Walk or rest

Everyday living
1

Hi all, sorry for rant but I want to scream

anyone here have experience of physio what they do in term of walking if you have progressive MS

I’m asking because I’m so confused I’m not able to walk much Neuro says rest and don’t tire your self out save energy etc
Same as MS nurses they advise me to rest don’t over tire
My physio says walk, focus on exercise she described me as can walk upto 200mtr with no problem as I walked from car park to her office even though she could see me limping and shaking
I’ve been requesting walking aids from physio/gp but no luck yet my walking EDDS is 6.0 I refused crutches when I had diagnosis.
I understand physio wants me to rebuild my strength to reable me as I was before but I can not see it happening im house bound and nearly bed bound as doing things drain me out.
I can get tired even when I make plan of doing something as I have cognitive issue aswell even writing this took me hours
In easy words my body is giving away but my physio can not agree on it?
Please share your experience

2

Hi, my physio gave me some exercises to do but I either forget to do them or Im too tired - I know they are for my own good, but cant seem to do them

3

Yeah thems are good but physically going to physio appointment makes me tired lol

4

Hi Sofia1,

I can hear your frustration. It is difficult to balance out the conflicting aspects of these multiple symptoms. Each medical professional is expert in their field, only you are expert in how you feel, so in my opinion you will be the best judge of what is right for you. I do understand that the medics know more which means we should try to follow their advice but ultimately need to work out the balance for ourselves. Without 20/20 hindsight or foresight it is tricky. My neurologist suggested that I should err on the side of overdoing stuff (just a little) so I could recognise the signs or feelings of overdoing it. I still make big mistakes and get the balance wrong on occasion but I am slowly learning.
Good luck
Mick

2 Likes
5

Hi Sofia
I’m trying to manage a similar situation as you.

For me I’ve decided to split things into Beneficial and Necessary

Necessary:
Shopping (use a trolley like a baby walker), Cooking/Kitchen, Showering etc.

Beneficial:
5 mins on exercise bike loosens up the legs and enforces some of the right leg’s rhythm on my dodgy left leg
Stretching & mat work, swimming (soon - awaiting leg infection to go)

Walking for its own sake is on neither list. Nothing destroys me more than walking.

Simply, I will do something necessary and will only do something beneficial if I have anything left in the tank later on after I’ve rested. The way I see if, doing the stretching or mat work conditions me for essential walking without actually walking - if that makes sense? I walk better if the stiff bits have been loosened up.

Would that work for you?

6

Maybe it’s because I’m an American, but I’ve never understood the emphasis you all place on physiotherapy. We don’t really have that over here for MS. As long as you’re mindful of not letting your limbs atrophy, the doctors don’t push you to do anything beyond what you feel like.

My issues with MS began when I was very active and walked several miles of hills a day just for fun. I quickly learned that I couldn’t do that any more, and so I stopped. I saved my energy for the important things.

Like GCCK said, I focus on the necessary things in my life. If there’s energy left over, then I’ll walk through the yard, check my garden, go up or down stairs. It sounds to me like you’re already doing as much walking as you possibly can just getting around for the necessities. Buy yourself a walking stick and shop around for a cheap walker. I see no practical reason to push yourself so hard.

1 Like
7

OK some months back i decided to get active and walk more. I bought a fitbit watch. I pushed myself everyday to do one or two steps more. Long story short.

I woke up thought i had a stroke, ended up in hospital. Scans and MRI to check to see if i had a stroke etc.

CONCLUSION:

The neurolgoist told me it was my MS and I was to STOP PUSHING MYSELF. Basically I had done way too much and pushed myself over the limit.

SEVERAL MONTHS later.
ORTHOTIC appointment

I have an issue with my left foot, my toe by the big toe is always stretching up and sometimes the spasms pull the foot off the floor, which is dangerous for me. I was sent to orthotics from Physio appointment i had, as i walk with my left foot dragging.

CONCLUSION. i was seen by a team, orthotics consist of Physio and neurologist. I had to walk in front of them do all kinds of tests.

The both told me THERE IS NOTHING MORE WE CAN DO. Your doomed ha ha (well they didnt say that i felt it). they couldnt fit me with a brace as you need to wear shoes and my left side was too weak to wear shoes and carry a brace.

So they just said to me, walk as much as you feel you can but DONT OVER DO IT. They also confirmed my visit to ER was down to pushing myself with my MS.

SO what did i take from these two experiences.

Only walk what is necessary do NOT OVER DO IT, rest and then rest some more.

I cant walk far i have 2 rollators one in house and one for my area outside. I walk a little rest a little.

