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ME/CFS

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By *neforuto OP   Man
5 weeks ago

Fantasy land in the SW

Having this bloody sucks. Ive always been highly sexed but nowadays it feels like my libido has fallen off a cliff. Blood tests are all good regarding testosterone and so on which only leaves the CFS. I have a diagnosis and have had it for a long time but it now feels that another part of my life is slipping away from me.

How do others manage this and the sense of loss it brings especially in relation to sex drive?

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By *icecouple561Couple
Forum Mod

5 weeks ago

East Sussex

I had to Google CFS . Chronic fatigue syndrome.

I don't have it so I have no useful advice for you. Are there any alternative therapies that help?

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By *rizonanMan
5 weeks ago

Swindon

I’ve had ME/CFS since 1985. It’s destroyed every hope and dream I’ve ever had in life.

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By *iltsguy38Man
5 weeks ago

swindon

Sorry to hear that one. I’m lucky that mine has never had that effect on me. Other than being wiped out whenever I get ill mine is quite mild now. I fear any flare ups though as I know how bad it can be. Hope you find some recovery

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By *neforuto OP   Man
5 weeks ago

Fantasy land in the SW

Its never really affected me sexually until recently, Im really hoping its another bizzare type of flare up and it will pass.

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By *ad NannaWoman
5 weeks ago

East London

I've been diagnosed with Fibromyalgia, and I have two forms of arthritis.

I've been in a 2/3 year flare up and my sex life has been hammered.

Rest and Lucozade is how I get through it.

I've stopped imagining how my sex life should be and I take everything moment by moment.

I've never had a high libido so I can go without sex, but when I have sex I like to fully enjoy it. So, I pace myself and say yes when I'm feeling up to using precious energy.

My long term partner knows me well enough to not push or pursue sex with me.

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By *rizonanMan
5 weeks ago

Swindon

Taking life moment by moment, day by day is the best way to survive this illness

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By *rish-blacksmithMan
5 weeks ago

Cork

I'm on the caring side so take all of this as second hand advice, but we've tried a lot.

High dose nsaids, oxygen therapy, amitriptyline, gabapentin,pregabalin, nicotine, physiotherapy.. Whatever else you have heard of.

The only real successes so far have been the boring and hard work ones. Ppl But I also see ME as being a broad heading for a number of conditions and everyone is going to need something different:

High sulphur diet, particularly rich in roasted green veg. Broccoli and asparagus. Lots of eggs

Therapy and reframing the thoughts on pain.

Yoga nidra

Extremely careful sleep management

Managing physical exertion.

Shit sucks buddies, and I hope it goes away for ye

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By *ophieslutTV/TS
5 weeks ago

Central

I've found that how we each respond is uniquely personal and it may take some time and effort to evaluate and find out what may help.

Remembering that much of our body can take several months, before changes take effect, can help to stop us expecting instant results.

I have had the best results from pacing myself at all times. This includes managing everything that's going on for me, after finding out how each thing impacts on me. Everything has a cost, everything we do, how we spend our time thinking does too, as well as our physical and relationship engagement with life and others.

Less can be more, especially if we ensure we value what we have and are doing.

Pay attention to your physical exercise, as evidence shows that how it impacts most people, is different from those with ME. A good exercise therapist should be able to guide you well, as managing your physical health is essential for physical and mental health.

Take the pressure off yourself and become your own best friend

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By *neforuto OP   Man
5 weeks ago

Fantasy land in the SW

Thanks folks, Im not feeling so alone with it now

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By *b03Man
5 weeks ago

Exeter

Diagnosed when I was 14 due to rare reaction to glandular fever.

Consider myself one of the lucky ones as was still able to finish school and live a mostly normal life. Fabbing included!

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By *imited 3EditionCouple
5 weeks ago

Live in Scotland Play in England

Have you tried homeopathy. There is an amazing practitioner who has worked with loads of clients with lyme disease. She says that there are a lot of ppl who unknowingly have this and symptoms can overlap with other conditions eg epstein barr virus can result in cfs but it can turn out not to be epstein barr but lyme disease.

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By *eautifully TwistedWoman
5 weeks ago

Bognor Regis

I have fibromyalgia it's horrible.

I have had it a long time now and to be fair I don't flare up as often now. It's not the same but similar symptoms.

I put myself on Benfotiamine which is equivalent to Thiamine it's naturlly occuring in the brain, Magnesium Glycinate and B12.

It has helped with sleep, brain fog etc. My vitamin levels apparently were fine but I found a big difference taking these supplements.

Good luck.

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By *andl2004Couple
5 weeks ago

Lincolnshire


"Having this bloody sucks. Ive always been highly sexed but nowadays it feels like my libido has fallen off a cliff. Blood tests are all good regarding testosterone and so on which only leaves the CFS. I have a diagnosis and have had it for a long time but it now feels that another part of my life is slipping away from me.

How do others manage this and the sense of loss it brings especially in relation to sex drive?"

