The Fibromyalgia and ME/CFS Low Blood Sugar and Diet Poll

[Cort]

[fright]

[/fright]Recent blogs have suggested that ME/CFS and FM could be similar in some ways to diabetes. So what about low blood sugar?

Carbohydrate problems have been a core part of my ME/CFS/FM since the beginning. Not for 30 years have I been able to tolerate something like a candy bar - or even most energy bars - without slathering it with nut butter. Deserts are out unless they are accompanied by a meal and they're mostly out anyway.

Ditto with things like baked potatoes, small grain rice and popcorn; the best diet for me is a low glycemic diet.

If I miss a meal I usually pay by feeling spacey and out of it, yet a test very early on didn't suggest I had hypoglycemia (go figure).

How about you? How you had a test for hypoglycemia, how do you handle carbohydrates and does skipping meals bother you?

Suggestions for additions to the poll are welcome

 

[SB_1108]

Suggestions for the poll:

I was negative for hypoglycemia but have been diagnosed with pseudo-hypoglycemia.

&

High glycemic foods such as potatoes, white bread, rice cakes, popcorn make my symptoms BETTER.

 

[Cort]

Suggestions for the poll:

I was negative for hypoglycemia but have been diagnosed with pseudo-hypoglycemia.

High glycemic foods such as potatoes, white bread, rice cakes, popcorn make my symptoms BETTER.

Will do

One site proposes a reason for it: increased glucose extraction by the tissues because of problems with capillary flow...reduced glucose and circulation problems - that sounds like ME/CFS/FM to me

http://care.diabetesjournals.org/content/37/5/e85.full

The pathophysiology of falsely low blood glucose in such patients is believed to be due to decreased capillary flow that leads to deceleration of glucose transit through tissues and consequently increased extraction by the tissues (4).

 

[SB_1108]

Thanks!

Pseudohypoglycemia is an event when a person experiences typical symptoms of hypoglycemia but with a measured plasma glucose concentration above 70 mg/dL. The term was used in the past to describe disparity in actual and measured plasma/ capillary glucose. Plasma glucose levels are within reference ranges in all such patients while they are symptomatic.

http://emedicine.medscape.com/article/124795-overview#a1

 

[SB_1108]

Oh one more thing... there is no actual test for pseudo-hypoglycemia because the patient experiences symptoms but blood results all appear normal.

 

[Rachel Riggs]

[fright]View attachment 1875 [/fright]Recent blogs have suggested that ME/CFS and FM could be similar in some ways to diabetes. So what about low blood sugar?

Carbohydrate problems have been a core part of my ME/CFS/FM since the beginning. Not for 30 years have I been able to tolerate something like a candy bar - or even most energy bars - without slathering it with nut butter. Deserts are out unless they are accompanied by a meal and they're mostly out anyway.

Ditto with things like baked potatoes, small grain rice and popcorn; the best diet for me is a low glycemic diet.

If I miss a meal I usually pay by feeling spacey and out of it, yet a test very early on didn't suggest I had hypoglycemia (go figure).

How about you? How you had a test for hypoglycemia, how do you handle carbohydrates and does skipping meals bother you?

Suggestions for additions to the poll are welcome

Yep - me too!!!! But I DREAM of cake.....

I do best with small amounts of brown rice, legumes, quinoa or butternut squash as my carbs - unfortunately, I have problems if I go without any carbs as well so a ketogenic diet is out of the question for me!

If I am going to have a sweet treat, I always eat a boiled egg first - it helps a bit. I too, find that almond butter is a great equalizer and reliable in a pinch!!

My understanding was that blood sugar issues in CFS were related to motility...?

 

[Rachel Riggs]

I'm curious to know if others have the same experience: when I eat cake or cookies, I have an increased heart rate, shallow breathing, and general ickiness for about 2 hours...

 

[Challenging Life]

I came down with a bad stomach bug on Christmas day of 1982. Before that day I was addicted to sugar and ate it non stop. After that day I became very carbohydrate sensitive and couldn't touch anything with sugar in it without paying dearly. In 1983 I had a glucose tolerance test in which I had a very bad reaction during the test and both the lab technician and my doctor said it was the worst case of reactive hypoglycemia they had ever seen. In retrospect this is really when my CFS began as I limped along trying to keep up with everyone but it wasn't until the fall of 1988 that I completely collapsed, ended up in the hospital and was formally diagnosed with CFS. When I went back home I was bedridden for quite a while.

As the years went by, I slowly improved and eventually got to the point I could do about 50% of what healthy people could do but it was a struggle. Then in 2009, I very slowly started to go downhill and there was nothing I could do to stop it. It was extremely slow but very noticeable over time. In early 2015, I got a really bad upper respiratory infection and my doctor gave me a really strong broad spectrum antibiotic to take. My already messed up gut got even more messed up after that. Then a couple of months later I got another bad upper respiratory infection and was given another antibiotic to take. I believe these two rounds of antibiotics is what triggered an extremely bad relapse last year. I ended up in the hospital on the neurology floor for several days. I was virtually bedridden and unable to even swallow my food. I came within a hair's breadth of being placed on a feeding tube. I was allowed to go back home and was assigned to a visiting nurse's association with a nurse, physical therapist and speech therapist coming to my house. Of course none of them had any inkling of what a someone with CFS could realistically be expected to be able to do.

