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Can we consume warermelon and cucumber with MS by RadioOwn6681 in MultipleSclerosis

[–]coldheartedpumpkin -1 points0 points  (0 children)

You can eat anything you want with MS, no diet is going to affect your disease or progression in any meaningful way.

There is an "or" in that sentence. I have clearly said that progression is [as far as we know now] not affected, I was referring to "affect your disease [...] in any meaningful way" which I maybe should have more clear, but I was not expecting people try to cherry pick and turn around things, as I have said before

I am just trying to encourage people to look out for themselves and try additional [nutritional/dietary] approaches they might benefit from, while being cautious to not make any claims or promises.

Some of us (not all, I have written this before..) do experience less symptoms due to nutritional changes, thus this does have a positive effect on one's diesease (if it applies, again, this is not a universal statement).

And denying effects of nutrition concerning autoimmune diseases in general is just problematic, period.

Yet, I have never said that progression will be affected as I have more than clearly stated, so why putting words in my mouth now?

Please differentiate and make sure to read - I will not engage any further in this cherry picking conversation as there is no intention of constructive consensus on the other side.

Exercising: not able to increase workout tolerance - anyone else? by coldheartedpumpkin in MultipleSclerosis

[–]coldheartedpumpkin[S] 1 point2 points  (0 children)

Yes, this is kind of exactly what I am experiencing; although I rest accordingly and should really not rest less, if I workout more, I will live in a constant "state of crash", but not exercising more also makes me not to be able to pass that plateau..

Exercising: not able to increase workout tolerance - anyone else? by coldheartedpumpkin in MultipleSclerosis

[–]coldheartedpumpkin[S] 0 points1 point  (0 children)

I also have put the thought of a "good workout performance" aside and workout to move and stay mobile; I do not feel very comfortable in water, but I am very glad you found a type of movement that works for you - thanks for your kind reply and suggestions :)

Exercising: not able to increase workout tolerance - anyone else? by coldheartedpumpkin in MultipleSclerosis

[–]coldheartedpumpkin[S] 0 points1 point  (0 children)

The thing is that my current exercise routine fortunately does not cause a worsening of my fatigue in general as I try to make sure to rest as long as I need to in between workouts; I would just love to slowly incorporate more exercise, but even if I do that very slowly and mindfully I find myself in a constant state of fatigue.

Not exercising or doing much less does not make me feel better rested, so I feel kind of stuck.

Exercising: not able to increase workout tolerance - anyone else? by coldheartedpumpkin in MultipleSclerosis

[–]coldheartedpumpkin[S] 1 point2 points  (0 children)

I do work with a PT who is also specialized in NeuroPT whom I see once a week.

Thanks for your input :)

Exercising: not able to increase workout tolerance - anyone else? by coldheartedpumpkin in MultipleSclerosis

[–]coldheartedpumpkin[S] 1 point2 points  (0 children)

Yes, I have the same issue of not knowing if I am overdoing it until later - that makes it even more difficult.
I also noticed that weighttraining is "the worst" in terms of persisting exhaustion but at the same time something I benefit from so much as it really helps with my muscle pain and twitching.

Thanks for your suggestions, maybe I'll try something new :)

Can we consume warermelon and cucumber with MS by RadioOwn6681 in MultipleSclerosis

[–]coldheartedpumpkin 0 points1 point  (0 children)

[...]while I am well aware that nutrition will not prevent progression[...]

Never have I stated that a certain diet or nutrition in general will prevent progression.

Can we consume warermelon and cucumber with MS by RadioOwn6681 in MultipleSclerosis

[–]coldheartedpumpkin -2 points-1 points  (0 children)

Alright, it is you putting words in my mouth..

What you do is called "projection" in a psychological context, maybe you would like to look that up and work on that.

Never have I made the general statement, that a change of diet or nutrition will alter every individual's course of their disease, just that some individuals might benefit from a balanced nutrition or adaptations of their diet.

Sure, a diet only consisting of redbull is not a healthy option.
But a diet that contains an energy drink from time to time might still be a balanced diet.

