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carmen33
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Back as far as I can remember which I probably had it before this, was 14 years old, at that time I ended up in the emergency room of a local hospital with blood poisoning from using a drawing salve, had a red line from the inside of my thigh down to my knee, never was told what this was, just that there was something wrong with my blood, and to not do anything to them, just use Benedictine to clean them with and gauze to cover them, this is what i did for many years, suffering through the pain of flares, then I finally got the proper name for what was going on, and was able to do some research, found some groups, gathered more information on treating this, had a doctor put me on antibiotics, which I took for years, till I heard they really don't do any good if there isn't a infection and could cause more trouble than what they were meant to help, since you could become immune to them, and then if you really got sick and needed them, they would not work for you anymore, so I stopped taking them. from that time forward I have basically went back to what i was told years ago, I just leave them alone, but I do now use the hot compresses for helping to bring them to a head, and put gauze over them to lessen the pain of rubbing when I have to move and work, I buy the cheap triple antibiotic ointment from the local dollar general, tried the neosporin, and found for myself it to be a waste of money, even that kind that is suppose to relieve the pain. I am sensitive to the tapes we must use for bandaging, gauze pads cost a fortune, I buy those ones from the dollar store most of the time, but I have found that the gauze sponges, they sell, actually work quite well, and you can cut them to size, works out cheaper, I have also used panty liners to help cover them, they work great for the inner thigh.. I have had to take pain pills to deal with the pain at times, generally though even those don't help me much, by the time i take enough to kill the pain, I've also killed my ability to do anything else. I've not had the surgery, had only two lanced, as most of the others will break within a reasonable time on their own, with a little encouragement from a hot cloth What do you do? |
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SKing25
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This was a great post, I wonder why no one responded? Please everyone participate, any suggestion's that you have will help all of us. And I am sure by now that no one is ashamed of the disease, Right? |
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BELLA
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I have been on the antibiotics for at least 10 yrs till recently when I started getting an adverse reaction to them......... so right now I am using antibiotic cream and bathing 2x per day in epsom salt and the dreft and 3 drops tea tree oil Mine problem is I have so many and never seem to get a break, I have at least 4-6 lanced, drained and packed per month Bella
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carmen33
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Hey Bella, is the treatments you are using now working for you? I quit the antibiotic thing about 5 years ago now, I wasn't having any reaction to them, just that I didn't see any reason for treating a infection if it wasn't there. |
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hsshutterbug
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Hmm..How I was told... "You are just some woman who will walk around with alot of cysts"..so get used to it and get over it. Yes he was precious..lol. "lose the weight"..<<very insightful..but my body was always at a normal weight, if I post pics you will see how slim i was. Whenever HS came around..so did the enormous bloat..leaving it hard to lead the athletic lifestyle. "We are going to keep lancing " without pain meds or knocking me out. This was done every 3 months..for 4yrs.ouchie! Never again. "we are going to keep prescribing you antibiotics" - this didn't put a ding in my HS it made it angrier. Not too mention the after effects antibiotics had on me..gross. And the final way to treat my HS..which was my all time favorite... The shoulder shrug, then send me on may way..the same way I arrived. HS kicked a hole from the inside out, leaking all over the place and unable to cope with the pain. I was told to take over the counter meds prescribed for headaches.  How did I react? I took matters into my own hands. Rid my body of antibiotics, and the birth control pills (that prescription was various brands over the course of 22 yrs) and put good stuff in me. However other HSers have used the birth control to calm their hormones. But I am choosing to stay off them until someone can actually give me a hormonal panel then choose a birth control pill. |
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carmen33
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hey shutter, are any of these idiot doctors still breathing? Lord Woman, if you didn't kill them I would be truly surprised, lol, I know that I would have at least beat the living tar out of them, this is one of the reasons I advocate research on our part and learning everything we possibly can about our illness, we have to educate our doctors. |
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hsshutterbug
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Hello Carmen..lmao..yeah they are still breathing..sadly probably still practicing medicine as well. I was tempted to bring them closer to me.. so they could get a real look at what I was showing them...even give them a feel of what I was feeling lol. Here is the cycle for me during that 20+ yrs: Uknown bumpies show up ..I persistantly pursue it with said doctors for 6 months of the year..they get agitated as they cannot give me answers. I go home in tears and in pain with no relief. Then I drop it for 6 months. Did this method consistently ...when the New Year was upon us..just repeat! I agree with being informed patients. Most docs didn't allow for it, as their egos have to be in tact. But it is my body, my health..and I live with my body everyday...lol! I gently educate my doctor..but recently he told me ..he can't help me. This is after I turned down his prescription to Accutane. I see him once and awhile..as I search for another doctor. Now you see why I am such a preacher of good foods etc. LOL. Had to take it in my own hands. Be brave my fellow HSers. Pain does not have to be a way of life. Not sure how you coped as well..Carmen. Your story is filled with pain and frustration as well. I hope something I posted helps you. Try the turmeric pills, from a health store. This will keep all bumpies down , less inflammed. Start there. Will post in the medicine forum a script for HSers to follow. Hugs...
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carmen33
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Thanks Shutter have heard good things about the turmeric, will have to give it a try, have one that is trying to come up under the breast, right where the bottom of the bra goes, that ought to be fun, one on the breast it's self is bad enough.. with all the stress i have been under lately I am surprised I haven't gotten more. It's sad we have to be our own doctors and educate the ones that we have, I've picked out a nurse practitioner for my latest victim, lol, the doctor in the office is having to absorb his fathers patients, so she is the only one available, but he is there for consultation, as I explained to the lady on the phone, most of the time all I need is a signature on the script, with the occasional check up for whatever is going on at the time.. dropped off my records for her and filled out the new patient paperwork, will be bringing my med bottles and information on the HS when I see her for the first time on the 9th, kinda of a get to know each other meeting.. see if she wants to do the lab work I get all the time, for the HA1C for the diabetes or if she wants to schedule another appointment for that. Did find out I don't have to fast for the HA1C, just when we are doing other blood work, like the CBC. I hate having to break in a new doctor, their so hard to train, lol, but like you said about their ego's, with me they have no choice but to get the hell over it, my money and insurance spends just as well at another doctors office as theirs. Not to mention like you said, I live in my body, I know what is going on with it and most of the time have figured out what is wrong prior to even seeing them. |
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