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.

I'm sorry OP that you are in such a tough situation.

I don't have CFS, my DH does, was diagnosed nearly 5 years ago shortly after our first DC was born. He suddenly became very ill after redundancy combined with stress of starting a new job and becoming a parent. He has been referred (twice) to CFS clinics and is currently about to re-embark on various treatments mostly focussed on CBT. The only things that seem to have made a real difference to his quality of life have been understanding the main triggers of flare ups (stress mainly) and paring back our lives to doing as little as we can. He works, and I'm a SAHM which sounds contradictory but I don't work so I can take on the bulk of sorting our home, cooking, cleaning, the children and all the other life stuff, so when he stops work all he has to do is help get the children to bed, eat and sleep. He does do his fair share in other ways when he's well enough but it has eased the pressure and stress of juggling childcare, housework etc . It's pretty shit because when he has a flare up he can be in a lot of pain, and finds even low level daylight hurts his eyes. We don't have a very busy life - I'm sure a lot people think we're lazy / boring but it's depressing how quickly people forget DH is living with a debilitating chronic illness because he looks "normal".

I think the diagnosis by exclusion does make it hard. It's possible that the horrible combination of multiple illnesses has resulted in your having such severe symptoms. But in many ways what you describe reminds me of my mum, who has a huge tranche of auto-immune diseases which have taken years for each to be diagnosed and she still struggles with getting the right treatment for her thyroid.

Have you tried D-ribose, op?

I have fibromyalgia and suffer chronic tiredness. It has completely taken over my life, changing the duvet cover leaves me worn out, sweaty and completely wiped out. Also struggle climbing the stairs.I have tried everything the doctor and specialist recommended but it only seems to be getting worse. Like you everything is put down to fibro. The rheumatologist has recently put me on Low dose naltrexolene, she said it would help with the exhaustion, pain and brain fog. I can't say if it's working yet as only being on it a few weeks. Waiting now to see a physio.
By the time my kids leave in the morning I'm wrecked so I can't imagine how you are doing it with 3 year old twins!! To be honest I would rather be diagnosed with anything other then fibro,
not only do I find its sometimes dismissed by professionals but also I'm worried that this is the way I'll be forever because there so little understanding of it. My hair falls out a lot also but I found it improved once I started on high doses of vitamin d. It's so bloody hard, the pain is awful but the complete exhaustion is the worse, I feel like a 90 year old. I can't imagine how you're doing it op with two young kids.

Thanks so much everyone, I really appreciate you taking the time.

I will ask about a Lyme disease test and follow up myself if they won’t do it.

Looking at my spreadsheet of test results (yes really 😬) I haven’t had my magnesium levels checked. I do take a supplement alongside my vitamin D but will try more maybe. Will do some research.

Wouldn’t be surprised if there’s an iron issue due to heavy periods. I took ferrous sulphate when I was pregnant and it ruined my bowels so will see if there’s another option.

The GP I had been seeing told me to stop doing private tests as she believed they were causing health anxiety. She didn’t seem to understand that feeling like death and not knowing why is what’s making me anxious. I definitely don’t have health anxiety - I never worry it’s anything serious (I’m sure that would be clear by now if it were).

Yes, peppermint oil capsules are great and I take them when things are bad

I have anaphylaxis to tree nuts and sesame but don’t seem to react to anything else. At one point I tried eating lots of gluten as apparently low gluten can mask thyroid antibodies but it made no difference to the results or to my health. I don’t each much gluten now. Generally we eat quite well but not always obviously. No real change recently. I have very little sugar - don’t each chocolate, cake etc. Been tested for coeliac and that was fine. Inflammatory markers normal.

I need to keep a symptom / food diary again and see if I can link anything.

The GP I’m seeing in a couple of weeks decided I have fibro a couple of years ago. I asked him to refer me to a rheumatologist which he did but the rheumatologist refused to see me because the GP had already diagnosed fibro and then couldn’t do anything about it. I’m sorry you’re in a similar boat, it’s absolutely brutal.

