Does anything work for chronic fatigue?

[SinkGirl]

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.

Have you been tested for Diabetes Op?

I've got two close family members with CFS, one with a "probably FM" rider. Both of them have been helped massively by careful amounts of daily exercise - not too much, but not too little. Lots of practical (ie tested by sufferers and found to help) stuff in this book of medical studies, which matched many of both of their situations and helped a lot: www.amazon.co.uk/gp/product/1905140282?tag=mumsnetforu03-21

Following ...

Watching with interest as a CFS sufferer with two kids who’s also exhausted everything my GP has to offer (and a private consultant... who gave me a work book with bloody colouring in pages).

Hi I’ve had ME for 12 yrs & can’t imagine having young twins. How old are they now?Do you have any family who could help during the day. I’ve had it since being pregnant with my youngest who was born with congenital hypothyroidism & has been on thyroid medication since 11days old. I know he feels off when his tsh is in the higher end of the UK range & it can be a battle to get them to increase his medication. I have tried acupuncture twice but unfortunately I reacted badly to it each time & have been advised not to have it again. I still feel guilty about what my youngest has missed out on. I’m sure when you are able you give your twins as much of your attention as you can, just try to realise that no one is perfect & they sound very lucky to have you. X

I have a fibromyalgia / chronic fatigue diagnosis.

I have also had endometriosis for decades - I had endometriosis surgery again last year and as part of that a hysterectomy due to adenomyosis.

This may be useful to you:
drchatterjee.com/what-chronic-illness-taught-me-with-nicola-singleton/

It is a follow up podcast from the TV series Doctor in the House with Dr Chatterjee who helped somebody with many chronic illnesses including ME, YouTube has the original episode.

There is a FB support group that the lady featured, Nicola, started called To Be a Better ME for people with ME, fibromyalgia, chronic fatigue who are looking for ways to recover.

I have just started taking MitoQ supplements to see if they help fatigue wise and I have just ordered seaweed capsules too (I already take various other supplements) and I am reading Dr Chatterjee's books.

Are you sure your iron is okay? My ferritin is always poor - I had an iron infusion last summer but it didn't seem to make a significant impact. One of the nurses said some patients need to return for further sessions.

Have you tried anti-histamines? I was really crap for a couple of years, then started to feel better but developed idiopathic anaphylaxia. Basically body reacting to nothing, showing either in fatigue (like flu illness) and then in extreme allergic reaction.

With hindsight I wonder if anti-histamines would've helped with the 2 year fatigue. Anything is worth a try.

And they'd help with the 'woo allergy'

ooops yes brain fog. of course pacing is good - it is the GET that is bad - the graded excercise . sorry for the confusion.

What is your ferritin level?

Just been looking back at my test results - last February is the last time I had my ferritin checked. It was 42.2 (13-150), but I’d also done a private test that included it the month before where it was 74.1 so maybe it’s up and down.

The twins are 3 now, we don’t have any family to help unfortunately. They go to nursery 3 mornings a week and at some point they’ll be starting specialist school (just waiting to find out when - September at the latest).

Antihistamines don’t seem to make any difference but I don’t take them consistently.

Definitely don’t have diabetes - hba1c is always good (low 4s) as are any finger pricks at the doctors, plus I’ve checked my own sugars a few times when I’ve been really unwell (DT2 has hypoglycaemia) and they’re fine, so doesn’t seem to be related.

Thanks for all the suggestions, will do some reading up when I’m feeling a bit better

Also my breasts are extremely painful right now- I’m only on day 16 of my cycle so should have at least 8-10 days before I start and this doesn’t usually happen until a few days before. Just said to DH that it feels so much like early pregnancy where I was so exhausted and sore that I couldn’t move, except I can’t possibly be pregnant (pretty sure sex is required for that).

So I’m back to thinking it’s my hormones.

Things I have found which help:

Chiropractor- doesn’t make it go away, but makes the pain less, and makes me less stiff and slow. Not cheap though.

Low carb diet- avoids blood sugar crashes

And this one is a little more risky, and tricky when you have children, but cannabis gets rid of pain, let’s me sleep properly at night, and stops the muscular spasms that I get, also allows me to have a social life, as it moves the point where my energy crashes so that I can get stuff done. Only use at night once kids are in bed or when I am out. I don’t know how that would work with your care responsibilities. Maybe try the cannabis oil stuff, won’t be as effective but might help?

I’ve tried CBD oil multiple times without success unfortunately.

Have tried all sorts of different diets over the years, nothing really helps.

I do have a shocking back issue which flares up (seems to be muscular) - GP has advised me to see a local chiropractor so going to see about that ASAP (got 10 appointments for the twins in the next two weeks so need to get all that out of the way first).

I just find it really hard to believe that it’s possible to feel this awful and for there not to be a cause that can be found. I’m not saying that ME and fibro don’t exist, I’m sure they do - I just feel like I’m in a trap where all the symptoms that fit those diagnoses are taken as confirmation of them, and anything that doesn’t fit is brushed off.

I’m pretty sure that ME and / or fibro isn’t the cause of my thinning hair or lack of sex drive or painful breasts or being constantly cold, gastric issues, awful skin etc etc.

I would happily pay to see someone privately if I thought it would help but I don’t know who. Even if my oestrogen level was low that once, or my thyroid results are at the upper end of normal range sometimes, finding a doctor willing to do anything at those levels seems impossible. There are some hormone clinics in London who mainly treat menopausal women - expensive but maybe that needs to be my next port of call.

