Again, assuming I have AS and this isn't something else, I am wondering what types of exercises are deemed "safe" while you're fusing--if any? Right now I have been told by the rheumatologist and my PT NOT to do ANY type of exercise AT ALL. I am allowed to hang in the pool w/a noodle but not move my legs around or add any type of motion.
I see my ever-enlarging belly from being so sedentary and hate it. I tried rowing on a rowing machine but that made things worse. Summer is coming so I will no longer be able to "hide" in sweatshirts and sweaters and would really prefer not to have people ask me, "When is the baby due?" Plus I hate how I feel when I look down and see a big belly. It doesn't help that I am frequently bloated either as it makes it look worse. So is there anything I can do, even something small, to help tone up down there? My diet is good, for the most part. I don't eat a ton of junk and when I do indulge in something like chocolate it's a small amount. Even that doesn't seem to help when you are destined to refrain from exercising, though.
Any ideas? Or do I have to wait until they can get me into remission/out of this flare?
If your doctor and PT are telling you not to do any exercises, there must be a possibility of serious damage if you do. Are you allowed to walk? Even walking at a slow or normal pace could be helpful if you are allowed to walk a lot. I am sorry you are going through this!!
Hi Laura,
As far as I've heard, exercising will somewhat prevent fusing and keep your range of motion. I've told my rheumy that I attend warm water therapy once a week for stretches and swim about 3 times a week to try to keep my strength and prevent more weight from being put on...and he said that this is good. I find it strange that your PT said that you could not exercise at all....I would have thought that they would encourage exercise in the water as there is little stress on your joints as you are buoyant. Anyways, that's just my opinion...I'm a little skeptical of doctors at this point now with all the poop that they have tried to shovel me!
Keep researching...knowledge is power!
Take good care,
Trina
I am not a doctor, and I don't play one on TV, but exercise has helped me. Last week I ran 12.5 miles. I have been running for 19 years. I think I was diagnosed with AS 23 years ago. I was diagnosed with MS 2 years ago. I am still running (I havn't got there yet). Your situation may be different so I would say listen to your doctor, but I would get a second opinion.
Hi Laura,
Well so far I have no fusing so since I have put on alot of weight due to steroid use I have decided enough is enough.
My daughter and I together have been making changes for awhile like drinking more water, watching sugar, we now dont eat anything after 7 and this last week we started walking. I walk with a limp and when we first started I could only do like 15 minutes and then I was done, tonight we walked for 45 minutes, I was really proud of myself.
There are 2 days I know we wont be able to walk so even if I can walk 3 or 4 days a week it will be better than none, but I understand if your Dr. does not want you walking. I would try and swim my Dr. told me that is the best the water taking your weight away.
Keep us updated,
Lisa
Laura
I also think you need a second opinion or at the very least ask them why you cannot exercise. Just saying no exercise puts fear into your head. AS patients are usually told to use it or lose it - you fuse when you do not move and exercise. It is important to respect your medical professionals advice -but not blindly and with only faith. I hesitate to suggest it could be incorrect but some Dr's and Rheumys can also be out of date. You need more information and to know what and why.
all the best
Kylie
I think they are concerned because I have been in a lot of pain, so they are afraid to aggravate my condition even more? I'd ask the rheumy but I don't see him until May. I do know my PT doesn't want me to do the core strengthening exercises (aside from keep the core pulled in) until I am out of pain. He is the one who told me I could come and hang out in the pool anytime I wanted.
Just in the past couple of days the pain has really picked up and is starting to wake me up at night. I guess I'll call the rheumy's office tomorrow and inform them of the change and ask about the exercising. At this point even walking around doesn't help me--and that used to a bit.
Hi Laura, Sorry to hear you're feeling so crummy.
I think any rheumatologist who read your post would gasp - most know that exercise is key in the prevention of fusing, providing you are physically able, of course. Obviously if you're in an acute/active inflammatory phase, and in terrible pain, you're not going to be able to exercise (and for me, I know that will just make it worse). But when things are sort of kinda in control, and pain meds are working, light exercise/stretching is usually encouraged.
I think the bottom line is - if you find something that works for you, that helps your pain, increases flexibility/motion, and gets you moving, any doc would be silly not to encourage that. This illness is so individual - just do a little experimenting and do whatever works best for you. Hang in there.
I agree with Megan, exercise should be encouraged and this is the first I heard of a rheumy discouraging.
