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

[Replenished]

Hi all,

I've posted one or two threads on this forum previously about individual symptoms I've been struggling with as through my search for answers I always ended up on this site. I was under the suspicion I may have CFS but never really wanted to accept it as a possibility and had always hoped to find some sort of hormonal / blood / deficiency type issue that could be resolved. So far that hasn't happened.

Unfortunately the fatigue I'm now experiencing, at times has become extreme and scary and I'm somewhat convinced I have CFS or something very similar.

I've had fatigue for years but not anywhere near this level. I could still do some exercise here and there and live a somewhat limited yet relatively normal life. 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.

I've been trying to still get out once a day for a walk or to shop for food but on recent attempts I've felt like I'm on the verge of collapse. I stopped midway through shopping yesterday and got out of the shop back to the car and felt as though I could barely move my limbs or keep my system going. I had to just sit in the car for about an hour before I even felt I had the energy or courage to make it out of the car to walk the short steps to my front door. It's quite frightening and anxiety provoking feeling so weak after being fit and active for most of life.

I manage to get a decent amount of hours sleep thankfully but wake up still feeling completely drained and weak. If I stay resting in bed for a few hours I may have a bit of energy to get up and do something small in the late afternoon/early evening, before returning to bed.

The reason for my post is, things seem to have escalated recently in terms of the fatigue and where possible I want to do what's best to stop things getting even worse and obviously long term work towards getting better.

Should I just rest as much as possible right now? Would that be best? Or should I be pushing myself to get up and do something during the day if possible?

On the odd day here and there I do feel able to go for a walk. But even if I feel ok for a few hours, out of nowhere this extreme depleted type fatigue can just hit me where just laying in bed even feels like the body is struggling.

Like most others here I've had almost every medical test you can imagine and have found no answers. I'm due to see Rheumatology re possible autoimmune issues in January although I don't suspect this will throw up anything, and I think this will probably be the last NHS avenue I'm sent down before they look at diagnosing CFS.

Sorry for such a long post. I'm just looking for wisdom from you guys as to what's best to do short term in such an escalation of symptom's/worsening of the condition.

P.S I'm male, 33, of normal/healthy weight.

 

[hapl808]

Should I just rest as much as possible right now? Would that be best? Or should I be pushing myself to get up and do something during the day if possible?

Others may have better specific symptom advice, but offhand I'd say yes, you should rest as much as possible. Sounds like a drop from mild to moderate and the worst things I did was when I convinced myself (with doctors help usually) that I could just push through. If it's a CFS-like illness, you can't push through and you'll likely make yourself worse. I was stubborn and didn't want to hear that.

Over the years when I was mild, I had a few drops into moderate (in my 30's) that I eventually recovered from. Until I pushed myself a bit too hard and then didn't recover (in my 40's).

 

[lenora]

Hello @Replenished......You know your body (& mind). If you aren't responding within your "normal" then it's time to try something else before it's too late. I agree with @hapl808, don't push yourself. It's break time in most businesses, so take this opportunity to rest up, have food delivered to you, even ready made meals and really just take a vacation, but take it at home.

I may be wrong, but it seems that men tend to "exercise" by using weights far more than women do. That always seemed like a bad idea to me....that's really pushing the body to unreasonable ideals. Perhaps you aren't doing that in the least.....but I do know exactly what you're talking about insofar as shopping goes and just barely making to your car. It takes discipline to walk away when you're still OK, you have the check-out line to face and b/c you're a young man you probably feel that you have to live up to a certain image. Well, just forget all of that....you're a sick individual. Something in your system is broken somewhere, perhaps the rheumatologist can shed some light on things. It takes finding the right doctor to make a diagnosis....as you know, they're pretty scarce. At least find someone you can confide in, that you feel a warmth with....even though they may not have the answers at least you'll feel that someone cares, listens and is trying to do the very best they can for you.

