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My undiagnosed illness is ruining my life.

(50 Posts)
birdsflying Wed 14-May-14 15:06:49

This is a massive rant just because I feel so alone and as though I can't cope anymore. I'm crying my eyes out just typing this...

I've been ill on and off for 5 years. It started when I fell pregnant and was so severe I could barely stand or hold a conversation. I thought that it would be a temporary thing and I would get better once I had my son. I did not get better...

I struggled as a new mum but was happy that i'd been able to give birth without any problems.

My illness got worse... I couldn't pick him up in my arms anymore, couldn't chew my food, struggled to keep my head up.

By miracle things started getting a little better and for a few months I was alright... I got hit down again shortly after falling pregnant with my daughter- I thought I wouldn't let this illness deprive me of having a second child.

I went for all the tests under the sun and apparently i'm a healthy human being. How can I be if I can barely do a thing. They told me I could have M.E CHRONIC FATIGUE SYNDROME. I could have this my entire life... I refused to believe this and looked into lots of things, my midwife was worried I wouldn't be able to give birth as I couldn't even stand up. So I gave my vegan diet up and started eating meat and dairy. Within 2 weeks I was a bright happy person again with all the energy in the world. It was amazing and I thought about all the things most people take for granted.

I had my girl, was so happy smile I was the parent i'd always wanted to be. I could do everything I wanted, look after the house. Play with the kids.. Read them stories and cook! I started back at college, got myself my dream job 2 days a week. Worked for 6months... Then BOOM. It hit again.. Passing out, dosorientated, fatigue. This was in October.. I'm still not working struggling every day.

The only thing that changed was that i'd stopped breast feeding. Apparently my hormones are fine though!?

I'm still ill and every now and again i'll get an amazing week or so and feel like i'd never been ill. During my bad patches.. I can't stand, barely talk.. my head is fuzzy, I can't think. Extreme fatigue even when waking from sleep.

My bloods are fine(extensive work has been done)
Thyroid fine
I don't have depression- Ruled out by docs
I don't have coeliac
I don't have anything neurologically wrong with my brain
I don't have M.E CFS after 6 months at clinic this is what they told me
Hormone levels are fine.

What is wrong with me. I'm 25... I've given up university, college 4 times, my dream job... I can barely look after my kids. I feel so alone, the doctors have told me that they don't know what is wrong with me and that there's nothing more they can do.... How can I live a life like this? I can see my partner running for the hills before long. I'm so lucky he has stuck by me- I can feel it taking its toll this time sad

Anybody experience anything similar?

WolfMoon Wed 14-May-14 15:47:18

I can't offer any practical help, but I didn't want to leave your post unanswered. Offering a hand to hold - modern medicine is so marvelous these days that when there's something they can't easily find an answer to, it's all the more difficult.

Could it be possible that it's linked to weather? Vitamin D can have a massive impact on a huge range of things, although you say you've had extensive bloods done so that's probably been looked at.

RudyMentary Wed 14-May-14 15:52:09

A long shot but have a look at 'adrenal fatigue'

vitaminC Wed 14-May-14 15:56:45

Vitamin B12 deficiency? Especially as you mention you used to be vegan!

Otherwise, yes, get your Vitamin D levels tested, like wolf said. I'm a medic myself but it still took over 2 years of feeling run down and barely functioning (and dozens of blood tests, hormone tests etc) before I actually discovered a severe vit D deficiency was causing all the various, apparently unrelated symptoms.

I now take a monthly supplement and use a sunbed every 2 weeks during the winter and I feel 10000x better!

birdsflying Wed 14-May-14 16:02:32

Thanks for the answers.. My vitamin levels are all norman and I've had B12 testing done which also came back normal.

I've looked into adrenal fatigue but again there's no way of testing for it. It is rather much like M.E an invisible illness. I was thinking of going to see someone who specialises in adrenal fatigue and see what they thought about it after looking at all my patterns of good and poor health.

vitaminC Wed 14-May-14 16:12:06

Have you been tested for myasthenia gravis? Here it usually involves an electromyogram and a blood test for antibodies (in most cases it's an autoimmune disorder). Not sure what testing is available in the UK, though (I'm in mainland Europe).

StraddlingTheFence Wed 14-May-14 16:27:57

Sorry, no idea what it is, but didn't want to read and run sad

Because it seems to be affected by hormones and diet (or possibly hormones in diet, since meat contains these) it might be worth looking into conditions which could be temporarily masked and/or stimulated by normal hormone fluctuations.

A few other things that spring to mind:
- heart conditions are often missed in women, even with an ecg, and match some of your symptoms (not wanting to scare you!)
- epilepsy; epileptic seizures come in many different forms and I remember reading how lots of people go undiagnosed for years because they 'zone out' for a brief period, rather than having what we think of as a typical convulsive seizure (more info here Seizures can be affected by hormones and diet and I'm sure I read that sufferers can have a run of good months followed by a run of bad ones. Seizures cause extreme fatigue and you can even have them in your sleep.
- sleep apnea can cause severe fatigue. It can be diagnosed through a sleep study

Have you had thyroid antibodies tested? As well as normal thyroid function test.

skolastica Wed 14-May-14 16:34:59

I had something unexplained, a bit like you are experiencing, but not quite as dramatic. Hit me when I was 29. Like you, all the tests revealed nothing. Now, twenty years later, I've experimented with nearly every supplement and alternative therapy imaginable. I'd say that I'm almost better, but feel that I lost a lot of years.

Advice would be to assume an autoimmune disorder and begin a supplementaiton programe with that in mind. Agree on the importance of adrenals and adrenal therapy. Don't wait for someone to say 'yes you have an autoimmine disorder' or 'yes you have adrenal fatigue' - following a nutritional support treatment programme for either will do you no harm.

