue

Hi Nick, I always use the MS Trust for advice, having said that, I have my MS Nurse calling next week to give advice about pain management.

I’ll let you know how I get on.

https://www.mstrust.org.uk/search/pain%20management

My doctors all assured me it is unrelated to MS however have not provided me with any alternative explanation.

At my last MOT I had normal blood pressure and good blood sugar. I also take heart medication as I developed swine flu several years back which nearly killed me…for regulating my heart beat (ectopic beating as a result)

Again it doesn’t interfere too much and I cant see how that could be related to the muscle and head pain.

Thanks for your comments I dont think I am going mad over this anymore

One day I’ll know

and will continue looking

Good luck to all :slight_smile: