Forum

trying to stay positive

hey there, i’m 36 years old and recently diagnosed with primary progressive MS.

i have problems with constant pins and needles in my legs, am still able to walk but sometimes can become a little painful.

my biggest problem is the fatigue- it seems to hit me like a brick wall. i have 2 kids aged 4 and 5 so pretty active little monkeys and at times i just don’t have the energy to keep up.

if anyone has any advice and how to help combat fatigue then i’m all ears.

xx

Hi Stef… can’t imagine how you cope with two young children and this level of fatigue!!!

For me it is my worst symptom (although it’s so hard to list symptoms in order of ‘best’ or ‘worst’ as different every day).

The only way I manage it is by getting lots of rest when I need it. I’ve sort of learned to ‘listen’ to my body… so I can generally tell when my fatigue is going to be bad. Buzzing, vibrating feeling is worse on those day and tinnitus that I suffer… MS related… is worse.

BUT in your situation with young kiddies it’s much harder.

I would say my top tips are:

  1. Rest… whenever and whever you can. If you have trouble sleeping, ask GP for something to help.

  2. Pace yourself… do one task, rest, then another, rest, and so on.

  3. Lower your standards… in other words only do what is essential in house. Remember, the housework police will not arrest you… and kids don’t notice mess. If other people don’t like it, let them roll their sleeves up and do it for you!

  4. Don’t skip meals ever. Remember food is fuel for your body… so fatigue is much much worse when you are hungry.

  5. Eat healthy. Again, if food is fuel then you want to use the best fuel possible.

  6. Ask for help from whoever you can… friends, relatives, neighbours, co-workers… explain how bad the fatigue is and ask for help.

  7. Exercise can help. This is tricky as for us with PPMS exercise can completely wipe us out. So just try what you can manage. If still able to walk, try to walk a bit every day to keep the muscles going. Try stretching and moving your body every day. Do what you can and don’t feel guilty if it’s not much… which leads us onto TOP TIP…

  8. Drop the guilt… we have all grown up in a society that praises effort and ambition and people who ‘overcome’ illness, so we naturally feel guilty when we are unable to work, keep a house clean, go running every morning, compete in Paralympics… etc etc etc. This is the hardest but most important tip… it’s a case of changing your whole attitude and accepting that none of it applies when you are dealing with chronic condition like MS. Change the rules. Reinvent yourself. Learn to say ‘no’. Live your life one day at a time.

Hope this helps… it helped me writing it out like that. It’s all too easy to forget.

Pat x

Thanx Pat,

good advice, has made me feel a lot better. and i may even throw my duster out the window!!

have to admit that guilt is probably the worst- i kinda feel lazy so i need to change my attitude.

only just joined this forum and am feeling better already. :slight_smile:

cheers.

stef x

Oh didn’t realise you were new Stef so a BIG welcome to you

Lots of fun and support on here and you are now formally a Golden Girl !

Pat x

Hi Stef and welcome, Just wanted to reiterate Pat’s wonderful advice. I have four boys and find it hard to keep up. The standards in the house have dropped dramatically! I still feel guilty but I’m getting over that, lol! Make sure you rest whenever you can! Unfortunately my poor hubby has had to take on so much extra work but, bless him, he is not a natural when it comes to cleaning! Throw old standards out the window. Live with what you can manage. In the meantime, take care and look after yourself! Teresa xx

Welcome from me aswell.

Pat knows what she is talking about so good advice there.

How you manage with littleuns I will never know but if kids grow up feeling safe and loved thats all they need.

As someone put on here…have you ever seen I wish I’d done more housework on a headstone!!!

Focus on what you can do and leave what you cant

Take care

Pip

thanx everyone-definately feelin better already.

kids are pretty good really and i have a supportive husband bless who puts up with all my mini temper tantrums.

just been reading that u can get some medication for fatigue so me thinks i may need to a trip to my GP as it definately seems to be getting worse. i work full time and have supportive team there but still feel bad if i need to go home because i’m ’ tired ’ i get a little paranoid about what people think!

somethin i need to overcome! i always feel like everythin has to be just right so that people can see i’m managing fine and coping.like pat said seems to be the typical british way!

i’m realising i need to think about myself a little bit more without thinking i’m being selfish.

sorry to rant on. it’s jst gud to get it outta ur system sometimes.

stef x

In addition to the excellent advice so far, I would suggest taking a look at the unapproved ldn and see if you think it can help.

www.ldnresearchtrust.org

Hi I hope you don’t mind me asking but had you been rrms before hand or did You go straight to ppms? If ppms from the off what symptoms did you have That led to this? I’m a limbo lander awaiting MS specialist as neuro was unsure. Thanks in advance Sonia x P.S sorry about your diagnosis

Hi Sonia, realise question isn’t for me… but just want to tell you that PPMS always starts off as PPMS… never any relapses or remissions.

RRMS can somtimes become SPMS… Secondary Progressive MS but it never ever becomes PPMS.

Most of us start fairly slowly, fatigue, pins and needles, bladder etc etc and then progresses. But as with all MS it is different for everyone and some people have aggressive symptoms from the start… but main thing is, although it might vary day by day, there is never a remission and always some level of progression.

Hope this answers your questions,

Pat x

Thanks Pat, i’m trying to find out a few different things as if you look on my post on new diag/ before diag

i have asked for opinions on 4 white spots in a space of 11 months. Feels free to comment.

Tia sonia x

Yes, a bit young for PPMS but not the other forms of this disease. And I wish people wouldn’t plug drugs like LDN, which neurologists don’t prescribe for PPMS sufferers! Believe me I’ve asked about it.

My open minded GP has prescribed ldn on the NHS for over eight years now, with full consent from my Neuro and I must say I prefer it to deterioration, but each to their own.