Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group In search of answers.

Hello. My name is Karen and I was just officially diagnosed with AS. This is my first discussion board and I am hoping to figure out how to start fighting this.

I am 27 years old and started having symptoms when I was about 10, becoming severe at 25. Two years I was diagnosed with Fybromyalgia but knew that my pain had to be more than just muscular and soft tissue inflammation. I asked to be tested for the B27 gene about a half year ago after learning that my mother had it. (Her symptoms started at 25 years of age. She has OA, RA, AS, and Fybromyalgia.) After the test came back positive for the gene, my Rheumatologist did not say it was AS. He really said nothing but that I had the gene. However, he did changed my RX from Vioxx to Indocin (NSAID). Just seems like I should have had an MRI or something. Anyhow, the Indocin did not help much just as the Vioxx didn’t. It did tear up my stomach though. I went back to him this week which is when he said I have a full blown case of AS in my back and this also explains the swollen joints and pain in my hands and feet. He has first put me on a tapering dose of Prednizone. He also gave me a RX for Sulfasalazine but asked me not to start on it until I get some birth control. He also said that he would rather have me on Enbrel but thinks the insurance company will turn down the claim unless we try this first.

Although everything has worsened over the last couple of years, the strangest thing is what has occurred in between my shoulder blade region. My back started popping there randomly. I could reach for a pen and it would pop. It wasn’t a normal pop either. It felt like a bunch of tiny bubbles. This lasted about 6 months. It no longer pops but it is sore, stiff and painful all the time. Many times, I can’t even lean back in a chair because it is too inflamed.

Well, I think the above sums up the sequence of events. Bottom line is that I am so much pain that I am having a hard time working up enough energy to even come up with a game plan. I am so tired of this disruption in my life and want to consult those of you that have some experience with the battle. Bellow are some of the main questions that have come to mind. I am open to all suggestions.

• Should I have an MRI?
• Has the RX Sulfasalazine caused anyone trouble?
• Are my back spasms from the Fybromyalgia or the AS?
• I have purchased a good multi-vitamin, Zyflamend, Fish Oil pills, and a combo pill contain Glucosamine and Chondroitin. Any comments on these? Anything else I should consider taking?
• Should I be on a low starch diet? Any other diet plan of use?
• Should I consider physical therapy?
• I can’t sleep due to the pain. I have tried zanaflex and one other (can’t remember the name). I am still not sleeping very well at all. Is there really such thing as a magic air or foam bed?
• Is there any form of exercise that is better than others? How about Pilates?
• Will the pain throttle back at some point?
• Are there any books or local groups (Houston) I should know about?

I am sure that it is clear to see that I am at a loss and crave answers that will help me be myself once again…. Or at least feel a little more like I use to feel.

Thanks in advance for the help!

Hi Karen and welcome to KickAS! Don't have answers to all of your questions, but some of the other people probably will.

• Has the RX Sulfasalazine caused anyone trouble?
It caused me horrible headaches, but other than that, I tolerated it well. Didn't help me any, though.

• Are my back spasms from the Fybromyalgia or the AS?
Don't know whether fibro can cause back spasms, but AS sure can! I even wrote a post on it yesterday, because it was driving me crazy.

• Should I be on a low starch diet? Any other diet plan of use?
Low-starch diet and no-starch diet are used by some people here.

• Should I consider physical therapy?

Yes! Very important to remain as flexible as possible.

• Is there any form of exercise that is better than others? How about Pilates?
Pilates is great! Swimming and water exercise is also wonderful for AS.

• Will the pain throttle back at some point?
If left untreated, chances are it won't. Good news is, there are several effective treatments available. Many people here are doing very well, either on Enbrel, Remicade, Humira, Sulfasalazine, Methotrexate, Arava and/or on a low-starch or no-starch diet.

Hope you'll find something that works for you,

Nina

Thanks, Nina! As you can probably tell, my mind is racing about all this. I am having a hard time figuring out how I am going to keep working if the pain doesn’t get better soon.

