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How do you know if AS is in remission?

Posted , 3 users are following.

Backtome
Backtome

Hey all.

My CRP, ESR and ANA are all normal. No signs of acute sacroillitis in recent MRI but some damage due to chronic inflammation.

Generally I feel better than I did 3months ago. No fatigue, no fever, sleeping through the night, no night sweats, vision is normal, stomach has calmed down etc

But my back feels hot to touch especially in the evening or at night and I'm still feeling with a lot of pain everywhere.

I'm trying to treat this through diet, exercise and supplemts because I can't take anti-inflammatories but how do i know for sure if its working? What tests should I be having and how often?

I havnt been officially diagnosed yet but 99% sure this is what I'm dealing with due to HLA-B27+, recent MRI results and symptoms over the past 3+ years.

Thank you ?

0 likes, 7 replies

7 Replies

  • gloria55119
    gloria55119 Backtome

    Posted

    Hello again....I too am feeling better no pain injections for a week now...still have "hot spots" especially at night..I can feel heat with my hand where there is pain but thankfully it is minimal at present. I think in my case it is being a little more active...wheel chair is getting dusty in the corner. I can walk a few steps around the house but not more than 10 meters at a time. I can cook a meal in the kitchen but sometimes have to call my daughter to come and rescue me if my body gets stuck..!! redface  One thing I feel is helping me is more sleep...The specialist has given me some mild sleeping tablets and now I'm ready for bed around 9 p.m....read a book till my eyes won't stay open..then get up at 8 a.m. I call that a good nights sleep compared with a few weeks ago. Being mentally active makes a lot of difference to AS symptoms....but....I'm sure this won't last for ever...I'm prepared for a slide any day now.....I realise that sounds defeatist...but that's how it's been for so many years now. So I enjoy the good times and take time out when it's not so good......enjoy your remission, keep positive. Only you can understand your body...go with the flow. Gentle hugs to you....Gloria

    • Backtome
      Backtome gloria55119

      Posted

      So sorry for your pain Gloria. Did it take a long time for you to get the diagnosis?
  • gloria55119
    gloria55119 Backtome

    Posted

    Hiya..the pain is spasmodic...comes and goes...gives me a jolt sometimes in the ribs and chest, radiating pain I think,,,coming from thoracic area...I have three discs damaged there and four on the neck and three in the lower back. Also spinal cord stenosis. My specialist says there is nothing more they can do for me but manage the pain with medication. I fractured my coccyx and two lower vertebrae after getting butted by a bull 30 years ago. Problem also with sacro area. Then got a whiplash injury to the neck in a road accident. That's when it all started. I was in hospital in traction for months. So now I get pain in the neck and shoulders..muscles there are like stones...radiating pain down my right arm, buttocks, right leg and my toes and fingers mainly all on my right side. Where I live is very remote and we do not have a rheumatologist here so my neurologist takes care of me when I need her. I was diagnosed four years ago after getting the run around from so many doctors,so called specialists, physios,alternative healers...etc..etc..Then two MRI's and numerous X Rays confirmed A.S. I would be interested to know if other people with A.S.get problems with their teeth and jaws..even eyes which are sore all the time. If I yawn, my jaw sometimes locks...Oh well....what can I say...but...all you sufferers out there..listen to your bodies, do what you can for comfort and if it hurts...don't do it...cry Hugs to you all...Gloria

    • Backtome
      Backtome gloria55119

      Posted

      That is awful. 😟 you have been through so much.

      It all started for me 3years ago when I fell pregnant. Not much pain but a lot of numbness in my legs and spasms in my back. During labor I discloated my tailbone. I was fobbed off and told it happens sometimes.. no x rays or mri, not even advice or a pain killer. It was very traumatic not knowing what the heck happened or why I was in so much pain. It all cleared up eventually and I thought I was okay but I had other health issues like constant sore throat, thyroid, fatigue etc

      Then the pain came back when I was pregnant again. The second pregnancy was really tough lots of pain. Then it cleared up with the help of physio but the pain came back when my son was 8months old. He just turned one and I just got results of MRI.

      I'm hoping I can control it or manage it through diet, exercise, supplements and acupuncture.

    • gloria55119
      gloria55119 Backtome

      Posted

      Hiya...I can certainly understand about pregnancy and giving birth can affect the spine and other bits too. I remember the birth of my youngest daughter..many years ago...I had three other children but I was a massive wreck with the last one...I could hardly walk, I was in pain from under my ribs to my lower back and pelvic area. I asked the midwife about this and she just said all women go through that...forget it.  When it came time for the birth...I struggled so badly and without pain meds...until finally after three days in labour, I gave birth to an 11lb 2oz baby girl the hard way. The biggest baby they had ever delivered..My health went crazy after that and I have never regained a healthy spine or the other bits too. I had a hysterectomy soon after. Carrying a baby is always a strain on the back...even before they are born...and as they grow. We tend to adopt a strange posture lugging a toddler around on one hip and I'm sure it has a lasting effect on our hips, back and legs too. Not to mention sleepless nights, trying to do things with one hand/arm..lifting, feeding and all those things that go with bearing children. No wonder they say that women are the stronger sex..( sorry guys )..As we had a small farm I was working on heavy loads, feeding animals, chopping wood,.milking cows by hand..etc..etc...and raising four kids under five years of age. Building a house out of rocks also took it's toll...my husband was working so I thought it would be good to show him how strong I was....ha..ha..So, it's been a hard life but a very full one. Now I'm semi retired and at age 71 I've been there and done that...I'm going to try to relax now...and go with the flow. I can do most things for myself.....but can't get in a bath even though I long for a hot soak in a bubble bath...I have trouble dressing myself...but now only wear kaftans so I don't have to painfully wriggle around getting dressed...I use my wheelchair for shopping and my daughter pushes me round the supermarket. So, even though my life is a maze of pain..I try to keep positive..The bad days, I stay in bed reading and with injections for pain....keeps my mind active...good days..I cook up a storm in the kitchen so that on my bad days..I have ready meals in the freezer and my daughter just heats them up in the microwave. I have learned out of sheer necessity. They say that necessity is the mother of invention...I believe that. Big hugs..G

    • Backtome
      Backtome gloria55119

      Posted

      Thank you for sharing your story ? it's inspirational that you still find jot and love after everything you have gone through. You are a strong woman

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