I was having so much trouble swallowing that I was getting at most 500 calories a day in me. It took a really long time but very slowly my ability to swallow started to improve and I can now eat again. Gut issues have always been a big part of my CFS. I'm still very carbohydrate sensitive and haven't touched anything with sugar in it for 33 years. I also get severe GERD. Back in 2006, I started getting bad stomach bugs with high fevers for several days every 3 months like clockwork. After one of these episodes I went to the emergency room with severe chest pains and the blood they drew showed I had high liver enzymes. A gall bladder function test showed my gall bladder was sluggish and they ended up removing my gall bladder which the report on it came back saying that it showed signs of chronic inflammation. Having my gall bladder removed did stop the episodes of "stomach flu" I had been having every 3 months but my liver enzymes remained elevated for several years after that and my gastroenterologist was unable to find a reason for it.

I have been reading all of the recent studies that have been done on the gut microbiome with a great deal of interest and a great deal of hope. Since all of my problems seemed to have begun with a bad stomach bug and my recent severe relapse was precipitated by 2 rounds of strong antibiotics, I strongly believe that my gut microbiome could very well be at the root of my problems.

Has anyone else noticed that it seems like most people with CFS, or at least the ones I've seen, are either of normal weight or underweight. I know I've gone back and forth from being underweight to being normal weight depending on how bad my gut is at the time. You would think we would all be morbidly obese from all the years of being forced to be so sedentary. This alone makes me think there has be something wrong with our metabolism.

 

[Cort]

Oh one more thing... there is no actual test for pseudo-hypoglycemia because the patient experiences symptoms but blood results all appear normal.

Oh one more thing... there is no actual test for pseudo-hypoglycemia because the patient experiences symptoms but blood results all appear normal.

I wonder how they determine what clinical pseudohypoglycemia is - a "psychological disorder". I guess it is when people without hypoglycemia report relief after eating.....that would be me....I don't believe it for a second.

The term clinical pseudohypoglycemia is used when patients with personality and psychological disorders report relief of symptoms (eg, mental dullness, disorientation, confusion, palpitations) after eating. Plasma glucose levels are within reference ranges in all such patients while they are symptomatic.[3, 4]

 

[Cort]

I never ever eat something like cake or cookies without something like pnut butter to bolster me...I think it would be horrible!

I'm curious to know if others have the same experience: when I eat cake or cookies, I have an increased heart rate, shallow breathing, and general ickiness for about 2 hours...

 

[Cort]

I came down with a bad stomach bug on Christmas day of 1982. Before that day I was addicted to sugar and ate it non stop. After that day I became very carbohydrate sensitive and couldn't touch anything with sugar in it without paying dearly. In 1983 I had a glucose tolerance test in which I had a very bad reaction during the test and both the lab technician and my doctor said it was the worst case of reactive hypoglycemia they had ever seen. In retrospect this is really when my CFS began as I limped along trying to keep up with everyone but it wasn't until the fall of 1988 that I completely collapsed, ended up in the hospital and was formally diagnosed with CFS. When I went back home I was bedridden for quite a while.

As the years went by, I slowly improved and eventually got to the point I could do about 50% of what healthy people could do but it was a struggle. Then in 2009, I very slowly started to go downhill and there was nothing I could do to stop it. It was extremely slow but very noticeable over time. In early 2015, I got a really bad upper respiratory infection and my doctor gave me a really strong broad spectrum antibiotic to take. My already messed up gut got even more messed up after that. Then a couple of months later I got another bad upper respiratory infection and was given another antibiotic to take. I believe these two rounds of antibiotics is what triggered an extremely bad relapse last year. I ended up in the hospital on the neurology floor for several days. I was virtually bedridden and unable to even swallow my food. I came within a hair's breadth of being placed on a feeding tube. I was allowed to go back home and was assigned to a visiting nurse's association with a nurse, physical therapist and speech therapist coming to my house. Of course none of them had any inkling of what a someone with CFS could realistically be expected to be able to do.

I was having so much trouble swallowing that I was getting at most 500 calories a day in me. It took a really long time but very slowly my ability to swallow started to improve and I can now eat again. Gut issues have always been a big part of my CFS. I'm still very carbohydrate sensitive and haven't touched anything with sugar in it for 33 years. I also get severe GERD. Back in 2006, I started getting bad stomach bugs with high fevers for several days every 3 months like clockwork. After one of these episodes I went to the emergency room with severe chest pains and the blood they drew showed I had high liver enzymes. A gall bladder function test showed my gall bladder was sluggish and they ended up removing my gall bladder which the report on it came back saying that it showed signs of chronic inflammation. Having my gall bladder removed did stop the episodes of "stomach flu" I had been having every 3 months but my liver enzymes remained elevated for several years after that and my gastroenterologist was unable to find a reason for it.

