I feel like I am just losing my mind!

[sometimescharlotte]

Posting here for answers is clearly desperation, but I am willing to try anything at this point! Maybe somebody with a similar experience will magically be able to point me in the right direction... or maybe it will confirm that I am a neurotic hypochondriac!

For the last year or so, I've been going through phases of feeling unwell. The symptoms all happen together, more or less the same every time:

Stomach pain - usually quite bad
Headaches - again, quite bad
Pain in arms and legs - muscles, joints
Vomiting and diarrhoea, sometimes sort of orange-red coloured urine (sorry tmi!!)
Feeling tired and very "weak", sometimes almost like I can't move when I try to
In the summer - itchy rashes from the sunlight
Feeling anxious - which may be a cause or an effect of all the above!

My GP has found nothing abnormal and suggests the symptoms are psychosomatic or psychological in origin. I'm willing to go with that.. but am unsure how to deal with it. Plus, when I then had a psychiatric assessment, I was told that there is no reason to think that this is the case.

So... anyone have any ideas? Or am I just neurotic? Happy to be told that I just sound a bit loopy, at least it would be an answer!!

Coeliac disease?

Those symptoms look very similar to fibromyalgia. I went to a fibromyalgia group recently, which was really interesting regarding symptoms etc
maybe have a chat with your gp and see what they think?

Have you ever taken in a sample of the urine when it is very red, plonked in front of said GP and asked if he thinks it’s normal?

Also. Yes. CHANGE THE GP YOU ARE SEEING.

I would ask your GP practice to at least give you sample pots so you can take urine samples at home to be sent off for analysis.

Apparently I don't meet diagnostic criteria for fibromyalgia, although I've wondered about that one. I did have a blood test for coeliac which was negative. Not sure about hyper mobility either, because I don't really have an issue with sprains, injuries, etc.

The urine sample is a good idea!

I've called 111 as suggested and I'm waiting for a call back now.

Sorry I'm being a bit unreceptive and ungrateful. Especially when you have all been so helpful with the ideas and sympathetic as well, which I feel is more than I deserve! I decided to go into work this afternoon and it was a mistake. The stomach ache is making me miserable and I had some "toilet trouble" on the way home (needed to go really badly, couldn't find a loo and had a bit of an accident...sorry tmi!). And I just feel a bit drained and achey and I'm fed up with it! Moan over...!

@sometimescharlotte
You have symptoms of porphyria
www.mayoclinic.org/diseases-conditions/porphyria/symptoms-causes/syc-20356066

I am so sorry. It took me three years to get my doctor to take my persistent dry cough complaints seriously and send me for tests. Suddenly it was an emergency because cancer don'tcha know and surgery was scheduled in less than a week. The nerve damage never healed.
You know there is something wrong and you owe it to yourself to pursue finding the source of the illness.

Got an out of hours appointment for tomorrow evening at the hospital - some progress, at least!

This might sound gross but you could take photos of any bright red (or strangely coloured) urine if you pass any, to show at your appointment tomorrow as a point of reference. You could also google for photos of the general colour too I suppose

Worth taking a urine specimen with you, particularly of red urine. You can buy tubes at the chemist if you don’t have anything to put it in.

How often have you seen the GP for this? I would have expected at least I don’t know, twenty appointments before they started refusing you.

I would consider a new GP, but if that’s not possible, definitely see the GP you felt had taken you seriously. Frankly, if necessary, I’d tell the receptionist it’s a mental health issue in order to get an appointment.
After all, that’s what they’ve told you, no?

Good idea about the sample, I will go to the chemist.
I'm not sure how many doctor's appts I had for this, but I'd think it is definitely under 10. Something between 5 and 10?

I was also going to suggest that some of these symptoms sound very much like fibromyalgia.

Fingers crossed for you tonight. Keep us updated, we're here to support.

Thank you! I'm just really scared they are also going to say, it's nothing, all in your head, etc!

The doctor was quite kind, but she basically said there isn't really anything she could do. She thought it could be something like fibromyalgia or IBS, but you can't diagnose those until all investigations are done and they rule everything else out. She said I should go back to my GP, but I feel like I can't. And it will probably be the same anywhere I go, so I feel a bit like, what's the point? Maybe it's just time to accept that this is the way the things are...

No don't accept it @sometimescharlotte! I really feel for you, it's awful having physical symptoms which noone takes seriously. I would get a second opinion, if the receptionist won't let you see a different GP then register elsewhere. I don't understand why the receptionist isn't allowing you to make appointments in the first place . You just need one GP who will look at things as a big picture. It's not right that you feel as unwell as you do

Have they tested for Porphyria? It wouldn't show up in normal tests and can cause similar symptoms to yours

The symptoms can include:

Belly pain, often severe
Chest pain
Faster heart rate and higher blood pressure
Limb and back pain
Muscle weakness
Tingling and loss of sensation
Cramping
Vomiting and constipation
You may notice changes in your personality or you may get depression or other mental disorders. You could also feel agitated, confused, or get seizures.

My mum has this and it took years to diagbose

If you plan to take a sample of your urine to the GP, to test for Porphyria then it has to be immediately kept in the dark, as sunlight affects it and it is not detectable.

Have you done a FODMAP diet? It's a very systematic way of removing foods and then reintroducing them. Also have they ruled out auto immune reactions?

Definitely take the urine in. They can't dispute that! I feel for you as I ve been labelled as having anxiety at my GP surgery, so it wouldn't matter if I went in with my foot in a basket , they'd say it was anxiety!
Seriously though, have they tested your thyroid? And for it's antibodies?
I have a multidude of similar symptoms that are thyroid/fibromyalgia/menopause /gybae/allergy/tics which have all been individually diagnosed but they'll still get out that bloody anxiety questionnaire!!! It's usually only 'Mild' anxiety, but as I always explain, they'd be feeling a but fecking anxious with all that going on!!
Don't be put off. Keep going. Drop in the urine... In the morning. Is there a complaints procedure?
Alternatively you might have used up their 'budget' for referrals so they are fobbing you off.

Urgh this makes me so cross for you. Of course there is something wrong with you! I've had similar experiences - it took two years for me to be diagnosed with coeliac disease when I was 20. So many trips to the GP summed up as 'of course you're tired with a dodgy stomach, you're a student and probably living on kebabs and alcohol' despite my emphatic assertions that that was not the case.

And even now, as a junior doctor myself, I'm struggling to get my GP to take seriously that I've had a persistent fever for six weeks plus numerous other symptoms. Every time I speak to someone they either send me for a repeat full blood count or tell me to 'give it a bit longer'. I do see it from their point of view but it's so frustrating when you know you should be taken seriously.

I don't have any advice - currently psyching myself up to phone and ask to be sent for specific blood tests which might help . Would agree with taking a sample of red urine in - that's hard to ignore!

Ended up going to A and E last night because the stomach pain was so bad. The doctor who saw me was adamant that I must have an eating disorder (a lot of "you're not helping yourself" kind of comments too). Apparently my bloods and ECG all showed things which would be consistent with an ED. But I am sure I don't have one! I'm afraid to say that I got in a bit of a huff ("you're very defensive") and left ("normal people don't behave like this"). Not a complete success, we can say...

Op, your first post mentioned cutting sugar and carbs, what does a typical days meals look like for you? I was adamant I didn’t have an ED til it nearly killed me.