Forum

Self controlling our auto immune system

I’m new to this forum but was diagnosed with remitting MS about 6 years ago. I’m very lucky that I’ve had no major relapses since then. However, I do try to reduce the symptoms that I do have by understanding what is going on and by mentally controlling them. That may take the form of certain exercises I’ve developed down to standing bolt upright and simply telling them to **** off. It’s more complex than that but mental control appears to work for me.

If our auto immune system is part of our natural defence system then I feel that we should be able to control it ourselves to some extent. My questions are -

  1. does anyone have the same experiences of self control?

  2. is there any solid evidence that we can mentally control and limit our MS?

  3. is there any research being undertaken in this area?

I have much more to say on this subject but I’m interested in other people’s experiences and knowledge.

Keith

2 Likes

I’m not sure that many of those controls are user-accessible! Having said that, I do try to dial down my over-stressy system through meditation, which is the same kind of endeavour, I suppose. IN our own ways, I expect we all do what we can to improve the weather in our internal states and systems, so I suppose we all try one way or another to do as you suggest, if indirectly. Good luck. Alison

hiya

just a short answer cos i am struggling to type but…

thought, speech then action. i have a theory why i have ms but it requires me to be really honest with self.

after a huge life changing attack i spent many hours/days in bed unable to move. i have very limited movement after time spent imagining/thinking about how the limbs used to move in order to reconnect some the signals. silly or similar to what i think you are saying-but in reverse as i was too late to read about such things.

very interesting subject open to huge discussion!

enjoy exploring, ellie

1 Like

Hello Keith

I have had MS for 16 years and I have been on Tecfidera for 4 years without any significant relapses but my condition gets worse, very slowly every month.

I am pretty desperate for any ideas to slow it and will try anything.

I shall try standing bolt upright and telling them to go away (nicely).

I have read several books on MS with all sorts of theories of mind over matter and self control.

Would be interested in any other exercises and I will try them out.

Thanks David

Bertie

I think part of a healing process no matter what it is, is ACCEPTANCE. I often liken to having a diagnosis of a disease like MS is we have to go through the grieving process.

DENIAL

ANGER

BARGAINING

DEPRESSION

ACCEPTANCE

I honestly believe we have to accept our illness in order to help us deal with it and yes maybe in some way heal ourselves or help us cope with it better. If it means telling your auto immune to go and do one then so be it. You have accepted the fact that it is this which is controlling your life right now, and your not about to let it rule what you can do.

I suppose what I do is if i get a new symptom is i just accept it. I will say ah so that’s your game is it, today you are giving me an overacted bladder ok well i can deal with that. Not too much of a problem, and i will just pee when i need too and rest a bit more as I know sometimes i get it because i have over done it OR even worn warmer trousers I know silly but it is how i deal with it.

Or a new sensation will come along and i will accept it and say ok so that your game today, you want to give me this that’s fine i can deal with that one, and i will just ignore it, not make a FUSS about it, and carry on doing things I enjoy. I take only 1 2mg diazepam at night for my MS. This is for muscle spasms perhaps which have occurred from poor posture. It just helps me to settle down if i wake up. During the day i take nothing. It doesn’t matter how much i am in pain, i accept that the pain is there and I move on. What can I do about it? Its not REAL is it. I say to myself I am not ILL I am NEUROLOGICALLY CHALLENGED.

The myelin sheath is damaged which confuses the brain signals. These can be worsened through outside influences like heat for example. When we are hot the spinal cord constricts, when we are cold it expands, so more signals can get through. So i avoid the heat as much as I can.

Inflammation can be stirred up by certain foods, so knowing which ones can do this its best to AVOID them. Which i do. For example gluten is a real trigger for me for more inflammation response like burning legs.

Its LEARNING to live with what is going on and not to poke the the bear. I know going out will make me fatigued, fatigue can be dangerous as I loose my balance more and more likely to fall so i do restrict how I go out.

I have accepted my MS its part of who i am. So i live with it i don’t fight against it. I have a decent enough life I suppose. I try my best to keep on my legs as i know to stop using them we loose them very quickly.

A lot of pain we have in MS in down to musculoskeletal pain, so its important to try as hard as we can to keep those muscles strong to support us. I do have a scooter and I take my dog out everyday so she and I can have fresh air. It makes me good to feel the fresh air on my face. We use a wheelchair when i am shopping as to try and walk is just PUSHING THE BEAR to much. I have ACCEPTED that I cant do it so why push it.

