MS Society UK | Forum

What’s everyone else’s pain like?

Hello everyone,

So a little bit about my journey so far (it’s a short ish one). 25 year-old female.

Middle of April 2021 I had blurred vision and headache which lead to me going to an eye hospital, they did tests CT and all was clear. I then went on for them to request an emergency MRI within the week as she could see abormal cells. MRI came back with multiple leisons. Consultant at eye hospital said no more about these abnormal cells (which I find off but going off topic a bit). During the waiting time for my MRI I had veritgo which lasted for about 2 months (eye sight and headache too) I was then told I had CIS but no ON (optic neuritis). I then went on to have all these weird things happen to my body, tingling, pain, burning feet, dizziness, sickness, balance problems, memory trouble which calmed down in end of July ish.

I saw my Neurologist end of September and he said he couldn’t confirm MS yet As there wasn’t enough to be 100% sure that I will go on to get MS. He ordered another MRI of the head with contrast which i had 12-14 days ago. Around 3-4 days before MRI I have had this awful headache again, on and off blurred vision, pain that moves throughout the body, burning feet, balance problems and tingling. I contacted my Neurologist who said MRI came back with no new leisons so my symptoms are probably not ms rated (confused really? So what are they?), I then asked about pain relief as this pain can take me off my feet and the balance is obviously making me unsteady to which he replied no pain relief just short walks? Now that’s the bit I am struggling with… Alot! I know they like to be 100% sure before giving out MS DMD’s but I thought they’d be willing to help with pain control at least?

Does anyone have any advice? Any similar story? How long do I need to be in pain before someone helps?

Hi Beth. I was only diagnosed last year. I also started to worry about the various types of pain I was experiencing.
I get such a stabbing pain behind my left eye, then a headache. It feels like a million ants are going crazy in my right foot, and on occasions have hand & hip pain (altho my hip pain is probably connected to my foot drop).
I didnt want to start taking buckets of painkillers as was starting to use alot of paracetamol with alternative ibuprofen. So I started to do a bit of research.
I then came across the Overcoming MS site and the diet they recommended. OMG! The difference a dairy free diet is now making to my pain levels is astounding! There is a scientific background to it, and of course we’re all different.
I dont follow the actual diet strictly but have eliminated ALL dairy and increased my intake of plant based foods. The only meat I eat is chicken/turkey.
My pain has reduced significantly.
Have a look - OMS diet.
Let me know how you get on.
Good luck :+1:

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Hi
I was diagnosed 17 years ago and although i dont suffer major relapses i do go through long periods of pain, particularly my back & chest. As far as i know i do eventually fall asleep at night but wake in the morning with total body pain from the pressure of lying all night! I have tried memory form, lying on additional duvets but doesnt last!
The consultant i had constantly told me there was no pain relief that would help & that headaches i have were not linked to my ms but no suggestion what else they would be. Not sure where to seek help!

@Mckaymafia I’m sorry to read what you’re going through with long periods of pain.

Don’t take your consultants word on it that there’s no pain relief he can prescribe, that’s total BS!

Neuropathic pain is different from normal pain, and normal painkillers (aspirin, paracetamol, ibuprofen etc) won’t help. They normally prescribe Gabapentin, Pregabalin, Amitriptyline, for Neuropathic pain. It’s a bit trial and error in getting the dosage right, as they are all quite sedating (for me at least!) but if you take them in the evening, it should also help with sleep.

Ask about them, it’s worth a go.

Hi, I get terrible nerve pain wouldn’t be able to sleep if I didn’t take cannabis it really should be legalized

and cannabis balm is amazing for headaches within seconds the headaches go

Hi Beth,
Sorry you’re struggling with a diagnosis. I was first diagnosed with a CIS 16 years ago and the rules for confirming MS were different then to nowadays.
But looking at the site below if you can get a lumbar puncture it may indicate oncological bands indicating MS, but after 2 attacks my lumbar puncture was negative but I was still diagnosed with MS due to further lesions on my 2nd MRI. It must be very frustrating for you.

https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Clinically-Isolated-Syndrome-(CIS)

My 2nd relapse gave me sharp head pains which affected my balance for around 10 mins or so then I was fine again. Is this similar to your balance issues?
Take care
Sharon