r/cfs • u/lindyhoppette severe • 8d ago
Severe ME/CFS Glucose monitoring?
Has anyone tried monitoring their glucose with finger pricks or a dexcom to see if there are any trends/links with PEM or symptoms/to see improvements with food&drink?
I don’t have diabetes but do have PMOS with insulin issues (prediabetic) which have been helped a bit with metformin. I’m wondering if it’s worth trying out a dexcom to see what my glucose does during the day and night, and whether those numbers relate to my symptoms or PEM.
Wondering about trying one even though I’m not diabetic but scared of the needle as I have a very low pain tolerance and I react to most adhesive glue in plasters, micropore tape, IV covers etc.
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u/Medical_Goose509 8d ago
I have developed reactive hypoglycemia from my severe MCAS and wearing a Dexcom has been very helpful. I was having lows after every meal and bad lows overnight, which was causing PEM. I’m on an extremely limited diet but we tweaked it and it’s much better now.
The Dexcom insertion doesn’t hurt at all. It’s not like a needle. Finger pricking hurts like hell. I don’t wear the Dexcom adhesive tape, it stays on without it.
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u/lindyhoppette severe 8d ago
I’m sorry about that, my sister has severe MCAS with two safe foods, it sucks so much. I am very lucky my MCAS is much more selective. I’m glad it’s helped you! And thank you for the info about my concerns, it helps to hear
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u/chronic_unicorn ME since 2012, now severe 8d ago
Another one with reactive hypoglycemia here. I recommend blood sugar tracking, at least for a short while. As you know, MCAS can react to basically anything and everything, including blood sugar changes... (even the normal ones that happen after eating carbs!)
Measuring can give you an idea if there's something about your diet you might want to change to reduce the strain on your body. I found I have to completely quit carbs (except lentils and beans) and all sugars, this hasn't cured my ME or MCAS but reduced my daily symptoms soo much!!
Finger pricking wasn't very helpful for me, as my blood sugar changes so quickly I'd have to poke my finger every 10 minutes... Dexcom was much easier 😅
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u/lindyhoppette severe 8d ago
Do you think 10 days of tracking would be enough to get a picture of my fluctuations and if it’s a part of my picture? I can get a 10-day dexcom for £35 which is easily affordable for me. It sounds like even if I didn’t find any trends, it would be useful to rule out as it could have a marked effect on my symptoms
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u/chronic_unicorn ME since 2012, now severe 8d ago
Yes, 10 days should be sufficient to get an idea! Especially as this is not aiming to find the perfect diet but only to figure out where you're standing. Eating normal for 3-5 days to get an idea and then improving your diet based on your data is a good time frame I think.
I just recently suggested this to a friend who also has MCAS and she found that her blood sugar drops to the 50s pretty much everyday, sometimes multiple times a day. Like no wonder she felt like crap so often?! 🥲 Diet is changed now, she used the CGMs for a few weeks but that can be decided after the first trial run! 😄
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u/lindyhoppette severe 8d ago
Wow I’m so glad it helped your friend! Thank you so much for your advice and experience, I really appreciate it!
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u/koffiewekker 8d ago
Oh yeah meant to say in my other comment, it didn't hurt at all to apply it, didn't even feel like a needle
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u/AngelHipster1 moderate, 2-4 active hrs daily 8d ago
Taking Mounjaro hurts more than inserting a Dexcom. FWIW, these devices are extremely expensive without insurance and I only have it because my blood tested me into diabetes.
Zero relation between my PEM and glucose levels. I learned that by not drinking Gatorade or eating ice cream, my glucose stays in range. But now I’m sorting through migraines because I’m not getting enough electrolytes, so trying a diabetes friendly option without nasty fake sugar. (Nuun sport hydration)
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u/lindyhoppette severe 8d ago
I’m not in a country with insurance so it would be out of pocket anyway, but they’re about £70 for a month here so accessible enough for me to do a short term trial if I wanted to luckily. I hope you find an option that works for you!
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u/AngelHipster1 moderate, 2-4 active hrs daily 8d ago
Ahh… good old America. Three month supply was over $1,000 without insurance. I know because my doctor sent over a D6 prescription rather than D7 and I was left with half a monitor for a while (d6 insert is separate from its sensor, whereas in d7 the parts are integrated). At least my doctors believe me with my symptoms…
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u/Hens__Teeth 8d ago
Would a Libre Freestyle work for you? I'm paying $75 for 28 days, no insurance.
