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AS and Fatigue

Posted , 12 users are following.

ridley
ridley

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)

0 likes, 29 replies

29 Replies

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  • lilian05079
    lilian05079 ridley

    Posted

    Hi ridley

    It would be more beneficial in your case to get the B12 spray which you use everyday for relieving fatigue and giving more energy....the patches are used once a week..or try both see what works best for you...best wishes...

  • jim93390
    jim93390 ridley

    Posted

    Ridley, you despertly need to get on some biological drugs! once the fusion takes place their is no going back.

    Yes I also have fatigue issues and I am on remecade.

    what seems to work for me...most-time is exercising early morning, eat light meals and avoid pasta, breads. I take a fish oil vitamin, 1 multiple vitamin, B vitamin on a daily basis. Try to minimize the sugar/bad carbs they contribute to faigue swings (crashes).

    • kirstenmd
      kirstenmd jim93390

      Posted

      could you please tell a little more about biologicals?  I am at the beginning of finding out about this and due to my mobile situation I feel it will take some time for proper diagnosis. But it is very clear to me, I have always had severe stiffness since a teenager and as an adult had continual chiropractic/osteopathic treatments to back, neck and head.  Even though I have practiced yoga for over 20 years I look like an absolute beginner and really struggle with flexibility.  Even though I exercise regularly and eat healthily I have trouble with walking up stairs. When recently I began to get wrist/hand and ankle/feet flare ups I started investigating further. Not only did I find out about this condition, I found that my birth father has it. So now I am trying to find out as much as I can as moving countries I will be faced with a new doctor and I want to be well prepared. Thanks!

       

  • robert53460
    robert53460 ridley

    Posted

    I can not speak for evryone, but i have exactly the same issues. I used to be super physical and now i have a desk job where I am constatly turning from side to side. I figured a desk job would be good but sitting seems like it makes my issues worse. When I was diagnosed as havingg AS, I hurt but I was not fatigued. Now I just go to work, then come home and lay on ice. My weekends are spent laying aound recovering.  It seems like i have lost alot of friends that I used to hang around with mainly because I do not have the energy or the not hurting. Its hard to go out and have fun when you think you are being a hinderance or drag on others.
    • kirstenmd
      kirstenmd robert53460

      Posted

      Hi Robert, may I suggest a few things which have really helped me? Look into myifascial release massage the fascia get tight and this is what pulls the bones and joints together worse. Try to to sit too long but hero moving however flow just. Work on rotational movements of joints and gentle movements of stretching whenever you can. I use a variety of things at work and hone. A chair with a strong back and tennis balls I can Roll up and down the spine to release also under the shoulder blades and at the hips. I now do this in the car when being driven. Drink a lot of water. I mean a lot. More than you want. Eat low carb. Avoid salt sugar wheat and alcohol. Use a paleo diet with lots of natural oils. Avocado and coconut are good. Take vit b magnesium gyclosomine sulphate and msn supplements. For pain try arnica and rux tox. A German product called trainees is very good. And yin yoga is amazing. I also sleep flat with a pillow under my legs with a slept mask all of which helps quality of sleep. I also find meditation helps with mindset and pain as you stop thinking about it. I recommend Deepak chopra you can find him on you tube. Also on you tube you can find myofascisal excercises with hands and tennis balls. Spend time in water and warmth it really really helps. My favourite is steam followed by jacuzzi float. Most important to keep moving other wise you will seize up. Good luck! Keep positive
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