Possible ME/CFS - lingering symptoms for years but now sudden unbearable fatigue - What to do?

[Replenished]

Hi @Replenished, I was thinking about your case a little more last night.

1) What could be the connection between a water fast and your issues? Fasting is hard on the adrenals. What if it set off an adrenal fatigue type situation? If it's not outright Addison's or Cushing's a regular doctor won't be able to find it. Check out this page from Stop The Thyroid Madness on adrenals and aldosterone, which sounds similar to your symptoms: https://stopthethyroidmadness.com/aldosterone/

2) Someone had mentioned Dr. Nigel Speight, an ME specialist. It could be good to go see him or someone similar to try and rule ME/CFS in or out. He should be versed in other diseases which are similar or misdiagnosed as ME/CFS. So he could be helpful either way.

3) This is a list of differential diagnoses from the International Consensus Criteria Physicians Primer:
http://www.investinme.org/Documents/Guidelines/Myalgic Encephalomyelitis International Consensus Primer -2012-11-26.pdf



If you have all this stuff ruled out, it probably is time to see an ME specialist.

I do wonder if there could be something going on with the adrenals but when tested they are typically high end of normal rather than low. My DHEA which is a less thought of adrenal hormone is always very high, out of range high. My morning Cortisol is typically high end of normal. My aldosterone when tested twice was normal. I even tried Fludrocortisone briefly under the suspicion my aldosterone might be low but didn't notice any benefit. I genuinely feel utterly depleted and deficient in something but still am yet to find what it is.

I'm looking for how to contact Dr Nigel Speight only based on your post. I can see various sites that mention him but can't see how to contact him if you or anyone else knows how to contact him or a similar doctor that may be able to help please let me know.

 

[Replenished]

Symptoms are certainly back to what feels like extreme depletion/deficiency more so than general fatigue. I feel so depleted like what I'd imagine it would feel like to have done hours of exercise having had no food or drink or replenishment. Yet I'm not craving anything in terms of calories, sugar, salt etc.

Again this can sometimes come on very extreme quite suddenly and I can't work out why. Let's say for example 75% of the time I feel generally depleted, weak, fatigues, dry, thirsty and quite crappy. Then over the period of minutes this can turn into feeling extremely weak and depleted, on the very of feeling shaky, can't think clearly, feels like it's a struggle for my body to keep going/for my heart to beat. This makes up about the other 25% of the time and can last for hours or sometimes a day or two before getting back to the slightly less severe level of depletion.

Yesterday, last night, through the night and this morning have been sickening, scary. I feel trapped with no idea what to do and I'm losing hope. Racking my mind for something that might make me feel a bit better but struggling to come up with any idea after all I've tried. Just drinking and having small bits of food to keep me going.

 

[SWAlexander]

Replenished "Or should I be pushing myself to get up and do something during the day if possible? "
I'm not sure that would be helpful. I tried for one month, because I was told my cortisol level will normalize if I get of prednisone and try to be more active. The blood test revealed something new to me - low cortisol, low ACTH and high aldosterone levels can cause high blood pressure and low potassium levels and Symptoms like:

• Extreme fatigue.
• Low blood pressure, even fainting.
• Salt craving.
• Low blood sugar (hypoglycemia)
• Nausea, diarrhea or vomiting (gastrointestinal symptoms)
• Abdominal pain.

Today I start with 5mg prednisone again hoping my energy level will pick up.

 

[Replenished]

Does anyone think a Methylation protocol would be worth a try? Seeing as I generally feel awfully depleted.

I've tried a tone of supplements but not specifically a 'methylation protocol' aimed at this condition. My problem with supplements is typically I read some theory and think oh that might help, then try the supplement for a couple of weeks, feel absolutely no improvement then give up and stop taking them.

Is there a basic methylation protocol someone can recommend that people have had success with here?

 

[Replenished]

Does this make any sense to anybody. It's as though I need a constant stream of nutrition/calories. If I eat consistently, say every hour, symptoms are somewhat reduced. It's more noticeable with calorie dense, foods, such as cheese, meat.

I had been feeling extremely bad the past 2 days, very depleted, like I'd run a marathon and couldn't recover. I ate healthy/normal through the day yesterday, breakfast, lunch, still felt depleted. Decided to get a two pizzas, relatively healthy ones, but how health can a pizza be....anyway an hour or so after having eaten the pizza I felt quite a bit better, went to sleep had a very deep sleep and woke up again feeling a bit better. Started the day, eating normally/health again, by afternoon I was starting to feel depleted again, decided to have two cheese and ham sandwiches (based on the twisted cheese/pizza logic) half an hour after eating the sandwiches, again I'm feeling quite a bit better.

What's going on? Obviously I can't eat non stop and constantly eat fatty foods, but it appears as though this helps my body. I tried keto a couple of months ago and felt like I was overall slightly less fatigued but any physical exertion was near impossible and my muscles would instantly feel depleted as though there was no glycogen/glucose to provide energy.