Mr here, having this myself I can honestly one thing changed my life and that was a fully keto diet with zero carbs.

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By *ewSensationMan
3 weeks ago

Edinburgh

I have ME/CFS following long covid. It’s relapsing-remitting. I’ve been more or less housebound sometimes, other times fine for most if the day.

What has helped:

Low dose naltrexone (contact Dickson’s chemist for a consultation)

Fexafenadine 180mg 2x day (again, Dickson’s but you can get this at chemist/Aldi at slightly lower dose)

Famotidine 20mg 2x day (Dickson’s)

Hydrate aggressively with electrolytes - I like SIS brand, pink grapefruit. 3 tablets a day.

Lots of salt unless medically advised otherwise. Electrolytes help but you may need up to 10g/day total.

Vegus nerve stimulation. There are devices that do this via the ear but there are other ways such as humming, gargling, singing.

When in a crash, dextromethorphan can help a lot. This is in some OTC cough meds (Robitussin - use as directed)

If you have gut/bowel issued, then treat this as a priority. I use G-NiiB which helps a lot but is expensive. Also psyllium husk (1hr away from other meds and supplements) - much cheaper but different.

And I take a lot of supplements aimed at mitochondria and energy. It’s hard to know what works. I’ve worked with AI and biomedical research papers for over 2 years to try to refine it.

S-Tier (Elite / Must-Keep)

• G-NiiB Immunity (SIM01 synbiotic) — Still the highest-evidence gut–immune anchor (RCTs in Long COVID). Gut dysbiosis can indirectly worsen NK/mitochondrial issues.

• Taurine ~3 g/day — Strong boost. Supports mitochondrial Ca²⁺ handling, ATP production, and has anti-inflammatory effects relevant to NK dysfunction.

• Benfotiamine 300 mg — Excellent for mitochondrial energy metabolism and thiamine-dependent enzymes (Krebs cycle).

• B-complex (high-potency active-form) — Critical Krebs-cycle cofactors; supports overall energy metabolism disrupted by impaired Ca²⁺ signaling.

• Ubiquinol CoQ10 200 mg — Core mitochondrial electron transport support; directly relevant to mitochondrial Ca²⁺ dysregulation.

• N-Acetyl-Cysteine (NAC) 600 mg — Glutathione support reduces oxidative stress that can impair ion channels and mitochondria.

• Vitamin D3 4,000 IU + K2 — Immune regulation (including NK cells) and broad anti-inflammatory effects.

• Magnesium complex (incl. L-threonate) — Significant relevance boost. Magnesium is crucial for Ca²⁺ regulation, mitochondrial function, and TRP channel activity. L-threonate aids brain penetration.

A-Tier (High-Impact Keepers)

• Alpha-Lipoic Acid (ALA) 300 mg — Regenerates antioxidants and supports mitochondrial enzymes/Ca²⁺ handling.

• PQQ 20 mg — Mitochondrial biogenesis; helps compensate for dysfunctional energy production.

• Acetyl-L-Carnitine (ALC) 500 mg — Fatty acid transport into mitochondria.

• Luteolin 50 mg + Rutin 50 mg — Mast-cell stabilization and anti-inflammatory (NF-{¬zro=¬}B).

• Quercetin 400–800 mg/day + Bromelain 500 mg — Anti-inflammatory and mast-cell support.

• Omega-3 1,000 mg — Cytokine modulation.

• Geranylgeraniol (GG-Gold, 50 mg active) — Mitochondrial mevalonate/CoQ10 pathway support.

• Zinc L-Carnosine — Gut barrier repair + zinc for immune/NK cell function.

And most importantly, listening to your body and pacing… It’s an horrific illness but if “mild”, it’s possible to have a half normal life. The mental part is how when symptoms are very mild or absent, the mind tells you you don’t have it, then you over do it, and crash badly.

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By *ewSensationMan
3 weeks ago

Edinburgh

I should add that supps should be added one at a time a couple of weeks apart. The one I missed that I am sure gives me energy and helps with brain fog is nicotine patch (7mg). The trouble is that the energy should not be used necessarily… A good day for me means energy during the day to do things (no cardio) but I tend to crash in the evening.

It’s a case of one day at a time.

Libido definitely affected but not obliterated.

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By *elaninMaverickWoman
3 weeks ago

near Putney Heath


"Having this bloody sucks. Ive always been highly sexed but nowadays it feels like my libido has fallen off a cliff. Blood tests are all good regarding testosterone and so on which only leaves the CFS. I have a diagnosis and have had it for a long time but it now feels that another part of my life is slipping away from me.

How do others manage this and the sense of loss it brings especially in relation to sex drive?"

I have this. Diagnosed March 2026. Need to change my profile to say this. Fun fun with 3 disabilites...not.

I had to reconstruct my sexuality which is why I've been on Fab.

I do naturism, rope bondage and club swinging at a pace that my body can handle.

I won't lie. it's scary and I wonder if I'm going to wake up one day bed bound which to be fair is awful.

