Ankylosing Spondylitis and Fatigue

I was diagnosed with AS 12 years ago but I think I had it for many years before this. I am currently on CoCodamol and Dicloflenac.

It used to come in "flares" with lapses in between but now I have "flares" with less pain in between and it seems to have spread to my upper spine ribs as it is now painful esp when breathing heavily etc. As for coughing or sneezing, absolute agony.

But strangely it is not the pain that I find so hard it is the fatigue, I find it difficult to get through a day without falling asleep with exhaustion. I teach and to do my job properly I have to work into the night but just cannot stay awake in the evenings. Monday evening is usually OK but as the week goes on it gets impossible. Weekends I spend recovering.

My Dr had me tested for sleep Apnoe and I came back negative but the monitor I wore showed that I was asleep for 16 of the 17 hours being monitored, I was still asleep when the monitor turned off and slept for a few more hours. I was asleep again 4 hours after waking.

I have asked for a Rheumy appointment but the NHS are so slow and then they cancelled.

Although my school know of my problems they have not come up with any Reasonable Adjustments despite asking for help.

I have CoCodamol and Dicloflenac for pain but taking those when teaching is not a good idea as I am not sure I am in complete control when on them, besides they just send me straight to sleep.

My social life is non existent, my house is a tip and my school wants to get rid of me, all because I just have no energy and find it difficult to move as well as I could.

I am at my wits end.

29 Replies

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  • Just read your story you should be commended for your commitment i say well done💐

  • Thankyou, wish you would tell my boss that :-)

  • Can you self refer to Occupational Health at your school? Think you may benefit from some of their input as they can make decisions on extra breaks, things like that. Are you currently under a Consultant for your AS? You need input from them for proper medication for your AS. Hope that helps

  • I have seen OH before and will be seeing them again soon. In the past I have felt that they are there just as a box ticking exercise,

    If anyone has any advise on how to approach dealing with OH I would be much obliged.

    I am currently awaiting an appointment with a Rheumatologist but it is taking a long time (esp as the appt was cancelled). I am also awaiting an appointment re the fatigue, but I feel that is related to the AS.

    The school are aware of all this and I have made them aware that I am struggling, but have not put in any adjustments beyond buying a chair. I have 18 classes to teach which need to be marked once every three weeks, ie more than 40 books per day. At the moment I struggle to stay awake after school never mind spend 4hrs+ marking plus prep. This is not sustainable for me at the moment.

    The school have started to make moves to remove me. I am scared now.

  • Can I suggest, coming of the diclofenic if you have been on it for a period of time, as this I am sure has given me Heart AF.

    Also if your given the chance to have Simponi injections for your AS, grab it fast, I started mine in November and it has Made movement so much easier.

  • Is that an Anti TNF like Humira? My movement a lot of the time is "OK" it is the fatigue that is making my life a misery. Has it helped with that? I do intend to discuss A-TNF with R when I get an appointment.

    I know the issues with Dicloflenac and so try to stay away. The CoCodamol is quite effective as a pain killer but really sends me to sleep after making me a little high. Neither of which is good when responsible for 30 students. So I tend to only use after school unless desperate. (at which point I should not be in the school)

  • I think co-codamol affects women a lot more, with the side affects, I have been taking it for as many years as I can think back to, and that's normally the full dosage and very rarely affects me at all.

    The Simponi is a anti immune drug, that eats away at the over build up of calcium where the body tries to replair it self. So far I can not fault it, it's helping me so much with movement, I can stand from sitting in a chair with out holding on to anything, I must admit the pain is still bad, but the movement means less strain. And my neck was almost immobile and agony with trapped nerves, but now it's almost back to normal.

    Yes you have to make some life adjustments to avoid infection via people and foods so you tend to wash your hands a lot more etc, but it's been worth it for me.

    Hope it works well for you too

  • Did it have any effect on your fatigue, assuming you had that?

  • I would say yes, because being able to move easier makes less strain on the body, and I don't really start falling asleep till about 7pm instead of 2 😀

  • My problem is that being a teacher falling asleep at 7pm will make things difficult re marking which can quite easily take till 10-11pm.

    Depends what you mean of coarse. At the moment when I get home I am "out of it" with tiredness and just flop, TBH the afternoons are just like that anyway surviving on adrenaline.

    If on the other hand I was alert(ish) till early evening it might be possible to at least get something done.

  • Well to be honest it stopped me from working back in 2004, so in the end I admitted defeat. Life really ain't been easy especially under Tory rule, but we have to do what we can. I hope you can find some relief from the grind of this horrid condition

  • Are you "retired" then?

  • Not officially, I am 54

  • Sorry to hear if it is not by choice. I have just turned 53.

  • No really not by choice, I loved my last work as a breakdown recovery driver, but it was just to much, along with some serious anxiety problems and a few other health problems I had to say no more. To be punished for this decision by this Government is really hard to take when you suffer so much, but I will keep fighting them as it's my life they are playing with.

    thinking about your situation earlier, and could you not consider private tutoring ? This way you could adjust your hours to suit your health.

  • All things being considered but am fighting the school first re non consideration of reasonable adjustments despite many, many requests.

    Do you get PIP or have they been denied?

  • I still get life time award DLA for now, but due to change over to PIP very soon but dreading it. I have advocacy set up when it happens, but I know it will still be a nightmare as was ESA

  • I think one of my problems may be that I am just used to being so stiff, in pain and not being able to do things like go out etc that I am lulled into thinking that this is "normal". It has been going on for years (needing to sleep for hours and hours after work) and it is making my "life" a misery.

