Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group just diagnosed (finally)

Hi everyone.

Glad I've found this site. I've only just been diagnosed although it's clear I've has AS for many years. I know it can take longer for the x rays to give the tell tale signs in a woman but I've had symptoms for over 20 years.

I've just passed my 40th birthday but I started with back problems when I was about 16/17 and iritis when I was 30. When I was in my 20s I went through a really bad patch with my back that lasted several years when I couldn't work, hardly walk and developed what I thought at the time was a bad case of sciatica. I had x rays which showed wear and tear when I was about 26 but no diagnosis was made. How common is wear and tear in someone in their 20s without AS? Severe back pain continued into my early 30s but then improved / changed. I still have bad episodes of lower back pain but these don't last as long as they used to and mostly are not quite as severe. However, pain now usually is all in my hips, buttocks and legs. In my early 30s I also started getting severe pain in my neck / shoulders /upper back which at times meant I couldn't turn my head. For the last 10 years I've also had recurrent severe bouts of iritis sometimes affecting both eyes simultaneously. Still I went undiagnosed (on top of this my mum has ulcerative collitis) and most of my symptoms were put down to a motorcycle accident I had when I was 24. I also started having severe pains in my ribs which felt as if I was being squashed which lasted several days.

In the end I stopped going to the doctors with backache / neckache/ chestache as no cause was found. However in the last 18 months or so my performance at work has severly declined as a result of being excessively tired all the time. I also had an extremely bad bout of bilateral iritis which kept me off work several weeks and bad pains in the joints of my hands / wrists / ankles. No cause for the persistant tiredness could be found either and I started wondering if it was all just stress and depression. Finally, my opthalmologist suggested I should see a rheumatologist and I was diagnosed after x rays and blood tests. He said it was clear from the x rays that I had had AS for a very long time.

So sorry for rambling, but has anyone any suggestions for the tiredness? It is affecting my job badly (I am a teacher) and I fear I might end up losing it unless I sort it out soon.

Thanks

Hi alibat,Welcome to KA
Like you it took over 20 years to get my diagnoses so know how you felt. Ive been suffering for 48 years now. Fatigue Im afraid is a part of the AS Horrible as it is my pain is not too bad at the moment but my fatigue is bad Im falling asleep and feeling worn out all the time. I can under stand your problem but Dont know the answer I find if I keep moveing I am better perhaps you can move around the classroom more rather than sit or have one of these drinks like red bull high energy drinks other than that I dont know Im afraid.Perhaps the others can come up with some suggestions.

Kevin

Hi Alibat and welcome to KA.

You and I have travelled a very similar road. Like you, mine started in my teens, I had several years in my 20s (while I was in a music theatre programme) that were very bad, culminating in a six month bout of sciatica. I had iritis, I'm sure, when I was 18 that recurred for +/- 2 years when I was 28, during my first full blown flare. Wasn't diagnosed until I was 38, when damage showed on my x-rays.

I hear you on the fatigue, which is one of the symptoms of inflammatory arthritis. It drains us no end. I would make time during the day to stretch and do relaxation exercises. That might help somewhat. You also might want to get a sleep study done to see if there's anything other than AS impacting your sleep patterns.

Look into the no/low starch diet. It doesn't work for everyone, but enough people have had good results that it's worth giving a good try. I've found that wheat and gluten bearing grains are my worst culprits. Since virtually eliminating them from my diet, I've felt much better overall.

And look into something like yoga or pilates (take beginners classes, don't try doing DVDs of them). Pilates is my favourite, as if focusses my brain, strengthens my abs so they can do their job of supporting my spine properly, and acts as a meditation technique because of the focus required.

And keep coming here. The folk here are some of the best anywhere on our little blue planet.

Hugs,

Hi and welcome.

I realy think we need an automatic (finally) smilie to come up when yanyone types I've just been diagnosed. Sadly the word finally so often appears after that especialy with women.

Still I'm sorry it has takien so long for you to be diagnosed. May I ask what country you live?

Fatigue, well yes unfortunately that comes hand in hand with AS or so I have found.

Kat has given some great advice, try the NSD or at least LSD.
It has helped many here. It didnt help me with AS but it has worked for many.
Realy sorry to hear it is affecting your job.
May I ask what meds you are on?

Take care and again welcome.

Trish

Hi

Welcome to kickas

Usually with AS you have secondary conditions that complicate things. Being postive for the HLA 27B gene means that your pain is amplified. Usually women tend to suffer form fibromyalgia which causes the tiredness aching hurting etc which complicates treating the AS too. AS is unique to the sufferer depending on where the damage is to the spine. And AS can cause flares in any part of your body not ust the spine. You can have both periphal and sensory damage too.

