Page 22 | GP thinks I’m crazy!

llizzie · 30/03/2025 16:16

BexAubs20 · 28/03/2025 12:19

Yes to xray and MRI on my upper/ torso when I was pregnant as went in with excruciating pain and had to be given strong pain meds

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Have you had a test for gallstones, kidney stones?

ftp · 30/03/2025 16:46

fallenangel10 has a good point. None of the tests that are normally given are gene testing, and they will be discounted if you did not have these symptoms as a child, but that is not always the case

confused9 · 30/03/2025 17:23

llizzie · 30/03/2025 15:50

Or you have an endoscopy and they take a biopsy to diagnose that and crohn's. Caeliac disease can be diagnosed by a withdrawal diet. You stop eating anything with wheat and gluten, milk and other things (I can't recall all of them) and gradually reintroduce foods. If you can tolerate them, fine, if you cannot you don't eat them.

I don't know how easy it is to see a dietician nowadays, but you can try yourself by not eating wheat and gluten and see if it makes a difference.

Crohn's is worse. It makes the intestines bleed. When I first had polymyalgia rheumatica I was very ill. My blood count was 50 instead of 8. My doctor came right away and said the only treatment was prednisolone, but if my insides were bleeding it would kill me, so I had to have all the endoscopies and scans again to make sure there wasn't any bleeding.

I was in nursing, yet I had never heard of any of the diseases I had, except the heart failure.

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Please be careful with this. An elimination diet cannot diagnose coeliac disease. It can only point to an intolerance OR coeliac. But if that is the case then you would have to go through a pretty miserable 6-8 weeks of eating gluten again before you could be properly tested for coeliac, it is important to get a proper diagnosis if it is coeliac as it can cause serious long term health problems with even a trace of gluten ingestion, A GP should be happy to run a diagnostic blood test for it if you ask specifically for it.

confused9 · 30/03/2025 17:31

I meant to add to my message above that coeliac disease isn’t the same as gluten intolerance. It is an autoimmune disease.

llizzie · 30/03/2025 17:49

confused9 · 30/03/2025 17:31

I meant to add to my message above that coeliac disease isn’t the same as gluten intolerance. It is an autoimmune disease.

Itis if you already have an autoimmune disease. Only a gasto-intestinal consultant can accurately diagnose caeliac disease and Crohn's, but there is nothing wrong in testing yourself for gluten and wheat intolerance, and lactose too.

If you leave those out of your diet and you feel better, then you have an allergy.

confused9 · 30/03/2025 17:53

Coeliac is very easily diagnosed with a blood test. It is the quickest and most accurate route to diagnosis. If the test is negative then you can do an elimination diet to check for intolerances.

Messycoo · 30/03/2025 18:31

Could you be perimenopause/ menopausal?
it’s sounds as though you are perhaps deficient in something.
as someone has mentioned thyroid check would be a good place to start .

IAmClemFandango · 30/03/2025 18:36

Platypuslover · 30/03/2025 12:38

You likely have a fatty liver too. Pain on right side under ribs sounds like it.

There is definitely something going on with the liver because of the previous occurrence of ascites.

Contraryjane · 30/03/2025 18:42

She hasn’t got ascites! Read the fucking thread!

ruethewhirl · 30/03/2025 19:55

Devora13 · 30/03/2025 12:47

What are people like, honestly?

-Check for basic etiquette; is your comment kind+helpful+necessary.

-If you don't like the OP response to your comment, move on. She is in a tough place and asking for advice. This isn't an invitation for keyboard warriors with chips on their shoulders to escalate their own agendas.

Move on.

Sorry alleged 'grown ups' need reminding of such social norms and niceties.

Have you RTFT? (as far as possible given some posts have been deleted).

Itsoneofthose · 30/03/2025 20:02

BexAubs20 · 28/03/2025 09:10

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 put your symptoms into chat gpt and this was its reply. obviously it’s not a health professional and please don’t take it as fact-
That sounds really challenging, and I’m sorry you’re experiencing so many symptoms. While I’m not a doctor, your symptoms sound like they could be related to an autoimmune disorder, liver issues, or a connective tissue disease. Conditions like lupus, rheumatoid arthritis, or even something related to your thyroid or liver function could present with a combination of joint pain, rashes, fatigue, gastrointestinal issues, and nail changes.

