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Does anything work for chronic fatigue?

(74 Posts)
SinkGirl Tue 14-Jan-20 19:25:21

I am really desperate, if anyone could help I’d so appreciate it.

I was diagnosed with ME in 2008. By 2011 I had to stop working as I couldn’t function even with reasonable adjustments. (I also have endometriosis and adenomyosis so chronic pain on top which doesn’t help). I had a few very bad years but after a few years of light self employment, things were much improved.

DH and I decided to try for a baby - he works from home so is around if needed and we had a great plan, but we ended up having twins and they both have disabilities. I’ve been through phases where things aren’t too bad but right now I’m completely on my knees. It’s been a stressful six months dealing with EHCPs but that’s coming to an end (until the six month review of course!) and various other things.

The last few days my fatigue has been so bad I’ve barely been able to move. Today has been horrendous - the twins have literally watched nursery rhymes on the tv all day while I lie on the sofa, only getting up to make them food, change nappies, get drinks etc. I feel like an absolutely useless parent right now. Nothing specific seems to have triggered it.

Anything medical that I can think of has been ruled out. Blood tests always fine. I had a pretty bad vitamin D deficiency but been on a high dose supplement for a long time now and my levels are fine. B12 fine. I was convinced it was my thyroid due to all my symptoms and have done several private tests which vary, but never out of range (I know normal range for thyroid is contentious - I had one private test where my TSH was 5.95, it has been as low as 1.4, but most of my private tests it’s about 3.8. Other levels in normal range including antibodies. Even if it is my thyroid it’s kind of irrelevant because no doctor in the U.K. will treat at the level I’m at - and all three times the GP has tested me in the last few years my TSH has been mid 1s and nothing else abnormal.

So maybe it is “just” CFS. What the fuck can I do about it?

Last time I saw a specialist about it was years ago. Has anything changed? I know other countries are trialling medications like stimulants or other things, is that happening here at all? Anything else I can ask for?

I cannot carry on like this. I honestly just want to lie down and never get up. Right now I’m too sick to care for my kids and my DH has to work - if he took time off every time I was sick he’d never be at work.

I will try anything at this point. Anything at all (within reason - I have a quite serious woo allergy after watching my mum get ripped off by so many charlatans in her final years).

I’m going to see the most sympathetic GP in my practice at the end of the month to beg for help. If anyone has any ideas for what I can ask for I’d be really grateful.

I had reasonable results from pacing but that’s no longer possible. I rest as much as I can whenever I can. I don’t know what else to do.

PrayingandHoping Tue 14-Jan-20 19:29:59

Had cfs since 2000. Went through 4 years of fertility treatment which thankfully resulted in my little girl last October

Some of the fertility treatments made me SO ill! (Especially clomid, I was collapsing on that). But one doctor said to me to try acupuncture and oh my word, it's amazing! I haven't felt this good in so so long! Like anything I expect there's good practitioners and not so good ones, but it's made a massive difference to me

I did go back to the GP when I was ill on clomid. A v nice sympathetic one, and no, nothings changed, it's still anti depressants, cbt and exercise.

SinkGirl Tue 14-Jan-20 20:17:41

I do think hormones are a big factor - in a lot of things actually. My CFS seemed to be triggered by a very powerful hormone treatment I was on and I’ve never been the same since.

How painful is acupuncture? I have a really awful needle phobia so it’s the last thing I want to do but if it helps I’ll try it.

PrayingandHoping Tue 14-Jan-20 20:29:32

Some points are v uncomfortable.... it's not the needle that hurts as they barely go in really, it's when they twiddle. But it does fade v quickly.

I personally would never call it relaxing.... I was planning to just go while I was having ivf to "tick the box", but when I suddenly felt just massively better (which I hadn't expected at all as it's not why I went) I decided to keep going. No, I don't enjoy it but it's worth it. It's made such a massive difference to me. If I was out for the day I used to have to constantly sit down, and that evening I'd be in agony and it would effect me for for days. Now I get none of that. None.

