To just want to know what's wrong with me and get my life back. Everything's such a bloody mess :(

[JulietBravoJuliet]

Not really an AIBU but don't know where to post or who to speak to. I'm so fed up.

Until October last year, I was in good health, then I herniated two discs and was laid up for a few weeks. New Year's Eve I had an accident resulting in a brain haemmorrage which laid me up for another few weeks. Since then, I've felt like crap. I'm permanently shattered, I ache all over. My elbows, knees, hips, back, neck all hurt all the time. I've got no strength at all and I feel bruised all over to the touch. My IBS has gone off the Richter scale and I'm not sleeping despite being so knackered I can't keep my eyes open; I lay in bed physically and mentally knackered, yet it takes hours to fall asleep as my heart is racing and I'm in pain all over. Once asleep, I wake up loads as I get cramp and pins and needles in my legs.

I've had blood tests done and was prescribed vitamin d as my levels were low. This is now normal but I still feel like shit. They've checked for rheumatoid conditions but found nothing. It's affecting my life and I'm so fed up with feeling like this.

I've been looking for work, as I was made redundant last year and have only been working 16 hours a week since then. After applying for over 70 jobs, I have, this week, been doing a trial in a cafe locally. It's fairly demanding work and I've been on my feet all day, but it's still less hours than I used to work (was doing 7 days a week, 55 hours at one point), yet it's absolutely killing me. I'm coming home feeling weak and shaky, my heads pounding, everything's hurting and I have no energy whatsoever. I feel my home life with ds is suffering as I am knackered, snappy and just want to curl up in a darkened room. I need this job, I'm enjoying it to an extent, yet I'm sat here in tears at the thought of going in tomorrow morning because I just feel so bloody drained :(

I've got another appointment at the docs on Tuesday, but I do to know what else I can do. Doctor has suggested I might be depressed, which I admit I probably am, but I wasn't before I started feeling like this, so I don't think depression is causing this iykwim.

I need to get myself back to normal; ds is currently being assessed for possible ASD, my dad's not well and I need to have the energy to work and deal with their needs as well. I'm so skint it's beyond a joke but I'm really panicking at the thought of being this knackered every day. I'm not coping at all :(

Sorry for the essay, I just need to vent somewhere. I'm just so fed up.

Blood tests don't diagnose functional disorders where there is no organic change to see just altered function. I had a blood test for Lymes - it is readily available. Have you heard of Postural orthostatic tachycardia syndrome? Have a read and see if it fits.

I have Fibromyalgia and ME

It sounds a lot like that to me

and definitely see a different doctor

sorry to hear you're feeling so shite

Thank you for your kind words everyone :)

On Friday, my trial finishes and I'll find out if I'm going to be offered the job. If they do offer it me, I don't know what to do as I desperately need the money but I feel as though I'm running myself into the ground at the minute and I'm not sure I'll cope very well. I've been trying to work through it and hope it gets better but that just doesn't seem to be working, and I'm scared I'll make myself worse :(

I felt exactly the same 6 months ago op and it was a scarey place to be. Once I had a caring non dismissive Dr things fell into place. I didnt suddenly get well overnight but I had the support and advice I needed. Since then I' be met countless people who have had nasty illnesses that have been undiagnosed. They can only find what they are testing for. Take care and feel free to pm to chat if that would help.

Hi - I just wanted to give you . You have had a rotten time.

It can take a while to recover from even one of those things, never mind what you have been through. You must feel exhausted.

I think you do need to see a new GP though, OP. I don't think it's fair to label these things as depression as something else, causing you to feel so crap, might be missed.

Just to add that the 'IBS' might be coeliac disease? I have this and under active thyroid as they are related auto immune diseases. Symptoms of coeliac are very similar to IBS and new guidance says IBS should not be diagnosed until coeliac been tested for. A gluten free diet is the treatment for coeliac. I have felt the same fatigue and brain fog and it is hugely difficult to deal with when you have lots of things you have to do but doing less does seem to help. Pacing yourself is the way to go, so days you work don't clean the house as well, good luck, hope you get some answers soon.