So sorry to read this SinkGirl. You are doing amazingly well all things considered.

I have had CFS for 20 years or so, I am 70 this year. During my 40s I had frequent, heavy and excruciatingly painful periods, and eventually got so anaemic I agreed to have a hysterectomy. During this time I became allergic to one food after another, and even now have a very restricted diet of "safe" foods. I never regained any normal levels of energy, and just survive by pacing myself.

I saw a consultant endocrinologist a few years ago ago and although my thyroid results were borderline he thought I would benefit from a small dose of Levothyroxine. I have to say it has made no difference to my energy levels, but I don't know what I would be like without them. He advised upping my B12 (I take sublingual spray) and taking D3 supplements. This doctor is a great believer in sunshine, and recommends taking holidays in the sunshine a few times a year. He recommends a SAD lamp in winter. Incidentally he thinks the CFS is from being in contact with Glandular Fever.

( I have not been on holiday for years, though. Even going to the supermarket wipes me out for days!)

If I get overtired I also get very painful IBS. I think my body hates me!

Following with interest as DD has CFS. She is at university and getting a lot of support from disability services thank goodness.

I will look into acupuncture for her.

I think my body hates me!

Absolutely agree, I feel the same way! So sorry you’ve had such a bad time.

I take b12 (spray) and vit D with K2 every day. My vitamin D was 19.9 when first tested and was 94 last time so could still be better but certainly much better than it was.

Just been on a forum where a lot of people self medicate with NDT (basically pig thyroid gland) because doctors can’t / won’t help them. It seems like a very drastic step to me especially as it means ordering the stuff online and really having no idea what’s in it. But I understand why people do it because I can’t carry on like this. Will beg the doctor for help again in a couple of weeks and see what he says.

My bowels were awful due to the endo but had adhesions removed and it made a big difference. Now get very painful wind and a sort of bruised / swollen feeling so may be some adhesions again from the endo / c section.

Gynae has offered me a hysterectomy but I’m honestly wary of anything that might mess with my hormones even more (they would leave my ovaries but I know that some women report awful hormonal issues from just tubal ligation and they’re not listened to at all, so yeah... no good options really).

I might go back on the combined pill as a last ditch attempt, last time was a disaster but then I found out about the pill ladder (after 20 years of using the pill) - I was on one of the most progesterone dominant pills and progesterone really messes with me. Might try one of the more oestrogen dominant pills with a less androgenic progesterone and see if that helps, which it might if my oestrogen is low. But higher oestrogen means more endo most likely. Can’t really win.

I’m just so sick of this to be honest. I just want to live my life properly, not be losing entire weeks to being so unwell.

Take - selenium, high vit D -40000 iu, zinc, reduce stress, do ketogenic.

Have you been tested for food allergies?

I would also recommend testing for Lyme disease. I have a good friend with a very similar history to yours. If your GP is sceptical there are private tests.

Cut out sugars as much as possible too, v important.

Hair loss is to do with ferritin, there's this article here and I recall reading somewhere a trichologist said that to get hair regrowth you want to have ferritin in the region of 100, a number I've never managed personally:
www.philipkingsley.co.uk/clinics/from-the-clinic/ferritin-and-hair-health

Wrt painful wind - have you tried either drops of peppermint oil taken in warm water or charcoal tablets?

I had an emergency c/s which resulted in a lot of trapped wind. Even though on oramorph for pain, wind caused me most grief. The peppermint oil soothed it really well. You can also get capsules of peppermint oil.

I think I have read all your posts on here but not all the replies so sorry if I repeat anything or have missed something (in a bit of a rush). Have you ever had your magnesium levels tested?

I had ME/Fatigue/Glandular fever (different people said different things) for years. Then someone suggested magnesium and it made such a difference. My levels were so incredibly low. I just don't seem to absorb it. I don't take tablets now as I have inflammatory bowel disease but I am quite stable using the magnesium body sprays. Worth looking into if it hasn't been investigated yet.

Also thyroid levels can vary greatly I gather over a short period of time and it is notoriously hard to diagnose. I have always been at the very very low end but like you say no Dr will do anything with levels which are in the normal range (even if they are right on the bottom number of it) so that doesn't help.

Also having food/digestion issues myself I would definitely say if you don't already then find a really plain, simple, natural diet. As few prepared things as possible (hahahaha with twins! don't blame you if you eat ready meals constantly, chances of having energy to cook everything all the time are small but you know what I mean). So go back to basics, veg, meat/fish, potatoes/rice/pasta, fruit, eggs, nuts basically. Although boring get rid of a lot of sauces unless you make them from scratch as they usually contain an awful lot of additives etc. My general meals are various roasts or casseroles, just bung them in the oven and leave them to it. jacket potatoes, very simple stuff. Try Marigold yeast free stock instead of gravy. yeast can also be a problem and cause tiredness. I realise it will be very hard to do in your current situation but if you can then it might really help. I notice the difference if I eat something processed, a day or so later I will just crash. I cut out processed meats too like ham or bacon etc

nonickname that is an excellent point about magnesium. I do remember a few spells when my fatigue was so bad that my whole body would twitch/jerk. It was usually the signal that I had pushed myself too far. I looked into deficiencies and started using magnesium spray (homemade, cheap as chips) It really does work.