In my experience, GPs and the general "traditional" medical establishment didn't understand at all when I was ill - they generally thought it was all in my head, or exaggerated.

I did reverse therapy with John eaton and it worked - I'm not totally better, but much much better than before. I'm always a bit nervous about specific recommendations as everyone is different, but it worked for me thankfully.

Good luck, I hope you find your answers, it's a horrible horrible thing to go through, especially the way the medical establishment make you feel.

Not read full thread. I know three people for whom the Lightning Process worked. I saw my housemate go from lying in bed every day for months to going shopping for a whole afternoon on the second day of the course. I know a lot of people are cynical about it but I have seen it work first hand for three people I know. It isn't cheap but from what I can tell well worth the money.

It would obviously depend entirely on the underlying cause of the chronic fatigue and unless LP know what this is, they're just as bad as the medical profession who prescribe graded exercise.

I don't underestimate the mental power of standing on a positive circle on the floor, but I fail to see how it could reverse the effects of a broken energy system and avoid the physical deterioration following too much activity, which is the underlying issue in very many people with CFS.

So sorry you're having a rough time OP. I had ME/CFS for 13 years and recovered fully a couple of years ago. I tried a lot of different things but the main things that helped was nutritional and functional testing to get to the root physical causes which for me were, allergies, a parasite and underlying infection.
I followed Dr Myhill's programme for a while which was intense but really worked. I don't think she takes on patients anymore though. I then moved to the Optimum Health Clinic and worked with them remotely (they're in London and I'm in Yorkshire) as well as their psychological program which was amazing. I was mostly recovered by this point and then I had my son and regained the rest of my health during pregnancy. It was a very long and difficult and expensive journey but it is possible to get well so keep the faith if you can xx

Sinkgirl I remember your story. Do you follow Phoenix Rising? They do excellent write-ups of all the recent research, including those that are hypothesising about underlying disease mechanisms.

Have you had tests for POTS and Ehler's Danlos? These can be confused with ME/CFS.

If you've been diagnosed with fibro have you tried any of the drug treatments, for example pregabalin? In my area there's a chronic pain clinic that has really helped our family - (it's not me who is ill, but a family member). These combine drug therapy with psychological coping skills to live the best possible life with these restrictions.

Have you been able to identify any triggers for fatigue? My family member gets overstimulated quickly. They find it easier to work than do childcare and work for themselves to manage their own energy levels. I appreciate that might not be possible for everyone.

Hopefully things should be a bit easier when your twins go off to school? Sending you massive hugs as these conditions are so debilitating and nobody really understands what fatogue (rather than tiredness) is like.

@Voila212 my family member has been asking for LDN from the Dr with no success. They are so reluctant to prescribe it off-label. I'd be really interested to hear if you find any benefit from it.

Mine lessened over time and as my DCs got older. I honestly have no idea how that happened as I didn't change anything.

I now work part time after not working for years and I can exercise. The more exercise I was doing, the fitter I was getting. I have also found diet plays a part. My diet wasn't great. Carbs seem to be bad for me and protein makes me feel much better.

I've got a fairly busy life at the moment (for someone with CFS) and I have been struggling a bit lately on and off but I've noticed when I have time off work and sit around more, I feel worse. Having a routine and doing a certain amount keeps me going and able to do more. But this has taken years.

My MH has also improved a lot, which I do wonder if was the trigger for feeling a bit better. The more it improves, then definitely the better I have felt. I would never have believed it a few years ago.

@SleepDeprivedElf beat me to it. You sound like me and I have hEDS, PoTS, fibro and an autoimmune disease. It all started during pregnancy and the autoimmune disease began when DS was 4 months old, and it was caused by hormones in pregnancy. DS is a toddler with various chronic health issues of his own so I can only imagine how hard it is with two of you.

I'll try to find the latest hEDS criteria for you when DS is in bed.

Sorry everyone, my brain is not working properly so I may have to come back to this thread and look everything up when I’m more with it.

It’s impossible to explain what it’s like to people. The only way I can describe how I feel right now is like I’ve been drugged or poisoned.

I’ve looked at the criteria for hEDS before and I don’t think it fits.

