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Captain_My_Captain

771d

How do you deal with constant battle of pain and Fatigue while trying to maintain working, Family and other daily activities?

Top reply
    • Stimpy

      765d

      @CrazyHairHappyMama I agree with you. I also feel very lonely and that not even my family members don't understand how hard this condition is. Right now my liver enzymes are higher than ever and my Rheumatologist told me I can't take anything for pain specially Acetaminophen or Ibuprofen.... Sometimes I also feels that my NP doesn't understand how I feel and under estimate my symptoms, specially the mental fogs.

    • CrazyHairHappyMama

      768d

      Stimpy I feel the same. I’m glad I’m not alone. It gets very lonely some times. I just try to keep a routine, low stress and a lot of rest. One of my drs refused to diagnose me with Behcets because it’s so rare. But my Rhuematolgist confirmed it is Behcets. Sometimes drs can’t think outside the box and only depend on books. If there isn’t a lot of book information about a disease, we are on our own. I live in the States, Ohionto be exact so it isn’t ideal here either.

      • Stimpy

        765d

        @CrazyHairHappyMama I agree with you. I also feel very lonely and that not even my family members don't understand how hard this condition is. Right now my liver enzymes are higher than ever and my Rheumatologist told me I can't take anything for pain specially Acetaminophen or Ibuprofen.... Sometimes I also feels that my NP doesn't understand how I feel and under estimate my symptoms, specially the mental fogs.

    • Stimpy

      769d

      Please excuse me for the orthography 🙌

    • Stimpy

      769d

      Hi!, for me pain have more than one connotation, besides that is hard to sleep and stand up from bed due o my articulations Inflammation I can focus on my work (I work in a hybrid setting), this will lead me to feel anxious and sometimes depressed because I felt I'm not the same person when I'm having flare ups... it's sad and frustrating at the same time. People may see myself and they said "but you look normal, you don't look you are sick or in pain". At least where I live Medical Society doesn't know much about this condition. I was said last week that I should be proud that I'm not having the ulcers when I'm having flair ups, that I should learn to be positive and that there are people that are worst than me when I asl a Medical provider what should I do because I can't think correctly, I feel exhausted, I'm not sleeping well, I barely have energy to go forward with the day, I barely eat because after I prep my meals and try eat I feel nauseas. Guys I feel your pain and hopefully together as a group could better assist each other with some mechanism or ways that works better for you when you are having a flare up. May God help us feel well soon.!🙏

    • CrazyHairHappyMama

      770d

      This is so hard. First I work from home. That has helped. I also, if I am having a really bad day, will clock out and lay down for awhile to gain some energy back. As sort of a maintenance I try and eat good and drink water but, eating good is hard when you feel so crappy. On good days I take a 15 min walk. But if I am feeling bad I don’t push myself. It’s really just learning what your body needs and what it responds to. There isn’t many of us with Behcets.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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