AS Questions

[DeanPhillips]

Ok here goes, I’m 33 and about a year ago I was diagnosed with potential ankylosing spondylitis, even though it’s clear on the x-rays that the vertebrae are fusing together. I was also diagnosed with potential costochondritis (believe me it hurts!!)

The Rheumatologist sent me off for an MRI which I just couldn’t hack due to claustrophobia, so was referred back for a CT scan on my lower back, which I dutifully attended and then nothing, no contact, and a year offer the diagnosis I’m stuck with no clue where to go but I have a whole load of stuff going on and basically I feel like I’m losing my mind!

I’ve been suffering with heart palpitations for over 3 years which are really starting to bother me

Anxiety

Slow Digestion with terrible bloating

Headaches

Irritability

Insomnia

Fatigue which is affecting not only my job but also my ability to care for my kids :/

Terrible chest Pain around the sternum which worsens when I physically move which helps me rule out cardiac pain per sé

Is any of this consistent with spondylitis? I feel like I’ve had this diagnosis and just been dumped with a small leaflet and no support!

I’ve tried seeing GP’s but they either don’t know or the appointments don’t have time to go through everything and don’t even remotely scratch the surface!

My main question is can AS cause palpitations? That’s my main bother when I’m trying to sleep!

Sorry for the long post, normally I lurk about in the Anxiety and depression section giving good vibes but I really need some help!

[JFlay]

Hi, sorry I don't know about palpitations being a symptom but it sounds like you really need to push your GP for another referral to rheumatology! Hope you can get that sorted.

[Kerensa21]

nass.co.uk/ for

lots of info on AS.

Not sure if I’ve read it right but if you or GP have had no feedback on CT scan after a year, could you email rheumatology/patient advice line with your concerns? Good luck.

[sylvi]

I don't have a answer for you darling, but I am sending you a hug from me to you.xxxx

[Hidden]

I’ve been told by my cousin (a doctor) that you have to be referred when in pain... easier said then done.. make a list keep a diary push for an appointment and bring someone with you. If you are in so much pain go to A&E they can then refer you. Sorry I can’t help but please let us know how you get on

[oldtimer]

I think that you are most worried by the palpitations? But to me it seems reasonable that you would be anxious (and get palpitations) with all those problems which seem to have no medical management plan.

Anyone with a long term condition is understandably anxious about the future and how you are going to manage work and life in general. Sometimes it gets on top of you. I presume you have looked at coping mechanisms like Cognitive Behavioural Therapy, counselling, etc?

If you have Ankylosing Spondylitis - what is the management plan for that? Are you exercising regularly? Do you belong to the local group if there is one? - the group locally to me run regular sessions in the hydrotherapy pool which they find very helpful. What are your options for medication?

Perhaps next to each of your symptoms you should write out what would help to manage each of them? I find that those of us with long term conditions have to find the best way of managing for ourselves, often through trial and error!

[Patient0]

Have you ruled out food causes? I had many of these symptoms when I was eating gluten, dairy, eggs and soy. Something your doctor won't even suggest looking at in my experience. I eliminated these foods and aided detoxification with a herbal supplement, worked on my stress through a powerful type of meditation.

You could also try a sauna 4 or 5 times a week to help you detoxify and also switching your shower from hot to cold (cold shock therapy). You can try all this whilst on medication and see if it helps. Or if you can afford to go see a Functional medicine doctor, I found them so useful in identifying what could work.

[charisma]

Hi Dean

It’s no wonder you are anxious about being left like that, especially with clear evidence of fusion in the spine.

As another comment suggests, your quickest chance of re/referral and answers plus treatment, is to go to Out of Hours (dial 111, UK) or A&E.

Best of luck!

[Hidden]

If there is evidence of fusion on x-ray then you shouldn't be left hanging: follow up with your GP to find out if you are still on the rheumy's books. If not get the GP to refer you again as you need to be on some meds if you have AS to slow progression.

My main complaint was fatigue - I never bothered to mention the pain in my back if I stood for more than 5 minutes or the hip pain I had on waking as they both usually went away after a few hours of moving about. Textbook AS, not that I knew that at the time!

The palpitations are possibly caused by your anxiety. Costochondritis is common in AS. I know the MRI isn't the most pleasant thing to go through but if it's offered again try to do it - I found keeping my eyes closed the whole time and humming to myself helped with the panic as I also suffer with claustrophobia. For them to get a good look at your whole spine and pelvis you are looking at about 45 minutes in there. Also see if having it done at a private hospital is an option - I've had one at my local NHS and one at a local private hospital (on the NHS, it just happened to be the next available appointment) - as they tend to have newer machines and they are not such a narrow tube anymore. They may also be able to offer you one where you sit for it rather than lying down. Or there's always a mild sedative! TBH at first when they are looking at your neck you are barely in the machine, and once they get to the pelvis your head is very close to the other end. There's also a nice soft breeze blowing on you all the time.

Bowel problems are also common in AS - a lot of people have IBS or IBDs - if you have an IBD then biologics will help that also hopefully. Are you taking any pain meds as a lot of them will slow down your digestion and cause constipation.

As someone else said above, NASS is very helpful, they havea range of leaflets about all aspects of the disease.

Hope you get it all sorted! K