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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

I feel like I am just losing my mind!

78 replies

sometimescharlotte · 10/02/2020 01:55

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!!

OP posts:
AntoniaForestFan · 10/02/2020 02:24

(Not sure this is a true AIBU if I'm honest- but I guess I want to know if IABU thinking that there may be something wrong with me! My gut feeling is the this is Not Normal. But whether psychological in origin or not I can't say.)

bugbhaer · 10/02/2020 02:48

What general “good health” lifestyle changes have you tried?

sometimescharlotte · 10/02/2020 02:54

Healthy diet (5 a day, cutting out sugar / carbs, etc etc). Trying to make sure I get a healthy amount of sleep. Regular exercise, mindfulness, something called Progressive Muscle Relaxation which a nurse recommended to me, which I actually have found helpful.

But in terms of long term resolution, none of it seems to make a big difference!

OP posts:
sometimescharlotte · 10/02/2020 03:52

It is getting me down a bit. It isn't like that all the time, but it seems to flare up every few months or so. I was wondering if it might be IBS or something?

OP posts:
thetwinkletoescollective · 10/02/2020 04:07

Are you on the mirena coil? I had all those symptoms and had it removed and I am much better.

Or, what are the lights like in your place of work? Strip lights trigger my migraines.

I would suggest thought that you follow an elimination diet. I followed The Plan by Lynn Geddes (the original is more straightforward than her updated version) as that also gave me a chance to heal and now I can eat anything again but for a long time my body was very sensitive to almost everything.

sometimescharlotte · 10/02/2020 04:12

Thanks for the suggestions! I'm not on the Mirena coil and I don't think work lights are a problem, but I will look at the diet plan you suggested. Kind of willing to try anything at this stage!!

OP posts:
mnthrowaway202020 · 10/02/2020 04:14

Do you take any other medication?

When you say you tried to make lifestyle changes, how long did you stick with them?

I think the urine sounds a bit concerning but I’m not a medical professional. Google suggests dehydration or diet as common causes with rare causes being listed here

www.mayoclinic.org/diseases-conditions/urine-color/symptoms-causes/syc-20367333

mnthrowaway202020 · 10/02/2020 04:15

Also have you had any blood tests taken?

Seeingadistance · 10/02/2020 04:16

It sounds like acute porphyria to me. I’m not a medical professional but read up on this a few years back.

britishlivertrust.org.uk/information-and-support/living-with-a-liver-condition/liver-conditions/porphyria/

These are the symptoms.

anxiety, restlessness and insomnia
severe abdominal pain
pain in your arms, legs or back
vomiting and constipation
high blood pressure (hypertension)
muscle pain, tingling, numbness, weakness or paralysis
confusion, hallucinations and seizures
breathing difficulties (respiratory paralysis), possibly requiring ventilation
reddish coloured urine.

Flagg · 10/02/2020 04:19

Porphyria?

Seeingadistance · 10/02/2020 04:19

Skin sensitivity to sunlight is another symptom.

Flagg · 10/02/2020 04:19

X-post!

sometimescharlotte · 10/02/2020 04:24

Wow! Okay, definitely something to look at... I don't have high blood pressure though, low, if anything. But it might be worth discussing with the GP? It sounds rare though.

Side thought: isn't this what Mary Queen of Scots was said to have had?

OP posts:
resisterpersister · 10/02/2020 04:25

No you are not imagining it.

Did you know, doctors are much more likely to tell women that we're imagining it than men?

Men are much more likely to be taken seriously, women are much more likely to be fobbed off. Men are even believed more than women about pain.

Please, don't let your doctor fob you off. They don't know what's wrong with you. That's not the same thing as it being psychological. If the psychiatrist says that's not the cause, I'd believe them as a specialist, over your GP.

General practitioners are just that - generalists. They're not specialists. If you're got something unusual they GP may have no knowledge of it. And it sounds like yours has given up trying with you.

You're doing the right thing to research it online.

Maybe change your GP also, I would.

What tests or investigations has your GP carried out? What were the outcomes?

sometimescharlotte · 10/02/2020 04:31

They have to be fair investigated quite a bit.

Abdominal / pelvic ultrasound = normal
ECG - some tachycardia episodes but otherwise normal
Bloods - some inflammation markers raised a bit and things, ANA+, otherwise normal.

OP posts:
Seeingadistance · 10/02/2020 04:32

I don’t think you need to have all the symptoms for a diagnosis. You do seem to have most of them though.

Also, because it is rare, and apparently more common in women, it seems that sufferers are frequently told that it is a psychological problem. So that fits too, unfortunately!

resisterpersister · 10/02/2020 04:35

Some reading for you...

Why don't doctors trust women? Because they don't know much about us

The medical community have known for a century that women are living in constant pain. They’ve done nothing about it

It’s frustrating to have questions that don’t get answered. It’s altogether disturbing to find out that those questions haven’t even been asked.

When I was diagnosed with endometriosis at age 23, I didn’t know enough to ask the right questions. I assumed my gynaecologist had all the answers, and listened carefully to his thoughtful explanations. I thought I knew it all. Or at least that he knew it all. But I was wrong.

It was only after more than a decade of feeling weak, second-rate, wimpy and writing myself off as a hypochondriac that I started to formulate the questions that needed to be asked. This time the questions weren’t about what was happening to my body. They were about how there could possibly be such a lack of knowledge about a disease that has been in the medical textbooks for more than a century.

