A.S. Face 2202: Cindy

Hello, I am Cindy. I’m 45. I was diagnosed with AS in 2013. I my diagnoses are AS, PsA, Fibromyalgia, Connective Tissue Disease, Hypothyroid, Chronic Gastritis, Gerd, Baretts Esophagus, Hypermoblilty and I have a compound heterozygous MTHFR mutation. I was always sick as a child. I was prone to sprains and strains and was in adaptive physical education in school. I always told everyone I had arthritis because I always had joints that hurt but none of my doctors would diagnose me with anything. The fatigue started when I was about 25. I had my gallbladder out about a year later and I felt so much better for about 5 years. During this time, I met my future husband and we got married and had children. After my last pregnancy I started falling apart. When I had my son I though my body wasn’t going to handle it. I made it through but my body wasn’t ever the same. My oldest was in taekwondo and it was in the mall. So I would take the 2 younger ones and walk around the mall while we waited. We did about 4 laps twice a week. After my PCP took me off my thyroid medicine (she said I didn’t need it) within 6 months I gained 65 lbs. (It took me 10 years but I have since found a great PCP that put me back on thyroid medicine.) I was still trying to get as much walking in as possible. Until I started limping… It came on suddenly and I went to the doctor and they sent me to an orthopedic. He told me I had arthritis. I was 38. He retired about a year after I started seeing him, I asked my PCP for a referral to a Rheumatologist. The Rheumatologist told me I have AS although I am HLA B27 negative. I was diagnosed by xrays and a MRI with an elavated Sed Rate. I have tried and failed 5 biologics and now have a PsA diagnosis and started Stalara. So far only 3 things have worked. Embrel helped me the best although not completely but I had a seizure on it. Prednisone helps but I gain too much weight. And Celebrex but I have to be very careful because I have a bad stomach. It’s a balancing act to keep my symptoms manageable. Sometimes my doctor and I have to start from scratch and try different combinations. If it wasn’t for my faith in Jesus, I don’t know if I could handle this dreaded disease. But I know He is always with me through everything no matter what I have to face. I know I am never alone.

6 Responses to “A.S. Face 2202: Cindy”

  1. Dear Cindy,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Hi Cindy I’m praying for you and all the rest
    of us.
    I have a few similarities with you. I know
    some days are sooo hard. I totally understand
    your faith in Jesus. Some days I feel like I’m
    hanging on by a thread. Thank you for sharing
    your story. My story is rather jumbled and too
    many illnesses to name and tell you what I’ve all
    been thru. I hope you have help at home. With
    little ones it can be even more drains. It can be
    hard to make it thru the day when you’re lucky enough to just concentrate on yourself.
    (By the way Cookies a pretty damn
    understanding young lady. She rocks !)

    Blessings to you ☮️✝️
    audie FACE 2200

  3. You have an amazing story of struggles and a whole lot of strength. May God continue to bless you with lots of strength as you continue this journey my AS sister. Much love and a big warm hug to you!

  4. Hi Cindy, Sorry to meet under these ccircumsstancces.. Fone is. Dying so plez forgive typos__it has mind of its. Own.
    It would be worth getinng chhecked for coeliac disease, as i have what. youvve menntionned, all Because 46 years undiagnosed coeliac disease. Also have to watch for osteoperoses and diverticulitis,hashimotes. N help or assist inntterresst. Aust.am. Hlab27 pass
    Have tried 7 biiolog, gettiinfg scary- loosing hope. Have good luck rrhhemuy, but no gp. Coming oofff gluten- lost 15kg in. 4 week, NO more miigraainees, oorr heartburn- if ii have No. gglutten — much. Better for joints

  5. Hi Cindy, lm feeling your frustration,
    Have you chhecked for coeliac and hashimotes – these go hanndd in hanndd.
    As, PsA, Sorry as you can see my. Phone is dying. Still tryingto. Acess email and from different deviicce.. Glad yyou hav your husband there with you. Will try again late.. All the best.. Keep up the great work. anna. Fellloow. AS, PsA,, rheum coeliac safe hashimotes — and Please geet bonus.take densiity test.. Takecare of you all

    • Sorry bonus tested.bone densiity. Vip.. Dont wait to find fone out by breakinng something.. Bleessinngs.. Glad. U hav fun your ffaiitth.. Mine. Seriously being hurt tested. Takecare all. We need Need to find a cure

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