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Patients Ankylosing spondylitis

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Member Carenity
Posted on

 I thought we could all gather here to discuss AS. I have read a lot testimonials from other members in the testimonial section and it feels good to realize that I am not alone in AS and not alone in experiencing and struggling with a chronic condition, like AS. 

I know there are more focused topics here on AS, but I would like to open a more general discussion with you all so that we can meet each other and better get to know each other.

I would be happy to discuss my condition with AS with you.

I hope to hear from any of you soon!

Beginning of the discussion - 12/28/18

Could we discuss Ankylosing Spondylitis
Member Carenity
Posted on

Great idea! Anyone else here struggling with losing muscle so quickly? I know it will go away because of my inactivity, but why am I becoming so weak and no muscle so quickly? what can I do?
 
 

Could we discuss Ankylosing Spondylitis
1

Member Carenity
Posted on

I am struggling with this also. It is happening so fast.

Could we discuss Ankylosing Spondylitis
Member Carenity
Posted on

Who here is suffering with nerve pains due to the detoration of our vertebrae and limited flexibility? Is everyone still able to sleep on back in bed? I still can seep in the bed most times, but it can cause me discomfort!

Could we discuss Ankylosing Spondylitis
Member Carenity
Posted on

Maria, my wife is suffering with AS for about a year but probably undiagnosed for much longer.  She is weak from inactivity but can't do PT or any real exercise due to the level of pain. She is up til the wee hours most nights and can't sleep but sleeps a lot during the day.  Not a great life.

Could we discuss Ankylosing Spondylitis
1

Member Carenity
Posted on

If you can get on Enbrel, I would recommend it.  It relieves a lot of pain.  They do have a support card with reduces the cost to something manageable.  There are downsides, but it does make life much more enjoyable.

Could we discuss Ankylosing Spondylitis
Member Carenity
Posted on

I originally tried Humira for 9 months when I was initially diagnosed, and unfortunately it made me severely depressed and the chronic hand and joint pain I couldn’t stand. I switched to Cymzia which was a difficult transition. Mood swings, weight fluctuation, crazy dreams, and lack of sleep. But after about 8 weeks I haven’t felt any better than this. Would highly recommend anyone giving Cymzia a shot! Unfortunately, due to the diagnosis it has grown my depression and still continued nerve pain. So I am also on cymbalta. I have minimal to no nerve pain left with the help of cymbalta. 

Could we discuss Ankylosing Spondylitis
1

Member Carenity
Posted on

I have alot of pain! I have literally don't know what to do no more. My rhuematologist is great, and she was first person to actually listen. The depression is bad. And because my husband can't see the pain he sure does not understand!! I'm on Enbrel, a fear of needles, but at this point I will try anything. I too am on Cymbalta, but they had to start Wellbutrin to try to get me over the hump.

Diagnosis was just 5 months ago. Is it ever going to get better?

Could we discuss Ankylosing Spondylitis
Member Carenity
Posted on

I was told that I have spondylosis feb 5 2019 can any one tell me what going to happen to me thanks

Could we discuss Ankylosing Spondylitis
Member Carenity
Posted on

I was officially diagnosed with AS in May of 2018. My father also has it. I hate that he hurts as well but at least we have each other and understand what we both are going though.  It broke my heart reading all of your comments on here. There are days where I am in so much pain, nothing helps and all i want to do is go back to bed and cry. Its so depressing!! Ive been on Sulindac off and on now for months, i absolutely hate the side effects. I feel bloated and stomach is irritated @Hidden username‍ can you tell me a little more about Cymzia? Anyone on Cymbalta can explain any side effects or how it makes you feel? @Hidden username‍ how are you dealing with pain and depression? @Hidden username‍ I understand how youre feeling! My pain seems to be pretty constant but can also come in waves. some weeks i feel okay. Others are miserable. @Hidden username‍ everything ive heard from specialists ive seen is that everyone is different and progresses differently with AS. 

Naturally i take Tumeric pills, apply cidar vinegar and other foods to help with inflammation. They do seem to help. I do acupuncture 1/mo and yoga 1/week. Stretching definitely helps, but some days its hard to even have energy or will to even want to do these things. Anyone trying CBD for pain? anyone trying other natural remedies?