Have tried pregabalin and gabapentin, as well as amitriptylene - nothing helped much, most made my fatigue much worse. I’m pretty sure I don’t have fibro - they diagnosed me because I have neuropathy in my legs and arms but overall it doesn’t make sense to me.

Will look at all your suggestions and see what I can try.

TeaAndStrumpets Same age and duration for me, I also had extremely heavy periods which I was told was due to a late menopause after I asked if CFS/ME/Fibro had any connection/involvement.

SinkGirl and others who have young children, my heart goes out to you as there is no way I could cope with babies and/or small children. I'm hard pressed to look after myself these days.

One local GP said the usual stuff that I'm sure you've all been told at various times..that there is no such thing as CFS/ME/Fibro/IBS and the reason I'm so tired/no energy/pain/etc is due to 'all the takeaways and alcohol'. I've never been a big alcohol drinker but at that time hadn't had any for several years...also, I make all my own meals and maybe buy one pizza per year, if that. Needless to say I didn't return to see her.

I've had a flareup in recent weeks, new neighbour next door with TWO barking dogs 24/7. Catchup sleep during the day is not the same as a good night's sleep.

In the early days of CFS/etc one GP diagnosed Lyme disease but this was without blood tests, which at the time, could only be done in the USA, cost several hundred dollars and not something I could afford. Then I discovered he was studying Lyme and similar illnesses and needed someone to study....dodged that bullet! He's since been struck off the medical register so that told me heaps about his 'diagnosis'. Hope you get results for LD and get some satisfaction.

WindyRose interesting about "late menopause". I was still menstruating at 50, I'd been hanging on hoping the periods would stop of their own accord but they just got worse. Maybe it's as bad as having an early menopause but in different ways? I was glad of a hysterectomy but I never felt properly well again.

Have you looked into mitochondrial disease Sinkgirl?

No, never considered mitochondrial disease - will look it up. If it is Lyme I have no clue where I would have got it, although I think there are Lyme causing tics where I live (south west) I don’t tend to go into the woods!

In the back of my mind I wonder whether there’s something rare and complex going on that I’ve passed down to my kids - DT2 is having huge numbers of investigations for very rare conditions because he was born with an extremely rare condition and has since been diagnosed with another so they’re looking for links. The sort of tests you’ve never heard of - in fact the most recent blood test ordered by the geneticist, the paediatrician had never heard of. Something like electric transferrance of ferritin? I’ve forgotten now! Now being tested for MPS. I wonder if they’ll find something that may shed more light on things for both of us - mainly I just want to know what’s wrong with him, but if it leads to more info for me then that would be an unexpected bonus.

Right, they’re at nursery for the morning so I’m going back to bed for a sleep!

Have you been checked for IST or POTs. Inappropriate sinus tachycardia so your heart beating faster than it should be. Unlikely but often gets missed as chronic fatigue.

I had similar issues as you, including endo and adenomyosis (I had a hysterectomy).
I was eventually diagnosised with Lupus, could you maybe see a rheumatologist again?
A lot of auto immune diseases are very similar.

My 20 year old DD has very severe CFS/ME and has been entirely bed bound since September 2013. She has had end,ltests and many many hospital stays, NG feeding, acupuncture, reiki, hypnosis, antidepressants, lidocaine infusions, high dose melatonin etc etc. She's currently fast asleep as she has been for 3 days pretty much except to wake when in agonising pain. She has had 5 specialists all of whom have been kind and tried to help but to no avail. I have no idea how she copes. Her life has basically halted. Mine too as I cannot leave her alone ( she has POTs and if she moves she can faint and fall out of bed) ( also EhLer Danlos).

Just keep trying. I believe some people have good days ( DD doesn't) so make the most of those.

Dr Myhill has a book but she doesn't take any new patients and has closed her waiting list, no good for DD anyway as she cannot leave her bed except in an ambulance to go to hospital. The book is good but you need exact blood results to know which supplements might be helpful.

NICE is reviewing the guidelines at present ( due next year) and hopefully they will stop saying CBT and GET and offer more effective suggestions that might help more people cope.

