Is disabling fatigue, which can be worst 2/3 days after any overexertion and can take over a week to resolve, a common feature of Hughes?

I am newly diagnosed with Hughes, secondary to what is now being called atypical Lupus (previously thought to be ME/CFS), and possibly also POTS - and am wondering about this diagnosis. The post exertional malaise I experience (which, along with other symptoms, can be triggered by physical, mental or emotional activity) is well documented as typical of that experienced by others with the illness/es currently known as ME/CFS and is frequently claimed to be unique to that condition. Moreover I have to remain with daily 'safe limits' in respect of the amount and type of activity I undertake; I have no real remissions to anything near to a 'normal' life. I currently know next to nothing about the nature of fatigue/its pattern in Lupus and Hughes. Does my experience resemble that of others with both these conditions or is what I experience unusual for a patient with such a diagnosis? Grateful for any input!

10 Replies

  • Hi,

    I've had CFIDS (chronic fatigue immune dysfunction) for over 23 years. One of the problems is that over exertion can take a long time to resolve, which is why someone with CFS/ME (CFIDS) has to be so careful with exercise. I used to be so active. When my 'back-then' doctor told me I could walk for 5 minutes, I thought he was joking. He was not. So, it's not Hughes per se, (although Hughes can have it's own problems and many over-lap conditions) but rather the CFS/ME you are talking about directly with exercise/exertion rebound problems. Do you have a specialist for this? It is hard to find a good one. I do wish you all the best!!


  • Thank for this, Leigha, and your good wishes.

  • What you describe seems quite typical to me and is often misdiagnosed especially as Fibro or Me/CFS, although I suppose they could also run together. It s quite common however for those of us that have had those diagnosis to then also be dx with Sjogrens or autoimmune Thyroid disease and be prescribes Plaquenil which is very good once it kicks in for pain and fatigue. Has this medication been suggested to you?

    I would also strongly suggest having a full Thyroid profile blood test done including thyroid antibodies as if your thyroid is involved this can cause a lot of fatigue issues.

    Please have a look at the HSF website which you can get to by clicking on the Hughes Syndrome logo at the top of the page and then clicking on the link. You will find lots of helpful information relating to all that I have mentioned on there but for any further question here please don't hesitate to ask.

  • Many thanks!

  • Good idea, and I should have suggested. Along with all these syndromes thyroid is often a problem. As is, although not as often, low adrenal. There are so many things which need be addressed by a proper clinician.

  • In short yes, I can be whacked for several days after over doing it in some way. Overdoing it can even be a long drive not just physical exertion. I have attended pain clinics and courses when they all talk of pacing. Trouble is pacing doesn't get some jobs that need doing done, we just pay a higher price.

  • I wish that more money could be poured into fatigue research as it is such an issue for so many people.Anyone unearthing a method of easing fatigue would make a mint.Like you I felt that my fatigue was caused by MS/CFS as it happened overnight with not a sniff of fatigue beforehand despite being diagnosed with APS previously.As I understand it the norm with APS fatigue is that it is gradual onset and not sudden onset.I wonder if there are hybrid conditions which have features of various autoimmune conditions ?Some people with Lupus/APS can run marathons yet others can barely walk.Everyone seems to be affected differently with little rhyme or reason.Plaquenil, mentioned by APsnotfab above seems to work for some people but not others.Odd really when you think that if the main aspect of APS is sticky blood then something that works for some people should work for most-also some people are much better on e.g. Warfarin whereas others are not.A conundrum.I think the hardest part of all is that there are very few people knowledgable enough to offer thoughts on the issue.You have to be your own researcher.Pacing,whatever the cause of the fatigue is the most sensible way to approach it.Try to find a time of day when you feel less fatigued and try to do your more energy consuming tasks then.Experiment perhaps if you are unsure as to the best time of day.If you feel whacked don't fight it but meditate or lie down and relax and you will come through it.You cannot fight the fatigue monster by being aggressive in my experience but others would contradict that.It really is down to personal monitoring.Good luck and try to keep smiling and enjoy the good times when you feel more energised.

  • I can only agree with you re funding for fatigue research! Still, I've yet to start taking Plaquenil, which I really hope will work for me to some extent . As, as Tim47 says, some jobs are unavoidable and are very difficult to break up into small parts/fit within a strict pacing routine.

  • Each of us is so different under this umbrella of APS. Some of us has Lupus, some of us has Chronic Fatigue. Some of us has a host of other conditions. The fatigue can fall under different categories. If it is under Chronic Fatigue, then the pacing is vital. I don't take Plaquenil, my doctors don't feel it will help me and I agree, but I do take many supplements (vitamin B12 injections, Omega 3 oils, Co-Q-10, etc.), along with a lot of prescriptions for the many health problems. Almost every day I walk, not a lot, but I walk. That may not seem like a lot, but then my CFIDS was considered extreme. Pacing is the biggest problem, for when feeling well I can so easily overdo, even after 23 years of having this, it is hard to know. Heck!! Eating well, getting enough sleep, keeping a good attitude, all this is part of the game.

    Yes, I do wish more money be put into research, especially for APS!! What are the overlap conditions between all these conditions? Eventually they will learn more, the sooner the better!

  • Yes this is very typical for me. I've learned that I need to keep an eye on my schedule. If I have a day planned that is full (full that is for me and my APS) I must be sure to have at least a day, two is better, following so I can rest and try to regain my strength.

    Every once in a while I forget and/or I'm overly ambitious one day and the pain and fatigue that follows is just excruciating. I tell myself "lesson learned" and try to keep on top of planning and learning to say "no" when I know it's something I won't be able to do without being miserable. This cycle of fatigue and pain is why I've had to retire from practicing law or any other full- or part-time work. I never can predict the depths of the pain and fatigue an activity will cause me. Keeps my schedule light and at times it gets lonely (I live alone) but better to spend a few days alone reading, or resting, or catching up on TV, then be incapacitated with an indescribable and debilitating recovery from overexertion. As I've read on this site, pace yourself.

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