I'm lucky that I don't have the pain..for now..

I don't know if you have started treatments but that seems to help. A lot of the treatments seem to be psycho-somatic and I already had a lot of therapy and I do Shibari Rope bondage wshi is psycho-somatic.

I practice sex in a holistic way now. Tantic massage might help if you can find a practicioner or course. One of my poly partners is a masseur and he's very good and we really connect intimately and sexually from him touching me all over.

On Porn hub there are two guys who developed something called Sex Kung Fu and it's actually helped me to focus on breathing and sensations and atmosphere to spark my arousal.

Regular Gonzo, Anal porn unfortunately is not going to do it and the doctor from the ME/Clinic prescribed screen limits anyway to get the nervous system to calm down. Most swingers clubs are a phone-free environment so that helps a lot!! There's still a porn cinema though. Lol! I never watch the porn...I watch the real people having sex. Lol!

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By *elaninMaverickWoman
3 weeks ago

near Putney Heath


"I’ve had ME/CFS since 1985. It’s destroyed every hope and dream I’ve ever had in life."

I'm sorry to hear that. I'm too bloody-minded to give up but only recently diagnosed but I'm certain I had symptoms from age 12 when my periods started.

I fullfilled me dream to finish uni, live on my own, travel and I did have a husband...although he turn out to be a twat...the bad type of twat. Lol!

I've been incredibly lucky despite all the difficulties.

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By *elaninMaverickWoman
3 weeks ago

near Putney Heath


"I've been diagnosed with Fibromyalgia, and I have two forms of arthritis.

I've been in a 2/3 year flare up and my sex life has been hammered.

Rest and Lucozade is how I get through it.

I've stopped imagining how my sex life should be and I take everything moment by moment.

I've never had a high libido so I can go without sex, but when I have sex I like to fully enjoy it. So, I pace myself and say yes when I'm feeling up to using precious energy.

My long term partner knows me well enough to not push or pursue sex with me."

Noted Nanna.

My Safety buddy has Fibro and Sexual Trauma. She cannot do any of this lifestyle but she is so amazing at being able to support me in it.

I'm thinking of doing it for work and she joked yesterday that I can set up a dominatrix dungeon in her spare room to tie up men. lol!

With the ME/CFS I don't think I'll get that far as my own dungeon but it was a nice thought.

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By *elaninMaverickWoman
3 weeks ago

near Putney Heath


"I'm on the caring side so take all of this as second hand advice, but we've tried a lot.

High dose nsaids, oxygen therapy, amitriptyline, gabapentin,pregabalin, nicotine, physiotherapy.. Whatever else you have heard of.

The only real successes so far have been the boring and hard work ones. Ppl But I also see ME as being a broad heading for a number of conditions and everyone is going to need something different:

High sulphur diet, particularly rich in roasted green veg. Broccoli and asparagus. Lots of eggs

Therapy and reframing the thoughts on pain.

Yoga nidra

Extremely careful sleep management

Managing physical exertion.

Shit sucks buddies, and I hope it goes away for ye

"

The way my doctor at the ME/CFS hospital clinic explained it as a nervous system dysregulation.

I'm so lucky to escape the pain.

I tried to use ready meals to save energy but that failed and made me feel worse! So I'm on the egg diet too. Lol! I have social services carers 5 days a week to make sure I take my meds and eat adn don't burn the flat down. the fatigue makes me forgetful and clumsy.

I've a shit ton of therapy for BPD/EUPD.

The Shibari rope bondage that I do is a mixutre of yoga, pilates, tantra, deep muscle work and psycho-somatic and sensory body work.

I still have an annoying tendency to over work and over exert but I build in breaks now.

The sleep is trash and no rhythm or rhyme to it. The only thing that works is Shibari rope bondage workshop but I can't do that every day! lol!

Having the diagnosis was half the battle to know what to do!! Literally though I was dying or had dementia or a brain tumour....very very scary.

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By *elaninMaverickWoman
3 weeks ago

near Putney Heath


"Having this bloody sucks. Ive always been highly sexed but nowadays it feels like my libido has fallen off a cliff. Blood tests are all good regarding testosterone and so on which only leaves the CFS. I have a diagnosis and have had it for a long time but it now feels that another part of my life is slipping away from me.

How do others manage this and the sense of loss it brings especially in relation to sex drive?

Mr here, having this myself I can honestly one thing changed my life and that was a fully keto diet with zero carbs."

I wish I could go full Keto. when I do for whatever reason my blood sugar drops too low. Low slow-release carb works best for me.

Building more muscle also helped but that could be related to the estrogen dropping at my age. Also the rest-and-digest signals to my stomach vagus nerve when it has to process high protein. Whole foods work. Supplements less so.

Stress makes it worse, which is difficult because the BPD/EUPD and autism are stressful!!

I basically say that my emotions are dysregulated, my sensory system is dysregulated and my nervous system is dyregulated. I say a lymphatic massage therapist and he thinks my lymphatic system is dysregualted too.

