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PPMS

Hello

i’m new to this. I have Primary progressive MS and have had it for about 5 years. I recently went to my local sports centre to try trampolining (where I discovered my balance is non existent!)and yesterday I went swimming. Whilst swimming I noticed that my feet and toes kept ‘cramping’ up,making me panic. Has anyone else ever suffered this please? It’s making me too scared to try any sort of exercise in case I fail. I’m a bit of a self perfectionist, and can’t bear the thought of not being able to do something.(I have had a hard lesson to learn, as I used to run marathons, but can’t walk to the local shop unaided) x

Hello and Welcome Laura,

I think trying trampolining was very adventurous - I think it would test anyones balance let alone someone with MS. Swimming is good. The toes cramping is probably spasticity. I am on baclofen and I find my toes are better behaved… I try and go to the gym and I find the rowing machine very good as I feel it works all my muscles and is very good for the core.

You say that you have had PPMS for 5 years, were you diagnosed 5 years ago or more recently ?

I have something that looks a bit like PPMS but have no diagnosis yet as I dont seem to tick enough boxes.

Welcome Again

Moyna xxx

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Hello Laura,

Welcome to the forum, everyone on here is so friendly and helpful.

Years ago when my nieces and nephew were small their Mum bought them a trampoline…I thought how difficult can this be! Like you I had an awful shock! With my balance and my bladder!!

I can’t do too much excersize now but I can still do the excersises the neuro physio gave me which are great because they are specifically for me and my problems…maybe your MS nurse could refer you to one? I think it’s import that its a neurophysio and not a normal physio…they seem to know so much about MS.

Take care,

Nina x

Please don’t fall into the trap of seeking perfection, because however little you can do, it is an awful lot better than doing nothing.

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Hi Laura and welcome.

I too can’t exercise much now but I do go to an armchair yoga class once a week. However that doesn’t mean that you won’t be able to carry on swimming.

Moyna’s advice about Baclofen is good as is Nina’s advice on neuro physio.

What interested me about your post was your description of yourself as a self perfectionist. I can’t tell you how many people with MS describe themselves as that… many of us seem to be people who pushed ourselves to be the very best at whatever we did.

Prior to the 1960’s doctors used to talk about an ‘MS type’… and that would be a high achiever… perfectionist… person who pushed themselves to their limits.

The ‘type’ theory is out of fashion now but after over 7 years on this site I think it has some truth in it!

Makes it hard to accept limitations that PPMS puts on us… but you can do it. Takes time but you’ll get there.

Glad you found us!

Pat xx

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Don’t be afraid of exercise - every little bit helps. Falling over is frightening and can be very dangerous (eg. broken limb), but don’t let that put you off. My balance is shot to pieces, but I still go to the gym and swimming (complete with my 3 wheel walker). Do what you want while you can. Good luck.

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Hi Laura, I go swimming one or twice a week. My legs tend to stiffen up and feel numb after about 20-25 laps, so stop at that point or take a break, that’s what my MS nurse recommended. Sport has always been a big part of my life so I’m finding it frustrating not being able to do at much as I could a year ago. However, I’ve found swimming gives me a bit of the ‘buzz’ I need, I’d be bouncing of the walls otherwise! I’m also trying out Pilates, which I’ve been told is good too. All the best, Ian

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Hi Laura and welcome to the forum. As the others have said you’re not on your own for feeling frustrated having considered yourself a bit of a high achiever. I wasn’t aware of the “MS Type person” Pat mentioned but it does seem appropriate to me too. Like you and many others, I have balance issues and was quite unsuccessful at the gym, the worst experience for me was falling off a treadmill. I think they should definitely be avoided.

Like Nina mentioned, a Neuro physio is your best bet. I try to do the core strengthening exercises mine gave to me, I have a gym ball at home and there are so many strengthening exercises you can do on it. The best thing about seeing a specialist physio is that they know how much our nervous system affects our bodies and look at things like our gait and posture and try to make our lives easier and safer with targeted exercises.

Swimming is very good for strength and cardiovascular workout and as the others have said, there are drugs for spacticity. Whammel hit the nail on the head though. High expectations are unrealistic and very demoralizing. You’ll probably never run marathons again. You must set different goals now, your body has changed and unfortunately with this dx you won’t get back to where you were years ago. That doesn’t mean you give up though, you can still enjoy life and achieve success but just in other ways and with new targets.

This forum is a lovely place where everyone understands the frustrations and have experienced symptoms and challenges you’ll never find in a book so I find them very helpful and motivating. I hope you do too. Take care.

Cath x

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Hi Laura, and welcome!

When it comes to exercise, I always recall what a former work colleague said (not in the context of MS - she didn’t have MS and I had no diagnosis and few symptoms back then). She said that, for her, exercise was primarily about wellbeing. This remark stayed with me ever since. I think exercise shouldn’t be like some sort of SAS beasting session, but enjoyable, refreshing, invigorating and pleasant. I think the holistic approach is best; choose things that you like to do, that suit your personality and ability, and don’t push to the fatigue point. My neurophysiotherapist said that the “crash and burn cycle” - where you push too hard then spend a couple of days unable to function does not increase stamina or fitness.

