Not got gene but a lot of symptoms.
Hi
After a few days of a flare up of pain I broke down crying this morning. I have been told for years I have fibro but the symptoms of AS seem more fitting. I don’t have the gene but believe the pain and spinal issues seem more like AS. I have what I can only describe as a burning sensation mid spine along with pain. Leaning forward slightly to eat is excrutiating. I also have tendon pain in my heels which makes them really stiff, I have sacroiliac joint dysfunction and had injections which only worked for a few days. Pain and numbness in my elbows to my last 2 fingers, especially when carrying a bag or sleeping. Horrible bowel pain and constipation, hip pain shoulder pain, rib pain, cramp in my feet mainly when I go to bed at night. Wrist pain, finger pain, knee pain, pain where my tendons join my bones. Getting up in the morning is the worst when my spine is so stiff. Stress makes me worse and seems to flare me up. I have had 3 surgeries in the past for spondylolisthesis at L5 - S1 and have pseudo arthrosis in the bone graft. I’m fed up, doc keeps saying fibro and I haven’t seen a rheumatologist. Does anyone else have the burning in their mid spine as this is the worst for me right now and do you think I have fibromyalgia or is it more like AS. This post sound like a ramble so apologies..
Spine surgeon said DDD. But he didn’t know about my other symptoms nor did he ask.
Hello!
I hate that you are feeling so much pain. So, I am in your shoes. I was seeing a rheumatologist that didn’t send records to pain management because I had a positive ANA and fibro. I was having all kinds of pain. I forced the GPS hand, described my pain and demanded x-rays. I couldn’t hardly walk let lone work. What came back was horrendous. After a spine doctor met w me and said I have 4 vertebrae self fused, 2 bulging discs, 2 scoliosis, and it was due to breaking my back. I e never broken my back. Had my GP x-ray the rest of my spine, it has 3 more bulging discs nd arthritis in my neck and mid back. The spine surgeon SaidPlease fight for your diagnosis! I was right where you are.
I was told for 15 years it was fibromyalgia but was diagnosed with AS last fall. I do not have the gene either. Take care and good luck.I find it hard to believe that this disease can go undiagnosed for such a length of time time. How do you cope through the day? Do you work? I’m struggling with fatigue all day right now as well as pain and my job is stressful. Phones ringing off the hook 9 hours a day, no chance of getting up to walk about much which helps with pain wether or not it’s AS or fibro I have. I haven’t had a chance to get to doctors yet. I’ll book this week, I can’t go on feeling like this 😕
Thanks for the replies everyone. I spoke to my GP last week to tell him how I’m feeling right now. He still insists on fibromyalgia and has prescribed me metformin, off label, for it. I’ve took a weeks holiday to start the pills as they can cause side effects. Apparently they will help with pain amongst other things and lots of people with fibromyalgia take them. I’m on day 3, no change in pain with sacro joints or mid back pain but I have had a couple of good bowel movements which I never have. It’s early days with the med but if after a few weeks there’s no change I’ll insist on a rheumatologist. As I’m sitting typing I have stabbing pains in my left heel and shooting pains down my upper arms, so sick of pain 😣 maybe it is just fibro though.
That sounds like a solid plan. I really hope you get some relief soon, but I'm glad to hear you're committed to getting to the bottom of this and seeing a rheumatologist if symptoms continue.
I think listening to gut instincts is underrated in our modern world, especially when it comes to our health. You know your body like no one else and are doing so well to be listening to those signs and symptoms and seeking out answers in the way you are.
Keep advocating for yourself and please let us know how you get on, we'll be thinking of you and are all wishing you well.
Warm regards, Anne-Mare (Patient Leader)