Read what you can about heavy metal poisoning, candida.

I find that the information given on www.regenerativenutrition.co.uk very helpful, and have used it for years.

Also - would say to stay within your limits, as if you haven't got adrenal fatigue now, pushing yourself now will preapre the ground for adrenal fatigue later.

awaynboilyurheid Wed 14-May-14 16:37:24

Underactive thyroid? doctors usually say results are normal/fine as long as they fall into the guidelines but many cannot function normally if they are at the lower end of so called "normal"" and many countries believe our levels are set far too low, in the USA for example you would be treated with medication within our lower levels of so called normal so ask for a print out of your levels and for thyroid antibodies to be done too in case you have hashimotos thyroiditis which is the auto immune one. You can go on various websites, stop the thyroid madness Thyroid patient advocacy or thyroid Uk to find list of symptoms and see if it is a match with yours.

awaynboilyurheid Wed 14-May-14 16:40:21

People with lots of underactive thyroid symptoms which have so called normal /fine blood results are often diagnosed as Chronic fatigue/ME, its a symptom of something not a disease a wise Dr once told me.

GrassIsSinging Wed 14-May-14 16:41:20

Could they have missed B12 deficiency in your bloods? My dad had various full blood counts over the years and yet it still took almost a decade before he was diagnosed with pernicious anaemia (B12 deficiency). He now has a monthly injection and is like a different person.

fivecupsoftea Wed 14-May-14 20:17:34

So sorry to hear you aren't feeling well and that your doctor has unhelpfully given up. It's a shame you don't have a more helpful GP who is holding your hand in some way. I'm reaching mine out to you.

I also have some unexplained symptoms that my doctor has suggested might be POTS (you can google it, there is a POTSUK website). People who have this sometimes pass out, and have fuzzy heads and sometimes find talking hard. It is caused by autonomic dysfunction.

littleowl14 Wed 14-May-14 21:07:51

I'm so sorry sad that's just awful. thanks

I'd revisit a full thyroid blood test including antibodies. Ask for your results to be printed and double check them - here if needed.

Are you sure vit d, b 12 and Iron are ok? pretty much all of us are vit d deficient so I'm surprised that's ok.

littleowl14 Wed 14-May-14 21:12:15

reading about pots - could be a possibility?

duchesse Wed 14-May-14 21:19:48

OP have you ever been tested for Lyme disease? There is some evidence to link chronic fatigue with Lyme.

RubySparks Wed 14-May-14 21:41:47

I have had extremely similar symptoms but have had some diagnoses... Firstly coeliac disease in 2010, then HRT (earlyish enopause I am late 40s now) and then hypothyroidism (Hashimoto's) I have also been dealing with a lot of stress... Also low vit D which improved after taking supplements.

You have my full sympathy, it is horrendous dealing with the variability and fatigue. I feel better but not right so maybe still issues with levothyroxine dose or some other factor! Agree re-checking thyroid and get the results is worth doing, also antibodies test.

overthemill Wed 14-May-14 21:52:18

Chronic fatigue syndrome/ME is a real illness that can only be diagnosed after other illnesses have been ruled out. Thyroid problems should have been tested for. It can 'come and go' over many years and your symptoms do not sound inconsistent. Current thinking is that it is an autoimmune disorder. PoTS is a common condition in people with CFS and in Australia and Canada PoTS is a diagnostic criteria for CFS. In USA they think Epstein Barr and Lyme disease are two if the causal viruses for CFS.

What I am saying is that you could have CFS but maybe you should ask for a specialist referral ? The ME association have a list a specialist on their website as does STARS who deal with PotS.

My daughter age 15 is seriously ill with very severe CFS and is bedbound, cannot eat and is malnourished and can no longer form sentences as her cognitive impairment is so great. It is a real and serious sometimes life threatening illness. Even if you don't have CFS, get more medical advice.

CocktailQueen Wed 14-May-14 21:55:47

Overthemill - I am so sorry to read about your daughter. Hugs to you. Xx

overthemill Wed 14-May-14 21:59:03

Thanks cocktailqueen it is crap as there is little in the way if treatment nor help for us to care for her. She can't walk, we have no help from social services or health and slowly our own help is being eroded. Next step is PEG feeding.

upupupandaway Wed 14-May-14 22:02:18

Have had exactly the same thing as you. My doctors said it was " idiopathic"; junior/ locum doctors did further tests that were inconclusive, however they left and so the on going problem was never resolved. I feel for you; do you constantly feel as if you are wading through treacle?

CocktailQueen Wed 14-May-14 23:06:38

I can't believe there is no help for you. That is so tragic. Your poor dd. It makes me cry to think about it - what does it do to you? Xxx

wileycoyote Wed 14-May-14 23:48:33

Google low ferritin. Same symptoms.

LackaDAISYcal Thu 15-May-14 00:04:33

lupus or other connective tissue/rheumatic illness?

Have they checked your ANA, Rheumatoid factor, Anti-DNA?

I was diagnosed with mixed conntective tissue disorder three years ago, symptoms sounding similar; crushing fatigue (I could sleep at the drop of a hat) brain fog, confusion, swollen glands, general malaise, and pain in my joints (I had had various joint issues for the preceeding few years too), especially fingers and feet.

ANA came back positive, referred to rheumy and got my dx of MCTD. I have mainly lupus symptoms so am being treated for lupus.

unlucky83 Thu 15-May-14 00:17:48

I think it sounds like an autoimmune disorder too
I was going to say Lupus - or Anti-phospholipid syndrome (linked to pregnancy -miscarriage etc BUT no matter what your GP says - not necessarily ....)
Good Luck - it sounds miserable ...flowers but keep going back and insisting on getting help...

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