I'm back up again after not getting to sleep until 4am :( I'm so stiff and achey first thing, it's driving me mad!

Thanks for all the suggestions; I'll insist that the doctor checks me out more thoroughly on Tuesday.

Juliet just wanted to say that you are doing so well after everything you've been through and are going through. I think Supercosy may be on to something with you having an autoimmune response to everything. Someone I know had a syndrome (sorry can't remember the name) after having a couple of full on viruses and had numbness and pins and needles in their hands and feet which took a few months to get over.

Good luck with the new GP

It does sound like Fibro or M.E, which can be triggered by extreme stress in some cases.

And bollocks to your doctor, there is scientific evidence for both existing, he's an ignorant twonk. Go to see another doctor. Get tested for Lymes and Fibro.

I really hope you start to pick up soon. You need to put yourself first for now and rest to give yourself the best chance of recovering.

Coeliacs sounds a real possibility, a total pain but better than feeling awful (and if it is that it has long term consequences). With your low Thyroid it is even more likely. Also ask for more than just the basic Thyroid test (the extra one costs about £3 I noticed whne my GP ordered it).
As for Lymes diesease this is what NHS choices say maybe print it out and take it with you. There is a blood test.

Sorry your GP sounds pants.

Please, change your GP if you can. This one is just not good enough to help you access the care you need to get better. He is acting as a barrier in fact.

That's a lot to cope with in a short space of time.

Did anyone speak to you about the effects of your brain haemorrhage and how long they will last? Even quite small ones can have an effect. Tiredness is often a symptom that lingers on when all others have gone and depression can also be triggered. The charity Headway [[https://www.headway.org.uk/home.aspx Headway]] has lots of useful information which could help you.

Good luck with the new GP. I'd remind them about the haemorrhage when you go as well as discussing your other symptoms as it's the kind of thing that gets forgotten about

Sorry about link - posting from phone

A good friend of mine had a brain injury (she fell off a mountain and fractured her skull amongst many other bones) and 3 years on still suffers badly with fatigue. She's had a huge amount of support from Headway, so I second the idea of getting in touch with them.

Your GP sounds awful. As others have said, there is a test for Lymes, and his/her attitude sounds awful. Is it possible to change surgeries altogether?

I have had a neurological illness for over 2 years now, that causes numbness, tingling, aches, shooting pain and ghastly fatigue. Neurological pain, which is what yours sounds like, isn't like normal pain, and normal painkillers don't work on it. If you are really struggling with pain I'd ask the new doctor to refer you to the pain clinic where they will understand and be more ready to take your pain seriously.

Presumably if you had a SAH you were looked after either in neurology or neurosurgery - could you ask to be re-referred to there? 4 lots of blood tests doesn't sound like much tbh, at my first neurology appointment they drew off 17 tubes of blood - practically an armful! Have they checked your Bvits, especially B12?

Sorry, that was a bit of a ramble! I do sympathise, when I first got ill it took ages to figure out what was wrong with me, I was variously diagnosed with diabetes, meningitis, ovarian cancer, multiple sclerosis and a brain tumour before they got it right. It's immensely frustrating, and for me it only took a few weeks.

You have a shocking amount to contend with, but please have faith that you can get much better no matter how appalling and hopeless things seem. I echo advice given to consider a fresh pair of medical eyes reviewing your condition(s). You can and will feel better, and it might not be tomorrow or next week, but it will come.

Can you try going gluten free for ibs. Often gluten is the cause.

Also swap gp's

Lastly andew Johnson apps/cd for getting to sleep. They are amazing xx

I'm not a doctor, but it seems to me more than likely that all your health problems stem from the brain haemorrhage. Too much of a coincidence otherwise, isn't it?

