Can anyone at all diagnose me - anyone? At wit's end!

[Whoremoan]

For 3 months I've been really really ill with the same symptoms I had - lasting 4 to 6 months - 2 years ago but then recovered. It's the same profile exactly as last time and the same tests were done and the same conditions ruled out. I'm losing all faith in the medical profession and so am turning to MN wisdom as a last chance.

Here are my symptoms: It starts - each episode - with urgent need for diarrhoea in the middle of the night and severe localised lower left sided abdominal pain like a red hot spear in my side. This isn't like cramp or spasms or wind - just a sharp, hot 'infection'-like pain.

It goes along with incredibly bad flu-like symptoms - burning intense pain (not muscular but sort of inside the spine) at the base and top of my spine that's so bad I need to lie down, as it hurts to support my back, even sitting up. No respiratory issues though.

I'm icy cold and shivery but have no really high temperature but sometimes hot sweats along with the abdominal and spinal pain waking me from deep sleep in the night.

I feel extremely nauseous for about 5 weeks, lose a stone in weight, have a very bitter taste in my mouth, white tongue, mouth sores and herpes type sores on my lips. My eyes are too dry to wear contact lenses.

After about 7 weeks, the abdominal pain is less bad and now feels like a clearer, cleaner sharp needle type pain - no longer burning hot, infected feeling. Bowels seem more normal and sometimes even don't 'go' for a few days at a time.

Pain is always worse after a poo and often relieved if I eat and haven't 'gone' for a few days.

However, the pain at the base and top of my spine remain really really bad as does the flu-like feeling of exhaustion and 'yukky' grotty, weak feeling. If I try to ignore it or push through it, all the symptoms get worse. Rest helps but don't really have the kind of life where I can easily rest.

Stomach pain is now more like a dragging, tugging feeling most of the time but no longer so unbearable and acute.

The only time in my life I've ever felt like this and for this long is 2 years ago when the same symptoms developed then and it took about 6 months for me to feel anything like normal - but after this, I was fit, healthy and well for 14 months - except for some IBS type symptom.

Can anyone at all suggest a diagnosis?

Is your temp raised when you have night sweats or do you just feel hot?
Write down your weights when you lose so your GP can see the numbers.
Has a doctor examined you when you are unwell and has anything been abnormal on their examination? Any abnormally swollen glands? Anything with your back when it is so painful?
Have any of your blood tests been abnormal apart from calprotectin? Your inflammatory/ infection markers crp and ESR? Your blood count fbc?
Have you been in contact with any odd infections eg TB?

Autoimmune seems a sensible next step, I'd return to your GP and explain you have a family history of autoimmune conditions, they may recommend seeing a Rheumatologist. Also next time you are unwell see your GP so they can examine you.

Clairethewitch, I was at first sure it was a bowel abcess or diverticulitis as it felt so similar to what I'd read about these but the consultant said he couldn't see any sign of diverticular or anything at all.

Buster, it also feels like Crohn's but again the consultant ruled this out as there were no markers of inflammation in my blood tests or from what he saw visually - only the high faecal calprotectin level which he dismssed, as there were no other markers of inflammation to back this up.

Endofthelinefinally, this time round I paid almost £4K - all my savings, to get seen again by the consultant quickly - although there was still a 3 week wait till the flexible sigmoidoscopy. The first 'episode' they 'fast tracked me in the NHS as I had red flag symptoms but this time I went straight back to the consultant privately to speed things up.

Anyway, I don't think he's got me any further forward except to reconfirm there's nothing of note that is visible in my digestive system. Yet I'm still incredibly ill. He told me I'd get better now I knew he'd found nothing bad but i already suspected he might not see anything again as this happened last time and I don't feel massive relief. I never thought I'd have cancer, as I had over a year feeling really well after the first episode. So it felt like a recurrent, episodic illness not an immediately life-threatening one.

Anyway, I really don't feel completely better now he's told me I should be better. I don't have diarrhoea at present but the other symptoms are still there and on some days, worse than before.

Redannie, is an autoimmune cluster a recognised disease/illness? It sounds also like what I might have. I will ask the GP to refer me to a rheumatologist. By the time I might get seen if the 'flare' dies down, might nothing of note again be found? Do markers of inflammation wax and wane so you may be tested at a time when you're not showing any signs but then it might show up if tested again?

