Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hi! from newbie

Hey everyone!

I was diagnosed with AS a few months ago, which has been a relief to some extent as it has finally put a name to the aches and pains I have endured since my late teens.

By way of background, I am 33 yrs old and have had severe SI flare ups on both sides since the age of 19 (the resulting spasm of the piriformis muscle and pinching of the sciatic nerve was debilitating). However, I have managed to ‘control’ the flare ups over the last five years through stretching and taking anti-inflammatory meds which has, thankfully, allowed me to resume playing some sports (mainly tennis).

Prior to the diagnosis, I had a MRI scan which showed inflammation scarring in both SI joints although neither are yet fused. I have not been advised to go on to the biological meds but have been put me on a range of stretching exercises for my back to improve flexibility, which will be monitored every few months.

The AS diagnosis has helped me to explain pains in my right Achilles heel and big toe in my right foot which have occurred for no apparent reason. In addition, I have also suffered from fatigue without reason. From searching this site, I believe all are typical target areas for AS sufferers.

I have generally had no back pains although about two months ago I started to get pain in this area. The back pain seems to be located on the ribs as opposed to being near the spine itself and is fine during the day (no probs playing sports either) but wakes me up at around 4/5am every morning (anti-inflammatory meds are having practically no effect) . My physio has stated that it is likely to be inflammation of the tendons at the end of the ribs. I’m not sure what is the lesser evil i.e. back pain which wakes me up at night or SI joint pain which cripples me during the day!

I have a few questions (to start of with!) which I was hoping someone could help answer:

- From reading about AS, I’m worried about my ribs fusing. Can someone tell me how long it typically takes for the bones to fuse i.e. is it years as opposed to months?

- If any of you have experienced similar back pain in the ribcage area, is there anything you have done/used to help being able to sleep at night?

- I’m not sure if it is a coincidence but my back pain seems to have occurred around the same time as I started playing golf – can playing a new sport typically trigger an inflammatory AS response? It seems to be a bizarre theory but I thought I would throw it out there anyway!

- Is it generally expected that AS is likely to get progressively worse as one gets older or is it difficult to say? I only ask because my pain has remained relatively isolated to my SI joints over the last 15 or so years and wondered whether I'd seen the worst of it (probably wishful thinking...!)

Apologies for the long post (I think part of it is finally being able to discuss it with ‘someone’ who can empathise)

Thanks

Harry

hey dude, I just got diagnosed with the AS last week...Good times.

But from what I know, If AS is left untreated that is when the fusion progresses up you back. If you're taking the anti-inflammatories that is going to stop the progression. Haha, you're probably "no duuh"

Ive started taking the celebrex for 3 days and Im already sleeping better. Before that I was taking the Ultram which just helps you sleep and "hides" the pain. I do the P90X and there is a stretch program on there that i did before I went to bed and it helped. Before, I used to wake up 3am every morning cause of the pain. it sucks, so I would stretch and use a heating pad and eventually fall back to sleep.

The more exercise that you do, the better off you are! and diet is very important too. stay away from the starches n pasta. salmon and chicken are good for you. Along with nuts, fruit and I heard ginger works very well...

I hope this helped at least a tad.

Good times indeed!

Whilst my SI joint pain thankfully seems to have subsided for the moment, different parts of my body are starting to tag-team me! - Achilles heel which made limp for a couple of months then sausage digit (great description) big toe which seems to have been my pressie from Santa last Christmas and to top it off the back pain which wakes up at 4am (and as I love my lie-in, this one really felt like a sucker punch!). Forgot to mention the psoriasis on my scalp which has been bugging me for years...

I have actually tried the (anti-yeast) diet for a few weeks and didnt really notice any marked difference.

Anyway, thanks for your post and good luck! Will also run those meds past my doc..


Cheers

Harry

Hello, and welcome to KA.

You might check out this article on Psoriatic Arthritis: EMedicine

Sausage digits don't happen too frequently in patients with AS, but they do in patients with Psoriatic or Undifferentiated Spondy. That and the facts that you have Psoriasis and the Achilles involvement is prevalent made me look into it. Also, rib pain happens often with PsA, as does SI involvement. Psoriatic Arthritis (PsA) is one of the Spondies, by the way, and definitely related to AS, so they do get mistaken for one another.