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By *elaninMaverickWoman
3 weeks ago

near Putney Heath


"I should add that supps should be added one at a time a couple of weeks apart. The one I missed that I am sure gives me energy and helps with brain fog is nicotine patch (7mg). The trouble is that the energy should not be used necessarily… A good day for me means energy during the day to do things (no cardio) but I tend to crash in the evening.

It’s a case of one day at a time.

Libido definitely affected but not obliterated. "

I do the vagus nerve stimulation with breathing and food.

I don't think my stomach will respond to all those supplements..it seems to prefer whole foods. I already have to have supplementary iron, vitamin D and protein.

Nicotine--I should probably stay clear of ..addiction runs in my family.

What causes crashes for me are

1. dysregulation of any of my systems--yeah....not...sensory, lymphatic, emotional, nervous.

2. stress of all kinds and types. I've got a legal deadline and it's ruined my sleep with the heat. smh.

3. doing too much physically or mentally thinking.

I basically spend all day trying to pace.

I try to do 5 minutes of cardio daily, resistance training, one hour outside with no-screens, fresh air and sunlight, anti-inflammatory tea and a low heart rate acivity, 130 grams of protein. 30 minutes of neurodivergent sensory meditation- on the ground on my back, blackout blinds, meditation and white noise machine audio to follow, weighted blanket, mints in mouth and lavender spray. Social services carers help me cook and remember meds.

It's a lot but it seems to be working. Planning to retrain into a job that does not require screens or physical exertion or managerial stress!....something massage dominatrix carpenter. Lol!

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By *eralDeviantWoman
3 weeks ago

Hull


"I have ME/CFS following long covid. It’s relapsing-remitting. I’ve been more or less housebound sometimes, other times fine for most if the day.

What has helped:

Low dose naltrexone (contact Dickson’s chemist for a consultation)

Fexafenadine 180mg 2x day (again, Dickson’s but you can get this at chemist/Aldi at slightly lower dose)

Famotidine 20mg 2x day (Dickson’s)

Hydrate aggressively with electrolytes - I like SIS brand, pink grapefruit. 3 tablets a day.

Lots of salt unless medically advised otherwise. Electrolytes help but you may need up to 10g/day total.

Vegus nerve stimulation. There are devices that do this via the ear but there are other ways such as humming, gargling, singing.

When in a crash, dextromethorphan can help a lot. This is in some OTC cough meds (Robitussin - use as directed)

If you have gut/bowel issued, then treat this as a priority. I use G-NiiB which helps a lot but is expensive. Also psyllium husk (1hr away from other meds and supplements) - much cheaper but different.

And I take a lot of supplements aimed at mitochondria and energy. It’s hard to know what works. I’ve worked with AI and biomedical research papers for over 2 years to try to refine it.

S-Tier (Elite / Must-Keep)

• G-NiiB Immunity (SIM01 synbiotic) — Still the highest-evidence gut–immune anchor (RCTs in Long COVID). Gut dysbiosis can indirectly worsen NK/mitochondrial issues.

• Taurine ~3 g/day — Strong boost. Supports mitochondrial Ca²⁺ handling, ATP production, and has anti-inflammatory effects relevant to NK dysfunction.

• Benfotiamine 300 mg — Excellent for mitochondrial energy metabolism and thiamine-dependent enzymes (Krebs cycle).

• B-complex (high-potency active-form) — Critical Krebs-cycle cofactors; supports overall energy metabolism disrupted by impaired Ca²⁺ signaling.

• Ubiquinol CoQ10 200 mg — Core mitochondrial electron transport support; directly relevant to mitochondrial Ca²⁺ dysregulation.

• N-Acetyl-Cysteine (NAC) 600 mg — Glutathione support reduces oxidative stress that can impair ion channels and mitochondria.

• Vitamin D3 4,000 IU + K2 — Immune regulation (including NK cells) and broad anti-inflammatory effects.

• Magnesium complex (incl. L-threonate) — Significant relevance boost. Magnesium is crucial for Ca²⁺ regulation, mitochondrial function, and TRP channel activity. L-threonate aids brain penetration.

A-Tier (High-Impact Keepers)

• Alpha-Lipoic Acid (ALA) 300 mg — Regenerates antioxidants and supports mitochondrial enzymes/Ca²⁺ handling.

• PQQ 20 mg — Mitochondrial biogenesis; helps compensate for dysfunctional energy production.

• Acetyl-L-Carnitine (ALC) 500 mg — Fatty acid transport into mitochondria.

• Luteolin 50 mg + Rutin 50 mg — Mast-cell stabilization and anti-inflammatory (NF-{¬zro=¬}B).

• Quercetin 400–800 mg/day + Bromelain 500 mg — Anti-inflammatory and mast-cell support.

• Omega-3 1,000 mg — Cytokine modulation.

• Geranylgeraniol (GG-Gold, 50 mg active) — Mitochondrial mevalonate/CoQ10 pathway support.

