Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Undiagnosed noob

Dec 24, 2016 6:38 PM

Hi. I have just joined. I am in the UK. I have been suffering from backache amongst other aches and pains for years. Always been dismissed by GPs as childbirth or depression related. Has got worse lately along with fatigue. Inflammation showing in blood tests also getting worse. Neuropathic pain in my head has got worse too. Being referred to rheumatology which I believe can take quite a while. I don't really have a question. I guess I'm just venting about being stuck in limbo and have the feeling it will be a long time before I get a diagnosis.

Dec 24, 2016 10:13 PM

Hang in there friend. We all walk in your shoes at least some of the time. Keep posting your thoughts & frustrations. This is an awesomely supportive group of fellow pain experiences. In to making up my own words on this post. Tell us a little about yourself if you want. If you read on you'll hear all about us. WelcomeπŸ˜€

Dec 25, 2016 11:23 AM

lauz, welcome to the asylum!!! Sorry you're undiagnosed and in pain. I hope you can get the help you need to get some relief. In the meanwhile, sit back, kick your heels up and read some older threads as there is a plethora of information there. Enjoy!πŸ’•πŸ˜Š

Dec 28, 2016 2:23 PM

Welcome to our community family Lauz! Unfortunately for many of us have had to wait months to years before getting answers. I hope for your sake it's a short wait. Hugs love and prayers you feel better soon! πŸ™‚πŸ’•πŸ™πŸŒΈ

Dec 28, 2016 2:43 PM

Sorry you're in limbo. I was there for years too. It sucks. Don't give up finding answers when you know something is wrong. Document everything. Take pictures if you can. Like if you get swelling or rashes. I had specialists tell me nothing was wrong. They were very wrong and they should have known. I'm now diagnosed with lupus, sjogrens, and Raynaud's.
The doc I have now thinks I've had this since I was 12-13. I only actively started pursing answers because of major joint pain when I was 43. It took until I was almost 46 to be diagnosed.
I lost my bladder to IC at 28. Now I'm told it was lupus caused back then too. There's indication lupus affecting my kidneys now too.
I had so many symptoms most docs missed. They even ignored a positive ANA test along with all my symptoms and said it was a false positive 3x. Wrong. It was not false. All the best to you in your battle for answers.

Dec 28, 2016 3:31 PM

Thank you all so much for your replies. Today has been a good day but then that will be because I haven't done anything and I'm managing to sleep better on meds. I am writing a list of symptoms for my next visit to GP.

Dec 28, 2016 5:06 PM

im in the same position πŸ˜– although 2 appointments with rheumatologist. same symptoms of you. keep getting this horrid pain in my head aswell new symptom. been waiting for a diagnosis for 3years 😳 no one seems to understand it all and why i seem okay 1 day and not another day. sleep... what even is that lol x

Dec 28, 2016 5:56 PM

Hello... 🌹
i just wanted to give u a😊 warm welcome to the community πŸ€—... whatever happens with ur diagnosis 😚 we are all here for u... πŸ€— many of us are either walking or have walked the path u are on sweetheart...😚 so just breathe and know u are not alone..πŸ€—. and we understand πŸ€—
Much good karma coming ur way πŸ€—

Dec 28, 2016 8:28 PM

Autoimmune disease does that. Different symptoms come and go all the time. New ones show up out of nowhere often. Keep track of everything even if it seems insignificant. You only need 4 out of 11 markers to be diagnosed with an autoimmune disease like lupus.

Ready to start relieving your pain?

Join Community