So tired of people suggesting I try the new fad diet to cure my ms

[Jrasted79]

Ok, so I'm feeling a bit frustrated and need to vent.

I know people mean well but I am so tired of people I know and barely know insisting I try the new fad diets or other things to cure MS. If it's some new idea, after 4 years of agony, believe me, I've already tried it.

As far the new fad diet, it really frustrates me. I healthy diet is good for anyone but I have a few problems with fad diets. First, they haven't been around long enough to have long-term research done to support their claims. Secondly, they often have you cut out things that are good for a lot of things, they often have you cut out things that are high in nutrients that are a must for a healthy diet. Thirdly, what works for one person may not work for the next, we are all different. The last two, some of these diets require a diet consisting of expensive foods that someone like myself just can't afford. And lastly, wow all that work to prepare the meals. Most days I don't have the stamina or strength to cook a meal. I rely on things that I can separate into daily amounts, like carrots, fruits, and other things. Sometimes just getting up to pop something in the microwave is a task.

So these are the things that frustrate me, and I can't tell them to stop or else I get accused of not wanting to get better. I try my best to eat a healthy diet but sometimes it's just not feasible. And a huge thing for me is research. They fill it with a bunch of stuff that suits them. Of you look at the actual research the trials are not carried out in a proper manner, and can't possibly know the long term outcomes. I even feel that way towards a lot of medicine but sometimes you'll try anything.

Anyone else feel this way? Or am I being stupid. I just hate when stuff is being pushed on me all the time when the people pushing it fall for every new fad and just because Dr. Oz pushes it, it must be great!! He has agendas too, this is how he makes money. Not that I don't believe he is all wrong, but I'm sure you understand what I'm trying to say.

Maybe they are just sick of seeing me miserable or tired of hearing my struggles but if they are my true friends they should stand behind me and respect how I choose to manage my illness. Maybe they are frustrated because I have to take so many breaks when we go out but that I believe will never change and I have to find ways to manage it and find "work arounds" one of which is not to push myself but I still need to have fun once in awhile or else all my fighting is for nothing.

Sorry for the rant, just frustrated and a little mad.
Hope I posted in the right place as well

[aredmosquito]

I could not agree more! Once diagnosed, I started hearing people telling me to try this diet and that diet and it just made my head spin and flat out makes me angry!

For example, I was gluten-free for a while. Not for any health reasons, just because of pressure to follow the trend. I have since added gluten back to my diet in moderation and actually feel better than I ever have, even before the MS.

Honestly, when people talk to me about changing my diet, they always have such a condescending tone. Always talking about how such and such food is "poison." I am far from a child and my diet is my choice and my business.

[misslux]

Agreed, agreed, agreed!

[J-Bo]

Booyah! Righteous rant!

[misslux]

I read this comment on a blog post once and saved it because it resonated with me and I'm sure you can all relate too!

As a person with not 1 but 2 chronic illnesses I think you should wait until you know more about the person. At this point you don't know what they have or haven't tried, their openness to trying new things, or their current frustration level with their disease. Having a chronic illness is bad enough without everyone offering their "solution" to it. It can be very frustration when you've been suffering with something for years and someone comes up and goes "oh I know someone with that and they solved it by doing X". It's like oh, I'm such an idiot to still be suffering when that is all it takes, thanks jerk.

(FWIW, the blog post was about how diet can beat ALS based on one person's anecdotal evidence... Yeah seriously.)

[J-Bo]

I had seen some mention of some diet being promoted for MS, but never even bothered to look at it until just now. Turns out that I've been eating pretty much like that for about 20 years. That worked out really well, didn't it?

Nobody has suggested this diet to me yet, but I'm sure someone eventually will. And when that happens, I will be sorely tempted to say "You know, I heard there's a diet to prevent teh stoooopid-whenever you think you're about to say something idiotic, grab any food available and stuff it in your gob." No, I wouldn't really say that. But I'm sure I'd really want to.

[Jrasted79]

Oh my goodness!! I AM NOT THE ONLY ONE!!! I was really starting to think I was just becoming a cranky, sick, miserable person.

I do sometimes feel like I am becoming that cranky old lady that gets annoyed with everyone, although I am young and I'm probably not that bad.

