My CFS is heaviest in the morning, and lessens considerably throughout the day?

[hb8847]

Hi,

I've had CFS for around 5 years now (am a 31yo male) and heavy depression for about 10 years. I'm making progress but still trying to figure out exactly what's going on with me and whether anyone here has any insight?

Since getting CFS my symtoms are as follows:

- I generally wake up very gradually and a bit dazed, as if emerging from a coma. During this period I begin to get very achey and tired in my joints, particularly in my back, to the extent that I can't really move, even onto my back. I tend to just read my phone on my side during all this.

- Over a number of hours these symptoms gradually ease up to the extent that I first can sit up and then get out of bed. Currently the latter comes about 5hrs after waking but that can vary significantly depending on how well my recovery is going.

- Once up I am still very fatigued, but able to function (e.g. make a simple meal), but any more than that leaves me out of breath.

- Gradually over the day these symptoms will ease. Often by the evening I am able to be considerably more active - this is generally when I'll go to the shops or whatever.

- Then going to bed I feel largely OK; definitely still a long way off what would be considered "healthy" but nothing like I am in the morning. During the night if I have to get up to pee I don't really feel achey. But then after a full sleep, when I wake up properly is when it all hits me again and the cycle resumes.

Additional info: I know I have SIBO and some methylation issues. I react strongly to glutathione supplements so I assume I'm deficient there.

My inclination is these specific symptoms are due to problems detoxifying and that the subsequent toxin overload is overwhelming my body and triggering an immune response, hence the achiness in my joints.

The clues I'm mainly using for this are (1) the glutathione deficiency and (2) the fact I've read that the liver does most of its work during deep sleep, hence why I get such heavy symptoms in the morning.

This is just guesswork though and if anyone has any insight into what's going on here, or has had a similar experience, I'd be very grateful for your input.

Many thanks, and wishing everyone here all the best during these anxious times.

Hugo

 

[xebex]

hi Hugo, yes i agree with you that your symptoms are due to detoxing and potential glutathione issues. There could also be other issues, for example, for me cutting gluten, sugar and preservatives/processed foods greatly improved the morning awfulness. I tend to nowadays wake up feeling great but then get worse through out the day as the toxins from activity build up, if i'm not active i don't get any kind of toxin build up so i believe i've eliminated the food issues and toxins from external sources.

Have you tried NAC instead of glutathione? NAC, selenium and molybdenum are precursors to glutathione and help your body make it by itself rather than just giving it straight glutathione. It might be more helpful to you.

here's a list on iherb of supps that i'm thinking of getting (i'm not intending on selling you anything its just worth looking at for ideas.) It's based on the supplements in the energy blueprint protocol and on the supplement that Dr Jon Kaiser, M.D designed to work with Ritalin, though he currently sells one with caffeine as the energy supplier. I'm making my own because i can't tolerate B vitamins.

https://secure.iherb.com/tr/list?id=36758847&rcode=HAN9419

its also worth adding vitamin C to that protocol, and the energyblue print uses NT factor which i currently can't tolerate, but hope to bring it in later.

 

[xebex]

hugo, i also just read in the b12 protocol that glutathione can induce b12 deficiency almost immediately so you could have a b12 issue rather glutathione issue, the problem with all this is not really knowing what's going on, and supplements actually causing worse problems. This is why my list on iherb, is currently staying on iherb and i haven't bought any of them yet! I have recently had some luck with NAC in the last two weeks, no bad effects so far so i'm assuming i don't have a b12 issue, but you never know when the supps will start creating some kind of bad reaction.

Something that has helped with my food detox issue is intermittent fasting, I don't eat any carbs after 6pm and then have breakfast at 10am this give my gut around 8 hours of not having to do anything!

 

[Mary]

I generally wake up very gradually and a bit dazed, as if emerging from a coma. During this period I begin to get very achey and tired in my joints, particularly in my back, to the extent that I can't really move, even onto my back

It could be a couple of different things. One thing that comes to mind is acidity. When I'm acidic, I wake up feeling very achy and it also makes me very tired. 1/4 or 1/2 teaspoon of baking soda in 8 ounces of water helps relieve this. Unfortunately baking soda also raises my BP but if I add an equal amount of potassium bicarbonate, that helps with my BP a little.

Another possibility is that your cortisol may be low in the morning which is very common with ME/CFS. I don't know if this would cause the achiness you get, but it could definitely cause fatigue. It might be good to get your cortisol levels tested.

My inclination is these specific symptoms are due to problems detoxifying and that the subsequent toxin overload is overwhelming my body and triggering an immune response, hence the achiness in my joints.

