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

Ankylosing spondylitis?

There is no test for peri as such OP, you d need a series of them over time as by its very nature the hormone levels fluctuate wildly from month to month. I had 6 tests done on day 3 of my period over a year as part of my diagnosis of premature ovarian failure (early menopause). My FSH the first month was 90 something, would be under ten in a pre menopausal woman, that's a postmenopausal result. My others were a couple under ten and rest over though not as high as the first, so if we d depended on just 1 random month it could have been under 10 and I could have been told everything was fine and normal when it very much wasn't.

I have fibro and my first thought was that. There’s about 200 different symptoms to it . It is one of those things that is diagnosised once everything else has been ruled out.

Id ask for a rheumatologist referral as they’ll look a fibro. But dont expect much of an attempt at fixing you. You tend to get told you have it and just get on with it. It’s frustrating as hell!

not time to read all the answers but underactive thyroid could be it...doesn't always show on tests either..but those are a lot of my symptoms or were

and I did get a fast heartbeat with it before on meds.. my levels swung in and out and still do at times, so it can happen with under, not just over

The tugging sensation in lower tummy on either side of your hips sounds like ovarian cysts. It's what I've got.

But tbh the ovarian cysts are themselves probably only a symptom of other issues i.e. hormone imbalance, inflammation.

Have you tried completely changing your diet? Cutting down all sources of inflammation, prioritising sleep, eating very nutrient sense unprocessed food etc.

I recommend all women read 'the 5th vital sign' by Lisa Hendrickson-Jack. It really goes into detail about proper nutrition for women during all phases of life.

If it is some kind of histamine issue/MCAS, it’s worth pointing out that what’s often considered a healthy diet that’s good for your gut (fruit and veg, fermented foods etc) can trigger a reaction.

i Empathise with you, OP, and hope you can get some answers soon.

your title says your GP thinks you’re crazy and several posters have advised you to change GP but you haven’t said what he or she has said, or done, to make you think they think badly of you.

GPs are often getting a bashing (and often rightly so) but this GP sounds like they’ve taken a really sensible approach of systematic testing, treating deficiencies, then reviewing treatments. It doesn’t sound as though the GP has dismissed any of your concerns. And has not been quick to throw a diagnosis of exclusion at you, presumably because they want to ensure all other possibles have been excluded. Unless there’s something you’re not telling us about your interactions with this GP, then I’d stick with this one because they’re clearly taking you seriously.

you have lots of good ideas from posters above, make a list and discuss with your GP at your next appointment. A good GP will either explain, with evidence, why/how they’ve ruled something out, or agree to further testing if not ruled out.

Your symptoms do sound auto-immune, and lots of these conditions can be difficult to diagnose because there isn’t always a specific test and the tests we do have can be negative even when you do have the condition. Diagnosis needs someone to look at the big picture of your symptoms and their progression/patterns, blood test results, and risk factors. In addition it can take years to develop the full gamet of symptoms that point to the specific syndrome you have.

To Add to the ideas from posters above, I would be inclined to ask for an early morning cortisol level. It certainly isn’t a first line test, but I think worth checking here.

Edit to add: don’t disregard stress as a cause, we do not know the depths of the intricacies of the connections between mind and body, and certainly stress can cause extreme physical illness. Aside from that, being proactive in managing stress will be massively beneficial even if it isn’t the primary cause of your symptoms. All the best.

Who is prescribing them for you? You can’t just give them yourself willynilly.

FND

Whenever I hear - Dr thinks I'm crazy I automatically think of Lyme disease.
If you've ever been bitten by a tick or live in an area prevalent, maybe worth a test?

Not that it’s any of your business but I have a nurse prescriber and you can also get none prescription B12

Good grief, did you not read what the pp said about her own condition? That was unnecessarily arsey.

You can have ANA negative lupus.

Perimenopause? Low ferritin? Other vitamin deficiencies? Thyroid/fibro/ME?

Sorry, I've not RTFT so I'm.sure PPs have probably mentioned all of these.

Also have a look at vasculitis. There's lots of different types. It won't necessarily show on blood tests. You need a referral to Rheum.

I haven't RTFT but another vote here for amitryptline, if GP will let you try it. You might feel a bit better on it even if it isn't definitely fibromyalgia.

Ovarian cyst?
I have had a few and currently have one. Main symptoms are tugging feeling/pain on sides of pelvis, backache, irregular periods and swollen tummy. All blood tests have always came back clear.
I’d recommend getting a private ultrasound if you don’t want to wait and have the spare cash. I got one done a few weeks ago (£150 with ultrasound direct). Scan showed an ovarian cyst and have been referred to gynaecologist. All the best. 🙂

This is why it is so frustrating when Streeting says things like "too many MH diagnosis" - yes, please treat us women for what is ACTUALLY WRONG and do proper investigations rather than shoving us on anti-depressants!

Any trigger before this started?

Can they check further on possible autoimmune issues. RF and ANA are the initial blood tests. Also ask to see the results in case you are close to the limits.

Have you tried cutting things out of your diet?
We have been getting really bad fatigue and lots of the symtoms you have. My husband made us try a diet whichbainwas reluctant to do.
We upped our protein intake, lots of eggs and meat. Cut out processed foods, bread and carbs and sugar where we can. And upped our vegetable intake. Honestly saw a huge difference to everything. My husbands IBS has all but disapeared, energy levels up etc.
If you havent tried it then would advise. I felt human again after a year of feeling terrible.
You may have a condition on top but you might be able to alleviate your symptoms to an extent, its worth a try.

If this started after a bout of Covid, maybe its worth asking for a referral to the local Long Covid clinic? I had many similar symptoms, had just about every test going, inlcuding various cancer investigations, and in the end, the general consensus was long Covid. That was a year ago, and I'm still here, and was feeling much better following different types of physio. I tested positive for Covid again on Monday, and have been really unwell this week, so am waiting to see if the symptoms all start up again.

Your thread title is rather misleading.... your GP obviously doesn't think you're crazy as you have been thoroughly investigated.

Fibromyalgia is a diagnosis by exclusion and usually only made by specialist teams such as rheumatology once all other conditions have been excluded. It's largely true that there isn't any treatment, just management by lifestyle changes.

Regarding vitamin injections they're rarely needed if your gut is normal as oral intake at the right dose for the right length of time will improve levels. Places offering B12 injections are largely a money making enterprise based off making people (usually women) believe they are deficient in something. All they do is give you very expensive urine.

"I have a nurse prescriber" - she's risking her PIN if she prescribes you something "as a mate" and not in any sort of clinical capacity.

I do laugh at all these posts that say "ask for this test" and "demand an MRI/scan/blood test" or whatever. Your GP is not a Woolworths pic'n'mix counter. They're an experienced HCP with years of training who are constrained by secondary care referral criteria, must follow clinical guidance and should work with you in partnership to explore your health issues.

Yes and I have all of those symptoms she described so yes I may have it. I’ve never once said it was an official diagnosis so maybe re read what I’ve wrote instead of being in necessarily rude the pair of you