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

If your D is running low @Amini, the Facebook group is Vitamin D & Co factors UK. There's a lot of folk on there who have your symptoms and will be able to advise on any B12 issues too. Coincidentally, a query on the group page about CFS/ME and a vitamin D protocol has literally just appeared on my timeline and a few folk have mentioned D, magnesium and B12 supplementation being a game changer for them.
X

Thank you Ellen, I'll head on over to the group now and have a read

I was diagnosed with ME 30 years ago after 2 years of agony and tests for everything going. I was 13 when I was diagnosed. ME does still affect my life BUT I can manage it. I have 2 DC and from the word go, I got them into a pattern of having a long afternoon nap so that I could have one too. A good friend of mine introduced me to ‘spoon theory’ which describes it perfectly (en.m.wikipedia.org/wiki/Spoon_theory) I find it really helps me to explain to friends how I feel every day.

Blondie you are so right, it can be managed with care. I discovered the spoons theory after years of trial and error, it was a real lightbulb moment to see it written down.

I had my family before I developed CFS, and I really admire anyone coping with small children at the same time. You have done really well!

Most of the time I live my life as best I can, but I do miss being meeting new people. My husband has a hobby that involves foreign travel, all the other partners tag along . I'm sure people think I'm really antisocial not going with him, but that is how it is

I prefer phone theory, people understand it better because phones.
Living with ME/CFS is like being a phone with a dodgy charging cable and battery.
You can leave it on charge (rest/sleep) as long as you like, but it only might charge, and is rarely fully charged. Using lots of apps wears the battery out quickly so the only way to keep charge through the day is to keep tight control of what's running.

That's why I can only go out in the evening if I have rested all day, and why I have to choose between making dinner and going to the shop. I don't have the "charge" to do both.

I think that is also good. I often say I feel my battery is flat. It's so important not to totally drain it, then it takes days or weeks to recharge.

There is a condition called Sheehans Syndrome which is basically damage to the Pituitary Gland usually occurs during childbirth when there has been heavy blood loss.
GPs very rarely ever see a case in their working lifetime.
It can only be diagnosed by a number of specific tests carried out by an Endocrinologist not by any GP tests.
I would ask for an immediate referral to a Pituitary Specialist/Endocrinologist.
Write down everything that has happened since the childbirth trauma.

The Pituitary controls a large number of hormones necessity for life including Cortisol(low levels cause similar symptoms to what you mention). Severe Adult Growth Hormone Deficiency. Secondary Hypothyroidism(caused by lack of ACTH hormone)

I was misdiagnosed with CFS/ME for 15years(every symptom you have mentioned) until I was finally diagnosed with Hypopituitarism by then my life was over basically lost everything.
Although the Hypopituitarism was caused by a severe closed head injury in my case it is still similar to Sheehans Syndrome(basically lack of blood supply to the Pituitary Gland).

Here's a link

www.yourhormones.info/endocrine-conditions/sheehans-syndrome/

Here's a link to the article that I took to my GP(it was actually in the DM but the article now appears on the following....

www.meassociation.org.uk/2014/05/the-brain-injury-that-could-be-behind-30000-case-of-chronic-fatigue-mail-online-18-may-2014/

@Amini @Nat6999 should have tagged you in for the above info