Hey...not sure if I belong here but...! - Myositis UK

Myositis UK

1,284 members521 posts

Hey...not sure if I belong here but...!

Boggle99 profile image
6 Replies

So following a bout of pneumonia, for 5 years I've had pains, low mood, fatigue and IBS. Dr pushed me to go on anti depressants citing depression as the cause. After 3 years I moved home and dr. I told my new dr I wanted off the meds and explained my initial symptoms. He did blood tests (something my previous dr never did) and I was told I had practically no vit D , muscle enzyme was raised and abnormal liver function test. They have repeated the tests 3 times and put me in vit k. My results have been really up and down. I have been waiting to see rheumatology since Oct (I had an app for but they cancelled it due to a more urgent case needing it!) Anyway recently I feel I have deteriorated. I cleaned my house Wednesday and was basically wiped out for 3 days. My muscles In my chest have been tightening lately and I find myself taking deep breaths and it hurts. I have muscle weakness in my arms and pain in my shoulders and ankles (left ankle is continually swollen and some days I can barely put weight on it) and my neck feels like I have whip lash.

I don't have a diagnosis yet and prob wont for a while so I'm not sure if I should be here but as my gP has suggested this could be a diagnosis along with fibro I thought I may as well find out as much info as I can.

Hope you don't mind me popping by and saying hi

Written by
Boggle99 profile image
Boggle99
To view profiles and participate in discussions please or .
Read more about...
6 Replies
Jo-Goode profile image
Jo-GoodeAdministrator

Hi,

I would suggest contacting the hospital, first try one of the rheumatology secretary's and explain that you feel you are deteriorating and can they allocate you a cancellation as soon as possible. If that fails contact your GP and see if they can push for an appointment sooner. Another option would be the hospital PALS service (Patient Advice and Liaison Service) as the hospital were not in a position to evaluate your current condition without seeing you offering your appointment to another person in greater need.

Kind Regards,

Jo

MEW53 profile image
MEW53

Don’t give up on this, you need to try and get a rheumatologist to see you ASAP.

Try and find out who the secretary is and explain what has happened with the previous appt and how ill you feel.

Hope you feel better soon.

maidee profile image
maidee

Hi, I went through something similar over a course of 4months. My GP never did a blood test. I know most people will disagree with me here but if you are having chest pain go to the a&e. That's how I ended up with a diagnosis. I was so uncomfortable my pulse was racing but bp was slightly elevated. I was hospitalised due to the pulse not all my symptoms. In a nutshell you might beboverecerting those chest muscles soon would go and ask them to have look there and you might see a rheumy that way.

Mo

Boggle99 profile image
Boggle99

Hi thanks everyone. I wouldn't say it was chest pains more tightening and needing to take deep breaths. I've been exercising where I can although i have read mixed opinions on this. I have finally got an appointment for next Tuesday so hopefully I can start getting some answers

Vit D deficiency can cause quite dramatic symptoms like joint pain, fatigue and muscle aches etc.

It could be that which is easily treated with a supplement.

I would think you need further investigation of taking Vit D doesn’t resolve your symptoms.

Boggle99 profile image
Boggle99

Thanks Helen. I have been taking vit d supplements for 4 months with no effect :(

Not what you're looking for?

You may also like...

Hi, new here, and would like some help if you could please? :)

Hi Guy’s.. New here, but think I may be getting closer to my actual problem as time goes by. I’ve...

Anyone have Drug-induced Myositis?

Hi, I've had a diagnosis of MCAS (Mast Cell Activation Syndrome), but I had an argument with my...

Could I have dermatomyositis?

Firstly let me apologise for the length of this. I know it's not a good idea to ask for diagnoses...

FOOD TO EAT/EXERCISE

Hi, I have just joined the site, what kind of foods should I be eating as my myositis flares all...

Can my GP help with tests?

I have a rheumatologist's referral, which will likely take 6 months. When it was made, it was...