 

[Pyrrhus]

Is there a basic methylation protocol someone can recommend that people have had success with here?

From this discussion:
https://forums.phoenixrising.me/thr...the-methylation-cycle-trap-or-blockage.83459/

I'm sure if you look around Phoenix Rising, you will find a couple of different methylation protocols, some of which come with simplified versions.

From a theoretical perspective, though, in order to break a methylfolate trap you would really only need a few basic things:

1. Vitamin B12: This breaks the methylfolate trap.
2. Folate (Vitamin B9): Once the methylfolate trap is broken, there will be an increased demand for folate.
3. Vitamin B6: This will reduce any homocysteine that accumulated during the methylfolate trap.
4. Potassium: Once the methylfolate trap is broken, there may be a sudden, but temporary, drop in potassium. Unexplained muscle cramps are a good sign of this phenomenon.

Hope this helps.

 

[caledonia]

Methylation protocols can be tricky. There are several ways to make yourself much worse, like going to the ER worse. I have some documents in my signature link I wrote that goes through all that.

I'm another one that needs to eat some starchy carbs to feel ok. I would probably eat more fat too, but my gallbladder can't take it. At any rate, it sounds like you might have some hypoglycemia going on.

I eat four meals a day, with a couple of snacks in between. I keep them balanced with some protein, vegetables, and starchy carbs (sweet potato, corn tortilla, rice, etc), and whatever fat is in them naturally without adding more fat.

Hmmm, it looks like Nigel Speight is semi-retired: https://me-pedia.org/wiki/Nigel_Speight

He gave a talk at the ME Association in 2020, so I bet they would know how to contact him. Or refer you to someone similar if necessary.
https://meassociation.org.uk/product/severe-me-children-nigel-speight/

 

[Replenished]

Methylation protocols can be tricky. There are several ways to make yourself much worse, like going to the ER worse. I have some documents in my signature link I wrote that goes through all that.

I'm another one that needs to eat some starchy carbs to feel ok. I would probably eat more fat too, but my gallbladder can't take it. At any rate, it sounds like you might have some hypoglycemia going on.

I eat four meals a day, with a couple of snacks in between. I keep them balanced with some protein, vegetables, and starchy carbs (sweet potato, corn tortilla, rice, etc), and whatever fat is in them naturally without adding more fat.

Hmmm, it looks like Nigel Speight is semi-retired: https://me-pedia.org/wiki/Nigel_Speight

He gave a talk at the ME Association in 2020, so I bet they would know how to contact him. Or refer you to someone similar if necessary.
https://meassociation.org.uk/product/severe-me-children-nigel-speight/

Thanks. Yes possibly something going on with blood sugar, I agree. Also the symptoms started after a long fast.

If I eat regularly symptoms are less severe but at the same time, I can also go eating nothing all day and I don't notice any low blood sugar type feelings. When I feel depleted it feels more like an electrolyte/mineral or vitamin issue, rather than blood sugar, that's just my impression.

I was looking at this test re Methylation. Unsure if it's worthwhile/if people use it her with any success?

https://smartnutrition.co.uk/wp-con...Smart-Nutrition-Methylation-sample-Report.pdf

 

[Replenished]

One thing to add, my stools have always seemed to float since the start of my health problems. I don't think they floated prior to that.
I can't say I have any major digestive issues but I wonder if the floating stools might point towards something? They are also light clay coloured?

Could I have some issue absorbing fats? I've been debating getting a fatty acids profile blood test.

Eating regularly yesterday, I didn't feel too bad. I mean still rough but not extremely depleted. Went to sleep and woke up this morning again feeling Utterly depleted, weak, breathing even felt laboured for a period.

 

[Woof!]

When I feel utterly depleted (especially when combined with weak, shaky legs), I take Ca++ citrate and Mg++ three times a day, and this helps tremendously. I have an appointment pending with a calcium absorption specialist to learn more.

 

[Replenished]

When I feel utterly depleted (especially when combined with weak, shaky legs), I take Ca++ citrate and Mg++ three times a day, and this helps tremendously. I have an appointment pending with a calcium absorption specialist to learn more.

Interesting. Calcium absorption specialist!? Never heard of such a thing. Do keep us posted on what happens.

 

[Replenished]

My stools float, are pale and I feel better after eating fat, albeit briefly. So I was thinking maybe I have a fat absorption / bile issue. Yet my Stool tests seems to suggest I have no such issue. How accurate are these tests because what I see in my stool every day differs to what the results suggest. Result report attached.

 

[Pyrrhus]

I can't say I have any major digestive issues but I wonder if the floating stools might point towards something? They are also light clay coloured?

So I was thinking maybe I have a fat absorption / bile issue.

Problems with the vagus nerve, low-level pancreatitis, or exocrine pancreatic insufficiency might cause clay-colored floating stools.