However, since having a kitten its less rest but he is growing now and i can entertain him with a piece of paper for hours lol.

I lost my care worker so have to do more for myself and keep having funny turns, and i feel its because i am back to doing too much. Trying to get anyone to help me is now the priority. But so far no good.

Physio have no idea how to deal with MSERS i dont think so anyway. Its all very well walk more YOU DO IT. when your leg is encased in concrete, you can barely lift your foot off the floor. Even going out on my electric wheelchair is a chore which leaves me exhuasted.

All i will say is you MUST USE SAFETY GEAR. when you walk from car to office, use a rollator, so you can sit down and take a breath. I never understand this 200 metre thing…how long is a piece of string. One day i could possibly walk 200 then the next day i can barely get out of bed.

ah the joys of PPMS and MS in general lol.

8

In my experience, physio is pretty much the only thing that can actually improve stability, although it does need to be focused on areas of muscle weakness.
Sticking to what you can comfortably manage is an awful lot better than doing nothing.
Does MS exile you from the everyday of life? – The MS-Blog (multiple-sclerosis-research.org)

9

My (lovely) rehab specialist neurologist recently saw me (yes, actually in person!) and after much discussion and an examination of my legs, basically said don’t even try to exercise yourself any better. It won’t work. My legs are weaker than ever before, there’s no point in physios trying to make them stronger. I am somewhere between a 7 and 8 on EDSS. I cannot walk at all, in fact can barely stand. But I do manage to transfer alone, even if sometimes I launch myself at my recliner chair / loo / bed! I still manage to wheel myself round the house in a manual chair but need pushing when outside.

He strongly suggested I get a patient turner to help me with transfers (I am reluctant as I don’t want to be so reliant on there being someone with me every time I want to move). Also that I have another SPC. Last time I hated it and asked the urologist to take it out after 6 months. But that was 4 years ago. Things have changed - got worse - since then!

So basically his message was rest. And as the neurological rehab consultant, I do have to take his word for it. It’s not that I’m going to slavishly follow his every suggestion, but that his view that there’s no way to exercise my legs any better is something that I’ve no choice but to accept.

I’ve decided that if I have an SPC, then I can probably afford to retain a little tiny bit of independence for a while longer. So rest plus resist the advice to have a carer help with every transfer.

Without walking aids Sofia, you’ll be unable to walk much I presume. Why not side step the physio and get yourself crutches, a walker, walking poles, a stick even? We don’t require permission to get necessary aids. It’s possible to buy basic walking aids for not much money. If you wait for your physiotherapist to agree to supply them on the NHS, you are possibly going to go backwards rather than forwards with regard to walking.

Sue

2 Likes
10

Good advice Sue.

It sounds rather as if the people on this thread are listening to their own bodies more than to their so-called experts! Common sense prevails :grinning:

In times of health, getting fit meant pushing the boundaries, feeling the burn, no pain - no gain etc. So instinctively we push back. Encumbered with MS, particularly in the more advanced stages, necessitates a counter-intuitive approach. It’s OK to do sensible things, to optimise our health in as many ways as we can: diet, weight, supplements and light exercise as long as it enhances mobility rather than BEING mobility, but anything that threatens the onset of fatigue is a definite no-no.

2 Likes
11

I see a physio once a fortnight (I can’t afford weekly) he helps move my limbs to keep things a bit active so that I can do a bit of exercise :slightly_smiling_face:

12

Oh, I get it for you, and I’m glad you have that. I’ve just seen too many posts from others like Sofia who are being pushed too hard for results that aren’t going to happen. It seems to me that there are too many therapists who don’t know anything about MS. At a certain point, we can’t be treated like standard couch potatoes who want to learn how to run marathons.

3 Likes
13

I see a physio about once every couple of months. She’s great. She comes round, sits in my kitchen with me, drinks a cup of coffee, chats about holidays, life generally and my health (a bit).

It’s no problem, if there’s anything I need in the way of equipment, I can ask her for it. She often forgets, or promises something that’s just impossible to get on the NHS (eg an inflatable lifting device such as those used by paramedics). But I like her.

Sue

1 Like
14

She’s coming on Monday. Looking forward to a bit of chit-chat, some gossip, a small whinge about my bowels! And bladder! And legs! (Etc, etc, generally ‘MS is crap’ type stuff!)

It’s be better if she brought cake or biscuits (or gin) with her, but it works for me.

Sue

2 Likes
15

Totally understand your frustration. Listen to your own body. You know how far you can push yourself and when to cross the line or stay firmly on the side of caution. I do some exercises when I feel able to and don’t beat myself up if I don’t get back to it for a day or five. Getting through just a normal day can be exhausting enough.