Hopefully the Sulfasalazine doesn’t cause headaches for me as it did you. The Prednizone caused awful migraines but I got through it. I will look into a low starch diet and physical therapy. How many hours a week does physical therapy take?


Karen

karen:

i understand about the racing mind and the need for answers. each person is different. it is important to find the answer that works best for you. it would be wonderful if there was one answer and we could all just do it and get better.

i'm on sulfasalazine and it doesn't seem to be working. enbrel did not work for me. i have "reactive arthritis."

the thing that has helped me the most is "neurontin." it does not take away all of the pain, but it helps. we're using that while we continue to search for answers. and, it helps me sleep!!!!!! i have not had uninterupted sleep for years.

also, my understanding of the low-starch/no-starch diet is that if you want quicker results you'll try the no-starch diet. there is a lot of information on this website. this diet does not work for everyone, but i recommend trying it and be rigorous about it. there is also a recommendation for a 3 day apple fast.

i have migratory AS; it affects different areas and can change from minute-to-minute, hour-to-hour. it hurts worst when it's in my back and/or chest wall.

good luck in your search.

mrs coleman

Karen, welcome to KA!!!

You sure do have alot of questions and you have come to the right place to get some answers. Truthfully, we all become overwhelmed with questions when we're diagnosed.

Indocin really is a treat isn't it. Not. Laid me flat on my back, unable to move, unable to eat, and with noxious diahrrea after only two pills. Needless to say, I didn't stay on it. I'm on vioxx now, which seems to be working. But man, I would love to get onto one of the biologics that are out now. Just have to wade through the insurance company hash to get one of them approved. Which means taking NSAIDS and Cox 2s for a while and wrecking my stomach first.

Should I have an MRI?

Yes, or a bone scan, which will show exactly where any inflammation exists in your body.

• Are my back spasms from the Fybromyalgia or the AS?

It is entirely possible that the spasms are from your AS. The summer before my diagnosis, I was wakened sometimes four or five times a night by massive muscle spasms originating in my left torso (under the oblique muscle). It was quite awful.

• I have purchased a good multi-vitamin, Zyflamend, Fish Oil pills, and a combo pill contain Glucosamine and Chondroitin. Any comments on these? Anything else I should consider taking?

A good calcium/magnesium supplement is necessary. Also, I would look at MSM, which is a tissue rebuilder.

• Should I be on a low starch diet? Any other diet plan of use?

Many of us have found that restricting or eliminating starches from our diets is helpful. For myself, I no longer eat wheat or cow dairy, as I have found that these put me into flare (especially when consumed together ). Check out the NSD forum for good information. And remember that, while it's definitely worth a try, it doesn't work for everyone. It all depends on the individual. You may notice that you need less meds. or that you don't need them at all after a while. Or, you may notice no difference at all.

• Should I consider physical therapy?

Yes, or a really good exercise/stretching programme.

• I can’t sleep due to the pain. I have tried zanaflex and one other (can’t remember the name). I am still not sleeping very well at all. Is there really such thing as a magic air or foam bed?

I have an amazing mattress that has made sleeping much easier (although, I'm a restless sleeper period and there isn't much I can do about that right now). My matress is a no name tempurpedic type matress. It's like sleeping on a cloud and I don't know how I ever survived without it. Some have had luck with air mattresses as well. It's worth looking into.

When it comes to drugs before bed, I smoke a little pot. Just enough to relax my muscles.

• Is there any form of exercise that is better than others? How about Pilates?

I swear by pilates, actually. It focusses on strengthening the core abdominal muscles so that they can do their job properly, which is to support our backs. I do matt work only and it has been extremely beneficial for me.

You migh also look at specialized swimming programmes for people with arthritis. Heated pool is best. Swimming is one of the best things we can do.

Walk. Walk. Walk. This is so important on so many different levels.

I also take a Flamenco dance class. Again, it's focus on free moving hips and strong upper back is so good. I can go into a class feeling like death warmed over and come out feeling strong and relaxed.