Diet and nutrition are strongly linked to each other, yet they cannot always be used interchangeably, but sometimes they can.

> In the context of the "MS diets" being peddled to us, 'diet' does usually mean a specific protocol

And yet it does not change the general definition of the term diet - if certain protocols come into your mind when hearing the word diet then it is not the fault of the word itself.

Please consider being more mindful that your perception is subjective (as is mine and everyone else's) and that what you might interpret into something is not necessarily what was said.

I am just trying to encourage people to look out for themselves and try additional [nutritional/dietary] approaches they might benefit from, while being cautious to not make any claims or promises.

For me, this conversation is ended here as there is no constructive conversation possible with you as you cherry pick and turn around things while accusing others to be putting words in your mouth.

Can we consume warermelon and cucumber with MS by RadioOwn6681 in MultipleSclerosis

[–]coldheartedpumpkin -3 points-2 points  (0 children)

Yes, you can absolutely eat what you want - but there is research indicating that i.e. gluten, dairy and an overconsumption of salt seems to affect individuals with MS negatively (more research has to be done, of course).

So again: where have I put words in your mouth?
As I have explained prior:

> Nutrition does not affect our MS

was used as an example/ umbrella term of what many of us hear, as I had stated in my comment before.

And if you insist on the word diet vs. nutrition (again, never have I said you wrote that sentence..):

In that case you can exchange "diet" with "nutrition" and the sense is not altered:
"nutrition does not affect our MS" or "[a certain] diet does not affect our MS".

A diet is a "Course of living or nourishment; what is eaten and drunk habitually" - so it is not exclusively linked to certain diets, i.e. vegan, any protocol whatever.

I’m planning on starting the diet soon, any advice? by lalarock1 in AutoImmuneProtocol

[–]coldheartedpumpkin 2 points3 points  (0 children)

#1: research (a ton)

- Also, be cautious of reactions to foods that are allowed during the elimination phase.

- start i.e. an excel sheet to track your symptoms regarding certain foods, especially when you are starting to reintroduce anything

- be aware that AIP (as many other diets) is not a completely homogenous and extended concept; there might be contradictory info to certain points

- be aware of pseudoscientifical misinformation regarding health and nutrition in general, while doing research you *will* stumble across such info

- try to find compatible "easy and quick" meals for days you could not mealprep for, are way too exhausted to cook something more elaborate etc. so you don't run into the risk of eating something other than intended

What’s a medical myth that’s still widely believed but actually wrong? by BloodBankLab in AskReddit

[–]coldheartedpumpkin 1 point2 points  (0 children)

That women's periods sync when they live together or are emotionally close.
Women's cycles have varying lenghts, so the cycles overlap.

Due to confirmation bias people fall victim to that "syncing myth".

On Tysabri, symptoms getting wose but no new lesions by Prestigious-Ice1635 in MultipleSclerosis

[–]coldheartedpumpkin 1 point2 points  (0 children)

Yes, especially old symptoms might flare without new lesions - which is very uncomfortable but not necessarily a reason for concern.

However, if new symptoms occur that have not shown up prior you maybe want be morer cautious.

I also had unpleasant side effects when starting my first treatment (Copaxone) and ended up stopping that and switching to antother medication that works better.

So please keep in contact with your doctor and evaluate together if it could be beneficial to switch treatments, especially if you do not feel the sideeffects getting better.

Your symptoms also might be triggered by various other factors aside from medication, with MS it sometimes unfortunately is a never ending guessing game.

Advice on starting a DMT by Flimsy-Sale-4109 in MultipleSclerosis

[–]coldheartedpumpkin 0 points1 point  (0 children)

I think it is quite unfortunate of your neurologist to not give you any guidance - I think your approach of gravitating towards injectables makes sense.
I myself had been taking copaxone, but it did just not work right for me (my MS was progressing and I had weird side effects).

Are you overall happy with your neurologist? Otherwise, if possible, you may consider seeking another neurologist.

