Ankylosing spondylitis: anyone else?

Posted by kelsey1 @kelsey1, Aug 25, 2011

i have been suffeing with muscle and and joint pain for longer than i care to remember. it started out with fibromyalgia and now they thonks its either rheumatoid arthritis or ankylosing spondolytis but herein lies the problem i have all the symptoms but nothing is conclusive. the pain continues to worsen and i don't know what to do has anyone had similar problems?

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@zildjiangirl

I've had chronic hip pain that took about 5 years to get diagnosed as ankylosing spondylitis. The only things that have really helped me are Enbrel injections and oxycodone. Unfortunately I am incredibly tolerant and dependent on oxycodone but it's the only thing that touches the pain. I would just looking into something like Enbrel and having an MRI done of SI joints. My pain is still horrible and controls my life but before Enbrel, I could barely get around and at my best I was constantly on crutches.

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Enbrel did nothing for me, I'm 33 and have AS. Nothing is working b/c all the medications prolong the damage from the disease. Does not cure it. Sorry but it's true.

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@rosestea

Hi, I am new but I am here to find others who have AS to talk to besides my family.

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well, I am sorry to hear you are struggling to get diagnosed. I went the first 5 years diagnosed wrong with Osteoporosis. I was not diagnosed until 2002 with AS. My SI joints hurt the worst in my lower back it feels like the bones are rubbing together when I do not have my meds. I have problems with fingers swelling pain and stiffness in my back, neck, ankles and feet. it is not as bad now that I am on Embrel, Methatrexate and an anti-inflamatory. I have been told there are 2 types of AS the kind that affects more the limbs and the other the spine. Mine and my brothers is the spine. My son seems to be having other types of symptoms. His feet on swell to extremes sometimes also which I have not had happen. Plantar Facitis is another problem we all have due to AS. It causes the bottom of our feet to hurt. I go every three months for shots in the bottom of them. I'm not sure if any of this helps. I really hope they can help you.

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@rosestea

Hi, I am new but I am here to find others who have AS to talk to besides my family.

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There is a blood test for AS, they test of the HLA-B27 gene. I never had any good diagnosed with regular doctors, I went to a rhumatologist and he knew right away. He says he could tell just by the way I walked. He did the blood test and I was positive for HLA- B27. I've had the pain since I was 13, now 48. I am mostly concerned with the side effect of all the drugs that are suppose to help. I don't want to trade one problem for another.

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There are blood test for each. I test positive for AS and negative for RA, I also have Osteo (diag. for x rays)

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@rosestea

Hi, I am new but I am here to find others who have AS to talk to besides my family.

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I just been diagnosed with Ankylosing spondylitis. I have been suffering with back pain now for over 7 years. I have developed other problems every year. I now have chronic kidney stone disease, chrones, chronic broncos, and a few other things. I have dealt with pain and sickness almost my whole life. I am now 22. I am happy to finally know what was wrong but I am scared and worried about my future. I need help understanding things so I can relax. If there is anyone out there who can help it would be greatly appreciated. I will wait. Thank you for reading my post and for your help.

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@rosestea

Hi, I am new but I am here to find others who have AS to talk to besides my family.

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Hi my name is Nora. I am 22 and have just been diagnosed with AS as well. I am wanting to find someone who I can talk to that understands I love my family and they try but they don't really understand my pain. I feel they think I am being a drama queen sometimes.

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@rosestea

Hi, I am new but I am here to find others who have AS to talk to besides my family.

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Hi, I'm sorry you going through all of that and especially at your age! I have chronic pain for about 10 yrs now, I'm 30. Today I was actually trying to find things with my symptoms. I came across A.S and was wondering if that could be my problem? I mean I have a long list of diagnosis but out of 5 doctors not one has helped. I did have epideral shot a few weeks ago. It helped for 2wks. Anyway I came across AS and remembered I have a younger cousin that was diagnosed when he was 24. He was hooked of morphine but now is off and getting shots. His bones r fusing together...hes only takin the shot called...Sinphony? Not sure how its spelled? I hope you start getting some relief now that you know what's wrong. Best of luck!

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@rosestea

Hi, I am new but I am here to find others who have AS to talk to besides my family.

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Thank you so much. I hope that figure out what is wrong I know what it is like jumping from doctor to doctor. I hope your cousin is doing ok, or as ok as it he can be.

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@rosestea

Hi, I am new but I am here to find others who have AS to talk to besides my family.

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I have suffered with pain from Ankylosing Spondylitis since I was 13 years old. Unfortunately, I diagnosed myself at the age of 26, by my own research. I even started having bouts of the related iritis at the age of 21. I started taking Enbrel, in fact, I am featured on their website and publications. I've recently had to stop taking, so I'm struggling again with intense pain in my thoracic and lumbar areas of my spine. AS is a tough disease, and you must be your own advocate to have success. I'm now 30, and it seems that the pain has moved from my toe to my knees, to my hips, to my tailbone, now my lower to mid back, shoulders, ribs and kneck. Kinda feels like fibromyalgia pain. Many spasms. Good luck and God Bless You, I hope your AS becomes manageable for you.

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@rosestea

Hi, I am new but I am here to find others who have AS to talk to besides my family.

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Wow I had my first flared up ay the age of 21 the same exact pattern like yours. I was mis diagnose too many times but am taking enbrel seems to work am 40 and feel good the best of luck to you . The best thing not to be I'd under stress that's when I flared up the most . Lori

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