I've been told by my doctors (I'm older and have had this for over 35 yrs.) that doctors don't even communicate with each other any longer b/c of COVID....no time. Thus you have to carry your own records & you can do it. Just pick up CD's of all test results (hopefully they've been at the same place), reports, have doctor's letters e-mailed to you (in the U.S. we have the Patient Portal & you can access all lab tests via it, in other countries there is probably something rather similar). I didn't like it at first, but it does make it easy to get all results and get them fast.

Have your new doctor(s) read the CD's of the MRI's (for example) themselves. Don't give them the radiology report as you want fresh eyes to look at it. I have found doctors who are from or have worked in Third World Countries as volunteers to be invaluable in my cases. Diagnoses that never would have been made were found by these men and even the second neurosurgeon that I used understood a little known disease in the U.S. because he was from S. Africa. So utilize each set of eyes as much as possible.

You know, in the early days this was also called 'The Raggedy Ann Syndrome', rather apt when you consider that's how many of us feel. Like things don't want to work, that we're floppy and reclined is our best position. This is normal and not optimal. I think ruling things our yourself is the best way to go at this point. Get the things you need, even if little by little, stay inside, watch a lot of TV, listen to music, read (if you can) do anything to relax and don't let the "lazy" tape play over and over in your mind.

It's a tough illness and your best chance is now before it gets really bad. You may cycle in and out of stages, I know I have and plenty of others have also. My exercise level is not good at all these days, but we don't share the same problems and I'm glad that we don't. I'm old; you're young and should do everything possible to retain as much of your health as you can. When you feel like it, start exercising by walking, don't just jump into the deep end. Wishing you all the best....and better health. Yours, Lenora.

 

[Crux]

If you can describe any more symptoms, that would help. With dehydration, dry mouth, urination, is there thirst ? These symptoms can be from hyperparathyroidism, but most often there will be elevated calcium in a serum blood test.(CMP) comprehensive metabolic panel

https://en.wikipedia.org/wiki/Hyperparathyroidism

Genova Diagnostics offers a series of tests. I've never used them, but @Learner1 recommends them.
Perhaps she will offer a word here.

https://www.gdx.net/

 

[Replenished]

Others may have better specific symptom advice, but offhand I'd say yes, you should rest as much as possible. Sounds like a drop from mild to moderate and the worst things I did was when I convinced myself (with doctors help usually) that I could just push through. If it's a CFS-like illness, you can't push through and you'll likely make yourself worse. I was stubborn and didn't want to hear that.

Over the years when I was mild, I had a few drops into moderate (in my 30's) that I eventually recovered from. Until I pushed myself a bit too hard and then didn't recover (in my 40's).

Thank you. I'll try and take it easy.

Are you now stuck at 'moderate'?

 

[Replenished]

If you can describe any more symptoms, that would help. With dehydration, dry mouth, urination, is there thirst ? These symptoms can be from hyperparathyroidism, but most often there will be elevated calcium in a serum blood test.(CMP) comprehensive metabolic panel

https://en.wikipedia.org/wiki/Hyperparathyroidism

Genova Diagnostics offers a series of tests. I've never used them, but @Learner1 recommends them.
Perhaps she will offer a word here.

https://www.gdx.net/

Thanks. I've had my Parathyroid tested, it come's back normal.

My main symptoms are really those mentioned; Dehydration, dry mouth, urination and yes there is thirst. Fatigue being the other main symptom. I get brain fog, my brain just doesn't work anywhere near the way it used to but I've somewhat resigned myself to this. When it first started it was a nightmare and I was very concerned about my cognition but it's become my new normal now unfortunately. So yes, my cognition, focus, memory, are all very poor. I've noticed recently I keep sensing this strong sort of oniony smell/taste, can't work out what it is but it's there every day. My outer eyebrows are thinning. I know this is often a sign of hypothyroidism but I don't have this either by blood tests, although I have experimented with various thyroid medications on the off chance they might help. They haven't. I feel depleted all the time, as if I'm deficient in something or like my electrolytes are off, but again no evidence of this can be found and no amount of electrolytes or supplementation have helped.

