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

Hello all,
I'm so very happy to have found this site! Also very happy to have seen there are others on here that are closer to me!
Have only read such a small portion, and am both very glad to have found you all, and yet also can't believe the suffering that goes on, and how long so many have searched for answers!

I admit I have some hope now that one day I too will find the answers as to why I have had so much pain.

I apologize in advance, but as I've seen in here,my story too may be long.

It all started back in Dec. 09. It started out as a really bad pain low in my tailbone area.For a few weeks it stayed day in and out just there. I walked hunched as it was difficult, and had a difficult time sitting or laying.Gradually it moved to the 'dimple' on my right low back and my pelvis in the front and back. The pain was so excrutiating that I couldn't walk well,laying down was next to impossible and sleeping much the same. I would wake up in the early am around 1 or 2 with what felt like my whole entire pelvis on white hot fire. Trying to move to get out of bed was almost impossible and I had to brace myself because I had to change positions, but I knew how much it would hurt.I took advil, tylenol, and just about anything I thought would or could help..and it didn't even touch the pain. Both my arms and hands would go totally numb just sitting on the couch or laying down. It was such a bad ache. I couldn't understand what the heck was going on. I couldn't lift my legs to get into the tub to shower, or dry myself well, couldnt even reach many parts of my body to wash well because the shoulders hurt so much, and much to my dismay it seems that they are somehow connected to where it hurts low in my hip/back! lol...

My shoulders hurt, mostly my right side.. always seems to be worse on my right side, and at some points, I couldn't lift up my arm very far to the side at all.
During this time I visited my family doc almost every other week. He did bloodwork but didn't tell me the results, he gave me various anti inflammatories none of which helped the pain at all... He had no idea what was going on and eventually put me on high doses of prednisone. He told me that if it worked that it told him that it was auto immune and that wasn't good. At this point I had decided that there was no way that I could live like this. I could barely function at home or at work.
Guess what? It worked.. I'm sure some or many of you have had the feeling, but it was better than christmas! I still had pain, but it was different and the Intense burning in my pelvis went away during the night and I could now at least lay down. Not comfortably, but I could.

I was sent to a Rheumy in Newmarket.... He saw me two times..He gave me high doses of an anti inflammatory that helped a bit.. ran bloodwork that didn't check for the gene I hear you speak of, and a T1 and t2 weighted mri was done. He barely looked at the screen and dismissed me. I was told I have moderate facet joint deterioration from my L 2 to L5, but that it is just something I'm going to have to learn to live with!



I came online looking for answers as I don't seem to get any no matter which way I look!
I'm a single, working mom of 6 children. All of them still live with me. The work I do is physical and I love it, but this pain has kept me from being able to do my job well, and as well has as you can imagine had an impact on my entire life. I can no longer take my children rollerblading, or for a long walk to the park. Most of the day I limp around with my back sort of hunched and my pelvis tilted as that seems to feel better than standing up straight? Getting into the car is painful... I feel like I need to go slow and wait until things crunch into a better position then sit down..Lifting my legs is tough as it seems that even though its the right side that hurts so much, it too is connected to my left side as well as my arms for lifting things up front and high. The pain is horrible in the morning but eases up as the day goes on and I think in part due to the pain meds that he finally gave me.(tho he limits them to 4 a day!) If I sit for a period or once I slow down in the eve I seem to hurt more.

I look back into my life to try and compare illnesses or pains that I've had with the things I see that AS can cause and there are so many similarities.
As a teen I had excrutiatingly painful knees..Often ending up in tears, normally the right more than the left.
I also had severe TMJ and had the right side operated on as it was worst than the left.
During this time I also had bouts with pain on the bottom of my heel, again normally the right. I thought perhaps it was just that I had banged it and didnt remember. It felt as if I had a piece of bone broken off under my heel as I tried to step on it.
I have gone into my gp in the last few years complaining of blurry eyes that came on and left for no reason. It lasted for days or weeks. Eventually one day sitting with the children I got what looked like black fluff in one eye. It eventually turned to a line of black dots that looked like oil floating on water...they are still around but mostly when I am lookiing at lighter backgrounds. I don't notice them as much anymore.
I also have gone to my gp with terrible pain in the front of my sternum where it met my ribs. I was told it was probably arthritis, it happens and deal with it. (I was only in my 30's?)

