Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group AS onset, progression, etc...

Hi all,

First of all, I should mention that I apologize for constantly posting questions and stories about myself.

I read about everyone's problems and deeply sympathize and empathize as much as I can. I often don't respond with encouragement or whatnot because I'm so new at this that I feel I don't have the experience or the wherewithal to give a good response.

So, that being said, let me move on to the main reason for my post..

I've only had AS symptoms for about five months now... and looking back, I believe it first started mainly in my neck.

I woke up this morning with a ton of stiffness in the left side of my neck. I've had stiffness in my neck a few times in the past couple months, but not this much. I turned my head back and forth to stretch and heard a disturbing cracking/ripping sound.. that's a new one on me.

Anyhow, it seems to me that most people here started out with symptoms in their lower back. I've also read that women are the ones who usually show signs in their neck.

(On a note, this stiffness seems to have coincided with both a bad head cold, and having eaten a small slice of pizza on Wednesday, and basamati rice last night.)

Any thoughts/insights on this one?

Also, I can pinpoint when my symptoms started back to when I got sick with a flu or something in March. Developed a burning pain in my lower back, then pains in my groin, neck and dry eyes. Since then I've been getting pain and cracking/popping all over my body, SI pain/clicking, continued eye irritation, weakness in my let arm, muscles twitching... and so on.

(But the rheumy doesn't seem to think it's anything to be concerned about!)

I just wanted to throw this out there because, from what I've read, my experience has been vastly different than any else's I've read. I haven't had undiagnosed symptoms for years, no family history... just a strange, sudden illness.

Basically, I'm wondering if there is anyone out there like me. Perhaps that's why we're all here, anyhow.

Thanks for listening.

Namaste,

Colin

I had problems with neck and back for years bat wide spreed pain did start suddenly after viral illness. Have you tryed NSD yet it has helped me alot even tho no radialogical evedance of disease?

Hey Colin,

First of all, no need to EVER apologize for how much you're posting, especially when you're new here. After all, if ever there was going to be a time when you were going to have tons of questions, it would be when you are brand new to a site. After all, once you've been here for a while and become a crusty old veteran like me, much of what you read here will either sound very familiar or, at the very least, trigger a small bell deep in your brain that tells you you've at least heard of the latest topic in passing and that all it will take to dig up that topic is a wee bit of searching through the database. So seriously, don't worry about offending anyone, and don't feel you need to apologize for asking questions. Learning you have AS for the first time is a very scary thing, and if you are dealing with a circumstance like yours where your symptoms don't seem to match the classic disease definition of AS, well, it only stands to reason that you're going to have even more questions. Also, when you do ask questions, it's good to include as much specific information as you can about your current dilemma, as the more readers know about you and the latest incident, the easier it might be for them to either answer your Qs. Capische? So, I'm telling you the same thing my mom tells me over and over and over (although I have finally gotten much better!): "Stop apologizing!" She always says it with a laugh, which I am also doing, but it's her way of telling me that people realize I have to ask for help more than the average person and that's it's totaly OK! Not only that, the people who end up helping me do so because they want to--they enjoy helping me and it also draw satisfaction from being able to help. Trust me--all the good folks here at KA view any request for help the same way, so you never, ever have to worry about apologizing for asking questions or asking for help.

Second, I want to chime in with a bit of personal advice--personal in that this is coming solely from me and doesn't necessarily represent group-wide opinion, as opposed to the kind of personal advice someone might offer if they were a really good friend and had to tell you that you had awful B.O., or something equally "personal" and/or embarrassing!

This particular bit of advice is coming straight from personal experience too. In the early days of my illness, and even from time to time now, I tended to drive myself crazy every time I experienced new aches or pains, or actually any kind of change in the staus quo at all. What made me nuts was that whenever anything new popped up, I immediately tried to tie it back to the AS, or tried to decide what catastrophic thing had gone wrong now and was sure to start hurting like crazy any minute thereafter. I did this to myself for a long time before I finally recognized that there were two major flaws in this way of thinking. First, with AS, it is often almost impossible to recognize "why" something starts hurting, or "what" caused a new pain to pop up when it did. With so many of the major joints involved, and often to a very significant degree, it can be darn near impossible to pinpoint why something is happening. For example, for years my knees and feet hurt something fierce and displayed all kinds of different symptoms, from huge fluid build-ups on one knee to apparently out-of-nowhere bruising around the ankles on both feet. In the early years of my AS, I always used to assume these were independent aches and pains that simply demonstrated the latest expansion of the AS monster, thinking that things had made that logical progression from my hips to my knees to my feet. It was only when I got around to having my hips replaced that I learned how much of my line of thinking was a bit off. As it turned out, much of the pain in my knees and feet developed as a result of the growing pain and stiffness in my hips and the subsequent drastic alterations it made to my gait and posture. As the muscles and tendons in my legs developed serious contractures, my feet turned distinctly outward and one leg became quite a bit shorter than the other.

