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

[Booble]

A water fast?

 

[Crux]

I agree very much that rest and low stress is the first in line of treatment.

When you are ready to answer more inquiries, here's one for you.

I see in your hair mineral analysis that iron is high, and some of the ratios may indicate that iron may be high.

Have you had a blood serum iron panel ? High iron can interfere with testosterone production.

 

[Replenished]

A water fast?

Yes. Days with only water and no food. It was a mistake in hindsight but at the time it was more for strange headaches and brain fog I was getting. As a detox per say. This health symptoms developed a short while after the water fast. A few days after ending it in fact. That was abut 5 years ago.

 

[Replenished]

I agree very much that rest and low stress is the first in line of treatment.

When you are ready to answer more inquiries, here's one for you.

I see in your hair mineral analysis that iron is high, and some of the ratios may indicate that iron may be high.

Have you had a blood serum iron panel ? High iron can interfere with testosterone production.

Depends what you mean by iron panel. I've had iron and ferritin tested 10s of times over the past few years and it's always in normal range. One of the recent results:

Iron 20.5 5.8 - 34.5 umol/L
Ferritin 215.0 30 - 400 ug/L
Transferrin Saturation 32.5 20 - 50 %
TIBC 63.0 45 - 81 umol/L

 

[Crux]

That's an iron panel, Looks great except ferritin is high, That of course could be from a number of things.
The body is sequestering iron because of some inflammatory or infectious condition. Some docs would argue that the ferritin is perfectly fine, but many researchers would disagree.

I don't know much at all about hair mineral analysis.. not sure why it doesn't correlate to blood serum.
The research papers aren't always right.

Sometimes though , tissues and organs can have a different set of mineral accumulations than the blood indicates.

We'll just keep our hopes up.

 

[Shanti1]

My main symptom for the past 5 years has been dehydration, frequent urination, dry mouth, which was thought to be Diabetes Insipidus and tests showed I may have a mild/partial form of this condition, yet the replacement hormone didn't help and it didn't quite stack up that this was the condition causing my symptoms. Now 5 years on since the specific dehydration symptoms began, over the past year and specifically the past few months and weeks, the extreme fatigue has really hit me.

It seems to me that this is somehow key to your situation. What is your blood pressure like? Have you checked into nephrogenic diabetes insipidus? This is where the kidney loses sensitivity to the ADH as opposed to the pituitary not producing it. Another member here suggested trying IV fluids. If you google it, there is some interesting research with IV saline and IV albumin and ME/CFS, presumably, they increase blood volume which helps with blood/oxygen perfusion to the tissues. I personally have very low BP and ADH with high osmolality and have responded very well to desmopressin. If desmopressin didn't work for you maybe midodrine, fludrocortisone, or pyridostigmine could be considerations.

 

[Mary]

@Replenished - first, I agree with everyone else - rest as much as you can and don't push yourself. I think it's quite possible if I had known that this was what to do (or rather not do) when I first started crashing, I might have been able beat it back (or not).

One thing you wrote caught my eye - difficulty swallowing. This can be a symptom of low phosphate or phosphorous. When phosphorous is low, it affects the small muscles first, like in the throat and the eyes. When my phosphorous was low, I was seeing double at night and also had trouble swallowing my pills. When it was even lower, it caused extreme fatigue for me. I have a sister who does NOT have ME/CFS but commented to me a few months ago that she had trouble swallowing her pills. And of course doctors found nothing wrong. She started supplementing with my phosphorous supplement and within a few days, she found it much easier to swallow her pills.

So all this led me to googling "hyposphophatemia" and "thirst" (your symptom) which led me to this study:

Fanconi syndrome requires that distal segments of the nephron do not absorb the solutes that are reabsorbed primarily by the proximal convoluted tubule. Malabsorption of these substances could be due to altered permeability of tubule membranes or problems with transport carriers. The substances they do not absorb, include amino acids, bicarbonate, glucose, phosphate, proteins, and uric acid and are considered to be associated with low ATP levels.

The loss of water and electrolytes observed in this condition would cause thirst, fatigue, weakness, and polyuria. Hypophosphatemia causes a variety of signs and symptoms, especially if the serum phosphorus level gets below 1 mg/dL. Neuromuscular symptoms such as paresthesia, tremor, and muscle weakness may be noted. Severe hypophosphatemia may impair myocardial contractility though this rarely results in clinical congestive heart failure.

