Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New,and searching for advice.No Dx yet

Hi Tracy,

Indeed my pain changes all the time. In one week alone I will often get pain in all the following places: heel, buttocks/sij, groin, low back, upper back, shoulder.

My Physio told me they used to call Spondyloarthropathies 'galloping arthritis' because it seems to gallop from one joint to another. Funnily enough I usually find that only one or two spots are really sore at any given time. Unless I am in the middle of a flare when I just feel sore all over.

Make sure you find a good Rheumy who is not put off by you asking all the questions that you need to - just remember, that's his/her job.

Good luck!

Hi, yes, indeed, AS pain moves around, changes in intensity. I call it the Bits & Bites of the arthritis world. A whole new day, a whole new pain sensation.

You don't say how old you are, but the 'age-related' crap only really applies after a certain age, and even then might be AS or some other form of inflammatory arthritis. I'm guessing that you're probably in your early forties?? Not old enough for it to be age-related, especially at the intensities you are experiencing. This is not normal. For anyone!!

To prepare for your doctor's appointment, make a list of all your questions, then put a star beside the three most important to you. Hand the entire list to your doctor so he/she can see what is important to you, but also determine whether or not something else on the list is medically important. Also, make a list of any changes in your condition since your last appointment and give that to your doctor. Both these lists will help maximize the time you have with him/her, and let him/her know that you are serious and take his/her time seriously.

Based on your symptoms, I would also strongly ask for a referral to a rheumy. You are entitled to it and your doc cannot deny you this without a truly good reason.

Good luck at your appointment.

Hugs,

Going to try and remember all of the many things mentioned to me, sorry if I've missed you, but you've all given me so many avenues to research, and so much great information.Smile is definitely brighter inside now that I have resources and all of you! *hugs*
Ok... where to start? lol
I just turned 41 in September, too young I THINK to out of the blue have my body crash and burn for no good reason. I was strong and able to take care of anything, and all of a sudden I'm in an 80 yr olds body?? I don't think so!! *smirk*

I have a family doc that I haven't seen in a couple of years who works out of Toronto Western. She is spectacular, but due to the driving, I have been seeing a gp local to me who is clueless as to whats going on, and more often than not looks at me as if I'm whining and basically the "jist" of it seems to be, just deal with it! He has given me pain meds, which I hate to take, but can't work nor function well without, especially first couple hours of morning, and in eve.Unfortunately I know it does NOTHING to deal with what's going on in my body, nothing to slow down any progression, and only masks the pain so I can work hard or just barely get around some days. Hence, I've got to do as most here have suggested and be proactive. As John said, they will do nothing if I do not get out there and help myself. It's not them that will suffer in the long run when 10 yrs down the line they finally say "ahhh oh, now we know what it is".

Question... how would one know if the rheumy..(wont ever see him again!) put me through the B.A.S.D.A?

another... lol EDS, is this difficult to diagnose? I do have hypermobility for sure. Fit all the signs and always have.. Have been told all my life that my skin is velvety soft..lol and eyelids...well. I have none, because my eyes sink into my head and they are more like flaps of skin! *Rolls on floor*

I know that the University Health Network is in my opinion a Wonderful place, and so full of knowledge and learning in so many areas. That's the place I'm attempting to get a referral to. If my family doc here won't do it, Ill go back to the family doc at Tor. Western and get one from her!

Trish.. may I ask, what is LDN?? You've got my wheels spinning wondering..lol

Oh, and my eyes.. blurry on and off for years.. last time I had it was when I believe I was in a "flare"... they go blurry for a few days, sometimes longer and then it just disappears!
I did go in to see an eye doc after the black fluff appeared in my eyes.. but it was the following day. He put drops in my eyes, and looked after some time into the back of the eye. He said there had been bleeding from vessels in the back, but that it was clearing up. So I'm now left with what they call "floaters"..and sometime after they appeared in the one eye, they also appeared in the other. No, he did nothing nor suggest I go see my family doc as to the cause, so I figured it was normal and went on my way!
I'm getting so much more strength from being in here amongst you all.. and I will carry on and get to the bottom of it, if it kills me..!! No one should be dismissed or looked at as if they are only searching for pain pills.. and it feels awful to be looked at like that!

