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

CFS or ME are usually given as a diagnosis when all other reasons for your symptoms have been ruled out. So please don't accept this as a first diagnosis unless you have had a battery of tests and seen specialists first. Rheumatology is a good place to start.

Do you also suffer from clumsiness? Minor injuries, twists and sprains etc? Do you know if you have hypermobile joints?

Thank you for the reply

Fortunately no I don't, suffer from twists and sprains that is. Wouldn't consider myself to be clumsy either, a bit unorganized and scatty brained at times but not prone to trips and falls or anything like that

No hypermobile joints AFAIK, I am very "clicky" though. I'm only 25 so not sure that's entirely normal at my age?

I had the same thing and was diagnosed with post viral syndrome. I'm afraid my GP wasn't much help and I just had to ride it out, but it did mostly wear off after about 18 months. The first 6 months were the worst.

A few years after that I had cellulitis and a relapse.

www.medicalnewstoday.com/articles/326619.php#what-is-it

I had CFS/ME for some years, but i’m largely ok now, having worked out what I needed to do to conquer it. As pp says, it should be a diagnosis of exclusion, so push for all possible tests.

The cardinal symptom of CFS/ME is not just fatigue, but Post -Exertional Malaise, where there is a delayed and exaggerated response to physical activity - eg a trip to the shops on Monday is followed by four days (or more) of exhaustion, necessitating bed or sofa rest that starts on Tuesday or Wednesday. Does that ring any bells?

Whatever it is at the moment, I would suggest as much rest and sleep as you can get (appreciate this is difficult with kids), plus good nutrition and as much destressing (eg meditation, relaxation/hypnotherapy etc) as poss. Try not to stress (easier said than done, I know), as being in fight or flight means your body can’t heal and repair itself.

So pleased to read that you're both largely better now.

Post-Exertional Malaise definitely rings true for me. I had a very small window of energy yesterday, used that to go and get my bloods taken then ran the Hoover round when I got home - then today, bam, absolutely debilitated again

Having to do an online shop so I'm going to fill it up with fruit and veg. Whatever I can do to get better I will do. I'm also taking 2 x 1000mg vitamin C a day alongside various other vitamins and Echinacea

5 weeks seems like a pretty short time to be considering a CFS/ME diagnosis. Could be post-viral, could be a whole host of other things.

Took 4 years and multiple doctors for me to be diagnosed with cfs

Sorry I wasn't clear, the throat and ear problems along with an upset stomach has been going on for 5 weeks, that's just the most recent bout of symptoms - but the exhaustion and back to back bugs and viruses has been ongoing for almost 7 months since I had septicemia.

I think it was about 18 months before I was diagnosed almost 30 years ago. I still have to pace my activity and nap every afternoon I’ve just learned to live with it

30 years of feeling like that i really do feel for you Costa, and here's me moaning about months.

Doctor hasn't mentioned CFS yet, it was something I was considering after spending a few hours researching the ongoing debilitating exhaustion.

I'm hoping it's something more easily treatable, I'll know more (hopefully) when I get my bloods back

The thing is, if there's some other cause of the exhaustion - like constantly being ill with viruses, it's probably not CFS. CFS is generally only diagnosed in the absence of other things.

Yes it sounds like it could be a possibility but it’s really important other conditions are ruled out first. Once you have an M.E. diagnosis it is not easy to have the symptoms properly investigated so make the most of the opportunity to do so beforehand.

A good place to start is blood tests to check for thyroid disease, B12 deficiency, vitamin D deficiency etc. All of which can mimic M.E. symptoms and leave you feeling very unwell.

Look up the symptoms of vitamin D deficiency and if they seem to fit (as I think they will) ask your doctor for a test.

It made a huge difference in my life.

www.healthline.com/nutrition/vitamin-d-deficiency-symptoms

Good points about thyroid problems and deficiencies.

I can't for the life of me remember what tests the doctor ordered. I know there were 4 (or 5) requests on the blood form, one I know for certain was a full blood count but the others I don't recall.

I'm really hoping something non major is picked up and can be treat easily.

Would thyroid problems or deficiencies come up in standard blood tests?

Doctor wondered whether it was glandular fever but I had that as a teen and thought you're then immune afterwards. Even if some of my most recent symptoms are GF it doesn't explain the months and months of being run down and poorly.

Really appreciate the responses btw. I know it's a bit of a boring thread, I'm just exhausted with everything at the moment and feeling a bit lost

I've just looked at that link for vitamin d deficiency and I do tick a few of those boxes, including hair loss which I was attributing to being post partum.. hmm that is definitely food for thought

That's tough with young children. Absolutely agree with other posters, check vitamin levels, thyroid etc.

I have had this for many years, the post-exertional malaise is the killer, also I tend to rush round and do things once I feel a bit better, which is a Really Bad Idea. I also get the low abdominal pain, IBS can be brought on by stress or fatigue.