Fanconi Syndrome - StatPearls - NCBI Bookshelf (nih.gov)

You mention you feel not so much tired but rather depleted. I believe that ME/CFS does cause depletion of nutrients. I don't know how or why it does this, but I take a boatload of stuff which I've experimented with over the years, and several things have improved my functioning and how well I feel. But I have to keep taking them - the deficiency doesn't go away AND the exercise intolerance or PEM continues. some of the things which have helped me the most are branched chain amino acids, B1, phosphorous, B6, folate, B12, potassium.

I don't have your thirst or dehydration issues.

Anyways, Fanconi Syndrome might be something to look into. It seems to tick a lot of the boxes of your symptoms.

AND though testing has shown your electrolytes to be normal, this may not be the case. e.g., Persons with ME/CFS can have low intracellular potassium despite normal blood work. (see Why is potassium supplementation needed in methylation treatmt? | Phoenix Rising ME/CFS Forums ) I think it's reasonable to wonder if something similar might be at play with other electrolytes, including phosphorous, such that blood work alone doesn't tell the true story.

 

[Mary]

no amount of electrolytes or supplementation have helped.

Electrolytes is a broad term - did you try phosphorous specifically? And how much in the way of each individual electrolyte did you take? e.g., I have to take 1000 mg of potassium (in divided doses) a day to keep my levels up. They tank without it. I have to take phosphorous several times weekly - actually it used to be 2 - 3 times a week and now I need it almost daily.

Your basic gatorade only has sodium and a very low amount of potassium (45 mg, which is 1/100 of the RDA we need).

 

[hapl808]

I have to take phosphorous several times weekly - actually it used to be 2 - 3 times a week and now I need it almost daily.

Would it be possible to just eat higher phosphorus foods or drinks, or does it not absorb well enough?

 

[Replenished]

Electrolytes is a broad term - did you try phosphorous specifically? And how much in the way of each individual electrolyte did you take? e.g., I have to take 1000 mg of potassium (in divided doses) a day to keep my levels up. They tank without it. I have to take phosphorous several times weekly - actually it used to be 2 - 3 times a week and now I need it almost daily.

Your basic gatorade only has sodium and a very low amount of potassium (45 mg, which is 1/100 of the RDA we need).

I've tried various different electrolyte powders and various doses of Potassium, Sodium, Magnesium put together myself but not phosphorous from what I recall. I'm at a point now where I have no idea what to do. I've tried so many different supplements, minerals, electrolytes at different doses, all of which appear to me to have done nothing to improve my symptoms.

If you have any basic guidelines on what you think would be an appropriate phosphorous + electrolytes dosage I could give it a go but I've kind of given up on that pathway.

 

[Replenished]

It seems to me that this is somehow key to your situation. What is your blood pressure like? Have you checked into nephrogenic diabetes insipidus? This is where the kidney loses sensitivity to the ADH as opposed to the pituitary not producing it. Another member here suggested trying IV fluids. If you google it, there is some interesting research with IV saline and IV albumin and ME/CFS, presumably, they increase blood volume which helps with blood/oxygen perfusion to the tissues. I personally have very low BP and ADH with high osmolality and have responded very well to desmopressin. If desmopressin didn't work for you maybe midodrine, fludrocortisone, or pyridostigmine could be considerations.

My BP is somewhat low. Around 100/60 on average. But then it has been my whole life even when I was completely healthy. Nephrogenic DI was a suspicion as well but testing seems to indicate it isn't that, nor is it central DI. I tried Desmopressin for about 2 years but found it didn't help. It did help me retain fluids to a degree but I still felt dry and depleted constantly. Tried Fludrocortisone, no improvement there either in terms of the hydration. It maybe give a little boost but I felt a little wired on it. More negative than positive,

I do think I have a mild form of POTS so your observations are probably correct in regards to possible low blood volume etc.

 

[Mary]

Would it be possible to just eat higher phosphorus foods. or drinks, or does it not absorb well enough?

I have to take high doses of several supplements daily. It would be impossible to get everything I need in food. I believe that ME/CFS causes nutritional deficiencies, interfering possibly with both absorption and metabolism. I never had to take all thsi pre-ME/CFS. e.g., I have to take a high dose of methylfolate [that should have read methylcobalamin] daily, my blood levels are high but my cobalamin levels are pretty much undetectable on hair analysis.

My blood levels of potassium are normal (albeit on the low side of normal) but if I don't take my potassium supplement daily, I develop muscle cramps and twinges in my feet and calves pretty quickly.

