Fatigue: Hi! I had joint pains since I was 1... - Behçet's UK

Behçet's UK

4,882 members4,154 posts


magician profile image

Hi! I had joint pains since I was 10. I had huge mouth ulcers since my late teens. Diagnosed with BD when I had uveitis when I was 48.

It is this year, when I turned 55, that I started feeling immense fatigue. Before this year, I could still push myself - with work, on the treadmill, etc,

My question - what is your experience with BD fatigue ? Does it go worse with time?


18 Replies

Sorry, a few more Qs:

Do you experience fatigue even without active flare?

Does the fatigue ever disapper and for how long?


goodlife profile image
goodlife in reply to magician

Sorry missed your addition. Yes I can have overwhelming fatigue without a flare and very occasionally I have a couple of days where I feel on top of the works as if never happened.... It's not often though maybe once every 3 months. It's like being high on life when it happens and I get very loud and excitable lol xx

magician profile image
magician in reply to goodlife

Thank goodness for the occasional high. We just have to enjoy those days. The memories of those highs will help us get through!

Hidden profile image

Hi, Fatigue is one of the symptoms that has been apparent pretty much from the start for me. I used to be very fit and active, worked as a Fitness Consultant in a local gym and taught aerobic classes.

I first started getting mouth ulcers and abdominal pain, along with overwhelming fatigue, doctors misdiagnosed me with having Crohns.

I won't go on with the ins and outs of how I came to get diagnosed with BD, but wanted to answer your question as best I can.

Basically fatigue is an issue for me everyday whether I am flaring or not. When I do flare fatigue gets really bad, I can have days where I can't get out of bed, because I just don't have the energy/strength.

I hope I have helped. Clare x

goodlife profile image
goodlife in reply to Hidden

Hi buddy xx

Hidden profile image
Hidden in reply to goodlife

Hi ya xx

magician profile image
magician in reply to Hidden

Hello, cg74! Yes, your response helped address my concerns about fatigue and even more - I used to be a fitness buff myself, but work got in the way, etc. Every now and then, I sort of felt guilty about it, thinking that if I stayed the fitness buff course, I might have stayed healthier longer. Since that was not the case with you, I have one less what if to think about.


Hi there, I do enjoy your posts and chatting to you.

I can't compare my journey really as I only became unwell a couple of years ago, but I would like to raise a couple of points.

My husband often points out that he too gets way more tired than he did when he was younger and to remember that although BD came along we are feeling the effects of getting older. I'm not saying that he is right (heaven forbid) but there is some truth.

I know that I have already explained that I had to leave my job this year and that hurt. I haven't had the massive improvement in health that I was hoping for but neither have a got dramatically worse.

I had an interesting chat with my rheumy who says the fatigue is more profound than we think it to be, and I am rapidly coming around to that conclusion. I often lose a couple of days to nothing but bathe, go back to sleep sit up and watch a little TV and then go and sleep most of the night. I feel a little like I am coming out of hibernation, but I do believe this offsets the worse flares. I find the fatigue is like I've been hit with a horse tranquilliser and I can barely talk let alone articulate. I am starting to think there are clues when I wake up that I am now learning not to go out that day.... And just sleep and regroup.

It sounds quite depressing but I get more and more grateful when I have a day where I go out and achieve what I wanted to.

People used to comment on my energy levels, but all my enthusiasm is still there simmering under the surface but I feel when I push myself it either ends in tears....usually mine. I know people say they won't let BD stop them! Well it doesn't stop me! as I pretty much always get what I want to get done.... But it may take me a couple of attempts rather than pushing myself when I'm not up to the task in hand and would rather do it enjoyably than feeling like death half way through.

I'm 46 by the way xx

magician profile image
magician in reply to goodlife

Hello, goodlife! I too enjoy chatting with you.

Thanks for sharing your experience. I do have days like yours, when I feel like a bear in hibernation. I am still wistfully hoping that one day, the sun will shine bright and clear and my dancing shoes will just pull my legs and feet left and right, up and about in twirls, jumps and jete.

But on some days I think I should just be thankful that the unending fatigue did not come earlier in my life. I did have bouts of fatigue when I was younger, but a few days of sleep was enough to fully recharge.

