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ME/CFS

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By *neforuto OP   Man
2 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
2 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
2 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
2 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
2 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
2 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
2 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
2 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
2 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
2 weeks ago

Fantasy land in the SW

Thanks folks, Im not feeling so alone with it now

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By *b03Man
2 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
2 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
2 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
2 weeks ago

Lincoln


"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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