Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Getting close...

Starting to doubt i can live drug free.

Im a 28 year old male, was fit and active until around 20. I had always had IBS and problems in my gut. I started to wake up very stiff in the morning, but this all passed by the time i moved around and had breakfast sorted. Then it got a whole lot worse. My hands couldnt close, my chest hurt (Costochondritis), feelt like my ankles and knees would blow out. i was taken for a full set of CTs.

In my neck i have both Retrolisthesis and Anterolisthesis, i have major issues with turning and bending my neck, its pretty much all seized now. my mid back is relatively ok, lots of moderate degenerative spondylosis and osteoarthritis with bony loss. My lower back is a real mess, l2-3, and l3-4 is bulging, with canal stenosis, l4-5 is herniated with major canal stenosis, l5-s1 is herniated with major canal stenosis and a fragment free floating. moderate to severe right s1 nerve impingement. bone degeneration throughout. on top of it all i have both cervical and lumbar osteophytes.

Ive tried methotrexate and Salazopyrin, DMARDS, NSAIDS, which i had a major anaphalaxis and wound up in hospital vomitting blood. I have near constant 7-10 pain in my back, right leg numb. Ive been on major painkillers which i got addicted to and took myself off. been medication free for over 12 months with the exceptions of glucosamine and magnesium.

Lately i havent been coping. I work full time as an electrician, and i travel in a car long periods. ive gained a heap of weight which hasnt helped.

Im getting tired of fighting.

someone tell me it gets better,,, please.

WELCOME, WethereX:



Okay...it really does get better. BOYHOWDY, do I remember my AS in early days and it was terrible. Although these stages do not last, the disease 'seems' to get better and also in many ways gets worse, as the permanent skeletal damage mounts.

But ONLY "If I knew then, what I know now!"

My forced permanent remission came many years too late to avoid this damage, but I saved my eyesight, stopped the kidney stones and myriad "sequelae" that caused so much pain.

The earlier You begin, the quicker this will work and more effective will be the most natural treatment possible. These are covered in Carol Sinclair's "The IBS Low Starch Diet," (available via Amazon in electronic form) with easy to understand mechanism described by Professor Alan Ebringer. Ten years before his work, Dr. Giraud Campbell wrote his unfortunately titled "A Doctor's PROVEN New Home Cure for Arthritis.".

Check out this site, and the technical papers, but especially our NSD Success Stories

Yes, IT GETS BETTER, but especially if YOU make it happen!

HEALTH,
John

I have been dealing with the curse for 38 years, that about when I was diagnosed. Pushing 52 now, and I have had some ups and downs, it gets better, then it gets worse. If you have ever watched a cat chase a laser pointer light, this is what its like chasing A.S. pain.
I cant tell you it gets better, but your situation will change, the bell will ring eventually and you may get some rest until life rings the bell to fight another round.

I've had GI issues since before I started school, but until I was 30, it was mostly just bouts of chronic constipation. When I was 30, I had severe gastritis and bowel inflammation (for a year I did not digest my food properly), but after 3 years that got better. When I was 35, the joint stuff started. I was really bad, got a bit better within about 5 years with PT and a good physiatrist who gave me a cortisone injection to my SI and a number of trigger point injections. I managed on my own until about 2006 (about 3 or 4 years), then things got a lot worse again. Finally in 2010, I found a good chiropractor (no old fashioned adjustments to the spine (instead manual traction and soft tissue work a lot like my old PT did) and then a rheumy to dx me. Then a good rheumy here in town. In 2011, I started taking methylprednisone when I flared, that was the first "getting better" and then in 2013, I started humira, that was the real "getting better". Isn't perfect right now, but so so much better. I never would have predicted how much better it could be on the right medication.

So yes, it can get better. I do a lot of natural things too. Things I had to do before I could find someone to dx me and allow me to try a biologic. But I needed that biologic to really get my life back.

I still can't sit well. I can sit in my old 1995 saturn with 250K+ miles with ice packs for up to about an hour. That allows me to get to and from work. If I fly, it has to be within an hour or so which limits me to the east coast, but at least I can go to a meeting a year if I need to / want to. I have to use pillows and a number of meds to make those trips, but I can do it now. Driving is the biggest challenge, as my car is getting old and haven't found a new one yet, but I hold out hope. I also have to be very mindful of all chairs: I need completely flat, relatively firm chairs. This is all due to my neck.

You've made such an effort to reduce the amount of drugs used (I'm thinking of the addictive kind in your case), how about starting to think about minding what you eat?

It's a complete change in mindset, and it may not happen over night, just like a cleaned up way of eating won't bring pain relief over night, but it is so very worth the effort in my opinion.

To get control back over all these crazy symptoms is a huge relief and motivator. Do some reading on this topic, on this site, and many others, if you feel up for it.

/Kristine