Has Anyone Else Been Bed Bound Because Of Hs? | myHSteam

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Has Anyone Else Been Bed Bound Because Of Hs?
A myHSteam Member asked a question 💭

Does anyone else bleed out from their open lesions when they try getting up out of bed? I'm stage 3, chronic severe. I'm on a strict diet. No dairy, no red meats, no bread, no sugar or refined sugar. Im still having inflammation and can't pin point from what it's being caused.

posted March 16, 2023
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A myHSteam Member

HS is seriously misunderstood by medical professionals and it seems like they don't care or understand how it seriously affects every aspect of our lives. My heart and love goes out to each of my friends here! At least here, you know that you are understood and people do care! 🤗

posted May 16, 2023
A myHSteam Member

Hi Gabriel, yes I have been bedbound with HS, on antibiotics(not a cure) Norco, Morphine&Motrin pain management unfortunately there is no cure and cause is unknow. I was diagnosed 52 years ago. I've had surgeries daily tears, pain, embarrassment & depression BUT I am so thankful that this chronic disease now has the attention it deserves. also thankful for Humeria. I started it 4 months ago but because it did not make my boils disappear completely I decided the weekly injections were not worth it. 2 month later new painful boils popped up. I couldn't walk and
got back on the pain pills. the new boil connected with the old ones and grew to the size and shape of a pear. SO I I'm back on Humeria now. It took a week to come to a head and drain, things are under control now. Sorry I have no answers except there is nothing about our daily lives that causes this disease, there are things we can do to not irritate the areas like tight clothing and deodorant or any product on your armpits, groin, pubic area, vagina or penis. just keeping these areas clean is enough. I wish myhsteam existed years ago we all know how hard it can be talk about this disease. You have to have HS to understand. This forum is definitely a form of treatment. Gabriel you're no alone Take Care!

posted March 19, 2023
A myHSteam Member

Your welcome… you will overcome it…. I don’t have any problem or issue with taking Humira it’s been good to me so far, but I do know everybody is different.

posted March 18, 2023
A myHSteam Member

Thank you very much Natasha. Yes Ive been on humira for about 5 to six months already and also on vitamin D-3. Im on a strict diet too, no dairy, no nightshade vegetables minimized processed food. I just can't seem to pin point from what my flare-ups are being caused by. I'm not giving up though. Thank you so much for your encouraging words, greatly appreciated.

posted March 18, 2023
A myHSteam Member

Hello Gabriel… have you try Humira? I been taking it for about 2 years and it help me out a lot. I was at stage 3 of my HS and now I don’t barely get it or less I’m stressing out that play a big role in your outbreaks. I take vitamins b12, d3, zinc, fish oil, magnesium, turmeric, and multivitamins. They help out as well to keep it maintain. I don’t eat tomatoes, because I realize that was causing me to have flare ups.. something is causing you to have flare ups once you find out what it is you can control it from happen again… it take time but you have to figured out if it’s the food, clothes, lotions, or soap that is causing it to trigger so much. You will get through this just do your research and see if it change.. I’m here if you have any question. Trust me I was at stage 3 I have deep scars that will never go away, but I refuse to let this keep thinking it’s going to control my body, because it’s not.. Enough is Enough I believe in you🌺🌺🌺

posted March 18, 2023
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