Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Diagnoses

Just read the thread. You got the point James. The obsessing can made a stress and it's not good for us. That's what sometimes happening to me especially last year after i failed my medication and therapy from doctor. I keep trying to find another alternative and found this site, experimenting and do like what it is written here but there still not a result for me not like what others feels. But finally i feel better. But still every time there is something wrong with my body, like today for example when i wake up feel stiff and back pain again. I would curious and ask what causing this. And i plan not to do it again. Before i would just stress out if this happen and regretting myself for a day. And this is not good for us who has AS.

Enjoying my life would be best for us although i found it sometimes not the answer to our problem. This AS really change my life and in the worst period of pain it affect my job or activity so it can disturb and stress me. I need to enjoy it to make it not worse or make the pain gone. But at the same time this AS pain and stiffness can be the cause to why i can't enjoy doing something

I still learn how to enjoy the stiff and pain though. I feel it's easy to live a day when the pain not coming on the day. I become very enthusiastic and happy when the pain is not coming. But when it comes back again, doing several things on the day can be hard

Hi Kiwi, i am as easy as Sunday morning (its a long weekend so i can say that).
* i should have added education as well *
Unless your a Rhuemy, a self diagnoses is nothing more than an impossible pipe dream anyhow - your gonna end up at some quacks office somewhere in the end if you did have AS. AS diagnoses or not pain is pain just ask Jon.

Good post Kevin, thanks.

Back when I was trying (along with 8 other Docs) to figure out what the heck was wrong with me, I stumbled across a definition of Ankylosing Spondylitis and kept right on going. I thought, "Nope, I don't have that." When really I was thinking, "Nope, I don't WANT that!" lol!

So I had to pick my jaw up off the floor when the Rheumy told me that IS what I have. Dang.

Thanks again for the thoughtful post.
-Donette

Hi Diva, Welcome to the forum.
Sorry that your first forum visit ended up being not so great. Don't worry you are doing the right thing by checking things out for yourself. We have all done it or else we wouldn't be here. We actually do encourage people to read up on what they can. It's just that some of us fear that any health problem can consume us if we let it. I wish there was something I could say that would make your first visit a little more pleasant. There are a lot of HLA-B27 negative people here too, by the way.
Take care,
James

Just a note about the comments of spinal involvement being THE key symptom of AS. That was certainly not the case with me. I have had sacroliliitis, knee, ankle & plantar fascia involvement but no spinal involvement. Luckily for me I had all the other classic AS hallmarks of HLA-B27+, elevated CRP & ESR (although only mildly elevated at time of diagnosis), and x-ray evidence of sclerosis of SI joint. If I had been to a doc or rheumy who regarded spinal involvement as a prerequisite for AS then I would certainly have been misdiagnosed or left undiagnosed.

Just my thoughts on the whole diagnosis debacle - I can completely understand why people with AS type symptoms are searching for a diagnosis. I can see how it would be a pointless exersize if there weren't any effective treatments out there anyway but given the effectiveness of the biologic dugs I fail to see why anyone should have to put up with debilitating symptoms when there could be an explanation for them, and more importantly, effective treatments available. Considering the permanent damage that can occur when these things are left untreated there are plenty of reasons to be diligent in searching for a diagnosis. From reading some peoples experiences on here, depending on the individual doc or rheumy, getting a diagnosis can be a bit of a lottery so it could definitely pay to get a second opinion. In a few cases 1 doc says "definitely AS" and then other doc says "definitely not AS". Because most docs are unwilling to experiment with different meds without a definite diagnosis it makes it even more important to get confirmation of what you are dealing with. I also don't see why searching for a diagnosis and educating yourself about different diseases and treatments would prevent anyone from enjoying doing the things that are still physically able to do and living everyday to the fullest. Just my 2 cents.

I agree with you Jroc. After re-reading this whole thread my sense is that the main theme seemed to be concern about the risks of self-diagnosis, not the denial of the need to search for a diagnosis through second opinions. etc.

A secondary theme seems to be around the fear of allowing a health problem to consume us.

There also seems to be some concensus that offering unasked-for advice may not be welcome. I wanted some feedback on what people see as support. I now have a sense that offering unasked-for advice is not considered supportive.

I'm sorry Kevin, that it took you so long to get a diagnosis and hate to think of how long so many people have to carry on before they know what ails them. I wish that all members would try to be respectful in their replies, not post in haste and to try not to take offence where none may be intended. I don't really find it all that difficult to see this from any number of sides.

In all my years here, I don't actually recall a problem arising from a perceived divide between those with a diagnosis, or without; with mild, moderate or severe disease. I can't imagine that there is anyone than doesn't relate to someone else's experience... it is a big boat for everyone!

Maybe I am weird (!) but I think it is human nature to make comparisons and is actually one of the reasons we all find support here. Early on, my rheumy said my AS as 'mild'. It never felt mild. These are medical terms and have purpose. It was after a bone scan (8 or so years after my diagnosis) when my doctor insisted on hospitalising me, that I asked if he still thought my disease was mild and he shook his head - no. Oddly, this was a relief in some ways, because I'd thought to myself, cripes, if this is mild, how bad can it get??? It also signalled to me that my doctor truly understood. Fast forward 15 yrs and I heard the words, "Melinda, your disease is severe."