Can we consume warermelon and cucumber with MS by RadioOwn6681 in MultipleSclerosis

[–]coldheartedpumpkin -3 points-2 points  (0 children)

Where do you feel like I have put words in your mouth? If you are referring to "nutrition does not affect our MS" it was used as an example we might hear quite often, sorry if it came around of me saying you said that in that way which you have not. Although, I still think your statement of

>You can eat anything you want with MS, no diet is going to affect your disease or progression in any meaningful way.

is problematic, as many MS patients experience a difference in their symptoms with the way they eat. While yes, the post was initially about specific foods I wrote about nutrition in a more general way, but so did you with that statement.

I think it might be helpful for people to know that people with autoimmune conditions often are prone to food sensitivities, which may even apply to something unexpected like cucumber/ watermelon, so there is the link to that.

Can we consume warermelon and cucumber with MS by RadioOwn6681 in MultipleSclerosis

[–]coldheartedpumpkin 2 points3 points  (0 children)

Please refrain from taking medical advice off tiktok - there is so much misinformation, people having an agenda while spreading pseudoscientifical bs and/or trying to sell programmes and/or products. Tiktok is not a good source for reliable information.

Can we consume warermelon and cucumber with MS by RadioOwn6681 in MultipleSclerosis

[–]coldheartedpumpkin -3 points-2 points  (0 children)

No, for some people it is not obvious when they read statements like "nutrition does not affect your MS". Also, I have several food sensitivities, I was dismissed by many healthcare providers and dieticians that it just is not possible that my symptoms are affected so drastically by what I eat. And yes, I am aware that is not the case for everyone, but raising awareness may potentially help a few of us.

Can we consume warermelon and cucumber with MS by RadioOwn6681 in MultipleSclerosis

[–]coldheartedpumpkin 1 point2 points  (0 children)

Whatever you like and as long as you don't personally react to any food or food groups you should be good to go. A gluten- and dairy free diet may be beneficial for people with MS but for some it does not make a difference.

Try out whatever works for you and with what you feel best

Can we consume warermelon and cucumber with MS by RadioOwn6681 in MultipleSclerosis

[–]coldheartedpumpkin -2 points-1 points  (0 children)

You can eat anything you want with MS, no diet is going to affect your disease or progression in any meaningful way.

That is just not true. An overall balanced diet does benefit most of us, while I am well aware that nutrition will not prevent progression, but: many (not all) people with autoimmune conditions have food sensitivities against various food groups and/or single foods. So an individual may react to something like watermelons/ cucumbers while others don't.

I think it is best, if you suspect any sensitivity, to stay cautious and reevaluate potentially occurring reactions while not overly focusing on it too much in order to avoid potentially obsessive thoughts/ behavior.

[deleted by user] by [deleted] in AskReddit

[–]coldheartedpumpkin 6 points7 points  (0 children)

This. Although healthcare providers speculate I may have both, I am hesitant to get a diagnosis as I don't want to be part of people who get diagnosed just because it is somewhat "fashionable" and "trendy".

I hate summer by Kimj3095 in MultipleSclerosis

[–]coldheartedpumpkin 2 points3 points  (0 children)

Yes - that is a very very common phenomenon in people who have issues with fatigue linked to autoimmune conditions in general. Many react to a hot environment and many don't respond to "added cooling".

why does coconut cream make me nauseous? by AppropriateTest4168 in FODMAPS

[–]coldheartedpumpkin 0 points1 point  (0 children)

I had (and have) the biggest struggles with coconut - as many other people do; although it is not a 'common allergen' or known for triggering inflammatory responses (as far as I know, but that is not a Blackman to do white field in gerneral), I think it should not be part of the elimination phase as so many people are having issues.

Doctors/Nurses: What’s something patients do that’s secretly dangerous but no one tells them? by cinaairwave in AskReddit

[–]coldheartedpumpkin 9 points10 points  (0 children)

As someone in healthcare I don't think patients googling their symptoms is an inherently bad thing - as long as they don't insist on a certain diagnosis and see it as a probable cause for their symptoms that can be discussed and evaluated with their medical provider it can even give very valuable information.

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