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?
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.
Thank-you rhonda, and will be seeing my rheumy in a few weeks..have a great day! by Gretchen Bergma... 3 months ago
Well, had an mri recently of lumbar and sacral region...nothing new compared to my xrays..still no explanation for new sx...wondering if thoracic/cervical mri would have been a better choice..wish they'd just do the whole thing for a baseline, but they are so reluctant to...hope I don't have to wait another year for the upper spine!
Have you talked to your Rheumatologist about the latest problem? I would start there for sure.
I recently mentioned it, she didn't seem too concerned...although i am, it's a weird feeling to have your back completely numb, although still in pain from walking too long, recently had 20 xrays of back and neck, I got the feeling she didn't want to order anything else for awhile, but will see her again in a few weeks, thanks for your response, have a nice day!
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!
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!
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.
That is a great idea! I'll mention that, thanks Catherine. Glad you are in remission! The 7 yr flare is depressing!
That is a great idea! I'll mention that, thanks Catherine. Glad you are in remission! The 7 yr flare is depressing!
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.
Thanks alice, fellow nurse!
It's a tough field for us, isn't it? I'm trying to figure out how to make it to retirement age, it really is scary!{how will I pay my mortgage, etc} took a spot in a snf 11-7 a couple of years ago, it's quieter, more clerical, can sit when i want, but as i only have 1 cna we do rounds together, and, as you said, that bedside care is difficult! But, still better than the other 2 shifts! I took ibuprophen for 25 yrs, now am on diclofenac 75 mg bid ,which helps alot, and am trying skelaxin. Which i don't think helps, and am still trying to figure out if the cymbalta is making a difference at all.I am still living with a lot of pain, and am trying hard not to let it consume me, so i am trying to keep my life in order, but some days when i am comfy on my bed with a heating pad and the antiinflammatory is kicking in,i just don't want to move...the fatigue is always there...i long for the days when i could clean my house in one day! Thanks alice, hope you have a great day!
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.
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,
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.
Took motrin for yrs, now on diclofenac 75mg bid, have started skelaxin 80 mg at hs, and cymbalta 60 mg daily. Was just dx last fall, and yes, I also have pain. Saving dmards for later if I can. I was interested in talking with someone who could relate to the complete numbnessof a lg area of the back after overdoing, which is why I didn't go into other details. It's a scary new symptom. Thanks for your response.
Personally I don't like diclofenac. Combining low effectiveness with high rate of side effects, I didn't take it for long before switching back to indomethacin. I see no advantage to delaying the use of dmards and biologics. Unlike opioids they are not addictive and you do not develop the need for ever increasing dosages. They attack the problem at the inflammation level rather than the pain level so they may slow the damage and definitely improve quality of life. It sounds like a pinched nerve type of situation, with the pinch resulting from a narrowing of the channel the nerve passes through as a result of fusion. You cannot turn the clock back to before the fusion, but you may be able to reduce the nerve response with the dmards and biologics.
Sounds like stenosis? Recently had 20 xrays of spine and neck, and the rheumy wanted to wait awhile before doing other tests, but i really want an mri of spine/neck to find out more detail...gonna push for it in a few weeks when i see her. Xrays confirmed AS, showed DDD, DJD, curvature of the spine to the left??? But no real detail, although the rheumy was surprised i had as much flexion as i do after having it for so long, but took ibuprophen for 25 yrs, and i'm constantly stretching because it feels good! Pretty noisy tho. Yeah, i'll discuss the dmards/biologic thing with her, makes sense they'd provide relief and further damage...just trying to space it all out to make it to retirement age without running out of new options. Thanks for your response, i'll ask about the indocin too, maybe that would work better than what i'm doing.
Sounds like stenosis? Recently had 20 xrays of spine and neck, and the rheumy wanted to wait awhile before doing other tests, but i really want an mri of spine/neck to find out more detail...gonna push for it in a few weeks when i see her. Xrays confirmed AS, showed DDD, DJD, curvature of the spine to the left??? But no real detail, although the rheumy was surprised i had as much flexion as i do after having it for so long, but took ibuprophen for 25 yrs, and i'm constantly stretching because it feels good! Pretty noisy tho. Yeah, i'll discuss the dmards/biologic thing with her, makes sense they'd provide relief and further damage...just trying to space it all out to make it to retirement age without running out of new options. Thanks for your response, i'll ask about the indocin too, maybe that would work better than what i'm doing.

