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type of arthritis do you have? Ankylosing Spondylitis (Arthiritis of the spine). It's where you spine can fuse together because your immune system attacks the small tissues around the joints at the spine and causes bone growth in those spaces so the spine can fuse.
were your first symptoms? My first symptoms were actually hip pain very severe and then the pain radiated up to my ribs one night and I woke up and couldn't breathe. I have pain in my mid back all the time. Also my sternum will hurt. My hip pain is now gone though.
were your first symptoms that you could visually see? No I don't "look" sick.
age when you noticed symptoms? Mid twenties.
age you were diagnosed? Late twenties and I was very lucky to even get diagnosed in the first place. I went to my orthopedic doctor who I already had a relationship with for other issues. I told him about the hip pain. He orignally did injections into my hip a couple times. Didn't work. No real evidence of damage on my xrays. Then the pain went up to my ribs and I went right back in to him. He then had a clue due to that one scenario. He took a blood test and I was HLA B27+ and that's how he new. I then went to a rhuemtologist to begin treatment. I also have a diagnosis of fybromialga (sp?) as well. Pain from that is in my shoulders, knees, elbows, neck. I've also had neck surgery already due to disk hernia probably due to AS. I go to a chiropractor as often as I can for my mid back to keep it flexible. I also take Humira to try to keep the immune system from attacking my body. Also a couple other meds to help me sleep for healing.
Hope this helps. Do as much research as possible and find a good doctor. I've come to learn that there aren't good rhuemys out there. find a hospital doing research on your type of arthritis that is where all the good rhuemys are and they can get you the best meds. Get all the tests you can.
If you have any questions, please don't hesitate to ask
Nicole 36, living with AS for probably 12 years now. Still working full time and trying to be the best mom I can to my lovely daughter.
Oh and by the way, it does not run in my family. No one has ever heard of it, nor does anyone have any clue of what I go through. It's just lovely having to live in silence with my pain and put on a happy face every day, when sometimes I just don't want to get up that day.
I was dx'd with fibro, but I REALLY REALLY think it has something to do with my back. Well ok that sounds stupid, I have back pain muscular, nerological etc along with other issues... but I swear there is something going on in my spine that is causing the majority of these problems.
Arthritis, OA & RA both run in my family both sides actually... I have arthritic growth on some of my knuckles in my hands. Dr told me the pain in my sternum was arthritis but never fully investigated it. I'm sure it doesn't help he's a FP doc either.
Speaking of spine fusing, I have spurs on allot of my vertebrae that the chiropractor pointed out just from a chest xray I took him that I had done a couple months before seeing him. It hurt so badly when he'd sdjust me and after months I chose to stop because it was actually hurting much more than helping.
I'm sorry my mind is all over the place... But I want to thank you for your experiences. I'm constantly trying to figure this out because no matter what I don't think "fibro" is my main problem... it has to be something else as the root of all of this that they haven't figured out yet. Fibro mught be an accompanying issue like the u/c.
My rheumi does sorta stink, he's a kind person and has optimism that with the right combo of meds I would feel better. But dangit I tell you what I do not have fibro as much as they want to tell me this for a few years now, I do not and have not responded to any fibro treatments what so ever (neurontin, lyrica, savella, pristiq, cymbalta, celebrex, daypro, etc etc)
My mother was dx'd with MS but only by an MRI, she is convinced that would help them figure things out.
Do you do any sort of chemotherapy like methotrexate to reduce the inflammation?