I used to get a lot of detox symptoms, but mine primarily involved my digestion - it would just feel off, some loss of appetite, fuzzy feeling brain (I think from mercury), fatigue. Glycine helped me enormously with this, I think it got my detox pathways working properly.

 

[Diwi9]

I have the same symptom rhythm over the day. Bad in the mornings...with gradual improvement. One caveat, however, is that once in a while I wake up extra early and I feel great...after a few hours I suddenly get super tired and must fall back asleep. When I wake up the second time (2-3 hours later), I feel awful.

 

[godlovesatrier]

I had this symptom graduation over wakeful hours consistently in the first few years of being sick. When I relapse long enough (exertion over several days) I do begin to notice a slowdown, characterised by feeling pretty good after my main evening meal. Saying that my blood pressure can often drop after food, if I eat wheat my muscles become quite badly fatigued, if I eat dairy I have worsening neurological symptoms. Dairy and eggs are very bad for my neurological symptoms overall. Wheat is bad for my physical symptoms.

I eat a high-ish around 80g protein per day diet, up to 130g if I actually need that much. This feeds the brain nicely and stops the muscles from behaving as strangely. But as with all things it only gets you so far.

So yes your symptoms are very similair to how mine were and still are. I wake up sometimes feeling fantastic, this normally lasts an hour or two before neurological symptoms will come in. I'm still able to work however and after doing several different changes over the last 3 years my symptoms have actually improved greatly. But any excercise even walking once or twice a week will set me back rather quickly.

 

[Wolfcub]

I quite often feel worse in the mornings then improve symptom-wise (on a bad day) in the evenings.
Just occasionally I wake up feeling quite good, but dip down horribly after breakfast, with chills and shaking.

Yesterday I felt the morning malaise from the moment I opened my eyes, with a whole package of crash symptoms flaring -all day long and was unable to eat much except what I forced down me (banana and dry oatmeal crackers.) Zero appetite. Yet suddenly at 9:30 at night I felt quite normal and hungry, and ate a healthy light dinner then.
But with me, I don't get muscle pain, just my own "symptoms", which remit and relapse for 2 years. Those are the same symptoms as the initial illness which set off ME/CFS.

I understand feeling rough in the mornings and better in the evenings.

Sometimes it's as if something which happens in sleep (especially a good healthy type sleep) is doing me some damage! Blowed if I can figure out what!

 

[HABS93]

This has been happening to me for almost two years. Wake up feeling hungover almost. Minus the headache and nauesous . Interesting to hear the liver works it's hardest during sleep. Maybe because we are.all.overloared with bacteria and other things that the liver can't handle all of it. Thus we wake up with those toxins . Don't know what anwser is though :/

 

[wigglethemouse]

Many of us have low Cortisol in the morning that normalises by evening that could account in part for this. There is a spit test with collection morning, noon, evening, night and then you can see how you compare to the norm. The report I received stated "suboptimal diurnal cortisol pattern.........consistent with HPA axis dysfunction".

I think it was the Diurnal Cortisol test listed here :
https://www.doctorsdata.com/salivary-hormones/

 

[Diwi9]

Many of us have low Cortisol in the morning that normalises by evening that could account in part for this. There is a spit test with collection morning, noon, evening, night and then you can see how you compare to the norm. The report I received stated "suboptimal diurnal cortisol pattern.........consistent with HPA axis dysfunction".

I think it was the Diurnal Cortisol test listed here :
https://www.doctorsdata.com/salivary-hormones/

I took this test was low within the normal range. This is a dysregulation that affects some, but I believe there is a yet undiscovered brain mechanism responsible for this particular situation. Sometimes it's hard to believe that such an interesting and complex illness is basically ignored...when there is so much to learn. We carry clues that should create huge interest and curiosity.

 

[Prefect]

I'm of the opinion Glutathione and detoxificatin methylation issues have taken away the narrative on the real issues. Most cfs patients get better as the day goes by. In my opinion this has to do with dysfunctional HPA axis regulation. Cortisol should be highest in the morning but due to various mechanisms not functioning in us, it's NOT. I use nicotine to correct this problem. https://www.healthrising.org/forums...rugs-for-chronic-fatigue-syndrome-me-cfs.341/ More patients should refocus on Dr Goldsteins doctrine .

