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Anyone with Ankylosing Spondilitis?

  • Thread starter Thread starter slaxx
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slaxx

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Hi. Not sure if this should be here or in Off-topic, hope i got this right lol.

Does anyone here currently have AS? What's been your symptoms so far? Do you think it can be related to DM (because auto-immune disease)?

Asking because I'm recently having back pain, around middle to lower area of the back, mostly right side. It hurts in the morning, around 6-7am. The pain actually wakes me up. It's not as bad now as it was maybe 2mos ago, but is still there. It also only hurts during that time. I just found that sleeping with 2 pillows for my head helps.

For bg: i'm a T1, 29yrs old. Practice yoga 5-6x/week (which has helped too, it seems).

Would be great to hear from actual experience so i can decide whether to mention this to my doc or not. Thanks in advance~
 
Hi I don't have AS but that comes under my line of work so I know a bit about it! Yes it is autoimmune. I can tell you the symptoms you might get if you have it but if you think you do you need to go to your gp and talk to them? So you might find that the back pain is worse 1st thing, stiff and painful but easing off as you get going, responds well to anti inflammatory painkillers, you might have peripheral joint pain (hands, feet), you might find reaching up, bending and stretching sore and difficult,.difficult to stand up without using your arms, very fatigued, flu like symptoms, difficulty with chest expansion and so on. That's just an idea. Obviously there will be things I haven't mentioned but you should definitely go to your gp if you are worried! If he agrees with your suspicions he should order some blood tests and refer you to a rheumatologist. But there are many many causes of back pain, AS is a rare cause and most back pain is generally caused by wear and tear on the spine. Do hope that helps! Take care
 
Hi @Lally123
So far the back pain matches, stiff and painful but wearing off after a while of movement. I haven't tried painkillers yet because it does go away on its own.
Kinda hard to stand up straight right away after bowing/squatting down for a bit, back feels stiff (but also comes with age? But 29 lol.) I also prefer "flat" chairs (compared to those with a lower "butt area") because yes, back gets stiff from leaning in and downwards.
I tend to get muscle spasms easily.
Chest expansion hmm... sometimes i feel my breathing is shallow, but i'm not sure..
My next appointment with the doc is on January. If the pain persists i might bring it up. At least i have a bit of a guideline to check with for now. Thanks for sharing
 
You're welcome but if you don't get the answers you need do persist because there's been quite a bit of research done that shows that patients with AS have symptoms for a long time (up to 10 years) before they get diagnosed and like anything the earlier you have treatment the better. Hopefully it won't be that and will just settle down on it's own
 
I asked my old gp straight out one day.... have I got spondilitis? He said no. I've never asked again....but that was nearly 3yrs ago. I'm still in agony.
Seeing physio on tuesday, I might ask her!
Physio said it could be bludging discs but still no x-rays or anything. Numbnes in feet and scatica in my leg or arms. Thumb goes numb with pressure on a crutch I use to be able to walk without falling or none movement.
Only yesterday I was telling my legs to move but were very very slow in doing what I need them to do.
 
Mine gets worse in movement. More painful but no proper diagnosis of mine. May just be a bad back for me? I'm not sure.
I'm on 4hrly 100mg tramadol.
I've been diagnosed with asthma but swollen water tummy makes my back pain worse. Breathing goes bad with the pain.
 
Back pain is hard to diagnose and they don't often order x rays these days because they are just not that useful. To me the symptoms you describe do seem to be more.mechanical than inflammatory (which is spondylitis) and I think there must be nothing more miserable than having back pain every day. Painkillers and good physio will be key to improving things. Strengthening up your core with Pilates type exercise could also help? Keep an.eye on those.sciatica symptoms though and keep on at your gp if you don't feel you're getting the right help from him.
 
Hmm... yours could well be a tightened spinal cord... and could start from the neck? I'm guessing you have a bit of a stoop too, maybe stiff around the neck/shoulders? Ah but im just guessing, im no doctor and i have no background on this. Do mention to your physio, s/he might be more familiar with these things and be able to refer you to the right doctor. Hopefully we both get answers and/or comfort soon.
 
I hope your gp resolves your diagnosis and treatment quickly. Thank you for your support.
 
thankyou for your reassurance. My mum has spondilitis and since she was 30yrs old but only takes painkillers to be able to sleep off.
 
I don't have it, but have the high risk genetics for it (HLA-B27) so have done some reading about it. Current thinking is that it may be triggered by the bacterium Klebsiella pneumoniae. A low starch diet is often recommended to limit the possibilities of a klebsiella overgrowth (the same is also suspected in Crohn's Disease):

https://www.hindawi.com/journals/jir/2013/872632/
 
Hello @Indy51
I'm personally not aware of my genetics, though so far i don't think AS has ever been mentioned in the family. I think it's good that you know yours. Prevention is better than cure, always.
Currently my source of starch would be my daily bread intake for breakfast, and rice (rice is a staple here). Potatoes and such are rare. This is interesting because it hits on different diseases at the same time, of the same types. And to note that Endo always pushes for complex carbs vs simple carbs. Hmm.....
 
I had my genes tested for genealogical research but also ran the results through a genetics report. I don't have a family history of AS, though my mother was a chronic sufferer with psoriasis, which is one of the HLA-B27 autoimmune diseases.

In any event, I'm on LCHF and have been avoiding starch for the past 5-1/2 years to control my BG, even before learning about the genetic risk factors. I was quite relieved I'd already changed my diet when I found out!
 
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