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Original poster

WTF is wrong with me?

33 replies

SukiTheDog · 09/09/2017 10:40

Symptoms:

Constant mouth ulceration
Nasal cold sores
Shivering episodes
Crushing upper abdomen pain radiating to back (have to sleep propped up
Can't lie on left/right sides
Nausea
Headaches
Fatigue
Rashes
Reynauds

Family history:
Crohns
Psoriasis
Ulcerative Colitis

Investigations done in 2014:

MRI, Ultrasound and CT of abdomen
Bloods
Endoscopy
All normal. Well, some tiny elevations but essentially "normal"

History:

Allergies (severe) hospitalised several times and used to carry Adrenaline pen as they were unsure of what I was reacting to. Was tested but, never had results. GP requested but not sure what happened.
Odd torso/neck/abdomen itchy rashes come and go.

Saw GP a month ago who said "you had many many tests 3 years ago, I see no point in going down that route again". In other words, "you're bonkers, there's nowt wrong with you. Go away and stop wasting my time".

I'm at my wits end.

Any ideas welcome...

OP posts:
Original poster
SukiTheDog · 09/09/2017 10:41

Oh, and joint pain. Shocking pain hands, fingers, feet.

OP posts:
anotherbadusername · 09/09/2017 10:45

No ideas but have you kept a symptom diary? And photos of the rashes when they are at their worst? I have been in this position before and it is really frustrating - it turned out that some of it was psychogenic (it sounds odd) because as soon as I was happy a lot of the symptoms cleared up.

DrRodneyMcKay · 09/09/2017 11:03

first thought: Lupus

have you seen any specialists?

AttilaTheMeerkat · 09/09/2017 11:41

I would see another GP within this practice or register at another practice; this is not all in your head and they have simply failed to find out what is wrong.

You also need up to date test results; any test done over six months ago now should be discounted. I would keep a daily pain and symptom diary if you do not already do this.

vintagechick43 · 09/09/2017 11:45

I also thought Lupus , you definitely need tests doing again. Sometimes things don't always show up in bloods first time, I've got RA and it took a year to show up in my blood tests.

Original poster
SukiTheDog · 09/09/2017 19:20

My dentist has been taking photos of my constant ulcers. She has said she will refer me. The GP surgery is one huge community surgery. There's no alternative. They insist that if Bloods are normal, then all's OK. I've been "borderline" on a few things, a few times but nothing significant. Was tested for RA and it was slightly raised but the next time OK. Was diagnosed with fibromyalgia 20 years ago but, apparently, according to GP, that's not significant. I've lost weight (about a stone) because the nausea and upper abdo pain is excruciating.

OP posts:
Needalifeoverhaul · 09/09/2017 19:42

My immediate thought was Lupus too.

iammargesimpson · 09/09/2017 19:55

Gallstones? The upper abdominal pain and having to sleep propped up sound familiar! Not sure if it ties in with cold sores and mouth ulcers though. Hope you get sorted asap

katymac · 09/09/2017 20:18

I had reccurant mouth ulcers, IBS, CFS & FM

I have taken my life into my own hands - I take Zinc gluconate for the ulcers & the IBS - very positive experience - the GP suggested Zinc sulphate but it gave me terrible wind

I take B12 (large doses) which help with pain & Vit D (large doses) which help with the Pain & IBS

Headaches/incontenience/muscle tone/energy levels have all improved as well

I'm not 'better' but I am a hell of a lot less ill.....

I also have random and bizarre skin allergies to unknown substances - I can use a hand cream for months then it will suddenly cause an allergy, clothes (bras? wristbands?) can cause a rash never mind jewellry (costume or real) I am investigating Mast cell (something or other - can't think right now)

Original poster
SukiTheDog · 09/09/2017 20:23

Thanks for the replies.

My dentist was pretty 😐😳 that my GP was not more forthcoming.

OP posts:
katymac · 09/09/2017 20:28

Oh the start of the Zinc was the oral dept atthe hospital - they noticed my Zinc was very very low - not the GP - they just told him to prescribe it

Original poster
SukiTheDog · 09/09/2017 20:49

What's really scary for me now is that if I feel like this and there's nothing showing on investigations, how bad does it have to be to be picked up? I'll be in agony.

I slept for three hours this afternoon. I could sleep the clock round.

Oh, and not gall stones. Nothing to see on the scan.

OP posts:
katymac · 09/09/2017 20:54

FM is significant, it's bloody debilitating the tiredness is part of that & the pain

Xocaraic · 09/09/2017 21:13

Have you been tested (Endoscopy) for Helicobacter Pylori?
I was in hospital for cardiac tests (having been in the ER whilst in the US) to cut a long story short, I was diagnosed with Helicobacter and within days of treatment beginning I started to feel an improvement) my psoriasis all but disappeared, and although I couldn't lie on either side for a while it was far less awful. Maybe ask your GP to get you tested for Helicobacter?

Room101isWhereIUsedToLive · 09/09/2017 21:15

I was also going to say gallstones. No personal experience but I have read a lot of threads on here.

Justasec · 09/09/2017 21:22

Doesn't really fit a lot of your symptoms but worth asking, ever had a tick bite? Untreated Lyme disease can cause some of what you're describing, esp the joint pain.

RandomMess · 09/09/2017 21:25

Psoriatic Arthritis?

It's autoimmune so you basically then get everything else going.,.

RandomMess · 09/09/2017 21:26

Hands, fingers, feet excruciating painful along with exhaustion key symptoms!

Original poster
SukiTheDog · 09/09/2017 21:32

Helicobacter...no. Endoscopy 3 yrs ago.

OP posts:
daisychicken · 09/09/2017 21:36

It sounds like crohns based on a friend's symptoms. She had a crohns diagnosis in her twenties having had many similar symptoms for years but only in the last 5 years or so were all the symptoms connected. Her dentist connected the dots re mouth ulcers and crohns - apparently it's common for children to have recurrent ulcers in the mouth/nose pre crohns diagnosis. Can your dentist refer you to a more specialized dentist?

wannabestressfree · 09/09/2017 22:27

Crohns is hard to diagnose unless flared. Your symptoms sound very similar to mine and my children now have the symptoms I had as a child- mouth ulcers, constantly on the loo, joint pain etc.

Can you go to hospital when you feel really poorly? Rather than gp?

FayKnights · 09/09/2017 23:01

You poor thing, one of those symptoms would be bad enough.
Bit left field but have you heard of Behcets syndrome? Have a read of the symptoms, recurring ulcers are a main symptom, its difficult to diagnose but can be treated with steroids.

certainlynotsusan · 10/09/2017 08:16

Are you hypermobile? EDS?

Original poster
SukiTheDog · 10/09/2017 20:37

Have read eds. don't think it's me. Was diagnosed with ankylosing spondylitis 15 years ago and note that's also an autoimmune type condition.

Last night, felt like my upper abdomen was in a vice. I woke up shivering but my hair was damp on my neck from sweating. Could only lie there and wait for it to pass. Had to get up at 4 am and get a hot water bottle as was utterly frozen.

I'm dying, slowly, I think.

OP posts:
RupertsMum2 · 10/09/2017 20:58

Have you been tested for coeliacs? I have a lot of your symptoms with Fibromyalgia but have noticed an improvement in my symptoms (especially mouth ulcers and cold sores) since cutting gluten from my diet. I used to get the shivering/cold sweats a lot and I haven't had it for a while now.