Chickerboom Tue 14-Jan-20 20:30:01

Bowen maybe?

thebowentechnique.com/what-is-the-bowen-technique/

TheDuvetQueen Tue 14-Jan-20 20:33:49

The Bowen technique was brilliant for
Someone I knew, so would definitely suggest trying that. I personally had a massage therapist who used draining techniques which helped enormously. 10 years later I still go every 3 months just to make sure I keep on top of it but have been better for years now, the massage techniques were life changing

Wheresthebiffer2 Tue 14-Jan-20 20:39:50

The Perrin Technique works for some people:
(massage techniques stimulate the lymphatic system)

But our hospital consultant doesn't believe in it - says lymphatic draining is not proven to do anything helpful.

however, it is the one thing that does seem to help DH. (in our experience over the past few years, lots of things help some people, some things help a few people, and some things that help, do so for a while, then stop helping. it is a very frustrating condition).

Wheresthebiffer2 Tue 14-Jan-20 20:43:18

Sinkgirl, pacing has been proven to be harmful to patients with CFS/ME.
There are campaigns (eg. ME Action. ME Society )to try to get the NICE guidelines changed - because the advise is flawed. It is highly controversial topic.

JasonPollack Tue 14-Jan-20 20:44:45

OK this is definately a bit woo but it worked for my mum who had tried most things by this point and isn't very woo herself. She had reiki therapy, from what I remember her saying the therapist got her to remember the time when the ME started and then healed her stress there? Can't hurt to try and it really worked for her, she was almost bed bound at points and she's fine now.

Dowser Tue 14-Jan-20 20:46:38

I had acupuncture in the point between my third and 4 th finger right hand
Ben so painful
Would not recommend
6 weeks later still getting a bit of pain
Order som concentrace from amazon.game changer
Take with coral calcium from Caribbean. Order from piping rock
Also liquid chlorophyll Also piping rock
Gel capsules for concentrace as it’s very salty..take cap after every meal
You might also need nascent iodine and ionic selenium

You may also have EBV

Elieza Tue 14-Jan-20 20:46:54

I’ve had acupuncture for fatigue for years. I credit this as the main reason I have been able to get off the sick and back to work. It’s not woo it’s had scientific studies for its use in various scenarios.

The practitioners are registered with the one professional body. Look in their website for a local acupuncturist. Don’t presume a Chinese man will be more experienced! Not necessarily so! I made that presumption but after going to him I found the Scottish woman I went to much better. I asked prior if she used thin needles and she said yes, so I was happy with that and made an appointment and go regularly now.

Also, stop eating rubbish. Healthy food really does increase my energy levels. It’s a vicious circle though as I’m generally too tired to cook! But I yet and be organised as I feel better eating home cooking.

The practitioner has a choice of styles and sizes of needles. The ones mine uses are very fine. It’s not like injections for the majority of the points. Mostly you don’t know the needles are in unless you choose to look! There is the odd jaggy one but there arent that many and it doesn’t last for like eight seconds the way an injection hurts. It’s a one second quick ouch moment. But there aren’t that many like that.

Moxa is my favourite treatment. The needles are warmed and you feel a lovely sense of relaxation and warmth. I get excited when she says that’s what I’m getting! You don’t get a choice. She decides based on your recent symptoms where you need needles.

Fatted Tue 14-Jan-20 20:48:11

You've probably had so many tests already, but what about your iron? You mentioned Vit D and B12. How is your diet in general?

Dowser Tue 14-Jan-20 20:48:29

Maybe some grief counselling around. Your disabled babies also

JMAngel1 Tue 14-Jan-20 20:48:49

Please look into DIM supplement - it will help/stop your adenomyosis/endometriosis.
Then for energy, try Ashwagandha - it supports your adrenal glands and brings my energy levels up so well but not in a manic way.
Avoid alcohol, sugar, dairy and white carbs.
Eat mostly veg and fruit and drink lots of water.
Avoid caffeine.