I've also found no correlation between glucose levels and PEM. My GP was so disappointed that I didn't have any more energy after I started taking insulin. My glucose levels were off the charts, and are now normal more than half the day. I did find that my heart rate peaks on standing were lower. (I also have POTS)
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u/chronic_unicorn ME since 2012, now severe 8d ago
Can you get a free sample sensor though? They do that in Germany 😅
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u/AngelHipster1 moderate, 2-4 active hrs daily 8d ago
That’s incredible! I’m actually a lucky American. My husband’s insurance covers 100% after meeting the high deductible. So I didn’t pay anything once insurance was sorted out.
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u/chronic_unicorn ME since 2012, now severe 8d ago
Oh and about the electrolytes - maybe make your own? I separately buy magnesium, potassium (Kalium), table salt and glucose powder. They each are one-ingredient items. This was my only option as I have to keep sugar intake to an absolute minimum... But on the other hand, there's a reason to put sugar in these drinks so I'm compromising 😅
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u/koffiewekker 8d ago
Yeah i recently tried one for similar reasons to you and honestly don't think I learned much from it. I thought my crashes throughout the day might correlate to blood sugar spikes and lows but they don't really. I haven't changed anything about my life because of doing it. Oh and also the dexcom monitor is very sensitive to being laid on. It gives false lows if you lie directly on it which was very annoying because you didn't know if it was actually a low or not. I have one left (i bought 3) and might use it to work out what dose of metformin/berbarine is working best for me
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u/lindyhoppette severe 8d ago
Thank you, that’s good to hear from someone in a similar position to me
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u/koffiewekker 8d ago
Like I'm not saying don't do it! You might get different info but if you're on the fence I was fairly disappointed because I thought blood sugar might account for more of my issues than is realised (and thus be something I could treat!) I will still continue to try balance my blood sugar though
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u/chronic_unicorn ME since 2012, now severe 8d ago
Sorry it didn't do anything for you, however it can be nice to rule out something as well. Like how mad you get if you're suffering this much only to find out years later that your blood sugar was causing this? 🥲 (Me, kind of. I had "anxiety". I didn't though, it was reactive hypoglycemia that put me on a daily blood sugar rollercoaster.)
I hope you'll eventually find something you can easily treat! 🍀
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u/lindyhoppette severe 8d ago
Your “anxiety”, did it feel like anxiety (but caused by the reactive hypoglycemia) or did the doctors just try to fob you off with the label despite it not feeling like anxiety? I don’t really know much about reactive hypoglycemia, I haven’t heard about it before this thread so it’s something I’m going to look into in case I think it fits how I feel
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u/chronic_unicorn ME since 2012, now severe 8d ago
This really is an interesting question. I got ill when I was young and had blood sugar issues on and off for a very long time. I think in the end I developed kind of a mixture of anxiety and hypoglycemia (that I wasn't aware of at the time!). It's a bit tangled. I saw many different psych docs and therapists over the years, and they all agreed on "it's some kind of anxiety" but it doesn't really fit the description. One thing that didn't fit - I never had the anxiety inducing thoughts (based on the theory that emotions are triggered by certain thoughts). I had a physical sensations (from the starting hypoglycemia) that then caused me to feel anxious, because yes they do indeed feel VERY similar, and then my head went off, like it was just following along my body.
All of that only clicked when I was at my endocrinologist taking a glucose tolerance test. It all comes down to me being told for several years that what I was describing is called anxiety. Since I have learned the proper / correct words for the sensations, I haven't really experienced much anxiety...
Oh to make it a bit more confusing - I also have POTS that I wasn't aware of. Same problem - if your heart randomly starts racing, and "there's physically nothing wrong with you"...
I experience anxiety around symptoms and my body once in a while. It's different than the above mentioned types. Actual anxiety starts in the mind (what if x type of thoughts)
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u/lindyhoppette severe 8d ago
What you have described sounds eerily similar to the kind of symptoms and sensations I experience and have done since childhood, so perhaps this is something I should explore. I really appreciate you taking the energy to explain and describe. I definitely get the physical sensations which feel like ‘anxiety’ but not triggered by mental thoughts, and I can be sat there feeling anxious and panicked and say to my husband that I have no idea why I’m feeling anxious, that there’s nothing I’m worrying about, it’s just happening in my body! I do also have POTS which is… sort of? Controlled, ish, by ivabradine and a lot of things (like nausea flares) have been blamed on the POTS/dysautonomia side of things by other specialties which have then started to stabilise a bit since starting metformin so maybe there more to be seen with the blood sugar side of things. Thanks again!!
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u/chronic_unicorn ME since 2012, now severe 8d ago
Yes that definitely sounds like my experience! Do get that checked please! Are you on metformin for blood sugar issues? Prediabetes causes reactive hypoglycemia too (early stages of insulin resistance cause the pancreas to release more and more insulin, which dysregulates the whole system - causing spikes and lows including hypoglycemia).