I'm wondering if any of thie could be AS? At first the rheumy mentioned it, but after the mri came back saying I didnt have anything wrong with my SI joint, where all the pain was coming from, I suppose he changed his mind?
I forgot to mentiong that I have also been "double jointed" all my life. So when the woman at the rhuemy did a test to see how far I could bend etc she probably thought I was fine..but little did she know I have been super stretchy all my life! All my joints are affected and as a young person my hips would pop out at times when I went to sit down, and my shoulders could be moved far out of joint easily.

I'm so very sorry this is so long.. I guess I've just ran out of options. I feel so helpless because it seems that even my family doc looks at me like Im just in for the pain meds... but its affecting my entire life and the lives of my children who only have me to rely on.
I've gone from being physically like a 30 year old, to moving like I'm in my 70's and I don't know what to do.

*sighs*.... I'd really appreciate anything that anyone has to offer in regards to next steps, or advice.

I'm sorry to have had to meet you all in here, but so very glad that I found you all in any case.

Thanks for listening,
LuvlySerenity7

Well glad you found this place lots of friendly advice and good people. sounds to me you've got As but i'm not a doctor!! it did take most of us awhile to get dx'd. Welcome

Thank you so very much sooner. It does seem like I've found the right place to be... from what I've read the people are very caring and can identify with each other.

I sure can ramble though... just looked at the post! lol So sorry to everyone who reads..
Tracy

Hello there,

Glad you took the time to post and hopefully you can find some answers for your pain.

Cannot say it is AS, but many here have to search years for diagnosis. For women it may be more difficult as it is not always the classic symptoms that present themselves such as is more the norm with med (first low back and SI joints).

The classic AS symptoms doctors will first diagnosis AS with are some of the following:
- family history
- Low back pain worse in the morning, gets better with day
- SI joint or low back fusion - xray evidence

Women tend to have more pheripherial joint pain first

Hope you find answers.

Tim

Hi Serenity,
Welcome. You and I sound very much alike with our 'pains'. My A.S. started in my knees in my teens/early 20s. I am also hyperflexible, there is a condition call Hyperflexibility or Hypermobility Syndrome, here's a definiton "Excessive flexibility, either of one or a number of joints, resulting in joint laxity and an increased risk of dislocations." Next time you see the rheumy or rn tell them about the hypermobility, it can make a small difference. Your feet hurt & it feels like a piece of broken bone? Have your doctor do an xray of your feet, you may have a bone spur, this is one indicator of ankylosing spondylitis. I have one, and it was one of the reasons my doc diagnosed me with a.s. I do NOT have the HLA-B27 gene, but that doesnt mean you dont have a.s. There is a percentage of non HLA-ers that still have a.s.

I also started out when the pain really got really bad walking hunched over, it hurts too much to stand up straight right? I found a solution, get a cane from the drug store. This forces you to straighten your back without putting strain on it. It also will give you more stability. Depending on the store you go to, sometimes they have them with neat designs on them, your kids could help you pick it out, it can be a 'family' thing. In a way it will also help them to help you. You dont want to burden them, but they can get your cane for you when you need it. I dont know how old your kids are but at least a couple seem younger? The cane does make a HUGE difference.

Umm, what else... I wake up several times a night after turning onto my back. I lay there in so much pain trying to move onto my side. I have to grab a handful of sheet/mattress to pull myself into a sitting position so I can turn over onto my side. End up rolling onto my back again later and have to repeat the process several times.. yeah I could put something behind my back to stop the roll but I cant stay in one position too long. I also have sciatic pain so when that kicks in.. wheewww. no fun!

Ok, I think that covers most of it. So, no, you are not alone in this. I am fairly new to this site as well, but already I feel at home, with family.

Anytime you have questions someone will have some kind of answer or correlation.

Again welcome,
Kirsty

Thank you as well Tim,

I'd have to say the first with me was low back and SI joint right side.. It does get better as I move, and as for family history I believe my mother has arthritis and I know she has been diagnosed with Lupus. I tend to wonder because her physical ailments are so similar to my own whether she was properly diagnosed. Her symptoms seem in my eyes to point to AS.. but who am I to say!? lol
The mri apparently didn't find anything in the right si joint, but no one seems to tell me much. I read that I have a cyst somewhere in or on my spine as the doc was holding the paper, and have the deterioration not only in L 2 to L5, but apparently up in my c area? I'm just sort of feeling in the dark as the docs don't really say much to me.
Thanks so much for your response, much appreciated!

Serenity,
You know you can ask for copies of all your lab work and radiology reports. I finally got a copy of mine and found I had been tested for the HLA-B27 and that is was negative. My rheumy didnt tell me this. This way when you go to your doctors appointments you can ask what specific test results indicate.

