Forum

Relapse and not Improving

Hi,

I was diagnosed in April 2014 with RRMS and the consultant reckons i have had it since 2009

I had a few symptoms and minor problems up to October last year. I went down with a chest infection that triggered a relapse.

The relapse effected my mobility a lot and my balance. I have been off work since October and i have had steriods before christmas but they did nothing for me.

I am still suffering with my mobility and balance and also the fatigue. I have been seeing neuro physio since November and this has helped me alot. But i still can’t walk far due to the pain and Fatigue. I also suffer with my bladder either being over active or wanting to go but can’t.

I started on Tecfidera in January and i have been lucky as i didn’t suffer too much with side effects.

I am currently taking Gabapentin, Duloxitine and Amitriptyline for the pain but they are not really working as by the end of the day the pain is unbearable.

I have just collected my first wheelchair this morning. I know i need it as i can’t walk far but i am finding it hard accepting it in my head. I feel sorry for my wife and son’s having to push me around.They have all been great with me and nothing seems a problem to them.

I am getting a bit concerned as i have been off work for nearly 7 months and i am not improving.

As i am now i would never manage work.

Is there still a chance i could improve ?

Any advice would be Appreciated.

Thanks

Hi Irons

There’s always hope.

I know exactly how you feel about the wheelchair. I am doing everything possible to avoid it but know it will come in soon. I don’t think we are helping anyone by struggling on.

I am sure your wife and son are happy to push you along. They are probably happy that you will be safe and able to go out and about with them.

Have you tried Baclofen to help with your pain? It helps the pain I get in my legs and back caused by spasms.

If you have RRMS there is always the chance that you could be thrown into remission and things improve for a while. I had to take ill health retirement in 2012 so can’t offer any advice on work as I had to give up. It wasn’t too difficult a process for me as I worked for the NHS.

It sounds as if you are loved very much by your wife and son and I am sure they like to make you happy by helping you.

Take care Irons and I hope things get better for you.

Shazzie x

hi irons

shazzie is right. there is always hope.

when your remission finally arrives you will then know the extent of the damage caused by this relapse.

enjoy getting out and about in your wheelchair, although you don’t like it.

you seem to be suffering from a lot of pain.

have you considered LDN?

you would have to get it on private prescription but it’s only about £15 per month.

sativex helps a lot of people with pain from spasms, it may be tricky to get from your gp though.

however some enlightened neuros actually prescribe it. ask about it, you might be lucky.

you’ve probably heard me banging on about mindfulness meditation before.

it’s really worthwhile learning how to do it as it helps with pain management and keeps your mind calm.

one aspect of mindfulness is to practise gratitude.

it’s easy to think of all the things that you are grateful for, such as your loving family.

but also could include birdsong in the morning, a beautiful sky - anything that floats your boat.

keep your hope alive!

hope that remission comes soon.

wishing you love, peace and relief from pain

carole xx

Thanks for the kind replies Shazzie & Carole

I have Googled your suggestions for the pain and will ask my Consultant about them when i see him in fortnight.

How do i know when i am in remission ?

As i feel ok apart from the pain and sensations and mobility problems. I am begining to think that the damage has been done and it’s a case of trying to control the pain and then just trying to make good of life.The fatigue is hard as something easy to do just wipes me out. It’s worse than doing a night shift.

My ms nurse has been brilliant with everything but all she can say is that she hopes for some improvement.

Will give the wheelchair a go over the weekend if the sunshines.

Thanks