• Zinc L-Carnosine — Gut barrier repair + zinc for immune/NK cell function.

And most importantly, listening to your body and pacing… It’s an horrific illness but if “mild”, it’s possible to have a half normal life. The mental part is how when symptoms are very mild or absent, the mind tells you you don’t have it, then you over do it, and crash badly.

"

This supplimemts list is great! Ive had chronic fatigue for 20years after i had glandular fever too.

Sourcing suppliments is my buggest challenge because of allergies and mcas reactions since covid.

But if your intentional, pace steadily and have reasonabke expectations of yourself you can increase capasity slowly.

Im in a crash atm because i lived for 4 days 3 weeks ago... Threw pacing out the window and just pushed so now im mostly bed/house bound but that will curve out.

Simply never expecting any sort of consistency from your body is the only way to remain sane i think.

Energy on all fronts will ebb and wain. Pushing and overexberting will always lead to a crash though. Just be patient and grab life when theres a window of opportunity.

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By *ewSensationMan
3 weeks ago

Edinburgh


"

This supplimemts list is great! Ive had chronic fatigue for 20years after i had glandular fever too.

Sourcing suppliments is my buggest challenge because of allergies and mcas reactions since covid.

But if your intentional, pace steadily and have reasonabke expectations of yourself you can increase capasity slowly.

Im in a crash atm because i lived for 4 days 3 weeks ago... Threw pacing out the window and just pushed so now im mostly bed/house bound but that will curve out.

Simply never expecting any sort of consistency from your body is the only way to remain sane i think.

Energy on all fronts will ebb and wain. Pushing and overexberting will always lead to a crash though. Just be patient and grab life when theres a window of opportunity. "

Absolutely agree. For me at least I have good days and weeks, even several weeks, but don’t seem to learn. My brain tells me I’m cured, and I do too much and crash again. Now, after 2 years, the crashes seem not to go into the next day, for now. But I do need to be horizontal (resting!) at about 6pm and that feeling can be quite urgent. The ME feeling for me is almost like being poisoned, and it creeps up fast. It’s like being jet lagged, with a dehydrated brain, and the first day of flu… I find it important to have acceptance but never give up hope and always think “this too shall pass”. Until then, pacing remains important, as does aggressive hydration, and remembering those things when symptoms are very mild…

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By *aughtydealcoupleCouple
3 weeks ago

Walmer, Deal

This thread has some really good advice might have to try some i have chronic fatigue syndrome type 2 diabetes and leukemia and a few more conditions some days are good fully functioning and then others days exhausted from everything

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By *eralDeviantWoman
3 weeks ago

Hull

Aggressive hydration 😂 oh too true and salt.. So much salt haha

Im over the moon i made it out to water the allotment today but talking to other plot holders.. 'hey how are you we havent seen you aaaages' i still ended up having to sit down on the floor and left right after.

Forgot the nicotine patch today, cant believe i still need them 4 years later.

Definatly feel like im proped up with suppliment patches, nic patches, methylene blue and quercertin atm

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By *isionofdignityWoman
3 weeks ago

reading

I never expected this to come up . I was diagnosed in 1986 when it was called yuppy flu . Now CFS coupled with long Covid .

I won’t go into a long list as majority have covered so much . I understand the lack of labido totally . Just know you are not alone x

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By *limboy68Man
3 weeks ago

st albans

Not a sufferer myself but my mother was so I understand how devastating this can be. What surprised me was an article I read 2 days ago(dont ask me where I saw it-I cant remember) where a new therapy had been tried. 75 people had claimed to be cured of their CFS! Apparently the condition can be triggered by a virus (not only one type) or a mental trauma. The body seems to go into a state of maintaining a physical reactions where the brain does not revert to its normal state but stays in a state where it thinks the malevalent stimulus is still present. The success comes from brain training to reverse the condition. I will try to search for the article and report back.

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By *limboy68Man
3 weeks ago

st albans

I found it!

75 cases of people with CFS claim they have been cured.

If you google the above, you can sed it.

Research by Someone at Goldsmiths,University of London.

I sure hope this helps.

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By *eralDeviantWoman
3 weeks ago

Hull

meassociation.org.uk/2026/07/me-association-comments-on-a-report-containing-unsubstantiated-claims-regarding-brain-retraining-as-a-cure-for-me-cfs-and-long-covid/

This was the ME association released in reply.

All good skills for a toolkit in managing this condition though

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By *andl2004Couple
3 weeks ago

Lincolnshire

I'd suggest going on keto for 4 weeks, keep net carbs below 20g if you have the craving. First week will be hell, week 2 better. By week 3/4 you'll be running on ketone not glucose. Glucose is what kills people, it's not a friendly compound.

Interesting fact, cancer feeds on glucose but cant on ketones. We were born meat eaters, the modern world and crap food has made us all much more ill.

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By *elaninMaverickWoman
3 weeks ago

near Putney Heath


"

This supplimemts list is great! Ive had chronic fatigue for 20years after i had glandular fever too.

