NRAS
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ankylosing spondylitis and how to manage it

I have been diagonised with AS and it seems my pain is getting worse..i feed on pain killers and i heard those are not good for ur liver on the long run........ TBH i have not been consistent with benapali...i just want to know how u guys manage ur pain....my neck pain is terrible....i really need help pls cos it makes me suicidal sometimes..my wife just found out about this as i do not feel comfortable talking about my condition to anyone.

I just want someone going thru d same pain to reach out to me and let me know how they manage their pain,,

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I'm going to put more links in a separate post but as a matter of some urgency given the way that you feel, I urge you to call either of these Helplines.

NRAS nras.org.uk/helpline

By telephone (free from landlines):

0800 298 7650 (Monday - Friday, 9.30am - 4.30pm)

By email:

helpline@nras.org.uk

Pain Concern's Helpline.

painconcern.org.uk They may well understand and have advice.

Phone: 0300 123 0789

The Pain Concern Helpline operates

Monday to Friday: 10-12 and 14-16

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thank you very much

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I was born with multiple anomalies in the neck and a scoliosis there so have episodes where the pain is paralysing and accompanied by a debilitating nausea and a frustrating amount of restriction in how much I can use my shoulders and hands. A consultant I saw recently suspects that some of the current pain there is attributable to psoriatic arthritis rather than the usual suspect (so to speak).

I don't respond well to pain management medications (the genetic condition responsible for the wonkiness in the neck also affects other organs such as the kidneys). I know that not everyone responds as well to physical therapy as I do but I'm in the fortunate position where persisting with my mobility routine and the extensive use of sauna helps me to get through the flare-ups until I can revert back to my normality.

There are various pain management people who say that successful management of chronic pain usually involves many strands and it all depends on what works for the individual. Some use medication to reduce (say) 20% of the pain. Maybe the DMARDs reduce 10-15%. Perhaps TENS or sauna can help with another 10-15%. Regular cycles of ice or heat (depending on body part and what works for you) - another 10%. Headspace or meditation practice, another 10% and so on.

Has your GP made a referral to a Pain Clinic for you?

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I'm shamelessly quoting some of Beverley-NRAS' links here:

escape-pain.org

britishpainsociety.org/stat...

arthritisresearchuk.org/sho...

arthritiscare.org.uk/living...

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As a separate comment, a number of people on the Pain Concern forum have found some benefit from CBD products (I have no knowledge of these and only know that the source and quality is very important):

healthunlocked.com/search/c...

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Feel for you. Long term chronic pain is hellish, and soul destroying.

Pain killers don't do anything for me, other than maybe take tge edge off. I had awful neck pain a couple of weeks ago (alongside other pain). The pain and stiffness in my neck actually made me wake up with a banging headache so bad I'd throw up. Physio showed ne some simple exercises that eased the pain considerably.

Have you been referred to physio? It does hurt, but helps. Also swimming, and saunas help (as someone else mentioned). What about a review of meds?

When in real pain I know exercise is the last thing you want to do, but swimming in particular lifts the mood and is easy on the joints.

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Kindly consider this supplemental information, sleekreek, as well as the experience of ASers Cherie Allardice & Katie on managing AS & pain 🙏 😌 :

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

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

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Reversing Ankylosing Spondylitis . . . Cherie Shares Her Journey:

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Cherie's Facebook: Ankylosing Spondylitis Recovery: facebook.com/ankylosingspon...

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Katie Gets Off Methotrexate After 11 Years Of Inflammatory Arthritis / Ankylosing Spondylitis::

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Hang tight, hang tight . . . ✊️✊️ . . . 😌

Abundant realistic hope, sleekreek. 🤗 👍

Wishing your the very best, dear man. 🙏 🍀 🌺 🌞

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Kind regards, 😌

Kai

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And, when the going gets tough, should the 'thing that can't be spoken' surfaces, have a look see: Suicide -- Career & Otherwise: healthunlocked.com/nras/pos...

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Documentary "Of Hearts and Minds" may strike a particular chord: topdocumentaryfilms.com/of-... 🙏 ❤️ 🤔 ⚖️ 😌

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Just to add in that the National Ankylosing Spondylitis Society has its own Helpline that might be useful: nass.co.uk/nass/en/get-in-t...

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Hia Sleekreek

So sorry that you are going through it at the moment.

This is a safe place to vent, and lots of good ppl to help you get back to feeling like yourself again.

How long have you been dDX for? See I feel the answer your looking for maybe found in your own post. "TBH i have not been consistent with benapali" Taking your meds is page one stuff!

To be clear I'm not saying Bene is the right med for you(wasn't for me)but meds to take down the inflammation of our disease is key imo. Leaving Inflammation untreated can be risky and dangerous road to go down.

I have AS and was DX 7 years ago. I suffer with burning pain in my arms, and every other kind of pain you want to suggest. Since being on the right meds(Enbrel)I have been pain free. Obv we are all different as far as the extent we are suffering but you can't go it alone without the aid of meds(again imo).

I recently went without meds for 2 weeks before I got all my original symptoms come flooding back. It was quite a shock as I hadn't felt so ropey for many years. I had a major decline in my health in the space of that two weeks. I can understand why you are feeling so low mentally also, mind body, it's all linked. I have never suffered from depression, but felt lost and low recently when I was switched to Bene as many others were. I was doing well on Enbrel and shouldn't have had to change.

In summary AS is not going to be wished away! You need to deal with it in the conventional ways and see if that will work. Maybe it's the meds your on are the wrong ones for you. It's a process, it may take a time to get the right treatment. You owe it to yourself and your caring and worried wife to get on the right programme and stick with it.

D

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You've come to a great group to vent and get encouragement. You are not alone. I've been depressed with my pains and RA diagnosis. I just started Cymbalta for depression, but my doctor said it should also help some for nerve pain. Lots of good advice on the posts above. Please talk to someone about having thoughts of suicide. Take things day by day, or even moment by moment. There are clear skies ahead, so hang in there. Sending hugs and prayers for you.

Remember, you are not alone.

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Hi sleekreek, I'd also recommend you let your GP know that you sometimes feel suicidal. It can be terrifying when you're in those periods and difficult to imagine ever feeling any different. Having a plan in place that you can revert to when you're really low, can help get you through them. Suicidal feelings are far more common than most people feel able to admit and in the case of chronic pain are a pretty reasonable response to a crap deal! Do carry on posting, we're all here to help one another. E x

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NASS (National Ankylosing Spondylitis society?) is a very helpful organisation. They run hydrotherapy sessions in hospitals around the country which you may find really helpful - it would also be good for you to meet others with same condition (perhaps you'd feel more comfortable talking about your condition with fellow sufferers) As someone else has said, once you get your medicines sorted out, exercise is really key to pain management. NASS have an app (also available in leaflet form when you join) with specific exercises for back and neck which I find incredibly helpful.

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