Given the wide range of symptoms, it might be helpful to see a healthcare professional who can run a comprehensive panel of blood tests, including liver function, autoimmune markers (like ANA), inflammatory markers (like CRP and ESR), and thyroid function tests. You may also want to see a dermatologist for the rashes and an ophthalmologist for the eye symptoms.

Have you been able to see a healthcare professional about these symptoms yet? Let me know if you’d like help preparing for an appointment or understanding what tests to ask for.

Elicitcoffee · 31/03/2025 07:26

How are you managing financially with 4 children as a single parent not working, and presumably no disability benefits given no diagnosis of anything at all (yes I know diagnosis isn’t necessarily a requirement but I’d be very surprised if the op received disability benefits when the GP seems unwilling to agree with (and in fact doubtful) her about the severity of her symptoms

Fallenangel10 · 31/03/2025 09:33

ftp · 30/03/2025 16:46

fallenangel10 has a good point. None of the tests that are normally given are gene testing, and they will be discounted if you did not have these symptoms as a child, but that is not always the case

Also need to remember that hypermobility Elhers-Danlos does not show in genetic testing it is the only one that doesn't hence why it took me so long to be diagnosed.

BeCloud · 31/03/2025 09:52

I'm so sorry you have all these symptoms and don't feel like you're getting answers. It must be incredibly frustrating.

I just wanted to say, have you thought about acupuncture? You don't need a western medicine diagnosis to have treatment so it's often a great solution when you're not quite sure what is going on.
From a Chinese medicine perspective, your symptoms suggest a blood deficiency as well as some other deficiencies and stagnation. If you're local to Leeds take a look at Thrive Acupuncture Clinic or if not check the British Acupuncture Council register.

I'd suggest checking your iron and ferritin levels with the GP, what is 'normal' for the NHS isn't necessarily optimal. Ensure the vitamin D you're taking is high quality, those suspended in MCT oil are great for absorption. Also try to increase the levels of red meat, leafy greens and foods such as kidney beans, black beans, beetroot, berries, etc. Also avoid cold foods and drinks, alcohol and caffeine and try to eat soups and stews, bone broths, root vegetables, etc. and move your body daily. Even if that's seated yoga or qi gong which are really gentle and can be done via YouTube. If you really don't have the energy then try body tapping - if you google it you'll find videos but it's essentially tapping all over your body with the palm of your hand or a lose fist, it shouldn't hurt but firm enough to feel it, you'll be amazed how much more energised it can make you feel.

I do hope you feel better soon.

Thrive Acupuncture Clinic | Otley Acupuncturist | Women's Health specialist

Women's health and fertility specialist acupuncture at Thrive Acupuncture in Otley. We offer acupuncture, facial acupuncture and ear seed treatments from our easily accessible Otley clinic close to Leeds, Harrogate and Ilkley

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cowandplough · 31/03/2025 10:49

Endometriosis?

Original poster

BexAubs20 · 31/03/2025 12:28

Platypuslover · 30/03/2025 12:38

You likely have a fatty liver too. Pain on right side under ribs sounds like it.

This was ruled out had it tested and re tested

OP posts:

Original poster

BexAubs20 · 31/03/2025 12:29

cowandplough · 31/03/2025 10:49

Endometriosis?

Possibly I’ve asked for this to be checked next

OP posts:

Original poster

BexAubs20 · 31/03/2025 12:30

BeCloud · 31/03/2025 09:52

I'm so sorry you have all these symptoms and don't feel like you're getting answers. It must be incredibly frustrating.

I just wanted to say, have you thought about acupuncture? You don't need a western medicine diagnosis to have treatment so it's often a great solution when you're not quite sure what is going on.
From a Chinese medicine perspective, your symptoms suggest a blood deficiency as well as some other deficiencies and stagnation. If you're local to Leeds take a look at Thrive Acupuncture Clinic or if not check the British Acupuncture Council register.

