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What the hell is the matter with me?

(58 Posts)
FallingApart2019 Sun 08-Dec-19 19:56:51

NC for this as some friends know my other MN name.

I need the collective MN wisdom because I feel like shit and have done for so many months that I don’t remember what it is to feel well. I’m really at the end of my tether sad

I’m mid/late 30s and work FT with 2DC (married) in a relatively stressful and busy job but it’s been like this for the past 5 years and hasn’t changed in any way.

I have Vitamin b12 deficiency and get injections every 8 weeks and have done for the past few years - prior to this my symptoms were extreme fatigue and brain fog but this doesn’t seem to be an issue any more. I also take lansoprazole for acid reflux (although not every day because I don’t always need it - I probably take 30mg every other day). I also take a steroid inhaler for my asthma. No hormonal contraceptives as they made me lose my mind! Lots of my family are T1 diabetic although LADA but I’ve only ever had one out of the ordinary reading (11.2mmol). The rest are usually 5.0 or thereabouts.
My periods used to be 30ish days but are now 35/36 days and whereas my first day used to be hell on earth, it’s now my second day.

The past 6mo I’ve left awful. Really shit. There is always something wrong with me. It’s nothing particularly dreadful - I’ve not been off work for example - it’s always low level stuff but cumulative affect of making me feel constantly ‘not well’. I have a few days a month where I feel normal.

I am on my second cold sore in as many weeks. In between I have had a whopping great big mouth ulcer which went but the second cold sore came soon after.

I’ve had a very sore vagina (sorry!) - I’ve had some minor fissures between my inner and outer labia which seem to happen after I’ve finished my period but goes away with some hydrocortisone cream. I’ve previously been to the GP about a dry vulval region and they said it was due to me waxing regularly, so I’ve now stopped but the problem now seems to be my localised tobmy vagina than my vulva region as a whole.

My skin (overall) seems to be quite dry, I have dry patches on my face and arms with small plagues occasionally appearing elsewhere but are short lived and resolved with a couple of applications of hydrocortisone cream.

I always feel drained and lethargic. I mostly have no energy or enthusiasm for things.

I don’t have regular bowel movements (compared to my husband anyway) but I will have the occasional bout of an upset stomach, for no more than a day.

I recently went to the GP because I felt so anxious about how shit I felt and have been attending CBT but I’m so confused as to whether I’m actually ill or have anxiety which is causing physical symptoms? I don’t generally have a history of anxiety - I suffered postnatally with it but after a few months on Sertraline I was fine.

I’m just so sick of feeling awful but don’t know how to (maybe) separate the possible health anxiety from real symptoms.

Sorry for the rambling. I’m just so fed up and hoping that maybe somebody reads this and recognises it as something they have, that they have been receiving treatment for!

user765 Sun 08-Dec-19 20:40:15

Have you had a thyroid function test? All those things are symptomatic of an underactive thyroid (minus vagina pains). Other possibilities are something hormone related or an autoimmune illness? Hope you get to the bottom of it and hope you feel better very soon xxx

WoollyFoolly Sun 08-Dec-19 21:04:22

It's very likely you need much more frequent b12 injections. I have pernicious anaemia and have started to feel actually well after about 2 years of daily/every other day jabs. It's honestly so striking what a difference there is between just getting through and actually feeling pretty normal again.

Aquamarine1029 Sun 08-Dec-19 21:09:26

Along with checking your thyroid, I think you should also consider peri-menopause.

i.stuff.co.nz/life-style/well-good/teach-me/113666670/perimenopause-lead-up-to-menopause-very-uncomfortable-and-poorly-understood

Calledyoulastnightfromglasgow Sun 08-Dec-19 21:13:18

Your stomach isn’t working well; could be some or all of a parasite, poor digestion, low stomach acid (despite the reflux), poor absorption, damaged lining, messes up microbiome, food intolerances.
Some and indeed all of these will contribute to deficiencies leading to reduced hormone, immune, detox and cell function. Fix your tummy and it will fall into place

See a BANT registered nutritionist and they can either a stool test to check all these things or arrange a programme to sort you out.

FallingApart2019 Sun 08-Dec-19 21:23:30

Thank you all for your responses. It genuinely means a lot. It’s so embarrassing feeling so shit most of the time that I don’t say anything to my family and friends.

WoollyFoolly how do you get more frequent B12’s? I had to fight tooth and nail to get down to 8 weeks but they said any more frequent would require a haematologist and it’s hard to register B12 levels when already having injections as they are artificially high?

user765 I’ve had a TSH(?) test in the past and apparently it was normal. I did think it may have been under active in the past, especially when exploring my B12 deficiency. Would that cause cold sores, ulcers and dry skin?

Aquamarine1029 my mum has suggested peri menopause as well. I would buck the trend of women in my family to start so early but I’m desperate to find any reason I feel so shit every day! Is there is a test I could push for?

I do think there is perhaps some auto immune issue going on with me, I have done for some years, but I can’t work out what it is or who I need to see to get it looked in to. I should be in the prime of my life but I feel ready to retire sad

BumbleNova Sun 08-Dec-19 21:28:46

Sounds like exactly like me before I was diagnosed as a coeliac.

FallingApart2019 Sun 08-Dec-19 21:29:21

Calledyoulastnightfromglasgow

Thank you. I will look in to this. Is there a resource I can use to find somebody?

BumbleNova Sun 08-Dec-19 21:30:07

I felt like a new person 48 hours after cutting out gluten.