When in a flare and exercise heightened the inflamation and made walking etc difficult I discontinued my exercise, but if I was doing well all the rheumies I had seen encouraged exercise.
Some of the best exercises... stretching, swimming, walking.
Best to you,
Tim
Hey Laura...I see that no one has mentioned the NSD [unless I missed a post]. One of the benefits of the NSD is that the diet can stop the inflammation when the inflammation stops then the pain subsides. Have you tried the NSD?
Just wanted to put that out there.....also as another benefit after being on NSD [almost 7 months now] I lost 25 lbs in the first 3 months. I am now at my healthiest weight since junior high school! Oh yeah, and the diet is free......
Cheers,
Rita
James, 12, Adrian, 10, Elisabeth, 3, my babies!
I had to go back and refresh my memory and read your other posts. You don't have a diagnosis yet. You are not fused (?) from what I am reading.
However, let me say from experience that if you actually had some sort of very serious physical condition precluding you from exercising you would be specifically told what the actual physical diagnosis is more quickly.
If your current doctor does not subsequently put you on some sort of exercise program when you see them next, my advice to you would be to fire his sorry a$$ and tell him why you are doing so, because with this disease, if you become immobile, you WILL fuse and you WILL become incapacitated.
THIS ISN'T RHEUMATOID ARTHRITIS AND YOU DON'T TREAT IT THE SAME WAY
If you have a blown disc or fracture or some other sort of problem going on, they are obligated to tell you. Find a primary care physician who gives a bleep and don't rely on the rheumatologist, the ONLY purpose of having a rheumatologist in the United States is to get insurance company approval for getting treated with certain drugs.
Laura, doing nothing is the worst thing you can do. While vigorous sports and land aerobics is out, water exercise, water walking, swimming, and deep water exercise is all great for you. And remember the all important daily stretching.
I hope you are feeling better
Cindy
Correct--I do not have a diagnosis as of yet. When I saw the rheumy he mentioned that he didn't think it was AS as it looked like only the left SI joint was being destroyed. I wasn't really impressed w/him but everyone I keep seeing tells me how good he is at finding out what is wrong w/people. My optometrist told me I should just go down there and sit in his office and demand to be seen before May.
I have thought about doing just that after my MRI and xray given how they refuse to really answer anything or get me in before May.
Again, I am guessing that because I have been in pain they are assuming I am inflamed and do not want me to inflame the joint(s) anymore by exercising. I do try to move around as much as I can but I don't do any major things like the core strengthening exercises, etc. as those seem to make me hurt even more.
My GP is great, yet she doesn't feel comfortable w/all of this "weird" stuff I have going on. She will order any tests, refer me, or do what she can to help me get to the bottom of it but I guarantee she would not try to decipher it all on her own.
(I forgot to quote Squeaky, but this was in response to trying the NSD diet)
I haven't honestly. Mainly because for one I don't eat many starches to begin with, but also because until I know for sure what my diagnosis is I don't want to deprive myself of what little starch I do enjoy. Plus, I have to take medicine everyday that I am positive has starch in it and I can't stop taking it, nor does it come in any other form.
I agree with the others. Even the smallest amount of exercise you can tolerate is better than nothing. There have been days I didn't think I would be able to even get down my stairs to go to work, let alone exercise, but as long as I don't overdo it, it always reduces the pain.
No exercise will only make you stiffer. I've been in PT for 3 years & when my joints can't do anything on "land", my therapist tells me to get in the pool. My rheum. told me that exercise is not "optional", it is a requirement. I just need to realize my limitations.
I would think that if one of your SIs is being destroyed, that alone should be pointing your doctors to a dx of undiff. spond. at the very least, so you can at least get on some treatment & see what happens from there.
Hi Laura,
I would suggest that you specifically ask your doctor and therapist WHY you should not do any exercises at all, as usually it is very important that you DO find some exercises you can do and do them regularly to help fight the loss of mobility and decreased range of motion that AS always causes. There must be a specific reason they do not want you to do any exercises at this time, and you should definitely find out what those reasons are. Many people here--myself included--find that doing those water exercises you mention helps make us feel better and ensures that we achieve maximum mobility, whidh is essential when it comes to fighting AS.