 

[HABS93]

@Diwi9 Can someone award you a trophy because this is what angers me everyday. Why the F*** are we not having so much research on a illness millions suffer from. I'm so sick of doctors and there well I have ritalin for faitgue. DRUGS are not the answer. I tried modafinil and Ritalin and was up for 20 hours. Got really sick feeling . Crashed for almost a week. Could barely make myself food. Weed causes a good feeling of dopamine for 10m then a huge crash followed. Nevermind my tremors can't even handle caffiene. So clearly drugs just amp the system up and what goes up must come down. We have a bunch of clues and very soon someone will put the puzzle together. Also everyone with autoimmunity disease should look up T-Guard Xenikos . Very fascinating!

 

[HABS93]

@Prefect You use nicotine?? How do you get nicotine not from a cigarette though?

 

[Prefect]

habs93 I actually smoke cigarett

@Prefect You use nicotine?? How do you get nicotine not from a cigarette though?

I smoke a pack a day of sigs. I don't condone it so you could use a patch or gum. Life is too short to be crippled by by this condition. I'd rather die being vivid and alive in the mornings.

 

[Diwi9]

@HABS93 - The whole community deserves a trophy...maybe one day we will live to see a moment when this illness is actually recognized! BTW - Like you, I cannot handle stimulants. When I first got ill my doctor prescribed me Adderall so I could work...it just about took me out. Life-long coffee drinker and cannot handle caffeine anymore either.

@Prefect - A biomarker will help separate us. I think these treatments really help some, but it's clear we are a motley group lumped into one DX. I always find it interesting to find other patients who have the same odd symptom experiences that I have. And...yes to Dr. Goldstein...he was on the right line of inquiry and investigation...for some of us!

 

[Judee]

Same thing happens to me. I have sleep inversion so am awake til about 4am. From 5pm to 4am are my better hours. The other times, frankly, stink.

I just think it has something to do with this disease because it is so common a feature of this. I wonder if any of the researchers have used this cycle to figure out what is going on with us. @Janet Dafoe (Rose49) do you know? Perhaps, it could be valuable.

Many of us have low Cortisol in the morning that normalises by evening that could account in part for this.

I've done two cortisol tests over about a 10 year period and for me my cortisol levels have actually been a bit elevated in the mornings both times--actually my 2007 test showed my levels very elevated throughout the day but my environmental doctor had me on a lot of iodine as well as Dhea during that time so maybe that affected it.

 

[Prefect]

Same thing happens to me. I have sleep inversion so am awake til about 4am. From 5pm to 4am are my better hours. The other times, frankly, stink.

I just think it has something to do with this disease because it is so common a feature of this. I wonder if any of the researchers have used this cycle to figure out what is going on with us. @Janet Dafoe (Rose49) do you know? Perhaps, it could be valuable.



I've done two cortisol tests over about a 10 year period and for me my cortisol levels have actually been a bit elevated in the mornings both times--actually my 2007 test showed my levels very elevated throughout the day but my environmental doctor had me on a lot of iodine as well as Dhea during that time so maybe that affected it.

Free Cortisol is not the same as the same cortisol that dexamethasone test releases. You need an endocrinologist for that. And good luck getting one of those fuckers.

 

[Prefect]

Same thing happens to me. I have sleep inversion so am awake til about 4am. From 5pm to 4am are my better hours. The other times, frankly, stink.

I just think it has something to do with this disease because it is so common a feature of this. I wonder if any of the researchers have used this cycle to figure out what is going on with us. @Janet Dafoe (Rose49) do you know? Perhaps, it could be valuable.



I've done two cortisol tests over about a 10 year period and for me my cortisol levels have actually been a bit elevated in the mornings both times--actually my 2007 test showed my levels very elevated throughout the day but my environmental doctor had me on a lot of iodine as well as Dhea during that time so maybe that affected it.

Try mirtazapine (remeron). Did wonders for sleep, but be aware the first week or so it works TOO well. I read about a guy here that slept for 4 days on it when he tried it. It takes your body to adjust. In the mornings I use tobacco to wake up, which also has the advantage of inducing Remeron out of your system,

 

[Wayne]

Try mirtazapine (remeron). Did wonders for sleep, but be aware the first week or so it works TOO well.

Also to be aware of, is that mirtazapine can cause tinnitus, something people with ME/CFS may be more susceptible to.​

 

[Float]

If you eat in the few hours before bed then stop. If you can try time restricted eating or intermittent fasting, then do. The earlier in the day you eating window, the better as far as my experience tells. The liver needs recovery overnight, which is why i am mentioning TRE and IF.
If you eat before sleeping, (and I assume youre eating as natural and healthy as possible already, without carbonated or sugary drinks and smoking), then you should give this a try for at least two weeks.
8am-4pm was my best east window, Forcing myself up at 5am, eat 8-4. and id be asleep again by 8pm if not before.