What kind of fatigue do you suffer? Is it all this syndrome or something else also? It is a really difficult problem for me. I work from 9 am to 14 pm and after that I am exhausted and have to rest the rest of the day. Is it Hughes that can cause this or CTD which I have? Maybe lupus, but doctors are not sure yet. Those of you who have fatigue, how do you describe it?

13 Replies

  • Hi Leenaline: I have extreme, overwhelming, fatigue.It hits so suddenly, I must sit or I will fall. It is as though a huge wind of sheer exhaustion engulfs my body and thinking slows to a twilight speed. I gave up a long time ago trying to figure out which if my diagnosis or medications could take the sole blame. It has happened much more often, and is steadily increasing since I was diagnosed with APS in 2011/12. Before that I was being treated for CNS Vasculitis. Oddly, the treatments are very similar. Mega steroids, chemo. In the States they were very clear that they put the CNS "in a quiescent state". That means you always have it, it's a matter of how often something stimulates it awake and to what degree. The word quiescent means sleeping. They pretty much said the same thing about rheumatic fever and autoimmune disease in general. It was explained to me that I will always have it, it is just a matter of what wakes it to roar it's ugly head and it has the ability to morph from one active autoimmune disease to either awakening an old one (example; an APS flare) or it morphing into a new autoimmune disorder. Professor Hughes has stated that to him if you are diagnosed with Hughes Syndrome, thyroid and other autoimmune diagnoses are not far behind or will run concurrently. I used to beat my head against all my research books looking for ... the cause. Then one very, very painful night I thought - there is no way to ever tell what is causing what and that it does not make much difference because at this point all they can do is treat symptoms which present very similarly.

    I don't waste time on the whys and wherefores anymore. Now, I just try to educate myself as much as I am able - to my specifics. No two cases are ever exactly the same, but I have learned quite a bit on this forum. Mostly from co-patients. If I were you, and I was, I'd start considering cutting back on my hours. I would have worked (I thought) till I dropped over my desk, but I had to face the fact that I would rather go out on top with people thinking well of me than to allow that disease to make my work substandard due to symptoms. What I did not realize at the time was for all the hours I put in at work to keep my work superior, I took away from my children who really needed it so very much more than my ego. I am fortunate enough to have a dear friend of over 50 years who keeps me "earthbound". I credit her with making me realize that my competitive nature served it's purpose and now its time to listen and concentrate on my body. I cut my hours. She was right. The weeks I worked fewer hours, the less painful and overwhelmingly tired episodes I would have in a day. The more room in a day I had to pace myself. It didn't take more than 2 months to realize I'd rather go out at the top of my game at work. So I took disability. With that I set up a physical exercise program, made changes in our family's diet, started doing brain exercises and looking into some homeopathic remedies. I made some changes in how I deal with the pain I have when I have it. It allowed me to eliminate some medications completely. Although I loved it, not working was the best thing that happened to me and lowered my pain many different ways by eliminating work.

    Think about it and talk it over with your doctor. Mine, ALL OF MY DOCTORS, agreed I should have taken disability long, long before I did. I also should have gotten psychiatric help to deal with pain long before I did. That helps immensely. Well, those are all my" helpful hints to help heal". I hope you can find something that helps you.

    Warm wishes,


  • I don't know about anyone else, but I found that inspiring!.


  • Thank you so much CanaryDiamond!!! I have been thinking of cutting my work hours for long time. Already I work only 80 %, but thinking of reducing to 40 %. It means that we as a family have to spent less money (don't remember the word for this...) I got a lot of courage from your message! When I work less I have seen, I feel better and whole family feel better.

    I also have had this condition for long time, without diagnose, and understanding until now. I am happy for diagnose, it is easier to explain to people, And I know I think too much what people think.That's why I work, even exhausted.

    There is a lot to think about in your writing! Thank you!

  • Thank you for taking the time to post this reply. The first paragraph was especially helpful. I get really frustrated when I have a bad flare and start to look at what I may have done to cause it. Maybe I need to ease up on myself a bit. x

    This was a reply to Canary Diamond. Think may have pressed the wrong bit!

  • Ha-ha! Thanks Sarah~ It's good to be inspiring! It happens so rarely, I'll appreciate the moment immensely.



  • Your welcome Canary!!Everyone has there in cross to bear, and I think you explained yours in simple detail!.I am currently debating whether or not to reduce my hours, and my husband agrees I should not be working full time, but financially we really cannot afford to, we are going through the ' books' right now trying to see if we can make it work! Sarah x

  • Hi Leenaline I am on round three with my doctors trying to find an answer to my fatique. I find that when I push myself for too long, ignoring that I am tired, the fatigue and mental exhaustion gets so bad I crash. I have been documenting the days when the fatigue is worse and still haven't seen a pattern. I, like Canary D. Am coming to the realization that this is my new life and the only thing I can do is slow down, listen to my mind and body. Unfortunately, I still have to work 12 hour days for now. I don't expect much to come from my doctor's since most of them don't have a clue about APS and my hemotologists great advice is "Can you leave your job? Hopefully there will be more awareness amongst doctors about the extreme fatique that APS can cause. Best of Luck!

  • Thank you mudusa! I think also here doctors don't understand that this condition can cause fatigue. I am so relieved that there are others that have so similar symptoms. I am so new with this, I should also read more old writings form here. It helps so much.

  • Whenever I feel really bad I read the post, makes me feel like better to know I'm not alone and APS can cause flare ups and fatigue.

  • Leenalina: I was thinking about you last night. You might try a different strategy. Print out the very basics of the disease from HSF for your Human Resources VP. Let them read what you and the doctors know. That should take 15 minutes. Then sit down with them and figure out how much of your job you can take home and e-mail in. I did that for a while and found my employers (a hospital) very amenable. Too amenable. They kept finding more and more work that could be done at home and e-mailed in straight to the printer so that when they came in the next morning the work was in a nice neat pile in the printer. Finally, I had more work than what I had at full time work! I can assure you it didn't last long, but my employers gave it a valiant try. That sense of accomplishment is very difficult to give up, but honest... it's just a matter of refocusing your priorities. Always remember, the #1 priority must be your health or the rest is for naught.

    Smiles and warm wishes on your journey.


  • Funny, yesterday I thought of printing these facts to my doctor, but it is a good idea to do it to my employer also. I have done already some of the work at home. That is a good idea to increase it. But not too much :) . At home I can lie down while using laptop. The fatigue is like that that I am ok when I am completely resting, many times even siting is too much. Thank you Canary! :) You too!

  • I think a positive outlook helps make the condition easier to live with. But unfortunately I have not found anything that can beat the fatigue long term when it really strikes.

    Thats unless they invent a motorised bed that can follow you around.

    I still have this inner argument with myself, that surely I could do things differently or have done something different to prevent the latest level of fatigue. But I am at present feeling that its going to be something that I dont understand that will determine my future level of activity or ability.

    I still make plans. I think it is important to do so. But so many ideas are now scaled back or postponed that it is an ongoing inner frustration.

    When the fatigue hits, you need more rest.

  • "When the fatigue hits, you need more rest." That is so true overnighthearingloss. It is the best medicine for fatigue I think. Last week I got Prednisone for trial and it did really work. For four days. I was amazed, I needed to sleep three hours less than usually and worked from morning to evening. I looked for information and found from Hughes Foundation web pages that Prednisone helps in extreme fatigue when you have APS. But I did too much. After four days I was sooo tired. Also got fever.

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