Here's a good example. I started riding dirtbikes at age 3. My poppa (grandpa) was and always will be my best friend and he had ridden dirt bikes most of his life, Even rode with Steve McQueen. So growing up we had a cabin in the desert with a track and would go riding in large groups on the weekends and holidays. ( I currently live about 1 mile away from the cabin and its still in the family)

I live in the desert currently and recently some people bought the property what across the dirt road from me. They have built a track which is about 200 feet from my house. They are out every weekend, 8 RV's, ride in packs of 15-18, yes I counted. They start reving up the dirt bikes around 6 am and I hear them riding until about 2 am. Who knows when they sleep lol. Anyways I get so frustrated and cranky because all I want to do is sleep and rest on my weekends and they are on that dang track most of the day. They make huge dust clouds, and I cant keep my door open. Then I remembered I did that from 3 years of age until about 25. So I deal with it. But man do I complain about it all the time.

I also complain a lot about people up here that have no common sense or education. There are a lot of ignorant people around here and most are sadly drug addicts and alcoholics. It's cool out here to brag about just getting out of jail and doing stupid stuff. And the druggies always hit on me, it makes me think, do I look like a drug addict. I came from a professional background so this culture is not what I am used to.

I love college because that is where I can speak to people who have things to talk about other than drugs and prison. I know I may be a bit judgmental but it is just a new way of life that I am not used to. This summer it will be two years I have been back. Only came back because I need help with everyday things because I am getting too disabled and my mom lives out here.

Aww man, I am just a cranky sick girl. Anyways I think I am totally of topic, sick of being sick, and I think we all get so some degree of cranky if we are in pain or suffering from some other symptom on a daily basis. Maybe I take it out mentally on strangers, so I stay sweet to my 8 year old heart.

Thanks for listening to the newest rant!

[tommylee]

There are a lot of ignorant people around here and most are sadly drug addicts and alcoholics.

Ah, the joy of desert life.
I have been into MX most of my life and love riding in the sand and best of all dunes...but you sure meet an interesting group of people out there.

Perhaps you could suggest your own fad diet that cures ignorance? ...
You just stay away from the meth and booze, eat some fresh food, drink lots of water...and your mind begins to work.

It can be fun to visit but not too sure I would want to live there.
Are the drunken meth heads armed? (half that I have met in the desert are) Armed drunken meth heads keep life interesting.

Aside from everything else the desert has its own beauty, I hope you can still enjoy that. It is a free and wild place.

[aitch10]

Yup. There is no cure - yet - and I am certainly not going to deprive myself of foods that I love because some hippie or quack says to or because some other MSer has anecdotal evidence that it helps them.

I love food too much! If I thought for a second that these diets could repair my myelin then I'd do it in a heartbeat, but they can't.

[Shebjo]

Ok, so I'm feeling a bit frustrated and need to vent.

I know people mean well but I am so tired of people I know and barely know insisting I try the new fad diets or other things to cure MS. If it's some new idea, after 4 years of agony, believe me, I've already tried it.

As far the new fad diet, it really frustrates me. I healthy diet is good for anyone but I have a few problems with fad diets. First, they haven't been around long enough to have long-term research done to support their claims. Secondly, they often have you cut out things that are good for a lot of things, they often have you cut out things that are high in nutrients that are a must for a healthy diet. Thirdly, what works for one person may not work for the next, we are all different. The last two, some of these diets require a diet consisting of expensive foods that someone like myself just can't afford. And lastly, wow all that work to prepare the meals. Most days I don't have the stamina or strength to cook a meal. I rely on things that I can separate into daily amounts, like carrots, fruits, and other things. Sometimes just getting up to pop something in the microwave is a task.

So these are the things that frustrate me, and I can't tell them to stop or else I get accused of not wanting to get better. I try my best to eat a healthy diet but sometimes it's just not feasible. And a huge thing for me is research. They fill it with a bunch of stuff that suits them. Of you look at the actual research the trials are not carried out in a proper manner, and can't possibly know the long term outcomes. I even feel that way towards a lot of medicine but sometimes you'll try anything.

