Take the poll: What are YOUR sensitivies?

[Woof!]

Hi all!

Here's the poll I've been promising. The reasons for doing this are two-fold:
(1) to share information about triggers, and
(2) to help members track down their individual triggers (the better to avoid them).

What I'm looking for are:
(A) triggers that DIRECTLY make your ME/CFS worse, and
(B) triggers that INDIRECTLY make your ME/CFS worse via stressful co-morbidities such as Sjogren's Syndrome, chronic migraines, vertigo or fibromyalgia

So, I'm not looking for basic allergies or issues like dairy-intolerance... just true triggers that, if you avoid them, your life with ME/CFS can be improved. After you take the poll, please send a post with further information by category.

As an example, here are my triggers:
starches - all to date (5/5)
grains - all except oatmeal (5/5)
processed sugars (3/5)
fish - shrimp only (5/5)
veggies - cauliflower, cucumber, broccoli, beans (5/5)
fruits - apples, pineapples, grapes, pears (5/5)
fragrances - (5/5)
smoke - (5/5)
mold & mildew - (5/5)
dust & dustmites - (5/5)
other environmental - cedar chips, talc
temperature extremes - any weather more than 82 or less than 50

Having triggers sucks, but they suck a lot less once you've identified and eliminated them from your life. THAT's taking your life back!

Thanks for filling out this survey!
Lynne

 

[Woof!]

I just thought of something... I should have listed three more choices...
( ) I have no triggers
( ) I think I have no triggers, but I'm not sure
( ) I think I have some triggers, but I have yet to identify them

 

[Woof!]

Fixed it!

 

[Wishful]

Your choices are too broad for me. I trigger on specific veggies, and specific molecules in other foods.

Nightshade toxins: solanine and tomatine
Goitrogens (Most if not all brassicas)
proline
Peroxynitrite scavengers (several spices are high in these)
Tryptophan and niacin were both serious triggers, but I haven't checked them lately
B2 was a problem before too, not sure now

I'll have to think more on this. I didn't keep a detailed and updated list of all the triggers since 2001.

BTW, your list makes me think that you have a problem with sugars (starches are sugars too), either via insulin response or involving the gut microbiome. Also, you should take talc off your list unless you test pure talc (no cornstarch added), just to avoid confusion. Talc is chemically inert AFAIK.

 

[Woof!]

Peroxynitrite scavengers (several spices are high in these)
BTW, your list makes me think that you have a problem with sugars (starches are sugars too), either via insulin response or involving the gut microbiome.

Sounds interesting. Which spices?
Also, I wouldn't be surprised if age-related changes in gut microbiome aren't playing a part in this for me.

 

[Springbok1988]

Mine gets much worse after stressful situations so I selected “others.”

 

[Judee]

It's a bit like which came first...the chicken or the egg.

Some things used to be a guaranteed trigger of some symptom or other.

For instance, if I ate egg I could be sure that would trigger a PEM crash along with severe heart pain the next day. Black tea is/was the same. (I haven't re-tested that one yet.)

However, I'm finding as I treat what I believe are infections, I can eat some things again without problems.

Now, I'm not going to go crazy on them but once in a while again is nice.

I really do believe what my allergist/environmental doctor said is true..."everything is cumulative."

So if we are dealing with one thing, adding another or several others on top of it ends up being the "straw that broke the camel's back."

 

[christiankatz]

My taste buds are extremely sensitive at times. I'm hypersensitive to textures, binding clothes, visual clutter, disorderliness, chaos, dishes in the sink , I can't be in the sun.

Oops, sorry if this is the wrong kind of answer. These things do trigger my ME or appeared when I got it.

 

[Woof!]

I really do believe what my allergist/environmental doctor said is true..."everything is cumulative." So if we are dealing with one thing, adding another or several others on top of it ends up being the "straw that broke the camel's back."