I have lupus. My symptoms started after my 2nd son was born. It started with fatigue and pain in my hands and feet. Occasional bursitis in my shoulders and hips that would require steroid shots. Then they realized I had kidney disease. Still no diagnosis of lupus, but the kidney biopsies showed autoimmune kidney disease. It took 6 years of different combinations of immunosuppressants and steroids to get the kidney disease under control. Finally I found a rheumatologist that said....you have lupus. No positive blood work, but I went my rounds with the different rheumatologists before one finally said yes, it's lupus. I've had inflammation of my pancreas, I had an inflamed gall bladder removed at the age of 17. I've never had labwork come back "positive" for lupus. I even had one rheumatologist tell me that I can't possibly have an autoimmune disease because one specific lab didn't come back positive. And I looked at him and thought..."HELLO!!!! TWO POSITIVE BIOPSIES!!!!!!!" What an idiot and I have not been back to see him since.
After my recent bout in the hospital, all the docs talk about "my lupus". It's crazy how rheumatologists work. I think that if they are in a field of inexact science that they should be prepared for inexact cases and deal with them appropriately...of course that's just my thinking. I guess they would be thinking differently if it was them that had to deal with what we do.
I'm currently taking Imuran and prednisone and will probably start back on plaquenil shortly.
I have a sister who has sero-negative rheumatoid arthritis. She takes a combination of Enbrel and methotrexate to control her disease. She still has her good and her bad days.
My mother has nodules on her hands and will be finally seeing a rheumatologist in February.
My mother also has a brother and a sister with blood positive rheumatoid arthritis.
Celena, what is your SED rate? Have you had that checked yet? And ask for the blood test HLA B27, if you are positive, it's a good chance that it's Ankylosing Spondy. And yes, some people can't tolerate the chiro either. It puts them in a flare that lasts a long time. I am lucky that it really helps because I have no visible signs of AS yet. No damage to my spine yet, just symptoms. Sounds like you already might have damage. So chiro may be a no no for you. But ask for the blood test and ask what your SED rate is (any rhuemy would have done that blood test). If it's high, your inflamation is high. Has nothing to do with fybro. so that is the best guess they use to DX arthritis. But if you have visible signs on your knuckles, my goodness you must have some DX by now.
I have not tried Methotextrate yet. They normally do that in combination with Humira or other bioligics. I do Humira but have no gone to Methotextrate yet. I'm a pretty mild case actually, no visible signs of degeneration yet of my spine, so we are just managing the inflamation in the body right now to help with pain and fatigue. Plus massage and chiro work really well for me. Deep tissue massage works really well, I just can afford it as often as it's needed.
Celebrex is crap lol! They even put me on a high dose of cymbalta and I didn't like it. Messed with my head too much, had to go off it. And it didn't work for pain. Nothing works for pain really. I do take mobic and it helps, but not alot. Trazadone works well to help you sleep well which helps with healing.
I would also recommend a referral to a pain clinic. They can try some things as well. They are more tuned to deal with your pain. A rhuemy is not all that interested in treating pain because they don't want to go down the pain med road. But if managed properly, pain meds are ok to get over a flare to get back on track. Along with other pain management techniques. Rhuemys are not trained in that area, so they will not be of any help. I learned that as well. As him for a referral to a pain management clinic.
If your mid back hurts along with neck and shoulders, it could be AS. The blood test will help DX that.
* type of arthritis do you have? I have psoriatic arthiritis. I have had psoriasis as long as I can remember.
* were your first symptoms? After DD was born my back was so painful and stiff in the mornings for about 3 weeks straight. Went to chiropractor and thought it was b/c I had 2 kiddos under 18 months old, etc. But it didn't go away, then knees and various joints were hurting.
* were your first symptoms that you could visually see? None that anyone could see, just what I could feel.
* age when you noticed symptoms? I was 27.
* age you were diagnosed? Same.
Does it run in your family? No, but psoriasis does.
type of arthritis do you have? rheumatoid in my hip and knees
were your first symptoms? That i couldnt walk until 3years old and i cried in pain constantly aparently one of my first words was hurt
were your first symptoms that you could visually see? Not being able to walk
age when you noticed symptoms? 12 months
age you were diagnosed? 18 month
Does it run in your family? Yes through all the women
If so, what type? or both? Both and Lupus