Anyone else feel this way? Or am I being stupid. I just hate when stuff is being pushed on me all the time when the people pushing it fall for every new fad and just because Dr. Oz pushes it, it must be great!! He has agendas too, this is how he makes money. Not that I don't believe he is all wrong, but I'm sure you understand what I'm trying to say.

Maybe they are just sick of seeing me miserable or tired of hearing my struggles but if they are my true friends they should stand behind me and respect how I choose to manage my illness. Maybe they are frustrated because I have to take so many breaks when we go out but that I believe will never change and I have to find ways to manage it and find "work arounds" one of which is not to push myself but I still need to have fun once in awhile or else all my fighting is for nothing.

Sorry for the rant, just frustrated and a little mad.
Hope I posted in the right place as well

Hi. I just wanted to put in my two cents. Besides diet suggestions, I had a work colleague suggest something else- that my daughter play with balls (the ones that are the sizes and weights of tennis balls ).
I am the mother of 11 year old twin girls -one twin has been diagnosed with CIS and is still high risk of getting MS. The colleague said she read that by playing or using these balls in therapy can prevent her from getting MS.

[misslux]

Hi. I just wanted to put in my two cents. Besides diet suggestions, I had a work colleague suggest something else- that my daughter play with balls (the ones that are the sizes and weights of tennis balls ).
I am the mother of 11 year old twin girls -one twin has been diagnosed with CIS and is still high risk of getting MS. The colleague said she read that by playing or using these balls in therapy can prevent her from getting MS.

Oh goodness Where do people come up with this stuff?

[Jrasted79]

oh my, playing with balls. I wonder where she heard this one because it sounds like something an ignorant person most likely pulled off the top of their head.

Someone suggested a low gluten diet and I voiced my frustrations with my mom who usually agrees with me about this sort of thing. Well she had me come over today and talk to this guy who swears by the low gluten diet. Although all he has is joint issues.

I said i'll try it for a month but I have so many more problems than just joint problems and who knows what is really causing the pain, I don't really think it is a "joint" issue. I mean if you arms or legs hurt people automatically assume you have joint problems. I think a lot of the pain is neurological an not caused from problems at the joint.

The only reason I am going to give it a month is because, like I mentioned before, if you don't try it people think you don't want to get better. I don't want my mom to think that way. I also think she wants to see if I will follow it through. I have a problem following through on most things but its not because I don't want to, I just never know how I am going to feel day to day, hour to hour so it is hard to plan things and follow through. just like my sewing. I have a quilt I have been working on for a year. I would love to finish it quickly but it hurts so I get to it when I am having a great day which is seldom.

Maybe she will lay off me if I stick with it for a month.

Ugh I just want to do what makes me happy

[ffjosh]

Not everyone is the same. That is why "diets" dont work

You need to experiment and see what works for you.

For me I can eat about whatever I want as long as it dosent have carbs in it.

For some reason carbs make me gain weight and make me feel sick.

I could eat 1,000 calories in bread and gain 10 lbs.
I could eat 10,000 calories in meat and not gain a lb.

[knitmeapie]

Preach!

I am sick of health advice from non medical professionals in general. No, I can't "beat MS with the Paleo Diet" because it's INCURABLE! Also, diets don't work. All testing and medical evidence shows that a balanced diet with lots of variety and produce is best (excepting special circumstances).

What we eat is no one else's business - same with our treatment.

Dr. Oz is a stupid quack and I am sick of hearing about his pseudomed nonsense.

In short, OP, you are most definitely not alone.

[KateA2]

Yep. In desperation I tried the Wahls diet, which didn't agee with me at all/left me exhausted with migraines. Then tried the Jelenik diet, which wasn't too far off from my usual diet, and I felt pretty good, but...Meh. I still have MS and I started to pine/obsess about donuts, yogurt, butter, triple cream Brie, and all kinds of things.

Now I eat what I want, with lots of fruit/veg. I figure since I don't (haha, can't) drink caffeine or alcohol, I have to have some sort of vice, right?

The latest fad at work is "no sugar, gluten, dairy, legumes, fruit, or high-fiber" diet. Let me tell you there are a bunch of ashen-faced witches grumping around there. I think it is eating disorder behavior become somehow socially-accepted. Of course everyone feels "amazing" and I should TRY it, it will cure all. Sigh.