Busymummy16 Sun 08-Dec-19 21:33:17

When you described your period as hell on earth plus all the other things could it be endometriosis? Nausea, fatigue, bowel and bladder problems. My painful heavy periods were normalised to me as a teen but 25 yrs later turns out I have severe endo. Hope you feel better soon xx

scousadelic Sun 08-Dec-19 21:36:01

Might be rather simple but I would try Vit D supplements. Most people are deficient at this time of year so testing is fairly pointless.
Low Vit D reduces immunity and causes lots of other odd symptoms
www.healthline.com/nutrition/vitamin-d-deficiency-symptoms

Aquamarine1029 Sun 08-Dec-19 21:36:24

Tests for peri-menopause are basically useless because your hormones are fluctuating all over the place, all the time. I started peri when I was 42/43, and my mum said NO WAY, you're far too young. That was and is absolutely not true for any woman. Peri is a "stage" that can progress for years and years before menopause. I went to 3 gp's who fucked me off, saying I was "too young", and then I went private to a specialist. They knew immediately that it was peri and started me on HRT. I feel it saved my life, honestly.

Yodabrussel Sun 08-Dec-19 21:38:05

@BumbleNova you beat me to it, I was just about to say ask for being tested for coeliac disease. I've felt very similar for years - constantly tired, brain fog, headaches, depression, mouth ulcers, anaemia, osteoporosis, under active thyroid. Turns out being a coeliac has caused or contributed to all the above - never thought to ask for that test as I never had the typical 'tummy' problems I would associate with being coeliac.

Definitely worth ruling that out @FallingApart2019 - and I know how you feel about constantly feeling not right - it's hideous and very hard to explain with just sounding like a hypochondriac xx

Yodabrussel Sun 08-Dec-19 21:39:39

*without sounding like a hypochondriac I meant

Penhaligon Sun 08-Dec-19 21:40:40

I was thinking thyroid too. Dry skin can be a symptom, the tiredness/lack of energy and the anxiety are symptoms I get.

CatintheFireplace Sun 08-Dec-19 21:44:05

The mouth ulcers and genital issues made me think of behcets disease (it could be any number of things of course, this is just one automimune disease that I'm familiar with).
www.mayoclinic.org/diseases-conditions/behcets-disease/symptoms-causes/syc-20351326

WoollyFoolly Sun 08-Dec-19 21:46:14

I just inject myself @FallingApart2019. I had monthly jabs at the GP initially that were then just arbitrarily moved to 3 monthly and I was just desperate.
Coeliac disease is one of the things you should be tested for when you are found to have b12 deficiency by the way, as the inflammation in your gut can stop you absorbing it so it can cause b12 deficiency.

FallingApart2019 Sun 08-Dec-19 21:47:46

BumbleNova really? I always thought coeliac had neigh on constant diarrhoea, I’ve never considered it for myself? I eat lots of bread usually...

Busymummy16 I considered endometriosis but I work with somebody who isn’t able to leave the house on her period so I discounted it - I’m just very heavy and it almost feels like my insides are falling out (sorry TMI) but I can use super tampons and change regularly without too much problem. Were your experiences similar to mine?

scousadelic I used a VitD mouth spray last year and definitely noticed an increase in my energy levels if nothing else. Thanks for the reminder- I’ll get another one.

Aquamarine1029 what specialist did you go to? I’m willing to try and pay for any private referrals if it helps me get up the bottom of what’s making me feel so crap. I just have no idea what specialist I need blush my mum is almost convinced I’m peri after seeing her good friend suffer for 10years with similar symptoms

MrsKCastle Sun 08-Dec-19 21:49:51

Like other posters, your symptoms made me think of Coeliac disease. Check out the Coeliac UK website.

It definitely sounds as though you should push for further testing.

FallingApart2019 Sun 08-Dec-19 21:57:59

Yodabrussel thank you. That’s exactly how I feel. I’m bored of feeling not quite right so now I don’t mention it unless I’m really feeling it. I also have the sniffles a lot and periods where my skin feels like it’s crawling. Did you get that?

What’s the test for coeliacs?

Penhaligon thank you. I’ll ask for a retest to check.

CatintheFireplace I saw this online recently (when endlessly googling reasons I feel like this!) but I don’t have any issues with my eyes and apparently 70% of people with this do? If you have it, did you have eye problems too?

WoollyFoolly I didn’t realise coeliacs was usually test for when looking at b12 issues. It would make sense. I was tested for PA but after a loading dose and it predictably cane back negative. Do you buy the injections from Germany? How often do you SI?

Thanks again everyone. It’s so helpful knowing that I’m not the only one that has had these nondescript but shitty symptoms.

FallingApart2019 Sun 08-Dec-19 21:59:05

MrsKCastle thank you. I’d never considered it because I wasn’t having any upset stomachs but I’ll definitively read up on it.

WoollyFoolly Sun 08-Dec-19 22:03:33

Yes I buy them from Germany. I have been doing it for a few years now and since the start of this year have dropped down to once a week. Prior to that I'd been doing daily or every other day when I really couldn't bear to do it daily (it still bloody hurts!). I also take folic acid which is important for b12 usage

pastabest Sun 08-Dec-19 22:04:45

Definitely need a test for Coeliac.

Your symptoms are almost a tick list for it.

Whatever you do don't stop eating gluten before the blood test otherwise you might get a false negative.

FallingApart2019 Sun 08-Dec-19 22:06:50

WoollyFoolly they really do sting, don’t they? Which solution do you buy? I know there’s hydroxocobalamin and cyanocobalamin buy I’m unsure as to what is more effective. Also, where do you inject if you’re doing it regularly?! My poor arm 😐

FallingApart2019 Sun 08-Dec-19 22:08:43

pastabest I’m shocked at how many people have suggested this. I genuinely never would have considered it - it’s why I posted - there’s far more worldly people on here than me.

What test should I ask for? Is it just coeliacs? Or is there a proper name for it? I don’t want to go all guns blazing and make a fool out of myself 😂

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