Hey all , I try to keep positive i try not to moan but i am at the point I dont know how to handle things anymore and want to know if anybody else feels the way i do. Of course relapses are a nightmare there awful and scary but at the moment its the daily things that are really getting me down, the vibrating legs that have stayed with me the numbness down my left side that comes and goes out of nowhere my rubbish vision but most of all the pain 
So some say from what i have read ms doesnt cause much pain well what is going on then if this is true for most ? there is not a single day im not in pain shooting pains , the cramps that happen in my whole body there is always pain somewhere i cant remember the last day i wasnt in pain i would do anything for a single day without pain and i keep waiting and waiting for that day but it never happens. Everything i want to do is ruined i would like a baby but know i couldnt handle it the way i am now , I want to go back to work and stop struggling on just hubbys wage but i know i physicaly couldnt . I want to be able to go in the sun with out my body going mad in the heat. I want to live not survive each day. im sick of living this way. sorry ive gone anon on this but i know im probably coming across like i real moaner but i just cant keep putting on that brave face anymore when in reality im falling to bits , thanks xxx
Oh love! You`re not a moaner…you just need to find some relief from the awful pain.
You don`t say if you are on any medication , but this is what I am on and how it helps.
amitriptyline…it is a fantastic nerve pain blocker…I take 75mg a day…don`t be alarmed if you hear/read it is an anti-depressant…yes, it is used for that too.
I went on it in 2000. I saw a locum at my GPs and I said, Ok, I am disabled, ok I may never get back to what I was, but do I HAVE to be in so much pain? The locum listened to me and I felt he really cared. He started me off with just 25mg and it had to be increased to 100mg, before it zapped the intense pain. This pain was in the back of my thighs and bum cheeks. It was like sitting on broken, jagged glass! It made me so irritable and miserable.
baclofen…this is given to reduce/ease pain from spasms and spasticity…the pains were shooting, really sharp ones.
This drug has to be taken with care, as too much can cause weakness eg falls. Just about everyone has to find their own level. I take 30mg at night. I still get spasms in my feet mostly, but not like it was.
There are other drugs which someone else might tell you about.
I do hope you find some relief soon, love.
luv Pollx
Hello anon,
As well as the drugs mentioned above try gabapentin.
It might be worth giving LDN a go. Some people find it is very useful, helps me with bladder and fatigue issues.
I think most of us are aware all the time that we have MS, there is always something to remind you - try to find something that takes your mind off the problem. Even doing a big jigsaw 'cos you have to concentrate.
I run a website and that is a big-big help. Its called www.aid4disabled.com - take a look, maybe write an article for me
Living for the now and keeping busy are the best ways to live with SPMS.
Remember you are not alone.
Good luck,
Patrick
Hi anon, just had a little giggle at your post i am sorry. Not that i have no sympathy but your post is exactly what i would write myself!
I have myself not had a day free from pain and totally understand how you feel, as Poll says you can get all
sorts of pain meds. I am un dx as yet and have lots of pain killers but i must be hyper sensitive as they knock me for six so only take them when i reach breaking point.
My worst is nerve pain down my neck into my shoulder and cramp in my feet.
Hope you get some relief soon
Sonia x
Hi Anon,
Firstly you are not moaning you are just saying how it is, and that is why we are here. I am on gabapentin for neuropathic pain which was and still is with me every day. But it is bareable with gabapentin, sharp pains, my goodness sounds familiar, we all tend to have pain somewhere or other. Don’t give up or give in to it, having said that if you need to take a rest listen to your body and take a rest. You have to learn to pace yourself, do a little, rest, do a bit more then rest. Once you learn tp accept your body you will cope with it all, but don’t try doing everything in one go. Fatigue is one of the worst symptoms so go with it not against it and you’ll find the pain may not be quite so bad. Hope you get a dx soon and some pain relief with it. Have you asked your doctor for something as they can give you drugs to help.
Wishing you good luck
Janet
x
Hi anon
I know there’s this British assumption that we should have a stiff upper lip at all times, and never moan. This is utter rubbish. As you’ve written, you (and we) have got a lot to moan about. It’s perfectly normal to let off some steam about what you feel, and it’s much better out than keeping it all bottled up.
As others have said, there are different druhs that can help with pain. Mindfulness can also be used for pain management (do a google search for mindfulness & pain management and you’ll find plenty of things). There’s also help for the other things too. Access to Work is a DWP scheme to help us with disabilities to work (again, do a google search to find out the different ways they can provide support). And if you contact your social services department, you may qualify for support for things like cleaning your home & doing the shopping, which could help make having a baby a bit easier.
And it may help to think of the things you can be thankful for, and to find little things that you can enjoy even as you are now - reading a good book, having a cuppa with a friend, getting out into the countryside, doing something artistic… you know yourself best.
Dan
hi anon,
i’d just like to add to the above that some of the pain meds make you very sleepy. amitryptiline does this but i take it at bedtime and it really relaxes me and helps me get to sleep.
my problem is that the sleep doesnt last long enough. my badly behaved bladder gets me up. i get too warm and often need to come down and stand on the quarry tiles in bare feet.
my pain is in my legs and i have found that a good sports massage helps. i can’t afford it every week but would rather do without a few luxuries and get a massage.
i don’t know how long you have been diagnosed but you will get to know this new body and find ways to deal with it all.
now be kind to yourself. its ok to moan but dont let it become a total depression. again there are some good meds.
my gp put me on citalopram just before diagnosis. i came off it after 2 years but its good to know that i could always start taking it again if needed.
if you are like i was, anti depressants were always things that other people needed. its hard to accept that you need them yourself but it sounds as if you do.
a good strategy that i first took up at age 22 (was in a job that i hated) is to find 3 things to make you smile. i used to do this on the way to work, looking through the window of the bus. it could be a child that make you smile or an animal, or anything really - i remember an old guy sitting on his sofa on the pavement! it did my workmates a favour by me walking in smiling instead of frowning.
as you can see, you’re not alone and there is a whole army of us here to send you hugs and support.
carole xxxxxxxxxxx