holwilkinson 06/04/18
Last reply 2 months ago
Physical activity after a relapse

Hi, my names Holly. I’m a physiotherapist working in the NHS treating people with Multiple Sclerosis. We’re looking at improving the information we offer people on physical activity and exercise following an MS relapse. We’re interested in hearing about your experience with exercise or physical activity following a relapse, any advice you’ve been given and whether this was helpful or not.
Thanks in advance for any information you can share.

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grandma
2 months ago

Well Holly you can’t be working in Stoke-on-Trent because I have had 25 years of RRMS average of 2 relapses a year and never seen a physiotherapist, never been referred to one, but there again your face has to fit in this city with neurologists and the whole ms team so perhaps you might have better luck with people whose faces “fit”


look
2 months ago

Hi Holly,
I had physiotherapy in Aberdeen, referred by my GP and MS Clinic in 2015 after a horrible relapse. I did have to wait a few weeks but they were very good and I came away with some gentle movements and stretches to carry on beyond the relapse period. The only negative thing was that I had to drive a 50 mile round trip to get there and be once I had improved, the targeted MS group once a week lunchtime excercise (Pilates) session was unfortunately just impossible for me to get to plus I am super-exhausted at that time in the day! I found the Occupational Therapy sessions surprisingly helpful and I still use the info I came away with 3 years on. Hope that helps.


vixen
2 months ago

Hello Holly,

I was diagnosed last year and had physio as a result of stuff around pelvis and joints showing up on an MRI, so not specifically for MS. However, as I’d been diagnosed by then the guy gave me some really valuable strengthening exercised.

I am now going to seek referral to a physio as I feel I’m in a bit of a relapse again. I know for a fact though that I will have to wait, which is a pain. It’s a great ide that you’re doing this research, good luck


beefree
2 months ago

Hi Holly,

I asked my MS nurse about physiotherapy while recovering from an attack. She said that the waiting times were such that I’d be better paying for it myself. So, not very helpful.

On exercise, I haven’t been given information directly. Knowledge is accessible online, from forums such as this, which are very helpful; but piecing it together, while getting to the bottom of other higher priorities, came at the cost of timeliness.

I’m now beginning to change my weekly routine to incorporate a range of exercise that should help manage my MS e.g. yoga, running, cycling, strength, but it’s eight months since my CIS diagnosis.

At the time, I assumed that anything other than stretching and yoga would prolong recovery. It was only when I last spoke to my neurologist, who encouraged me to maintain regular exercise, that I realised it would be beneficial. This was helpful but not necessarily timely.

Time with our neurologists is scarce and precious, I don’t know that exercise advice would be a priority or that it should wait for this window. An information leaflet, and systematic process for distributing it at the time of a demyelination episode or relapse, would be helpful.

I would have found it useful to know: why think about exercise when managing a relapse? when is a return to exercise recommended for who? how much exercise? what type of exercise? what to expect? what are the indicators to increase/reduce exercise? e.g. what if you experience fatigue? what are the zero cost options? how and when to transition into a normal exercise routine? what support exists to access exercise and physiotherapy services via the NHS? Who is eligible and what is the criteria? Who is accountable?

I would have also welcomed information on exercises relevant for specific symptoms. I had optic neuritis and wanted to know whether there were any appropriate eye exercises. I also wanted to know if there were hand exercises to maintain dexterity. The symptom that lasted the longest was loss of sensation in my left hand. Today I watched a fantastic vlog on home-based sensory therapy by @tishtash. I would have benefited from this kind of practical advice while in recovery. See the vlog here: https://youtu.be/MrmxBSXZjcM

Hope this helps, good luck with it.


holwilkinson
2 months ago

Thank you for all your comments so far. I’m sorry to hear that you haven’t been able to access physiotherapy ‘grandma’.
I mentioned that I’m a physiotherapist because I wanted you to know I’m a health care professional but I’m really interested to hear your experience of returning to any type of physical activity following a relapse, not just exercise that a physiotherapist has given you. How did you feel during the relapse? Where you able to continue doing some physical activity (this could be walking places, climbing stairs house work or more traditional types of exercise like going to the gym, pilates classes or cycling)?
‘Look’ you mention that the gentle movement and stretches were helpful. Was that what you felt able to do at the time or did you do other forms of physical activity?
Vixen it was interesting to hear you found strengthening exercises helpful. Have you been able to continue these exercise during your current relapse or are they too difficult?
The questions you ask ‘Beefree’ are really interesting and at the moment there isn’t the research to answer them all. That’s why I’m interested in hearing your views. I’m planning to do some research into this.
Many thanks for your help.