I think it would be difficult to get the phosphorous I need from food. I have to take high doses of B1 and B6 and folate and BCAAs, to name a few. And I can't get all of this from food, or if I tried to, it would take an enormous of work and calculations and food prep which I just can't do.

I'm looking forward to the day I recover when I won't need to take all these pills! (because I never needed them before I became ill)

 

[Crux]

When my phosphorous was low, I was seeing double at night and also had trouble swallowing my pills. When it was even lower, it caused extreme fatigue for me.

Please ease my mind and forgive my ot, but have you tested PTH, if elevated it may lower phosphorus.

 

[Replenished]

Electrolytes is a broad term - did you try phosphorous specifically? And how much in the way of each individual electrolyte did you take? e.g., I have to take 1000 mg of potassium (in divided doses) a day to keep my levels up. They tank without it. I have to take phosphorous several times weekly - actually it used to be 2 - 3 times a week and now I need it almost daily.

Your basic gatorade only has sodium and a very low amount of potassium (45 mg, which is 1/100 of the RDA we need).

Also, if this makes any sense whatsoever. If I eat watermelon, which you would assume would hydrate and increase potassium; I actually find I start getting cramps. So for some reason, watermelon or similar, knocks my electrolytes out of balance or washes me out in some way. It's very prominent. If I eat half a water melon, I'll develop cramps in feet etc pretty quickly.

 

[Shanti1]

I tried Desmopressin for about 2 years but found it didn't help.

Wow, that is a long time with no results. I literally felt better within 5 min of taking it and have continued benefit. My body was obviously desperate for some ADH.

 

[Mary]

If you have any basic guidelines on what you think would be an appropriate phosphorous + electrolytes dosage I could give it a go but I've kind of given up on that pathway.

I can't give you an appropriate dose for various electrolytes. We're all different. There are people who take a lot more potassium than I do, because they need it.

You may or may not need phosphorous - again, it came to mind because of your difficulty swallowing.

ETA: I'm finishing this post below, it got submitted too quickly!

 

[Mary]

@Replenished - sorry, I didn't finish the above post - my computer has a mind of its own! What I was going to say was that I discovered my problem with low phosphorous when I started taking thiamine several years ago. The thiamine markedly boosted my energy almost immediately - I think within one day. It was fabulous. And then a day or 2 later I got hit with severe fatigue. It was very familiar because a similar thing happened when I started taking methylfolate - really nice energy boost followed by bad fatigue, but that time it was my potassium taking.

Potassium didn't help the fatigue from the thiamine, and then I guessed my phosphorous had tanked due to refeeding syndrome. Hypophosphatemia is the hallmark of refeeding syndrome. I looked up high phosphorous foods, found that dairy is one of them, I had some kefir on hand so I drank several glasses of it and within a few hours the horrible fatigue started to go away. I can't drink that much dairy every day and ended up getting a monosodium phosphate supplement. I talked to my doctor about it (I had a good doctor then) and he okayed it. Anyways, it's since become difficult to find a good phosphate supplement but this is working for me now - I'm taking about one a day now (skip one every once in awhile). Swanson Vitamins used to carry a monosodium phosphate supplement but they've stopped. Anyways, this is working for me. My sister who was also low needed 2 to 3 a day for several days, and I think she's still taking it, though I don't know how much.

Almost everything I've done or take is due to self-experimenting - I read about things, I do educate myself, and then start slowly to see what happens. I've also learned it's important to only try one new thing at a time so that I'll know what is doing what to me.

I know you're fed up with trying things but I don't know any other way to make progress. Lab tests can be useful but most of our issues don't seem to show up on lab work, or it's difficult to find the right test to take, or a doctor who's willing to work with you.

 

[Mary]

If I eat half a water melon, I'll develop cramps in feet etc pretty quickly.

yes, that seems a bit strange to me! I just read that watermelon is high in potassium, so maybe it's too much potassium in relation to magnesium? I'm just guessing. Have you had an RBC magnesium test? This measures magnesium that's inside the cells as opposed to serum.

 

[Mary]

Please ease my mind and forgive my ot, but have you tested PTH, if elevated it may lower phosphorus.

No, I haven't been tested - I'll look into this - thanks! Though I think my phosphorous issues stem from refeeding syndrome related to thiamine - that's when I first had symptoms of low phosphorous. See this post above.

 

[Replenished]

I've had other tests outside of this but this is the most comprehensive blood test I've had in the past year.