Why do I have awful puffy eyes and other people who sleep terrible with CFS/M.E look ok?

[Jaylfc9]

Hi all this is my first post, im 24 and I live in the UK and I have had CFS for 11 years . One of the first things people noticed about me was my puffy eyes as a child. Does anyone know what causes puffy eyes in relation to CFS. My sleep is terrible, very poor quality and duration. However, I very rarely get a great sleep which is odd. I have met people who have CFS/M.E who have terrible sleep too but eyes look fine so im puzzled and wondering if something else is going on.

Thanks

Jay

 

[Ema]

Hypothyroid is a biggie for puffy eyes.

 

[nanonug]

One of the first things people noticed about me was my puffy eyes as a child.

Things that come to mind as possible explanation: anemia, either caused by iron or some B vitamin deficiency. Also, vitamin K deficiency. You may also have mutations in the MTHFR gene, leading to abnormal folate metabolism. All of this is testable within the confines of mainstream medicine.

Good luck!

 

[Jaylfc9]

Thanks for the replys!

I have been tested for Hypothyroidism, B Vitamin Def and anaemia and all showed normal. As for mutations in the MTHFR gene thats very interesting but getting tested for that in the UK I think would be next to impossible

Thanks you again for the responses

James

 

[adreno]

As for mutations in the MTHFR gene thats very interesting but getting tested for that in the UK I think would be next to impossible

https://www.23andme.com/

 

[Jaylfc9]

Thank you Adreno

 

[taniaaust1]

I too get very puffy and often also very dark under my eyes, but I only get that if Im going throu a bad patch of this or if Im not getting enough sleep. I thou did have that issue for many years due to the ME, it would be so bad at times that I looked like a bullfrog.. so swollen I could hardly see out of my eyes.

Allergies of all types also can be a common cause of this.

When I was in some research studies.. I found I could tell who were the ME/CFS patients who were in the study in the hospital waiting room from the others, not just by body postures but also by skin looks (pale/sickly faces) and by the puffy eyes..

There is a big list of causes of this at http://en.wikipedia.org/wiki/Periorbital_puffiness (interestingly mono is on that list.. so maybe those with reactiviting EBV also could have this)

 

[Jaylfc9]

I have never slept well and been pursuing the cause as a sleep disorder for about 5 years before my doc said ok im extensively test you and he sent me off for sleep studies full blood panels and every test came back normal! Then I was told I had CFS, I cant tolerate gluten or dairy but im following the stone age diet as I cant see any other option. it is a horrible illness ive always said if i can fix my sleep I can get over this. I am looking into adrenal testing and hormone panels.

 

[nanonug]

I cant tolerate gluten or dairy [...]

You may want to have a look at this, then: LEAKY GUT SYNDROMES: BREAKING THE VICIOUS CYCLE.

 

[Ema]

I have been tested for Hypothyroidism, B Vitamin Def and anaemia and all showed normal.

Remember "normal" is very different from optimal.

Most people feel best with FT4 about 1.4 and FT3 in the top third of the range. If you only had TSH tested and were proclaimed fine based on that, I would consider revisiting this issue.

 

[Crux]

Hi Jaylfc9;

Puffy eyes may also be called periorbital edema, if there's enough breath to use those many syllables.
I use this symptom to tell me that I may need more potassium.

Taking potassium has also improved my sleep.

Recently, I've found that taking zinc has improved my sleep, and I don't need to take as much potassium. I've read that it can help balance electrolytes by improving intestinal absorption.

Sometimes insomnia can be the result of zinc deficiency with a relative excess of copper. But we need copper for many functions, and taking zinc alone for a time can cause a reversal of the imbalance. So, I take a supplement with 15mg. zinc and 1mg. copper daily in the morning. The improvements have been slow and steady. ( I'm at 3 1/2 mnths.)

 

[jeffrez]

Allergy, hypothyroidism. As Ema rightly said, what's considered "normal," and what's optimal for the person are very often two different things.

 

[Jaylfc9]

Thank you , I have thought about asking for my results from my GP an actually seeing my levels im in the process of saving to see a CFS doc here in the uk so I think I will wait until then

 

[CJB]

Dust mites. Oh, and the big VW-sized chunks of pollen that are flying around here.

 

[Sherlock]

a simple test: see if an anti-histamine before sleeping helps

 

[Jaylfc9]

I cant find an anti histamine that isnt glazed with lactose

 

[Sherlock]

I cant find an anti histamine that isnt glazed with lactose

the bottle I have at hand is the capsule form, from Medicine Shoppe, USA

I sometimes get not just eye puffiness but also the dark circles, and diphenhydramine helps a lort with that. When I'm in a bad period, I also sometimes get sore feet in the morning and diphenhydramine also alleviates that. (There are lots of mast cells [which produce histamine] in impact areas like hands and feet.)

 

[Jaylfc9]

Could I ask what brand it is? As I live in the UK so I can try and order it online

 

[Sherlock]

Jay, "Medicine Shoppe" is a chain of pharmacies in the U.S. I bought mine in a local store - but I just checked and surprisingly they do not sell online. As an parallel example, what I have in hand is like this:
http://www.amazon.com/Diphenhydramine-50mg-Capsules-100ct-btl/dp/B000GG5OY0

except that mine are 25mg.

So then I checked at Amazon UK, and see they don't have any:
http://www.amazon.co.uk/s/ref=nb_sb_noss?url=search-alias=drugstore&field-keywords=diphenhydramine capsules&x=13&y=19

Wow, different world, huh? I wouldn't have guessed things would be so different there.

Here are softgels, that's all I could find after a few minutes search:
http://www.discounthealthproducts.co.uk/diphenhydramine_hcl.htm

Diphenhydramine is the only thing that helps me with sleep, too, besides getting tired out from exercise.


Also, here is a questionnaire that purports to discover if a person has excess histamine. I score high on almost every point:
http://www.digitalnaturopath.com/cond/C446553.html

 

[taniaaust1]

I use an over the counter anti-histamine which is also a sleep aid for sleep.... Doxylamine Succinate. I dont thou know if it is gluten free or not (it doesnt say).