Sourcing suppliments is my buggest challenge because of allergies and mcas reactions since covid.

But if your intentional, pace steadily and have reasonabke expectations of yourself you can increase capasity slowly.

Im in a crash atm because i lived for 4 days 3 weeks ago... Threw pacing out the window and just pushed so now im mostly bed/house bound but that will curve out.

Simply never expecting any sort of consistency from your body is the only way to remain sane i think.

Energy on all fronts will ebb and wain. Pushing and overexberting will always lead to a crash though. Just be patient and grab life when theres a window of opportunity. "

Hugs. I'm determined to pace which means I threw a whole load of things out the window.

I went to a swingers party yesterday and I graciously had one of my poly partners drive me.

while I was getting ready, I realise that shaving my legs and bikini area was too many energy spoons so I slapped some hair removal cream on bist while I washed my hair. Lol! Hair washing is a lot of energy, especially for kinky, coily curly hair. Thank God I can get away with not blowdrying!

That said it's easier for me because I live alone, I don't have a primary nesting partner and no children or pets and currently not working so I can focus entirely on my health...um and legal drafting...DWP PIP and former employer for disability discrimination. I'm also lucky to have social services carers coming in Monday to Friday to reduce some of the physical and mental load.

At the party last night, I took lots of breaks and paced myself and took food and hydration and sensory breaks. I feel ok today. I only realistically only do a swinger or kink event once a week. any other social stuff is usually me just sitting around in the pub, drinking water and listening to kinkmates and neighbours because even talking takes a lot of energy.

Pacing is fustrating but I realise that is my life now. My former employer would not allow me to pace or take sensory breaks as a reasonable adjustment at all!! No wonder I was so ill to the point of being bed bound also. My last bedbound instance was last year in May 2025, when I refused to go back to work without things in place. I've managed despite no diagnosis (until March 2026) to not have a severe bed bound crash again.

May last year I took up weightlifting because I thought all my symptoms were do to perimenopause and since gaining more strength and muscle, I felt a lot better but my weightlifting trainer built me up very slowly knowing that I had injuries and all these weird symptoms. it took 8 weeks to go from barely being able to balance on one foot to regaining a strong stance on one foot. I say him again and he told me to take longer breaks inbetween exercises and sets. I managed to figure out that I should only do 5 minutes of cardio and then 3 set of 8 compoud movements Maximum. I only exceed that if I'm with the trainers because they are watching my energy levels and alter the exercises if I'm struggling.

Yeah there will always be ups and downs.....sigh as with nealry anything in life.

I definitely agree with how unpredictable this illness is and it's probably the scaries thing for me. I try not to dwell on it and focus on what I can do.

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By *elaninMaverickWoman
3 weeks ago

near Putney Heath


"

This supplimemts list is great! Ive had chronic fatigue for 20years after i had glandular fever too.

Sourcing suppliments is my buggest challenge because of allergies and mcas reactions since covid.

But if your intentional, pace steadily and have reasonabke expectations of yourself you can increase capasity slowly.

Im in a crash atm because i lived for 4 days 3 weeks ago... Threw pacing out the window and just pushed so now im mostly bed/house bound but that will curve out.

Simply never expecting any sort of consistency from your body is the only way to remain sane i think.

Energy on all fronts will ebb and wain. Pushing and overexberting will always lead to a crash though. Just be patient and grab life when theres a window of opportunity.

Absolutely agree. For me at least I have good days and weeks, even several weeks, but don’t seem to learn. My brain tells me I’m cured, and I do too much and crash again. Now, after 2 years, the crashes seem not to go into the next day, for now. But I do need to be horizontal (resting!) at about 6pm and that feeling can be quite urgent. The ME feeling for me is almost like being poisoned, and it creeps up fast. It’s like being jet lagged, with a dehydrated brain, and the first day of flu… I find it important to have acceptance but never give up hope and always think “this too shall pass”. Until then, pacing remains important, as does aggressive hydration, and remembering those things when symptoms are very mild…"

My brain spent years being hyperindependent and overachieving and now can't figure out how to lie there and do nothing. Lol!

Even the carers have to tell me to sit down when they are doing my breakfast and cleaning because my brain has this random urge to get up and help!

Hydration isn't my problem. Learning to agressive relax and rest is. Lol! Basically hearing my parents and teachser and grandma saying just lying down is lazy! Well since falling over and chipping a tooth, i realised that I can no longer push my body..unless I want some more chipped teeth and concussions.

It's definite a training and "turning" of the mind exercise to stick to a routine even when you feel good so as not to overreach, overexert and overstimulate when symptoms are mild.

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By *elaninMaverickWoman
3 weeks ago

near Putney Heath


"This thread has some really good advice might have to try some i have chronic fatigue syndrome type 2 diabetes and leukemia and a few more conditions some days are good fully functioning and then others days exhausted from everything "

Hugs. Those combinations are extremely hard to deal with.

One of my poly partners has diabetes and I watched him struggle through it.