Brad
Louise, I'm another one that is shocked that a rheumy and PT told you not to exercise. If nothing else, they should tell you why as there may be something going on that might be exacerbated by it. If it is that you are in pain, then you should know that exercise can relieve pain if you play it smart. While you are hanging off that noodle in the pool, kick your legs a bit.
Exercise keeps our joints lubricated, keeps our muscles from stiffening, helps keep our weight down, helps us sleep better thus relieve our fatigue, and also helps relieve the depression that often goes hand in hand with chronic pain.
But don't push it. Just do one minute at a time if that's all you can handle right now, and build up to 15 minutes at a time. Start where you are now, not where you wish you were. If you're in a ton of pain, take is slowly and make it small. A little is enough. But move those bones!!
And find out from the PT what the concern is about you exercising. As I said, there may be something going on that we know nothing about.
Hugs,
I have been using magensium citrate to relieve much of my pain, stiffness, and fatigue.
Magnesium, for Pain, Stiffness, Fatigue, and a News article I have also lost about 12 lbs of abdominal fat without really trying. I think magnesium has helped me lose fat.
I post this info periodically as I feel fairly sure that an absorbable form of mangesium would help many who suffer from "calcification of soft tissue." That is what AS is all about - calcification of soft tissue - it seems
Quote:
I have been using magensium citrate to relieve much of my pain, stiffness, and fatigue.
Magnesium, for Pain, Stiffness, Fatigue, and a News article
I have also lost about 12 lbs of abdominal fat without really trying. I think magnesium has helped me lose fat.
I post this info periodically as I feel fairly sure that an absorbable form of mangesium would help many who suffer from "calcification of soft tissue." That is what AS is all about - calcification of soft tissue - it seems
With my stomach issues, magnesium is a no-no for me.
Laura,
Do you suffer from Crohn's disease? I have read info sources that say sufferers of Crohn's disease have trouble absorbing Magnesium.
I don't think I have an intestinal disorders except that I used to drink 1/2 gallon of coffee daily. Also, I was once a very heavy drinker, and I would - don't mean to be gross -see mucus in my stools. Also, I was on an extremely high fat/high protein diet.
Now that I am mainly on a plant based diet with just a little meat, I really don't take magnesium citrate to often any more. My stools are already comfortably loose due to all the greens and whole grains that I now consume.
The health industry provides all kinds of disease names for different symptoms. What seems apparent to me is that certain symptoms can have multiple causes. In my case it seemed to be diet and lifestyle that caused me to have the symptoms of AS. I had no symptoms until the age of 43. I am gene negative.
Somewhere I read that health begins in the intestines. Magnesium is a great laxative. Take too much and you will have the runs. But cleaning out my intestines by supplementing with magnesium citrate seems to have been very beneficial to my health. Magnesium relax's muscles and helps you sleep better, among other things.
Laura,
I have read enough about the NSD to be convinced that it has helped many people.
But before my onset, I was on a diet where I shunned rice, potatoes, bread, cereal, and pasta - but I ate tons of fatty meat and cheese. I did keep my weight down, but developed symptoms of AS
I am now convinced that a plant based diet, with very little meat, is the way to go. I do eat potatoes, rice, etc. now and I feel good when I do. It seems the cause of AS symptoms can vary from person to person.
Quote:
Laura,
Do you suffer from Crohn's disease? I have read info sources that say sufferers of Crohn's disease have trouble absorbing Magnesium.
I don't think I have an intestinal disorders except that I used to drink 1/2 gallon of coffee daily. Also, I was once a very heavy drinker, and I would - don't mean to be gross -see mucus in my stools. Also, I was on an extremely high fat/high protein diet.
Now that I am mainly on a plant based diet with just a little meat, I really don't take magnesium citrate to often any more. My stools are already comfortably loose due to all the greens and whole grains that I now consume.
The health industry provides all kinds of disease names for different symptoms. What seems apparent to me is that certain symptoms can have multiple causes. In my case it seemed to be diet and lifestyle that caused me to have the symptoms of AS. I had no symptoms until the age of 43. I am gene negative.
Somewhere I read that health begins in the intestines. Magnesium is a great laxative. Take too much and you will have the runs. But cleaning out my intestines by supplementing with magnesium citrate seems to have been very beneficial to my health. Magnesium relax's muscles and helps you sleep better, among other things.