There are occasions when I do not feel so tired through the day - sort of normal, even - then the tiredness comes suddenly. Then I become brain dead and feel as if I had drank a cask of wine.

I sometimes hypothesize that the bodies of BD peeps are under immense pressure, much more than the non BD peeps - ie, in my case, I have been working till now at 55, but that would be something like a non BD person working till 80...

I have joint and muscle pains but my rheumy said that I do not have rheumatoid arthritis. Is that the case with you as well?

Like you, I do not let BD stop me - but it does slow me down. But the tortoise did beat the hare, right?

Hello my darling Magician! In answer to your question, most of my life is now plagued by the dreadful fatigue you also experience. As with Goodlife, my OH, who is 70, has also commented about the fact that age catches up with us all and so all of us get tired. I believe that the fatigue I feel is far more than that.

The heaviness of eye is matched by heaviness of limb and brain and I could no more move myself from bed or sofa than fly to the moon. Like the rest of you, some days are spent with brief spells of 'open-eyes' - I couldn't call it wakefulness - between sleep. It is not refreshing sleep, I awake just as tired as I was when I closed my eyes.

I started with migraine-type headaches at 10 years old and oral ulcers at around about the same time. I can remember my mother complaining that 'a child of your age should have far more energy' from around 12 years onwards, so it has always been with me. But up until, I would say, 5 years or so ago, there were periods of alertness between the somnolent episodes. In fact for some time I had cause to wonder if I was bipolar because of my periods of what seemed to me like mania. I now believe these manic periods were actually periods of normal wakefulness! I do wish they would come back...

Hope that helps a bit?

My Dear D,

Your sharing reassures me that the malaise that I feel is real, not imagined and not psycho somatic. Very far from consoling , but it helps to know what could lie ahead. I know you will understand and take no offence when I say that the latter sounds horrible. So horrible, that I shall do my utmost to keep whatever good health remains, for as long as possible.

While age is indeed a factor, I do think that at 55, the fatigue that I feel is more of BD's gift. I was very recently in my home country, visiting relatives and just relaxing, mainly in the city. It was nice to see them all, especially my mom - who, at 88, still attends to her business and regularly makes long trips to other parts of the country. I joined one such trip. At the end of the day, she was still full of energy, raring to chat over snacks and drinks while I was just dying to hit the sack. I evidently did not get my mother's genes.

When I was much younger, my energy level would have been plotted similarly as the comings and goings of stocks during a volatile economy - swinging extremely high and low all within the same day. This reminds me of one conference that I had to attend to, together with an assistant. I was multitasking in that conference- resource person, representative and rapporteur. At day's end, we had to stay up till the wee hours to make sure that the meeting report was ready for adoption the following day. But before we could roll sleeves, we had to be present and charming at the official dinner. By around ten pm, we were exhausted but just starting the rapporteurial work. I excused my self to take my meds. I returned with visibly higher energy level - and my assistant just had to ask if I had taken uppers!

Nowadays, a flatline or a gentle slope would best describe my energy chart. I would not have minded a flat line if the flat line were at the high end of the chart. But that is not the case and I just wish for some really joyful, high energy and cheerful days.

But in line with my determination to spite BD, I am ending this note by smiling and giving BD a really good taichi kick!

My 12 year old daughter has horrid fatigue at times. It comes on when in a flare or if she's done a bit to much at school.

As for me I was misdiagnosed from 17 as having glandular fever and other gynocologist problems that were ulcers and BD the whole time. I can only be thankful that unfortunately due to my daughter being almost exactly like my body, I was diagnosed.

I also agree with goodlifes husband, age is a poop. I use to run now have had a cough for 10 weeks & cracked 2 ribs that are killing me. As I can't get rid of the cough I keep re hurting the annoying ribs. I feel if I just bend a bit wonky I'm going to crack more. I have had to have a week off work & I just don't care. But I do miss the money.

Flying to the BD conferance in 10 days. Have been doing massive mind games with myself to see if the placibo effect works. Hmmm not so far. I just can't wait to feel well.

