Spondyloarthritis

[Mrsb07]

My husband has just been diagnosed with Spondyloararthritis where can we find more information about it and how do we find out how bad it can get I want to know so I know what I'm dealing with and can prepare for the future

[ruth_p]

Try the NRAS or Arthritis Research websites. Other than that I would ask your husband’s rheumatologist for more information. 😊

[helixhelix]

Yes, as Ruth-p says stick to the reputable websites. Spondyloarthritis is one of the inflammatory arthritis group of diseases, so much of the general information about inflammatory arthritis as a whole will apply to your husband. But there are some specific characteristics which these useful sites discuss.

As for how bad it will get, that is impossible to predict for any individual. I also think that it would be better if you could start off thinking that together you are going to work to have a totally normal life, rather than anticipating the worst. For the majority of people the modern drugs, plus looking after yourself with exercise and healthy diet, mean that you can live normally and mainly pain free.

Forum's such as this paint a more depressing picture as they are unbalanced. It's natural that those with the greatest problems need more support, so post more. Those of us who are fine rarely post as what would we say? Having another good day? I have RA, not spondyloarthritis, but am now 95% normal and have been in remissison more or less all the time for the last 5 years.. Aim for that.

[Lrcjvl]

spondylitis.org

[Rahelp]

I have RA Fibromyalgia spondyloarthritis when my back flares up i can do very little but for the most part manage. I visit an osteopath regularly who helps enormously and take my med for the RA. With care your hubby will be able to manage.

[Kai--]

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Sorry 🙏, Mrsb07, instead of 'how bad it can get' info, here's 'how good it can get' info ☺️ :

😊 Any 'Ankylosing Spondylitis'-ers (AS)?: healthunlocked.com/ra-warri...

😊 ankylosing spondylitis and how to manage it: healthunlocked.com/nras/pos...

😊 Ankylosing Spondylitis (AS): healthunlocked.com/nras/pos...

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Wishing you & your beloved the very best, Mrsb07. 🙏 🍀 🌺 🌞

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[oldtimer]

I know that there is a local group here where I live that provide weekly sessions in the hydrotherapy pool for their members. So I would join the ankylosing spondylitis society! And, of course, they will have lots of usual advice. And I would second the Arthritis Research Society suggestion for more general advice.

Do make sure that you get balanced advice and don't listen to the scare stories or the hype about magic cures!

[Runrig01]

Spondylarthritis is an umbrella term that covers inflammatory arthritis that involves the spine. NASS is the charity supporting spondylarthropathies. There is also a good uk Facebook group which offers good support. I have Ankylosing Spondylitis, happy to help or provide info if needed

[Amy65]

U are the 1st woman I have heard of that has as I also have it it also affects my eyes uvittis do u have this x

[kerryhannah in reply to Amy65]

I have it too! Diagnosed at 31. Started using Benepali about 4 months ago and it's changed my life! I am a drama teacher so am very active. Without Benepali I'm in crippling pain and get stuck moving, sitting, sleeping etc. With Benepali it's like I don't even have the AS! I don't think it's all doom and gloom but perhaps I'm being naive? Just think how amazing medicine is now and how great it could get in the future too!

[Runrig01 in reply to Amy65]

No don’t have uveitis, fingers crossed. Diagnosed 1yr ago had symptoms 20+ yrs. Have fusion if SI joints, and ribs are fusing. Their is an international Facebook page dedicated to AS in women.

[Mrsb07]

Thank you everyone for your comments but I didn't need the links for different websites because my husband has been misdiagnosed it's not Spondyloararthritis the doctors don't know what it is so back to the drawing board for is we have an idea as to what it could be but every time you mentioned it you get shot down

[Kai-- in reply to Mrsb07]

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There's much overlap amongst the various rainbow 🌈 flavours of Autoimmune Disease, Mrsb07.

Therefore, kindly bear in mind, much of the info remains useful. 👍

Consider avoiding "throwing the baby out with the bath water." 👶 🛁

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🙏 🍀 🌺 🌞

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[Mrsb07 in reply to Kai--]

No we have not given up we are still fighting for a diagnosis but a proper one as my husband has been misdiagnosed 3 times already we just want answers now

[Kai-- in reply to Mrsb07]

Understood, Mrsb07. 😌 🙏 Of course you've not given up. 👍👍

Bit of supplemental info on 'diagnosing/ labeling' that may put some of the 3 misdiagnosis into some perspective/ context: healthunlocked.com/nras/pos...

Yes, the need for correct answers is very much understood. 🙏 🍀 🌺 🌞

[Mrsb07 in reply to Kai--]

Thank you my husband is greatly appreciative of all the reply's he is feeling a little better knowing that there is other people out there with the Same problem