I agree with the great replies others have given you, and that Pilates is brilliant - it has improved my strength and balance no end.

It’s a case of loving your body and understanding that it must fight this condition as well as try to perform normal, everyday functions. I had to learn to be a lot more patient and disciplined than I used to be. I completely understand the perfectionism. But now I try to see that perfectionism is not always constructive or the best approach, and I try to remember what my grandfather said: “Life’s too short to be a perfectionist.”

All the best

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Wow! Now I’m sitting here crying because everyone has posted such lovely comments-Thank you all!

Moyna in answer to your question I was diagnosed in2012 but was having symptoms for a long while beforehand, mainly foot-drop. And I realised that for a long time Deep Heat never worked on me. It used to stay cold, I guess that was all due to the nerve endings being ‘broken’. The amount of tubes I would buy thinking that the one I had was out of date!

I will try all of your suggestions, slowly,(I can’t do anything quickly!!) and come back and let you know

thankyou again everyone

xx

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Hello Laura.

There is already lots of top advice here-we are all experts at this! If I can just add that my attempts at doing and achieving have switched to the more cerebral and artistic. I used to swim 40+ lengths a day, cycle over 60 miles twice a week, play tennis and go up mountains in Wales. I also made a living as a piano and cello teacher. Adjusting expectations became rather essential if only to offset the disappointment or feeling of failure resulting from increasing physical limitations.

Now (and it’s taken a fair bit of effort to get so far) I do cryptic crosswords, art classes and write a bit of children’s literature (yet to be published but we live in hope). It doesn’t replace the thrills of the more dynamic lifestyle but it does help. Plus we can get to top quality concerts quite regularly. I suppose life evolves for everyone as circumstances and attitudes change. In our case such evolvement is always going to be quite profound.

Best wishes and welcome, Steve

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Hi Laura and welcome to the board. I have had PPMS for over twenty years and fought it every step of the way. But give its due it is a relentless critter. Learn to let go and adapt. Sound you have started. I last went on a trampoline ten years ago. I couldn’t walk built was fun bouncing on my bum. And the kids had fun getting me on and off. Embrace equipment that helps you maintain a degree of insolence don’t shy away from using it because it is there to help YOU. Don’t think I ain’t using that because people will think! Sod others and what they think it’s you. Most importantly SMILE. You may not have perfection but you are perfect at being you.

Don

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Brilliant summary, Lapwing, thank you. And hi Laura! Can’t add anything better than all taht’s been said, but all good luck to you!

Kev x

Brilliant advice from everyone (as usual) just want to say welcome to the forum Laura.

Pam x

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Hi & welcome.

I was teaching pole-fit/dance classes up to 2/3 weeks before diagnosis but do very little now. My balance is also pretty shocking and I’m actually a little afraid of swimming for so many of the reasons mentioned so far. I can only point my toes on my right foot by kind of twisting my ankle in a circular motion into it!

I try to do squats and stretch, although that’s a little oddnow. I also use a foam roller on my quads, it’s not dignified but it helps a little The spasticity makes my right quad really tight and my knee just doesn’t want to bend

Sonia x

Hi Laura and welcome back.

I pretty much second the sound advice already offered.

And, as someone who also used to run marathons, I know how frustrating this whole MS thing can be.

What’s worrying me at the moment is that one side of my body is looking pretty buff due to all my gym work, whereas the other looks very weedy; I’m a very strange sight on the beach or by the pool!

Basically my right side does all the work these days, lifting, carrying, pulling, pushing, you name it. Whereas my left seems to be wasting away so I’m now on a specific weights regime for my left limbs…holistic indeed!

I too go swimming and frequently get cramp in my toes and calves - very unpleasant! For that reason I try to always swim in the outside lane and stay next to the wall so I can stop and try to stretch out the offending muscle really quickly.

If I feel cramp coming on I either stop and stretch the relevant muscle or try to alter the position of my feet (try to flex them as I am swimming) so that the cramp doesn’t happen. When doing breaststroke I do one kick to two arm strokes and this helps avoid cramp, too. One pleasure I find in the pool is standing at the edge (in the pool) and bending my foot up behind me to get a really good stretch of the thigh muscle (much easier in the pool than on dry land), then holding my knee up to my chest and getting a good stretch of the hamstring. I also stand on tiptoe and get a good stretch underneath my toes - sorry I don’t know how else to describe it!

Finally, after going to the pool for many years, I discovered it’s much easier to put my flip flops back on if I go and sit in the steam room so I’ve added that as a little bonus at the end of the session (not for too long otherwise I overheat).

Welcome from me, too

Bouncy