What is the scariest symptom or complications of axSpa?
Getting an axSpa diagnosis and experiencing the symptoms can be truly frightening. In your opinion, what is the scariest symptom or complication of axSpa?
I have lived with arthritis all my life starting with JRA (I missed kindergarten because of arthritis) and was diagnosed with AS (HLA-B27) in my late 20s; I am 76 now. The years haven’t been kind, but I truly believe I am going through the roughest time right now. I am fiercely independent and a loner. People get on my nerves. I am not the tiniest bit social. I cannot bear the thought of assistive living or an in-home helper, but my cervical spine is compressed and causing horrible headaches. I can tolerate them but the compression has pinched the nerves to my left arm and hand. I am struggling to get around one handed. I used to get injections but am now on blood thinner. You can’t inject the spine when on blood thinner, or so they tell me.
I see an OT once a week and have consulted with specialists. They haven’t been able to offer anything that will help. The arm and hand just keep getting weaker.
So, unless these pinched nerves let up a little, my independence is in jeopardy. This crossroads is possibly one step too many.
Oh friend - what a journey you've had. I am sorry that things continue to worsen for you. I understand what you are going through. I'm having surgery soon to decompress the cervical spinal nerves causing pain and tingling in my left arm and hand. Doing things with one hand is terribly difficult. I keep dropping things and find my arm getting weaker and weaker as the months go on. Can they not offer you an RFA (radiofrequency ablation) where they burn the nerves? I'm having an extension of my cervical fusion to get those nerves untrapped and the discs from pushing on my spinal cord, though I am 20 years younger and still at an age they will take me to surgery. I send you strength to endure this crossroads. Give yourself the grace to move forward and choose the right path for you during such a difficult time. We are here to listen and support you. Thoughtfully, Rebecca (team member)
The pain
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We hear you. The pain of AxSpA is like no other.
How are you managing these days? ~Doreen (Team Member)
Tendons and cartilage dislodging from bone.
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Oh my goodness, that sounds quite painful.
Does that happen often? Is there anything that helps with this or is it strictly rest?
My best to you, Doreen (Team Member)
Oh how I understand this. Been dealing with enthesitis for a while now and it seems to be settling down with my JAK inhibitor. The inflammation has calmed. It took a long time for my hamstring to heal from ripping from my pelvis. How are you managing this? Hoping all is well - Rebecca (team member)
Yes, I appreciate yours and Richard's comments. Will check out the list of possible doctors not at Dartmouth. Thanks, Rebecca....
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We wish you all the best in your search and hope you will keep us updated.
Warmly, Doreen (Team Member)
