Lesions and fatigue.: I'm fairly new here. Who... - Behçet's UK

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Lesions and fatigue.

Number4 profile image
6 Replies

I'm fairly new here. Who has had trouble and then success with genital lesions and bleeding along with discomfort? What worked?

Also, how common is fatigue, either troublesome or debilitating?

Thank you,

Number4

USA SEC

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Number4 profile image
Number4
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6 Replies
Papapickle profile image
Papapickle

Hi,

I suffer from lesions in my mouth recurrently that when they are bad will bleed and it’s awful. The genital ulcers I tend to use a very mild shower gel - Anything by Dove is very good and always soothes me. I tend to avoid creams but baby talc powder is good too for these.

I find avoiding alcohol, spicy foods, excessive heat, and tighter clothes help me. I have also r3cently found that nicotine helps - I use a vape which has eased the oral ulcers after reading some interesting articles online but again I wouldn’t recommend as we all know the consequences..

Hope this helps, other than an adjustment to diet and ensuring I pace myself there is little else that seems to be of great success in Addition to the above.

Take care

C

Expectthebest profile image
Expectthebest

I get Rituxan infusions -2 infusions Two weeks apart every 4 months. Great results!

Expectthebest profile image
Expectthebest

I combat fatigue by getting solid sleep- at least 8 hours. I try to avoid carbohydrates too. Reduce stress and drama from your life. It really helped me

Number4 profile image
Number4 in reply toExpectthebest

I've been on a ketogenic diet, barely, but dropped it two weeks ago due to general frustration. I didn't think it was helping BD. I've gained weight so quickly and I feel worse. Back to low carbs. I'll probably fast tomorrow to try to jump start ketosis. I read 5 by 5 on the low carbs. Sleep has long been a problem...... What's that four letter word, starts with a "D"? Discipline. It sometimes helps. Thanks for the information.

Legomum profile image
Legomum

Went to the Uk Behcet’s charity annual meeting yesterday where Dr Senusi from the London Behcet’s Centre of Excellence presented this research about fatigue in BD. They found some associations with it on blood tests. Fatigue wa common! ncbi.nlm.nih.gov/m/pubmed/3...

Stm252 profile image
Stm252

The fatigue absolutely kills me and does gonin waves. It's pretty unclear to me what triggers worse fatigue. I find that using stimulants helps me and was recommended by my Rheumatologist. So I use a small dose of Vyvanse on the days where I have long work days and break on weekends. But then I really crash on weekends and have below 0 energy. It's beyond bad. I also use essential oils during the week days as an added booster. Additional sleep unfortunately doesn't seem to make a difference.

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