HD Disease?

[BB502]

I have been diagnosed with Hidradenitis Disease and I am in the worst stages of it I do know it's not contagious. It causes severe fatigue and pain and fevers.
It is the worst pain I have ever been in. There is no cure for it. I never heard of it before this. Along with my other health issues, I really am having a really hard time of it.

Does anyone else here have it? Please pray for DH and me, we're both in poor health. Thanks so very much for always being here for me. Betsy

If you remember. recently I wrote about our DS and Disney vacation....he still hasn't taken our call or called. He's all we have and this is making our health problems so much harder. Would you please add him to your prayers, to soften his heart?

Added note: I have been misdiagnosed for this for over two years. Have seen nine docs in all fields of medicine. Have had lesions opened and drained..have been on antibiotics steadily. Finally went to Cleveland Clinic and went to three different kind of Specialists. Was diagnosed correctly just now...I have worst stage and am on steady dose of antibiotics. Must use prescription body wash and cream $$$$ and sitz baths three times a day. It is a Chronic Disease and they are suggesting several surgeries and skin grafts. Which might result in my ending wearing a "bag". I really don't want to go through the surgeries.
I don't have a support team for emotional support and almost no family. I can't stop ccrying...don't let DH hear or see me cry, his health is too frail.
I wish my parents were alive to hug and comfort me. Thanks for letting me get this off my chest and rant. I am going to call a counselor for emotional support tomorrow. Thank you for all the support you have offered...I really appreciate it all!!!

[Okra]

BB502, I just want to send you a big but very gentle hug. And yes, I'll keep all of you in my prayers.

[BB502]

Okra wrote:
BB502, I just want to send you a big but very gentle hug. And yes, I'll keep all of you in my prayers.

Thank you kindly Okra. Betsy

[K9 Owned]

You and your DH are in my prayers as is your son.

[Connie Lea]

BB502 you and your DH are definitely in my prayers.

[seashell]

Not to be disrespectful, but your son sounds like a real jerk. I hope he realizes how much he is hurting you and your DH before it is too late. It sounds like you and your DH have some serious health problems. It would be nice if you had his emotional support. For the record, Disney would be too much even if you had wheelchairs. The crowds and the heat can be overwhelming. You are both in my prayers.

[SarasotaCook]

My friends daughter had it. She went through a few very painful years in college and early 20's. They had many diagnoses. They finally got it right.

She was heading to surgery, but a friend told her to get some tea oil I believe; or cream. I'm not passing on medical info, because I don't know; nor, will I look up advice. She went to see a nutritionalist/natural health advisor and she suggested it.

She was cured ... or in remission. It took about 4 months; and she gets occasional flare ups. She even had to be on antibiotics once because it got very bad. But she keeps it under control. She isn't cured ... but ... under control which is the best she could help for. She is now 30 and healthy.

She admits, that a very light in fat diet; and loosing weight was really the key. She exercises often to sweat out her pores, since the disease is with the sweat glands. She also get regular treatments at the spa, steam baths etc which she said has helped tremendously.

I was good friend with her Mom when she was going through this. It is miserable; and they tried a lot. It was quite a while before they took this approach.

As, I said. NO med advice; just some info on something that worked for them. Sometimes, I don't believe in all the natural meds and healing; but I take some for my rheumatoid and haven't taken a prescription in over 20 years. Just natural substitutes (and not many, just a couple); and I feel better than I did 30 years ago.

Just something to think about.

And take care of yourself; I'm so sorry you a;re going through this.

FYI, I know this is not something you ingest; she just rubs it on. It isn't a drug or pill.

[BB502]

SarasotaCook wrote:
My friends daughter had it. She went through a few very painful years in college and early 20's. They had many diagnoses. They finally got it right.

She was heading to surgery, but a friend told her to get some tea oil I believe; or cream. I'm not passing on medical info, because I don't know; nor, will I look up advice. She went to see a nutritionalist/natural health advisor and she suggested it.

She was cured ... or in remission. It took about 4 months; and she gets occasional flare ups. She even had to be on antibiotics once because it got very bad. But she keeps it under control. She isn't cured ... but ... under control which is the best she could help for. She is now 30 and healthy.

She admits, that a very light in fat diet; and loosing weight was really the key. She exercises often to sweat out her pores, since the disease is with the sweat glands. She also get regular treatments at the spa, steam baths etc which she said has helped tremendously.

I was good friend with her Mom when she was going through this. It is miserable; and they tried a lot. It was quite a while before they took this approach.

As, I said. NO med advice; just some info on something that worked for them. Sometimes, I don't believe in all the natural meds and healing; but I take some for my rheumatoid and haven't taken a prescription in over 20 years. Just natural substitutes (and not many, just a couple); and I feel better than I did 30 years ago.