* big warm hugs*
Tracy

You must have heard of the "Book of the Month Club", we are all in the "Joint of the Day Club". I'd laugh if it didn't hurt so much.
Donna

LOL Donna... I did laugh, thanks to my pain pills I can dig, climb and haul.. but it's not fun knowing I pay for it when those 4 pain pills my doc kindly gives me per day wear off!

I know how that feels... Laughing, coughing (as Ido so very often especially in the morning..can't breathe very well then) and sneezing.. OMG gotta brace yourself for that!!

It's crazy how it changes so frequently.. most mornings bending or sitting are next to impossible until I manage to push back on my low spine,tailbone area and sort of clunk it into place.. then sitting is a bit easier.. its just all over the map isnt it!?

grrr
Tracy

Tracy, my sweetie and I are both with the rheumatology clinic at Toronto Western (he has Psoriatic and I have AS - total coincidence). They are awesome there and if you can get in to see one of them, you'll be in very good hands. The drive is a pain in the AS, I know, but would be worth it as far as I'm concerned. And because you have a GP there, the referral should be a no-brainer.

Just my opinion, of course.

Hugs,

There ya go Tracy - There's your answer. Get thee back to your good doctor, get a referrel to the Toronto Western hospital (that's Inman isn't Kat?) and take it from there. (Would LOVE to be a fly on the wall 'when' you see Dr 75% clonker after seeing a good rheumy, watch his face as he 'digests' the report...hahaha). Me? I'd also wait for the MRI until you get to the Toronto Western Hospital. Makes sense. UNLESS you can get a Saggital STIR etc etc where you are now. But, you'll need to take the scans with you to the T. Western appointment. So, ensure that YOU get a copy on DVD disc.

You go gal - we're all cheering on behind ya.

Hi again.
LDN is low dose naltrexone.
http://www.lowdosenaltrexone.org/
Try that web site has loads of information about it.
One thing that atrracted me to it was that there are little to no side effects.
The only side efeects I had were the typical LDN headache that only lasted a day or 2 after starting it and then same when upping the dose. Also had sleep problems for a few days. All side effects stopped after a few days and this is normal.

Also have a look at this
http://www.youtube.com/watch?v=_hLCEaqWbcA
Should be a youtube video titled Google LDN ! Part one.

Have a look when you get time and let me know what you think if thats ok.

All the very best with your apps.

Trish
xx

Thank you, Thank you Trish... just watched the video! I haven't yet done the research, but it got my wheels spinning again...lol

BTW your children are beautiful, and thank you so much for all your help..

Kat and Molly... Great advice..and yes, I will not stop until I get myself to Tor.Western.
I've actually been telling myself now for months that it is the place I want to get to as I've already had some other issues over the last 20 yrs that various teams there have dealt with..and they were always so knowledgeable and kind..
Thank you ! Going to do my writing and research.
Be well
*hugs*

sorry about all the spelling mistakes, I was typing very fast so I could put dinner in the slow cooker so it would be ready before hubby goes on night shift tonight.

That video has other parts to it and there are loads more on youtube about LDN.
It is not a miracle cure all but it has helped many people with varying diseases. It has helped me so much, before starting it I was bedridden more days than not, walked with a cane on the days I could get up and each day brought pain in a new place. The past few months after starting the LDN I can't say I am back to normal nor pain free but the pain levels are back to a mostly tollerable level and have allowed me to look after my family again.
I still have to be very careful with what I do and not push myself too much, oh and most importantly I have to remember to take the damm tablet lol.
The LDN may not work for everyone but it has helped me a lot.

And thanks for the compliment ragarding my kids, I have always thought they are beautiful but I am a little biased. lol
Trish
xx