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Feeling defeated

Posted , 7 users are following.

RaRaMachine
RaRaMachine

I want to start on a positive note. I joined this group just a few days ago & feel like I've found people that understand. I've seen a lot of great info here, as well as, a lot new ideas and suggestions here.

I have been having issues since I was about 15. I'm 37 now. It got worse when I joined the Air Force @ 19. The uniforms are not breathable. I can't count how many Drs, & specialists I've been to, nor how many lotions & potions I've tried. I had a big break through with going gluten free, but the sores come back. I initially went gf because my daughter (then 4) kept getting mouth sores (like eczema, but not). I was almost clear for the first time since it began. I got tested for celiac 2x's, negative.

I then discovered night shades-I'm still a smoker.... Trying to quit very difficult for me-I think the things we're allergic to are often the hardest to give up. My diet (and my daughters) are nightshade free & nut free as well.

So I tried a new dermatologist & she diagnoses me w furnucles. Despite me saying HS, & the fact that in 2014, I had a biopsy sent to mayo clinic and they couldn't even diagnose it! I got meds I've had many times before & feel like I wasn't even listened to. I almost started to cry in her office.

Sooooo with this weighing heavy on me, I feel my best option is to quit smoking & see if it helps. I know nicotine replacement won't stop the sores, but could help transition easier? What else can I do that is on my own because I truly feel that's where I am. As far as diet goes, I'm willing to try anything. I'm not just fighting for myself, I'm fighting for my daughter too-she's 8 now. She's only had the mouth eczema I did ribbed earlier, but I know the painful sores are around the corner.

I sweat a lot, I have hair on my bottom. I get sores on my bottom, thighs, pits, breasts, one on my belly, & starting to get them on my head in my hair. I'm soooo depressed Ed & in pain. I will do anything I can to prevent my daughter from going through this. Has anyone had success w hair removal? It's something her father & I have discussed to help her in the future.

Much love to you all.

0 likes, 9 replies

9 Replies

  • RaRaMachine
    RaRaMachine

    Posted

    Also, is there a coo relation with joint pain & inability to loose weight? Doesn't matter what I eat or how much I excercise I stay exactly the same.

  • anthea_43210
    anthea_43210 RaRaMachine

    Posted

    Hi

    Its a terrible disease and not medical help besides meds and incisions all the time. Just had surgery on my armpit and its one week later my arm slowly getting some movement back. I'm a single Mom and its been hectic on my kids me not able to do much. Smoking yes its hard to stop but I do know it helps.

    I hope one day soon we get a break through with a cure to this because i feel at times i cant anymore.

    Please keep believing and hope that you find yourself healing thru all this not easy.

    All the best

  • crystal_08850
    crystal_08850 RaRaMachine

    Posted

    I did not have luck with laser hair removal. Spent $1000 on it! I was stage 3 at the time which later heard it doesn't help the later stages. I found remission 2 1/2 years ago by finding my food sensitivities : nightshades, coconut and nuts. Ashamed long as I don't accidentally eat some, I stay in remission. I'm very strict with my diet! Good luck on your quiting smoking!

  • kittymcd71
    kittymcd71 RaRaMachine

    Posted

    Sorry, think I sent my message before I'd finished it. I was saying that my mum has HS (very severe, she had a vulvectomy in 1988) but I haven't inherited the condition, despite being a very HAIRY woman - more so than my mum. I'm 45 and my mum's 67. I know you're worried about your daughter, and that says so much about you as parents. She's a lucky girl! She's loved, so I wouldn't worry about hair removal until or unless she shows symptoms of HS. Chances are she won't.

    What you've described about the way clinicians have treated you just breaks my heart. My mum had a consultant who said to the nurse (as if my mum was invisbible and stupid) "Well, we'll just have to do a vulvectomy". After 20 years of pain, surgery, misery, she then had a consultant who examined her, waited for her to dress, and said: "You've really suffered, haven't you?" My mum says it all got better after that ... just someone recognising what she'd been through. She says it was as simple as him looking her in the eye and showing empathy. My advice to you would be to 'embellish' the truth now ... say, "My mother had HS and ended up with a vulvecomy at the age of 40. So don't tell me I'm malingering, do something about it before that happens to me."

