I was diagnosed with primary progressive MS April 2011, but now know I had the symptoms for at least 2 years earlier. I have always been an active person, but since last April I have had to give up looking after my horse and pack in our allotment, not to mention the walking my husband and I used to do.
I see my MS nurse twice a year and my consultant once a year, but I just don’t feel like I get any answers. I have never been on an online forum before and never spoken to other people with MS, but I now feel so frustrated and alone. I have a loving and supportive husband and family, but sometimes its hard for them to understand.
I still work full time, but am in the process of dropping to 4 days a week - who would have the process would be so hard within a big company How does anyone else cope with fatigue? I feel like I’m sleeping my life away. I’m currently on 900mg of gabapentin for the muscle pain, which seems to be working, however this morning I woke to painfull leg spasms and cramps.
I’m sorry if this seems a bit of a rant - just needed to put my thoughts down. Grateful for any replies.
I understand how you feel. It is so so difficult to find useful information. I suffered the exact same frustrations. You don’t know what is out there until you find it, there seems to be no website that provides genuinely useful information.
Well I used to work, stopped in January cos I no longewr had the energy. I setup a website that might just help you here and there. Its really a portal, it points to useful things, facts, information and hopefully this might put your mind at rest.
The website is www.aid4disabled. Its a bit chaotic but hope to reshuffle the cards within the next couple of months. Anyway I hope it helps you to cope a bit more easily
While you are welcome to comment on any section on here you may of noticed there is a ppms section for you very special people and they are always crying out for new playmates so will be very glad you have pulled up a chair.
I and many others on here use Baclofen for spasms/cramps/tightness etc, I would definately ask your gp for something if it becomes more than a one off.
I too have PPMS and unfortunately had to give up work a few years ago.
I have found that the best way to cope with fatigue is that it is vital to get your spasms, bladder etc under control, which of course is much easier said than done!!!
A combination of physio, eating and drinking well and input from the ms nurse and other professionals has helped me. For example I have recently had bladder stones removed which have eased my spasms a little, meaning I have a little more energy to do my physio etc.Still there is not a lot you can do when fatigue hits you.
Good luck, not sure if you have had physio but it can make a difference, the key is being able to carry it on when you are discharged from physio.
You do need to push the ms nurses and other health professionals into getting to the bottom of any problems you have , I try to be a nuisance in a nice way!!
One of the things that should help with your fatigue is getting your pain better controlled, e.g. 900mg of gabapentin is quite a low dose (the max dose is 3600mg a day) so it might be an idea to speak to your nurse about maybe changing that. Other things that can help with fatigue are learning to pace yourself and rest before you get tired, reprioritising things (eating is important, dusting is not!), accepting help and asking for help more often, etc. The other thing is exercise (clinically shown to reduce MS fatigue). There is a booklet on fatigue available to download from here and there’s one on the MS Trust website too - you might get some helpful ideas from them. Just look for publications.
There are meds for fatigue too: amantadine and modafinil, although modafinil can be very hard to get these days. They don’t work for everyone, but can make a big difference for some.
Gabapentin is sometimes prescribed for spasms, but baclofen is more common so it might be a good idea to talk to your MS nurse about it too.
Unfortunately, people with MS have to do most of the running as far as managing their conditions goes: knowing what to ask for is a big part of this. And, generally, if we don’t ask, we don’t get