As I read in KA I find myself thinking, oh dear, that person's AS sounds severe or moderate or mild. Hip replacements, spinal osteotomies, kyphosis, early age of onset, these are not mild! There is a wide spectrum of illness in the spondyloarthropathies, ranging from mild to severe. My brother's is mild, even though his began with heart involvement. He's been in remission for years and requires no treatment. The diagnosis isn't easy and as the majority of members here have probably experienced, a delay in diagnosis is common.

I haven't had a hip replacement, nor spinal operation, nor any operation, no heart involvement, and I'm not nearly fully fused. Members like Alan, Kev, Brad and John, dear James, and anyone who is fairly well fused is not going to view my case as being as severe. Why would they. Hey, I wouldn't if I was them! lol Mine isn't as severe, plain and simple. If someone didn't understand my condition then maybe I'd give some thought to how I have communicated to the group.

I write of my experiences here in the hopes of helping others. It isn't to make others feel less or more important. I do it because I realise how much reading about the experiences of others has given me strength and comfort. It is a unique sense of community. I love to read how others with more severe disease than mine carry on so bravely and still find hope and happiness and laughter in their lives. I love to read about others just starting on this path as they find new ways to control their symptoms or learn new ways to cope or depths to their strength that they never knew they had. And I know what a relief it is to get a diagnosis and finally be able to associate a name to what ails you. I love to see the feedback people get from others when they are worried about some new scary symptom. I would hate to think that sharing makes anyone else feel their pain is somehow less important -- of course it isn't!! Illness can be scary and support can help us put things into perspective and to feel less alone.

When I read of someone just recently diagnosed, I tend look for similarities. I try to read between the lines, often asking questions. Have they suffered iritis, how do they describe their symptoms, how did it start, how restricted are they in their daily lives? I try to form a picture from their words so that I may offer relevant insight or something of value that may serve to help or support them. I try to do the same thing with those who haven't received a diagnosis or don't have a name for their set of symptoms. KA is for anyone who wants to post here or feels a connection or can relate to what we describe and is looking for answers. If I don't feel like I can help someone or feel they have already been helped, I move on to read the next thread.

When I invite suggestions from others members, I appreciate all the replies for the time and caring that someone took to go to the trouble of replying. It always amazes me how very generous some people are. I'll probably find some to be more helpful than others. Like anything on the net, I'll take what I like and leave the rest. If I make a reply in trying to answer someone's question, and I am incorrect, someone will come along to correct me. This is the beauty of message boards. Brad reminded me of this recently and it's so true.

Like in anything, if I really try to put myself in someone else's shoes (well, not Alan's his are way too big!!) then maybe, hopefully I will appreciate where they are coming from and be able to empathize.

How any of us defines support may not be exactly the same yet it is mainly to offer encouragement, sympathy, empathy, or to be comforting, to help, to motivate, to assist or to aid one another. If I don't think I can be of any help to someone, then I won't post. If I think I can help then I will. If I think I can help but someone does not appear to be interested in my help, then I will take the hint and not try to force my opinion on someone.

This is a home for all of us. Anyone who expects to relate to everyone in a community this size, or who thinks that everyone else should be like them, or should only ever agree with them, or should automatically relate to them, post like they do, be interested in the same treatment approaches, or experience identical symptoms or severity -- is expecting the impossible and missing out on what is the beauty of KA; that we are all different and bring a myriad of different experiences that all relate back to living with chronic pain and disease.

If you understand what pain is like and know how it can get the better of you at times, then we should be able to appreciate, that every day, someone in here is not going to be at their best or may be feeling more alone or discouraged. If we are going to err, it should be on the side of generosity. KickAS is a place to offer one another support, if you are not feeling in that frame of mind, just read for a bit.

Take care all.

I hope there isn't such a consensus, because people don't always know when you have good advice available for a particular situation, and so won't think to ask...

In my opinion, you goofed once recently when offering advice, but given the number of posts you've done that is not a bad record. Donette already said that she would miss your advice if you decide to play it safe and only offer sympathy without advice. Hopefully you have since managed to make it up with the person offended, and can move on to many more productive posts until you goof up once again (even moderators are human, eh?)

Wow Mig. Great post.
I would just like to add if I may, that I truely believe it is ok to dissagree with each others post. This does not mean that because we don't agree that there is a problem.

I wholeheartedly agree with this part of your post particularly.
"I wish that all members would try to be respectful in their replies, not post in haste and to try not to take offence where none may be intended. I don't really find it all that difficult to see this from any number of sides."

Trish
xx

Thanks SJLC - but you see my "goof" is still being quoted back at me so I felt that reinforced the fact that my advice was not welcome.

I've actually begun to wonder whether KA is the place for me.

I appreciate your recognition of the human-ness of each of us and Jeffery commented elsewhere on his sincere belief that people post with good intentions. That was also helpful.