GP thinks I’m crazy!

[BexAubs20]

Ok so I’ve been having symptoms for years now and been tested for all kinds of things via bloods, stool and urine samples. The only thing that came back positive was low vitD which I’ve been taking daily for months and still don’t feel any better. I’ve got a tugging type sensation in my lower tummy either side of my hips as well as the following symptoms; Headache
Nausea
Severe back/ hip pain
Rash on face & under breast & chest & arm, back of knees on hips and eyes
Bowl issues
Dry sore bloodshot eyes with rash on eyelids
Phlegm
Depression
Anxiety
Fast/ irregular heartbeat
heavy, irregular periods 2 x per month
Pain under right side ribs
Heavy legs
Mouth ulcers
Bruise easily
Dry nose with scabs
Dry sore lips
Random body twitches
Toenails peeling off
Brittle fingernails
Dry hair
Twitch under right eye
Acotites- swollen tummy
Fatigue
Aching joints
I’m at my whits end! The fatigue is the worst. I’ve had to give up work. I wake up exhausted and I’m struggling to carry out daily tasks. Even climbing the stairs hurts! I’ve asked for a gyno referral but apart from that I think they have ruled out everything else. I’m 37 so poss peri menapause but the test they did came back negative for that too! Does anyone else have these symptoms and what was your diagnosis? Thanks

I assume they’ve tested for thyroid issues and celiac disease.

What are your ferritin and iron levels?

Yes both negative 😫I’ve got the weight gain too so I was convinced thyroid issue but apparently not. They did a stool sample and ruled out chrones, celiac and bowl cancer

Normal apparently but I take spartone iron water anyway as I do suffer from anemia on and off throughout my life

Fibromylagia?

That’s what I’m thinking. I mentioned this to the doctor last time and he said “yes all your symptoms could be explained by fibromyalgia and the fact we have ruled most things out would indicate this, but most symptoms could also be explained by low vitD” it was borderline anyway not even low but he wanted me to wait 6-8wks of taking the vit D before giving a diagnosis. He also said “you won’t gain anything from a diagnosis of fibromyalgia as there is no treatment”

Acotites- swollen tumm
Do you mean ascites?
Have you been diagnosed with this?
It's an incredibly serious condition and needs urgent treatment

Have you also seen the blood test results? My GP failed to notice low B12, Vit D, Folate and Ferritin because they were all on the line - the boundaries are subjective. I would see what is obviously low and get injections - I had a vit D injection and it made quite a big difference and you can pay for B12 at some pharmacies.

Why does he think you are crazy? He has sent you for tests, and said that it could be fibromyalgia. Sounds rubbish for you though - hope you feel better.

Do you have your results from the thyroid test ? How long ago was that tested

Yes but what exactly are they? I only ask because I know some doctors get this wrong.

Trial of vitamin D is very sensible as fibromyalgia is currently a diagnosis of exclusion.
However you mention ascites - that would not be explained by either condition or perimenopause - do you actually have ascites and has the cause been identified?
If vitamin D normal GP might consider referral to rheumatology to confirm diagnosis fibro as the nail and eye symptoms are less common.
Your title says the GP thinks you’re mad but you haven’t expanded on that?

I read your list and it reminded me of my list before my Fibro diagnosis. As in, a lot of potentially minor irritating conditions, combined with aches and pains and fatigue. You just don’t know which irritating minor symptoms could be important for a diagnosis.

He’s not wrong about treatment and diagnosis, though I found being on a low dose of amitriptyline or Nortriptyline hugely helpful.

The most important thing is pacing and self care. Pacing isn’t having a rest after a strenuous day, it’s never having a strenuous day.

So treat yourself like a baby- regular food, sleep, naps, exercise. Steady routine. Avoid stress (including excitement). Be nice to yourself- when something hurts, pay attention but don’t get hung up on it.

Happy to talk more if you’d find it helpful.

I was wondering that. Ascites is a sign of life threatening conditions.

OP have you researched MCAS? Someone I know has been diagnosed with it after 4 years of awful ill-health (similar broad range of symptoms). Since starting treatment, they've finally got their life back.

You need a new GP, there are quite a few treatments for fibromyalgia, they don't work for everyone but their are a few treatments. I don't think your pain sounds wide spread enough though. Wide spread pain on both sides of the body and above and below the waist is the defining characteristic. There are other chronic pain syndromes, something like chronic fatigue or one of the auto immune could be a possibility to.

No not diagnosed probably not that just swollen tummy sorry

You need to ask to see the results. NHS thresholds are high compared to other countries.

Are you only taking vitamin D? E.g. for brittle nails and hair I'd take calcium and vitamin C. Vit C will also help with iron absorption.

Probably not that sorry just swollen tummy on and off

I’ve heard of that I’ll look into it more thanks

Lupus or sjorens. Both autoimmune and notoriously hard to diagnose.

They are all on my NHS app. I take spartone iron water with added vit C, 1 x multivitamin gummy and 1 x vit D & k2

I thought autoimmune but all came back normal 😧

Sjögren’s syndrome might be worth a look. My husband had a lot of your symptoms and that’s what it turned out to be. It’s more common in women than in men.

My first thought was lupus.

My first thought was lupus.

I am qualified in vitamin injections myself so I could give myself them but it’s dangerous to inject vitamin D if you have been taking a supplement as it’s a fat soluble vitamin