I couldn't agree more! The same thing happens to migraine sufferers. A little smoke exposure + a little extra sun exposure + eating something that triggered your Sjogren's eye irritation = one heck of a migraine
(whereas if all three of these things didn't happen, you may have gotten through the day without a migraine)

 

[Woof!]

With 19 people taking the poll so far, we're starting to get an interesting picture. Dare I hope for 50 people taking the poll? 100? (Hey, I often dream big.) How many members does PR have, anyway?

If you don't have symptom-triggers, the poll has a place for you.
If you think you might, but don't know which ones, there is a place for you, too!
Please spread the word and help me get to 50... (or more?)
Gentle hugs to all,
Lynne

 

[ljimbo423]

I checked the first 2, starches and grains. These are the 2 biggest triggers for me. High levels of stress will do it too but that don't happen very often. A diet high in starches and grains will destroy me within a week or 2 and leave me mostly bedridden and I usually function at about a level 6!

 

[Wishful]

Which spices?

Cinnamon, rosemary, turmeric, cloves, ginger. I think there were a couple more that I tested. My reactions seemed to match the studied effectiveness of the spices&herbs. Peroxynitrite is usually considered a bad thing, damaging molecules, but it's also important for cellular health in the right place and the right conditions. For me, since I think IDO and the kynurenine pathway is involved in my symptoms, peroxynitrite is the molecule that deactivates IDO, and thus removing it keeps the IDO molecules around longer, resulting in more TRP->neurotoxic kynurenines.

 

[Woof!]

Cinnamon, rosemary, turmeric, cloves, ginger.

Eek! I don't eat much rosemary (grow it, tho'), but the other spices I consume on a daily basis! So sorry you can't enjoy them...

 

[Woof!]

I checked the first 2, starches and grains. These are the 2 biggest triggers for me. High levels of stress will do it too but that don't happen very often. I diet high in starches and grains will destroy me within a week or 2 and leave me mostly bedridden and I usually function at about a level 6!

I totally understand!

I still remember the first time I passed up a Pain du Chocolat. I used to eat them daily, but once I learned starches and grains were triggering so much of what plagued me, no one could pay me enough to eat another one.

 

[ljimbo423]

I totally understand!

I still remember the first time I passed up a Pain du Chocolat. I used to eat them daily, but once I learned starches and grains were triggering so much of what plagued me, no one could pay me enough to eat another one.

I hear ya. I haven't had a piece of pizza or cake in years! It's just not worth the price of admission.

 

[Tammy]

So, I'm not looking for basic allergies or issues like dairy-intolerance... just true triggers that, if you avoid them, your life with ME/CFS can be improved.

Not sure about your explanation here but dairy definitely triggers my CFS.

 

[Woof!]

Not sure about your explanation here but dairy definitely triggers my CFS.

That's the kind of trigger I'm looking to identify. If it just made your tummy grumbly and you fart a lot, then it would be an intolerance. Thanks for taking the survey!

 

[Rufous McKinney]

I never hardly eat cinnnomin and cloves as they are contraindicated when the body is "overheated"..inflammed...(I do the chinese medicine approach)

Today's trigger was 12 sticks of incense outside my door, at my neighbors door. I had to write a giant note to request it be removed

 

[Woof!]

Today's trigger was 12 sticks of incense outside my door, at my neighbors door. I had to write a giant note to request it be removed

Eek! (Of course I'm the one shouting obscenities at the Febreeze and Gain commercials on TV. Poison!!!!)

Just last week, we got a new librarian at our little rural library and she brought with her some smelly plug-ins. Aargh!!! I gagged my way back through the door as fast as possible, then called her on the phone to let her know what they did to little kids with asthma and people like me (I always mention little kids with asthma first, 'cause more people relate to them). To her credit, she took her plug-ins home, but a week later, I still can't enter this public space. Sigh.

 

[Woof!]

I never hardly eat cinnnomin and cloves as they are contraindicated when the body is "overheated"..inflammed...(I do the chinese medicine approach)

Have you found cinnamon and cloves to cause trouble for you, or are you simply (and rightfully) being cautious?