Have you been in touch with ME association who have very useful information

TeaAndStrumpets...sorry for the slow reply, been having one of 'those' days but know you'll understand.

MP for me came at 52yo but in those last 5-6 yrs, periods were out of control with three cycles in 28 days, month after month, so I was totally washed out not to mention horrific flooding which kept me house and/or bed-bound for days on end, then maybe miss a month or two, then rinse and repeat all over again. I couldn't leave the house due to the flooding, so the GP didn't realise how bad things were.

After several failed attempts (due to heavy bleeding) I had a D&C and if that didn't help then a hysterectomy was next, but the D&C did the trick with no further periods. However due to another illness I ended up with CFS/ME/Fibro a few months later and have often wondered if there was a connection.

Sorry your hysterectomy didn't help......life sucks at times, doesn't it?

WindyRose also I think it gets so debilitating , normal brain function just ceases! I was dragging myself around in survival mode, and not complaining loudly enough. If one of my daughters suffered like that I'd be funding a private consultation PDQ!

Thanks for the lovely !

BTWI am sadly allergic to but hope you can enjoy some!

POTS: A Little Known Cause of Extreme Fatigue

www.hopkinsmedicine.org/health/conditions-and-diseases/pots-a-little-known-cause-of-extreme-fatigue

Google POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME.

Look this up. Some people who've been told they have CF actually have this.

Have you been tested for sleep apnea too?

Another HUGE, huge thing, b12 injections.

Some doctors are now saying people under 500 need to be treated if they have symptoms. In some countries they inject under 500.

AND the problem with b12 tests is that can be VERY inaccurate. Low vitamin B12 levels can be measured as false normal or false high
Your number could be 600 but your active b12 could be extremely low. There's also functional b12 deficiency, assay error and more. Do not believe the number you see on your test results for b12 if you have symptoms.

Watch this The serum B12 test is still widely used as thé test to confirm or rule out a vitamin B12 deficiency. However, a normal blood value cannot rule out a B12 deficiency, as has often been shown in scientific medical literature. Serum B12 can be false normal or even false high, while a deficiency is present.

You can read this

stichtingb12tekort.nl/english/misconceptions-about-a-b12-deficiency/

You can have PERNICIOUS aneamia?

I have a friend who used a spray but it was when she got b12 injections her symptoms improved SOOOOOOO MUCH.
Beauty clinics do them, you can do some googling, just make sure they are trained and stuff.

Aesthetics of Essex is an amazing clinic, it's where she got it done.

I know someone who was told he had MS, his b12 level was like 400 I think. His did 6 injections, his symptoms also began improving SOOOO MUCH. He felt soooo much better after them.

After googling Haemochromatosis can cause fatigue too.

Trying to go gluten free is another tip. Something that increased my cousin's energy levels. She didn't have coeliac disease but felt wonderful without gluten.

A sugar free, refined carb diet is worth a try.

I really hope you feel better. If what I recommended here doesn't help, I hope you find something that does.

@SleepDeprivedElf

Have you looked into mitochondrial disease Sinkgirl?

The problem with people looking up this disease is google will throw out the worst results.

Usually childhood mitochondrial diseases.

Mito is a metabolic disease, the main problem being the body cannot convert food into energy, this means it can affect any organ of the body, muscles are often affected.
The disease is often hereditary and the range of illness can be very different even within one family, it could be very severe or very mild.

It is tested for genetically but unless you have a major organ involved they do not routinely test for it.

Not many people are aware of this disease but it does cause terrible fatigue. Mito does not show up on normal tests and even many gp's have little understanding of it.

There is a Mito week in september where they light up famous landmarks in green to promote awareness. There is no cure for Mito, some patients take a Mito cocktail for energy and they avoid foods so as to avoid lactic acidosis in their muscles.

Have alook on the various Mito sites, many peeople with CFS and ME have been misdiagnosed in the past and were found out to be having this gene change.

There is begining to be more awareness of it and there are so many different types of mitochondrial disease.

@Sooverthemill
Has you daughter ever had genetic tests ?