Dowser Tue 14-Jan-20 20:49:50

Needles in my back didn’t hurt at all..but the one in my hand..ouch

NewCatMummy Tue 14-Jan-20 20:56:58

I feel awful if my tsh is over 1, keep talking to the GP about your thyroid function- the Uk criteria are ridiculous compared to the rest of the world

BonnesVacances Tue 14-Jan-20 20:58:43

Wheresthebiffer Pacing isn't harmful. The results of the PACE trial were. I'm sure that's why the trial authors named it PACE to confuse an already confusing illness. hmm Pacing is what most people with ME do to manage their illness and is about the only realistic option available at the moment.

OutFoxxedByABadger Tue 14-Jan-20 21:01:18

Fatigue is just horrible, and I can't imagine dealing with that and two young twins with disabilities. flowers

I'm afraid that some "sensible woo" might be what's left available to you. Your biggest challenge might be getting in front of the right person.

I don't have ME but have had another similar condition which involves fatigue. I found a medical herbalist (evidence-based) and an ayuvedic dietician useful. I am already woo (reiki, tarot, life coaching type) but have an increasingly low tolerance for bullshit. For me, I could see that it definitely had a psychosomatic component (I was burnt out) and a physical pathogen trigger. As such, my approach to healing was (is) holistic.

ifeellikeanidiot Tue 14-Jan-20 21:10:20

Have you had your estrogen and testosterone levels checked recently? I crashed into an early menopause in early 30s. Huge fatigue. Went private in the end for treatment. It's taken 6 months of estrogen and testosterone therapy but i feel so very different. I've stopped sleeping my way through the weekends and can now walk up stairs without pain and stand up long enough to unload the dishwasher blush

PrayingandHoping Tue 14-Jan-20 21:24:21

Never had needles in my hand. Always In my feet and legs, in my wrist and near my elbow (the wrist is an anxiety point and the elbow is because I get heaviness symptoms there)

Agree with the advise of researching acupuncturists. I can't remember the site but I found mine on a site that had a list of registered acupuncturists in the uk (or something like that)

PrayingandHoping Tue 14-Jan-20 21:27:33

Pacing is also what has seen my through the last 20 years! It's not harmful. Before acupuncture its all I had. Knowing how to manage yourself is vital, and listening to your body on a day to day basis and accepting what it is telling u.

SinkGirl Tue 14-Jan-20 21:29:57

I had one blood test where my oestrogen level was below normal range. GP checked again at a different point in my cycle. I do think low oestrogen is a possibility - the treatment I was on that triggered it puts you into a temporary menopause. All other hormones are normal.

I am sure I would feel better on thyroid meds to be honest. But they won’t give them to me and I have been arguing the point for years now. It’s not going to happen. I know some people self medicate but would rather avoid that.

My iron is fine as is everything else except MCH is usually above normal range. No idea why. My diet is generally good.

Thanks for all your suggestions, will check them all out.

I believe it’s graded exercise therapy that’s controversial - pacing is just balancing active and rest periods. Not possible any more!

constantlyfuckingsleeping Tue 14-Jan-20 21:40:38

I've had CFS on and off since I had glandular fever when I was 22. I also also have a disabled child myself who has high care needs.
In theory my b12 is within normal limits, however I find that I am more 'with it' when I am taking high dose sublingual b12.
Despite being able to sleep 18 hours a day I also take melatonin at night- I find that my quality of sleep is better on it meaning I am more alert the next day.

Would it be possible to seek out a private opinion r.e. the thyroid levels?

tangledyarn Tue 14-Jan-20 21:53:10

Yes definitely dont confuse pacing and the pace trial! Also dont discount any psychological help, not for the treatment of the condition but to help with managing it, I have ME and a number of other chronic health problems and unsurprisingly it all can make me very anxious and depressed at times and some therapy, help with thinking about pacing and just time to talk about how shit it is does intermittently help me cope a bit better.

OutFoxxedByABadger Tue 14-Jan-20 22:40:41

I'm all for acupuncture and am a "super responder" but have found needles in my hand unbearable. My body pushed one out of my thumb by itself blush

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