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Hi everyone I've just joined the group. I started getting the boils around age 18 just the odd one in my groin area. I'm 40 now and am stage 3 and it's really getting me down, the pain is unbearable! I suffer both thighs whole groin area and under both arms I am beginning to notice the odd one now in random places like maybe on my arm. I am in constant pain, they just do not seem to go away and constantly ooze. I do go to a dermatologist every 3 months who just gives me a new cream to try every time, she has said surgery isn't worth it as it is so invasive and more often doesn't work. I gave been on daily antibiotics for about 4 years don't seem to help at all.
Sometimes I can not walk and most of the time sitting is agony.
My family have suggested I apply for Dla. Has anyone tried or does anyone get it?
Thanks for any advice.
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There is no such thing as DLA now and new claimants have to make a claim for PIP (personal independence payment). This is basically the same but is harder to get than DLA. Look on the Govt. site for details of all benefits. x
Everyone is different and I am sure you have tried everything you can think of. Good luck to others who have found something which works but you obviously haven't. Put your claim in and I hope you are successful. Bev x
It was meant in the jest of 'tough love'.
I do understand the debilitating pain. I won't start explaining why so bad and you don't need to justify to me.
I have a desk job and haven't been able to sit down for 6 months, I still go in there and stand up at the desk.
It's great you've discovered the dietary changes that should help. Go down that path, take control.
Sorry again, I we didn't mean to antagonise, it was written terribly.
I agree nobody needs to justify themselves here. At the end of the day we are all in the same boat. Being stage 1 and dealing with one boil at a time is still debilitatingly painfully, the only difference being the respite in between. Unfortunately at stage 3 I'm getting no break. Like you I'll not go into all the gory details of the extent of my condition.
I too work in an office after changing jobs about 2 years ago from a very physically demanding job. I go in to work every single day putting on a smiling face to my colleagues while I'm screaming inside!
Have you tried the diet change theory? I haven't looked into it properly yet to see what it's all about.
Thanks again for the apology and good luck on your journey with HS.
Absolutely I beleive it is diet related. Same thin stage 3 and hopeless situation, just trying to handle the symptoms.
I had a pilonidal cyst removed and through that I was blasted with 10 days of intravenous antibiotics (clindamycin and amoxicilin). I was floored for 2-3 weeks with a big open wound.
When I was discharged and a week went past... I realised my HS was almost non existent. Mostly anything wrong it me had disappeared, I felt on top of the world and realised I was carrying around the infection for so long and had become used to a level of pain you know all about.
I was thinking the surgeon for all the antibiotics. 2 months clear. Then I ate a baked roasted potato. My armpit flared 12 hrs later. Oh my god! It was enough of a flare to be constant pain for 3 days, but didn't develop into what it was which hadn't stopped draining onto my work shirts for about 12 months.
I put povidine/iodine on it twice a day to make sure the open discharging tracts would not get infected. Apparently a lot of our issue is a secondary infection... So keep on top of dressing them with antibacterials.
I realised I ate potato wedges just before it flared about 2 weeks out of hospital. I asked for more clients clindamycin and they were so scared of my pilonidal wound they just gave them to me. I thought the oral dose might have just been enough to put me into a full remission. But in hindsight it was that bowl of wedges!
Two weeks later I ate some potato chips... Probably with paprika in their flavouring pretty big flare off that one, lasted 2 weeks instead of 3 days like the last two.
Now I am avoiding potato, still healing my surgical wound but no drugs (apart from vitamin C and zinc chewables). Oh and probiotics.
I am having zero issues. Until I touch a potato accidentally and it tries to kick off.. As log as I didn't have much and avoid them, it goes back down with minimal discharge.
For me it seems to be that simple. POTATOES.
Dr Danby (dermatologist) who runs the HS foundation site has published a well researched document with new evidence that dairy foods are the culprit. Pretty convincing argument.
I told him I'm a massive dairy eater and it doesn't trigger for me. He didn't dispute that and mentioned other people agreeing potato is their bit rigger.
So I'm not the sort of person that's going to go radical and eat full paleo diet based on heresay without scientific evidence.
But I was lucky for me it's simply potato's (probably their alkaloids but possibly their high GI) , for a large majority of people it seems to be dairy and high GI foods. (stuff paleo happens to exclude).
So yes definitely diet. Problem is, if I had a potato at least once a fortnight the last flare wouldn't be gone before the new one started and I could never isolate it as the cause.
The flares are an autoimmune inflammatory response... Seem to be about 12 hours after the trigger food.
So either go for the allergenic paleo diet and then add the foods you like until you flare.. Or keep a food diary. Or just try it with potato's....
I really hope you see some magic... If necessary investigate a very strong dose of intravenous antibiotics, get clear and see what triggers things. Have a think anyway,.. I definitely beleive it is a permanent genetic condition, however... Diet seems 100% responsible for the onset and symptoms. I feel things are turning the corner with the disease, quite a few people reporting their diet changes have bought it under Co tool. 10 years ago.... There's no hope. Only in the last couple of years does the medical science seem to start supporting what sufferers have started to discover
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