Newbie here

[Daisycav]

Hi everyone.I am new to this but hoping I may find some advice on my health.I have realised that the best advice comes, not always from Drs but from those people who live with illness and disabilities every day!

For a year now I have been living (or existing) with symptoms I have never experienced before in my life.I felt ill at work one day, I just wanted to sleep, couldn't stay awake.My parents had to fetch me as there was no way I could walk let alone drive home! In the car I just lay down to sleep and apparently was talking some gibberish to my mom.Got home and lay on the sofa and didn't move again for 3 days.I just slept and slept occasionally waking for a few minutes then dropping back off.As I got no better my parents took me to my GP who said 'I was stressed' but after doing my blood pressure and finding it very low referred me to the local hospital.

Hospital put me on Iv fluids and did a whole load of blood tests,I just slept, then sent me home after 24 hrs telling me to drink more and eat healthily!

Next day I had a call telling me that my cortisol levels were very low and they wanted me back for a synacthen test.This turned out normal so that was it.2 weeks of extreme fatigue and I went back to work.

For over 12 months now I alternate between stuck in bed unable to even lift a hand or head for weeks or dragging myself to work trying to get through when I'm feeling better.Ive had numerous tests, all ok apart from a Vit D of 5 ( now corrected) I have no social life, struggle to drive a lot of the time as I'm dropping off and work is getting rather impatient with me have large chunks of time off without knowing why.My memory is terrible, I lose words mid sentence and cannot remember things from recent days.My Dr says that they cannot find anything wrong and it's probably stress!

I've had anxiety and depression for 7 years so I know it is not just stress! I'm sick of feeling exhausted and have to pace myself.If I have a really long journey or go out with my family for the day I'm usually laid up 1or 2 days later shattered.

With no answers or anything and the doctors telling me well we've tried everything and all your MRI, bloods, tilt table, echo etc are normal, I'm sinking into depression more and more.

[Frodo]

Hi Daisy, this sounds as if it might possibly be B12 deficiency, aka Pernicious Anaemia (obviously I can't diagnose you and am not a medic).

The tests for this do not give an accurate measure of how badly someone is being affected by the condition, and the 'normal' range is set, in the opinion of many, too low. In other words, you will be told it is 'normal' and is not causing your problems, so therefore you must be suffering from 'stress'. The actual anaemia is usually something that occurs later in the process by which time you would already be very ill neurologically speaking. The earlier stages include the symptoms you mention. Treatment is with injections of B12. If you haven't been tested for this or are going to request a further test, it's important not to take B vitamin supplements beforehand as they will cause a false reading.

You might want to look at the website of the Pernicious Anaemia Society and/or read the book 'Could It Be B12?' by Sally Pacholok. There's a PA forum on Health Unlocked if you find out this might be your problem.

The TSH test for thyroid is said by many people to have similar issues, in other words, you might fall within the 'normal' range for the test while still having clinical symptoms.

[ME65]

Ask your doctor if he/she thinks you might have ME/CFS. Whatever the answer, as some are still ignorant about how serious this illness is, ask to be referred to the nearest ME clinic. Unfortunately if you are in Wales or Scotland these don't exist but you could ask for a referral to a neurologist or rheumatologist who has an interest in chronic fatigue.

Good luck x

[ukmsmi4]

Hi Daisycav , welcome to the group.

I notice in your post you mention low cortisol levels. As ME65 says you need to speak to your GP about the possibility of ME or CFS. Low cortisol levels are a common problem with the condition. Here are a few links that discuss the subject to help you understand. You might also find it useful to take this info with you when you see your GP.

drmyhill.co.uk/wiki/Common_...

phoenixrising.me/research-2...

healthrising.org/blog/2014/...

Hope this helps.

Gentle hugs, Margaret. xxx

[Daisycav]

Thankyou for your replies.Its so kind that you have taken the time to answer

I will look into the B12 and ask my GP.Its certainly something that has never been mentioned or thought of I don't think.

I forgot to add to my original post but the last twice I have been to my GP's for a sick note ( (haven't seen my usual Dr) he said "do you think it's ME? " Well of course I didn't have a clue?

As I'm under a consultant at the hospital and he isn't my usual GP I don't think he wanted to pursue it any further.

I'm definitely going look at those links you sent Margaret thank you x

[Hidden]

You describe what I was experiencing when I first went looking for help. I thought I had a brain tumour or dementia, I was so scared to add to the physical exhaustion. I couldn't understand how I would fall asleep talking with someone as I was talking! When I think back a rush of fear goes through me.

First stop may be to look through the following document:

Canadian Consensus for ME/CFS: A Clinical Case Definition & Guidelines for Medical Practitioners

sacfs.asn.au/download/conse...

I found the pacing stuff below to be useful:

actionforme.org.uk/uploads/...

I was very VERY fortunate that my O.H dept Dr had previously seen someone suffering with similar symptoms and she had employed the services of Dr William Weir.

Well long story short fantastic understanding man, (confirmed what my GP had suspected but not diagnosed), and gave me a plan of attack.

He explained all about ME and how low vitamin D is common in ME sufferers, ( I had typed a whole thing about Vit D as I had forgotten I read it in your post - me and my bloody ME head!). I was also advised to avoid dairy and gluten vit D supplements and Omega oils.

To deal with the accompanying anxiety/stress/depression he advised meditation. I could understand the anxiety in the initial stages as I didn't know what was wrong but when I was lying vegging in front of the telly only to be gripped by a blast of anxiety! I think the ME conspired with the anxiety to keep me house bound. I still get the anxiety and can cope better with it through meditation and mindfulness but it can still be quite severe at times.

I have developed depression since I lost a much loved career, my education, my hobbies, my social life and my health in the space of a couple of years have severe RLS too, ( a very debilitating and excruciating condition little is known about ) and cannot tolerate anti-depressants so use mindfulness to try and keep the dark clouds at bay. All that said it could be worse and through the above steps.

Hope you find some answers and relief, take care.

[Daisycav in reply to Hidden]

Hi Rafa

Thankyou for sharing your story and experience when you first started being ill.Im so pleased I'm not the only one as I'm starting to feel people think I'm making things up.

Luckily with a huge dose of Vitamin D since my levels were found to be 5 that seems to have improved.I have had a tilt table test ( negative) and I'm now waiting to see my consultant again.I was told 6 weeks.its been 5 1/2 months! I am no nearer to a diagnoses than I was when I first became ill and I notice my depression is worse again.

I am going to read your articles Thankyou so much for sharing them. All I want is some answers as my life is on hold and apart from work I do not venture out any more.

Look after yourself and thanks again x

[Hidden in reply to Daisycav]

My pleasure. Talking with my wife yesterday I came to realise that a major problem with my health is that I cannot put a time on when I'll recover.

I am about 4 years into this journey and there is no end in sight. I believe that most things can be tolerated if the person knows how long it will go on for. When you know that you can count off the days which helps you cope better. So at the moment its a bit like staring into the abyss and life has become stagnant

Here's hoping you get the answers you are looking for.

Take care.

PS. It could also be something like Adrenal Fatigue/HPA axis problem:

adrenalfatiguesolution.com/...

worth checking it out too.