'I'm not a hypochondriac. I have a disease. All these things that are wrong with me are real, they are endometriosis'

A century of diagnosis and medical science still has no idea what causes endometriosis or how it works, and we are no closer to a cure. How could this possibly be? And while there are many doctors working in the field who are making a huge difference to the lives of people with endometriosis, there are many more who remain ignorant of the disease, who still push tired old myths about its cures, and who treat people with the disease as hysterical.

Not long after I started looking into this I discovered the problem was worse than I even imagined. As I write in my book, Pain and Prejudice, women wait longer for pain medication than men, wait longer to be diagnosed with cancer, are more likely to have their physical symptoms ascribed to mental health issues, are more likely to have their heart disease misdiagnosed or to become disabled after a stroke, and are more likely to suffer illnesses ignored or denied by the medical profession.

Most shockingly of all, many women are living in constant pain and don’t know that it’s not normal; they don’t appreciate that they don’t have to live like that at all.

Why don’t doctors trust us? The answer turns out to be quite simple. They don’t really know much about us

I discovered that there are 10 chronic pain conditions that predominantly affect women which have very similar symptoms; and that once a person has one, they’re more likely to accumulate others. Endometriosis, fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, painful bladder syndrome, migraine headache, chronic tension-type headache, temporomandibular joint disorders, chronic lower back pain and vulvodynia affect at least 50 million US women alone.

I discovered that some of these pain conditions have a high rate of co-occurrence with autoimmune conditions including rheumatoid arthritis, lupus, Sjogren’s syndrome and thyroid diseases.

You know what else I discovered? That these conditions are all beset by delayed diagnosis; that a high proportion of women and gender-diverse people eventually diagnosed with these conditions will first be told they have a mental health condition, or are too concerned about their health.

You know what else I discovered? That many of these conditions can be well-managed if caught early.

Why are women still being treated as hysterical, overly emotional, anxious and unreliable witnesses to their own wellbeing?

Why do doctors still treat their patients who are female, people of colour or gender-diverse differently to their white male patients?

Why don’t they trust us?

The answer turns out to be quite simple. They don’t really know much about us.

From this article - more here: www.theguardian.com/books/2019/sep/02/why-dont-doctors-trust-women-because-they-dont-know-much-about-us

resisterpersister · 10/02/2020 04:37

And some more links - warning this stuff may make you angry if it's news to you!

Women with chronic pain may suffer more and longer than men

Consider this: women in pain are much more likely than men to receive prescriptions for sedatives, rather than pain medication, for their ailments.

One study even showed women who received coronary bypass surgery were only half as likely to be prescribed painkillers, as compared to men who had undergone the same procedure. We wait an average of 65 minutes before receiving an analgesic for acute abdominal pain in the ER in the United States, while men wait only 49 minutes

From this article: www.health.harvard.edu/blog/women-and-pain-disparities-in-experience-and-treatment-2017100912562

In a similar vein:

The inequality in how women are treated for pain

How sexist stereotypes mean doctors ignore womens pain

sometimescharlotte · 10/02/2020 04:39

I'm definitely going to read this up! Thanks for the suggestion.
I would say I started to have these "episodes" mildly at 17 or so, but it has been worse - more severe and more frequent - over the last year.

The thing that throws me off is that the stomach pain is so debilitating - like, can't do anything kind of debilitating. And I get some weird things going on, like yesterday morning my limbs felt so weak and heavy that I couldn't move them. It was a bit freaky.

And at the same time, I do get very anxious and panicky and tearful when this happens. And this is not so normal for me! It could be anxiety, which is then causing these problems. Or it could be a reaction to them. I'm not sure

OP posts:
resisterpersister · 10/02/2020 04:42

Let's start from the assumption it's not anxiety.

Does anxiety cause orange urine?

Jossina · 10/02/2020 04:45

It was George III, the "Mad" King who had porphyria.

sometimescharlotte · 10/02/2020 04:45

According to my GP, anxiety can cause everything..!

OP posts:
Jakkipu · 10/02/2020 04:50

Couple of things I have to offer...
ANA can provide false negative results but never a false positive. Ask for another. Try and do it when you are feeling rubbish because that will usually increase the white blood cell count that you need for diagnosis.
Next, try and change your GP. I'd be asking for a brain MRI to rule out MS.
Lastly, look up functional neurological disorder. Don't be put off by the terms 'psychological' or 'conversion disorder' it has been proven to not be that although a lot of GPs didn't seem to get the memo.

For support : I have spent YEARS trying to find out what is wrong with me. I was labelled with health anxiety and only 6 months ago it was discovered by accident that I have 2 types of anaemia. My new GP didn't let this go and has had my back. Neurologist in May (only taken 12 years) and regularly checks in with me.
I can't stress how much my previous GP fucked my head up by diagnosing health anxiety. Everytime I had severed fatigue, pain or seizures I would be in some dark fucked up place asking myself if I was making it up. That GP now keeps trying to change my appointments back to him. Almost like he refuses to be proved wrong.
I don't allow it though. When he rings and says he wants to see me I say I prefer my new GP as she is following my journey and wants to see it through. I would love to say a lot more to him but as he is the senior GP and uts taken so fucking long to finally get somewhere, I don't want him putting my relation with new GP at risk.

I hope you get some answers. That is the worst thing about chronic unexplained illness. Feels like you're banging your head against a brick wall over and over.

TheBewildernessisWeetabix · 10/02/2020 04:55

It is the orange urine that is the great big warning flag for renal problems. No proper doctor would dismiss that as all in your head.
Get a second opinion. Gallstones is another possibility with symptoms as described.

Jakkipu · 10/02/2020 05:13

@thebewildernessisweetabix
Yes!
OP what colour is your poo?
Also, where is your abdominal pain and what kind of pain is it? (I know it's hard to explain that)