Diet is defiantly a good way to start I think. I don’t think anyone with MS should smoke or drink to be honest as the smoking is bad enough but drinking alters the brain to some extent and its confused enough as it is and we are more prone to accidents or falls if our brain is so confused it doesn’t understand how to keep us safe.

So yes I do say “oh for gods sake go do one”! I cant be bothered with this rubbish (I use a stronger word here lol) right now. And after a while of switching it off in my mind i forget its there.

Like i said i take no drugs during the day. When the pain of wrong turn signals gets too bad I have a bit of therapy in the form of shopping lol. I have way too many things in my little flat lol. But it does work.

I also write a blog which helps me to concentrate on something else then what is going on with my body and I watch lots of things on amazon or netflix.

I know i have been told i have a progressive disease, i have to learn to live with it, no point in crying over it, there are worse things out there to cope with and people far worse then I am. I think as humans we are challenged and its whether or not we ACCEPT that challenge or deny it that is the key.

Stay healthy make sure you include B12, and vitamin D in your diet, support your immune system, and your mind. It all helps make this journey a lot easier to cope with.

1 Like

There is a danger that we become too polite in trying to explain how we feel about having m.s. Where has this vocabulary - denial, anger, bargaining, acceptance come from and what exactly do these terms mean? The vocabulary seems to have evolved exclusively around m.s. For me having m.s. was being dumped on from a great height - it has *uggered up some aspects of my life - I have never been ‘in denial’ - don’t like the term ‘acceptance’ - basically I am doing the best of a bad job! As for my being able to control my immune system/m.s - I wish.

I’m with you Krakowian, I don’t accept MS in my life. I’ve never denied it, bargained with it, never grieved for my able bodied life. And why should we go through these stages?

I don’t believe that standing in a corner (or anywhere) and telling MS to Fog off will help. It won’t make my legs work.

It seems to me that someone who has had minimal effects from their MS after 6 years is lucky. You can tell yourself that you have extremely strong self will and have told MS to **** off, but in my opinion, all you’ve been so far is lucky. If you come back after 20 years and say I’ve controlled my MS with my mind, I’ll be genuinely pleased for you, but I’ll still think you’ve been lucky.

Sue

2 Likes

Everyone deals with their MS journey the way they feel best.NO ONE says you have to accept it Krakowian/Sue that’s how i perceive it and how it works for me. I do think being diagnosed with a chronic illness comes with stages of grief. Its my PERSONAL take on it.

I was grieving for the job I lost the life I led. I decided the only way to move forward was to go through the grieving process and then finally accept i had it. After all it ain’t going no where so for me i might as well find a way i can deal with it.

I don’t control it with my mind, I just deal with it as and when I need too. I have accepted i have it no changing it is there. why do i need to fight it, fighting it is just a waste of energy.

We all deal with it in our own way, people on forums are sharing their experiences, doesn’t mean its your experience or the next persons. Its an individual thing.

I don’t think i can control my immune system i wish lol, but i can help it by knowing what upsets it.

At least we are trying to be positive by sharing our experiences and asking questions.

Where does luck come into it? No one is lucky to have MS and if someone is coping well with theirs because they have found a way to deal with I say KUDOS to them. We all know that next week the walls may come tumbling down, for now they are in a good place and want to share.

One persons minimal effect can be totally opposite to someone else doesn’t it depend on how each person is coping with it?

I have a really high threshold of pain for example. I went to work a week after fracturing my coxic, someone else may have been off their feet for weeks in terrible pain, doesn’t mean my pain is less it just means i cope with it better as I am blessed with a high threshold for pain.

I don’t see any point in fighting something that is not going away. Its here to stay and how i deal with it is by accepting it and dealing with each day as it comes. rosie.

I made a poor choice of words when I said ‘lucky’. You’re right CC, no one with MS is lucky. It’s bad luck to have MS, no matter how disabled one gets or how well or badly it affects each person.

I think I was always a bit negative in my approach to change, and still am. But actually, I live my life as it is now in as positive a frame of mind as is possible for me. I think that probably comes across on this forum. Yes, I’m disabled, nothing is going to change that. There’s no way I will be able to walk again. Unless magic is possible and I somehow manage to access it. But there are good things and good times in my life.

I wish I’d been able to keep working. I liked my job. I pretty much designed it myself, in spite of being an employee. It was my choice and I both enjoyed it and made a decent living from it (I still miss my beautiful company car!)

And I still miss my bloody legs, the ones that could walk, and dance, and stand up in the shower, and allow me to be independent.

Sue