To ask for experience and advice on CFS / ME?

[Amini]

Not really an AIBU, well perhaps I'm BU for posting here but I'm beyond fed up now

Forever had a low immune system, glandular fever in my teens followed by ten or so years of adequate health but prone to tonsilitis and viruses.

Battled septicemia (sp?) this year and lived to tell the tale but it feels like my immune system has all but given up. Two blood transfusions.

Back to back bugs, colds and infections since then with barely a week between each. I can't function. If I get to the shops twice in a week it's considered an achievement.

Currently down with god knows what for the past 5 weeks. Symptoms are sharp tingly throat and ear on one side - connected, swollen gland, extreme fatigue and lethargy, fuzzy head, periodic abdominal pain and the occasional runs. Inability to function normally. I pushed myself to go and have my bloods taken yesterday and did some light housework but I'm paying for it today and haven't been able to leave my bed bar toilet trips.

Doctor initially suspected a throat infection after phone consultation and perscribed AB's but 5 days of amoxicillin haven't touched it and I dare say I feel worse.

Waiting on blood test results but can't get an appointment to go over them until next week. Last blood test was 4 months prior and came back ok other than elevated wbc which I think was in line with the constant bugs. Admittedly, I haven't bugged the doctor as much as I should have as everybody kept telling me that I'm "bound to have a low immunity" after septicemia and it "will improve" so ive just plodded on and accepted the cards I was dealt.

Have done some of my own research, obviously I'm no doctor but something that keeps coming up is CFS/ME

Does anybody have any experience of the condition and can tell me whether they think it's possible or any idea what I should be doing if it is?

I've had enough. I've got two young children, youngest of which is still a baby, they need me but my life has become a never ending cycle of illness and being confined to the bed or sofa. I'm becoming really depressed and I dare say life doesn't feel worth living at the moment

I also meant to recommend you look into sleep apnea.

It's most likely all related; mental stress can create physical stress, a weaker immune system is then less able to fight off infection and your body becomes less able to function as you're used to.

I'm a complete layman of course with no professional experience, only personal experience, but I feel this sort-of-thinking explained my illness; I suffered an awful childhood and sexual assault, and in the aftermath of coping I contracted an awful flu virus, then glandular fever, then shingles - all within 12 months.

My body was like 'nah, I'm done, thanks very much'.

I had to address the mental health side of things as well as the physical, so in tandem working with both I became stronger and more able to deal with the world - and for me it took 7 years to get there.

If it is post-viral fatigue/ME/CFS, trust your gut, OP, you WILL get better. You've most likely been through a great deal, be kind to yourself.

Also, you mentioned at least worst case scenario with M.E it can be managed or improved.

Not at all, sadly. People die from M.E. Some people indeed do improve, some even completely recover. But a lot never do, a lot get worse over time even with pacing, and some deteriorate to the point it can kill. Not wanting to frighten you, and the % of people who pass to this horrible illness is extremely low, but it a risk. I think there's a lot of tests for you to have yet, and urge you to do so, so that whatever the results, you can get on with treating or managing it asap. X

I had similar symptoms of extreme fatigue hair loss etc, I would ask for your thyroid antibodies to be checked , although my GP suggested CFS turned out I had Hashimotos an auto immune disease. I would look at the web sites Health unlocked thyroid disease or TPA UK. The

I didn't expect so many replies on AIBU, so thank you so much!

All suggestions taken on board and I'll be pushing for more in-depth tests IRT thyroid, deficiencies etc. If my blood results don't show anything this time. I'm a little bit nervous about getting the results, after being ill for so long I've half convinced myself I'm on my way out. I realise that sounds irrational.

CFS/ME sounds absolutely horrible so I'm keeping everything crossed that it isn't that, it's still very early days isn't it so perhaps I shouldn't be worrying about that yet.

I have Fibromyalgia & ME/CFS, was diagnosed with the fibromyalgia in 2004 after the horrific birth of my son & nearly dying, was diagnosed with CFS/ME IN 2013. Mental health has a massive part to play in both diseases, I know if I get stressed, anxious or my depression gets worse than normal ( I have severe depression & am autistic) my energy levels hit zero & I am in bed often for weeks. A simple cold or infection can knock me out for ages after the symptoms have cleared, I started with conjunctivitis last week & my energy is zero, all I want to do is sleep, my legs are like jelly, no concentration, i am hibernating at the moment, I can't even read a book, it has taken me over half an hour to type this. To get diagnosed, usually all the blood results come back clear, the only ones of mine that show anything are my B12 being low & my thyroid is borderline low, I have B12 injections every 12 weeks & other than that I survive on painkillers, antidepressants & CBD oil.

Thank you Nat, for taking the time to respond. I'm sorry you're having a shit time of it with your health.

