For stories, articles, questions about chronic illness such as Lyme Disease, multiple sclerosis, SLE, fibro and more.
Your Diagnosis Journey.
Hey Spoonies, First off I am super happy to see this community pop up on Imzy, I hope to see it grow as people discover our little corner of the internet.
Why am I posting? Well... I'm curious about the journey of others in relation to diagnosis of their conditions.
I'm currently in the progress of some further testing myself in an attempt to pin down the reason for my chronic pain and other symptoms.
Please share if you like. What was the hardest part of getting diagnosed? What was the easiest? Are there any groups or resources you have found particularly helpful during your diagnosis or afterwards? Anything else you wish to say about being diagnosed or that you wish people understood about your illness?
Thanks for sharing.




(short version) In a way I'm lucky, my extended community has a fair number of spoonies. So after a few years of doctors saying "it's not thyroid so ?????????" and my symptoms getting unmanageable, a few friends and acquaintances helped me work it out.
Then I went to my new doctor and said "I think I have Fibromyalgia and here's why" and she said "yes, looking at your history and l agree here's a treatment plan."
It's always nice when they listen
The worst part is having so many questions and the doctor doesn't know what to tell you. Every answer makes more questions in your head. I wish someone had explained to me not to overdo it on good days, ie "pacing". I was always told to do it but nobody answered when I asked what that meant. I didn't care about the blood tests and being poked and prodded, it was my rheumy ignoring my questions and leaving me in the dark on whether i had lupus or not and just making me get on the bed and show off my bendy joints to students that was the worst part of my first few years. my new rheumy doesn't do all that shit and answers my questions the best she possibly can, reassured me I do not have SLE but will keep testing me for it.
SLE is one of the things I'm being tested for as well. I think the most bothersome things I have experienced have been being told I'm too young for such and such a symptom and being treated like I don't understand what I'm told. They can clearly see my birth date on the chart but I find it insulting for them to judge. I also feel I'm treated like a drug seeker even though I don't ask for pain management based on my appearance. Frustrating.
Thanks for sharing. And best of luck with your ongoing journey.
Push to be accepted into a pain management programme similar to what we call STEPS in Australia. I wish I had been sent there when I was first diagnosed. When I was a teenager, a doctor straight out lied to my face and told me she was going to refer me to a pain management clinic at the children's hospital... it didn't exist, no such clinic, there were no doctors specializing in chronic pain. I felt like I was treated as a human pin cushion half the time and like I shouldn't know about my own health and don't deserve to get help the rest.
\Push for the pain management clinics even if you have to go far away for it, I don't regret going. I learned so much about pain and why it might persistent years after an injury heals or your initial illness ends. Everything I should have been told when I was first diagnosed. It gave me hope, like someone handing you a candle in the dark. I felt like I could manage my pain better and not live from one dose of diazepam to another.
ANA came back positve. Have a referral to a rheumatologist, clinic doctor said it sounds like Lupus but to wait until I see the rheumatologist.
Things are looking up. They managed to sneak me in with the rheumatologist at the end of July. I had initially been told it could be 12-18 months wait list...
My diagnosis journey was like leaping off a cliff. Healthy twenty-something year old with no history goes in for routine mammogram. Stays for 8 hours. 6 big needle pokes and a bunch of fancy tests later, I had to go home with the news that it was definitely abnormal and wait a week to get the call that it was for sure cancer. It was so fast and such a curveball, I think that's why it felt like a cliff leap, or like stepping into a life from some other me's time-travel timeline. It's been 6 months though, and with a good prognosis, I feel pretty good now most of the time.
Glad to hear you've been feeling better.
So I got in to see the rheumatologist today (cancellation listed). Still no answers. Apparently my organs are "fine" so I don't meet criteria for SLE as suspected. Dr suggested physio for back pain (because that is totally going to help my joints in my extremities right?) poked me in a bunch of muscles and said fibromyalgia but that it is from not sleeping properly or enough. I'm at square one. Said to get thyroid checked again... We already know it's one of the medications I take for a suspected mental health issue that is making my thyroid fluctuate (going to ask another doctor about discontinuing that). Apparently the fact my symptoms started before the sleep disorder and such doesn't help get things figured out. I'm exhausted I hurt and I'm frustrated.
What do I do now?