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General Message Board for Ankylosing Spondylitis and Related Diseases
11/17/18 06:44 PM
I have been where you are too many times during my "retail' years. There are steps you can take but they would never enable me to wear high heels or stand around for long hours. That ability was gone in my 20's with plantar fasciitis. The first step is anti-inflammatories, for me that would be celebrex. Then arthritis tylenol then tramadol at maybe half dose if I don't want to be too loopy. Muscle relaxers would be a problem for me if I want to be alert but I would sometimes try a very low dose of diazepam for spasms. What I learned to do next is to get in a tub of very hot water and put my hands under my hips on either side of my si joint or a little higher where I have a torn disc and stretch after my body had heated up. I would cup my hips and let my spine "hang" in the hot water to curve it back out.
As for chiropractors, I have been to four over the decades and only one would I trust with my spine at this point in my life and he was able to get me back on my feet by massage and stretching. He emphasized getting the blood flowing to the area. Absolutely no cracking or manipulation.
My goal was to be able to bathe and feed myself during these times, not go to parties as I was usually using a walker to get around my home.
Some docs will give you a medrol dose pack or a burst of prednisone for this. Some folks are helped by this but I wasn't because it would raise my bloodsugar which made me worse.
These episodes taught me my limitations but I still sometimes am hard headed and lift too much, stand too much or sit on bad surfaces. These episodes can also be a indicator that your inflammation is not under control and and needs attention. Sorry for the ramble. Good luck! Danielle
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/17/18 04:54 PM
My bowel situation has been similar to yours, although no bowel obstructions. I'm using humira for the A.S. Regarding bowels I've had lot's of symptoms but no positive test results for inflammation, biopsies and various 'scopes. Had my gall bladder removed for sludge and no stones, too. Family history of IBD, psoriasis and arthritis. My GI doctor finally talked me into trying Nortriptyline to control what is diagnosed as IBS. It has actually helped quite a bit, although I have to keep to a fairly low-starch strict diet, no processed foods and eating out is a crap shoot. And I have to say your brillo pad analogy is spot on. That's exactly how mine feels when it's acting up.
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/17/18 01:35 AM
Not neccesarily. AARP offers a lot of plans AND will answer every little tiny question you ask. They deal with 90 years olds, so they are not scared of the medications and diseases. Their website is clear and concise. $15 membership a year and you get a lot of information, before you need it. At least start with them, you will be up to date on all the info. I also suggest switching to the IV ahead of time so there is no insurance fighting, just seamless succession of insurance policies.

I urge people to realize you will have to give up (unless something changes, like Humira going generic) injection anti TNFs and get an IV. Do not fill out any info "in case" you "might" be eligible. Those drug companies just want your information and will not let you have them.

My only other advise is DO NOT LISTEN to anyone NOT on Medicare because there is a lot of misinformation and you won't be able to change for a year. That misinformation can cost you thousands and thousands of dollars.
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/16/18 11:15 PM
Does Reactive Arthritis (ReA) and Polymyalgia Rheumatica (PMR) count? In my opinion it doesn't really matter where the inflammation is ... it all hurts. For whatever reason, muscle inflammation seems more likely to be treated with prednisone---I don't know why.
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Alternative Treatment / Diet Discussion
11/16/18 05:04 PM
I am a newly diagnosed AS patient but been dealing with it for almost 10 years. Opioids work wonders for me but since the witch hunt has begun on them I was forced to try antidepressants which all of them made me crazy or moody and 100% disfunctional in the bedroom. I stated then I wanted only my opioids and that wasn’t going to happen with the FDA threatening doctors. I lost a PM Dr. and a Psychiatrist in a year due to the FDA taking their license. I had a spinal stimulator trial and it didn’t do much of anything if at all. I am now on Medical MArijuana while weening off opioids or at least trying to. I am as only given a month to do this after years of daily use. After 3 weeks I say that MM has done 0 to 15% for my pain. I still rely heavily on my Percocet. I have tried 12 different mix’s and none makes me feel better unless I get high and at that point I become useless. On Percocet I function 100% normal. I will admit I can be a glass half empty guy more often than not. So I wonder if my negative energy affects MM success. The original poster was very upbeat and alive soul wise. My I’m spiritual but not religious, mostly see the negative, at one point was the life decision of the party and always on the go. I feel Marijuana does exactly what some say and that is only enhance what and who you all ready are. Until you can successfully change your thinking MM will not work great. Just my opinion
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