The stools float because they contain undigested fat, which floats on water.
(Normally, the vagus nerve tells the pancreas to release pancreatic enzymes, which digest the fat.)

The stools are clay-colored because they don't contain enough dark-brown bile.
(Normally, the vagus nerve tells the gallbladder to release bile through the pancreas. This release of bile might be obstructed by pancreatitis.)

I sometimes get such stools during PEM, but not normally.

Unfortunately, there is no reliable test for low-level pancreatitis, and most cases go undiagnosed.

But there is a great discussion thread on exocrine pancreatic insufficiency (EPI), which is easily tested for and easily treated:

Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)
https://forums.phoenixrising.me/thr...y-epi-and-chronic-fatigue-syndrome-cfs.62997/

 

[lenora]

HI @ Replenished.....You could also have a gluten problem. Has that ever been checked out? Yours, Lenora.

 

[Replenished]

Problems with the vagus nerve, low-level pancreatitis, or exocrine pancreatic insufficiency might cause clay-colored floating stools.

The stools float because they contain undigested fat, which floats on water.
(Normally, the vagus nerve tells the pancreas to release pancreatic enzymes, which digest the fat.)

The stools are clay-colored because they don't contain enough dark-brown bile.
(Normally, the vagus nerve tells the gallbladder to release bile through the pancreas. This release of bile might be obstructed by pancreatitis.)

I sometimes get such stools during PEM, but not normally.

Unfortunately, there is no reliable test for low-level pancreatitis, and most cases go undiagnosed.

But there is a great discussion thread on exocrine pancreatic insufficiency (EPI), which is easily tested for and easily treated:

Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)
https://forums.phoenixrising.me/thr...y-epi-and-chronic-fatigue-syndrome-cfs.62997/

Thanks. EPI actually sounds plausible in terms of how my stools present and also how deficient of nutrition I feel. But my stool test above showed normal levels of Pancreatic Elastase, so I would assume that suggests I don't have it. Unless those stools were different or the test is inaccurate.

 

[caledonia]

One thing to add, my stools have always seemed to float since the start of my health problems. I don't think they floated prior to that.
I can't say I have any major digestive issues but I wonder if the floating stools might point towards something? They are also light clay coloured?

Could I have some issue absorbing fats? I've been debating getting a fatty acids profile blood test.

Eating regularly yesterday, I didn't feel too bad. I mean still rough but not extremely depleted. Went to sleep and woke up this morning again feeling Utterly depleted, weak, breathing even felt laboured for a period.

I also have stools like that. This suggests you have an issue digesting fats, which could be a bile/gall bladder/liver type issue.

Do you have other symptoms like pain or burning in your upper right abdomen under the rib cage, or pain in your right back/shoulder blade/neck areas? Any nausea after eating fats?

This can be managed by eating a lower fat diet and taking support supplements like milk thistle (this will darken the stools back to brown), and bile support like phosphatidylcholine. There are more supplements I take but those are my best two.

I have been officially diagnosed with biliary dyskinesia (very low flowing bile).

With the poor sleep, have you had a sleep study to check for sleep apnea and/or periodic limb movement (legs and feet twitching and jerking while asleep)? You can have these and be micro-awakened many times a night and not realize it. You'll feel like crap in the morning. I have both of these too.

 

[Replenished]

HI @ Replenished.....You could also have a gluten problem. Has that ever been checked out? Yours, Lenora.

Hi Lenora, you are on the ball. I do have a gluten problem but that was something I worked out quite a few years back before this period of health issues started. So I don't eat gluten anymore.

One thing i've noticed more recently, and I don't know if it makes any sense but if I eat white potato, shortly afterwards I feel really unwell, bloated, foggy headed, extreme anxiety, cannot think straight. I seem ok with other startches, rice, sweet potato etc but white potato i'm realising is a problem.

 

[lenora]

Yes @Replenished......That's the thing with allergies, they tend to change from time to time, so do bear that in mind. You're fortunate that you're able to eat white products. All a bit of a nuisance. Yours, Leno.

 

[Replenished]

I've ordered the Metabolomix+ test from Genova with the fatty acids add on. I'm a little concerned though, it says limit fluid intake to 2 litres for the 24 hours before the test. I'm assuming this is so the urine isn't too diluted for the test, as most of it is via urine sample. Problem is, due to my frequent urination/poor ability to concentrate urine, my urine is always clear/dilute. Could this impact the test results?

I have no idea how they can get accurate test results such as vitamins etc from a urine sample that could either be very watery or extremely concentrated?

 

[Replenished]

Metabolomix+ test result:

My urine is dilute/clear, yet this test states my urine creatine level was verging on high. My blood creatinine was also high and just out of range from a separate blood test on the same morning. I don't know if that tells us anything other than I'm obviously dehydrated, which is exactly how I feel. Also not sure if that information helps interpret the results more specifically.

If anyone has any thoughts, please share. The only part of this test carried out with blood, rather than urine, is the blood fats/omegas part, which is clearly off/out of range.