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Walking and stiffness

Hi everybody,

iv recently been diagnosed with MS. I’m very nervous, worried, scared, anxious and every other emotion there is. I did feel like I was starting to improve but this last few weeks i have really struggled again. I have a 4 year old and a baby of 5 months! My walking is difficult due to stiffness and tingling and MS hug. I think what I’m wanting is any advice with why I’m feeling bad again and if I can do anything to help with my struggling legs? My thighs are worse than ever and feel so tight.

Any advice, help, support or anything will be amazing x

Hello

Do you think this is a new relapse? If it’s been going on for some time, it’s probably too late for steroids to help (even assuming you wanted them), so it’s a case of riding it out. Eventually, given a bit of time, the hug and the stiffness will ease a bit, or maybe a lot.

You could try talking to your GP about drugs. The most common drug used for stiffness and spasms is Baclofen. But the downside is that it can make your muscles weaker, so you need to start on a very low dose and work up very very slowly. But that could help with your stiff legs and maybe the ‘hug’ too. Tingling could be helped with Amitriptyline, but that’s something that works best when you take it in the early evening, so it helps with sleep as well as tingling, pain or burning sensations. Obviously, you pick one symptom and try to find something that works for easing that symptom, rather than throwing a load of different medication down your neck at once!

You might find that some physiotherapy might help. If you don’t already see a physiotherapist, then maybe you could ask for a referral to a neurological physio?

It’s a hard time when you’ve recently been diagnosed. There is such a lot to learn about how your body works and what is now ‘normal’ for you.

Best of luck with it.

Sue

Thank you for your reply. I finally spoke to my MS nurse yesterday and she just thinks it’s a flare up. I have had a cold so hoping it’s just that and I will improve. It’s so hard as I have a baby 5months and a 4 year old. MS started when I was pregnant. She did mention a few different medicines but with a baby I don’t know if they will be for me. I guess I’m just scared of the future and missing out on doing things with my kids. I do have a physio but he doesn’t think I need to go all the time. I’m not sure how much it’s helping either.

If you find the stiffness is still with you in a few weeks time, and if it’s really affecting your walking, it might be worth considering trying a very small dose of Baclofen to see if it helps.

Hopefully you will find when the cold is gone you’ll feel much better. Personally, I hate the term ‘flare up’, what’s its supposed to mean? A relapse? Or not?

I can see a relapse happening when you encounter a virus or infection. Ie, it could make your immune system overreact to the foreign invaders and start beating up your myelin, but don’t really get the whole ‘flare’ thing.

Sue

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Ok so what is Baclofen hun? Yeah I hate the term also, it doesn’t make sense to me! I’m just really worried and scared about the future and not being “normal” again! Not being able to play with and run around after my kids. Worried about holidays abroad and well everything really.

Ive approached my doctor when I have had very stiff legs. All he said was its all part of MS Symptoms. I asked what can be done about it and once again I was told its all part o MS. Useless *%$*&. So basically, nothing. Baclofen does help especially at night and sleeping but during the day I just find walking around and cycling (indoor bike) eases the stiffness. Would be interesting to hear what other people do to overcome this inconvenience. Im PPMS so its not a relapse but its there 24-7.

Hi Nat

Baclofen is a muscle relaxant. The problem with muscle relaxants is that you need a certain amount of stiffness in your muscles for them to work (ie stand up and walk!). But, muscle relaxants help a huge number of people with stiffness and spasticity - which is what causes spasms, when your muscles suddenly tighten, then relax, then tighten …

I’ve used Baclofen for years and find that it helps with stiffness and spasms. But the idea is to start with a very low dose. It comes in 10mg tablets - the maximum dose is 80mg per day, I take about 60mg, you should aim to start on 10mg and see how / if it if it helps. Some people just don’t like Baclofen, and need to look at an alternative drug.

You could have a look at https://www.mstrust.org.uk/a-z/spasticity-and-spasms and see if there’s any exercises or anything else that might help.

I do understand your worries for the future. It’s a scary time for you. But honestly, eventually you’ll feel more like ‘normal’ and still be able to do things you used to take for granted and now don’t. Try to keep yourself as fit as possible, if you don’t currently have an exercise routine, get some help from a physiotherapist. You will still be able to have fun with your children and as for holidays abroad, there are always ways. I’ve had MS for 22 years, and have mostly been unable to take disease modifying drugs. This has meant my body has taken the brunt of a lot of relapses and I’m now a wheelchair user. I’ve been to India twice in the last few years. MS doesn’t have to stop you from doing what you really want to do.

Sue

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Nat,

Being scared is a completely reasonable response, I was diagnosed in 1991 and can still become scared by changes or new stuff. However I am a bit better at accepting each new “normal” I humbly suggest that you try not to concentrate on the bad “what ifs” which may or may not happen, devote your valuable energy and time on having the best time you can with your family. I categorically stated in 2010 that I could never travel again. How wrong I was.

I won’t go on because you probably want to slap me already. With the right support crew you will be amazed by how adaptable you are.

All the best

Mick

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Hi, have you tryed magnesium tablets? I take up to 650mgs in the evening it really helps with tightness also the magnesium spray is really good.

Mick I defo don’t want to slap you lol! Reading you say you were wrong about travel makes me smile as I love my holidays. How do you cope with the heat? Heat makes my symptoms worse that’s why. simone2 Iv not tried them no but think I might do now. Can you take them at anytime during the day? Think I’m worried as I don’t have any good days, like Iv not had a day where Iv not had numbness, tingling or stiffness since it started. Granted it’s been the most stressful 6 months of my life so far (excluding my diagnosis) but It frightens me with my beautiful kids being so young and that what if this is how its going to be for life or it just gets worse and worse.

Nat,

As a mum you already have super powers, now you can develop some new ones, like the ability to find cool or shady spots, the ability to find a loo, and the ability to plot the safest and easiest routes.

Your kids will know that you are their amazing mum, whatever the circumstances, I need to stop droning on before I give myself a slap.

You just need to ensure that you have a support network of family friends and professionals, who can all help a bit with the tough stuff.

Good luck

Mick

Simone2 what magnesium do you take? I’m confused with which ones are best?

Nat

If you’re going to start taking Magnesium supplements, I should avoid Magnesium Citrate as it can cause diarrhoea. Magnesium Glycinate is a better idea as its gentler on the stomach. You should probably start by following the dosage indicated on the bottle.

Sue

Thanks ssssue, do you need to take calcium tablets st the same time? Or get a combined tablet?

I think most people who take Magnesium take Calcium too. But I’m by no means an expert. Other people might be better informed.

Sue