Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Excercise - Whats good ? Whats not?

Hi John

I am fairly new here and in the posts I have read in the past I believe that DragonSlayer truly cares about folks and is trying to help folks rather than pursue his own agenda. That being said please don't take what I am about to say/ask personally. Did you get the numbers you used in your post from some AS study or are you just highlighting what you believe to be the power of the diet? Based on your numbers no matter what you do you would have to follow the diet in order to protect yourself from severe long term damage. That is fine as I do buy in to the diet to some extent. Just looking at things from my new and limited perspective I am having trouble fully agreeing tho. I beleive on this site or some other I read that there were roughly 500k folks in North America with AS. This site has about 4-5k in members with even less posting regularly so that leaves us with a pretty small sample of our population on this site. Based on other comments I have read on the site a lot of the posters have fairly severe disease. That leaves a lot of folks that do not post about how their disease progressed and leaves me wondering how many really have severe long term damage from not following the diet. My understanding is that the higher percentage of folks do not have AS severe enough to create severe long term damage especially once recognized and treated. That of course does not mean that they have no damage just not something so severe as full fusion. I fully understand that there have been multiple studies done that show how the diet affects folks for the better. Is it fair to say that folks who have severe disease may benefit most from the diet and that folks with mild to moderate disease may be able to affect the course of their disease with moderate dietary control? From my perspective 500k is a lot of folks with AS, with even more affected beyond our borders as well. I guess what I am really getting at is, does disease severity play a part in long term damage or are we just assuming that without the diet that all 500k of AS cases would progress to severe damage?

I am not trying to be argumentative but when I hear about the diet and read about the studies it always gives me more questions than answers. They used fairly decent size samples groups I guess but with 500k affected I truly wonder if the samples they used were enought to encompass all the folks that have this in a mild to moderate form. I appreciate any comments anyone has and as I mentioned earlier I am not trying to provoke anyone who follows the diet and has had great success.

Chris

Get in a swimming pool nothing better for AS makes you feel alive

Keep in mind, anything you do that may cause inflamation, will progress the disease and cause permanent damage. When our sacrum becomes inflamed, the cutioning of our joints are warn away and is replaced with bone. This will lead to increased pain and eventual fusing.

Regular exercise has been a big help in keeping me feeling good, both mentally and physically.

I think the most important part of exercise is listening to your body and not overdoing it. My body is very sensitive, injures extremely easy and takes forever to heal. I stop immediately if something hurts while I'm doing it. Often, I'll hurt the next day if I do something my body doesn't like. Sometimes, it takes paying careful attention to figure out what triggered me so I can eliminate it.

Three times a week, I do a strength training program developed for me by my PT, which works on my core and basic muscle strenth, both upper and lower body as well as developing proprioception. I work with weights, therabands, a BOSU and a physioball. I find that I need to increse the number of repetitions and the amount of weight extremely slowly with these exercises or I'll injure myself.

I used to bicycle, rollerblade and ski, but right now those activities are too much for me. Despite doing them in small doses, I've managed to injure myself doing all three of them. For now, I'm grudgingly sticking to brisk walking, though I hold out hope of returning to other activities soon. I walk 2-4 miles almost every day. With gas at $4 a gallon, I'm focusing on walking instead of driving whenever possible.

I also have a stretching routine which I do most days. Additionally, I do Qigong, which I find helps with relaxation and posture and helps to stabilize my mood.

Experiment to find a form of exercise which is right for you. When you remember what you used to be able to do , it might be difficult for you to work with very light weights, but start small and work up slowly. Sometimes an activity can be modified so that you can tolerate it. If you can't use a standard bike, you might find that a recumbent bike is okay, for instance.

Is it possible for you to see a PT to help you with exercise? That might be helpful. My PT also worked with me on posture and biomechanics, helping me to correct faulty ways of moving. This has been immensely beneficial to me.

Don't give up on exercise as it will help you to feel better, reduce your pain and slow the progression of you AS.

Karen

My opinion is that diet, medication and exercise are important, but genetics has a place of importance also. There are genes other than HLA-B27 which are involved in the AS inflammatory process. Some people are destined to have more severe AS than others based on what genes they inherited.

Like you, Chris, I have fairly mild AS. I've rarely been in severe pain. Most days, my pain hovers at the nuisance level, 1-3. Though I credit diet (NSD), exercise (see my other post) and medication (minocycline) for keeping my AS mild, I know it's not all my own doing. There are factors beyond my control which determine how severe AS will be. I'm fortunate in having inherited mild AS-though I don't know what the future holds.

