AS and Fatigue

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I have had AS for a long time now, 20 years+, and was diagnosed 12 years ago. Since then I have just been prescribed CoCodamol and Dicloflenac for when the pain is really bad. However I try not to take them regularly as I do not want to become addicted or succumb to any of the other side effects. Also I cannot really take them when at work as I teach and the CoCodamol tends to make my cognitive functions be less then optimal eek

Although the extreme pain comes and goes in flares I am always in pain when I stand, lie down etc however my biggest issue is fatigue. I just cannot function properly, I can sleep for 15+ hours straight and still need another nap within a few hours of waking. I come home from work and just have to sleep, sometimes for 7 hours before I wake enough to have something to eat and back to bed before another day. Weekends are spent "recovering". This is no life, I don't go out, see friends or socialise in any meaningful way (the last time I went out was in December 2016)

As a teacher this is a problem as I should do a LOT of work in the evening but I just cannot. So I fall behind with my work which is leading to problems at work.

I have been referred to a rhuemy (I have not seen one in the dozen years since diagnosis) and am awaiting an appointment. 

Does anyone else get this fatigue? This disease is ruining my life.

(I am in the UK)

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  • Posted

    Hello Ridley...yes indeed fatigue is common with many of us who suffer from AS.. Sometimes I go to bed at 10 p.m. sleep all night and then sleep another 4 or 5 hours during the morning. Other times I can't sleep at night because of pain and discomfort but I can sleep all day until late evening without being woken with pain...

    AS is strange as the symptoms change almost daily...different parts of the body being affected at different times.  Today it's my knees, tomorrow it might be my shoulders or hips...one never knows. But the fatigue goes on forever. We miss out on life so much. I don't know what the answer is to this and I doubt any specialist would do either. If you get any clues or ideas..please pass them on to us...it's an enigma we'd all like to know more about.

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  • Posted

    Absolutely the fatigue is real and a real problem.  The disease causes so many problems including absorption of iron and other things that its hard to find a fix for the fatigue.  My wife already knows that my afternoon nap is a reliable part of my day and I am not working and sleep late.  On top of that you often take medications that add to the problem including narcotic pain pills in my case. 

    ​   My wife was also a teacher and grade school administrator and I vividly remember her nightly paper grading.  I mentioned your problem to her and she just shook her head.  No way she could have done that with the fatigue of an autoimmune disease.  She suffers from Rheumatoid Arthritis herself but her Remicade treatments are so wonderful that sometimes her energy levels are through the roof on most days.  Wish we could find something similar.

    ​  Hope you can find a way to deal with this issue effectively.  Maybe you can get an aid to help you with some of your evening responsibilities such as grading papers.  Make sure your administrator is aware of your problems and maybe they can help you find a good solution but believe me, the fatigue is real.  Best of luck.

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    • Posted

      Thankyou for the reply.

      I have kept my school informed and they have bought a chair but just do not seem to understand the fatigue. I guess it is as its invisible. I have asked for reasonable adjustments to be made but have been ignored, litterally! 

      I have told them I being tested to find the cause and that I am awaiting an appointment with a rhuematologist. 

      However they have now started proceedings to get rid of me, I will fight but I do not see a positive outcome on the horizon sad

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    • Posted

      If you are in the states, you may want to review the EEOC and ADA Amendments Act of 2008.

      It is never too late to ask for reasonable accommodations. I not a lawyer, but simply asking for accommodations even at this point might send them a message and slow the already "started proceedings". Technically you are not required to mention the ADA, just ask for an accommodation to anyone in an supervisory/administrative role. Keep records of when and what you ask for. You aren't required to say much if anything in regards to your condition. A Disability Program Manager (DPM) or someone in HR may request more information but it shouldn't come from a supervisor. 

      If you requested accommodation even informally the request should have been passed on to HR/DPM. Denying an accommodation or ignoring it could help an EEOC claim. 

      Don't think any request for accommodation is too small at this point. They would be foolish to turn you down. Examples: ask for a foot stool, to be allowed to stand or sit anytime you feel necessary (if there are formal or informal policies), an ergonomic mouse, better parking (disabled parking may not be necessary but you need the abillity to park in any available parking at your descretion for you daily variable needs), a sit/stand desk.

      Many of us have been concerned about how our SpA or autoimmune disease could impact our jobs. I'm sorry you are in this situation. 

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    • Posted

      Thanks for the reply, I am in the UK. We have the Equality Act 2010 here which requires employers to consider reasonable adjustments that would allow an employee to continue in their job. 

      I have asked for some adjustments but I have either been ignored or the request has been denied (other than a chair). For instance I have requested that I be allowed to call a specified person on arrival in the mornings rather that log in using the finger print scanner that is some distance away and difficult for me on arrival. My request was denied.

      If it wasn't so ridiculous it would be funny but one of the criticisms that students have made against me is that I do not move around the room as much as other teachers to help them, senior management have made moving around more a target....... 

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  • Posted

    I can't believe that in 12 years you have not seen a rheumatologist. Was it your GP that diagnosed?

    I find biologics help with the stiffness, fatigue and some of the pain. Where damage has already occurred you will still get pain. Does it not worry you that damage has probably progressed with your current treatment. Hopefully a good Rheumy will get you on the right treatment. To fit criteria for biologics you must have tried 2 NSAIDS at there maximum dose, so it may be worth getting your dr to prescribe a different NSAID.

    In regards to the fatigue meantime Vit B complex is very good at easing fatigue, won't get rid of it completely but makes it easier to function. Good luck

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    • Posted

      I was diagnosed by a rheumatologist and the letter sent to the GP asked for a follow up in 6 months, that part didnt happen. It is only recently when I asked for my records that this came to light.....cry

      Yes it does worry me as 12 years ago I cannot remember it affecting anything other than my SJ but now I have pain in my upper back making it painfull to cough/breathe deeple/roll  over at times esp during a flare. 

