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Does anyone know if it's possible to have the pain element of AS without fusing showing? I have the gene, and have been suffering pain in my neck, shoulders, ribs, lower back, hips and down left arm and leg for last few years - MRI scans show no sign of fusing. Any advice would be great, thanks.
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It is absolutely possible, it would likely be diagnosed at this point as undifferentiated spondyloarthropathy , or SPA. Meaning the inflammation and symptoms are there but the radiological evidence is not. It can take up to 10 years for the tell tale signs of fusion and joint surface damage to be visible on diagnostic imaging. MRI and/or a nuclear bone scan can help to detect the inflammation that is present in the early stages of AS.
I hope this helps!
Lindsay
I hope this helps!
Lindsay
I think it is possible that some people have a form that take a long time to fuse or even possibly do not fuse due to fitness and lifestyle.
I have x-rays showing fusing of the SI joints over a period of ten years (from nothing to starting to show fusion), however other joints that hurt do not show anything. Neither do I show increased inflammation levels in the blood, I have had over 8 blood tests over the last ten years, none have tested positive for inflammation. The amount of pain is very real but I am extremely active, I play competitive high level sport 4 times a week (netball) and go to the gym 4 times a week. I'm on a walking holiday at the moment and have a lot of chest pain and I think it is due to not doing my normal routine of sport, walking is an 'easy' activity for me! However I know for a lot of AS sufferings they would be happy to walk like I am doing.
For me it seems to be a case of push myself all the time otherwise I just seize up...I'm like the tin man in the wizard of Oz! ;)
Try to do as much stretching and sport as you can manage, it hurts and you feel knackered but I do believe it will help you in the long run from fusing up. Clearly this will also depend on how active your AS is on what you can manage.
I have x-rays showing fusing of the SI joints over a period of ten years (from nothing to starting to show fusion), however other joints that hurt do not show anything. Neither do I show increased inflammation levels in the blood, I have had over 8 blood tests over the last ten years, none have tested positive for inflammation. The amount of pain is very real but I am extremely active, I play competitive high level sport 4 times a week (netball) and go to the gym 4 times a week. I'm on a walking holiday at the moment and have a lot of chest pain and I think it is due to not doing my normal routine of sport, walking is an 'easy' activity for me! However I know for a lot of AS sufferings they would be happy to walk like I am doing.
For me it seems to be a case of push myself all the time otherwise I just seize up...I'm like the tin man in the wizard of Oz! ;)
Try to do as much stretching and sport as you can manage, it hurts and you feel knackered but I do believe it will help you in the long run from fusing up. Clearly this will also depend on how active your AS is on what you can manage.
I had pain for YEARS before my fusing began. Hopefully your rheum is good and understands that it is possible. Good luck and many blessings of healing heading your way.
Same with many others above: Many years of that type of pain before fusing appeared.
I have the pain and don't have fusing, and I hurt in all of those same areas as you. I have been testing my food now, not for starch but for general intolerance and since I have I haven't needed the stronger meds. I do still take lortab but getting massages have really helped and seeing a good chiropractor is even better. I don't think everyone shows signs of fusing but I don't think that their spine looks totally normal either. Good luck seeking your answers.
Thanks Joyce, how has the food testing gone? Have you had any sucess? Been getting massages frequently for last 4yrs and no better off longterm (if anything more painful) but do get benefit for about 24hrs lol. Thanks for the advice and hope the food testing works.
I have foun a lot of foods I shouldn't be eating that I was eating a lot of on my NSD like eggs, cucumbers, mushrooms and cantaloupe. But also found I was ok when I ate stuff that I thought was not good for me such as flour tortillas, some pasta etc. Once I cut out the foods my pain went away. Here is the link to read about how to do it on my blog. livinglifewithas.blogspot.com/p/energy-testing-yourself.html
Good luck :0)
Over 12 years of pain but no fusing. Hopefully with treatment it will stay that way minus the pain part. No pain or fusing at this moment.
Yes, I think that's typical. My spine doesn't show fusing yet, but I still have massive pain.
Yes like other it not only happens but is very common. I have a very aggressive disease and I'm fully fused except C!-C2 and I'm 50. You can have bad fusion and it won't show up on an MRI but go back to the good old Xray and it will better identify bone fusion. The MRI test are better at seeing other changes and soft tissue problems (dsics) etc.I suffered through 20 years of bad pain before the spine fused and that happened 10 years ago over about an 9 month period. Good luck.
I have the gene and severe damage to my cervical vertebraes. They have talked about fusion, but want to be able to turn my neck without my entire body~~ My left fingers/hand/armgo numb constantly and now it is affeting my right side because the nerves of course are entraped. I am putting if off as long as I possibly can. My shoulder tendons/muscles on the left side are affected...my knee goes out and sometimes takes me to the ground ~my daughters think that's kinda funny at times! This is just a little bit of some of the issues I have. Being positive for the gene....I have constant pain on top of my "normal" pain" with my migraines, etc. Anyone else have anything like this??? Is this what I have to look forward to for the rest of my life? I am currently not on any type of medication for the positive gene. I maintain with pain meds, fentyl patch, soma, and tramadol. Any ideas...suggestions.... ANYTHING?? Kinda to the point of desperation on how to deal with this daily pain.Tonya
Hi Tonya, sorry to hear you're struggling so much, my Dad was the same with his leg giving out. Have the docs been able to sort you out with pain meds to help you manage the pain? My understanding is that fusion is last resort but 'normally' once the area is fused the pain should go (the pain's your body attacking itself). But everyone's pain is different, and its just trying to find a way to cope. Knowing you're not alone in it has helped me, but still gets me down at times. Just can't let it beat you and try to keep busy to distract yourself. Hope that helps and you get some relief soon.
