I have struggled for 10 years with Hashimotos, also an auto immune disease, for the first part or 2016 I was in excruciating pain in my lower back, around my tailbone area. I always put the pain down to muscle soreness as I am a weightlifting coach and have been a master fitness trainer for over 20 years. I actually found my own disease. I had gone into the ER about a year prior with a suspected kidney stone, and they performed an MRI, which showed no stones but a very bad bladder infection. I was released with antibiotics and pain meds, (which I never took, i hate pain meds)
A few weeks later I was online looking at MYchart, which is where all my tests went, I was reading over my MRI, and noticed the words Ankylosing Spondylitis. I immediately googled it. I thought surely this is serious and a doctor will be contacted me soon to have some tests run or at least get me on some form of treatment plan. This did not happen, another 2 months went by and I took matters into my own hands. I made an appointment with my primary care and the first thing i said when she asked what she could help me with, was to ask her to please pull up my MRI results and tell me if I should be on a treatment plan. She looked at them and immediately referred me to a rheumatologist. However another 3 months would go by until I could actually get in and see her.
Finally the day arrives to see her, my husband is with me and again she asks what she can do to help and again I say please pull up my MRI results. After she looked over them she sent me that day to X ray and to the lab, I had 33 X rays taken and 16 blood tests, I was to come back for the results in 2 weeks, and she sent me home with celebrex and said if the pain was too intense I could go into X ray and have two shots in my back, thank you Doc but I will stay in pain was my response.
Two weeks later I come to the office with my husband for the results. Now prior to this I had been struggling with my weight really bad, something I have never really struggled with, I had ballooned up to almost 200 pounds and I was miserable, especially because I was doing everything right, I am a coach I am a nutritionist, what gives?.
So result time, I tested negative for RA which was my biggest relief, however yes 100% positive for AS the x rays showed complete fusion of my SI joints and partial fusion of the lower lumbar area. My white blood count was so low, My inflammation markers were through the roof, I had arthritis in my fingers, I was a mess, I could not even sit down correctly.
She looked at me with the saddest face she was so sorry it seemed to be giving me this information. I could not hold in my emotions any longer and I broke down right then and there. She told me she wanted me on Humira right away and it was going to be for the rest of my life. Great I thought, this is a biologic drug that is pretty much like chemo, oh and the side effect is you may get lymphoma cancer!!! More devastating news, I was already on 4 medications to regulate my thyroid and progesterone levels. The first few weeks were really hard, the pain from the shot was sometimes too much I would scream so loud. I quickly learned how to give myself shots in my stomach because I knew how much it was killing my husband to see me in pain.
One night I laid in bed and I could not sleep, I knew right then and there that if I did not take control of this now it would be out of control and too late, so I decided I was going to be the face of AS. A strong representation of what your body can do when it is strong. the first thing I did was clean up my diet to the point of it being rigidly strict, no gluten, very low starch at first. I started back lifting weights, but I dropped all of my old numbers back to very light weight and I focused on my form, making sure my core was always tight. I worked to strengthen that first. I then started to strengthen my glutes, I got stronger everyday. I had owned my own crossfit gym and sold it and was really taking time off from anything crossfit as it had consumed so much of my life for almost 4 years. My husband suggested we join a crossfit gym again just for the community, this time not as owners but just members, I was so against it at first, I had my little gym in my garage and I was happy with that. I know that he needed the community too and I was just being selfish, so one day I got in the car and drove to some dear friends that own a crossfit gym in the area we live in and we joined that night. I stopped stressing about what had happened to me and I focused on being the strongest version of myself I could be. Before long the weight started to drop off, but muscle replaced fat. I do not do any cardio as that presents a whole new set of issues with adrenal function but I am happy just lifting. I am 45 years old and I would say I am in the best shape of my life right now, and I competed in so many fitness competitions years ago, but today I am strong mentally and Physically, that’s the difference. I started a group on facebook, called Strong women with AS, it has over 300 members, I put out videos to help women work out and feel good about themselves again. I refuse to lay down and let this disease ravish my body, fighting one auto immune disease is hard, fighting two is a bitch, but I am a tougher woman than any disease and today I feel amazing.
I could probably write a book on my experiences with auto immune diseases, but I am happy to share my story here now.
Texas, United States of America