I have been reading all of the recent studies that have been done on the gut microbiome with a great deal of interest and a great deal of hope. Since all of my problems seemed to have begun with a bad stomach bug and my recent severe relapse was precipitated by 2 rounds of strong antibiotics, I strongly believe that my gut microbiome could very well be at the root of my problems.

Has anyone else noticed that it seems like most people with CFS, or at least the ones I've seen, are either of normal weight or underweight. I know I've gone back and forth from being underweight to being normal weight depending on how bad my gut is at the time. You would think we would all be morbidly obese from all the years of being forced to be so sedentary. This alone makes me think there has be something wrong with our metabolism.

What a story Challenging Life. It really does sound like your gut is a key factor for you. As you note first there was the stomach bug / then there were the antibiotics / then the stomach bugs again...is it your gut flora? I suppose that you've tried probiotics and perhaps kefir, sauerkraut and other means of replenishing your gut flora?

 

[Katie]

I like sweets but they don't like me! I over-did everything last week while on holiday with kids and grandkids. Too many sugar treats, too many sweet drinks like lemonade which I love and French toast one morning-loved it but man am I paying for it now. Increased pain, terrible exhaustion and bloating. This week I'm back to my regular diet, low or no sugar, no gluten, most grains except rice, no alcohol no caffeine-except one cup of green tea).
When I don't eat regularly, including snacks I get very light-headed and "dopey"-can't think straight.

 

[Kat]

I did a 6-hour glucose tolerance test years ago (15+), and according to the doctor it was "within the range of normal" regarding hypoglycemia. However a chiropractor looked at the results and told me the pattern fit with Reactive Hypoglycemia. I've been on a sugar control/specific carbohydrate diet ever since, which I find necessary.

Is pseudo hypoglycemia the same as reactive?

 

[Karmin]

Maybe you could add insulin resistance and high leptin? I had hypoglycaemia for some years as I was going downhill, and ended up with insulin resistance. Also i have very high leptin levels. All this despite only weighing 52kg (115 lbs) (though that is abt 15lbs higher than my pre-illness weight)

 

[Cort]

I did a 6-hour glucose tolerance test years ago (15+), and according to the doctor it was "within the range of normal" regarding hypoglycemia. However a chiropractor looked at the results and told me the pattern fit with Reactive Hypoglycemia. I've been on a sugar control/specific carbohydrate diet ever since, which I find necessary.

Is pseudo hypoglycemia the same as reactive?

Another type of hypoglycemia - who knew? I wonder if @SB_1108 knows?

 

[Challenging Life]

What a story Challenging Life. It really does sound like your gut is a key factor for you. As you note first there was the stomach bug / then there were the antibiotics / then the stomach bugs again...is it your gut flora? I suppose that you've tried probiotics and perhaps kefir, sauerkraut and other means of replenishing your gut flora?

My problem has been that when my gut is at it's worst there are very few foods I can tolerate, mostly just plain rice, poultry, green beans and a few others. Definitely nothing in the least bit acidic or vinegary. I've been taking probiotics and just recently been able to get back to eating yogurt and kefir. For me it's a very slow process of adding new foods back in one at a time. I've been reading a lot about the AIP (autoimmune protocol) and Paleo diets as well as prebiotics and probiotics. It gets frustrating at times. It just seems like eating and nourishing yourself shouldn't have to be this complicated but I will do whatever it takes to improve.

 

[tearydawn]

Funny I have issues that seem like hypoglycemia, and have for years. I have a home testing kit which was prescribed several years apart to check my levels and has always shown normal even when I'm shaking and spaced out. Yet I feel better after eating. This is not an every day occurrence, but happens when ever I have a flare of another undiagnosed illness which I'm not sure is related to my CFS. Being observed for MS.

 

[Not dead yet!]

After dealing with this for years, I've decided a few things... Christmas without cookies is too depressing, and Easter without Peeps is likewise. The keto diet has helped me eat such things in moderation, or actually in small amounts like my mom always told me to.... and with large spaces between them.

The worst foods for me are gluten foods and packaged of any kind. Even gluten free frozen meals are out, don't know what they do to them, but they're "dead foods" as far as my body is concerned. I get less reaction from gluten free cheese crackers. Actually being sick has made me learn to cook extremely well. Cornmeal battered fried catfish... yummy and cheap.

For those who like to cook things (energy permitting): Making roux with millet flour works perfectly. Other gluten free flours work too, but that one is great. It's my secret for how to eat greens without crunching through tons of salad. Add frozen chopped greens, some water or milk, plus salt, and bingo. I would add onions, but my gut doesn't like them.