MS and Pain

Everyday living
1

Hi,

I have recently been diagnosed as 98% having primary progressive MS. My question is probably very silly really but I wondered doesn’t anyone get a lot of pain?

I have a whole numb left side and optic neuritis at the moment and usually get pins and needles or tingling. But recently I have been getting horrendous cramps and stabbing pains. Aswell as horrific back pain and headaches. I also have terrible constipation sorry for the overshare

So I wondered is this a typical symptom or completely unrelated.

I don’t want to keep running to and from the GP as the neurologist said to wait for any help until after last test. But have another 7wks which is a long time in pain.

What do you think MS or unrelated? I have elisions in both brain and spinal cord if that makes a difference?

Thank you to anyone taking the time to read and reply

2

Hi Sammy

Sorry to hear of your diagnosis.

MS can cause constipation which can lead to back pain, even a little constipation can cause back pain. Also certain medications can cause constipation which can lead to back pain. MS itself can cause back pain.

So it could be a combination of factors. Are you drinking enough water to keep hydrated ? and how’s your diet regarding fibre and enough fruit and vegetables?

Can I ask what medications are you taking?

1 Like
3

Hi i get the cramps and stabbing pains in my left side which is more affected. Some stabbing pains are horrendous and make me jump. You should join us on the PPMS thread lots of people there have pain like you describe. Constipation is sadly part of MS, so try and drink more water, and eat more fibre in your diet. x

4

sorry and yes backache all the time i use a heat pad.

5

Thank you all so much for taking the time to reply. I will pop over to the other group and get some information.

6

hi sammy

ask for something to help with spasms/cramps.

a muscle relaxant maybe such as baclofen.

constipation is horrible, lactulose does the trick for me.

carole x

1 Like
7

Hi Sammy, well awake with pain so settling in for a night’s reading, lots of tea, some pain killers and a big swearing session!

8

Hi Sammy,

I is not a sillhy question. You are new to this and need to learn. Also don’t worry about the over share. Most of us know what constipation feels like!

I have pain 24 hours a day, like a lot of us. Completely numb feet and lower legs which makes walking difficult (use a wheelchair sometimes.) My feet are horrendously painful (which I can feel through the numbness - bizarre. It is the pain and stiffness which makes wlaking so difficult. MS Hug, pain in my neck arms, hands. Pain is real thing for lots of us.

Hope you get some relief soon.

Always ask on here. There is always someone with some good advice that you may not have thought about yourself.

God luck,

Anne x

9

There are a number of pain killers/relief available, talk to your Neurologist,

Neurontin/Gabapentin Nortriptolyne/Amotriptolyne and others I can’t remember.

And an illegal one I can’t mention.

Ronin

10

The only mixture of things that helps my pain and I don’t do this all the time, has to be the right day and feeling that it is right to do it, first stretching at home very slowly, slow breathing, then drive for a steam room and sauna session. They have good showers which help my back (and the stupid pins and needles I sometimes feel in my spine), then rub off dry with a hard towel, oil skin, moisturise on top, put comfy warm clothes on, go home, drink tea, take painkillers and stay in bed nice and warm. The whole thing is exhausting and I am wiped out for a day after but and it is a big but, the pain goes away for a short while and my muscles feel better.

Doesn’t work for everyone, I am a weirdo where the cold hurts me and the heat helps me.

If the pain is bad and I wake up and have to swear a lot, sometimes the only other alternative is to adapt for that day, have a nice bath, oil the skin again, rub and wrap up hurting muscles, fresh jim jams, back to bed for some deep breathing and relaxation and a good dose of three series of Bottom on netflix.

The odd thing about all of this is that everything is random. Don’t know if it is the same for everyone but trying to figure it out in my early days nearly sent me west. Each day is different, hard to plan, pain is random, can wake up one day feeling marvellous for no reason then by tea time or the next day feel like I’ve been smacked with a big wet fish! It is hard not to rush round or panic about each thing happening. Make a diary over a six week period. Then start another one for six weeks. It gives you a sort of long line of changes, good days, bad days, poorly days, achieving days. Also add your diet and any exercise in there including breathing or relaxation if you do any. You might look back in a while and see that good days follow certain things. It is also your evidence if you need to take your symptoms to the Doctor in the future.

The social service lady advised me on sitting in a good chair, with a rising thingy or finding a normal chair and setting it correctly for my 5 foot 2 and a fag end small frame. She said this is key to keeping pain at bay if possible. Hope this helps.