All I can say is the popular tagline "F. cancer". I've not encountered it personally but watching other people who had their friends and family members go through it...it's indescrible to me the distress.

The fluctuations in functioning drive me bonkers for sure. If it wasn't for my mental health team and peers I would be a psych hospital inpatient for sure. They and the lifestyle keep me relatively sane.

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By *elaninMaverickWoman
3 weeks ago

near Putney Heath


"Aggressive hydration 😂 oh too true and salt.. So much salt haha

Im over the moon i made it out to water the allotment today but talking to other plot holders.. 'hey how are you we havent seen you aaaages' i still ended up having to sit down on the floor and left right after.

Forgot the nicotine patch today, cant believe i still need them 4 years later.

Definatly feel like im proped up with suppliment patches, nic patches, methylene blue and quercertin atm"

I'm on the floor at least twice a day intentionally. One because my whole body feels stiff and I need to do some rope work or stretching. Two, because it's the only thing that makes the Autism and ME/CFS feel balanced, grounded and regulated. I do not know the theory behind it. All I know is that it works and I don't have to worry about falling over due to autistic clumsiness and/or ME/CFS dizziness, brain shutdown or vertigo/ orthostatic intolerance.

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By *elaninMaverickWoman
3 weeks ago

near Putney Heath


"I never expected this to come up . I was diagnosed in 1986 when it was called yuppy flu . Now CFS coupled with long Covid .

I won’t go into a long list as majority have covered so much . I understand the lack of labido totally . Just know you are not alone x"

The Yuppie Flu makes sense to me because my management plan involves avoiding screens and the middle class in westernised industrialised capitalist societies started staring at screens for 12 hours a day in the 80s.

One of these health podcasters called it decision overload/decision fatigue. We make for more decisions than say an 19th century factory worker or a medieval farmer or blacksmith or weaver or a cave man. That makes sense for me because my brain acts like a computer that once overloaded, runs out of RAM and shuts down. Same thing happens if I overheat like a computer.

People also started travelling more in the 80s so viruses could jump so much easier between populations. One doctor on YouTube described COVID as an immune system overload and I thought "yup overload your system, any system in the body and you brain and body shuts down."

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By *elaninMaverickWoman
3 weeks ago

near Putney Heath


"Not a sufferer myself but my mother was so I understand how devastating this can be. What surprised me was an article I read 2 days ago(dont ask me where I saw it-I cant remember) where a new therapy had been tried. 75 people had claimed to be cured of their CFS! Apparently the condition can be triggered by a virus (not only one type) or a mental trauma. The body seems to go into a state of maintaining a physical reactions where the brain does not revert to its normal state but stays in a state where it thinks the malevalent stimulus is still present. The success comes from brain training to reverse the condition. I will try to search for the article and report back. "

Interesting, As I have so far escaped the painful side of ME/CFS, the clinic doctor at Royal London Hospital for Integrated Medicine wants to send me for all kinds of..."brain training"- Some of it is bog standard psychotherapy and some of it "autogenic training"(-no idea what this is) and "yogic practices"

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By *elaninMaverickWoman
3 weeks ago

near Putney Heath


"I found it!

75 cases of people with CFS claim they have been cured.

If you google the above, you can sed it.

Research by Someone at Goldsmiths,University of London.

I sure hope this helps. "

Thanks so much

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By *elaninMaverickWoman
3 weeks ago

near Putney Heath


"meassociation.org.uk/2026/07/me-association-comments-on-a-report-containing-unsubstantiated-claims-regarding-brain-retraining-as-a-cure-for-me-cfs-and-long-covid/

This was the ME association released in reply.

All good skills for a toolkit in managing this condition though"

Good stuff. I have a high volume printer now to stop me staring at screens.So I print off the webpages and read them or I use an audio webpage reader.

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By *elaninMaverickWoman
3 weeks ago

near Putney Heath


"I'd suggest going on keto for 4 weeks, keep net carbs below 20g if you have the craving. First week will be hell, week 2 better. By week 3/4 you'll be running on ketone not glucose. Glucose is what kills people, it's not a friendly compound.

Interesting fact, cancer feeds on glucose but cant on ketones. We were born meat eaters, the modern world and crap food has made us all much more ill."

Noted. The low blood sugar gives me the dizzy. Not keen on combining that with the dizziness from autism and ME/CFS. I'm trying to avoid falling flat on my face and chipping another tooth again! Lol1

Maybe I will try it when I'm on a 2-week vacation. At the moment I'm on a Mediterranean, Low glycemic idex/glycemic load diet and my body seems to like that.

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By *neforuto OP   Man
3 weeks ago

Fantasy land in the SW

I received this via a PM. It maybe of help to others.

My (female) partner has had some sort of post-viral syndrome similar if not identical to CFS. We worked out that it was some failure of the electron transfer chain in mitochondria and started her on CoQ10 which seemed to help a bit, but what really worked (and it doesn't for everyone...) was hyperbaric oxygen. Often available from MS charities at around £20 a session, she did every weekday for 2 months, and is now down to 1 a week. It worked wonders.

