Has anyone applied for Dla?

Skin, nail and hair health
1

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.

2

Go look uo the rest of the posts that discuss nightshade foods. Obv, antibiotics aren't the solution or u need to switch them, but u should have them drained and packed. U will never get any relief like this.

3

Hi I have heard of someone on here who received disability for HS.  It is not the illness itself which qualifies you but how it affects you.  

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

 

4

I'm 40 and sound slide a I have HS a lot worse than yours Andy, claiming disability has never crossed my mind. Its more about working out how to live with it productively. And with all the recent social media reports, people are gaining control back through their diet.

5

I have noticed many blogs on cutting out nightshades. I am about to start cutting them out and keep a journal to see if this affects me. Antibiotics will not work for me as I have allergies to almost everthing. I was in my 20's and had just given birth to my son when I became aware of HS. I have had it for 20 yrs and though a mild case, my skin is iritated by the constant use of bandages. I do feel that yea tree oil applied directly on any boil does dry it out quick. But of course they come back. I have had 1 surgically removed and it's the same one I have had for years. It just came back after a chunk of flesh was removed. Stress is a huge culprit. Hoping the change in diet will make a significant difference!

6

I joined this group thinking at last people that understand about HS. I have to say your reply made me feel like all those times I've been to the GPs and even the dermatologist who just give you a patronising look and throw another cream and new antibiotic to try, they don't even look at them. For you to say yours sounds so much worse than mine!! How do you know that?? You don't know me or see how HS is effecting me..... I thought I would have understanding here of the shear pain this causes. I didn't realise it was a competition. I am stage 3 don't think it gets much worse than that! Also to say O I've never considered dla again you don't know me I am not a scrounger I have worked from I was 13 years old I have never ever claimed in my life. I work full time run a house and raise my children, I'm no slacker but Hs is having an impact on me. My husband brought the subject of dla up to me as he can see how this is effecting me on a daily basis. I was only asking if anyone has claimed as I certainly don't want a battle on my hands. I've read through alot of the posts on here and have found a lot of information I'd never heard of so thanks everyone but unfortunately looks like this is not the place for me.

7

Hi Andy you don't need to justify yourself to anyone.   I at least understand how difficult it is to work when your HS is as bad as yours.   I don't know how anyone can 'work out how to live with it productively'.  Even at my level which is stage 1 there were times I struggled to get in to work so I totally get it if you can't.   Sometimes nothing works,  not diet,  ab's or anything and HS as it's worst is very disabling.   

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

8

Thanks Bev, I really appreciate that. Yes unfortunately so far nothing is working for me. I'm having a really bad patch at the moment with multiple boils that seem to be growing by the second and then the lovely long term oozing ones! I literally can not move this week. I have found in the past that antibacterial soap helps a little so I've stocked up on that and am also trying tea tree wipes and essential oil to try and get some relief. Im having to keep them covered too which I find tough as with so much scarring and affected areas the tape really irritates, but hey how! Thanks again for your support x

9

Hi Andypandy sorry I didn't mean to cause offence. I wrote that response terribly.

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.

10

Thank you for the apology.

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.

11

Hi andypandy, Thanks for accepting the apology a little.

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

12

If a flare begins I not only start covering it it iodine to stop secondary infection, I also start having 2 over the counter antiinflammatories morning and night. Anything to reduce the inflammation and prevent infection.

13

Hi every one all of us who have this condition only know the extent of how much we suffer. Since i was diagnosed with this 4 yrs ago i have had a lot of flares up both arm pits are cover in scars. Due to having them cut open and drained then packed constant anitbotitcs over the years. Which i ended up seeing a gastro consutlant due to them causing problems with stomach and bowels. I take a probtitic daily which i got off amazon. In december i ended up at my local a and e department there wanted to put me under to do one but i had allready eaten so i let them do it under local. Also iv drip of co amoxickav . Then to the doctoss to have it packed. Any way about 2 weeks later i coud not left the armpit up i was in extreme pain one had come up about 5 times the size of the previous one it was like a tennis ball. I go to the a and e again the nurse was so rude iwas so upset she said oh i seen you quite a lot latley . She said to me i can run blood tests and get a surgeon if i wanted basically made out that it was done to me and i was wasting her time so off i go with more antibotics and co comadol. I hadnt slept for 3/4 because of the pain the nurse had me in tears cause of her rudeness. Any way got up the next day on a weekend my partner look at it and said phone 111 now had to go straight which is in my local hospital right next to a and e rush straight through by gp straight blood tests and drip and straight through to theatre. If that nurse waz on duty that day i would of said something cause of how she teeated me the day before. The surgeon was nice but anther nurse was quite rude people have no idea how we suffer. Had to be kept in overnight the fluid was infected back and forth to gps having it packed .in the end i was some depressed going in there everyday we got all the bits and was packing and cleaning it at home. It spilt back open twice in this time as i thought it was healing. I also suffer from anxity and had a breakdown back in2015 on antidepressents constent panic attacks. Still a nervous wreck sorry due to a lot of upset over the years .