Hi, I'm Sadie, this is my first post and I would like to share my history and ask for a bit of advice, as I'm just in a bit of an emotional rut
. Like many of us, I'm just having a hard time knowing what to do next, and how to best help myself.
Just for a bit of introduction, my rheumatologist has not told me that I have AS, though the term has been given from the medical assistants in his office to me and my GP, I believe that technically he has termed my condition as spondyloarthropathy (undifferentiated until something happens to turn it into AS). I am HLAB27 positive and I have a family history of RA and autoimmune disease. That being said!
I have been taking ibuprofen in high doses daily for almost ten years, and occasionally before that for maybe 2-3 years. There were several months that I took it in dangerous doses (way higher than recommended doses) because I didn't know any better and I was desperate for relief. I'm 29 now and I was much younger then. I took Humira for 5-6 months last year and it was not working ( though I believe a flare was beginning when I started it) and about 6 weeks ago I began remicade (2 doses) and so far I can't tell if it's helping. My rheumy wants to begin a DMARD when he finds out if my liver is okay. My enzymes are elevated and I have pain in that region so he's ordering an ultrasound.
Anyway, my pain seems to be in so many places. When I was about 7 I started having chronic UTI's and kidney problems, I also had occasional gastro issues but nothing really serious. I had a bad viral infection at 11 that caused leg weakness and I had to have PT to gain mobility again. Around this time I started getting headaches and migraines that have never stopped. I noticed a lump in the back of my neck around that age as well, and after feeling around noticed that my spine protruded more right under the base of my skull to the left, and I've since noticed some growth and that others don't have that protrusion. Doctors aren't concerned so I'm probably worried for nothing.
Joint pain started when I was fifteen or so in my knees, then around 18 in my low/mid back. Then it got worse around 21 in my back, and I started to get stiffness. Around 23 the sciatica started and hit hard and I had morning stiffness with it (you know the kind that you have to roll/fall out of bed) but I didn't know what was happening and I often wet myself before I could get to the bathroom. It was really scary and upsetting as I didn't know what was happening and that any symptoms were related. At the same time I began having a hard time with my heels and I would walk around on my toes. About 24 or so I started getting pain in my wrists and shoulders. Some time around this point my knees started getting really bad and started swelling a bit. I also began having some (nerve?) pain around my thighs, bottom, groin, patches of burning, I would constantly check the areas for rash because it would burn so much. Around 26 the outer left hip began getting really sore. I began noticing that my extremities (especially my feet) would fall asleep or become tingly for no reason. My finger joints began to become affected as well.
This past year at 28 pain has started to become worse in my middle/upper back, the back of my neck, the right side of my ribs (wrapping from the back around to the front and worse when I breathe in, though the rheumatologist thinks this doesn't have anything to do with the spondy), horrible HORRIBLE stomach aches, a separate pain that's just below my ribs that my doctor thinks could be my liver, and fatigue worse than ever before. Just this year in January muscle spasms from my mid back up to my neck have started first occasionally and now are frequent.
I have expressed to the rheumatologist my major concerns, and I answer questions, but I feel like he expects the biologic to work and he doesn't understand why the first one didn't work and the second one hasn't started to work yet. I want sooooo badly to stop taking the ibuprofen but the pain is uncontrolled without it. I've started a low starch diet because nothing is helping and I'm so desperate for relief, I do think it helps when I'm strict with it, but my doctor just seems to dismiss that. I take a muscle relaxer in a low dose at night too and I use a heating pad while I sleep but that's all.
Obviously just like everyone else I just want to be able to reach a functional level of pain control and I would love to do that without the ibuprofen because I really feel like it's slowly killing me. I know it's a little dramatic
. But these stomach aches are horrible... There were a few times that I was throwing up with some blood coughing with some blood a year or so ago and they wanted to do an endoscopy and I chickened out. So I don't know what's going on inside there. I feel like my joint problems and AS/spondy complications are progressing way too fast, probably really paranoid. The medical assistant at my rheumatologists office just keeps telling me it's a flare because I keep telling her how much it hurts and how tired I am, how terrible it's been lately and that I just want to be a good mom. I can't tell if it's a flare or if everything is just getting worse really quickly all at once. This is really long. I suppose I'm just hoping someone can give me some advice about how to stop the ibuprofen and feel better. I am constantly on here and reading everything I can about AS and besides dieting, I feel like I'm just not in control of my own body anymore. It's just so frightening.
Thank you, so much, for reading this ridiculously long post, I know I'm not great at forming a concrete question but I'm sort of lost and wandering so if someone has been here and can point me in the direction I should be taking, I'd be so grateful. Thank you thank you!