Just something to think about.

And take care of yourself; I'm so sorry you a;re going through this.

FYI, I know this is not something you ingest; she just rubs it on. It isn't a drug or pill.

Thanks so much! I will look into this! Thanks for giving me hope!

[SarasotaCook]

Very welcome; I see her often and she is doing well. As I said, it isn't a drug, just a natural ointment I believe, so, I would think giving it try couldn't hurt; ask you Dr; and look into it. I'm always one that looks at all options. Never hurts to look.

I wish you the best; I remember how miserable she was; and to see her today is amazing. She works as a party planner/events coordinator, so having endless energy is a must for her, lol.

Good luck!

[Claudia Dawn]

BB - I'm lifting you, your husband and son up in prayer for strength, comfort and peace AND reconciliation. God bless you.

[seashell]

[/b] what is hd disease?

[Chef shapeweaver ©]

All my good thoughts are with you and your DH.
Gentle hugs to you

[jneen]

Sending up prayers. God is able.

[BB502]

seashell wrote:
[/b] what is hd disease?

Hi Seashell, HD is short for Hidrodenitis Suppurativa a Chronic Skin Disease.
It starts as a pea-sized cyst under the skin and acts like acne. It occurs in the sweatglands usually in the armpits, groin, under breasts and anal areas. It is mostly affecting women. It is extremely painful and dibilitating in last stages is unbearable. It starts as a small lump under the skin, which is filled with pus. As it grows larger the pus filled lesion becomes very painful. You get a fever, fatigue and chills. The lesions, burst open when full (you cannot pop them) and pus and blood drains for days or weeks. Usually when you have one, you have several in that area. As they fill up they "tunnel" or branch out deeper in the skin. They pop then you have a scar. You may not have break outs very often in the early stages...but as they progress they become more and more often and larger and deeper.Sometimes the size of baseballs, for some people. There is no cure..once you have them, you have them. There is no known cause except auto-immune people seem to get it most. Hygiene has nothing to do with it. As they "tunnel" and get deeper, you need to have them lanced open to drain. I am in the last stages and did not know what I had for years...thirteen docs couldn't figure it out...Cleveland Clinic told me what I had. The stage I am in,,,the third and final stages...I can only resort to surgeries to put stent type bridges in the tunnels, to keep them open so the staph and infection drains. They are not contagious.You have to be on a continuous routine of Antibiotics and intravenous. After surgeries, grafting of skin is needed to help aid with new skin. If the tunnels reach organs, like the bladder or bowels, then you have to have them removed and grafting skin and wear a "bag" for waste and urine. It is very painful to do anything, ride, sit, walk, etc. Hope this helps. They think I got it when I had a Kidney Disease flare up and my Fibromyalgia made my immune system so bad. Auto-Immune now. Thanks for asking.

[HalfBakedCappy]

BB502 wrote:

seashell wrote:
[/b] what is hd disease?

Hi Seashell, HD is short for Hidrodenitis Suppurativa a Chronic Skin Disease.
It starts as a pea-sized cyst under the skin and acts like acne. It occurs in the sweatglands usually in the armpits, groin, under breasts and anal areas. It is mostly affecting women. It is extremely painful and dibilitating in last stages is unbearable. It starts as a small lump under the skin, which is filled with pus. As it grows larger the pus filled lesion becomes very painful. You get a fever, fatigue and chills. The lesions, burst open when full (you cannot pop them) and pus and blood drains for days or weeks. Usually when you have one, you have several in that area. As they fill up they "tunnel" or branch out deeper in the skin. They pop then you have a scar. You may not have break outs very often in the early stages...but as they progress they become more and more often and larger and deeper.Sometimes the size of baseballs, for some people. There is no cure..once you have them, you have them. There is no known cause except auto-immune people seem to get it most. Hygiene has nothing to do with it. As they "tunnel" and get deeper, you need to have them lanced open to drain. I am in the last stages and did not know what I had for years...thirteen docs couldn't figure it out...Cleveland Clinic told me what I had. The stage I am in,,,the third and final stages...I can only resort to surgeries to put stent type bridges in the tunnels, to keep them open so the staph and infection drains. They are not contagious.You have to be on a continuous routine of Antibiotics and intravenous. After surgeries, grafting of skin is needed to help aid with new skin. If the tunnels reach organs, like the bladder or bowels, then you have to have them removed and grafting skin and wear a "bag" for waste and urine. It is very painful to do anything, ride, sit, walk, etc. Hope this helps. They think I got it when I had a Kidney Disease flare up and my Fibromyalgia made my immune system so bad. Auto-Immune now. Thanks for asking.

That sounds awful. Sending you good thoughts.