Forum

poor mobility

hi everybody i hope you dont mind me coming back to this forum after 2/3 years! i have been on the forum many times reading all your messages sometimes crying and occasionally smiling and i feel that now is the right time for me to join you all my condition has started to decline and would like some support at times
i am not on any meds at mo having just come off fampyra
can anybody with ppms suggest anything i could take as my legs and feet are really stiff and mobility dreadful

kind regards
Lozzie

Hi Lizzie

Welcome to the forum, lovely friendly people here, always willing to listen and offer advice where they can.

I take baclofen for spasms and amitriptyline for neuropathic pain, and whilst they help, they do not stop it completely.

Maybe worth having a word with your ms nurse (if you have one) or your gp, to see if they can help with medication or refer you to physio.

Hope to see you on the forum again, take care.

Pam x

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Greetings Lozzie,

I struggle with similar problems. I have experimented with lots of different things. I’ll bundle a few, to see if they give you, or anyone interested, some ideas for relief.

A vibrating massager is a handy gadget for stimulating muscles. Vitamin D3 5000iu for a natural topper on the bodies needs. A garden hose on jet setting with cold to invigorate & get circulation going. Citrus fruits, cashew nuts, oily fish for Omega 3 & Heinz 5 beans. Eating good healthy foods in general seems to work for me. Mushrooms, eggs, steamed Broccoli, Fizzy cold Ginger Beer. Meditation & deep undisturbed sleep. Comedy programmes for the much needed laughing & smiles. :slight_smile:

Once the food & waking up of the body has happened. Relaxing exercises & a cold spray mist gun to keep the bodies temperature down. Having hobbies to keep the mind active on positive feel good things. Sitting in a sunny garden with nature or getting out to a Park is good. Being happy & avoiding the wrong vibrations.

I hope something I’ve mentioned inspires & helps you feel better. Take care out there.

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Hi Lozzie I have had PPMS for over twenty years and am now in a wheelchair, during that time I have tried all manner of medications and I recomend you speak to doctor physio or MS nurse. We all respond differently and I am awaiting trials for a Baclofen Pump as my latest in my battle against my MS. Good luck. and Welcome

keep smiling it confuses people.

Don

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Hello Lozzie,

I have a scooter, a wheelchair and a rollator. It helps the spirit to know that even if I don’t get out much, I can get out if I want to. Obviously I don’t know what stage you’re at but the scooter definitely gives me more independence.

Hobbies and some daily pleasures help. I do the Times crossword every day; it’s taken me years to get to this level and I have aspirations of entering the annual competition. It may never happen but the thought drives me on sufficiently to look forward to something. I also play scrabble on the tablet against the computer-it helps a lot.

Best wishes, Steve.

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Hi Lozzie

Do you have a partner/carer/friend who can give you regular daily muscle stretches? My missus stretches my calves and hams every morning, and without this I would struggle to get up onto the rotastand to transfer to the wheelchair. Also physioherapy gave me a t-shaped bean bag type thing which I use for a variety of exercises: lower leg lifts, bridging, knee clenching etc. Alll good for the leg muscles which I can use, and for my core muscles.

My carer does the stretches for me on the two days a week that she comes in. I’ve alays found this sort of mind numbing exercise easier to do with someone to encourage me.

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hello

sorry late reply have just come through a rough few days

i do have a wonderful husband who is very very supportive he wants me to ask you

those daily muscle stretches how many calf and ham stretches please?

i do have a physio calling in at the moment i will mention the t shaped bean bag type to her and hopefully she can get me one

thank u kevadams for your help

lozzie

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Lozzie I do about ten of each excersise most days, today was a miss beccause Heather was in rush to meet daughter but I have never been to hard and fast on things. We also have a huge ball about ten quid from Argos Heather huts my ankles on it and bends my legs towards me it makes it so much easier. I have hand rails in bathroom and do a few squat type things when in there gor a shower wash etc. Remember you can exhaust yourself so go steady.

Don

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Well, I’m not a physio, so don’t take my word for any of this, but…

Don’t confuse stretches with muscle exercises. My carer calls stretches ‘your exercises’ . They’re not, they simply stretch out muscles which have become stiff and contracted by lack of use, and should be done carefully and slowly while the muscles extend. Hold for 30 seconds or so. Repeat if required.

‘Exercises’ is where you make the muscles work as best you can, and repeat as many times as you think fit. You don’t want to overdo it, and leave yourself exhausted. Some muscles may not appear to work at all, but even trying to work them is working them.

My main stretches are:

calf muscles- I lie flat and Ruth pushes the balls of my my feet so that my heels are being pulled away from my knees.

hams- similar, but by lifting the leg of the bed I can feel my hamstring start stretching out, and my knee drops visibly.

we have a whole variety of other stretches, and a range of exercises, taught by the physio dept at hospital. Glad you’re getting seen by a physio.

good luck!

Kev x

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hello pam

thanks for your reply

i have been told by my ms nurse to start on 2mg of tizanidine

have you ever tried this medication?

kind regards

lozzie

thanks don i shall start the exercises you have mentioned and will check out the ball from argos

i have hand rails all over the house very very useful i find!!!

my physio has also given me a ms exercise dvd which i shall watch with her next week when she visits have you seen this?

chin up

lozzie

Hi Lozzie

No, never tried that, hope it helps you. I don’t seem to tolerate medication very well, so whilst what I take does not stop it completely, as I am now used to those, I am reluctant to try something else.

If they stop doing anything, I think I would try something else, but feel at the moment for me its best not to “rock the boat”.

HHave a good weekend.

Pam x

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