Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group First time post and Intro

Hello to all!

Newbie here so I’ll start with my story: My name is David, 34 yrs old, married for a wonderful 10yrs to Kari, 3.5 fantastic children: Olivia(6 going on 16), Ezra(5 and Dad’s little shadow), Ava(8 months and growing fast), and one yet to arrive(due in late January). I’m self employed. I own and operate a high precision machine shop, manufacturing everything from medical components to aerospace parts. I work long hours and truly love what I do. My hardworking wife is a stay at home mom and home schooling teacher to our children. We are evangelical Christians and trust the Lord to lead, direct, and correct every aspect of our lives.

I’m not entirely sure of my first flare up. My teenage years were filled with various sports, work, and physical activates. I was always active with long distance running, downhill skiing, wrestling, hiking, and biking. My late teens to early twenties were filled with extreme skiing and motocross racing. I grew up with tons of bumps, bruises, sprains, cuts, and falls. I shook them off and kept on going. I was, of course, indestructible.

I can remember getting aching pains in my hips and groin in my mid teens. They would come and go randomly and light to mild severity. I would ache in various areas of my back, shoulders, knees, neck, due to crashes, falls, hard physical labor etc. I lived hard and played hard all the time.

My mid twenties was the start of pains that I had never known before. I would say sometime in 2002 was my first extreme flare up. My left groin ached so bad that I could barely walk. That slowly progressed into hip and sacrum pain that was so extreme at one point and time made me close to passing out. Ever since then, I have had some sort of pain in my hips, low back, or sacrum joints. Doctors went from saying I had sciatica to bulging discs. I tried many different physical therapists, doctors, chiropractors. In the last 9 years, none seemed to help.

The pain I have is never predictable. It comes on quickly and leaves in the same way. The pain can be in the right hip one time and the left the next, left groin, right groin, sacrum. It is always random. I have spells of tight lower back aches when I sleep. Whenever that occurs, I never get a full nights rest. Fatigue is always present and at most I would have a week or two pain free once every few months. The pain free times are always random too. The last nine years to the present have been a rollercoaster pain and agony.

About two years ago I started seeing a new chiropractor that was different from the others. She took the time to get to know me and my body. For a year she tried to no avail to solve my aches and pains. But what she did do was she helped reduce some pain and she had the knowledge and humility to find out what was the true cause of this incurable pain. She had some in office x-rays taken of my sacroiliac joints that showed deterioration. She then had me have more x-rays taken at diagnostic imaging clinic for some better localized images of the problem joints. With that done I went to my regular doctor who had blood work done. The results stated I had the HLA-B27 marker and the x ray images showed joint deterioration. When he said his best guess was AS, I had no clue what he was talking about. He referred me to a rheumatologist for further insight. October of 2010, the rheumatologist confirmed the AS diagnosis, gave a quick explanation of the disease, threw me a prescription for indomethacin, and basically said “have a nice life, see you in a year for a follow up”. Wow! The Dr. just got done explaining a horrible life-long debilitating disease and gave me no way to deal with it other than drugs. She said there are other drugs out there, most may not work, and others are very expensive and also may not work.

So now to the present, July of 2011, at times I’m almost at wits end and my faith in the Lord and the support of my wife are the only things keeping me sane. I have constant pain, sometimes minor and others great. One day my hip will hurt, the next will be my groin, the next will be my lower back and lumbar. All the indomethacin does is gives me an upset stomach and I quit taking it. I exercise when I can and try to eat right. I need to get a good stretching routine down and other means of exercising.

I need help! What path do I need to take to tame this beast that is taking so much away from my life? I’ve been reading about the NSD. I know I can do it. Eat foods that taste great but cause terrible pain or eat what my body needs to keep the pain away. It’s a no brainer to me. Would it be a wise avenue? What of other drug treatments? What has worked for the rest of you? What kind of physical therapy do I need? Where do I look for a Dr. in my area that will have at least tiny bit of insight to AS? I’m strong, passionate, and determined to beat AS into submission. I want to start right now!! I just need a good game plan because currently, I’m flying blind. Any and all help and encouragement is greatly appreciated.

May the Lord bless you and keep you!
With optimism,
David
In his hand is the life of every creature and the breath of all mankind. Job 12:10

Hi David. Welcome to Kickas. Sorry to hear you became an AS member. Forums like this are great! There are days I think nobody else knows what I feel like or am going through, then I log on here and find comfort. A great support system is a must! I think it's great you found a chiropractor that went above the call of duty to help you find relief. My experience with a chiropractor wasn't pleasant. I think it is time for a new Rheumatologist asap! It's nice meeting you and wish you the best fighting this disease. Jason.

Welcome, David.

What a horrible rheumy. Time to find another, if you have choices in the matter.

Some people do well on NSAIDS, others don't. I didn't, after trying several. Most upset my stomach, none of them worked. Except Mobic. worked for about 2 months, then quit. Never tried indomethacin.

Lots of people use the NSD successfully. You'll learn a lot from that forum.

