Hi to you all. I have so many questions-I have read some of your posts and I have to say the pain you all deal with is unimaginable. I am a 34 year old mom of 3. I had a blood test last week and the test came back positive for Ankylosing Spondylitis. My concern or uncertainty is that I have NO back issues at all.
I first started seeing a dr b/c my 4th toe started swelling and itching very badly. After 5 months it moved to my 4th toe on my other foot. A few days later my 2nd toe developed a red hard bump-I am so confused!
Hindsight here-I occasionally have a hard lump that appears for no certain reason right on my ankle. It feels like I might have sprianed it but it just comes with no warning. It is a bit sore to the touch-my knee on the same leg is very week, walking up the stairs can occasionally put strain on it.
I am not overweight and don't work out vigorously b/c I get migraines so these things that happen are really, truely out of the blue.

Can someone post some of the first signs of thier AS or RA-whatever you might have-I really have a hard time believing it can be AS but experience knows best-thanks!!!

Hugs to you all!

Hi Mama,
I have AS and have had it for around 16 years. At first it started in my lower back I just thought it was strain from picking the children up and it only hurt the once. Then it went to my knee (l) after I pulled the medial ligament it just stayed swollen. I didnt have pain at all and they said to just leave it and see what happens. For the first 10 years I was basically normal just had discomfort here and there but paid it no attention. It then went to my right knee and it swelled all the time. I would also get a pain going down my legs to my toes from my hips when they would swell. I had an asthma attack in 2004 due to moving offices and 20 years of dust and from the chest xray they found that I had AS. I then have started the roller coaster ride of medications. You name it I have probably had it. I do know however that every AS person is different. 90% live with it normally for most of their lives just getting discomfort here and there. 8% can get it quite severely that they are more disabled with it and for 2% it can be very servere that it can affect the heart lungs and bowels. I now am in that unfortunate 2%. If I exercise when I am good I get worse if I do nothing I get muscle wasting it is really a strange condition. I am blessed as my family are wonderful support and you need that support and understanding. It is now in my shoulders feet and elbows I hope it stays away from my hands as I love doing my craft work. I have also noticed that ovulation and menstrual times seem to be my worse. Dont let the condition own you. I am not going to say stay positive (because that drives me insane) but stay focused on what you want out of life and if you want it bad enough you will get it. Hydrotherapy is great and watch your diet.
If you have any questions at all please just ask them. Your not alone.
Kind regards
Olivia :)

Thank you so very much. Part of me thinks the test is wrong-as I am sure everyone has wished at least once. I am not sure what the specialist will do next week but I am trying to just focus on the family. My back has been hurting for 2 days now but I am pretty sure that it is b/c I went dancin Saturday night-although I am not sure why I would have hurt it doing that! Anyway, thank you!!!

Hi Mama,

Yes I've been there too. I didnt think they had it right then I thought well it isnt going to affect me so I am not going to take anything for it and if I just ignore it it might just go away. So I did for three years just taking pain killers here and there and ignoring the little things I couldn't do anymore. I left it too long though and am now paying for it. I'm a nurse so I should know better.
When you say that the test came back positive do you mean that you have the HLA B27 gene? That can also be RA. My back although fused very rarely gives me any problems its mostly my legs and knees. My back will hurt if I do something I shouldn't but most of the time it gives me no problems. The test for AS is if you cant touch your toes. I can only just get my fingers below my knees so try that and see if you can touch your toes.
I hope you are ok.
Kind regards
Olivia :)

I cant remember the exact letters that the test indicated a positive response. I keep thinking I will just wait till I have bigger issues or something happens that makes me really need to go in. I tried and Yes, I can touch my toes. I have also read that it could be RA also-Ihave read so much that I am now confused as to what does what. I know I should go to my appt with the Rheumotologist next week but I just dont want to start taking meds if I really don;t need to:confused:

Hi Mama,

Wow you sound just like me. My specialist recommended I go ont Methx and I said no I will keep going with my pain killers and that is what put me in the 2%. I tried alternative medicines everything but I had to get past the fear of medication to get a good quality of life. I can't tell you what to do or what it is I can only tell you what I have been through and experiencing but with AS everyone is different. Go to your rheumatoligist appointment and go armed with all your questions and your fears. Dont leave until you are happy. This is your body your life to them your just another patient. (another european holiday lol). Get a second opinion if you need to. I wish I had of.
Take care
Olivia :)