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Autoimmune disease

Possible ankylosing spondylitis - hand hold anyone?

12 replies

JalapenoCheeseOnToast · 17/04/2021 21:01

Just as the title says really, I am seeing a private rheumatologist next Tuesday but in the meantime I'm so depressed its horrible.

I'm just coming out of the other side of a bad moment (couldn't lift my leg off the ground, crutches since Sunday 11th although down to 1 crutch now), the pain is unreal and all I want to do is sleep. I'm taking naproxen and have weaned off of codeine and diazepam over the week.

Had a similar episode in November and was tests for HLA-B27 which was negative. My rheumatoid factor and anti CCP bloods were normal. So I proceeded down the "I'm injured" route and saw an osteopath, podiatrist and mobility rehab guy to help me. All seemed well until mid March when I started deteriorating again and now my Osteopath thinks he may have mis-diagnosed me and has referred me for Axial Spondyloarthritis/AS investigation.

I just need to hear some positive stories. I haven't been able to go to work (primary TA), look after my children or really anything all week. DH and I keep fighting and I'm worried we won't get through this. I'm a keen runner who aspired for ultra-marathon and I just feel like my whole life is being swept away from me - I have visions of being unable to walk every few months like I have been now, eventually wheelchair bound and in constant pain and I just want to be off this planet. Dramatic, I know, but I need to say it somewhere.

Does anyone have any experiences of this? I'm so frightened and miserable.

OP posts:
felulageller · 17/04/2021 21:07

I've never been diagnosed but think I have AS.

It took years of building up from slow half-hour walks to be able to jog again.

I also have to do regular gentle yoga.

I suppose I've got used to not having the mobility most take for granted.

I can't do most chores eg vacuuming, laundry, dishes, bedmaking so you may need to plan for a cleaner long term if you don't have a DP.

But I've been fine to work in office based roles so it shouldn't stop all hopes of employment.

Snog · 17/04/2021 21:18

My friend has found that changing diet to avoid processed foods has really helped.

Loushome · 18/04/2021 18:29

I was confirmed as AS 6 years ago, having had symptoms for 16 years before that.

Have a look at NASS - there are literally hundreds of stories on there from people like you who do sponsor led marathons and the like & join the FB group (Ankylosing Spondylitis Support Group UK.

With a good diet, good rheumatologist, the right pain management and good communication with the right healthcare professionals, your quality of life should be sustainable for as long as possible.

I’m on a hell of a lot of meds, need assistance, but attempt daily physio and will return to hydrotherapy when it re-opens. I deteriorated because it took so damn long for a confirmed diagnosis and in that time I’re in a better position because you almost know what you’re up against.

JalapenoCheeseOnToast · 18/04/2021 19:09

Thank you all, I was having a "bad moment" last night (as I keep referring to them!)

I know I'm lucky to hopefully get a diagnosis quickly - I am going privately as the NHS is unwilling to see me until plenty more is ruled out and even then a referral to a rheumatologist will be 12-24 months and I just can't wait that long.

Another port of call is SIJ dysfunction and, to be honest, both diagnoses sound pretty difficult but I'm hoping with an answer I might start to relax a little.

I'll take a look at an anti-inflammatory diet as well - willing to try anything! I've been taking naproxen to calm down whatever this has been and perhaps its working and perhaps not - I am feeling a bit more like myself today (so 7 days on) but still slow, tired physically and very wary. The naproxen makes me feel so sick though!

Can I ask - anyone who has AS or suspects - once you started regular treatment, did your flares die down in severity? I guess that is the crux of my worry, that my flares (if that is what they are) will always be as severe as finding myself completely unable to walk properly for a week or more at a time. With young children (DS 9 and DD 18 months), it is just horrendous to manage and the cocktail of tablets, along with the pain, leave me unable to look after them and it's just unmanageable.

At the very least I have found comfort in lying down this time so have taken regular breaks to lie down and this has eased off when my back and hips feel like they are giving way!

I'm feeling a bit more positive this afternoon/evening again but I'm sure I'll have a few more wobbles along the way.

OP posts:
Loushome · 19/04/2021 13:14

With regard to Naproxen making you feel sick, would your GP provide a stomach liner such as Omeprazole to go alongside it?

Everyone is different re: flares. You’ll see this on the FB group, there’s no set answer.

Talia sums it up perfectly in these two separate links....

I related to the bit about the cot:

Loushome · 19/04/2021 13:19

You do need to remember that everyone is different. It’s Whilst it is a degenerative disease, my 75 year old Dad is able to walk a lot further and a lot faster then me. I am so envious of him! I also have a lot more conditions linked to AS than he does. He has NONE whereas I have at least another 6.
I take 8 or 9 other medications every day (18 tablets) whereas he only takes Naproxen once a day.

I do understand your concerns and in some ways it’s like a grief, a bereavement for an unknown future but as I said before, you’re a step ahead because you know what you’re up against xx

JalapenoCheeseOnToast · 19/04/2021 13:31

Thanks @Loushome, reading that article really hit me and I feel luckier than ever now that I have an appointment within a year of visible symptoms (despite having to go privately for it).

I can't deny I am still hopeful that it might be something else but I know I'll come to terms with whatever the diagnosis is at some point - I just want to know now. I've got a lot of information ready for tomorrow's appointment, I have no idea what to expect but better to be prepared!

OP posts:
JalapenoCheeseOnToast · 19/04/2021 13:34

Also I am taking Omeprazole already but I'm not a fantastic tablet taker so think it all just upsets my body (as well as being stressed etc as well!)

OP posts:
snowqu33n · 19/04/2021 23:39

From what I have heard, Biologics are the best for AS. Can return you to almost normal. But every treatment has side effects or safety issues long term so you need a proper diagnosis and a proper assessment for suitability for treatment. Diet, like any other home remedy, has limited effect for most people and might make it worse in terms of pain management and getting on with life.

JalapenoCheeseOnToast · 20/04/2021 07:01

@snowqu33b that is my understanding as well but I'll have to explore that if/when the time comes - I'm very reluctant to be taking naproxen long term.

I have my appt today so will see what the rheumatologist says - I know a diagnosis is still a way off but at least the ball will be rolling :)

OP posts:
Loushome · 20/04/2021 15:14


What’s ‘normal’ for one person is not ‘normal’ for another.
Normal is a way of life appropriate and according to that one person only.

Look at my previous post to see the differences between me and my Dad.

JalapenoCheeseOnToast · 20/04/2021 19:12

Just had my appt, the doctor isn't sure what is wrong with me so he has ordered more bloods and is sending me for scans ASAP - hopefully I'll be back with him within 3 weeks and have a better idea of what is going on :)

OP posts:
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