im curious how other people know what symptoms are being caused by their AS and what is from something else? i experience symptoms such as fatigue, general muscle pain, lots of headaches, shoulder and upper arm pain.. and i get confused as to what is being caused by AS. a lot of times i just really dont feel well, so i start to get concerned that something else might be wrong? (i hope not!) especially with the headaches.
any input, advice or other experiences would be helpful to hear about... im really set on healing this to the best of my ability, and not letting it take over my life anymore.. but sometimes i get really discouraged, lonely and confused.
thanks in advance

kelly

do you flare? if so, then what i tell you could be helpful.

for me, when i flare, the symptoms come on together, not all on the same day, but one thing followed by another followed by another, etc.

so if my joint stuff is feeling pretty good, but i have a headache, the migraine is probably due to something else. or if all is well except for feeling tired and achy, i'm probably fighting a cold.

but if i start having constipation, increased neck pain, can't be on my feet as long (due to the plantar fasciitis), feeling like i need a lot more sleep, getting irritated eyes, mouth sores, odd skin rashes, then usually shortly thereafter my SI joint will really hurt and/or my upper back and ribs will really get involved, i might start tearing tendons. when the symptoms come together, over and over again, i know they are related. otherwise, i assume they are not.

hope you find this helpful.

of course if you just feel about the same most of the time, and don't have flares, then it would be harder to tease it all apart.

for the longest time, i didn't realize how fatigued i got as i was going into a flare. but i sleep 4-5 hours in the recliner, then 4-5 hours in the bed. and i'm still so so tired. the same kind of tired i get when a head cold or the flu is coming on. but what happens after that is what differentiates if its an autoinflammatory flare, a viral bug, or in the past, my menstrual cycle.

a few additional thoughts:

anything i had for a long time before the inflammatory arthritis, i don't chalk up to the inflammatory arthritis.

that's mostly my migraines. but i've learned most of the triggers a long time ago.

hormonal symptoms too, though those are now behind me.

and anything related to insulin resistance. i've known from the time i was a teen / in my early 20s, that diabetes runs on both sides of my family. and i've had issues with sugar (feeling really awful if i'd eat too much) from the time i was a kid. thus knew i was dealing with blood sugar stuff by the time i was in my late teens / early 20s. thus when my blood sugar became prediabetic, my cholesterol started going bad (high LDLs, low HDLs, high triglycerides - though got the last 2 turned around now through LSD and exercise), and then the weight started to creep on, and even complex carbs started making me feel the same way sugar did, knew all of that was from insulin resistance. also assuming the fluctuating blood pressure may be related. learning that the constipation can be related to blood sugar as well.

and now learning more and more how insulin resistance and inflammation can be linked. and/or how GI flora can be linked to not only inflammatory illnesses but other things like insulin resistance. so, whereas i thought i could tease apart the insulin resistance and the inflammatory arthritis, i think they may be more related, and overlapping in symptoms than i once thought.

it took a while for me to make the connection between the GI stuff and the inflammatory arthritis. as i developed IBS then gastritis 5-6 years before i developed the inflammatory arthritis. and initially they didn't seem to flare together; when the inflammatory arthritis hit 5 years after the gastritis, i had the gastritis and IBS pretty well under control. it was only many years into the inflammatory arthritis that the gastritis and/or IBS would flare along with the SI and other joints. then i finally made the connection. don't know why a doctor, especially the rheumatologist didn't ask me questions about GI issues. i would have gladly shared my GI woes, and then maybe one of those rheumatologists could have put it together. but not one asked me about GI stuff, i had to start offering it up without being asked, once i figured out that they could (and as it turns out are) connected. finally the rheumy that dx'ed me, and my current rheumy asked me about GI stuff almost immediately after i started talking about my back, neck, SI, and various tendon issues.

Hi Kelly,

Welcome to the boards. When were you diagnosed with A.S.? Have you been tested for anything else? There are so many different diseases out there. There is also the factor of being older or a male or female. You could have arthritis in your shoulders and other areas. Headaches or migraines can be brought on by female factors or once again, other diseases. Have you seen one Dr. for all of these things or different types of Drs.? Do you see where I am heading? One size does not fit all.