• Will the pain throttle back at some point?

Yes. Maybe not completely, or maybe completely. But you won't always be in the pain you are in now. It's a matter of learning about your disease, how it affects you and finding the right combination of exercise, diet and drugs for you. It will take time and patience, but I promise, you won't always feel this badly.

• Are there any books or groups I should know about?

You've already found the best group there is!!!!

Hugs,


Kat

Hi Karen,

Most of your questions, if not all, have been answered. But I did want to comment on just a couple of things. You said you had taken Zaniflex to help you sleep. I tried it too, when I was really having sleeping problems. It really messed up my head in less than a week. So I stopped. The one drug that has helped me sleep is Soma, but it can be habit forming, so I only take it as a last resort. Also, though I think someone said that the pain won't ease up, that is not necessarily true. Everyone is different in the way their AS goes. For me, the first 2-3 years were HORRIBLE, then it did ease up. The easing up was one of the many reasons it took me 8 years to get a diagnosis. In my case, my AS tends to bring pain in waves, and now it moves around much more than in the early years.

Anyway, welcome to KickAS!!! As someone else said this place is better than any book or other source of info. out there. Because we all live with the beast.

Johnny

Hi Karen, and Welcome to KA!

You picked a GREAT discussion board for your 1st. It was my 1st one too, and now I call it home.

The list of nsaids is quite extensive and switching around at the beginning is often needed to figure out what seems to work, as we all react differently. Whether or not nsaids improve the pain is also used as a diagnostic clue (I believe). Vioxx likely would have protected your stomach better but if it wasn't working then there was no point.

I was initially helped by Voltaren, but didn't see a significant improvement until adding (enteric-coated) Sulfasalazine. Of course you will hear both positive and negative stories for most meds, but in my case it gave me significant pain reduction. It is considered a disease modifier by many, and since I have no significant fusion after 22 yrs perhaps this is true! If you continue to have stomach issues then a low starch approach might be extremely helpful for you.

There is an exercise section on this site which shows some safe gentle stretching exercises that are beneficial for AS.

I do get back spasms from AS, but I can't comment on FM.

As someone interested in supplements, I would only caution you to avoid Echinacea. Anything designed to boost our messed up immune systems is generally not a good plan.

The pain does change around somewhat. Mine went from practically intolerable one decade to fairly tolerable the next decade, and so finding out what works best for you is really key.

Another big shift for me was buying a new mattress. There are some really good options out there and since good sleep is worth anything, try to ignore the daunting price tags and go for the gold.

You will no longer be at a loss for reading material! This site has a wealth of knowledge and the nicest group of people! Hope you enjoy it here. Take care,

mig

Karen,

I can’t speak on other ailments but have had AS for twenty years and became a severe case (major joints replaced). I can share some of the things that helped my AS with you.

I have taken every drug under the sun for my AS except Remicade or Enbrel and was usually on a half dozen at once. Medication only masks the symptoms and didn’t cure the problem. Of all the things that I have tried for relief of my AS changes in my diet has helped the best. That’s where I would look for answers first. My own experience with my diet over the last three years has taught me sugar is one of the main foods that causes my AS to accelerate. I also cut milk and eggs from my diet and have talked to several others who have done the same. The no-starch diet only worked for me 50% of the time and I discover that it was starchy foods loaded with sugar that affected me the most, cookies, cakes and pies, plus all the added sugar I was pouring into my coffee or tea. I always drank Mountain Dew filled with enough corn syrup to keep a whole town in Iowa employed. (It takes a lot of corn to make enough corn syrup for one six pack of soda).