Well, that just proves I was right, that the AS had progressed into the knees and feet, right? Yes and no. Yes, the AS in my spine, SI joints, and hips directly caused the problems in my knees and feet, but no, not the way I had been thinking. In my mind, the knees and feet were experiencing "true" AS involvement in that they were becoming fused and thus I was losing range of motion and feeling more pain. That wasn't the case at all. The fusion and subsequent kyphosis in my spine, together with the damage in my SI joints, led directly to the the first gait and posture changes, which in turn led to the erosion of the cartilage in my hips until I was bone-on-bone and in agony, which then untimately led to the problems in my knees and feet. To look at me today, you'd see that my right knee was completely fused and no longer moved more than an eighth of an inch, but is it became calficified like my spine? Not from what I've been told. No, it lost most of its mobility because it too went to bone-on-bone, as my hips had, but unlike the hips, I did not get the knee replaced. This was due in large part because I was told by several doctors that I should wait as long as possible to have the knee replaced, but unfortunately not one of those doctors said, "Wait as long as you can, BUT whatever you do, do NOT wait until the knee is totally immobile before you come get it replaced." Now did some calcification eventually occur in the knee to contribute to the fusion? Sure it did, no doubt about that. But did the knee--along with the other knee (which still moves a fair amount) and the feet--originally develop pain for the reasons I suspected? Actually, no.

So the point of all that is simply to make my first point with the most graphic evidence I can--my own knees and feet. Here I spent all that time worrying that "classic AS"--for lack of a better term--was slowly fusing all the joints in my knees and feet, when in fact everything that happened was originally a by-product of the terrible gait and posture forced upon me by the aggressive AS that nailed my spine and SI. Seeing as most of the tiny joints in my feet are now all fused, I have no doubt that the "classic AS" has entered the picture and finished off the mechanical damage that the bad posture started, but when did the pain from the posture end and the pain and fusing from the AS start? A guy could go crazy trying to figure that out, trust me on this.

Ok, let's move on and go back up my outline to where I originally said I had two points. I am done with the first one, which dealt with spending too much time trying to figure out "why" a new pain was occurring, so let's move on to the second one, which is even more basic:

Sometimes a cigar is just a cigar.

So said Freud. Now, don't worry, we're not going off on some deviant path now. I use that phrase because it's well-known, but for AS purposes, we can substitute any number of words ro phrases. Such as:

Sometimes a cold is just a cold.
Sometimes a charley-horse is just a charley-horse (or the variant: Sometimes a muscle ache is just a charley-horse.)
Sometimes a pain in the neck is just a pain in the neck. (. . . or the wife, or the husband, or the boss . . . "Thank you, thank you ladies and gentlemen. Hey, try the meatloaf, I'm here all week, and folks, don't forget to tip your waitress." Just can't help those bad jokes sometimes! )

Anyhow, I think you get the point. With the early stages of AS, it is pretty common to wake up with an ache or pain that was not there the night before. Hopefully, in your case, you won't get too much of this because you have caught things early on and you should be able to benefit from a lot of what you read here, such as the NSD, etc. Even so, as you have seen already, you are going to have new things start hurting. Any time that happens, try to take a deep breath and stop yourself from immediately assuming the worst, That is very easy for me to say, but it was very hard for me to do. In my early years, I was the absolute WORST about assuming absolutely the most negative thing I could whenever a new pain came to town. I won't lie--sometimes those new pains were harbingers of new AS complications. More often, however, they were nothing more than the common aches and pains we all get as we get older. Maybe I slept wrong and really put some stress on one of my shoulder joints, or maybe I couldn't move my neck as much as the day before because I had spent that previous day painting and looking upward much of the day and didn't remember that when I first woke up. Maybe . . . well, maybe any one of a million things.

Don't get me wrong on one thing here: I am not in ANY way telling you to ignore new aches and pains when they occur, nor am I trying say in a very, very passive-aggressive way that you really shouldn't be peppering the board with so many questions about new ailments (in fact, after spending an entire paragraph telling you to never apologize for asking all the questions you want, if I was using the rest of my post to indirectly tell you to suck it up and NOT ask questions, that might well be THE most passive-aggressive move of all-time!!! And trust me Colin, I don't have that much subterfuge in me!!). No, all I'm saying here is that one important thing you will discover as time goes by is that you are going to need to find your own inner tipping point when it comes to new aches and pains. Only you can decide what you will allow to freak you out and what you will handle without no more than a passing thought because you know it's not important. By talking about this dilemma in such an open way, I'm hoping I can make it easier for you to recognize this oncoming situation and also make it easier for you to determine how you'll react to things, but there's no guarantee that either of those things will happen. Learning to deal with pain and learning to recognize what is and is not serious is such an overwhelmingly personal journey that no matter how much reading you do, no matter how much other AS kickers talk to you about it, ultimately you will have to find your own path and determine your own set of actions and reactions,

