AS and Extremely fatigued and rib pain

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I have not formally been diagnosed but we are pretty close to it! My hip joints are so painful and my ribs feel like there all broke at times. The fatigue is almost more than I can take! I can't even walk around a grocery store without being extremely weak and trembling. My Rhumatard doctor left so I'm forced to start all over again with a new one. I'm taking Naproxen and Gabipentan but not much relief there. I was on prednisone for the rib pain and have been weaning down on dosage. Symptoms are returning! This is a dreadful disease! Is all I know!

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  • Posted

    Hi Karen,

    ?   Well, at least you gave me a good laugh.  "Rhumatard" is a new one but I cant say I havent felt that way at times.  I actually did get some relief from Gabapentin but that drug scared the crap out of me.  Gave me weird neurological symptoms like I was having a stroke.  Couldnt stop taking that one fast enough.  I also was given a dose pack of prednisone recently and had a similar experience as you.  The first two days when the dose was heaviest I actually felt some relief.  I was better upon waking up in the morning.  But I had no sooner taken the last pill in the pack and the lumbar pain came back with a vengeance.  You nailed it when you said it is a dreadful disease. 

    ?    Hopefully you can get a diagnosis soon which may open you up to some new drugs like the biologics.  They can be very successful under the right circumstances.  Best wishes and prayers that things change for you.

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  • Posted

    Hey Karen, hope you get a GOOD Rheumatologist soon.  Two things that got my diagnosis rolling were the HLA-B27 blood test AND a pelvic MRI.  Those two things nailed it and got me a diagnosis of AS even though I'm 55 years old.  But with my symptoms since I as 30 AND every doctor I went to telling me my pain was in my head, my journey has been a long one but I finally learned to advocate for myself.  I had to request the right blood tests and I begged for the Rheumatologist referral.  I was just diagnosed about 2 months ago.  After seeing my pelvic MRI and the inflammation there in my S1 joint on both sides, my doc skipped the NSAIDs and put me directly on the Biologic, Humira which my husband rather too cheerfully injects into me every 2 weeks.  Hasn't done much yet but I'm hopin' and prayin'.

    Wishing you the best!

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    • Posted

      Thank you so much for the encouragement! I am positive for the HLA-B27. I really feel this is what I'm dealing with. I have read extensively on it and have several markers of it.

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  • Posted

    Hi Karen, you have described AS so well...and we have all been there. Can I make a suggestion....if you feel exhausted....then sleep....go with what your body is telling you..Sleep does help with the pain. I gave up trying to do the shopping years ago...and now have to take two helpers with me...hard to find !, one to push the shopping trolley and one to push me...( sometimes she pushes me into walls and people too ! ) I can't use my hands very well and it is too painful for me to propel myself around the supermarket. So it's a major excersize to go anywhere. Just sitting here on my computer is the best I can do...but even that has it's problems...two fingers and they are so swollen that I press two keys at once, then have to go back and correct all the mistakes. Now, back to you...can you ask your doctor to give you some pain relief other than the meds you are on..those type of meds won't help with this sort of pain..and get yourself a hot pack which can be heated in the microwave...ask at your chemist/drug store. I found them so helpful. Do come back here and let us guide you through this...we are here to help each other...Hugs..G

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    • Posted

      You know somehow hearing from people that truly knows what your dealing with is comforting. Most people don't have a clue what you are even talking about. An I didn't either prior to all these problems arising. I just hope for a diagnosis soon so that I can begin the journey of learning to live with this gosh awful disease! Thanks for all your input! Hugs!

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    • Posted

      I am having to start completely over with a new doctor. The one I was seeing has left. This was so upsetting to me as I feel like I've lost several months of moving forward. But I'm working on getting established with another doctor as soon as possible. I'm so miserable at times and stay depressed. I've always been a hard working person. Not now! I do well to do what has to be done. I keep a heating pad on my back as much as possible. Hopefully I will get some help soon!

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    • Posted

      Hi Karen,

      Welcome! I'm glad you're finding some relief with heat. I've found moist heat to feel best.

      I'd like to mention that yes, heat can shrink the nerves and provide temporary relief. However, it can also cause inflammation (which causes AS pain.) Have you tried alternating heat/cold?

      Recently I was using ice packs throughout the day. A little research showed me cold alone was irritating my nerves, aggravating pain. I started alternating heat/cold. I was surprised and delighted to find the relief lasted much longer.

      What works for one of us doesn't necessarily work for another. I love hearing what helps others. It gives me hope.

      I wish you all the best with your AS journey.

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  • Posted

    Karen, forgot to mention, I also take 90 mg of Cymbalta for nerve pain and anxiety and the smallest dose of Abilify for Depression not covered by the Cymbalta.  Works pretty well.  I had flares of extreme pain mid back.  The Cymbalta made that disappear.  Haven't had HEAVY mid back pain, though lately, it does try to rear its ugly head now and again.  

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  • Posted

    You really need to do a MRI exam and HLA-B27 test as soon as possible.

    I did that almost 6 weeks ago and I have been diagnosed with AS after 6 months of horrible pains.

    But unfortunatelly I still have bad pains at SI joints and spine after all the medications I have taken (NSAIDs and others, corticosteroids injections, sulfasalazine en etc) and exercising. All that pills are afecting my bowel and stomach but I am forced to take them more time, at least 6 months. I hope the pains will go away because I am already depressed and not able to handle my job. I wish you a lot of health and find a cure that suits your body!

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    • Posted

      I have been tested for the HLA-B27. Positive results on that. Maybe when I get in to see this new doctor he'll order an MRI. I've been dealing with all these symptoms for 8 months now. My back and ribs have almost made me completely immobile at times. Plus I have two herniated disk in lower back. But somehow I'm gonna get out of this gosh awful way of life now.

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