One separate issue which seems more of a mechanical/cartilage type issue is I have difficulty swallowing due to some sort of catching/limited movement of the cartilages in the throat. When swallowing, the upward movement of the cartilage appears to not be able to move up freely as it did previous. I can still get food/drink down ok but it's very odd and frustrating. This started a year or so before all of the other symptoms. ENT have been unable to work out exactly what's going on or how to resolve it. Probably unrelated to all of the CFS type stuff but who knows.

I've actually had a few tests from Genova. I've not gained anything useful from them frustratingly.

 

[Woof!]

@Replenished - I wholeheartedly agree with everyone above who urged you to take yourself out of your regular routine and do nothing more than seriously rest, and be ready to do that for a long time (no, not just a few days or a week or two) as you work through your differential diagnosis with knowledgeable people. There really is no other substitute for sustained rest when you describe your symptoms the way you have, as annoying and boring as sustained rest might be.

Like so many here, I initially tried (and still do at times, since my personality HATES not being productive) to push through things until I went all "Raggedy Ann." At that point it took me several years to fight my way back from 'severe/couch-bound' to 'moderate' (where I've been for several decades). Nowadays, on my 'good' days it is sooooo easy to feel like the bad days are all behind me (so I do too much), but the seriousness of the bad days (which include pretty awful brain fog) are always there as a reminder.

I'm praying things fall into place so you can get the sustained rest you need.

 

[Booble]

REST REST REST.

If you mega rest and drink lots of water that your body is clearly asking for you might find in a few months you'll clear yourself of whatever is lurking.

Try to remain optimistic. I think your body can still get itself regulated. The anxiety and over-focusing on it (trust me, we all do this) exacerbates. See if you can give yourself 2-3 months of really good rest without trying to figure out exactly what it is. Let all that go.

 

[Replenished]

REST REST REST.

If you mega rest and drink lots of water that your body is clearly asking for you might find in a few months you'll clear yourself of whatever is lurking.

Try to remain optimistic. I think your body can still get itself regulated. The anxiety and over-focusing on it (trust me, we all do this) exacerbates. See if you can give yourself 2-3 months of really good rest without trying to figure out exactly what it is. Let all that go.

The dryness, dehydration has been there for about 5 years now so if my body is still asking for water/fluid it's been going on a long while. If I drink a lot I actually feel super washed out, I can't retain anything.

Thank you though. I definitely need to stop analysing it which is just making me anxious and going to make the whole situation. Crazy how if you believe you have CFS the fatigue that i'd usually just accept and expect to pass in a couple of days, somehow now feels like it won't shift.

I slept about 9 hours last night, woke up, and was again hit by the fatigue and thought to myself "oh dear, this really isn't good". I just laid in bed, fell back asleep for another 2 hours. Was still fatigued upon waking but as the day has gone on my energy has lifted a little.

It's really hard to know for one if this is CFS and for two whether to rest completely or not. I'm certainly taking it easy on the advice given here and for the past few days have been forced to. But at the same time, it feels as though if I get going a bit and do something light my energy can lift somewhat. My home is a tip, due tothe fatigue, and I live alone so really needed to tidy as I have some workmen coming in. Managed to do much of the tidying and as I say, I was still fatigued but less so than when lying in bed. So again is it CFS? It's very confusing. I supposed I wait to see if theres any PEM, but again there seems no pattern to that. I can feel not too bad for half the day then bang out of nowhere I can barely do anything but lay in bed.

 

[Booble]

The dryness, dehydration has been there for about 5 years now so if my body is still asking for water/fluid it's been going on a long while. If I drink a lot I actually feel super washed out, I can't retain anything.