I was diagnosed by an endocrinologist. His advice was very helpful. First, supplements of B12 and D3, I went on levothyroxine too. He strongly recommended an afternoon nap, to lower my stress levels and help with good sleep at night. He recommends a daylight lamp during winter, and sunny holidays if possible. (Sadly I haven't had a holiday for decades, I get too fatigued to travel far.)

Interestingly, the Dr thought my problems were related to exposure to Glandular Fever.

I survive by pacing myself, basically. I am retired so I can chill out when I need to. It must be rotten for you.

BUT people can and do get better, and being young is a tremendous advantage.

Wishing you a speedy recovery

Just read your update re Glandular Fever. It can affect you for years, apparently, long after you recovered from it. Or so the Dr told me.

Thank you so much for the kind words, and I'm sorry that you've been suffering for so long.

The thought of feeling like this for years depresses me, I admire anybody who has to deal with long term health problems and can remain positive.

I feel as though some of the most precious times of my children's early years are being missed out on because I can't do everything I want to do with them. If it weren't for help, they would barely be getting out of the house. Poor things.

You might have food intolerances which are not major enough to cause issues on their own but in conjunction with the other illnesses will be putting a strain on your body.

Sounds like you've never really had time to recover properly from septicemia if you have 2 DC?

Anyway I had CFS for about 2 years but would no longer meet the criteria now, 5ish years later. In a nutshell what helped me was pacing (NHS) plus seeing a complementary therapist (kinesiology) who identified wheat intolerance and treated me according to other kinesiology type stuff which I don't claim to understand or believe in but it worked! I went gluten free and it was life changing. But only in conjunction with pacing and accepting I really was very ill. I had to do quite a lot of emotional/MH work too around self talk and self care. I had to understand CFS was a cycle I was stuck in and had to break as many parts of it as possible to get out.

I had GF when I was 13-14, I seemed to bounce back pretty quickly from what I remember but my immune system was always a bit rubbish afterwards. Constant tonsilitis and throat problems for example. Always ill a handful of times per year.

I wasn't too held back by that and could function normally, it's since having my daughter then septicemia that my immune seems to have given up on me. I've never had so many health problems in such quick succession it has unnerved me a lot

Interesting suggestion about food intolerance too.

I do sometimes get stomach ache from some cheeses, but never milk, some herbs give me a painful gut too.

What is pacing please?

I had ME for 7 years, after a run of viral illnesses and huge stress.

I'm totally recovered now (and have been for 12 years!) with no consequences at all.

My main symptoms were awful, feel-it-in-your-bones fatigue, aches/pains, sensitivity to light/noise and a low immune system. At my worst, I was bed-bound and needed a wheelchair and carers.

I had to rest, pace myself and build my strength back up again slowly. You need to learn when to rest and when to push yourself - a very delicate balance.

Eating well (balanced diet, healthy BMI), working on positive mental health (stress is the absolute enemy of ME) and exercise (within limits) are all vital for recovery.

Really glad to read that you're another who has recovered, BEF. I'm sorry you were suffering to that extent.

Obviously I would much prefer it not to be CFS/ME, but at least I know that worst case scenario it can be managed and in a lot of cases improved.

I've had alot of stress over the past year so that will undoubtedly be playing it's part in me being run down.

I'm in therapy at the moment for PTSD and my therapist was a nurse beforehand, she's of the opinion that my health problems are a direct result of septicemia IE my immune system has taken a huge knock and needs time to recover, but almost 7 months on I'm wondering how much longer all of this can be attributed to that.

I've known other people who have had it with childbirth and can't relate to how my health is at all.

Thus I then wonder whether something else is going on.

I have been diagnosed earlier this year with M.E at the grand old age of 27. After 10 years of basically living in hospitals and doctors surgeries.

This isn't something you get diagnosed with quickly regardless of the severity of symptoms - if for no other reason than the sheer amount of tests (and often they need repeated) that is required to actually accurately diagnose M.E.

I read about M.E back in my teens, and hoped with everything I had, that it wouldn't turn out to be M.E. I hoped, wished and genuinely believed it would be something else that was treatable. Sadly I've had to accept the inevitable, and I've had most tests going (yes I was b12 + folate deficient - however my symptoms didn't vastly improve even after a long time with injection supplements for the b12 and oral folate).

Some people with M.E get better. Most don't with an accurate M.E diagnosis.

You need to meet 4 diagnostic criteria to have an accurate diagnosis - not just post exertion malaise or fatigue. The fatigue is absolutely crushing though, and I'm sick to the back teeth of waking up every single day completely exhausted and having to fight it. So I do feel for you.

I completely echo others. Explore every single possible option other than M.E to ensure you get proper investigation of your symptoms. THEN maybe readdress the possibility of M.E in a few years. You run the real risk of it being another health issue that could be identified and otherwise be treated much better than M.E, it's not something to accept as a diagnosis so early on, it really just isn't. xx