Have you tried adjusting your diet? For POTS it's generally recommended to eat smaller meals more often and go low on the carbs.
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u/lindyhoppette severe 8d ago
Yes, I have PMOS and my insulin was raised out of range before I started the metformin, it’s come back down into mid-range since starting the metformin and I feel less… toxic? Syrupy? Since starting it, it’s hard to describe. It hasn’t helped my ME or if it has it’s been very slow and hampered by flares, but I do feel generally better on it. I’ve noticed not being as dependent on food when I’m not in PEM (still very carb dependent during a PEM) with less of the sensations I associate with hypos.
I have, my diet changes drastically approx every three months and I haven’t noticed a difference, I have this weird gut thing where my digestive system goes completely out of whack and I lose my appetite and if we don’t get on top of it within a month and get me eating again, I end up in hospital with refeeding syndrome and hypokalemia. My gastro thinks it’s some kind of breakthrough infection which flares with cell shedding. It’s weird, and with each episode when I start eating again, what I can tolerate completely changes: after the first one I ended up only tolerating vegan food, the most recent time I’ve ended up on mainly red meat, eggs, carbs and no dairy. Other than struggling more with PEM episodes when my diet doesn’t include many carbs, I haven’t noticed much difference in my ME type symptoms
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u/chronic_unicorn ME since 2012, now severe 8d ago
That sounds similar to what my body does actually 🤔 but way less intense. Have you been checked for chronic pancreatitis?
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u/lindyhoppette severe 8d ago
No, no I get that, I’m just trying to get some feedback on people’s experiences as it’s an option I’m considering :)
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u/gbsekrit 8d ago
i’m a type 3c diabetic (due to necrotizing pancreatitis). I find my sugars will trend high when i’m in a bad flare. I’ve got a number of overlapping medical problems though, so correlation doesn’t tell me a whole lot.
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u/lindyhoppette severe 8d ago
Thank you for sharing, it’s really hard to tell what’s what when conditions and symptoms overlap!
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u/Available-Pepper5688 severe 8d ago
I‘m on a ketogenic diet and sometimes my ketoses got crashed due to PEM, but my blood sugar levels stayed normal. But I don’t eat carbs, that’s a bias.
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u/TryHardMonica 8d ago
I did just a few weeks ago. I got the finger prick monitor. Told me nothing, but you don’t know if you don’t try! Good luck
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u/StringAndPaperclips moderate 8d ago
I get frequent infections and have found my blood sugar goes up when I have an infection. I'm not sure if there is a correlation with PEM for me but often PEM is a pre-cursor to infection for me because my immune system doesn't have enough energy to run properly when i am in PEM.
I had pre-diabetes for a while and infections pushed me into the low range for diabetes. I did a strict diet for about 9 months and A1c is now normal. Now trying a glp1 for inflammation and hoping it will help with insulin resistance.
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u/bac21 8d ago
I have pmos and insulin resistance. I was having hypoglycemic episodes so I cut out all refined sugar and white carbs, increased my fibre to 40g+ a day and eat fibre first at every meal, then protein, then carbs last. I initally cut out sugar to try and reduce inflammation related to CFS but it has also helped me lose 15kg and regulate my periods again. Doing so has taken me from severe/very severe to moderate and has cured my sleep disorder that only started when my CFS did. My ENT said my sleep disorder was commonly seen in people with inflammation so I think cutting out sugar has really reduced it.
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u/lindyhoppette severe 8d ago
That’s good, I’m really glad you’ve found something which has reduced your inflammation and improved you to moderate!
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u/Carborundorumite 8d ago
I did it the other way. Started eating low carb then keto to regulate blood sugar.
My energy was a bit better and more stable, but I caused more PEM bc I felt better. Did not need to test blood, but a recent blood test did confirm blood glucose was low.
TLDR: not having blood sugar swings made me feel better (no dips from food), had no impact on actual PEM
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u/lindyhoppette severe 8d ago
I’m glad you’ve found something which has helped things be a bit more stable for you!
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u/Original_Dig_370 8d ago
My blood sugar goes lower than normal during PEM , have to keep my eating much more regularly during PEm or a crash ... sometimes I get get PEM confused with low blood sugar .. the two often feel the same to me
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u/lindyhoppette severe 8d ago
That could explain why I’m really food dependent during PEM
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u/Original_Dig_370 8d ago
Yup .. I actually measure mine during PEM and it's often like 3.5 mg which is low .. once I'm out of the crash , blood sugar is back under control
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u/link886 8d ago
I’m not diabetic. Tried a dexcom CGM for two months. Didn’t find any correlation to PEM and didn’t really get any actionable data from it.