I have arthritis in my left shoulder due to an old shoulder surgery as well as having A.S. I also have anemia brought on by having A.S. that brings on symptoms I never dreamed about. I also have Fibromyalgia which is a beast all unto itself. How much have you researched A.S. I see you are a new member so that is why I am asking a lot of questions. The more we know, the better we can help you and trust me on this, we learn just as well from our new members. Welcome. Glad you found us but sorry you had to.

Hello, kelly:

It is very simple: If You have AS, then just about everything and anything new is just another symptom of AS.

I am not a doctor, but I am a 'lumper' instead of a 'splitter;' AS could be called hundreds of different things, but all of them are just symptoms or sequelae of AS.

The confusion might be for an older person with AS thinking they could also have RA and in general symmetrical symptoms would be attributable to RA, especially characteristic hand issues that lead to deformation. Asymmetrical symptoms would most always be another result of AS. If it is due to inflammation, it is almost certainly due to AS over anything else. A physician might try and sell You another diagnosis, but do we wear these like war medals? Really all they prove is our own gullibility and the AS-ignorance of so many physicians and especially rheumatologists who should know better.

I have said before that AS is MORE THAN ENOUGH all by itself: AS: "My name is LEGION..."

HEALTH,
John

main difference in normal pain and AS pain is that normal pain increases with exercise whereas AS pain decreases with exercise....

http://mypartnerspondylitis.blogspot.in/2012/05/what-are-symptoms-of-ankylosing.html

do think you have to be careful with that one. while being immobile is bad and movement is good in general, too much exercise can make things like my SI joint, feet, tendons if i have tendonitis at the time, worse.

i used to be able to swim, but now that seems to always bother my SI joint. and if its flared, even walking bothers it. stairs used to bother it more before i started wearing the flector patch.

so, i think it depends. a little is good, but more can be too much. and it depends on how the body is doing as well.

for me at least.

i agree with you .. i was just telling a basic condition that we notice when it is not diagnosed.. after diagnose you have to be very carefull that you dont take exercises to extreme...

Have to agree with John after 40+ years with this AS all mine are tied back to AS.But always have new things checked by a doc.
Bradford

wow, everyone has been really helpful! i got diagnosed a few years ago.. this has all been pretty tricky for me. for the first year it wasnt all that bad, i thought i could fight it with a good diet and exercise (not the low starch diet, just what i thought was good food i have been gluten free for about 5 years now.. i was very ill for about 3 years until i found out it was gluten that was making me sick, than 3 years later i was diagnosed with AS. im 27 years old and very active with athletics, yoga, etc, so this has been pretty hard for me. i thought doing a yoga teacher training would help the pain, and it ended up making things much worse for me things got so bad that i ended up going on enbrel which worked for a few months than made me feel worse than before, so i stopped taking it 2 weeks ago. im back to hurting quite a bit now. i pretty much just hurt all the time, and every once in a while i will have a day of excruciating pain, and flu like symptoms.. im wondering if that is what a flare is? i kind of feel like i have a mild flare all of the time now. my next step is to do the low starch diet but it seems pretty overwhelming to me. i know i have to try something though. my gut issues are so much better than they used to be as that was a long battle for me. i also have autoimmune thyroid and take synthroid for that.. that seems to get out of balance a lot as well, and i wonder how much that contributes to me not feeling well. i think the most important thing for me is to not dwell and obsess about there being "something wrong with me" as i think that is what makes me feel worse than anything, and i get very hopeless and obsessed with reading things that just make me feel scared and alone. so i am really just looking for some hope and understanding from some people who are going through the same thing also some advice is always good too.. ive had a lot of bad experiences with doctors and not feeling heard, so i am hoping this can be a place where i can share. thank you to all who have replied. much appreciated.

kelly

Hi Kelly and welcome. You came to the right spot. We are all here to learn, listen, vent, yell, encourage and to feel like we belong with others who are going through the same thing even though we all are at different stages.

I think most of us hear have a bad Dr. or two and some of us have a good Dr. story or two. Share anything you want and ask all you want.

There are a lot of people on here that are on the LSD or NSD that will get you seriously kick started and like anything, you have to commit to it and stay with it before you say, I really tried. I don't know by your name if you are a man or a women but if you ask one of the Moderators you can get on the Womens or Men's forum. We do have them, but you can't see them. They really help for the more sensitive subjects. Welcome!