Collymolly, diveticulitis was ruled out as my consultant saw no diverticula during the flexible sigmoidoscopy and nothing showed up on the CT scan either. Would that definitely rule it out or might he just not have been looking in the right places or interpreting what he saw correctly - especially if it's not yet a massive diverticula? My GP thought it might be diverticulitis from my clinical description but the consultant has written that there's no sign of this. So I feel I've reached a dead end.

Hopelessly, my temperature hasn't really been raised, although my 'normal' temp has always been very low and so for me 37.2C is 'raised' by comparison. But actually, if anything it's been very low sometimes when I'm shivery in the night. During the first episode, a GP did find I had a slightly raised temperature but no one thought anything of this.

None of the blood tests showed anything bad. Not sure if there were any borderline ones as I've not actually seen the report this time. The first time, 2 years ago, there were some weird things with sodium an potassium but I was told this was just due to a time lag in getting the blood to the lab.

No hand'on examination has come up with any weird lump or bump in my abdomen - which is what's been examined. After the first 'episode' 2 yrs ago, I tried not to go back to the GP at all as I felt humiliated thatnothing had been found and so I was told it was 'just IBS'. I had no follow-up and just put myself on a low fodmap diet with no help or support and became an expert at ignoring any continuing pain or symptoms.

I've never liked going to the GPs as have rarely needed to go throughout my entire life. It also takes ages to get an appointment, by which time some of the worst symptoms have diminished and also, at the height of the illness, I'm literally too ill to get to the GP. In fact at the worst times - during both episodes, I've been so scared of how ill I feel that I've actually thought I needed to go to hospital. It really has been that bad and I'd never go to hospital if i could help it.

It's been so difficult for my DCs as they don't know what's wrong with me and I'm all they've got. So I've tried to hide being ill from them but they've had to know what to do if I completely collapsed and Christmas was utterly ruined for them (spent just with me) , as I spent the day lying on the bathroom floor, either going to the loo with diarrhoea or needing to shower after each poo!

For their sake as much if not more than my own, I need to get better. I just can't afford to keep having 6 moths of massively debilitating illness every year. We're solely reliant on my self-employed income and I HAVE to be OK.

Enough of the rant. I'll see the GP on Monday (booked a double appointment). I'm worried he'll say, "as the consultant says you're better and has ruled everything out, just go away and you'll soon be well again." It's almost 3 months so far this time, and I'm nothing like well at all.

I really think it may be PFAPA which I had

Interesting about sodium and potassium - When the adrenal glands become underactive, they tend to produce inadequate amounts of all of the adrenal hormones. Thus, Addison disease affects the balance of water, sodium, and potassium in the body, as well as the body’s ability to control blood pressure and react to stress. In addition, loss of androgens, such as dehydroepiandrosterone (DHEA), may cause a loss of body hair in women.

Yesterday, i decided to push back against feeling so ill, as i was so fed up after 3 months. I did a bit of gardening.....and oh boy have I paid for it! By yesterday evening, I had a high temperature and worse lower and upper spine pain - not the sort you get in the muscles after gardening - but this deep, hot, burning type pain inside. I feel totally dreadful today and have been stuck in bed. I now seem also to have a nasty chesty cough but I don't think this is related to the undiagnosed, underlying condition, as DCs also have had this virus.

Would a 'functional bowel disorder' - the label the consultant gave me - really produce this level of illness, where I can barely get out of bed and am in such pain in my spine?

I'm so used to fighting through other ordinary illnesses and convinced myself that i could do the same this time. But it seems that pushing back against it has made me much worse. I'm now full of hot and cold shivers and my temperature is hovering around 37.8C which isn't desperately high except that my normal temperature has always been around 36.5C.

Do people get high temperatures and spinal pain and flu-like feelings with IBS?

Not sure how I'm going to make it into the GP surgery on Monday, let alone work but I hope he can come up with something helpful. Any further possible diagnosis ideas from MN still much appreciated.

I think auto immune as well. The pain and diahorrea is very similar to what my mum gets with diverticulitis.
Some of your symptons match mine, I have Lupus, I get bowel and stomach problems when I'm in a flare.

My blood test results from a few weeks ago all came back as normal. Wouldn't something show up in them? It's like no one so far can find any objective markers of something wrong but meanwhile, I'm no better and some symptoms are worse.

How can I get my GP to explore things further if all tests so far have proved normal?

I have a diagnosis on symptons alone, definitely push for a rheumatology referral.

Cocolepew I hope you don't mind, I've sent you a pm.

Ive sent you a ridiculously long and rambling reply

Coco, I'll push for a rheumotology referral. Thanks for that advice. I'm feeling worse again, with more nausea, loss of appetite, more left sided localised pain and now another area on my spine that's so so painful if i press it, it's as if there's a boiling hot volcano in there!