The pain maybe causing you to have the dizziness passing out feeling but maybe you should have checked to see whether you have vasso depressor syncope. This is where the brain does not tell the heart that you are getting up from sitting bending over etc different enviromnetal conditions can affect you to stress etc medications etc. a stress test tilttable test could diagnose this.
It sounds like you are under alot of stress with work etc so this could be adding to the load you are already coping with.

Are you in england!
If you are you need to get the ball rollong as you know it can take quite a while to get into see somebody. goodluck you can send me a message anytime. I too was only in my teens (15) when i had symptoms.

Hi, alibat:




Almost impossible.



Eliminate dietary starches; getting out of inflammation is key not only in avoiding more iritis but also in reducing the terrible, debilitating fatigue that can accompany AS.

Hope that You will soon put Your AS in remission,
John

Thanks everyone for the warm welcome and advice. Yes, I am in the UK. At the moment I'm just on diclofenac. Been told that due to the expense I can only have the anti TNF drugs if I'm in a severe flare. Been given info on methotrexate and told it may help with peripheral pain but not keen on the side effects (anyone got experience of this).

Yes, my job is stressful and tiring at the best of times. But I'm finding I'm struggling to do all the marking, planning and other admin I need to do. I'm worried my collegues will think I'm not pulling my weight in the department.

At present, my eyes hurt (but I'm not in an active iritis flare at present) and my wrists and fingers are very stiff and painful. Back not too bad compared with past episodes but shoulders and neck tender. I've been asked to see my head to discuss any adjustments I need. As well as a suitable chair can anyone think of anything else?

Kevin, btw, how do you find riding your bike? I find I'm shattered after relatively short rides and my upper back and wrists can be agony. I love my bike though, been riding 20 years (other than in bad periods of back pain) and I'm determined to keep riding as long as possible. Other than avoiding sportsbikes (I ride a suzuki bandit) any other suggestions?

Thats a very old photo I am very old and decrepit now fused and bent over.But if I could own a Harley Id be riding it whatever the pain. I would suggest sitting upright which you are if riding a bandit and not riding for to long in one go the other thing would be get a trike and take the strain out of cornering.A lot of people dont realise how much strength you need to lay a bike over and pick it up again. Good on you for still riding I really wish I was I loved my bikes and the freedom and the odd bit of fun with the police. .

Kevin

though i've been frustrated with 11 years and counting of no definitive DX, i only have the tendon/joint issues, no uveitis. i'm just so surprised it has taken so long for you. just think this is inexcusable. however, with that said, i'm so glad you finally got a DX. and i guess if i were you, i'd push for the biologics, make it clear how bad things are, how much it all affects your functioning, fear of losing your job. most doctors seem to be able to relate to losing one's career when i ask them "how would you feel if you had to give up your career." i've just heard so many people here claim that the biologics have given them their lives back.

since my symptoms seem to be less obvious to them, they won't consider the biologics (yet) but i think LDN (low dose naltrexone) may be helping some. also, i take a muscle relaxant, zanaflex, at night before bed, and as needed. that drug has helped me a lot. NSAIDs do take away my inflammation fairly well, but i can't take them due to edema and gastritis. same goes for the cox 2 inhibitors (vioxx, celebrex) for me as well. as others have said, others have good results with a low starch or no starch diet, its worth a try, though i had no results with it. but i am on a low starch diet for my blood sugar and blood lipids and it helps my energy levels. some of my fatigue in the past was from insulin resistance / prediabetes. also a short walk every day helps my energy levels as it helps my blood sugar.

i too am a teacher, at a university. not sure what your work arrangements are. but i have my own office, so can take a "lunch break" or "dinner break" and turn it into a nap on a mat on my floor with the door closed if i have to, using ice or heat if i have to. or if things are really rough, pack up as soon as i can and do my grading in my recliner at home with the heating pad on, after a nice hot bath, with a nice relaxing cup of tea. all those things help keep the fatigue at bay.

a chair, well, everyone is different, but for me, the swopper chair, which is a bouncing stool on a spring that bounces, sways, but only when i do, otherwise feels very stable is the best chair for me. the constant movement and the ability to be able to tilt my pelvis in the proper alignment with my feet planted on the ground is the best for me. but its expensive. have wondered if the ball chair which costs a fraction of the price would be similar, its bouncy but i figured wouldn't allow me to sit in the proper posture. others may have other ideas. after about a year of trying it out, i liked the swopper chair i got at work (not with my money but work money) so much, i plopped down my own money for one at home.

what year do you teach, if you don't mind my asking?