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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Fatigue.

Fuzzyhead

Senior Member
Messages
372
I have had m.e for 12 years but this last 2 months i have had debilitating fatigue. I have no energy what so ever and my eyes water and feel heavy and fatigued. I am also having night sweats, nausea and loose bowels.
Has anyone tried anything that helps with any of these?
 

Plum

Senior Member
Messages
512
Location
UK
Sorry to hear you're having a touch time. The biggest impact on my health has been diet. I went Paleo but now include potatoes twice a day with meals. Paleo helps increase nutrients and supplies a lot of vitamins and minerals. Night sweats for me come and go. Unless you have a hormonal imbalance causing this? Nausea = too many toxins for your liver to handle. Look into vege juices, milk thistle and other liver detox herbs. I've taken these daily since I was at 10% 3 years ago. Diet and liver detox has gotten me from 10 to 40% functioning.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I have had m.e for 12 years but this last 2 months i have had debilitating fatigue. I have no energy what so ever and my eyes water and feel heavy and fatigued. I am also having night sweats, nausea and loose bowels.
Has anyone tried anything that helps with any of these?

Some of us have had relief by tackling some of the fundamental problems that may be related to causation--viruses, infections, methylation, heavy metals, immune system etc., etc.!

For me changes in diet, supplements etc, help to a small degree, but I need to treat at a deeper level to get significant changes.

Best wishes,
Sushi
 

Fuzzyhead

Senior Member
Messages
372
Thanks plum. Which other liver detox herbs do you use? I just had a liver scan on Friday because my liver function test was high but it was all clear so maybe it is toxins. I bought some raw beet roots because someone said they were good detoxers.
 

Plum

Senior Member
Messages
512
Location
UK
Beets on their own juiced can be tough - I do 1 beet and 2 oranges through the juicer. Carrots are good to detox too, pair them with apples when juicing.
Milk thistle is the standard herb for liver detox. Dandelion is good too. Do a bit of a search for liver detox supplements - NOW does one I like as does Nature's Answer. You need to find one that works for you though.
I would research every single ingredient they contain so you know exactly what you're getting yourself into. Some might work against other conditions you have so please research. I can't stress that enough. Start with your worst symptom and when you have the energy learn as much as you can about it and ways to help it. When I first became ill 3 years ago I kinda tried dealing with everything all at once and it did me no good as my body was too sensitive to cope! So slowly and one thing at a time!
 

Fuzzyhead

Senior Member
Messages
372
I mixed the beets with carrot, apple, lemon, lime and grapefruit juice.
I can't stop thinking something else is going on because I have had m.e for 12 yrs and never felt like this, the nausea, fatigue, loose bowels, sweating and generally feeling of being unwell are really scaring me. I wouldn't know which symptom to start with to be honest.
 

Plum

Senior Member
Messages
512
Location
UK
I suffered from nausea every day for my whole life so I dealt with that first. The fatigue is a hard one to deal with and is something we have longterm. Loose bowels makes me think of digestive issue, parasites etc - all very common with ME. Sweating is often hormonal so if you've only recently gotten it I wouldn't worry too much for now.
Just had another thought - how loose do you mean? How often are you going? Juicing, changes in diet, taking magnesium, taking probiotics etc can make stools loose. Did you start doing something different and then get the loose bowels?
Feeling unwell with ME is scary. We're on our own with this and symptom randomly pop up. When I have a crash I am dizzy and disorientated, can't see properly and can barely stand. This lasts 6 to 8 weeks and then disappears. But it's taken me 3 years to realise this! When I first got ill I had a permanently twitching eye for over 2 months. Every 30 secs it would twitch - drove me mad! Dr said - relax! I thought I would go mad with it! But it went. It still comes back occassionally for a few days but I know now that it will pass. I do of course know that some people get symptoms that last years.
If I were you(but I am biased of course) I would deal with the nausea. In a couple of months it should be improved. Then if you have the money (?) look into a stool analysis - yeast, parasites, bacteria etc.
 

Fuzzyhead

Senior Member
Messages
372
It's just a bit looser and more frequent but its been like this for about 6 weeks and the nausea started the same time. I started feeling unwell at the end of November when I woke up with vertigo, head pressure and headaches and these seem to ease and then the nausea, loose bowels, fatigue, sweating started and now my back pains in either side. So I have all these now over 4 months.
How did you deal with the nausea? I have been having ginger tea etc but it doesn't seem to help and also put fresh ginger in with my juice. I force myself to eat because I never feel hungry or fancy anything.
 

Fuzzyhead

Senior Member
Messages
372
Also I hadn't done anything different before the loose bowels etc. When I first woke up with the vertigo etc 4 months ago I had been doing an anti candida diet the week before and I was using pro biotics and oregano oil tabs and I was getting pains in my spleen area so I stopped doing it on the Saturday and woke up on the Monday with vertigo etc. I thought at first it was an herx reaction but it can't have been because it wouldn't last 4 months.
 

Plum

Senior Member
Messages
512
Location
UK
It sounds like some sort of infection to me. Hard to know what with ME. Have you had a test for candida? I am not a fan of the candida diet but each to their own.
I think your vertigo is causing your nausea or at least is worth considering. You can get inner ear infections which cause vertigo - I get them.
Head pressure and headaches - check out food allergies and I've found Perrin therapy to be very good for my migraines as well as head and sinus pressure.
I got rid of my nausea by taking the liver detox supplements I told you about earlier. There is nothing food related that works for me with that.
The probiotics I take are Optibac daily wellbeing - I know a lot of people who like them. If you want to take oregano oil the best is P73. But if you're getting pain then clearly it's doing something your body doesn't like.
If yr struggling to eat you need to consider nutrient dense foods when you do - bone broth, eggs, raw milk, whey protein, vege juices etc. They're all easy on yr digestion but give maximum nutrients. Experiment and see what yr body likes.
 