I've had PT for a couple of injuries, conditions and one PT person had heard of AS. It's probably a crap-shoot to get one. Insurance plans make the referrals. If it's a group of therapists, maybe after your initial visit, they would be able to tell if you would be better served by someone else in their clinic that may have AS experience.

There is a lot of information here at KA, and a lot of helpful, knowledgable people to learn from. I'm still learning after 2 yrs of fighting this spondy monster. Again, welcome to KA.

Hi David, welcome to KA!

It is a rotten diagnosis, I know. At least now you know exactly what you are fighting and what you are up against! It sounds like you had a clever chiropractor, a smart GP, plus a rheumatologist that was able to give you a diagnosis. Unfortunately, a 10 year delay in being diagnosed is not uncommon still.

Err, that doesn't sound like particularly helpful advice to someone newly diagnosed. While it is true that there are not many effective medications, usually through trial and error you will find something, or some combination, that should at least help make your life and pain more manageable. Indomethacin is one of the older (and possibly harsher) in the class of nsaids (non-steroidal anti-inflammatory drugs) and this class of meds does have a tendency to cause stomach upset, but you may find switching to another nsaid with a stomach-protector medication might work.

The biologic class of meds are definitely expensive so unless you have good insurance coverage, these may be more difficult to access but not necessarily impossible. Rheumatologists will usually try an nsaid first but a year for a follow-up is ridiculous, so call them back, let them know that you were not tolerating it well and go from there. Perhaps ask your GP for a referral to a different rheumy (maybe ask if s/he can find someone with a special interest in AS) if you didn't sense this one was a good 'fit'. A good rheumatologist that you feel comfortable with and trust can make a huge difference!

Diet may help, physical therapy may help... strong passionate and being determined to beat AS into submission is a great starting point!

Hope you will find loads of ideas and support here, David!
mig

He forgot to mention that most of the time he never even lets on to how much pain he is in and through it all he’s an amazing husband and father! We love you!

Hi knotch - welcome to you too!

It is nice when spouses join the site there is a lot to read and learn when you are newly diagnosed with a chronic condition, even if you have been living with the pain for years.

There are a lot of us who tend not to let on when we're in pain (except maybe in here on KA!). I don't like to think that AS should be allowed to spoil someone else's day too, and you can only complain so much before you're tired of hearing yourself.

Good that you two have each other to lean on.
I hope you will both enjoy the community!
mig

Thanks for the words of encouragement.

I ask for your prayers right now. I have a pretty heavy flare up going in my left SI joint. If I sit nice and still it is almost undetectible. The pain doesn't get me down as much as the time I miss out on with my kids. I love rough housing and goofing off with them. Tommorow will be another day and I always live with hope that it will be pain free.

Hi Oknean and Knotch,
Welcome to the site. So sorry that you have to be hear though. Getting knowledge about this terrible disease is your best way of getting good care. It takes a lot of research to really get a good knowledge base but the more you know the better chance you have of finding what is acceptable from your Dr.'s. You really need a new Rheumy. That Dr. was not helpful at all.
It sounds like you like to be active and as far as sports are concerned, water therapy I think is the best way to go. We with AS have to be very careful with fractures and hydro therapy is a great workout! When I was first diagnosed I was told to start hydro therapy. I was thirty at the time and so I went. I was the youngest in the pool but it helped considerably. It helped me feel that I had some control of my body. After I went into a lengthy remission I stopped but now I am back in the pool and loving it all over again.
I have a team of Dr.s that I had to find all on my own. I have an eye dr., two pain specialist, a rheumy and a podiatrist. There are injections that really help and there are TNF blockers available to help. There is so much more offered now then there used to be. I get shots in my SI joints and it is the only way I can walk now. That is wonderful that you have each other. I have my husband and the Lord as well to get me through my days.

I was diagnosed in my late 30s with AS. I probably had it all my life as I had an eye problem in fifth grade the physician could not figure out. He said it was chalk in my eye. I had walking problems in school. I had acne and use of antibiotics kept me going, off label but it works. Since I did not see a rheumatologist before age 22 I can not get SSDI that way. I had eye problems later that got diagnosed by the second eye doctor I saw. I almost lost my vision. I have used enteric aspirin but it is not recommended. I am on Enbrel now and I hope NSD will get me off of that. NSD is also recommended for type 2 diabetes so it helps more than AS.

Luckly I haven't had any eye problems yet. 99% of my pain and discomfort has been SI joints, hips(mainly the left), and groin. But in the last 3 weeks I have had nagging pain in my low lumbar that I just can't seem to kick. Today it is pretty bad. If I remain perfectly upright with my lumbar forward, I feel little to no pain. And if I hunch over it is fine too. It's just the movement from straight to bent over that is murder. I can't bend over to pick something up without some big time pulling pain in my lumbar area. Everything is so tight right now. Something is just stuck right now and I wish I could get some relief. I usually live day to day with a "4" on the pain/discomfort scale, but the last few weeks have been at least an 8+. I just have to keep plugging forward.