Thank you though. I definitely need to stop analysing it which is just making me anxious and going to make the whole situation. Crazy how if you believe you have CFS the fatigue that i'd usually just accept and expect to pass in a couple of days, somehow now feels like it won't shift.

I slept about 9 hours last night, woke up, and was again hit by the fatigue and thought to myself "oh dear, this really isn't good". I just laid in bed, fell back asleep for another 2 hours. Was still fatigued upon waking but as the day has gone on my energy has lifted a little.

It's really hard to know for one if this is CFS and for two whether to rest completely or not. I'm certainly taking it easy on the advice given here and for the past few days have been forced to. But at the same time, it feels as though if I get going a bit and do something light my energy can lift somewhat. My home is a tip, due tothe fatigue, and I live alone so really needed to tidy as I have some workmen coming in. Managed to do much of the tidying and as I say, I was still fatigued but less so than when lying in bed. So again is it CFS? It's very confusing. I supposed I wait to see if theres any PEM, but again there seems no pattern to that. I can feel not too bad for half the day then bang out of nowhere I can barely do anything but lay in bed.

I think there are a lot of us that don't know if what we have is officially CFS. I'm in that bucket for sure.
In some ways it can be a diagnosis of exclusion, kind of like how IBS is the name when you can pinpoint exactly why you're constantly having diarrhea and/or constipation.

I think for you it would be best to try not and put a label what you have at this point. It's not like we can say, "You have CFS, here is a pill to cure it."
Right now you have fatigue, thirst and discomfort. I'd suggest keeping it at that.
I'm still a fan of a couple months of taking it easy, going to bed early, and stop researching for a bit.

It sounds like all the dangerous stuff has been ruled out so give your brain and body a break and "Let it be...."
It's remarkable how sometimes that alone will do the trick.

I really started to come out of a post viral fatigue situation in early 2020 when the ENT doctor said, "I think you feel worse than you are."

 

[Replenished]

I think there are a lot of us that don't know if what we have is officially CFS. I'm in that bucket for sure.
In some ways it can be a diagnosis of exclusion, kind of like how IBS is the name when you can pinpoint exactly why you're constantly having diarrhea and/or constipation.

I think for you it would be best to try not and put a label what you have at this point. It's not like we can say, "You have CFS, here is a pill to cure it."
Right now you have fatigue, thirst and discomfort. I'd suggest keeping it at that.
I'm still a fan of a couple months of taking it easy, going to bed early, and stop researching for a bit.

It sounds like all the dangerous stuff has been ruled out so give your brain and body a break and "Let it be...."
It's remarkable how sometimes that alone will do the trick.

I really started to come out of a post viral fatigue situation in early 2020 when the ENT doctor said, "I think you feel worse than you are."

Thank you. I probably need a break from researching and constantly trying to find answers to be fair.

Very wise words from your ENT doctor.

 

[hapl808]

I really started to come out of a post viral fatigue situation in early 2020 when the ENT doctor said, "I think you feel worse than you are."

Keep in mind that it was also this kind of thought process that allowed me to push through moderate right into severe, where I've remained housebound or bedbound for years. Before, rest and supplementation allowed me significant recovery. As many other people with more severe symptoms have recounted here, all those things seem to stop working when you're more severe.

I do think overly obsessive researching and panicking is counterproductive, but telling yourself you're fine probably works…until it doesn't work. And then it's too late.

 

[caledonia]

Your symptoms don't really sound like ME/CFS to me. Have you ruled out Sjogren's Syndrome?

https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216

 

[vision blue]

Some very quick thoughts

If you dona direct to consumer exone genetic test, i can find youve got a rare genetic cause

Any doc willing to give you IV fluids to test how you feel with them?

Do you have to get up to drink water?

9 hours during night but do you know sleep quality? Any chance at all you stop breathing or have seizures?

The swallowing thing seems relevent (

If a y tests turn lut a normal, post them

 

[Learner1]

@Replenished Sjogrens sounded worth looking into.

