Flare/ tiredness

Hi everyone, thought I would have a little moan on here, as I know other people with Behcets will understand me. Was diagnosed with behcets about 15 years ago, I am now 46. For the past 2 weeks I have been having what I think is a flair up. Have had aches, pains , mouth ulcers .... but the worst thing is the fatigue and tiredness. Can't stop sleeping and am probably sleeping about 15 hours a day. I am usually pretty active, and this is really upsetting me, actually typing this having a few tears, all my family say, teenage boys, is your lazy, they just don't understand. Really getting me down and I feel quite depressed about it all xxxxxx

8 Replies

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  • No, no you are not alone and we all go through these phases. Since 20th December and still now I have been unwell and falling asleep all the time. Completely ruined Xmas and New Year. Luckily my family after 30 years plus know and understand. I think our bodies are possibly trying to fight off a flare up and hence the tiredness. There really is nothing we can do about and worrying, getting upset and people telling us to get our act together don't help at all in fact it makes things worse . It is a piece of the disease and it is normal, I should know after over 30 years of BD.

    Please show this email to your family. I know it's difficult for them to understand but if they don't then they are going to make you feel more poorly.

    Hugs

    Billi

  • Yes tiredness. It is awful. And yes peopke just don't understand. So frustrating. But what about a medication change??

    There are a variety of meds you can take for Behcet's these days. I am currently in remission after a long haul with interferon alpha. I would recommend it to anyone. Completely changed my life.

    When I was initially diagnosed with this my doctor was on the verge of diagnosing chronic fatigue syndrome zi was so exhausted all the time. I totally sympathise with you. Your family need to read about this disease and be more understanding of what is going on for you. X

  • I was just the same a while back. I was advised by another member on here to cut out sugar. This also means starchy carbs to an extent, and of course alcohol. I was inadvertently having too much sugar. I noticed a difference within a couple of days. Be careful with fruit and some veg, a quick look on the internet will tell you what is high in sugar. It's worth a try.

    Good luck x

  • the fatigue is unreal. i too also slept the majority of my day away along with frequent fall asleep during the day. the stress of feeling misunderstood from your family doesn't help. you said your teenage boys- do you have a husband or sister or brother that is supportive of you? are you on medicines? assess what physical and mental stressors you've been experiencing the last few weeks or months. you say you're typically really active and i get that- and in my opinion and from experience- i think you just plain old "overdid it." stay up on sleep, eat very healthy(when you have the energy- microwave some veggies or eat them raw) and know you are not alone. you'll pull through the second you start focusing on your recovery and not your boys-they'll understand when they're older. keep us posted. xoxo

  • Please don't beat up on yourself fir this! A lot of us experience this kind of fatigue and really the only answer is to go to bed. When you are feeling well, you can gently work on your fitness level but you will still not have the energy you once had. Please do not let people make you feel inferior because you have an illness; it is their ignorance not your inferiority!!

  • Thank you everyone for replying, it makes me feel better knowing I am not the only one . I have my clinic at St Thomas's tomorrow so I am going to discuss things with them. Went to bed at 10 last night, just got up 1.15, half the day gone😬 So annoying, sure if I layed down I would fall asleep again. But as I said , thank you , people replying to me has lifted my spirits , just knowing I am not alone xx😀

  • I'm sorry, I'm dealing with this right now....I just want the pain to stop

  • The fatigue is devastating, isn't it? And unfortunately people don't really seem to understand how debilitating it is unless you have it, especially since you can't see fatigue. But hang in there buddy, we are all here for you!

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