potter
2 months ago

My neuro sent me to a physical therapist when I was first diagnosed. I was having terrible leg cramps, she gave me exercises for that and some that she thought would help keep me walking. I am 65 and still walking, not as far as I would like but still walking. I went to my foot doctor with a heel problem, I have had problems with my feet my whole life. He sent me to a physical therapist for that and anything else that could help. I have about a hours worth of stretches I try to do 3 or 4 days a week. I have been doing them for 11 years, I don’t think I would be walking without them. Potter


sigmadelta
2 months ago

Hi, had RRMS now have SPMS, seen 2 different physios. I don’t bother anymore.
They were both bright young things, fit as fiddles and keen as mustard with their little clipboards and tick boxes.
I am sure they mean well, and can do some good with patients recovering from strokes or broken limbs etc..
But with MS… they are as clueless as the consultants who refer them.
It’s no good advising exercises involving raising this limb or that…when the messages to raise this limb or that aren’t getting through to this limb or that.
I have my own Multigym, which I have used for 20 yrs, even prior to MS.
I know what I can and can’t do anymore.
The biggest thing is the pain of exercise now. Every workout is like the first time you ever started. That awful feeling next day when the muscles have contracted is everyday life now.
So called ‘strengthening exercises’ , only add to the pain next day.
My muscles themselves aren’t actually that much weaker than they ever were, but the MS has affected the nervous system so much that it tells the muscles that they are in distress, when they AREN’T.
In short… the pain you feel when exercising is a lie.
It’s the wiring that’s all F****d up.
This is what any MS specialised Physio must help patients overcome.


hank
2 months ago

HI holly i was refered to a physio by my nuero last year at our last meeting in june 2017 still waiting for appointment with physio , i know you guys are busy but surely not that busy

yours martin hankins


bernadette
2 months ago

i agree with the comments fro beefree, and also from sigmadetta, the latters opening comments really brightened up my morning with a chuckle 😉 funny but sadly true
i was seen quite early in my CIS (with optic neuritis) and physio was ‘keen as mustard’ what I found helpful from her was balancing exercises and have continued with some of these and Tai Chi both of which helped.
I could see what physios in the room were doing with other people more advanced problems than I had (yes, no privacy in that area!) and thought pretty much worse than useless imo


grandma
2 months ago

Holly, I will go back to my favourite subject, swimming, couldn’t wait to get back in the pool after relapses, best all round exercise even if you can’t swim! All muscles, fingers and toes all get a workout and as a rule you can do things in water that you can’t do on land. Unfortunately mr government has now taken my mobility car away so haven’t done anything for 6 months, getting stiffer by the day, but the powers that be dont care about that.


chezy17
2 months ago

Hey.

I’m actually itching to get back to Judo after my relapse, just waiting on my MRI scan results to see. Either way, I’m still gonna go back to it, may even try clubbersise but we’ll see 😂😂. After my relapse, walking with my music works great 😊!

😊


imbarca
2 months ago

Hi Holly, thanks for asking for our experiences, it’s always good when health care professionals take the time to listen to their patients.

I’ve had MS for nearly 13 years. As you will have gathered we are all different, but for what it’s worth:

– i felt very tired in relapses; exercise would have been very difficult as I needed to save energy for the basic activities of everyday living. Stretching would have been a good idea though!

– when in the recovery stage of relapses and when well, a mixed diet of stretching, resistance bands, specific physio, cardio and yoga help. Little and often and mixing it up helps with managing fatigue.

– Be creative with cardio. Although I’m still walking I have limited ability/endurance in my legs (can’t jog/run, can walk a mile). I use an exercise bike for HIIT which is great for me as, like many msers, I suffer weakness when hot. Short, high intensity bursts are a lot easier to cope with in that respect.

– The Wii is brilliant. Lots of the games like Just Dance and Wii Sports can provide exercise that focuses on the upper body which is great if you’ve dodgy legs. The Wii fit with the balance board are excellent and I’ve really noticed an improvement in balance using these. And it’s fun, which is important for an (ex) exercise dodger like me!


merfield
2 months ago

Hi, I’m primary progressive and as far as can see, there seems to be little interest in the Physio world given to the likes of us. @sigmadelta made good points, maybe a little harsh….I’m pretty much wheelchair bound now and would I think benefit from some sort of sedentary cardio exercise – if such a thing exists. Stretches, I do religiously each morning which help suppleness but my balance is so shot that any other Physio is nigh on impossible especially as the brain/limb messages aren’t getting through as sigmadelta points out. Xx


imbarca
2 months ago

@merfield if you still have reasonable movement in one arm you could try a Wii. Virtually all the games other than the Wii fit (which uses a balance board) can be played whilst seated. You won’t get an amazing cardio workout from them but it’s better than doing nothing and they’re fun 😀


world25
2 months ago

Hi Holly,

I too am waiting for Physiotherapy, before I was diagnosed with MS in Jan 2018 I was really into my fitness and running 5k everyday and training to a be a special.