I've rested most of today but feel exhausted and so so sick and ill. My upper and lower spine are incredibly sore still, along with this new localised area a few inches above the base of my spine.

My temperature is up again. I've got loads of white mucous when i have a bm (and these are all stringy and ribbony and undigested like poo!!) and after a bm, the localised lower left side pain is so much worse.

It's getting tougher and tougher for my DCs who can't understand why I'm more ill rather than better after 3 months and still without a proper diagnosis or any treatment. I'd give anything in the world to be better for their sakes. I'm all they've got and have ever had and how I am affects them so much. I can't keep pretending to them I'm OK when I feel more sick and feverish right now so I've had to come away from them so they don't see how ill I am.

I agree, ask for a referral to a rheumatologist and maybe scans on where you hurt.

I am undiagnosed but being treated, given me my life back.

Cheesecadet, what are you being treated for and how has it helped? Is it similar symptoms to me?

I had a CT scan and nothing bad was shown at all. I can't understand why I'm in so much localised pain if there's neither anything on a CT scan nor visible through a flexible sigmoidoscopy.

The pain is SO bad again tonight and it's not at all like IBS spasms or blocked wind or cramps. It's a sharp, acute, very specific pain in my lower left side.

Hiya. I had an endometriotic cyst on my ovary which ruptured and I ended up having to have emergency abdominal surgery. The symptoms were quite similar: woken up with shooting pains in left side (cyst was on left side), really painful gut and diahorrea (no idea why at the time - explained later if you carry on reading), raging temperature at certain times of the month, fatigue and nausea. Basically, as the cyst grew I had blood leaking around in my abdominal cavity causing all of those symptoms, I now think this was happening gradually over about 12 months. Because in my case the cyst got so large that when it ruptured I had to have emergency surgery as I was developing peritonitis, it was operated on and then condition treated and never happened again. Some people's endometriotic cysts rupture without requiring surgery. Perhaps you should have a scan of your ovaries or explore this possibility further. Can you see any connection with your monthly cycle in all of this?

Forgot to add I also had severe back pain.

Look at psoriatic arthritis and anklosing spondylytis, honestly a rheumatologist is necessary given your symptoms and fault history. NASS website is excellent and arthritis research uk. Lots of these conditions are seronegative ie.inflammation doesn't show on blood tests esr crp etc. Also almost universally misunderstood by gps :(

Crohns is very hard to diagnose. I am not going to repeat everything buster has said but I mirror all those symptoms too. I have a bag as I have short bowel too and am seen at the specialist bowel hospital at st marks in Harrow.
Unfortunately I have a gist under my bag... and it's huge.
Ask for a second opinion. I did for surgery. Auto immune illnesses are awful to manage and I don't even feel like 'me' anymore I have been ill for so long.
Sending hugs.

Lucky, that's really helpful. The consultant actually mentioned maybe I should have an ultrasound of my ovaries but for some unfathomable reason, abruptly changed his mind, saying the clear CT scan would have shown up something and hadn't - so no need to have one.

There doesn't seem to be a link with my monthly cycle but then i don't have regular periods these days as I'm perimenopausal - at 53 - and have them on average every 3 months. I did start a period just as the symptoms began 3 months ago (the last period since then) and currently, I know my oestrogen is high or I'm at the ovulation time of the cycle as I can tell from bodily signs. But across the last 2 years, I can't see a pattern between cycle and symptoms.

Does anyone know just exactly how accurate a CT scan is? Can things be missed? It was apparently totally normal. But could there be things that you just can't see on them?

Sickofthinking, thanks for your input. I hope the GP is willing to refer me to a rheumatologist. There may be a 6 to 9 months waiting list however, even if he will.

Wannabe, sorry to hear about your life changing illness. I'm terrified that I'm not going to return to normal me as i NEED to be OK for my DCs sakes.

If you ask for a second opinion, don't doctors just then think you're a 'neurotic woman'? That's my fear and that's how i feel the consultant has thought of me, given he's not found anything structurally visible. I really dislike seeing doctors at all.

I agree with others, it sounds like a combination of different autoimmune conditions. Which is similar to what I have. It's not easy to get a diagnosis as often a flare has finished by the time you get to the doctor, plus no one looks at the problem holistically, every specialist is focused on their own bit of the body. What helped me was them finding a genetic marker as part of some blood tests (mine is called hla b27). They took me much more seriously once they knew there was something that made these conditions more likely. I know you say you've had blood tests, but worth clarifying if this is the sort of thing that they've looked for. Sorry you are going through this, sounds awful for you.

