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Original poster

My undiagnosed illness is ruining my life.

49 replies

birdsflying · 14/05/2014 15:06

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 :) 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 :(

Anybody experience anything similar?

OP posts:
EffectiveCommunication · 15/05/2014 00:41

www.stars.org.uk

EffectiveCommunication · 15/05/2014 00:42

www.ehlers-danlos.org/what-is-eds/medical-information

The holding your head up could be Chiari mentioned above, hard to know on a few symtoms, you need to get referred to some specialists really.

YeGodsAndLittleFishes · 15/05/2014 01:00

OP, as the symptoms you have appear to point to vitamin B12 deficiency and your health improved when you began to eat meat, this would seem to be the best route to go down.

Many people get a false negative (show to be within the normal range when deficient) with various tests for B12 deficiency. It would seem sensible to ask for further tests as they can't say you're not deficient because of one type of test.

In the UK you have the right to have a named GP and to see them. Find a local GP to see and make a double appointment and ask them to go over your notes and get to the bottom of your illness. They may need time to do a bit of reading and look things up, hence the double appointment.

ThisIsYourSong · 15/05/2014 02:42

Another long shot, but can cause fatigue is haemochromatosis

awaynboilyurheid · 15/05/2014 08:43

overthemill, your poor daughter, the Dr I commented about was suggesting that chronic fatigue is a symptom of something else going on eg virus auto immune condition something we don't know about yet , he was not suggesting its not a real condition, in fact the complete opposite as he was a virologist and had spent his life helping people like your daughter.

My Gp thinks I have ME chronic fatigue too but I have improved on medication because with proper investigationit was found I have hashimotos I just wanted the op to know because it can mimic chronic fatigue.

Original poster
birdsflying · 15/05/2014 08:56

Thanks for all of your replies :) Really has made a difference hearing from you all as i've been feeling so alone with it.

Overthemill. I'm so sorry to hear about your daughter.. It must be so frustrating and hard for you all as a family. I can really relate to what you are going through. I have been bed bound before and almost ended up in a wheelchair- She will get through this! Her body will snap out of it one day as though it never happened.

I will research all of the other suggestions. I phoned my docs up and pushed for a LYMES test and also mould testing as my house is incredibly damp.. Can never keep the mould at bay. Apparently it can cause M.E symptoms.

OP posts:
naty1 · 15/05/2014 09:59

I also say thyroid.
Find out the actual levels as it can go after birth
Are you hot/cold.
Did you take a pregnancy multivitamin? As this contains lots of different nutrients.
Have you had glandular fever?

overthemill · 15/05/2014 21:35

It's just worth pushing for more tests/ diff doctor I think. Totally certain my dd will get better but doctor says a very long time sadly.

Our battle now is with the services who are not helping us. I am main carer, given up work, and doing my own health and head in. Not been out of house except to hospital for 10 weeks!

littleowl14 · 16/05/2014 06:12

hi op - sorry just had a thought - I assume MS has been ruled out?

Swoosg · 16/05/2014 06:30

Mould testing sounds like a good idea.

If you don't get anywhere, consider doing the Lightning Process. Can have ASTONISHING results.

Weegiemum · 16/05/2014 06:49

Have you had a proper neurological history/examination done? You said there's nothing wrong with your brain, but neurology is so much more than that. I get the fuzzy head/extreme fatigue as part of a neurological condition, and get an IV treatment once a month where I meet other folks with the same/similar conditions, which have many of the symptoms you're experiencing. My condition doesn't affect my brain or spinal cord, only my peripheral nerves.

A full neuro exam takes at least an hour, and though GPs know the basics, a neurologist can make decisions that a GP can't (nothing against GPs, I'm married to one!).

I hope you can find an answer soon - my diagnosis took ages and I thought I'd never find out the problem!

doziedoozie · 16/05/2014 07:22

I was helped by Mickel Therapy def worth a try if desperate imo.

awaynboilyurheid · 16/05/2014 09:10

overmillhope you don't mind me suggesting something but have you heard of Dr Peatfield, He has written books on adrenal fatigue might be worth looking into , and also the work of Dr Skinner, who has sadly passed away, as I know he helped people with chronic fatigue.

brancaster · 16/05/2014 18:13

This reply has been deleted

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Theonlyoneiknow · 16/05/2014 21:01

Very often Lyme disease tests will be negative when the patient does have it. It can be a pig to diagnose and in general Gps in this country don't know much about it. I hope it isn't Lyme disease OP. Do you recall being outdoors and getting a tick bite? They are very hard to spit though, can be the size of a freckle. It can very often be misdiagnosed as ME, chronic fatigue etc

overthemill · 17/05/2014 21:36

Lyme disease can be the thing that kicks off CFS/ME as well.

ROUNDandROUNDINCIRCILESMORETHA · 17/05/2014 23:53

Have you been tested for rheumatoid arthritis?....you can do this via another blood test. It can affect you so much if not on medication. I have it and related to some things you said.

Sthlonmum · 18/05/2014 00:00

You poor thing. Have you been tested for Addison's Disease? ( it's where your adrenals produce little/no cortisol). I have had it for 15 years and some of your symptoms match mine pre diagnosis.

puffylovett · 23/05/2014 18:35

Adrenal fatigue can be tested - you need an Adrenal Stress Index test from Genova Labs, preferably with Secretory Iga to see if your mucosal immunity is fighting something - inflammation or infection. Also find a good naturopath / nutritionist via BANT.

I am one, and have never yet failed to help anyone with ME/CFS.

Ifpigscouldfly · 23/05/2014 18:39

Have you been tested for Lyme disease ?

Ifpigscouldfly · 23/05/2014 18:42

As just seen you may not have. Beware a lot of Lyme tests come back negative when they aren't !

Stuffofawesome · 06/06/2014 21:55

Might be a long shot but I have just cut out foods containing high levels of lectins and feel so much better in just a few days

MerdeAlor · 08/06/2014 19:04

OP it sounds like ME to me.

I'm recovering from encephalitis and have the similar symptoms to ME except my neurological system top was quite badly damaged and I'm recovering (relatively) quickly being 10 months into recovery.

I did lots of research, this is what has helped me improve massively:

Eat paleo: no grain, no sugar, only a small bit of dairy. No sugar has changed my life as I no longer have energy boom and busts. My blood sugar is absolutely stable.

I take magnesium and theanine supplements

I have D-ribose powder dissolved in water three times a day

I pace, only doing 80% of what I'm capable of in any one day, never letting myself get too tired.

I ensure I get proper sleep - every night

Try those and see if they help you Flowers

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