I hope it's OK to post here as I've also got this message on the General Health section and someone mentioned possible autoimmune disease. So I thought I'd try over here too:
This is a really long shot but I'm hoping that someone medical might be online and can suggest what I can suggest to my GP. I've had no luck across the last 3 years in getting a diagnosis for an episodic illness that has just recurred for the third time, after 10 months of complete and utter health.
Here are the symptoms - all of which occurred almost overnight, 4 days ago and are now unremitting, after me feeling completely fine and healthy for almost a year:
Acute, severe, very localised left lower abdominal pain sort of behind the left hip.
Crippling pain at the top and the base of my spine that makes it almost unbearable to sit upright - the kind of pain you get at the height of real flu - but no other flu symptoms.
Pain in my arms/bones/joints, as if I need 'oiling' like a rusty machine.
Intense nausea/loss of appetite (I normally have a very, very hearty appetite)
Very, very bitter taste in mouth.
Mouth sores/ulcers (I never usually get these)
Headache all night (I'm never prone to headaches)
Shivers - on and off
General feeling of being deathly ill much worse than any real flu etc.
Rapid weight loss - 4lbs in 4 days, after not being able to shift any weight for ages when trying (not trying now and scared about current weight loss)
Some increased 'urgency' in going for a poo but no real diarrhoea
I think those are the main symptoms. This is the third time I've had exactly these symptoms in the last 3 years and each time, an 'episode' has lasted for 5 months! After about 5 months, I've gradually recovered and returned to total health, feeling strong, energetic etc. Nothing has changed in my life recently and I'm generally very happy, not particularly stressed and never had any mental illness.
The first episode happened after a really nasty bout of proper flu when I'd taken ibuprofen across about 2 weeks to manage the symptoms and I'd thought I'd fucked up my digestive system because of this. I had all the usual blood tests, colonoscopy/gastroscopy/rectal sigmoidoscopy and the only result of any note was a very raised faceal calprotectin test.
My consultant concluded it was 'just IBS'. No treatment. I gradually got better but had 5 months of a completely compromised life.
After about 15 months, I had exactly the same symptoms again but this time, the context was me feeling extra well, just started exercising/running, had expanded my diet from Low Fodmap to more normal eating for months, with no problems. Once again, I suddenly had 5 months of totally ill health, barely able to walk and work let alone exercise. Gradually got better.
This episode is in another context of total health and well-being. The only thing I'd noticed in the last few weeks was sudden inexplicable periods of fatigue but these were only brief.
I'm 55 and almost menopausal (last period was July last year). I've had a really easy menopause with barely a hot flush. Last time, my GP had suggested it was 'possibly hormones affecting digestive system'. However, I've had a normal digestive system for over 10 months and been eating a full range of foods with no problems. Overnight, I'm suddenly catastrophically ill again and have no idea why.
I now think the digestive issues may be a red herring and that there's something more 'systemic' going on - but what?
I know it's not life threatening. I'm feeling so well and healthy between episodes. Is it hormonal? I had a uterine scan last time and there was nothing of note. Blood tests indicated perimenopause but nothing to explain the symptoms I've got. Consultant is convinced my digestive system and colon are all fine - but why then the excruciating very localised, lower left abdominal pain - like a hot spear in my side?
I've not got the classic IBS symptoms.
I think the most scary symptom is the intense pain in my spine and the general feeling of being more unwell than I've ever been through a 'normal' virus. Yet it's not ME/CFS as I'm utterly well and healthy for months and months between bouts.
I'd give anything to get a diagnosis, even if there's no cure. I feel stupid going back to my GP as he did the whole range of tests twice, across the last 2 years and I normally never go to my GP at all.
Could it be that certain tests were done at the 'wrong time' when I was already getting better and so nothing came up? But if so, how then do you ever ensure tests are done at the height of this illness, as there's always a wait, whether NHS or privately?
So I'm turning to the collective wisdom of MN, especially anyone with a medical background. I'm sensible enough not to rely on anyone's 'diagnosis' of course and will return to my GP in due course but I'm absolutely certain this isn't 'just IBS'.
The qualitative difference between how I normally am and how I am when I have an 'episode' is so so pronounced that I know it's something definable and significantly adverse. But what?
I really can't face another 5 months of waiting to get better, with no treatment, no pain relief, no diagnosis. If I knew what it was and how I could prevent or control it, that would really help.