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spms how do others cope?

i have had ms for 22 years now,the last 8 i have been spms,and dont really have much of a life,i am in bed most days now,i make myself get up on a morning and can still get a shower and dress myself,and even potter about on a good day,bad days i have no choice but to keep resting up in bed,i cant get out much at all,infact the last time i went out was a few months ago,i can only walk a little round the house,but i still manage to sort the laundry out,every few days,and do light housework,i also do pilates excercises evry few days.and can go on the excercise bike for 5 minutes at a time,i know i should count myself lucky really,but i am becoming depressed more often,these days,and keep saying i would just like to go to sleep and not wake up,i already take an anti depressant because of this,i suppose what i need is to think more positive,but at the moment i just cant,i am so,so worn out with it all,22 years is a long time to be ill,i used to pride myself on being strong,and i always vowed the ms wouldnt get to me, but the truth is,it has now,i know i should be grateful that its only been bad these last 8 years,and i am, but can any of you people with spms advise on what i could do,is CBT any good to help you cope,i really do feel at a loss.

Hiya,

I’ve been SPMS for around 4 years now, having already been diagnosed as RRMS 10 years previously.

Over that time, I’ve tried about 16 prescription medications and 6 alternative therapies - none of which has helped (…but I’ll keep trying until I find something that works)!

I only cope as well as I do thanks to being determined mentally not to let MS have the last laugh.

I used to be most reluctant to accept any help at all in the early days, but as time has gone by I’ve accepted my MS and that I can no longer do what I used to. This ‘acceptance’ of new physical limits can be the hardest bit and take longest to get your head around.

Suddenly accepting help in areas where help was never needed before can initially hurt the pride, but once you do embrace this change it does get easier.

Recognising what parts are working as normal and where allowances need to be made is all part of getting to know your instance of MS and what needs to be adjusted to make life easier.

Hope you soon find things that make life more bearable?

Dom

(PS: I find it quite interesting that the only MS sufferers I’ve encountered so far that I would consider to suffer from depression have been on ‘antidepressants’ ?? Doesn’t convince me of their efficacy, I’m afraid!!)

You do sound ‘down’ - and the anti-depressants do not seem to be working. l know all about SPMS - as l am into my 31 yr.

About 5yrs ago - l found out about LDN - from people on this site - and as there were no other meds in the offing l decided to try it. And it has made a difference to my life. l feel more alert - brighter- less fatigue. More able to cope with ms symptoms.

lts no cure - we know that - but since l have been taking it my spms has certainly not progressed - its much better then it was.Also, and most importantly, your vitB12 could need boosting. l take a daily high dose - does help with energy/memory/ depression.Vitd3 also helps with depression - just google vitamind3 ms and vitamin b12 deficiency ms.

There is not much for us with SPMS - l would like to try Fampyra - the walking drug - see if it helps. Have you heard of this?

l have never been one to take to my bed - hardly sleep at night anyway. My dogs keep me on the go. l take them out every day regarding the weather - me on my Tramper scooter. This morning all the fields around us are being combined [ harvested] so we managed to get through the stubble - dogs loved it and had a good swim in a pond. Going out like this makes me feel ‘normal’ - l can still get the washing in the machine and hang it out - washing basket fits nicely on the seat of my rollator. Sometimes l have to ask for help. l try to finish off the washing for a few minutes in the tumble dryer - and with some ‘tactical folding’ do try not to have much ironing. But l can still strip the beds and make them back up - by sitting down on my rollator - takes me a while. But l do get a good sense of achievement when its done.

F

F,

I’m ‘testing’ Fampyra at the moment (…only been trying it for 5 days so far, so far too early to tell if it will be helpful). The private Neuro (recommended) overseeing this test is far too expensive for me since I stopped working on health grounds - living on benefits and insurance doesn’t go hand-in-hand financially with private healthcare, and NHS doesn’t offer this medication down our way!!

Managed to be ‘immune’ to LDN when I tried it a couple of years ago.

But I’d certainly recommend at least trying Fampyra to see if it makes a difference for you (…I understand it’s expected that only about 35% of people will actually benefit from it).

If I’m convinced that Fampyra is of value to me, I’ll have to get it on private prescription at around £200 per month - it’ll be interesting trying to find that kind of money every month!!

Dom

Dom, Life is not fair - when you consider that 35% can benefit from it - when DMD’s cost thousands and have a 30% success rate. l know Fampyra is not a DMD - but it does help with walking.

There must be something we can do - will the MS Society help.

Lets us know how you get on Dom. Are you on the free months trial?

F

Hi F,

Yep - doing the ‘free’ trial at the moment (…even though the private neuro charged an absolute fortune for a 45-minute consultation to see if I was a suitable candidate).

Having done a fair bit of reading and discussed this medication with GPs and my NHS neuro, there wasn’t much to discuss that I wasn’t already aware of !

I shall certainly post on these boards when the trial is up!!

All the best,

Dom

Dom,

Can the nhs neuro prescribe it - with a private prescription. And is it ‘pills’ or injections. As you can see l do not know much about it.

F

Hi again, F !

I understand that my NHS neuro can’t write ANY prescriptions (…the like of which I’ve never heard before …and I’m not convinced that’s strictly true, but that’s another story ) !! At least I know (from previous experience) that I can get a private prescription issued through the GP’s office if I choose to (…and I might well go down this route in due course).

Fampyra is taken in ‘pill’ form - twice a day, 12 hours apart (…so I’m going with 7am & 7pm).

The pills should be taken on an empty stomach - no eating or drinking for 1 hour before pill, and 2 hours after.

Hope this helps a bit, but please feel free to ask any further questions as they arise - I’ll certainly try to help where I can

Dom