I have had AS severely for a few years now I am taking Simponi as well as pain...

%d comments
  • Hi. Your story sounds similar too mine. My problem is that so much damaged was caused before a diagnosis was made and despite biologics and pain meds, it really is a case of managing daily life so I'm able to function and cope. The strain on the other undamaged parts of the spine and other joints is huge and causes high levels of fatigue, just doing the basics like walking, sitting, etc. I've found that exercise is by far the best way of managing this bastard of a disease. The key is too start very slowly and monitor your bodies reaction too it and make progressions as your body starts too respond to what your doing. Resistance training to strengthen, cardio to ease breathing issues and gentle stretching to improve posture are the route to take in my opinion. I had to stop going to the gym for a year or so and my condition deteriorated rapidly. It's not easy but getting the right balance of exercise and mess is the way forward. The people out there hiking, etc probably have much less joint damage, fusion, etc than you have and probably get a much quicker diagnosis.......though I may be wrong

  • What are your symptoms? Autoimmune diseases run in packs and also there are complications with them all. Also something that is hard to come to terms with is the fact that it effects everyone differently. I have a very high pain tolerance yet last night I was balling I was hurting so bad and today I am stuck in bed. I have AS, SLE, RA and no thyroid so I am literally getting hit from every angle.

  • Sounds right and just started exercises a little while ago and it does help . The pain medds are a crutch that I'm kicking. I want to start competitive shooting again and golfing and long hikes with my kids. Almost get tears saying it . It's good to hear perspective thanks

  • I hope your day gets better and I get the over doing it its the story of my life . I hope there's remission and breakthrough for you as well

  • I know exactly how you feel, I've a 6 year old daughter who is really understanding of what Daddy can and can't do. Doesn't stop me feeling guilty that I can't run around with her and participate in days out, etc. Good to hear you've got those goals.....keep the faith!

  • Sounds like me as well. I have AS and was diagnosed with degenerative joint disease in my hips. A million meds I'm on it seems and now I started spinal injections to help me walk. They hurt so bad but after a few days I have started to feel so much better!

  • Hi Leighton, for me I was treated for PsA for several years with enbral before moving to an osteoporosis dx over 4 years ago, and 2 months after the low bone density came the A.S. dx. Face and body swelling was severe with pain. Was on Forteo injections 2 yrs and one Reclast infusion that lasted for 1 year after Forteo to elevate bone strength and density. I've had environmental allergies since childhood, and 5 months ago was tested for Celiac plus tested for food allegies. Negative on Celiac, however came back positive to "wheat" allergies along with a peanut & walnut allergy. Eliminating these foods have helped my breathing, stopped a constant cough and acid reflux as well as an irritable bowel syndrome. Been on Remicade since the A.S. dx around 4 years ago. The osteoporosis lead to my starting to fuse in several area's of spine, mostly in SI, Lombard, and upper Thoracic spine stopping at base of neck. With regular x-rays highlighting when fusion started after the low bone density, and a new set showing remission of the fusing in mid 2015. Through physical therapy for 3 years, that kept me standing straight from a leaning that was off and on during increasing bone density. I still golf, though can't take a full swing like I used to, and can't bend down to pick up anything on ground unless in a squat style. After a year of the fusion showing no development, I was able to have my D.O. primary physician break loose some calcification of the lower Lombard and SI joint without any know aggravation of the inflammatory mechanism in that area. Wouldn't recommend this if still in the "hot" spine stage of the "active" auto-immune inflammatory response. I've never stopped working in sales. While I am walking and doing more things better now, I have a mixed bag of feelings about A.S. It definitely draws down vitamin D to a level of the low bone density condition in over 50% of active A.S. patients. (Check your bone density) Treatment through a Rheumatologist is best for sure, although as you are also trying to figure out other causes as I did, you will want to get tested for Food Allergies as well as Environmental Allergies if you have similar symptoms as I did. With osteoporosis, every time I knelt low to the ground for 30 seconds or more, it felt like bending "wire" to get back up in a standing position. The food allergies that I have feels to me like they contributed to the several arthritic conditions I had over a long period of time, even a potential long term "trigger" to A.S.. The Medical field say's that your Environment plays a roll, a factor, as a possible cause of A.S. ...""without ever giving any specific cause to us" other than they are unknown..... while our doctors only treat multiple symptoms, and farm us out to other specialists. And to me these triggers or causes are working indoors or living in a State without much natural sunlight, allergies (food) affecting the "immune system" that when combined with the HLA-B27 gene type causes an "auto-immune response over time", as well as any injuries at work or in sports, and whatever else you feel may cause. You know your body better than anyone, and finding similarities in symptoms with others can be a great help, however, everyone is different. Don't stop the gut feeling deep inside, keep investigating and surprise even your doctors. I also have tried facet joint injections and they help....and still golf occasionally.

  • I'll talk to my doctor about the allergies tests I'm going to also ask about breaking loose of calcification . My doctor is real good and listens well about my issues. Thanks for sharing

  • You may print and give him my reply is you wish. Become active with the Spondylitis Association of America. I lead a support group in the Lansing Michigan area. Join an educational group that they sponsor. Self education and support groups are highly recommended as a treatment guideline. www.spondylitis.org

  • I have Fibromyalgia along with AS and it acts like a pain magnifier.