We each need to do the best we can with the hand of cards we have been dealt. Despite their best efforts, some people's AS is going to progress faster than others'. I recommend using every tool you have to fight AS-diet, exercise, meds, meditation, massage, acupuncture, chiropractic manipulation...We all need to experiment to find what helps keep our own AS as mild as possible, but the end result won't be the same for everyone.

Karen

Hi, Chris:


Yes, my point system is my own perspective, of course. And I do say things that I WISH other people could have told me, so that I could have avoided the damage I am now stuck with for life. There is depressing news recently about the tnf-a inhibitors that do not halt the progression of AS--but why should they since they are just hand-me-downs from RA therapies... When I needed the help that is now available at KICKAS, it was not available to me, but I only WISHED I could have met SOMEONE who had overcome AS (they could have become quite well-off from me alone!). Many years later, I finally met the guy who had overcome AS and he was already quite well-off in part because he had overcome AS early enough.

But, based upon the hard scientific data from the Middlesex AS Clinic and also from Giraud Campbell's anecdotal evidence--and many other sources--diet is absolutely key in treating AS, and I regret that our fellow sufferers cannot know this, so your numbers are apalling all the more since there are still people who can benefit and I hope they don't regret that which could have been. I hope they do not regret that their caregivers could not tell them the truth about AS or give them the option of proper disease management instead of just palliative care.

In the US alone, there are well over 1 million people with AS and you are correct, many are sub-clinical and a considerable portion do not progress quite as severe as many people here, but AS is a disease that can sneak up on you over the years and nobody can predict the long term consequences, however, by definition (especially from the dictionaries of some influential rheumatologists) EVERYONE with AS has SIJ fusion; until this hallmark it is properly called "Pre-AS."

When my own AS was at its worst, I becam a vegetarian based upon the fact that I knew food was involved because I had already discovered fasting, therefore food was somehow related and also the fact that a vegan or vegetarian diet was supposed to be of benefit to people with "rheumatic arthritis" and AS was then in this broader category. BIG MISTAKE!

The majority of people with AS are often not sick enough to get well, so they rely upon NSAIDs and WAIT--until they need stuff like surgical intervention because their disease, which was mild and sometimes moderate has seemingly overnight become severe and advanced. Mixing NSAIDs with terrible diet did that to me--out of ignorance of how and when to use NSAIDs and what to avoid in my diet.

Although I do care about our fellow AS sufferers who are not members, it is for them to reach out to this resource to see whether it is for them or not--again, having ALL the options on the table is the most important thing and anyone who can read the technical papers here and understand the simple charts can decide for themselves what the course of their disease CAN be. Certainly, I do know of many cases of AS that seemingly have not been helped by diet, but the greatest majority of us have--and there are some good reasons that some people do not respond as rapidly as others.

I would be happy if a magic pill were found, but I am afraid that the researchers are looking where the light is brightest, so I'm not holding my breath for anything and besides even diet+antibiotics was about 10 years too late for me and that was almost 10 years (probably 30 major flares avoided, as well as myriad miniflares, TMJ, kidney stones, iritis episodes, asthma, costochondritis, plantar fasciitis, etc etc; I don't miss any of that...) ago!

Regards to You,
John

I started swimming when in grip of bad flare, but I resumed taking phenylbutazone at same time. The combination worked very well for me because the bute didn't damage my gut. I still swim but diet has replaced drugs. Walking is good, depending on what one means by walking. I have just returned from what we call fell 'walking' in the English Lake District - including scrambling and clambering up and down our highest peak, Scafell Pike. My already damaged hip hated it and is still grumbling.

There are specific exercises for AS, some you may not be able to do but they are a good idea to start with.

Hot water and AS usually go very well, so on a bad day get in a hot spa soak it up and then start stretching....

Dave

I love running and biking. We also have a weight gym in our house that I use. When I run, I just listen to my body. I know I have to push through some pain, but I also have learned over time when to stop. It's a fine line I had to learn, but once I did, I'm fine. I've run a 1/2 marathon and 15k since I've had this disease, along with shorter distance races.
Just listen to your body.
sarah

I swim daily and it helps me soooo much, especially with the muscle tightness, swimming stretches those muscles that I don't use due to the fusion. Good Luck!