And in my experience, when GPs can't find something physically wrong with you, they are likely to diagnose stress or depression or something similar. Of course you are depressed - but you're depressed because of your physical symptoms, not the other way around.

It's really tough if they can't find anything through blood tests, but that doesn't mean there isn't anything wrong with you. Have you had a google to see if other sufferers from brain haemorrhage have experienced something similar?

I think you need to get this checked out, this accident and brain haemmorrage, it sounds like it should be looked at again, I agree with those who say contact Headway.
I'm not convinced by your doctor who suggests depression. I think you need to see a different doctor.
I see a couple of mentions of fibromylagia, I don't have fibromyalgia so I don't know what it feels like, but you could read this and see if it sounds possible.

You are in a bad cycle of not sleeping then being knackered. Can the doctor prescribe a short course of sleeping tablets just to get you back in good habits?
They wont give you many because they are addictive, but worth a try short term?
Badger the doctor for more investigations. He who shouts loudest gets - whatever the rest of the saying is, iykwim.

Hi op, hope you get some better advice from the dr on Tuesday. Some drs are a waste of time!
Have you been tested for arthritis? I've got psoriatic arthritis and that cause joint pain, fatigue, foggy brain, stomach problems (ibs) etc. Have you ever had psoriasis?
They can test for rheumatoid arthritis but not psoriatic but they can diagnose based on your symptoms.

As soon as I read your op I thought fibro. Another sufferer here. I really sympathise and am glad to see that you're seeing another go. I'm on my 7th or something doctor now and have finally found one who is referring me to a cfs/fibro clinic to be tested. Even if it comes back that I haven't got it or something like it they will have a better idea of what I do have and will be able to refer me to a pain clinic, which seems to be what you need too.

Thought that I'd also add, with those saying to try get rid of gluten, I have it up in Feb 2013 and had improvements immediately. It was a major contributing factor to the fog and my bladder problems. I only did it to see if it would help my bowel problems (which it also helps with!)

I can now handle it occasionally and might have it once or twice a month.

Dairy is the other big one. I can cope with small amounts of it but struggle with large amounts. Combining dairy and gluten causes big issues too for me. So what I'm trying to say is it might be worth testing it yourself if you feel up to it too see if something or some combination triggers symptoms.

Unfortunately, things like this do happen to good people. You feel like saying,"This isn't me, this isn't my life."
I had a bad accident, (actually, I just slipped), but I completely smashed up my ankle, lower shin & heel. Bonkers really! I've been on crutches ever since & at the end of the month I'm having it fused: ankle operation number 4 in under 3 years.
Just over a year ago, I was diagnosed with breast cancer. I've had 3 operations, including a mastectomy for that. The last option went wrong & I was having my wound packed & dressed for 2 1/2 months & over Xmas & New Year. I'm having my last procedure linked to that next week.
I'm off work, on 1/2 pay, & life is tough.
They say what doesn't kill you makes you stronger, but I'm not sure I agree with that.
What I do know is that it's a period of time that I just have to get through. I just have to put my head down & plough through it. After that I can think about getting back to normal, BUT, it will be a new normal.
Keep going, keep your eyes on the horizon, because you will land & be able to start a new type of normal life at the end of it.
Very unmumsnetty hugs.

The test for Lymes gives a lot of false negatives, so although a positive test might be useful, you can't deduce much from a negative.

BTW, WRT "functional disorders where there is no organic change to see just altered function", the hit-n-miss Lymes test is a good example of the problem with this.

"Seeing" depends entirely on the available science. One can't make the statement "there is no organic change". Only, "with current technology, understanding and level of research we haven't noticed an organic change."

Terms like "functional disorder" can be useful shorthand for "We don't understand this and had best get on with whatever practical management we can find in the meanwhile."

But there's a tendancy to mean, "We don't know what this is. Therefore we DO know what this is: it must be psychosomatic." And to build a whole edifice on this unsound foundation, from failing to test for other conditions to applying dangerously inappropriate treatments.