I'd suggest checking your iron and ferritin levels with the GP, what is 'normal' for the NHS isn't necessarily optimal. Ensure the vitamin D you're taking is high quality, those suspended in MCT oil are great for absorption. Also try to increase the levels of red meat, leafy greens and foods such as kidney beans, black beans, beetroot, berries, etc. Also avoid cold foods and drinks, alcohol and caffeine and try to eat soups and stews, bone broths, root vegetables, etc. and move your body daily. Even if that's seated yoga or qi gong which are really gentle and can be done via YouTube. If you really don't have the energy then try body tapping - if you google it you'll find videos but it's essentially tapping all over your body with the palm of your hand or a lose fist, it shouldn't hurt but firm enough to feel it, you'll be amazed how much more energised it can make you feel.

I do hope you feel better soon.

Fantastic advice thank you so much! I actually don’t live far from Leeds so will look into this place.

OP posts:

Original poster

BexAubs20 · 31/03/2025 12:31

Elicitcoffee · 31/03/2025 07:26

How are you managing financially with 4 children as a single parent not working, and presumably no disability benefits given no diagnosis of anything at all (yes I know diagnosis isn’t necessarily a requirement but I’d be very surprised if the op received disability benefits when the GP seems unwilling to agree with (and in fact doubtful) her about the severity of her symptoms

What has that got to do with you? My finances are none of your concern

OP posts:

Original poster

BexAubs20 · 31/03/2025 12:35

HoldTightandPretenditsaPlan · 30/03/2025 09:08

Have you heard of EDS? I had a lot of the symptoms you describe. Had MRI scans, cat scans, ultrasound ds, bloods including every test under the sun. Mostly everything was normal... Tried telling me it was fibromyalgia which did fit apart from the nails, dryness and ulcers so I did a deep dive and found Ehlers Danlos Syndrome. Turns out my whole family has it which also is linked to POTS, MCAS and a whole host of other lovely things. There are 13 variants, 12 are able to be genetically tested for, hyoermobile type - the one I have can't be. There's a great insta account called "@ connective issues" is full of really useful information or feel free to ask

Thanks so much yes I’ve heard of it. I don’t have any info on my dad’s medical history or his side of the family so it’s difficult to k ow for sure re family history/ genetics

OP posts:

Original poster

BexAubs20 · 31/03/2025 12:38

Woofie7 · 29/03/2025 22:55

So as a person with three chronic illnesses, who had to give up work too, these are my thoughts.

very much sounds like fibromyalgia, M.E, Long covid or/and FND. A diagnosis won’t help but whatever you get please get it in writing to help you get any help you need.

I suggest you look at neurosymptons web site.

other ideas: sometimes you need to seperate things . So some of these things you can treat individually. ( if you have the energy)

Chronic illness is hideous, often side lined, general gps are really not plugged into treating it.

I would ask to be referred to a rheumatologist or neurologist or M E fibro long covid specialist in your area also a OT for ME/ long covid can help hugely . They do exist.

You will hate this advice! Stop doing anything. Treat yourself like you have flu , put yourself to bed and do nothing . Except drinks easy meals etc. do not push , do not exercise!
the new 2023/4 nice guidelines recognised that severe damage can be done by pushing and exercising if you have severe fatigue symptoms.

So I pushed and exercised ended up having a functional stroke in 2018 and am now often in a wheelchair. My brain just shut down said that’s enough and I collapsed no walking no talking no arm movements. I was in bed 6 months . Now some days I can do 300 steps some days 2000 a day . But everything is meticulously planned. I am just getting a tiny bit of life back due to accepting my disability.

can you see another gp in your practice?
One thing to know , you must be brave and ask for what you want, ask gp for referrals. “I would like a referral too ….” They are not mind readers and often will not offer as they are not sure where to start.

