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Starting from close to the bottom.

Good morning everybody

i. Hoping to get some advice from somebody please.

I was was diagnosed with RRMS 10 years ago now and it has subsequently developed into secondary progressive. Rewind three years and I. Was walking for miles and being very active in my job, I lost said job (not because of MS, but sort of but that’s a story for another time) and I basically sat down. I also went onto Techfidera which didn’t agree with me and made me significantly worse. All of this has resulted in me not being able to be very active and not being able to walk very far.

Question: I know I’m not at the bottom, but from my very personal view, I feel it and it’ll be a long process to rise back up again to even half of my previous levels. Has anyone else been in a similar position to this wanting to get back to how they were? The way I see it is that the symptoms of MS has made my muscles weaken and waste, and that is what I’m struggling with most.

I hope some some of that made sense, if it didn’t, ask me a question. Any response is greatly received.

From Simon, aged 31 and 1/4.

Hi Simon,

Losing your job is atrocious at the best of times. I know this because I spent three years as a barman before I got anywhere near to what had been earning in industry. (There’s nothing wrong with being a barman except the pay, the hours and the customers).

That was before I got MS. I was given physiotherapy to strengthen muscles that had become weak, which helped a little, but I decided to try something more “cerebral” and took up Tai Chi. This produced some unexpectedly fast and beneficial results. I was taught to think about my posture and learned how to get more control over the way I moved.

I have PPMS and my condition has deteriorated since then but I can still perform some of the basic moves I was taught. I’m sure that this has delayed the progress of my disability.

Any sort of exercise is good but it has to be little and often. And that takes discipline, which is why a class is good because a tutor will keep pushing you to achieve your potential.

Regards,

Anthony

That’s really useful. I’ve been online and immediately looked for Tai Chi classes.

Does anyone one know if using a TENS machine would be of any use?

Is the TENS intended for pain relief Simon? When I had 1, I was shown where the pads should go for optimum results. They are recommended to be used for a while, over a period of time to benefit from them. I am not aware of them to be used for muscle tone though, think the MS society has a bit on it’s uses, can you put it to MS team?

drop the SPMS label.

SPMS implies all parts of us are in a steady decline - that’s not right. We may have bits of us in decline and other bits of us that recover.

Get an exercise bike and do 5 mins morning and evening and see if it helps.

You aren’t going to beat m.s. but you’re going to give it a good run for its money.

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Tracey, it is purely for muscle tone. It’s basically so I don’t lose any more muscle.

Krakowain. I have one those seated bikes, so I can sit on the sofa and do it, and I started it, but things got in the way, new baby, got married, Techfidera, moving house…so yeah, I should get back on it. I know it will be a long and hard road, but one that I need to take.

Have a look on the MS society’s website, they do have info on TENS, no mention of improving muscle mass though, sure there’s something on the market though, usually is!

Simon, ditch the excuses and get moving!

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Hello Simon,

I am sorry to read that you are starting to feel a bit stodgy now that MS has forced you to be less active. But don’t worry to much about now being SP instead of RR. I have been SP for a few years now and if anything my MS seems to have just come to a grinding halt and I certainly haven’t got any worse. I can’t remember the last time that I have had a relapse either. Everyone is different of course but personally I find PILATES very useful as they seem to do the job any yet not heat up and stress my body. Good luck.

Moira

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Hi Simon

I know it’s hard but essentially the only thing you can do is to exercise while you still can.

Krakowian was pretty blunt, but the message is basically right.

If you don’t get your core strength better, you will find that you are incapable of improving. And let me tell you it’s much much harder once your core has properly gone.

I lost the ability to walk due to a devastating relapse five and a half years ago. It only took a few days and I went from staggering with a pair of crutches to complete inability to move or feel anything below the waist. I got some of it back, but in part due to bad advice, and in part due to my inability to do the exercises (every time I tried, I got worse), I’m left with virtual inability to walk at all. I still do a small amount, just to retain the ability in particular to transfer. But I have to use an FES and a walker just to do 5 metres. Without either, I can’t walk at all. It’s a shame for me that it took 3 years to get the FES, with it immediately after the relapse I might be able to walk properly.

Even I’m not at rock bottom. So you are some way from it. Not being able to walk far is a long way from not being able to walk at all. If you need to acquire a walking aid to help you do more walking, do it. It will benefit you more just to extend your walking ability. If you can use a static pedalling device, then do it, it will help. If you find it’s a bit difficult to do with your fee, put it on a table and do it with your arms, it still exercises the core.

If you have access to physiotherapy services, get onto them and get an exercise regime sorted.

Otherwise, see your GP, they can actually help you to access exercise facilities, so can get you a pass to local authority gym / swimming pools. Or you might be able to get access to hydrotherapy for a number of sessions.

If you have an MS nurse, ask him/her for suggestions as to what is available locally.

Sue

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hiya

forget previous goals and set new realistic ones.

may i suggest living with enemy by ray owen which is a fantastic read-i am 3/4 way through it.

ellie age 48 3/4

Up to a few years back I used to go to the gym twice a week and do quite demanding cardio and weights workouts. Approximately 3 years ago I stopped going because I was suffering from extreme fatigue…due to - guess what - MS! I was diagnosed in Feb last year and after steroids and a lot of the symptoms easing off I mentioned to my GP that I missed exercising. Consequently I got a GP referral to a gym near me where I started off by doing pilates in a class once a week. I did enjoy starting to use my muscles again and I did get a bit stronger during that time but pilates really wasn’t for me - and when I had a review with the trainer at the gym I asked if I could get back into the gym rather than doing pilates.

I started back in the gym just after Christmas - obviously wasn’t doing anywhere near as much as I used to - but 7 months in I have re-joined the gym properly and I usually go twice a week. I do more weights than cardio because it’s my muscle strength I want to hang on to. I am back to enjoying it like I used to - sometimes I don’t fancy going but I really do feel a HUGE benefit once i’ve been.

Ask your GP if you can be referred for an ‘active living’ programme - it might just get you back on track.

All the best

Juls

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