As you discover that path, however, the best advice I can give is this: Don't let the man get you down. Yeah, the "man" in this case is AS, but whatever you want to call it, whatever analogy you want to use, the message is the same: Don't let the AS beat you, and along the way, don't let it make you crazy. It will try like h*** to do both of those things, so you have a tough fight in front of you, but always remember that you've got every KA member only a "Send" button away to help you out whenever you need that little extra boost. Between us, we've got about, oh, a billion years of experience fighting this thing, so to use one last bit of paraphrasing, "Lean on us/when you're not strong." Trust me, we'll always be here to help.

(Thus end your first seemingly endless "post by Brad," Colin. Hope it helped even a little.)

Brad

Hi Brad - as a new AS kicker, I wanted to thank you for posting this. It's really true that one could go a little nuts trying to explain to oneself all the seemingly endless aches and pains that come and go as a result of this disease, and differentiating them from the aches and pains associated with just being alive. For me, this is very important to remember, and helps in dealing with docs as well. I have a relative who brings ALL her little aches and pains to the table, and so gets dismissed out of hand by medical professionals. This is not to say that she doesn't have valid concerns, as she definitely does, but it's easy to overwhelm the doctor and they sometimes have trouble sorting through it all. Luckily, I have a very patient doc who is also a friend, so that helps when I DO have to bring all my endless issues to the table. Not to say I have issues! Who said I have issues? Or that I ramble? ANYway, thanks!!

Even though this was written for Colin, being a newbi myself I can take away alot of good advice from your post. So, thanks!

Namaste,
Mine was a sudden onset like yours. Believe me i rarely even had flu in last 30 years. But last december It started from my upset stomach. After stomach problems i started to feel that my neck area was getting stiffer and then my rib cage then my upper back. By April within 5 months I wasnt even able to get up from the bed. After all anxiety/depression/GERD/Gastritis/Bulging disc and all those crappy diagnosis i begged for an MRI and MRI showed significant inflamation in the neck area. Infact MY C5 and C6 was already propalsed, thanks to stupid doctors who diagnosed me with anxiety/depression. Even after MRI doctors were saying ... OH Well it,s just a spondilitis .. take some NSAID and get going. # months ago i saw a colon doctor , she said that i have infected fistula and after I get rid of this fistula i will be just fine. Well I had surgery after I started eating everything again as per doctors advice. But my pain went even higher than before. Wel after 7-8 months of pain I found this website. I tried the LSD with very little effect on my pain levels. Now I am trying the NSD ad already seeing some improvement in One month. I now that NSD works for my pain but my stomach and colon seems to reject the New diet with diarrhoea. Now I need to find a way to Get the diet right while not bothering my stomach.

Hey Colin,

Mine also started in my neck. As a matter of fact, I was outraged that the rheumatologist was looking at my hands and SI joints in xrays and MRIs when my neck hurt so much... She never really bothered to explain either. And I crack and pop like an orchestra. It's sick.

I also have no family history, though my paternal grandather had gout and his half sister had and their mom had a hunchy back. And I don't have the gene, but I def have AS - SI sclerosis and have had bilat iritis so the dx is pretty much sealed.

I think we all experience the onset differently and progression differently, and to listen to drs, they live by statistics, by just b/c something is statistically uncommon, it doesn't mean it doesn't happy - just a frustration of mine.

And HLA gene is only one of several that plays a role. I was researching to see what the difference is in being + vs - for the gene, and they really don't know other than with blood levels it seems??...

My rheum told me -'s have more thoracic involvement, which is def me too. (you're HLA negative too right)

Good luck, Be well, Jessica

Exaclty the same here -- kept saying it was depression and anxiety and giving me zoloft and klonopin -- Until he finally wanted to run bloodwork and SED rate was very high, repeatedly. I had to actually insist on seeing a rheumatologist. GPs can really be uncool sometimes.

I've had 2 car accidents (both NOT my fault, hit from behind) since being dx'd 1 yr ago, and I have facet syndrome on both sides of pretty much my entire spine, plus at least 4 herniated discs that they have found so far. Who can say what is from what???