I found the best excersise for me at the moment is swimming and still find I’m just as good as I was before but I learn to listen to my body and not do as much as I used to.
I’ve recently started yoga which is really relaxing and good for stretches but I have looked at step class and strength and conditioning at my local gym. Hoping to start these next week.
I haven’t yet started any treatment for my MS but hoping to get back into my running after treatment


sigmadelta
2 months ago

Regarding comments from chezy17. If you are still active in judo, then MS has merely given you a shot over your head, so to speak.
Likewise world25.
You both seem to be on the fringe of anything serious…yet.
But this does seem to be what physiotherapists love .
Step class and Gym routines are only a dream for those of us who have had to come to terms with the mind-blowing reality of total limb failure and muscle contracture pain.
Physiotherapists really love patients who actively participate in their ‘action plans’ and see this is a victory.
Consequently, those of us who have gone too far down the road are left on the sidelines.
Because… there is nothing they can do when the MS has reached a certain point.
I mean world25 saying yoga? are you serious? lol.
A lot of us on here can’t even bend both legs without 10 seconds concentration.


stumbler
2 months ago

@sigmadelta , the brain is a powerful and under-used organ. It can be re-taught movements, with persistence and guidance.

“Success comes in “cans””, not in can’ts……. 😉


mickm
2 months ago

I’m 56 I have SPMS I was diagnosed in 2012.
I can’t walk unaided.
I do a full body weight lifting workout 3 times a week.
I have been doing this and and various other routines eg split routines changing reps and sets (Just to keep the body guessing) for 20years
As I sit here I can barely lift my leg off the floor I struggle to walk up and down stares, yet I can do 10 reps of leg presses with 210 kilo and hardly raise a sweat.
I never get sore muscles and have boundless energy. Which is frustrating because I’m limited with mobility.
I have seen Physio’s in the past however I stop because I didn’t feel they were listening as they had a set adjenda and not thinking outside the box.
I’m not posting this to say my MS is better or worse then anyone else’s
I just found if I don’t lift heavy and incorporate all the muscle fibres eg fast twitch hybrid and slow twitch muscle fibres my MS is worse.
Since lemtrada I also found my recovery time is quicker.


world25
2 months ago

@sigmadelta I understand what you mean but maybe I am lucky. I have very active RMRL so I have had times where I can’t physically walk but I’m an extremely positive person and I won’t let it beat me.

I can control my life not my MS so where I can do excersise I will push myself to do it. It works for me. I found when I physically couldn’t walk as long as I could get on the floor and do some stretches it made a lot of difference and I have recovered much quicker.


nessieb73
2 months ago

Hi, I experienced my first relapse in June 2017, which lasted about 6 weeks, complete numbness down the right side of my body and moderate difficulty moving my left arm and leg. When this occurred, I was in the process of training for a half marathon, which I have put on hold (I always knew exercise was bad for you 😉 ).
I tried to keep moving as best as I could. I’ve now regained movement and no numbness except in my left hand. Since January, I’ve begun ‘running’ again and am slowly building up to 5km if possible. I’d love to get to a half marathon again, but one step at a time 🤣
I have joined a gym and do body pump, rpm and will look into yoga/Pilates.
My attitude is to do what I can, while I can.
The main effects that I feel during and after exercise is pins and needles down through my left leg.
I haven’t had any physio.
Thanks for asking 🌸


chezy17
2 months ago

Other than knocking me down for a little bit and making me tired, my MS doesn’t stop me from doing anything particularly just my catching the fku


chezy17
2 months ago

Sorry stupid phone 🙈. Catching the flu, causing a relapse was what did me in for a few months. I, like world25, push myself to do things and to exercise. It makes me feel alot better and I do understand sigmadelta but sometimes I think it’s more mind over matter. As for the Judo, wasn’t sure if I did have lesions on my brain, whether I could do my Judo but knowing me, I’m going to do it anyways. Besides, I’ve got two munchkins that need a strong mummy and maybe I am just lucky in respects this may be as bad as it gets but I’m not gonna sit and around on if, buts and maybes!

Keep fighting and smiling 😊

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