Getting a diagnosis for my pain
Hi everyone!
I’m a 32 years old woman who is trying to put a name on the pain that I’m living with and I feel that many of my symptoms might lead to AS.
Pain started slowly 10 years ago in my lower back, diffusing to my left leg and foot but it was not constant; same with my neck, left shoulder, chest, left scapula, left arm and thumb. It was not intense nor constant In the beginning.
As the years passed, the symptoms began to be more and more present and after my two pregnancies, it became worst and chronic. There’s no time where I’m not in pain and there are days where I get very painful flares and I when I have trouble concentrating, holding my phone or driving for example.
Every morning, I wake up with stiffness in my back and I need to get a good rub and stretch and massage my back before getting out of the bed. Also, my ribs are hurting when I press on them.
My doctor did not seem to take my condition seriously for years and then gave me a reference to see a physiatrist. The latter did a cervical and lumbar mri that showed small degeneration in some articulations and small hernias in the lower back and he did not give me a proper diagnosis. Now I’m seeing another doctor that says that my pain is more sacroiliac related and cervical+From a few thoracic vertebrae. I’m happy because the last one believes me when I explain my symptoms but I’m still a little frustrated because I don’t have a name for all that (to be able to have answers, exchange with a community, explain what you have to your family, colleagues and friends who don’t understand that invisible pain and think that you are feeling good only because you are smiling).
Do you feel familiar with my symptoms? How did AS show up in your life and how did you get a diagnosis? Should I ask any questions to my doctor?
Thank you very much and I hope that you all find ways to ease your pain <3
Hello
and !
I indicated that I will keep you posted on the evolution of my quest. I finally found the way to see a rheumatologist and I had some blood tests and an mri done. Don’t know the blood tests results yet but I saw that the mri report suggests chronic sacroiliitis. I’m starting to think that my belief that my symptoms are similar to the AS symptoms description is not Crazy. I’m having an appointment with the rheumatologist in a few weeks and will keep you updated 😀and , my rheumatologist contacted me earlier finally and after 10 years of hearing my family doctor saying that I was ''just sleeping in a bad position'', I finally have a diagnosis! It is axial spondyloarthritis. I had the right suspicions and did the right thing by contacting a rheumatologist by myself (I could not get a reference and just took a chance by contacting him and explaining my situation and he took me in charge - Some people are amazing and do their job for the right reasons. From now on, I will finally be able to try some options and hope to find some relief 😀 😀 Some people might see the diagnosis as bad news but in my case (and I believe most of the members of this website will understand me), I see it as a blessing because you finally know that other people will understand you and you can explain to your loved ones that your pain and fatigue is not imaginary. 
I am so glad for you. Congratulations on getting a proper diagnosis.
Thank you very much for your answer, I really appreciate it! Absolutely, it’s the first thing that I say to every doctor or health professional that I see (I tried everything and nothing worked)!
I will ask the doctor and hope that he’ll accept to give me a reference to see a rheumatologist (fingers crossed).
I will certainly let this community know what comes next. At least, I finally found a doctor that takes me seriously and that’s a big step.
Thank you and happy holidays to you and your loved ones
,
We're grateful you found this community and appreciate you reaching out.
It sounds like you are headed in the right direction and it's great to hear you found a doctor that is listening to you. As Rick mentioned, many in this community have found a rheumatologist helpful in diagnosing and treating their AS. Always know this community is here for help and support. ~Doreen (Team Member)I wish you the very best. Happy holidays to you and your family............... rick (moderator)
Also, pain is worst when I’m sitting or trying to sleep; I tried many things (chirp, physical therapy, acupuncture, etc) and meds and nothing solved the issues.
One thing that does sound like AS is that nothing seems to help it. Often I have tried everything is the first thing we say to our doctors. After that, I would have to say that likely no two or more people have the same symptoms.
AS is just so hard to diagnose or categorize that we simply cannot classify the symptoms. I suggest that if you are concerned you visit a rheumatologist. Often those of us with AS have cast about for years hoping to find a diagnosis. We try many things and nothing seems to work. Because of the multiplicity of symptoms I never try to compare what I had to what others have. Since I am, not a doctor (or at least that kind of doctor) you would not want me to speculate about a diagnosis.
I hope you will think about visiting with a rheumatologist and after you do, perhaps you will let us know what is determined. It will likely take MRI's or X-Rays, a physical exam, and perhaps some alternative treatments.
I look forward to hearing what you might find. I wish you the very best...... rick (moderator)
