Hi, just reaching out for a bit of support/advice.
I am still in limbo with a diagnosis of MS, I have been diagnosed with CIS, uvetis, fatigue and double vision.
I feel that over the last year my symptoms are getting worse and things I used to be able to easily do are not becoming a struggle or I can’t do them at all.
I’m constantly tired and in pain, mainly my lower back and top of my spine, feel off balance and have no co-ordination.
I used to walk 7k a day and now struggling with the 10 minute walk to work as my legs, hips and back ache. When I do push myself to go out for a walk I need to constantly have breaks to sit down and feel ridiculously weak and I’m scared that I’m going to fall over or appear drunk to others due to the off balance sensation. Plus I’m aware when I need to pee, I really need to go so always trying to make sure I’m near a toilet.
I’m always tired, forgetting things and feel like everyday is an effort and waking up not knowing how Im going to feel.
I’ve been recording my symptoms daily as there are loads that I wasn’t even considering as a symptom and due for another MRI in December to see if any more lesions or inflammation has occurred on my brain.
I’m just feeling rusted that I can’t do the things that I used to be able to do and struggling with the constant pain and aches.
Has anyone else been here and has any advice on what can help/how you got through it.
Hi Anna
Many of us here have been in/are in a similar position. I know from experience just how hard it is when you are a very active person and are clobbered with a condition that limits you so much. I was the fittest I have ever been in my life when my journey to an MS dx began - I had qualified as a fitness trainer, was teaching and training 4 - 5 times a week, working full time, keeping the house up together etc. I still manage to train after a fashion 2 times a week - I need to allow time between for recovery; still manage to work full time; husband has to take care of almost everything on the home front.
Its hard, we have to come to terms with the loss of what we had - but we also need to adjust our mindset and start to concentrate on what we can still do.
Are you on any supplements / medication for the pain - I can appreciate the difficulties caused by pain, having been awake most of last night with my leg(s) going into spaspm and burning, and my left arm joining in for the heck of it.
Keeping a symptom diary is good - a great way to keep track of things, and to identify any triggers.
If you haven’t already, get yourself a walking stick - seriously, it was the best thing I did - it feels weird to begin with but is second nature to me now and it makes walking much less stressful and therefore less tiring. Make sure you get advice/check out online how best to use the walking stick.
I am the Queen of Post It Notes at work - have reminders/notifications set up on my phone, a desk diary and pocket diary to keep track of things - also a calender/planner on the wall at home with information on dates for direct debits, appointments etc.
Hi Theresa,
Thank you for your response.
It’s good to hear that other people are feeling the same.
It is challenging juggling everything in the same way we used to. I too work full time in quite a demanding role and have just recently condensed my hours to have a Wednesday off just to make sure I can get through the week a bit more easily.
Love that you are queen of post its too…id be list without them. My desk is littered daily with them so I don’t forget jobs, items shared by my team etc.
I haven’t considered a walking stick… To be honest didn’t want people judging but I do take a camping seat out with me on longer walks. I might look into this though…anything that will help.
The night time pains are horrible, especially when you are already totally knackered and just want to sleep.
I have tried naproxen and amitriptyline but it doesn’t seem to help much but will ask my neurologist if there is anything that might help.
You are totally right about changing mindset, I just need to get into that frame of mind.
Thank you again for sharing your thoughts.
Hi Anna
I was bang into my kickboxing and even tutoring in training, hut ive had to put that aside, including my job, the stress was too much.
There is no right answer, we are all different but the best thing to do is research and find out what works for you.
Apart from ocrevus, from my neurologist, no real help has been given.
I take lots of supplements for fatigue, oxygen therapy for fatigue, urgency, vertigo, dizziness, cog fog.
Exercise is key for mobility, magnesium body spray to calm my shins down at night. You got to research all possibilities for you.
A Dr from the states on youtube has some enlightening ways forward…Aaron Boster.
Also you may be interested in a book called ’ Up the Creek with a Paddle" by Mary Anne Boyle Bradley. Very enlightening.
Another book I read in my early days 2021, a book called " We’re Not Drunk, We Have MS…by Ed Tobias…good luck, with research you can gain some wins…Darren