It took years for my diagnosis, but maybe you'll be luckier,

Kirsty

Hi there and welcome.

As I read your post I thought this could be a post from myself.
Most of your symptoms are so much like my own it's not funny.

I started with knee problems when I was 10 dx with osgood schlatters. My hips would pop in and out and had feet problems. My lower back started to play up in my late teens ever since things have gone down hill. Shoulders, sternum most joints affected. My spine is a mess with much degeneration curvatures, stenosis and lesthesis. CT of SI's only shows mild changes. I also have cysts in a number of places including lower back.

However we differ in that I have been dx with AS I am also HLA B27 +.

I am no expert but for me your problems do sound very much like they point towards AS.
Don't give up the fight, keep pushing your docs for an answer. It took me well over 10yrs to be diagnosed.
Luckily I have found a lot of relief in LDN (low dose naltrexone) Although I did forget to take it a few nioghts and I am realy paying for it today.
Keep researching and reading here. I may also be of benefit to try the Low starch or no starch diet. Details can be found on this site. It didn't work for me but many others have found it great.

Again welcome and all the very best. Hope you find some answers soon.

Trish

LuvelySerenty7 - as someone here the other day said: if it sounds like a duck. walks like a duck and looks like a duck, then... It sure does sound *classic AS. As Tim said, women tend to present slightly differently to men, women also can take longer to get a DX. BUT, get back to your doctor and ask for copies of ALL your blood tests and also get copies of your rheumy reports - good to have copies of *everything in your own habds, and, you have a Right to have copies, so don't be put off.

Now, you said Newmarket. Is that Newmarket UK? In which case there are good rheumies in Cambridge - in fact, one is on the NASS committee, NASS, National Ankylosing Spondylitis Society (UK Association). Will haul out his name and post it here for you. Then, get theee to to a GOOD rheumy, that is crucial, as you should be being looked after. This is an appalling situation, untenable. Gotta fight for 'yourself' gal, and medics 'can' be a right handfull to deal with...!!

There is also a very good rheumy in Leicester, and another one in Bath, in fact, two in Bath. But these may be a tad distant for you to get to. As for DX, you do have to push for this, mine took several years, and the 'norm' seems to be...dada...8 - 10 years! Crazy situation. That is why one really does need to be pro-active, search for answers, ask questions, read up on all your symptoms etc etc.

(Everything you mentioned is classic AS, including the feet - planta faciitis with heel spur! Shouldedrs - another classic. Lower back, pain on turning over, classic, classic, classic. Hips. Knees. And all the rest. And, BTW you do NOT have to be HLA-B27 positive, many people with AS are B27 negative.)

But tell ya, your duck surely does *quack!

Go well - and take care hon - battling with all this and coping with six children and single handed at that...strewth, hold my hat off to ya.

Molly C (France)
Keeping on Keeping on

P.S. Eye problems are ALSO a *classic problem with AS and your doctor 'should' have got you to an ophthomologist pdq. Suggest that you request an appointment with an ophtho, ensure beforehand that they *are AS aware, have got a slit lamp (not 'always' available at UK hospitals...been there and had it happen to me!) and take it from there. GGGGRrrrrrrr

LuvelySerenty7

NASS information:-

http://www.nass.co.uk/public/about_as.htm

Lots of *information AND links for you to chase up on.

About AS
Ankylosing spondylitis (AS) is a form of arthritis. It mainly affects the lower back. Other joints and other parts of the body are sometimes affected.

The links below answer the questions people with AS most frequently ask and contain practical advice on things that will help you manage the condition more easily:

•AS Questions

•AS Normal Life
•AS Advice

•Residential course for AS patients in Bath
•AS Support
•AS Exercises
•The Spine
•Definition of AS
•Bath Indices (a set of measurements used by rheumatology professionals to assess disease activity in patients)
•Fact Sheets - A new resource for people with AS covering exercise, lifestyle and medical issues. Click on the title below to access the current fact sheets:

◦Anaesthesia & AS
◦Blue Badge Parking Scheme
◦Driver Vehicle Licensing Authority (DVLA)
◦Government Work Schemes & Programmes
◦Pilates
◦Tai Chi
◦TENS Machines
◦Uveitis (also known as Iritis) for patients

•Patient Guides
◦A Guide to Benefits
◦A Guide to Disability Living Allowance (DLA)
•Personal Experiences - excerpts from AS News
◦Joint Replacement Surgery
◦AS Residential Course at the Royal National Hospital for Rheumatic Disease, Bath

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And I bet that rheumy you saw didn't put you through the BASDA indices...