Horrendous Hip - Thanks AS

  I don't know if other Ankylosing Spondylitis fighters experience worsening symptoms during cold weather, but I certainly do. For several weeks my left hip has been keeping awake at night. I can not lay on my left side due to the pain. Which leads me to try to sleep on my right side all night. Some nights my right hip feels like it may start hurting and I turn to my back. However if I sleep on my back very long, my lower back feels like it ceases up. Plus as an embarrassing side note, I snore horribly if I sleep on my back. At least that's what my husband tells me. Another incentive to not sleep on my back.

  The other day a friend called, I told her how bad my hip was hurting. She said "oh, so you can't walk with it hurting so bad''. I told her actually I can walk, it's the only thing that helps the pain. She seemed confused. I can't explain it myself. It really doesn't make sense to me either. When the pain gets to a 9.5 on a 10 scale, I can not sit or lay down. I have to move. I will be crying and moaning but I have to pace back and forth in my living room. If I sit down the pain is unbearable. I don't understand what is going on with my hip but I know it sounds weird.

  I use ice packs and aspercreme to try to alleviate the pain. I actually tried a Tens unit on it Sunday but that was a terrible idea. The pain started radiating down my leg to my knee. I've also tried heat and massage. Normally, I love a massage but my hip was so tender I almost screamed when my husband starting massaging it. So I am learning what works and doesn't work.

  I have a rheumatologist appointment next week so I hope she can inject it or something. Do any of you have experience with similar hip pain? If so, what helped you. I am desperate for some relief.

  I hope you have a pain free, joyous day.
  Gentle hugs friends! 

I Made It Through The Holidays

  It's official, I survived the holidays! It was a busy, crazy, go-until-you-drop December.
During the month of December, I finished my loading dose of Cosentyx. Therefore I went through much of the month without an injection. I feared the change from a weekly injection to a monthly injection might spur a flare. I can't say I felt the energy I loved during my weekly injections but I did survive.

  As some of you know, I went for weeks without any biologic medication waiting for insurance approval of Cosentyx. Mid-December I had an appointment with my rheumatologist. She looked back at my lab work that was performed during my "off the biologics" time frame. They use my CRP and my Sedimentation Rate to monitor my inflammation levels. They hope to keep my Sed Rate under 20, but they really prefer under 15.  It was no surprise to me, due to my pain levels during that period, my Sed Rate was 51. I have no idea the level of my rates since beginning the Cosentyx, however they must be lower since my pain is not as overwhelming. It really amazes me that my pain levels can be so intense that it shows in my blood.

  For all those naysayers that think pain is all in your head, I wish you could see the lab work of those of us who experience unbearable pain. If the pain was all in our heads it wouldn't show up in our blood work.

  Ankylosing Spondylitis is not a figment of our imaginations. It has no mercy for age or gender. It attacks us physically and mentally. The mental anguish from a life we remember to a life just fighting to survive a day. AS destroys our bodies, from our spines fusing to our inability to bend and move as we once did. Ankylosing Spondylitis doesn't stop it's progress for Christmas, birthdays, or other plans we make. It causes us to cancel dates with friends or family. AS can make taking a shower a huge feat of energy depleting challenge. If I was told as a teenager that one day a shower would result in my needing to lay down and rest, I would not have believed it.

  All I can say at this point is enjoy the days you have energy. Make the most of your time with family and friends. Love yourself, even on the hardest days.

  Gentle hugs to each of you fellow warriors and to our caregivers. May you have a good day.