Fuzzyhead

Senior Member
Messages
372
Are you in the uk? Do you mean the Perrin technique? If you do I saw him for 2 years about 2 years ago.
No I haven't had a candida test. It's a waste of time mentioning things like this to the gp because they don't believe in half of it do they?
That's what I keep saying I feel like I have an infection or low grade fever through night and when I first get up but as you say it's finding out where and what?
Thanks for all the info.
 

Plum

Senior Member
Messages
512
Location
UK
Yeah. It sounds like your body is trying to fight something off.

I don't mean a GP test - they're useless. You need to see a Naturopath or Nutritional Therapist who can order tests through Genova for you. Their stool analysis is good but expensive. If you think you have an infection you can try the P73 oregano - there's a fair bit of info out there about that stuff. Otherwise I have always tried to support my body through whatever healing it needs to do when I have a flare up.
Did you find Perrin useful?
Yes I'm in the UK
 

Fuzzyhead

Senior Member
Messages
372
Yes I went for 2 years but dr Perrin felt there was something blocking my progress and he thought my jaw was out of line so I went to a private dentist in huddersfield who said I had a problem with my tmj. I wear a bottom splint and see an osteopath every 6 weeks for the last 2 years and I was doing loads better. I stopped going to see Perrin because I couldn't afford both. Until November and then woke up with vertigo and I have just deteriorated since.
I don't know if the toxins have built up again.
I feel so Ill I can't stop feeling something else is going on but all my other bloods were ok.
 

Plum

Senior Member
Messages
512
Location
UK
Strange notion that TMJ would stop Perrin Therapy working for you. I have TMJ and haven't been told that's an issue with ME. I also don't see how it can block yr recovery. Why don't you find a cheaper Perrin Therapist?

I completely get your frustration - I crashed in November too and had a terrible few months but I guess I'm lucky in that I have a bad few months at 10% functioning and then get back to around 40% functioning.

If you know you have a problem with toxins, work on your liver. It might ease your body just enough to give it a chance to start fixing the other issues. Have you looked into the methylation protocol?
 

Fuzzyhead

Senior Member
Messages
372
I Was getting a lot of left sided headaches and my jaw was clicking etc, he said the left side of my jaw was out and blocking my flow of toxins on my left. Also i have 2 lymph nodes on my left that went down for about a year when i felt better but they have been up again since last year before i went downhill.I got really Ill after about 6 weeks doing the Perrin and had to go and stay with my mam for a couple of weeks. I live in Cumbria and I think theres a Perrin therapist about an hour away now but when I started Manchester was the nearest one.
Yes I have looked into the methylation protocol but I took a strong multivitamin last year and when I got My bloods done at the end of last year my vit b12 and folate was high so my gp said to stop taking them.
 

Plum

Senior Member
Messages
512
Location
UK
You should look into the lecture Rich did on the methylation cycle. Your b12 and folate can be high on conventional blood tests but still mask a problem as far as I know.
You should also look into the topic of functional testing - which is something your GP does not offer.
If you look at the anatomy of your jaw it is hard to see why TMJ blocks the flow of toxins. I just don't buy it and I think Perrin was giving an excuse which doesn't come out of the science. Clicking just means you've worn down your joint somewhat.
 

Fuzzyhead

Senior Member
Messages
372
Yes I have heard that about the bloods can mask a problem and I mentioned it to my gp and asked if my bloods were showing I had high levels of vitb12 but if my body wasn't using it and he said my red blood cells would be large and mine weren't. I ordered some methyl b12 and methylfolate but I have been scared to take them. You don't know what to do for the best or whose advice to go on do you? I thought maybe my liver function was high with having high levels of vit b12 so I am scared to take them.
I also tested positive for gastric parietal antibodies last year and my gp said usually people are anaemic who have this but he said I obviously wasn't because my vit b12 was high. He tested me again for these gastric antibodies the other week and they were negative this time so I am confused and don't know what to believe.
 

Plum

Senior Member
Messages
512
Location
UK
High folic acid masks B12 deficiency and folic acid makes blood cells appear normal that wouldn't be if the folic acid wasn't high. You really need to look into the lectures Rich gave on the protocol - they're available through links on the front of PR.
You shouldn't be taking anyone's word for what's going on with you. You need to start researching and learning so you can help yourself properly. If you don't feel happy trying something right now then don't BUT do learn about it so you can make an informed decision about your health for yourself.
 

Fuzzyhead

Senior Member
Messages
372
I did look into it and it says you should get tested for intrinsic factor antibody as well because this is what we use to bind to vit b12 and if we havent got it then it cant,but when my gp said all that I thought what's the point in even asking because they just have an answer for everything and rubbish anything we say. I do know and feel something different is going on because I have never been this fatigued, unwell and down ever in my whole 12 years of having it. I have never been anaemic so don't know what it feels like but I feel like the way I am feeling is what you would feel like if you were if you know what I mean?
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I have had good luck with LiverCare by Himalaya Herbal Healthcare (no financial interest, etc). Before I took it, I used a general detox herbal tea, then a liver detox herbal tea.