    Anyone who's lived with or around this condition knows it better than any doctor, or dermotologist. Call them out on it. It gets things done. I've had lumps in my groin over the years, and believe me ... GPs in the UK might not know much about HS but they sure listen when you mention it! It makes them look a bit thick, and they don't like it, so they over-compensate. With me, they say: "No, it's just a cyst, it'll clear up." And they've always been right (and I have wept with relief). But the GPs have always added, "Come and see me if it doesn't clear up." Because they don't want the shame of a mis-diagnosis. 

    This is the advice I'd give you and your daughter. Don't let them tell you it's nothing. Fight your corner, and cite the worst case scenario. You're not prepared to have a vulvectomy. Would they be? 

  • Jay-Za
    Jay-Za RaRaMachine

    Posted

    Hi there,

    Been suffering since I was 18 and I'm 35 now. I'm a smoker. Over 2 years ago me and my wife wanted to start with kids. ( I'm also a woman ) Because we did IVF and just because it's always a better example for kids we decided we needed too quit before she got pregnant. 

    We quit 3 months before she had her first repositioning.  I stopped smking for over a year and a half. I don't want to bring down your hopes but my HS got much wors. Maybe because i felt more stressfull without smoking, maybe because it was a stressfull time anyway with the IVF baby etc. 

    I never felt so tired as I did while i stopped smoking. I could sleep all day. I never had that ever before. I stopped using a nicotine spray for over a month. this helped really good for me. It was very nasty. But it helped me quit. 

    Now I smoke a sigaret now and then. Only during evening time or when being on a party. 

    I used to smoke 30 sigarets a day, now max 20 a week.

    ps. I really do think quit smoking is always better for most people. But for me it make me feel worse. 

  • RaRaMachine
    RaRaMachine

    Posted

    Thank you all so much for your kindness, insight, and support. i agree w the above

    Ve mentioned that Drs don't like to be wrong. I think western Drs are also very reluctant to diagnose a non-clinical & also untreatable disease that NO one quite understands as well. Just the ego of a lot of Drs won't allow it (of course not all, but a majority for sure.)

    I saw in another thread tumeric helped. Is that person still here? I'm about 95% certain that smoking is bad for my HS (we all know the other parts of it being bad) I understand how (gosh I can't see the names as I type-appologies) another member said that it got worse. Stress triggers a lot of us, so I totally get that. The coconut is new: I use it a lot, so I'll have to research more on that. Geeze.... It's like I can hardly eat anything as it iS.... Grrrrr ....

    • Jay-Za
      Jay-Za RaRaMachine

      Posted

      I started tumeric about 3 weeks ago. For me it really helps. My right armpit is the worst. The lumps shrank. With at least 40%. Did not had any new boils. Everything opened up after 3 hours of taking my first pill. Pain is also much less. Pain did come back a bit last week when getting my period. But still nothing compared to how it was. The first couple of days I took tumeric out of the store that you use in food. 1 spoon in warm water 2 times a day. I wanted to see if it helped before buying the capsules. Now I have capsules that also contain black pepper and ginger.
  • RaRaMachine
    RaRaMachine

    Posted

    I only took the meds to help my sores heal. There's so many and in my hair on my head now too! Gaaahhh! This sucks!

  • RaRaMachine
    RaRaMachine

    Posted

    Wow..... I've been on the antibiotics for about 3 weeks, and then Sunday my immune system totally crashed! My regular sores are better, but still there & coming up -just less. However Sunday, I got a cold sore the size of a quarter on my chin, & I'm pretty sure I had one down my esophagus too. I've never felt so completely drained, weak, & pure pain. At least the dermatologist sees that there's something underlying & I'm not just a simple case of boils.

    It really scared me with how hard I crashed. Weds I just slept all day & could barely talk. Bless my husband for taking care of me & the kids this week

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