Were there any results in the red or yellow on any of the Genova tests? Which tests were run? I've found a lot of useful info from the NutrEval and Metabolomix+ tests. What were your ornithine, citrulline, arginine, ammonia, and B6 levels like?

As for the onion smell, this might have some clues:

https://thompsontee.com/blog/bromhidrosis-unpacking-excessive-body-odor/

Or is it more of a musky odor odor a fishy odor or a sulfurous odor? Checked for diabetes? Or trimethylaminurea? There may be some clues here:

https://www.medicalnewstoday.com/articles/sudden-change-in-body-odor#treatment

Have you had all of your minerals checked in urine or hair? Are you sufficient in calcium? It sounds like you've had it checked but thought I'd ask ...

This video explains a lot of what's going on in ME/CFS and likely long COVID. Dr vanElzakker explains what may be going in in the brain, while Dr. Proal explains what may be causing it.

It is likely given your description that you have multiple things going on.

Have you tried seeing Dr. Myhill?

 

[BrightCandle]

The constant thirst I really had for a very long time, until I started taking in electrolytes. For some reason I just need daily electrolytes drinks now and it solves the excessive thirst problem. Its worth a go, some ORS tablets or similar (you want the ones with glucose its an important part of the process) will get the job done surprisingly quickly if its that and they aren't dangerous otherwise.

 

[Replenished]

Your symptoms don't really sound like ME/CFS to me. Have you ruled out Sjogren's Syndrome?

https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216

I was tested for Sjogrens near the start of this and test came back negative. I also don't have dry mucas membranes, nose etc and don't have dry eyes which are more typically signs of Sjogrens. My dry mouth/thirst definitely appears linked to losing fluid/frequent urination.

I know you say the symptoms don't really sound like ME/CFS and I'd be happy enough to find that it's not the cause, but you'd be surprised how many people with the condition seem to have similar dehydration problems. Hence why I kept ending up on this forum when searching for answers.

 

[Replenished]

Some very quick thoughts

If you dona direct to consumer exone genetic test, i can find youve got a rare genetic cause

Any doc willing to give you IV fluids to test how you feel with them?

Do you have to get up to drink water?

9 hours during night but do you know sleep quality? Any chance at all you stop breathing or have seizures?

The swallowing thing seems relevent (

If a y tests turn lut a normal, post them

Sorry, what tests is it you are referring to?

Yes I have to get up to drink water and urinate, so the sleep is somewhat broken. I don't wake up struggling for breath so I assume I don't stop breathing/have sleep apnea or have seizures.

 

[Replenished]

The constant thirst I really had for a very long time, until I started taking in electrolytes. For some reason I just need daily electrolytes drinks now and it solves the excessive thirst problem. Its worth a go, some ORS tablets or similar (you want the ones with glucose its an important part of the process) will get the job done surprisingly quickly if its that and they aren't dangerous otherwise.

Thanks. I have tried various different electrolytes but it doesn't seem to touch it. No difference. The only thing that seems to help a little but only temporarily is high sugar drinks. Drinks that are dense, so smoothies, juices etc. But still it all get's dumped out shortly after and the thirst/unration cycle continues.

 

[Replenished]

I suppose often I feel more 'Depleted' than 'fatigued' although it's often hard to tell the difference. I certainly feel as though I don't have enough nutrition on board, feel deficient in something, yet no test shows any of this.

I feel as though I have a problems holding on to vitamins/minerals or utilizing calories efficiently. I can't say i'm massively hungry but I always feel depleted. It might be of note that my symptoms started shortly after a water fast.

The only thing that's really out of rang on my bloods is, DHEA is always very high. Cholesterol is always high, despite me being a healthy weight, and Testosterone is on bottom end of normal range.

Also recently had a hair mineral test done which I'll post here. I'm taking the advised mineral supplements based on the test results but again I've felt no improvement.