Hello Michja! It is heart breaking to hear about your daughter. Yes, I did survive childhood with an undiagnosed BD, but that only increases my sympathy for children with BD.

I have reached that stage when I also just could not care about work anymore. The past months have been a period of contemplation for me. My immunologist has a different view, but a loud, insistent inner voice tells me that I would go down the slippery slope if I do not succeed in avoiding big flare this time around. And that if I want to give my health a chance, I must retire while I am still not too sick. I will miss the money, maybe even the excitement of the professional life. But I just cannot think of how I would cope if I were to get sicker than I already am.

Good luck and good health to you and to your daughter!

My fatigue seems to be getting slightly worse with time though I dont have a long history with fatigue. I seem to have fallen from the high side of the energy bell curve to the lower side of the bell curve. Less than a year ago found me leaving work straight to the gym every day, practice Kung Fu for about an hour, then take two hour long high energy aerobic exercise classes. I was in great shape and those whom met me mistook me for someone 15-20 years younger. I so miss those days. Now I have issues walking up stairs and am extremely sedentary. I am really trying to muster the strength to sign up for tai chi. Shoulder surgery is coming Monday for right side. I am wondering if this is a mistake or not.

Yes, I have fatigue without an active flare, unless I am in a constant minor flare always. My fatigue goes away at times from the herbal med I ingest. That is the only time and that is nowhere near the good old days.

Hello Dan!

It looks like you and I managed to maintain good energy levels before reaching the "fatigue stage". Something to be thankful for! And perhaps some kind of indicator (wishful thinking on my part?) that we just might be able to find a way out of this fatigue.

When I go back to taichi after a lull in my practice, what I find most tiring is having to keep the knees "soft" during the practice. It does take a while to get over this stage.

If taichi is too tiring, perhaps you can try yoga? I once engaged a yoga instructor on a private basis. That was quite expensive but one time, I was awfully tired and decided to cancel the lesson at last minute, and would have meant paying for nothing. The yoga instructor was very kind and perceptive however, and introduced me to a form of yoga that is not very well known. The most popular forms of yoga are the asanas ( poses) and pranayama ( breathing). But because I was not well, she introduced me to yoga nidra - literally means yogic sleep. It is very refreshing. In addition, it affects my chi in a similar way (not exactly the same though) that taichi does.

Hmm - what makes you wonder about the wisdom of the shoulder surgery? Is it an elective procedure? If it is elective, is there still a possibility for you to mull over it?

Whatever you eventually decide, I hope that you will be very comfortable with your decision.

All the best!

For me personally, fatigue has always been a major symptom. It does fluctuate - during very bad flares just normal daily activities such as getting up feel like a massive challenge and I need a lot more rest. In between flares I have to be very careful and make sure I look after myself and balance rest and activity. I think, looking back, I may have made things worse for myself as it took so long for me to get a diagnosis of BD with lots of poor advice and wrong diagnoses before that. I got the impression that I needed to just push myself to get better and make myself do things whereas now, I'm sure this actually made things worse. When I first started on Hydroxychloroquine, I found that helped my fatigue a little bit but at that time my working diagnosis was SLE not BD however Hydroxychloroquine is sometimes used in BD and I am still taking it. I'm sure the good advice that so many give on here about listening to your body and pacing yourself and not pushing it every day help manage the fatigue too as do eating a good balance diet and a little fresh air and whatever exercise your BD will allow.

Hello, CrystalAngel!

I also went through a stage of pushing myself in the gym, in mistaken notion that it just might be what my body needed.

Although I now know better, balancing between pushing and resting remains a guesswork. I know that there is a threshold that if I cross, would make me sick and give rise to ulcerations and extreme fatigue. But that threshold seems to be ever fluctuating.



A paradox:

I somehow think that I have more good days than I had 4 years ago.

YET: The fatigue is much worse, there are periods when I do not even have the energy to watch TV. My eyes, my muscles and my brain just want to be in « rest mode ».

AND the fluctuations are much more erratic.

AND my personal thesaurus of body pains/headaches/eye pains has been increasing!

Anybody else with worse/evolving « kind » of fatigue?

What a wonderful world...

You may also like...