I’ve been doing serious amounts of research over the past few months, as I’m sure everyone else here has done and I was just wondering if you could share what you have found really helps and conversely what is really bad for your MS symptoms.
I’ll start, I had a really bad exacerbation at the beginning of the year. It went on for 6 weeks, where my symtoms got worse and worse. I didn’t know it was an MS at the time. I finally started taking B12. Over a week, this completely got rid of all my symptoms and I started feeling really well.
I’m not sure what makes my symptoms worse but I’m fairly sure that dairy and sugar make things worse and I’m not too sure about caffeine. I drink green tea.
I thought that this might be a helpful and useful exercise.
I’m still trying to work this all out, but the only things I can say for sure that make symptoms worse are tiredness, so a full nights sleep is essential (not easy with two young children!), plus I once tried putting deep heat cream on my stiff legs and it was agony! Heat is no longer my friend (baths are cooler now too!). As for things that have helped, just resting and relaxing when possible. I’ve started forcing myself to eat healthier and now take multi vitamins, fish oil and high dose vitamin D3 but I’m not sure how much these have helped yet. Good luck!
Hang on! You post late at night, when the boards are quiet, and less than 12 hours later, you’re already complaining you didn’t get any replies yet.
Has it occurred to you most folks were in bed for the majority of time your post was visible?
Give it a chance - more people will come along and answer, but it’s not always instant.
Personally, I don’t think much that I do has had very much effect. I do think exercise - to the extent I’m able - has helped preserve what strength and stamina I still have. I also swear by the prescription muscle relaxant, Baclofen. I’d really be in trouble without it.
I take Vitamin D3, as there’s scientific evidence deficiency IS linked to MS. I also take a cocktail of other supplements, more in hope than in expectation. I have to say, I’ve never felt better from any of them, but I don’t know how much worse things might have been if I didn’t take them. I’m scared to give them up now, just in case they’re helping.
I’ve never felt diet has any effect whatsoever. I can’t think of a single food I know makes me better…or worse. I try to eat a varied and balanced diet, but that’s sensible for everyone, not just those with MS.
There are lots of things which can exacerbate symptoms: heat, cold, tiredness, overdoing things, infections, colds etc…or of course it may not just be an exacerbation of symptoms - it could be a relapse or a relapse coming on.
I take vitamin D3, vitmain B complex, multivitamins, modafinil (for fatigue), pregabalin, clonazepam and at the moment I’m on copaxone.
Like Tina I think that an all round healthy diet and gentle exercise is the way to go and personally I’ve not noticed any difference with any particular food - but it really does vary from person to person.
I can’t do some of the things that I used to do and to be honest fatigue tends to dominate what I do anyway. It’s getting the balance right. Resting is important.
I haven’t looked into it fully yet, but I’m sure diet has a big input in any situation. A few years back my hubby and I went through four years of hell trying to have a baby - three cycles of IVF, etc. - before I saw a nutrionist. One month later I was pregnant (naturally) and second time round I followed the same routine and was pregnant within a month!!! That can’t be a coincidence!
I switched to decaff tea and Coffee have helped my bladder. Before when I need to go, I needed it then, and ended up having acidents. Also was going like 12 times a day, with a normal fluid intake. Also dribbling after I thought I had emptied my bladder. Much better on the decaff
Generally speaking I think what we put into our bodies does make a difference to our general overall health and we all know there are certain food/drinks that aren’t good for us if eaten or drunk on a regular basis - or in excessive portions for example.
Some of us may have other specific dietary or health requirements too - either known or unknown - and we’re all likely to fall foul of suffering from one ailment or another at some point in our lives too, but it doesn’t necessarily follow that if we do they’ll be related to (in our case) ms. If you see what I mean?!
So I guess what I’m saying is that some things may prove beneficial to you whilst others won’t, so it may be a case of adopting a ‘try it and see’ approach - if it appeals. But in doing so make sure that you research things properly because otherwise they could end up having a detrimental effect.
Fatigue is a big problem for a lot of people with ms, myself included, so if you decide to cut out any food groups from your diet for example, then replace them with alternatives because otherwise it could have an undesirable impact your fatigue as well as your body not getting what it should be getting from your diet.
Another bug bear for ms’ers is bladder issues, so caffeine is generally considered to be something that needs to be limited or avoided. On the other hand caffeine isn’t thought to be that good for us anyway so it really depends on your situation as to how far you take it. Lots of people opt for decaff.
I’m pretty sure there’s a publication available on diet and ms - but I can’t remember whether it’s on here or the ms trust wesbite. Maybe take a look, you may find it helpful?