Sorry to hear about your disc problems too, I know it is NO FUN!
Be well!!!!!!!! Jess

Hey Colin,

Welcome the world of posting. I'm also new here and have no compunction toward posting about anything at all, whenever a thought crosses my mind. I also don't hesitate to offer words of encouragement or advice (for what that's worth) whenever I feel motivated to do so. Personally, I think the very aspect of writing in here is somewhat cathartic, like journal writing - just do it. I feel better talking about these issues and knowing that you and the others can relate to what I'm going through helps a lot.
More to the point, my symptoms came on like a freight-train only two years ago. I injured my back at work which never healed. My doc did some blood-work and X-Rays and told me I had AS. The anti-inflammatory drugs I was given apparently caused Ulcerative Colitis which landed me in a hospital for three weeks. Ever since then, I have lived with chronic pain throughout my entire body.

I have not considered the causal nature of every ache or pain in my body, to me it's really all the same kettle of fish. I got shoe-laced by two diseases and my life has changed dramatically. That's all I can really deal with right now.

I was an Archaeologist who climbed mountains daily doing survey work or spent two months in a one square metre hole, I worked on bottom-trawling fishing boats and joined the military at the age of 33, doing basic training and yearly physical fitness tests which I passed with flying colours. Now, I can barely climb a flight of stairs, I can't type more than a couple of sentences at a time without pausing to rest my fingers and wrists.

My back hurt occasionally throughout life, I went through brutal "growing pains" as a young man, they even detected a curvature in my spine when I was 9 or 10 but this "scoliosis" fixed itself as I grew? Today, every part of my body that moves, hurts. From toes to jaw and out to the fingertips...fortunately, it isn't typically all of them at the same time but the joints that get used most often also hurt more often. The lower back is the big one, it always hurts without exception - it's just a matter of degrees.

The muscle twitching is something I can relate to but I've always had that, I never really thought about it before - it is just an odd thing that I find kind of intriguing or amusing.

The cracking noises are a joy for me. I use it to make skiddish people cringe...lol. My neck makes that grinding, crunching noise every time I move it, my knuckles crack louder than anyone I've ever heard and I do it often, my ankles will produce both the crunching/grinding with a loud clicking thrown in. When I try to correct my posture and sit straight up (this alone is essentially stretching for me) there is a satisfying and almost musical cascade of crunches that flow throughout my spine. As far as I know, there is nothing to do about it, it just is. When people tell me "don't do that to your knuckles, you'll get arthritis" I just kind of smile and say "yeah, I've heard that before".

It reminds me of the Serenity Prayer...accept the things we cannot change. We click and crack, so what? I think it's cool.

As for "classic AS symptoms" I've also never given that much thought either. It seems to be a disease that is barely understood, the members in here are more knowledgeable than the vast majority of family doctors (not that anything you find in here should be taken as gospel - always talk to your doctors about questions!) What I read when I look it up doesn't seem to match my condition completely. I also know I have AS, there is no room for doubt (HLA B27 positive and damage to the sacro-iliac region that shows up in X-Rays). Many references speak about the back and neck, some mention peripheral problems and fewer still list a handful of other joints that can be affected - I've never seen anything that mentions what I live with so I just figured I'm a freak...I also have no problem with that terminology. Being different is a good thing, being a rare case that doctors are confounded by is great. I would hate to be like everybody else.

My advice is to embrace your differences. Accept the things you cannot change and move forward, trying your best to live the best life you can.

Does any of this make sense or am I just rambling?

Please stick around, write often and listen to what others have to say but ultimately you know your body better than than any doctor alive, listen to what your body is telling you.

Oh and by the way Colin, a good friend of mine suffered with horrid back and neck pain for years. He was also into the patchouli, birkentocks and basmati rice lifestyle and insisted his pain was due to dairy products. He later discovered he had AS - strangely enough, he never told us the name of his disease and to be honest, many of us (his friends) either didn't believe him or didn't know how to take it. Several years later, when I told him about my diagnosis he exclaimed, "Hey man, that's the same disease I have!"

Come to think of it, I don't know if he is aware of this site? I'll forward him the link immediately.

Good luck Colin, I'm going to give you some very cool words that I quoted in another post recently - it's from the show "Heroes"..."My momma used to say, God don't give us nothing we can't handle"...I'm not a big fan of organized religion but I really like this sentiment. Hang in there Colin, you're going to be you and that is just fine.

(what is with these dissertations in here today?...Sorry)

these are some great dissertations
lots of good advice...
thanks guys.

if i weren't so unique, the doctors would have figured me out by now.
10 years and dozens of doctors later, and i'm still a mystery.
i never realized i was so special.

patience is important.
it can take a long time to get a diagnosis when you don't fit the mold.

but do what you can to be proactive.
a dx would be nice, but
i've found doctors that help me manage the symptoms.
not perfectly by any stretch of the imagination, but its something.

but, the serenity prayer really does come into play here:
i do what i can and try to forget about what is out of my control.
so i see doctors who help manage my symptoms
and i keep seeing different doctors to try to get a dx
and the rest i forget about.

sue