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By *aughtydealcoupleCouple
3 weeks ago

Walmer, Deal


"This thread has some really good advice might have to try some i have chronic fatigue syndrome type 2 diabetes and leukemia and a few more conditions some days are good fully functioning and then others days exhausted from everything

Hugs. Those combinations are extremely hard to deal with.

One of my poly partners has diabetes and I watched him struggle through it.

All I can say is the popular tagline "F. cancer". I've not encountered it personally but watching other people who had their friends and family members go through it...it's indescrible to me the distress.

The fluctuations in functioning drive me bonkers for sure. If it wasn't for my mental health team and peers I would be a psych hospital inpatient for sure. They and the lifestyle keep me relatively sane."

Thankyou they can be challenging as what treatment works for one condition makes another condition worse and as for eating well you cant win but lucky I have good support from hubby and grown up kids

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By *elaninMaverickWoman
2 weeks ago

near Putney Heath


"I received this via a PM. It maybe of help to others.

My (female) partner has had some sort of post-viral syndrome similar if not identical to CFS. We worked out that it was some failure of the electron transfer chain in mitochondria and started her on CoQ10 which seemed to help a bit, but what really worked (and it doesn't for everyone...) was hyperbaric oxygen. Often available from MS charities at around £20 a session, she did every weekday for 2 months, and is now down to 1 a week. It worked wonders."

I heard something about the mitochondria link before.

I can't afford to spend 1200 on it, though.

Suffering a mild PEM today, probably a combination of the heat, useless ovulation and legal drafting all day until 21.30 pm last night.

Neglected my partnerships and friendships while trying to push through.

Sucks...in a bad way..not the good sucks. Lol!

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By *elaninMaverickWoman
2 weeks ago

near Putney Heath


"This thread has some really good advice might have to try some i have chronic fatigue syndrome type 2 diabetes and leukemia and a few more conditions some days are good fully functioning and then others days exhausted from everything

Hugs. Those combinations are extremely hard to deal with.

One of my poly partners has diabetes and I watched him struggle through it.

All I can say is the popular tagline "F. cancer". I've not encountered it personally but watching other people who had their friends and family members go through it...it's indescrible to me the distress.

The fluctuations in functioning drive me bonkers for sure. If it wasn't for my mental health team and peers I would be a psych hospital inpatient for sure. They and the lifestyle keep me relatively sane.

Thankyou they can be challenging as what treatment works for one condition makes another condition worse and as for eating well you cant win but lucky I have good support from hubby and grown up kids "

That's Good on the support system. My support system is peers and professionals. My family, friends and partners don't have capacity for my conditions.

Just had my carer in. Thank God because I'm in no condition to be even pouring boiling water for the tea.

Don't fancy a trip to A & E.

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By *ove2pleaseseukMan
2 weeks ago

Hastings


"I've been diagnosed with Fibromyalgia, and I have two forms of arthritis.

I've been in a 2/3 year flare up and my sex life has been hammered.

Rest and Lucozade is how I get through it.

I've stopped imagining how my sex life should be and I take everything moment by moment.

I've never had a high libido so I can go without sex, but when I have sex I like to fully enjoy it. So, I pace myself and say yes when I'm feeling up to using precious energy.

My long term partner knows me well enough to not push or pursue sex with me."

How did you get diagnosed with fibromyalgia, I can't even get a GP appointment when I need one.

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By *elaninMaverickWoman
2 weeks ago

near Putney Heath


"I've been diagnosed with Fibromyalgia, and I have two forms of arthritis.

I've been in a 2/3 year flare up and my sex life has been hammered.

Rest and Lucozade is how I get through it.

I've stopped imagining how my sex life should be and I take everything moment by moment.

I've never had a high libido so I can go without sex, but when I have sex I like to fully enjoy it. So, I pace myself and say yes when I'm feeling up to using precious energy.

My long term partner knows me well enough to not push or pursue sex with me.

How did you get diagnosed with fibromyalgia, I can't even get a GP appointment when I need one. "

I have the NHS app and my GP allows me to write on it as to what my symptoms are. As I got more and more sick and unable to work, they caved and sent me to Chronic fatigue clinic. I never saw them in person. Lol! The referral took a year and I saw the nurse for blood tests and the ME/CFS clinic doctor in person.

They have to rule out the other causes of the fatigue and pain. For me I'm active and have no high blood pressure, high cholestorol or high blood sugar. Hormones are in the normal ramge for the NHS.(Private says it's borderline perimenopausal)

The biggest give away for me was the PEMs sure i could walk 30k steps in a day but then I can't get out of ned for 2 days. Then stress at work made it harder and I started being stuck i doors for 6 weeks and 12 weeks. Didn't fall over or pull a muscle.

Don't give up if you know deep down somehing is wrong. Although I havent started official clinic treatment, the self help stuff has been really working for me in only 4 months since diagnosis.

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