  • Ridleyrumpus, God bless you and sending hugs your way. I too have chronic pain from spinal and cervical stenosis and 5 neurological disorders. Cannot find a Dr to help with pain. Only get baclofen 10 MG's and Lyrica Not much help and I sleep too much. I cannot advise, only empathize and prayer. Good luck!

  • If you do face job termination, you may consider applying for social security disability like I did. It took ten months and two denials to get approved. Finally called Allsup for help. Once I called them, I was approved in 1 month. I am retired now. Managing pain is my job now.

  • Thanks for the link but I am in the UK so that doesn't work for me, I am not sure that we have an equivalent over here.

  • Hi ridleyrumpus

    I would say you definitely need to see rheumatology ASAP. I'm a bit confused to be honest. Are you saying you've had a diagnosis of AS for 12 years but never been referred to rheumatology before? That's incredible.

    An anti- TNF should help with fatigue. I'm on Humira (for RA) and it has been extremely effective for me. I realise AS is not RA but it is an autoimmune condition, fatigue and inflammatory arthropothies go hand in hand. Get the ongoing 'ramped up' immune response under control and, in theory, it will help your fatigue.

    I don't know anything about your medical history but it may also be worth looking into any possible nutrient deficiencies as these are also common in autoimmune conditions. I'm thinking vit b12, vit d, iron, zinc, magnesium, potassium, etc. If your GP is willing you can get tested for these things, but I would strongly recommend you do some research first as the dear old NHS regards some levels as 'normal' when others may disagree.

    Are you anaemic possibly? That won't help energy levels and again is commonplace with autoimmune conditions.

    I would also suggest popping over to the NRAS board on HealthUnlocked. There are plenty of folks on there with AS that will be able to give you more specific advice to your condition. While there you could have a read up on a dietary approach to autoimmune diseases. Most of us would say we eat (what we consider) a healthy diet - but there are lots of people that swear by either a plant based diet approach or versions of it (alongside a medical approach). Look up any posts by a poster called Kai-- as they have lots of links to interesting information.

    If you can afford it you could speed up the process of seeing a rheumatologist by going private for the initial consultation (between £100 and £200 probably) and then transferring to their NHS list. Also bear in mind you can go to any hospital you want so if one has a long wait try a different one. And you may be able to get a cancellation - worth making a few calls anyway.

    I think you do amazingly having put up with this for so long, but I definitely feel that you can get help to improve your energy levels - starting with a rheumatology appointment! And if / when you do see a rheumatologist don't do what we all do and downplay your symptoms. Tell them exactly how difficult it is, how it affects work to the point you aren't sure you can continue, fatigue, pain etc.

    Oh yes, are you in a union? If your employer is being difficult a union will help, particularly at a school. You have the disability act on your side, they must make 'reasonable adjustments'. It's the law. The CAB can also advise on these matters.

    I know it all seems like a lot to deal with but I firmly believe you need, and should be getting, extra help medically and from an employment perspective. Those that shout loudest (although not literally) get most with the NHS. Start (metaphorically) shouting!

    Good luck.

    🙂

  • Thanks for the reply.

    I was diagnosed with AS in 2005 and have had no follow up appointments since despite have been signed off work loads of times for AS issues.

    It is only in January that the GP looked up the diagnosis and noticed that they had requested to see me 6 months after the diagnosis, so that would be 11 1/2 years ago. I hadn't seen that letter before. (Note to self always request a copy of all correspondence.) Hence why I have only been referred again this January, I had an appointment for March 10th but it was cancelled on me.

    I have been tested for anaemia and was mildly anaemic, so was put onto iron supplements but this did little or nothing for fatigue and to be honest didn't really change my iron count either.

    I am not strictly following the diet but am trying to cut out carbs and will look into it more because this cannot carry on like this, my life is passing me by.

    The problem with reasonable adjustments is I do not know what to ask for, I can and have described what I find difficult and then I get asked what I need. Well to be honest I find it difficult/impossible to spend enough time after school marking etc. So what do I ask for? They have suggested part time but I have resisted for financial reasons but also as I feel that it is not a reasonable adjustment to go part time in order to work on the day off to catch up. Maybe I am wrong.

    I am getting union support but I have not been overly impressed with them in the past. Far too willing to roll over.

  • Dood news have seen Rheumy and been recommended for an Anti-TNF :-)

    Takes 12 weeks though before it can be prescribed.

  • Here's hoping it goes through and you find it effective.

    Humira has made a huge difference for me, although Enbrel didn't do much - so if the first one doesn't work there are still other options.

    Good luck.

  • See a McTimony CHiropractor. They may be helpful for the back problems. They do know about painful rib problems.

    See an Alexander technique teacher. They should be able to give you the skills to get through the school day.

    Hope this helps.

  • Insist on going back to see a rheumatology doctor. There are much better ways of treating this disease than taking diclofenac and Cocodamol.

  • Had an appointment with a rheumatologist on Wednesday and have now been recommended to go onto Anti-TNF. So I am now being screened for diseases that would exempt me, I had blood tests and X-Rays (loads) on Wednesday.

    Assuming the disease is still active in 12 weeks I think I will be on an Anti-TNF.

    I really hope that that helps.

  • HI - have you considered trying traditional acupuncture? I am convinced this is helping me.

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