My sweetie has Psoriatic. He has Psoriasis, sausage digits with nail involvement, his wrists are badly affected and one is almost fused, and his Achilles are really bad (horrible rupture of the left one 2 years ago that took ages for him to recover from). He has some back pain, but not like mine with AS. About 20 years ago a doctor diagnosed him with AS, but he was never treated for it. It was only a couple of years ago that he was definitively diagnosed with Psoriatic and given proper treatment. He's doing much better now, although his wrists poop out on him very easily.

When it comes to your ribs fusing, you need to start doing breathing exercises. The lung expansion will help combat the ribs fusing. Take a long towel and wrap it around your torso, just at the diaghram. Take the left end in the right hand and the right end in the left hand and tighten the towel around yourself. Inhale as deeply as you can, holding the towel tightly, then as you exhale, tighten the towel further. This will provide resistance and work the muscles in that area. Do this ten times every day.

I found that I didn't get a good night's sleep until I got a memory foam mattress, but we're all different. The same goes for prognosis. We are all different and our bodies respond differently to various treatments, as well as to the disease. Learn to listen to your body and the messages it is sending you. Do your research to learn about various treatment options and make your decisions from the point of view of knowledge, not fear. The more you understand, the more effectively you can work with your healthcare team.

I'm not saying you actually do have Psoriatic, by the way. The longer I live with AS, the more I realize that it is completely different in every patient. That said, it's worth looking into to ensure you get the best treatment possible for your condition. My sweetie was put on Enbrel for his Psoriatic and it not only helped his pain levels and wrists, but his Psoriasis cleared up and so did the sausage digits, as did his toenails. I'm on Enbrel for my AS and it helps, not as much as Remicade did but enough that it's definitely worth taking. The treatments are often similar among the Spondies, but certain meds are better for one than for another.

Just a few thoughts for you to gnaw on.

Hugs,

Just wanted to saY WELCOME!

Hi, Harry:

I have AS and sausage toes and did have occasional bouts of psoriasis: AS is THE "seronegative psoriatic spondyloarthropy."


In men, fusion usually progresses more rapidly than in women. Beyond that, nobody knows--AS is highly individualistic. All I can say with any certainty is that I had the worst case conditions (NSAIDs plus vegetarian diet) and my ribcage took nearly 15 years to fuse and I was only able to gain back a portion of my chest expansion, once on the correct anti-AS regimen. Well before this, once I started NSAIDs my kyphosis began and got very severe after only about four years. Neck was completely locked within eight years.




Yes, eliminate dietary starches.



Yes, as different from normal muscles are used the activity will often move to those sites where cellular turnover rates are highest--when cells are most vulnerable to attack.



There is no set rule.
And the progression of Your disease is entirely up to You and Your lifestyle choices.

HEALTH,
John

Thanks for the responses, very useful.

Cheers

Harry

John

Quick question on your reply - what do you mean by saying you had "worst case conditions (NSAIDs and a vegetarian diet)"?

I probably eat quite a lot of vegeterian food and I'm also on NSAIDs but didnt realise this could be bad for me...

Thanks

Harry

do your own research on the low/no starch diet,lots of folk on here will tell you it works great(for them)and just as many will tell you it is of no use whatsoever

Hi Harry

I am not yet diagnosed. My GP thinks that I have AS and I think I might have AS or one of the related conditions.

I like the low starch diet and believe it is helping me. I have my own way of doing it, which is a bit stricter that how Carol Sinclair promotes it. I have less fructose, lactose and sucrose, plus I avoid processed foods.

But I never critisize Carols diet because I do think it is well thought out and because she does allow a lot of different kinds of foods I think a lot of people find her diet fairly easy to follow.

I think the best thing to do regarding the diet is follow it as closely as you can and in the mean time simply keep asking folk here why they do what they do. Over time you will gather a lot of good ideas and you will, with a little trial and error, be able to identify what works best for you

Love Joanne