I almost lost my life too during the birth of my daughter this year, similarly that is when all of this began. It feels as though I've not had a period of even mediocre health since, it's coming up 7 months now.

IRT mental health being a factor, I also have problems in that area. I've been diagnosed with PTSD (in part due to the birth) and suffer with terrible anxiety.

My heart goes out to everybody else who has or still is dealing with poor health. I realise now how much it is taken for granted, in my case.

All I want to do is to be able to enjoy life again

Do think about taking good gut bacteria as well, OP. Antibiotics knock the good bacteria out of your system as well as the bad.

Sauerkraut is the easiest to make at home even if you have serious fatigue, it's just cabbage leaves and salt in an airtight jar. Do look for proper recipes. Or you can buy it, Waitrose sell an active one, just be aware some sauerkraut is just a condiment, not active.

Barley Miso Paste is also fermented and active.

Kefir - I've tried a few brands and some taste more active than others, they 'tingle' on your tongue. Some are cultured in milk, others in water.

Live yogurt contains some cultures.

Natto is said to be very good, for me it's an acquired taste I've not acquired yet.

There are probably more fermented foods, those are all fairly easily available.

My relative has serious fatigue, has had for years, she tries to have at least one fermented food each day and has found taking BetterYou VitD 3,000IU in a spray, plus Aldi's own make multivitamin and mineral supplement daily hasn't made the fatigue go away, but somehow that combination of things has in her words 'made me feel like myself' so she finds it easier to deal with.

Another thing you can look into is Spoons Theory. I've been so long typing this I expect someone's already suggested it whilst I wasn't looking. butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Thank you for the suggestions, I'll make a point of getting some of those

I'll be honest, my diet isn't fantastic. I tend to go for quick and easy as opposed to healthy.

I've been drinking yakult for a few weeks in the hopes of replacing the good bacteria that was wiped out with all the antibiotics, but now I'm on more of them the good bacteria will be getting eradicated again.

I wish I hadn't been perscribed more AB's for that reason alone, as I'm pretty sure that after 5 days of them, the throat problem isn't bacterial and they just add to feeling crappy.

Gonna look at the link now! Really appreciate the replies

My cousin had ME, she works now. She recommended broad based Digestive Enzymes. I was feeling rubbish (I have a rare disease), took one for a few days and the improvement was massive.

Second vote for Kefir. Also, low FODMAP and low wheat (e.g. one slice of toast a day), low dairy (20g in a portion) made a massive difference to me. The sore throat could be caused by acid reflux.

Thank you penguin I've added your suggestions to a list I've drawn up, I'm going to order some things today.

I've managed to get an appointment at my doctors for this afternoon as somebody else has cancelled, quite nervous about my blood test results but I'm a worrier anyway.

Hopefully it goes ok

Lots of autoimmune diseases can cause similar symptoms, I thought I had ME in my early 20s and it turned out to be lupus. There was a recent study linking Epstein Barr Virus (glandular fever) to triggering lupus. I always wondered it there was a link as I was never ill as a child nor prone to infections. However I did have EBV at some point as I had an antibody test during pregnancy.

In my case I didn't have any inflammatory or rheumatic markers in my blood (the standard first line test) so diagnosis was missed for a long time, but it turned out I had an off-the-charts level of lupus antibodies which was making me feel so ill.

Another vote for getting tested for deficiencies!
Full iron panel: your ferritin (iron stores) should ideally be 70-100.
Vitamin D: get your exact levels as 'normal' NHS range is woefully behind the latest research. Ideal range is 150 to 200nmol. If you do supplement you need adequate elemental magnesium to direct the D to the right places. Boron is a good addition too. There's an excellent vitD Facebook forum that details a D protocol, based on current research.
B12: the NHS don't seem to do the test that measures your actual b12 ( I cant recall which one it is), they tend to measure circulating which can give a false impression of your actual levels. So you can essentially have low B12 (including pernicious anaemia) and they'd not diagnose you.

I was diagnosed with ME in my late teens (late 40s now) and I do wish I'd known about the above then, especially vitamin D & ferritin. I suspect that was the problem. However a gluten-free diet really helped. Anything immune boosting, including a good diet and probiotics, would generally help too.

I hope you get back to full health OP - don't despair! It could be an easier fix than you imagine.

Thank you ladies

Just waiting to be seen by the doctor now, full of anxiety

I'll update once I've been seen

Forgot to mention I did have anaemia after DDs birth this year, I hemmorhaged badly and had to have a blood transfusion and then iron tablets. Apparently my levels had gone back up before I left the hospital (I was in for two weeks) so once I left I was no longer considered anemic.

Once my periods returned 10 weeks later they were heavier than I'm used to, so maybe iron is low again?

Another thing to ask is is they are testing for coeliac.

