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General Message Board for Ankylosing Spondylitis and Related Diseases
06/22/18 10:22 PM
I think I'm actually improving. My anxiety is much less and this dialogue with you and the other good people here has helped me tremendously. I've always been someone who's worried about the future even before I had AS. This disease will kinda force me to live in the now and change my way of thinking.

I do have AS. In 2012 after about 3-4 years of symptoms my x-rays showed erosion in my sacroliliac joint on one side. The rest of my spine was clear. I was put on Enbrel two months later and I'm still on it to this day. I barely had any pain until it started creeping back about two months ago.

My ROM is normal in my spine for all movements, and strangely my lumbar spine movement is even above average. I can touch the floor without bending my knees.

My neck has always been my main concern. It's the part that's most affected even though I didn't have any radiographic evidence in that region in 2012. I have about 80 degrees rotation to the left, 45 degrees to the right, with normal up and down and nearly normal tilt. But when I'm flaring it's the first section that loses motion. I always feel like my muscles, tendons and ligaments are very tense, almost calcified.

I normally don't have pain in my neck if i'm not stretching it while flaring. On a normal day it's just tight but painless.

I'm scared about my neck because I think it's the thing that people will notice the most. If you can't turn your head at all people start asking questions that I don't want to answer. And I think a stiff neck gives someone an odd look. It's stupid I know. And superficial.

Does your dad have any movement in his neck? Has he been fused for a long time?

Thanks for talking to me. Your posts do help. A lot. I wish you the best. smile
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/22/18 08:47 PM
Ok. So I have been flairing pretty badly and I figure my biologic may be on the way out. I was at the doctor looking for something to deal with the pain and while I had the option of pills, he recommended CBD Oil and said it's been good for some of his patients and that it would probably be better with less side effects.

I ended up with a prescription and used it for the first time this morning. My mind is absolutely blown. I have used it in a vaporizer, but on a day like this where I am one day away from my biologic injection, it's rainy and usually I am on two Tylenol arthritis and a 500mg Naproxen. I have had some cbd oil from a licensed producer and I am virtually pain free and have been sitting here getting work done all day. Usually I am sitting up, laying down, standing up, stretching, complaining, etc. Right now I am doing good.

I recommend trying the oil if you can get it.
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/22/18 06:08 PM
I went through this with Enbrel last year.

The website Needy Meds is a bit confusing to use, but its pretty good at finding discount and copay assistance programs for many medications and diseases. I entered Simponi and it pulled this up - http://www.needymeds.org/brand-drug/name/Simponi -- if you scroll down, it lists a phone number for people with Medicare to call. It appears there may be a program that provides assistance, dependent on meeting financial criteria.
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/22/18 05:28 PM
It's pretty much impossible to fuse in three months. I've never heard of it. Even when people start to fuse sometimes their X-rays barely show progression after 2 years.
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/22/18 02:17 PM
My insurance covered Otezla with a biologic, but I had to fail MTX and other DMARDs first (I have basically been on them all - MTX, Arava, Sulfasalazine, Plaquenil etc). Otezla has helped a lot with my feet. Both with my achilles tendons and with plantar fasciitis. And with ankle pain and swelling. I still have some foot pain, but even that is much better on Otezla.

The other thing that really helped my feet was wearing supportive shoes (sneakers) all the time, with custom made orthotics. A podiatrist can make them.
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/21/18 06:08 PM
Fingers crossed that Cosentyx will be your wonder drug.
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/20/18 03:51 PM
Massage helps me a lot too. Knots can also be trigger points. If you look up myofascial pain syndrome, you will find info about trigger points. They're essentially knots in the muscles which hurt a lot. Here is a link: https://www.mayoclinic.org/diseases-conditions/myofascial-pain-syndrome/symptoms-causes/syc-20375444

Additionally, if you are flaring, then your muscle often tense up to support your joints better. This can cause muscle spasms, which can be really painful. I have a horrible time with this - the only thing that works is massage and regular PT.
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/19/18 10:22 AM
quick question on symptoms:

do you experience muscle twitching in various parts various body related to AS?
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/18/18 03:03 PM
anyone have this issue on beta blockers, been on them for a while usually resting heart rate of 55 to 60 and now in the 40's out of blue. Echo is fine. Waiting on recent holter test. Previous holter fine. No symptoms. On the lowest dosage possible 25mg.
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