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new here. need advice

Hi all, i’m a 43 year old female who has suffered with various symptoms over the past 3 years. I was referred to a rheumy who told me i had polymyalgia, after being on steroids for 10 months and symptoms getting worse he then referred me to a neurologist. i went to see her a couple of weeks ago and she suspects MS so sending me for a MRI scan.

what i would like some advice on is my mobility. i cant walk very far without the use of a walking stick not because of balance but because of pain. the more i walk the heavier/weaker my legs become and the more intense the nerve like stabbing pain becomes in my legs and i get very painful muscle tightness in my lower back and have to sit down to relieve it.

does anyone else suffer the same and how do they over come it.

many thanks

hi tam

first up - sorry to hear of your symptoms.

secondly - it won’t always be like this, may be a lot better or may be a bit worse.

i know what you mean about the pain when standing or walking.

make sure that your stick is the correct height for you or you risk your hips going out of alignment.

maybe a better bet would be a rollator with a little seat on it so that you can rest where you are.

once you get a diagnosis you may be offered one of the disease modifying treatments.

you’ll also be allocated a ms nurse and then could be referred to physiotherapy.

don’t succumb to the feelings of sadness. your gp will prescribe an anti depressant.

life doesn’t end with diagnosis, it changes to a greater or lesser extent.

as i like to say “it’s life jim, but not as we know it” for the trekkies out there.

practice your smile because one day you’ll want to smile but it will be rusty!

carole x

Hi Tam and welcome. I agree with all that Carole has said but would like to add one more thing. Ask if you can have physio as I to have trouble walking with the pain but since having Physio it has helped greatly.

Janet

x

Hi Tam and welcome

I use a stick too but don’t walk far. I depend more on my husband now to take me out in the car.

I get pain in my lower back. I have psoriatic arthritis and ms, so I never know which is causing the problem…don’t suppose it matters…pain is pain

Just leaning my upper body forward from a seated position’ while sat well back in a chair sometimes helps me…my thinking is, it’s stretching the muscles that surround the spine. Failing that, good old medication-or both.

Sitting too long brings on the pain fort me too…yah just can’t win can yah

Good luck with the MRI

X

hi i would like to say thankyou to all those who replied. i am on anti depressants (citalopram) and also taking amitriptyline at night and propranolol for tremors.

i went to a mobility shop today with my husband to look at rollotars. it is definitely something we are now looking into. i have had to stop driving a manual car but driving again with an automatic.

what does everyone do about exercise as i have put on so much weight since ive been less active.

looking forward to your replies. i dont feel so alone. i wish i could chat with my uncle who had primary progressive ms but sadly we lost him 2 years ago. RIP uncle dave.

tammie x

Hi Tam, my Physio has given me specific exercises to do,

  1. I stand upright holding onto something that won’t move, then one leg at a time I raise my knee up as far as I can, starting with ten times at first. Then the other leg.

  2. Holding on again I stand on tip toe 10 times again.

  3. Holding on again I raise first one knee then the other ten times again.

I have slowly increased the amount of times I do these exercises.

i have also bought a foot pedal bike and cycle, only thing is I always end up where I started.

A rollator is a brilliant idea, I wouldn’t be without mine.

Hope this helps.

Janet

x

thanks janet. i will give them a go.

tam x

pilates is excellent for ms because it strengthens the core.

find a class near you and have a good talk with the instructor beforehand.

he/she will be able to adapt exercises for everyone.

when i used to go to a class, my instructor would demonstrate the basic exercise then tell us how to make it harder or easier.

carole x