      Interesting re NSAIDS as I have only been on DicloFlenac, what is the maximum dose?

      I will ask my GP for a different one to be prescribed. TBH I have tried to limit the DF as I know that it can cause gut problems and with my guts that is the last thing I need.

      I will get some Vit B.

      I have to be honest the pain is manageable most of the time, it is the fatigue. I have just forgotten what it is like to be normal.

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    • Posted

      Max dose of diclofenac is 50mg three times a day. If you plan to take regular ask for a ppi to protect your stomach. I have the rib pain you describe, and is excruciating when I get a chest infection.

      My ribs are already fused to spine which is why I get it, the likelihood is you have some fusion there too, or if your lucky just inflammation at the moment. You need medication to slow the progress of this illness, irrespective of pain. I wish you well with your Rheumy appointment 😁

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    • Posted

      Unfortunately not. It's the only effective way of reducing inflammation, NSAIDs just reduce inflammation enough to ease pain. NHS England make it difficult to get biologics, you have to score higher than 4 on the BASDAI, have tried two NSAIDs, and disease must be active,

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  • Posted

    Hi ridley

    I am waiting for the results of blood tests to see if i have the AS gene. HLA-27B....I have pain in random places each day....some days mild some days extreme pain in my rib cage, sternum, top of spine, base of spine and hips, thighs and occasionally my heels. I used to get extremely tired..on waking and getting up I would feel exhausted and by 3pm in the afternoon i would be wiped out and then during the evening. Are these likened to AS symptoms.

    Recently i have been doing exercise each morning to loosen up the stiffness ..also having snacks in between meals keeps me a bit more alert...also i use B12 and B vit patches or spray which gives me energy. I get these online from well known web sites as they do not sell patches or sprays in pharmacies........these may be of help to you in your job......

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    • Posted

      Hi ridley

      I don't eat anything heavy when snacking just say cup of herb tea and a few biscuits...or small sandwich..or piece of cake....i feel wiped out after a heavy meal....hope the B12 and B vit patches help......best wishes...

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    • Posted

      Hi ridley

      I am not a young person i'm over 40....the pain started in lower spine and hips..then top of spine and neck , thighs, ribe cage and chest bone and left shoulder....no two days are the same some days the pain is mild...other days no so mild....i exercise to loosen the stiffness that comes with the pain which is much worse in the morning exercise seems to work..after exercise the stiffness and pain goes 50%.....also moving around helps but stiffness and pain returns if i am immobile such as sitting or after driving......

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    • Posted

      I did not get diagnosed with AS till 6 months ago when I was 51. Had backpain all my life, but I'm a nurse so to me it's part of the job. I already had 2 slipped discs, so put buttock pain down to this.

      5.5yr ago my pain in thoracic spine and neck, became unbearable. I've seen 3 Rheumys over these years and was treated for Polymyalgia with steroids. It was only in Sept when I mentioned to my Rheumy that I could get to sleep ok, but woke at 3-4am with severe rib and pelvic pain that improved within minutes of moving. X-ray showed partially fused sacroiliac joints. I was seen by a spondylarthropathy expert thankfully, who straight away confirmed AS and showed me all the damage on my MRI.

      It is called late onset AS, and can progress to changes quickly in the spine, whereas with younger it is slower. I was screened and put on biologics straightaway, which has reduced the stiffness considerably. Where fusion and damage are, I still get pains, they have improved slightly, but can't expect miracles. See your GP, don't be fobbed off by the old attitude; only men get it 😏; you need to be positive for the gene - 10% AS patients don't have it; and your not too old. Your GP could organise X-ray of sacroiliac joints, but MRI needs ordering by Rheumy, as it's a special sequence looking for inflammation. Good luck, let me know how you get on. 😁

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    • Posted

      Hi maureen61742

      Thank you soooo much for your reply..i too was diagnosed orignally with Polymyalgia Rheumatica and put on steroids i am completely off the steroids now. I saw my Rheumy last week and she is doing several blood tests as well gene test.....the pain started 2 weeks after tapering off the steroids..my Rheumy has had x-rays taken of thoracic spine she will give me results next appt...i too have degenarstion of my lumbar region discs...my pain is mostly in my spine and lower regions..it certainly sounds like AS but have to wait for blood results, gene test and x-rays......i will keep you posted..best wishes...

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    • Posted

      I was fortunate to be referred to one of the top spondylarthropathy experts in the country for my diagnosis. She works for NASS. I'm surprised your Rheumy has not ordered X-ray of SI joint, as that is part of the diagnostic criteria. Usually they order MRI as well. You don't need to be positive for the gene, and with late onset is is unusual to be positive. If your Rheumy dismisses it, I would be asking for one of NASS medical advisers for opinion, as you are classed as atypical. I live in Kent and had no problem from my GP referring me to Leeds. Good luck. Your Rgeumy can also request a second opinion from one of these experts.

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    • Posted

      Hi maureen61742

      I think my Rheumy is doing the blood tests first..I think she suspects Rheumatoid Arthritis and is looking at other possible conditions...if they come back -ve i guess she will order more x-rays and MRI Scan.....i am not seeing her until August...i have to go to the hospital before August for 10 blood tests...My doc can get the results up and if the gene is showing or RA or anything else i have to call my Rheumy's secretary who will contact my Rheumy.....so i shall be going for the blood tests next week.....i will keep you posted....thank you so much for your info.....best wishes..

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