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

Fibromyalgia was what popped into my mind too when I read all your symptoms. Can you get a second opinion elsewhere? I guess you may have to pay for it though. Half the population is low on vitamin D in the winter months. My husband is but doesn't have all those symptoms. Hope you get to the bottom of it

Anxiety, can, and does cause all of your symptoms - not saying it is, but don't rule it out, I suffer from GAD (under control for 20 years) but it is a real condition with actual physical manifestations.

Lupus?

First thing I thought, same as how I am. 😒

@FlatWhiteExtraHot I’ve had fibromyalgia for 12 years now, medication wise I take 10mg of amitripyline about 6pm in the evening, when pain is bad I up it to 20/30mg I don’t go over that as I turn into a zombie the next day.
Other things I find help reducing stress and how you deal with stress, getting proper sleep 8/9 hours, stretching yoga, trigger Pilates (really helps with muscular pain and stress relief) light walking if feeling up to it, meditation, doing things you enjoy and that make you happy as much as possible. As for supplements I’ve spent £100s and nothing helps. As for diet I would just try and eat a normal balanced diet.
i have learnt to slow down my life as I now have 6 year old and work part time I can cope and pain is no where as near as bad as it was 12 years ago. I find periods of stress can make the pain worse but I just up things like trigger Pilates or yoga etc to help compensate and eventually I up my medication abit if really struggling. It has taken me along time to get to this point and a lot of trial and error. Obviously everyone different and these are just things that help me.

MCAS would be my suggestion and possibly hypermobility / EDS

Have you mould in your house? The toxins can produce an immune response in some people similar to your symptoms. Also get checked for Lyme and Bartonella and mycoplasma. A homeopath / functional doctor can do tests if your GP won’t or can’t.

Also - scan your results into chat gpt as A.I. is amazing at seeing patterns and diagnosing what the docs can miss with the naked eye.

Honestly I’ve nearly been bed bound by all this, I would literally get up go to work then come home and go to bed everyday and then at weekends spend the whole time in bed as everything hurt and i was exhausted.

It sounds really tough for you OP, and hats off to you for managing 4 children!

I have no medical knowledge and I hope the GP continues to investigate with you.

I appreciate that you may already eat really well etc, I am not assuming anything but wanted to add my experience in case it was helpful.

What I will say is that when my children were small, I had many of the same symptoms as well as depression and anxiety. I was constantly feeling ill, aches and pains and bowels and tummy in a terrible state. I was overweight but not obese and I walked a bit but no formal exercise. Plus I drunk too much wine as a coping mechanism.

After a couple of years of this, I decided I needed to sort myself out - I went on antidepressants, stopped drinking completely, cut out UPF and gluten, and now eat a very clean diet. Also started getting more fresh air and more walking and as I started to feel better, I went to a gym with a friend and amazingly got really into it, and I get a huge endorphin hit when I go. I am 4 years into this lifestyle and it has transformed my physical and MH. Obv, if you do have fibromyalgia, exercise is not recommended I think- but for a long time, I simply just went outside more and pottered , sometimes just reading my kindle on a park bench.

If someone had told me the difference changing my lifestyle would have made, I wouldn’t have believed them. I know it isn’t a magic cure, but for me, it has transformed my life.

Yes! I have all of these things minus the rash. I have ehlers danlos syndrome but it's a genetic condition I've had since birth so not sure if it's what you have but I have all the same things.

Did your blood tests include CA -125 (ovarian cancer, not high on the list but worth ruling out if bloated stomach) Lyme disease , autoimmune screen and hepatitis screen?
You should be able to see your blood tests on the NHS app.

I think the modern way of medication is not the best thing. I was offered beta blockers to manage anxiety but as mine was health related the side effects made me say no. Now I take nothing apart from occasional allergy meds.

Eat as well as you can, try and make 10,000 steps get good sleep and get some sunshine and you might start feeling better even if there is an underlying condition.

Have you been investigated for endometriosis?

lupas

Not (or not just) long COVID or stress. The gynae symptoms (very heavy painful periods, pelvic pain/ discomfort) don’t fit.

Hi there, I think you need to get your oestrogen and fsh levels checked as it sounds like peri menopause. I've been through most of these symptoms myself. I understand how you feel.

Have they tested for endometriosis? I have lots of very similar symptoms and have been fobbed off with IBS - it was initially my lower left side that had the same symptoms as you- now it’s the lower right side too and too low to be bowel etc. pain tugs through to my back from the front.

Same here. Thyroid issues, particularly those within the ‘normal’ TSH range are notoriously poorly picked up and handled in the UK.

Same as this poster, my TSH is just under 3 at the moment and am not well.

Re: diagnosis, this was a long, hard process. GP’s were still telling me there was no problem until finally they tested thyroid antibodies and the test came back positive with high numbers. I had to request the antibody test as the NHS only test TSH as standard which does not give a full and proper picture of thyroid health without the other tests (see below).

Late diagnosis revealed my thyroid was almost completely eaten away by the disease by the time it was finally picked up (confirmed via ultrasound) and in the final destructive phase. I was severely unwell and symptoms worsened like slurred speech, disorientation, breathing problems (airway muscles relaxing and closing) and extreme fatigue. Even with this gp was ‘not concerned’ I had thyroid issues as TSH was only just over the normal line and what they consider ‘sub clinical’. I felt gaslighted and ignored even when symptoms became very severe. It appears it was only the antibody test was enough to satisfy them there was a problem.

I would really recommend requesting a FULL thyroid panel, this is a 4 part blood test comprising:

TSH
T3
T4
TPOab (thyroid antibody test)

You can pay to get this done privately if your GP refuses. Ask to see the numbers on the tests as others have said a generic ‘normal, no further action’ doesn’t tell you enough, you need to see what your numbers are.

Your symptoms sound like endometriosis to me. I had all of your symptoms, endo is very hard to diagnose and can only be found by having a laparoscopy (camera through belly button under anaesthesia). A scan can confirm cyts on ovary’s but not endometriosis. Also it took 4 camera ops to find mine which was rated as severe. The pain below the hips is just awful, wears you down. Whilst waiting for gynaecology referral as gp to give you something to stop your periods, if your symptoms Improve then it could be hormone related and defo endometriosis

Sorry, this was the poster up thread (page 3) I meant to quote in my post above

As somebody who has been diagnosed with fibromyalgia, I can say that isn’t 100% true. I was offered medication (I can’t remember what it was now) but the side effects were quite severe so I declined. But just understanding my condition has helped me to manage it and I’m so much better now. Pre-diagnosis I used to tell myself that there was nothing wrong with me and try and push through the fatigue, which made it worse. Now I understand my triggers and limits, I’ve learnt to listen to my body. I’m like a different person, I still have bad days/weeks but they are far less frequent.

A friend of mine has fibro and lupus and you'd symptoms tick a lot of the same boxes so maybe you have a combo of fibro plus an autoimmune disease

Celiac can’t be ruled out without a biopsy.

it could still be hormonal. Estrogen nosedives at 35 and it's the 'get up and go' hormones.