I've never been diagnosed w/Crohn's and am really hoping I don't have it. However, about the time all of this started I took Calcium to help regulate my intestines. It worked for awhile, then it stopped--I think mainly due to stress. I do know that I had to take a Calcium tab that had low magnesium in it as I had read that it can work the other way (give you the runs), and that's what I was trying to avoid.
Now I have to be on Questran due to having my gall bladder removed last year. Too much bile. My diet has always been decent to good. Not great--I don't always eat a balanced diet yet I am not a junk food junkie, only have 1 cup of cappuccino a day, don't smoke, barely eat fast food, and rarely drink (especially now that I'm on painkillers in the evenings).
Having the runs when I have to go somewhere used to give me panic attacks, so there is no way I would ever purposefully put myself on something that very well may cause me to get that way. Not worth the stress and anxiety. I wish it were the opposite though. I'm willing to try just about anything once.
Laura,
If you have been taking calcium supplements - you very well might have been agravating your condition.
Too much calcium will aggravate a "calcification of soft tissue" condition
Please read the above link - and understand that both AS & DISH involve calcification of soft tissue (ossification)
I haven't been taking calcium for awhile now. Over a year and a half or so. But that's interesting to know because I was taking it when all of my symptoms started. They figured I had/have IBS, and I had never mentioned the popping/catching in my pelvis as I was more concerned w/the stomach issues.
Not having a diagnosis of anything is very frustrating as you never know what's "safe" to take, or do, or anything.
Laura,
Where intestinal issues are concerned, do some google research on coconut oil. I have read some real intersting things.
Here is a link that my interest you.
Coconut Oil as a remedy for Crohn's disease
there are exercises that you can do in the water that wont hurt you but doing nothing only makes you fuse faster keeping as mobile as you can is the best thing you can do....ask mannatee she has some water exercises that aint dangerous and are made for us who have AS....oak
I was in the same situation about a yr ago. What I have learned about exercise is if is causes pain don't do it. For us no pain no gain theory does not apply. I know how you feel about the belly. I have a belly from steroids and IBD along with not being able to work on abs. I have cut carbs and watch snacks. I was able to loose some weight. It is frustrating to not be able to do the physicial activity. My advice; listen to your Dr. The only other thing that I can tell you from personal experience is to do light streches when lying in bed. That will keep you from getting "rusty". Best of luck. Kathy @ moose57
I hear ya,
When things were bad I hated looking at my self in the mirror. I felt like I was being destroyed. Everything bounced when I walked and everything I did hurt. Getting up off the floor hurt, let alone trying to exercise. My doctors promised the meds would help and that doing exercise during a flare was not a good idea as it promoted damage to the tissue instead of healing. So I waited until my body felt capable of exercise.
Try not to think of the things you can't do. Remember you have a disease, it's not your fault and anyone who laughs at you clearly has no idea what you are going through. My girlfriend broke up with me, my boss treated me poorly and even my doctor seemed to think I was over reating (or so I imagined). Rest is a very good thing to do while you have a flare, ya your gut gets bigger and everything gets flabby, but it's the only thing you can do. Keep your chin up, stay as active as you can without pain, focus on healing (meds and diet...then drop the meds - they are hard on the system)
I tried to keep as active as possible when I first got diagnosed. I kept walking with knee braces, I rode a motorcycle (ya I bought a little 125cc bike to get me around, that's pretty much it. Bowling hurt my arm alot, dancing in small doses was OK, team sports were out, and I suppose doing lite aerobics or yoga would have been good (but I didn't do them). Swimming is really good. Basicly you need to do things in a safe environment where you can call it quits whenever you feel you've had enough, where you can control exactly how much you have to put out.
When you're finished exercising, ice your joints and make sure you eat a really healthy diet with plenty of protiens (see the No starch diet NSD). Take suppliments to help you heal. I take multi vitamins, calcium and magnesium (helps reduce cramping), cod liver oil and glucosamine (helps repair joints). Make sure you sleep enough, you need your sleep so your body can heal properly over night. I also tried to stay warm alot, I kept my house really warm in the winter (cost me a fortune).
With the NSD I was able to do more and more activities, I have started skiing again, riding my bicycle, and travelling around with my camera (my hobby, it gets me out an about). I feel great these days and I hope to get back into hiking, running and mountain biking. I've even bought a nice new Motorcycle which takes alot more muscle to handle.
Other activities you can do are resistance training with surgical tubing, exercise in water, skating (gliding along is easy on the joints), or tai chi.
hope it helps
kris