If you wanted the perfect body and were looking for someone to teach you how to achieve it who should you turn to? Bodybuilders and look in any body building magazine and what are they eating? Fruit, vegetables, and chicken and fish, hold the rice (some body builders carb up on rice) and whalla you have a no starch diet. World-renowned exercise guru Jack LaLanne was one of the first advocates of eliminating sugar from peoples diet. He eliminated sugar from his diet when he was something like 15 and at 80 he could swim a mile pulling a rowboat full of people. In my neck of the woods the State health department ran a series of commercial on the fact that people today consume three times more sugar in there life than there grandparents did a mere 50 years ago and they suggested parents shouldn’t let there kids drink soda because the problem was getting worse. Kidshealth.org has seen a rise in children with IBS because of to much consumption of milk and soda.
Microbiologist Garry Null (Often seen on PBS) believes that all pre-mature or reactive arthritis are caused by food allergies. The United Sates is the biggest consumers of milk, pop, junk food and sugar than any other industrials nation and has the most RA, AS, Colitis, Lupus and Chrons.

I have to admit a lot of the problem is my fault. When I was diagnosed at 19 I didn’t realize the severity of the situation. I smoked; I drank to much coffee, pop, beer and Jack Daniels. I push my body to hard at work and stressed about the little things. What can you tell a 19 year old? (Sex, Drugs and Rock and Roll). Today at 40 I’m paying for it. If I knew then what I know now, diet and exercise, diet and exercise.

Luckily with two new hips and a better understanding of my diet I’ve stop any further permanent damage and have even started to improve. I eat a lot of Cream of Wheat to load up on iron, a vitamin pack, and plenty of strawberries. If I eat a qt. of strawberries I feel better, I think that because they have more vitamin C than oranges. I have trouble keeping on weight so I eat big Mac’s (hold the greasy fries and super sized pop)
I still get stiff from the permanent damage and take a couple hundred mgs of Ibuprofen twice a day when I need it. An anti-inflammatory works best for me. It wasn’t to many years ago you couldn’t even get Ibuprofen. I don’t want to try anything like Enbrel. I want to wait and see if the Enbrel users give birth to any kids that glow in the dark. Walking is my best exercise; I get a cart at a big supermarket and walk around, bending and stretching, twisting and turning.
I also have an exercise video called Body by Jake “The better back workout” great video for anyone with AS. If someone with mild to moderate AS does a thirty minutes exercise video for people with bad backs first thing in the morning they can have a 100% better day. Easy yoga is pretty good to. “Move it or fuse it”

Well Karen, I don’t know if this helped you any but it made me feel good to think I may have helped someone

Take care

M

Karen,

Welcome to KickAS. Your in the right place to get all your questions answered and the best support anywhere.

As Johnny said you've got good answers to most of your questions already. I just wanted to mention that Enbrel was very easy for me to get through my insurance company. My rheumy had told me how well it works for most his patients, but advised the insurance company probably would want me to try other meds first. I asked him to write me a script and I'd check it out anyway. All they could do was say no. At the time I was taking Indomethacin and Sulfasalazine. Entric-coated Sulfasalazine is very important. It's much easier on the stomach. Anyway, I was hurting real bad at the time and didn't want to take no for an answer. I took the script directly to my insurance company's pharmacy and left with the Enbrel. No questions asked. I called my rheumy and he was surprised, but told me to come back and I was taught how to inject myself. I know many people have a hard time getting the exspensive meds, but for me it was a breeze. I guess you just don't know until you try. I've suffered with AS for about 30 years and thought I was destined to live my life in misery. Enbrel has given me my life back. I'm still in some pain and have flare-ups once in awhile, but the every day pain is tollerable. I've only been on it a short while, but everyday is a little better.

I would highly recommend swimming. It's the only exercise I can handle at this point. I've regained a lot of motion that I've lost and it's easy on the ole body. I swim and hot tub at least three times a week. It helps so much. Exercise is so important no matter what degree you can handle. Move It Or Fuse It, you'll hear that a lot around here.

Good luck with your research and welcome to the family...

Fred

"Even if your on the right track, you'll get run over if you just sit there." Will Rogers

Martin,

Great glow in the dark line.

Fred

"Even if your on the right track, you'll get run over if you just sit there." Will Rogers