Hi OP

I have CFS. I had loads of tests a few years ago. Thyroid etc neurologists, heart issues. I have a poor immune system too however it's not as bad as yours, I think sometimes people can get into a rut of being so wiped out by a major illness they do get one thing after the other so it could just be that (eg after flu people seem to have a few months of illnesses).

Things I'd do -

Go to the doctors and get tested for absolutely everything. When that's exhausted asked to be referred to CFS / fatigue clinic in your area. CBT can be helpful for some people but not others.

Do a mindful guided meditation before you go to sleep. Do some apps and eventually you will find one you prefer and can do it by yourself. This will help make your sleep more restorative (one of the symptoms of CFS is v poor quality sleep)

Take vitamin D, B12 and evening primrose oil. All things with some link to improving symptoms

Get a cleaner. Ask for help. Let some stuff slide. Basically outsource all thr shit boring parts of your life as much as you can afford to, so that you can use your limited energy for important and fun things like playing with your children

I found acupuncture helped improve some of my symptoms though it's expensive- because acupuncture tires you out you need someone who really understands CFS and who will treat you little and often eg 2 half hour rather than one hour treatment

I also have a tendency towards anaemia (a small drop in iron has a disproportionately large effect on my energy levels) so periodically take spatone as it's more gentle than iron tablets

Hello OP, hope the GP is being helpful!

You asked about pacing, earlier. Pacing is about breaking jobs down into small manageable bites, that don't leave you exhausted. Instead of going boom on a day when you don't feel so bad, then feel bust the next, you only ever do a little at a time. What that looks like is different for everyone! For me it means prepping the dinner, having a little rest. Cooking the dinner, having a little rest. I can't get anything done in one go, but I can do ten minutes in the garden, ten minutes on the computer etc.

You will end up going back and forth as they do a process of elimination. I had to get iron levels up, thyroxine levels up, Vit D levels up... I did HRT (age 50). I still felt rubbish. That's when Fibro was mentioned.

It needn't be a life sentence, but it will need a lifestyle change.

You need to look after yourself physically, mentally, and practically until you start to feel better.

Diet wise, I'd add things in before you take them out!
Live foods, kefir, yogurt, mouldy cheese, raw honey etc. I'm making some fermented drinks like ginger beer and a Russian lemon one, as I dislike yogurt and kefir!

Hi all,

Bloods all fine apart from elevated lymphocytes which are in line with having an infection. My antibiotics have been changed as she could see white patches on my throat and my ear has inflammation. Doctor said she doesn't know why I was perscribed amoxicillin in the first place as it's not the right one for this type of thing.

IRT general health, she's ordered another load of bloods specifically to check for deficiencies such as iron, folate b12 and vit d.

Feeling reassured that everything is being looked into.

I can report that my thyroid is ok as I now know that is one of the things that was checked in my last lot of bloods.

That sounds positive! I'm afraid it's a slow process of proactively looking after yourself until GP find something/you feel better!

I've got ME/CFS, diagnosed after everything else imaginable was ruled out.
It's far shitter than the name would suggest, not just tired, it affects everything in my life.
Fatigue has turned me from someone who would speed walk up hills to someone who needs a lie down after loading the dishwasher. Brain fog has turned me from an erudite, intelligent woman to a blithering imbecile at times. My hands go stupid when I crash, and sometimes my legs and back hurt so much I just lie down and whimper "owwww". I'm 40 and am seriously considering getting a walking stick so I can walk to the shops. I've had constant tinnitus for over a year, and am sensitive to bright light and loud sounds. And I only have mild ME/CFS.
OP, I really hope you have something else, something fixable.

Great that you're getting all your bloods done, OP. Make sure you get the actual figures and do your own research. Even the low end of 'normal' ranges can be problematic for some, and as mentioned, NHS guidelines for ranges aren't always in line with current research and even anecdotal evidence. If you were anaemic that means your iron stores (ferritin) were completely depleted (so no or negligible circulating iron). It's very possible that while your circulating iron has improved to a normal range, your stores are still very low and that can most definitely cause similar symptoms to full blown anaemia (including hair loss, fatigue etc etc). Fingers Xed you get some answers!

Thank you all, you've contributed to easing my worries about CFS/ME a bit.

I'm going to put it out of my mind until absolutely every test that can be done, has been done. There has been no suggestion from the doctors that it could be yet, it's just my worrying after doing my own digging.

I really feel for all of you who have had to struggle for years with the horrible disease.

I'm going to go for my second lot of bloods on Monday and I'll be sure to take away a print off from the results so I can look into it properly. I'll post here once I have them, if that's ok.

I'm not clued up IRT optimal levels and what not.

In the mean time hopefully these AB's work and get rid of this bloody nuisance thing.