I'm being treated for lupus and it's helped tremendously with severe fatigue and pains.

I don't suffer with the same bowel problems as you but there's obviously something going on with your flu like symptoms, fatigue and pains.

If you have a gut feeling about what it is, you could say to your GP or specialist "I think it is * could you try me with some treatment to see if it helps me".

One doctor in the past said to me "bloods don't always show us what is going on". That's when she referred me to a rheumatologist.

I saw my GP and I've now had another comprehensive set of blood tests and am waiting for results. Last time, all the blood tests were completely normal so I'm not sure if anything would show up this time. He's also referred me for an ultrasound scan on my pelvis, even though the previous CT scan came back as all clear.

I mentioned autoimmune diseases and ankylosing spondilitis particularly but he didn't take this up really at all. Because of my age, he's wondering about gynaecological issues, I think.

However, in the meantime, I'm still getting worse and have much worse nausea, diarrhoea/urgent need for the loo in the middle of the night and have lost even more weight. I have no appetite but am forcing myself to eat things like rice and chicken. I feel sick all the time, even in the middle of the night and my spine is sore.

It'll be another 2 weeks at least before i get the ultrasound done - even though I'm paying to have it done privately to speed things up. If nothing shows up on that or the repeat blood tests, I don't know what to do.

I also did another stool sample for faecal calprotectin testing, as this was the only test done 2 years ago that showed a raised level - indicating inflammation. However, the consultant didn't think the result meant anything as no other markers of inflammation showed up.

I feel so tired all the time and not being able to eat much, must be making this worse. It's scary to see my clothes falling off me and I'm also someone who usually has a very hearty appetite. I don't even want to eat chocolate or sweet things and that really does indicate my loss of appetite.

The dry eyes thing has also now come back and my eyes are so dry in the night that it's hard to open them when I wake.

What am I going to do? If no objective markers show up on these repeat tests, my GP isn't going to take things further. He's clearly convinced that there's nothing wrong with my bowel, as it was comprehensively looked at. But why am I therefore getting worse diarrhoea and pain and sickness feeling?

in the last 12 weeks, I can remember about 2 twenty minute periods when I wasn't in pain. I can't go on like this but I don't know what to do and I'm now in the midst of more waiting and testing and waiting for results and then for another GP appointment and then - well I don't even know what would come after that, if he won't countenance the idea of an autoimmune disease.

It 'feels' like Crohns or microscopic colitis but if no one can see any evidence of this, then I don't know what to do next.

You need a referral to rheumatology.
In your position I would make an appointment to see a different GP at the practice and insist that this is done. Or you could write a letter of complaint to the surgery detailing your symptoms and ending with a written request.
Plenty of people are diagnosed and treated for inflammatory autoimmune problems whilst seronegative, ie no raised inflammatory markers.
Your GP is being inadequate and your symptoms and their impact will, if they continue as they are, leave you malnourished and potentially needing hospitalisation. Sometimes they cannot see what is in front of them if it's something they only encounter once a year or so

Thanks for the support, MichaelSheen. It's really difficult to see an alternative GP as this one is my registered GP who's known me for 25 years and who's also followed the course of these 2 episodes. I think I'll have to wait until this lot of blood tests come back and the faecal calprotectin. I don't want to complain as I can see my GP is 'ticking off' things from a list of what can be investigated and presumably hasn't yet reached auto-immune. I'll suggest this again when I get the latest test results.

Does anyone know why blood tests may look entirely normal when you feel so desperately ill? If it's an autoimmune disease, how does the body 'mask' something that feels so so wrong, by continuing to show up normal levels of everything?

'Common sense' would suggest that 'nothing is badly wrong' if my blood counts are normal - yet tonight, I can barely sit upright, my spine is so so sore and I feel nauseous with stomach pain and my tongue has this 'off the scale' thick white coating. I'm pale and look as if I'm in the midst of the worst ever flu and feel like this also.

I tried to do a few basic tasks and the flu-like feeling increased exponentially, even though the tasks involved were enjoyable to me (usually) and even though one of my DCs had some good news tonight. I feel emotionally very happy for DC yet my body hasn't had any correspondent boost of health. In most normal illnesses, if you have a surge of happiness, you tend to feel at least a bit better physically - but that's not happening at all since I had this illness.

No one 'found' my crohns until my first resection and I had the symptoms on and off for over ten years...