Discouraged
I'm discouraged and don't know what to do. Im 38 year's old. Three years ago about a month after having a baby, I felt like I had been hit by a truck. I had a slight fever, felt like I had the flu, and was hurting every where. Also both thumbs were swollen for no reason. Since then, I have had chronic finger, wrist, elbow pain. I also have had Achilles tendonitis in both feet for the last 12 years ( I thought from an injury training for a half marathon). I have continued to have pain. Some days are worse than others but the pain in my hands has progressively gotten worse. Also, I now have SI pain ( x-ray shows Osteoarthritis). Two years ago there was no OA. Last month I began with neck and spine pain between my shoulder blades and tightness with muscle cramps in my back like Charley horses. MRI shows no swelling, joint or tendon damage in hands. X-rays said demineralization in fingers. I have not had a MRI for my back.
I have tested positive for HBLA, my dad has bamboo spine but refuses to see a rhuemy. My 15 year old has had uveitis and mild joint pain off and on for the last two years. My mom has Raynards. I have had labs multiple many times with all results normal except low iron and vitamin d. Also raised liver enzymes. I had a nerve conduction test for my hands that was normal. Hand specialist say my dip joints are stiff, and tendons have shortened in my hands. I have seen two rhumeys and they have prescribed me meloxicib, vit d and iron supplements. Meloxicib helps my back pain, but I can't find relief for my hands. They seem to not want to do more until i show joint damage or swelling or see something on my labs. They have not diagnosed me yet. Is this normal to not get a diagnosis? Should I see yet another rhumeys? Am I barking up the wrong tree? I'm not sure what to do anymore. I'm worried about having a AS but not getting treatment for it early could cause damage. What should I do now? Do I just wait now in pain until I show damage?
You have gone through so much. Your concern and frustration are completely valid. I hear you when you say that it feels like doctors wait until imaging shows damage to give a diagnosis and start treatment. While I don’t have any answers, myself and this community are here for you as you figure things out. I hope you find some comfort and relief soon 
Welcome to our site here at AxialSpondyloarthritis.net. You have been through the wringer - many in the community have gone through this or are currently. Your questions are valid and definitely should be addressed. Firstly, I am sorry you've been through so much pain and anguish trying to figure out what is happening to you. We are not doctors in this community and do not diagnose, but we can offer up our experience and disease journey to help support you through yours. Your journey so far is one of MANY here. There are articles and stories here to help you understand and realize you are not alone on this pathway toward diagnosis.
Your story is similar to mine. My father more likely than not had AS but refused to see a rheumy. We both had years and years of pain - tendon and ligament sprains and strains, hands throbbing and spasming, neck and spine issues, ankle and feet pain and swelling - all signs and symptoms of spondyloarthritis. Add in the positivity of the HLA-B27 gene and family history, diagnosis is more likely. Following treatment, I am managing much better.
You stated you are not showing any damage as of yet on imaging. When imaging does not show damage but AS disease is a possibility - a diagnosis of nr-AxSpA may be given by a spondyloarthritis specialist - rheumy/PT/other. After years of suffering, multiple spine and joint surgeries, I was finally given the diagnosis of U-SpA (unspecified spondyloarthritis - as he knew I had some sort of inflammation happening. Then after severe tendon pain in my arms I was given a diagnosis of nr-AxSpA. When imaging began showing disease progression, severe pelvis inflammation and a ripped hamstring, I was finally given the diagnosis of ankylosing spondylitis (AS/AxSpA). Here is a link to how these types all relate. https://axialspondyloarthritis.net/types
I know you are suffering and confused and frustrated and angry about not being diagnosed. For women it can take at least 8-10 years longer than a male, as this was thought to be a disease prominent in men, and rare in women. But that train of thought is turning around as of late, and more and more women are being diagnosed earlier and earlier, hopefully with less damage than those of us who had a late diagnosis.
How are your inflammatory markers? Mine were all normal levels until I had the flare of a lifetime lasting 5-6 years and then they started to rise, showing severe inflammation. Only then did I get a diagnosis at 46 years old. It began to escalate at 27 yo when I gave birth to my daughter.
Another issue that is a blockade to diagnosis may be comorbidities - other conditions in addition to possibly having inflammatory arthritis. I have osteoarthritis (OA), rheumatoid arthritis (RA), irritable bowel syndrome (IBS), uveitis (UV) and spondy (SpA) so it was difficult for the doctor to really decipher what symptoms were causing me issues and how to treat them, and what diagnosis should be given. I was complicated and stressing my physicians out, so they put it, which made diagnosis harder to achieve. This is the difficulty with this disease. Multiple symptoms, multiple diagnoses. Here is a link to other comorbidities linked to spondyloarthritis - sometimes they treat you for one comorbidity or others and do not put the puzzle pieces together. https://axialspondyloarthritis.net/comorbidities
I hope I haven't confused you with the plethora of information given. If you need to find more info - there is a plenitude of articles and forums in the community as well as on our sister site Ankylosingspondylitis.net After logging in, up in the right corner are 3 lines, click on those and a variety of subjects relating to inflammatory arthritis will pop down. Hope this helps. Sending you strength to carry on in your journey toward better health Rebecca (comm advc)thank you so much for taking the time to respond to me. My markers have been normal. I feel like I have read enough information about inflammatory arthritis over the last three years to fill many textbooks. 🤪Rhumys keep telling me these diseases don't follow textbooks. I guess that is where I struggle. I feel that my symptoms don't follow just one type of arthritis, it makes sense that it might be multiples though I have never thought of that. I fear having my body fall apart and knowing there are medicines out there that could help before it gets terrible. Thanks again for your insight and support. It is just nice to talk to someone who understands. It makes me not feel so crazy🙂 Sorry - Up in the LEFT corner are the lines. R