  • I also deal with multiple issues, AS RA Hypothyroidism. I am sorry Leighton Cameron, I haven't ever heard any of us with AS use the term "remission". It doesn't exist as far as I have seen or heard. Although pain management is possible and many of us have had success in that area but it is different and difficult to for sum to achieve. Keep reading others posts and try whatever you like and don't give up.

  • Xxxxxxx Yzzzzzz do you have info on the Lansing group? We are in Ludington

  • Leighton if I may add. The majority of us with AS have food allergies. I personally have made many diet adjustments. The biggest thing that took half my pain away is organic Apple Cider vinegar "with the mother". 1 table spoon in 6 oz water every morning on an empty stomach. Chasing that with 10 oz of fresh water befor breakfast. It took 3 weeks to start working but I haven't skipped a day since. Man does it help. From what I have read ACV pulls excess calcium out of the system but not out of the bones so slowing the fusing of the joints and spine. Keep up on your research and positive up building attitude.

  • I will look into the apple cider vinegar the positive up building is my daughter .thanks for the info

  • Dan posted a link Beth Harechmak McMaster to find the information you need.

  • Leighton Cameron it was just the national organization. Was looking for local

  • Xxxxxxx YzzzzzzMaster We hold our meetings at the Better Health Food Store mostly, yet have changed places and days to test which works best. The National link has a "Connect With Others" area that with map the entire U.S. Here is a direct link. http://www.spondylitis.org/Lansing-Support-Group

  • Xxxxxxx Yzzzzzz thank you!!

  • Xxxxxxx YzzzzzzMaster

  • Just sent Todd a friend request.

  • Xxxxxxx Yzzzzzz thank you Dan. My husband and daughter both have AS.

  • I wish them both the very best and am always glad to see anyone's children get an early dx of this... That is Key, along with self education while staying positive and strong for them.

  • Xxxxxxx YzzzzzzMaster keep in mind, getting tested for Celiac is performed by an upper GI scope and biopsy. Being tested for food allergies is entirely different which is performed by an Allergy and Asthma Clinic with a 60 panel of needle pin pricks just under the skin on back, then waiting 15 minutes to see which food you have allergies to. It's the easiest way to rule it out, and pin point exactly what food items to eliminate. Wheat is in tomato soup to thicken in the can, and many other items that are usually unknown...or non suspecting. Wheat is Gluten, so ruling out Celiac disease doesn't mean you don't have a wheat allergy...... Not all Gluten Free Items, are wheat free...

  • In the U.K., and London, wheat was researched as a trigger to A.S., in which the U.S. would not honor this research (all about the money here, and treating symptoms) Which is why I took the route of getting the medical testing through an allergist. https://www.youtube.com/watch?v=ZFFmqH66ORM

  • When you have AS is it true that a flare up is when you're in pain because you are fusing? Or just ( and I don't mean just) inflammation ?

  • Leighton Cameron

    Just came out of wanting to die period. What you need to mentally prepare for is fighting without any feeling of improvement. It will come. But it does not come quick. Won't sugarcoat it. It's a Bitchfuck! Your main enemies will be Pain, Fatigue, Depression along with feeling like you have the flu with symptoms like diabetic nerve pain in your feet, fibromyalgia pain in your muscles and Rheumatism pain in your joints with a dash of IBD in your gut and Uveitis in your eyes. You now have to fight for your health and quality of life. Hang in there and fight when you can rest when you can't. Let everyone in your life know that you won't put up with no shit

  • Everyone is at different levels. I was a Trauma Nurse and had to take a desk job. Then I was home on disability and then fired. This disease has slowed me down too. My twins are 7 and I feel guilty all the time that I can't do everything I want to.

    I pick my activities wisely.

  • I have experienced a lot of these and it's been a fight for life but with my kids love and support I have knocked down some walls. I get it Matthew and your not alone text anytime . A lot of us have been there.

  • Again I understand I lost my job then a court battle lost my marriage and came out strong . I am on long term now with joint custody and doing good but what a fight . still fighting . Try not to feel guilty my 7 year old teaches me so much about patience and understanding . I hope all works well for you too keep fighting.

  • Indeed. It is why we stick together.

    It is a particularly cruel disease.

  • I can tell you to lose the guilt. But it impossible not to grieve over the death of a thousand cuts. That will always be there

  • Love you all

    All for one

    One for all

  • Pain wise, I've found medical marijuana the most helpful. Of course, if u have kids, that might not be a good option. I used to be super active, backpacking and running. Now, I take a lot of walks and swim and do Pilates. I defiantly think having lived a super physical life before can make your AS symptoms worse. I have had to change my mindset about activity. My goals now are simply to be active (a good walk, a long swim) 4-5 days a week. I find I need more recovery time now. Pilates are great and can be safer than yoga. You've got a good attitude and that's the most important thing, honestly.

  • My first experience with AS put me in the Hospital with a shot of demerol a moth before my 19th birthday. They did not diagnose it for another 34 years. I used Marijuana and always believed it was the reason I was able to accomplish as much as I did. Not a full blown stoner. Just a couple toaks here and there to keep moving. Last year there was a article in Spondylitis Plus magazine. It said the same thing. I thought shoot I've known that for 30 years!