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I genuinely feel like I'm falling apart.

(15 Posts)
BumbleBeeWineGlass Wed 01-May-19 06:56:18

This is a rant thread, I feel like my body is falling apart and I don't really know what to do about it if anything.

My chronic fatigue has hit stupid levels,
I keep getting bad pain in my arms/hands,
I get regular spells of shortness of breath,
Intermittent left side chest pain,
I constantly feel like I need to burp,
I vomit now and again for no reason,
My temperature swings from very hot to very cold (on a thermometer and how I feel)
My skin is shocking,

and the straw that broke the camels back ... my big toe nail just randomly fell off last night, all of it... no injury, no pain, just went. sad

I have been to the GP so many times, fatigue is put down to 4 children and a full time job, I've had blood tests and they're sometimes low in iron/folates so I take a daily multi vitamin.

I've had chest X-ray and am awaiting a cardiology appointment after an echo but it's not urgent (I assume) and they've said they'll be in touch when an appointment is available.

My husband is worried about me, I'm starting to get worried about me,

My last random vomiting episode was 2 days ago and honestly I had such an impending sense that something wants very wrong - I just wanted to lay down and give up.

I'm not depressed, I'm in a job I love and I have a great family. The GP is so hard to get an appointment with and it's never very enlightening the last GO said she didn't know who to refer me to.

Anyway, that's is. It's out there and I feel a bit of relief from telling other people that I'm NOT OK!

OP’s posts: |
TheAnswerIsInABookSomewhere Wed 01-May-19 07:24:35

This all sounds so difficult, OP. I don’t have any real advice, just wanted to say how sorry I am sad

I suffered needlessly for nearly a year with something easily diagnosable and treatable. It was misdiagnosed five times with doctors eventually telling me all my scans were clear so it must be stress, and also I do seem like a rather anxious person. I changed doctors surgeries in the end, and from the first appointment there, I was taken seriously. One month later I was cured.

Are you keeping a diary of these symptoms? Just a quick note on your phone calendar every day? Sometimes it helps to get doctors to listen and see patterns?

BumbleBeeWineGlass Wed 01-May-19 16:00:13

I don't but I will do. Thanks for reading and replying.

OP’s posts: |
RedSheep73 Wed 01-May-19 16:09:22

Did they test your thyroid function? I don't know about all your symptoms, but fatigue, temperature fluctuation and bad skin might point that way. The other thing that leaps to mind is fibromyalgia? I do know how hard it is to get taken seriously, I got told I couldn't be referred to the chronic fatigue clinic unless I'd actually given up work. There's no attempt to help people to not get that bad. The other thing I would do, is see a chiropractor - as well as a doctor, not instead - they can help with all sorts of things and are brilliant at making you feel really listened to and not fobbed off.

RosaWaiting Wed 01-May-19 16:17:33

OP I'm not a doctor

but a few things occurred to me

1) was the thyroid test done properly

2) was a kidney function test done

3) could you have pernicious anemia and is the multivitamin enough?

BumbleBeeWineGlass Wed 01-May-19 20:26:32

I don't know if the test was done properly on my thyroid, they just said they'd do a blood test for thyroid and it came back fine apparently.
Not sure what else I've had tested, they just tell me they'll run bloods and then I either never hear or I get a text message telling me to pick up script for iron.

It's just a cheap multivitamin I take usually, the dr said I should get all my vitamins and nutrients from food, I eat a good diet with plenty of lean meat and fish and lots of colourful veg.

DH suggested paying for one of those at home blood tests that test for everything so we can read the results for ourselves and see what's been tested but I don't know if they're reliable.

OP’s posts: |
Iambuffy Wed 01-May-19 20:33:25

How old are you?

BumbleBeeWineGlass Wed 01-May-19 21:23:53

33

OP’s posts: |
Iambuffy Wed 01-May-19 21:30:04

Have you had a hormone panel done?

Lellochip Wed 01-May-19 21:50:50

I've used those at home tests and they've always compared pretty reliably with NHS ones.

I've done this because if GP says 'normal' it does not necessarily mean good/optimal. My main problem is fatigue so concentrated mainly on things like iron, B12, folate, vit D - had a folate deficiency that would've explained my symptoms completed missed by the GP. If you're low on something like this I find it easier to research what your levels should be, and what supplements you need to get there. A cheap multivitamin would probably not fix any deficiency you may have.

The private companies (I use thriva.co) also do hormones, thyroid, liver etc so you can a lot tested in one go, you get a report and then can take any issues that flag up back to your GP

RosaWaiting Wed 01-May-19 22:41:57

OP, your surgery will give you a copy of your blood test results, you don't need to just rely on them saying "it's fine".

You can have a look at the actual figures, see if anything is borderline, see how extensively they checked.

Iron absorption can be an issue with pills, you might be better trying Spatone sachets.

the GP could be completely missing borderline things, didn't look properly - so I'd definitely get a copy of your results before you pay for a home test (I don't know how much they are but as you've had recent tests, the answers are at your fingertips).

Thyroid levels for medication vary from country to country, which is worth knowing.

redannie118 Thu 02-May-19 08:22:51

Op- when you say your skin is shocking, in what way? You say you have hand pain- are your fingers cold or swollen? Any ridges in your nails?

BumbleBeeWineGlass Thu 02-May-19 14:59:03

My skin is very dry, open sores just appear from no where, tiny little ones that then itch like mad.

I have pits and white blobs on my nails.

My hands and feet are always freezing but not swollen, very weak though, when painful I physically don't have the strength in them to make a fist.

I've not had any hormone tests, my hormones are a nightmare though, I have to take a POP to keep me from turning into a suicidal psycho every month and to stop my periods or I have non stop thrush.

OP’s posts: |
jinglebellmel Thu 02-May-19 16:07:09

Sounds like it could be some sort of autoimmune conditionin or deficiency op? Ask your gp receptionist for a print out of all of your bloods from the last few months - you can check what’s been tested and how ‘normal’ the results were. I wouldn’t go paying for anything else until you’ve done that.

redannie118 Thu 02-May-19 16:32:53

Bumblebee this sounds a lot like scleroderma. The exhaustion, reflux/ sickness, sores, joint pain, cold hands/ feet, skin issues are all classic symptoms. Even if its not i would bet money on it being autoimmune. I would go back to gp and ask him to test you ANA markers, inflammitory markers and do full blood work. Also ask for a referral to a rhuematologist. Autoimmunes are traditionally missed or wrongly diagnosed. Good luck.

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