Gretchen Bergman

I'm 53, dx this year with AS. Started with bilat achil. Tend. At age 30, Always ached, over the years i had what i now know were flares, I'd sit hunched up and cry as my whole body "hummed" with pain. New pains, weird how it keeps moving around! Neck, grinds and pops, lower back gets like a cramp, sensation of pulling down, have to sit for it to go away. I'm a nurse, so this is hellishly inconvenient, if i don't sit my back goes numb, like shot with anesthesia, thoracic and lumbar. Any ideas?

Asked by Gretchen Bergman 3 months ago add tags


Rhonda Trimble
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If you are going numb in your back, it is possible it could be due to mechanical issues with your back.  I have multiple herniated lumbar discs and degenerative disc disease.  I believe is secondary to the AS.  I would call the rheumy and hopefully he is smart enough to call for an MRI to take a look.  Hope this helps.

by Rhonda Trimble 3 months ago

Pamela Peterson
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Have you talked to your Rheumatologist about the latest problem?  I would start there for sure.

by Pamela Peterson 3 months ago

Cindy Clark Barta
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Gretchen I also am 53 and went miss diagnosed for many years actually since my late twenties. Have had the numbness more often on one shoulder down the arm into the hands up under inot the arm pit, I tend to get it when over use or sitting at PC to long. I also have a tens unit which I use when traveling long distances. But when I get numbness I apply heat and it tends to stimulate, I use heat patches when I can not use heat pad or get into hot bath like at work. I also carry activon roll on with me at all times in fact soon as I get this response done I am going to apply it to my elbow and wrist for heat relief.
You can find lots of great information on this site, thing we experience different symptons, different things to get relief and information on medications.I was diagnosed at 51 so the first year or so learn all you can and work with the AS and all its different crazy symptons and for back up on new sympptons check here!

by Cindy Clark Bar...  3 months ago

Catherine Terry
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You have a diagnosis. Yeah! Now you can deal with the chronic inflammation that is causing all the symptoms you described. I am currently in remission after a 7-year flare cycle. There is hope! A TENs unit helps me by, surprisingly, causing numbness in my most painful areas but the e-stim also helps to reduce inflammation. Maybe you can talk to your doctor about adding that to your routine. You can wear a TENs unit while you're working. Make sure you have AWESOME supportive shoes, too.

by Catherine Terry 3 months ago

Alice Zeller
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I too, am a RN, I work ICU,. It is an difficult. I try to sit when I need to, take special precautions, try to limit the amount of time standing still doing dressing changes and other activites at the bedside. That is when my back aches the most. I am taking ENBREL, so I use the masks when I am with someone who has a Respriatory Infection. Take your medication as prescribed helps, but still, on days off I sometimes need a Vicadin or two. Good Luck to you.

by Alice Zeller 3 months ago

Geraldine
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I dont have the numbness but I, have the pain thats weird, thats AS for you.  You got to do what you got to do, sit, stand.  You need to talk to your rhumy about these things also, thats where your going to get help.  I have gotten the cramp sensation in my upper arm to my elbow a couple of times, went away fast after my last infusion, don't know why but I'm greatful.  Good luck to you.

by Geraldine 3 months ago

Peter Sorley
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Hey, Im 37 not as bad as you are, but everytime I sit at PC for more than an hour or so I get the same strange sensation around lower neck nd left shoulder, If I touch the area I cant feel the touch, also I lose the ability to turn head to the right so def connected with head being in same position so long,

by Peter Sorley 3 months ago

Jerry Grynspan
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I'd take numbness over the stabbing pains I get any day. Frankly a medication list would be helpful. Without knowing what you were already doing it's hard to make suggestions. Are you taking nsaids? Which one? How about dmards? And of course biologics. Do you take relaxants or analgesics? Lots of things affect how AS will affect us and blind suggestions are less than helpful.

by Jerry Grynspan 3 months ago

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I'm 53, dx this year with AS. Started with bilat achil. Tend. At age 30, Always ached, over the years i had what i now know were flares, I'd sit hunched up and cry as my whole body "hummed" with pain. New pains, weird how it keeps moving around! Neck, grinds and pops, lower back gets like a cramp, sensation of pulling down, have to sit for it to go away. I'm a nurse, so this is hellishly inconvenient, if i don't sit my back goes numb, like shot with anesthesia, thoracic and lumbar. Any ideas?

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