I could list your ailments and say do this that etc .
So hair nails get some nutri gummies from amazon they are amazing. Ferroglobin is a great supplement to take.
For bowel issues take 200 mg of peppermint tablets twice a day .
eye: get some good eye wetting drops from amazon .
Lips get a good lip balm not Vaseline .
get some magnesium capsules two a day at night I take “better vits”

for aches and fatigue. Give your body time to rest. A better you magnesium spray is excellent. Try meditainment a great guided meditation. Sleep,doze, use audible, pod casts etc, limit tv time as eyes get tired. Limit screen time, limit speech ( my hardest thing )

EMDR and CBT counselling are brilliant. They give you permission to get your feelings really out there and to moan, off load . Then your counsellor will give you small points to work on each time .

if it’s this sort of illness it takes a long while to notice any improvements. And the worse thing is you feel awful and guilty frustrated etc because it’s a chronic illness not acute.
you will loose friends and family who don’t understand , and have a much smaller group around you but they will be genuine .

lastly, so sorry this is so long and doom laden! Have you suffered any trauma in your life? Medical ? Physical? Mental ? This can be a reaction to suppressed traumas . Saying yes too much , putting others first always.

And if you think that sounds all very very expensive,
being ill is very very expensive.

sending love best wishes and gentle hugs . Please rest rest rest to give your body time to heal . It’s telling you something.

God bless you! I’m so sorry you went through this! Thank you for taking the time to reply to me with such good advice. Yes lots of trauma unfortunately which I’ve read is linked to fibromyalgia etc. I use magnesium cream on a night.

OP posts:

Original poster

BexAubs20 · 31/03/2025 12:42

llizzie · 30/03/2025 04:12

I have GBS /CIDP, diagnosed by spinal tap. They injected my spine with a dye I turned out to be allergic to, so learned to walk again. GBS is an inflammatory disease of the central nervous system, like something shorting the whole house electricity supply and an electrician putting it all back wrongly. My reflexes were reversed, which also helped the diagnosis. If it starts in the feet/legs you have a chance of survival. If it attacks the nerve supply to the heart, it is death, unless you are able to be put on life support. I didn't, but it has been hairy a few times.

CIDP is the chronic form. There are so many ways doctors can diagnose the many diseases of the central nervous system.

Most neurological conditions can be diagnosed. Many of the OP's symptoms are easy to treat. I have suffered many of them, and the suggestions I made work for me. It doesn't involve much money, so worth a try.

Depression is a symptom of underactive thyroid gland. They diagnosed that at the Hospital for Nervous Diseases in London. Once I had the thyroxine I wasn't depressed. They also diagnosed carpal tunnel syndrome when I lost the use of my hands. I had them operated on and can type again. That is good, because speech is sometimes difficult.

I also have polymyalgia Rheumatica, which is very painful. That is diagnosed by a blood test. It is in remission after a course of prednisolone, which also stopped me leaking. Dr. says it does that sometimes. A bonus. Childbirth is not without it's adverse effects.

I have 21 items on my repeat. They all work, because I have not been in hospital for a long time. I buy vitamin B complex and vitamin E, which are fairly cheap and not POMs. Vitamin B complex cure the sores which come in the corner of my mouth, so I know they work. Vitamin E is for nerve repair. They don't heal nerves, or there wouldn't be any paraplegics, but I have noticed a difference over the past 4/5 years. I had them posted in Covid, and still do. They are in my notes.

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I’ve had sores in the corners of my mouth too forgot about that!

OP posts:

Anonforthis58 · 31/03/2025 12:52

Devora13 · 30/03/2025 13:44

@Anonforthis58
Yeah of course. Best not to take any individual responsibility for changing things then?
We all need to be the change we want to see in the world, unless what we really want is a toxic, hostile world where everyone is looking to be offended and simultaneously scared of words, in which case we're doing great.

Try telling OP this instead. I’m not the one who needs to change. Scroll to the most recent posts too - OP is still being rude 🤷‍♀️

Concussion · 31/03/2025 13:23

Is there anything in your environment? Any possibility of hidden mold? It could explain some issues.

theone100 · 31/03/2025 15:15

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