I am destroyed

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I am destroyed

Posted by Qinetiq on 25th April 2012 06:04PM

Plz can someone offer me some advice, it started on my feet........diagnosed as athletes foot.........spread to my hands..........now it was eczema.......now at last I saw a dermatologist and it is psoriasis. I am now unable to walk because of the pain of the open wounds, it terrifies me to try and get out of bed in a morning, the pain just makes my legs buckle, my hands make me look like a freak..........this is covering 80% of my body

This is terrifying

Q

Crying and scared

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  • It is scary and it makes us all…

    Posted by michaelswims on 25th April 2012 09:04PM

    It is scary and it makes us all cry sometimes, so don't feel that you are alone - there is help.
    It sounds like your symptoms are fairly recent (or only recently diagnosed) so your dermatologist will need some time to assess your condition and find an appropriate course of treatment.
    As you will see in these posts, there are many variations of psoriasis and just as many treatments, so there is one for you too.
    Please try to bear in mind that your medical team will be looking to help you in the immediate and longer term.

    Keep in contact with your doctors and make them aware of any changes in your condition.

    I hope this post helps and that your condition improves soon. Please let us know how you are getting on
    All the best
    Michaelswims

  • I am still working so so hard to…

    Posted by Qinetiq on 28th April 2012 03:04PM

    I am still working so so hard to try and fix my body.....hands and feet still a huge mess......thank you so so much for your words of support Michael, it means a lot.

    I will not be beaten by this, I will keep fighting on........(here is me typing wrapped in cling film)

    I have found the right doctor now............the others were dreadful.

    Still crying

    Q

  • I have also plucked up the balls to…

    Posted by Qinetiq on 28th April 2012 04:04PM

    I have also plucked up the balls to wear gloves to work.........makes a big difference, embarrassing at first, sod them, i need to fix my hands. Fill them with Clobetasol and Epaderm, works well

    Q

  • Hi Q Glad to hear you are getting…

    Posted by michaelswims on 30th April 2012 05:04PM

    Hi Q

    Glad to hear you are getting somewhere with your treatment and have found a doctor who you can get along with.

    Hopefully over the coming weeks you will start to see (and feel) an improvement.

    Regards

    Michaelswims

  • Hey Q! I guess we're all here for…

    Posted by Paddyellis on 26th June 2012 04:06PM

    Hey Q!

    I guess we're all here for the same reason, I'm quiet new to this but I find just reading other peoples comments usefull and seeing how other people are dealing with it! Knowing your not the only one is infact one of the best comforts (i find) !!!

    I've used several steroids creams from my doctor but i dont seen lasting effects it always seems to creep back but ive been using a new cream. the brand names epionce. its really hard to come by in the UK!! I get it off a website that ships in europe. You have to have a consultation to get it but it dont take long. You can ask a doctor questions regarding it too.

    the prod i use is their medical barrier cream!!

    They have on going discount codes so you can use mine if you like (and anyone else reading) its not much but its something after all the money ive spent!! >> al46re

    beauty-product-online.co.uk (id check the co.uk or .com on google )

    Let me know what you think if you use it


  • Hello 'Qinetiq' - stay calm! Try treatments best…

    Posted by janetsmith on 27th June 2012 10:06PM

    Hello 'Qinetiq' - stay calm! Try treatments best for you but beware of a lot of things your derm will give you. I've had pso for over 30 years and many dermalogoist suggest creams didn't do me much help!

    Very interesting that I should stumble across 'paddyellis' comment re Epionce. I've been using that for a few years. Derms do not prescribe you it and you do have to seek it yourself. Luckily I have a contact in the US who ships it too me but I've just checked out the website the man recommened and it is the correct products.

    I used the Epionce barrier cream along with a cleanser.
    Google the brand name alongside psorisis there may be some information. I've researched many skincare lines for pso and Epionce is unique in its ability to repair and maintain the skin BARRIER..

    Good luck and try things by word of mouth then use your derm as a last resort. Epione is tromendous!

    Keep us posted on your journey and remember confidence shins brighter than anything and is FREE!

  • Hey Q here, Ive been on narrowband UVB…

    Posted by Qinetiq on 4th July 2012 05:07PM

    Hey Q here,
    Ive been on narrowband UVB therapy for the past 4 weeks, it has cleared up my torso but my hands and feet are still a mess - be warned, anyone taking on this therapy has to be seriously committed, 3 times a week for 8 weeks to be effective. I still use Dermovate on my hands and feet twice a day, does not seem to do much, just prolongs the gap between collapses - and they are proper collapses, limping through pain of fissures on feet etc. Its the hands that bother me most..........my job involves a lot of customer / supplier meeting.............makes you so so so self conscience of shaking hands etc.

    Just thought I would share my experiences so far.

    Cheer up all

    Q

  • Hey Q, I too have it on my…

    Posted by Sarah760 on 2nd August 2012 04:08PM

    Hey Q,

    I too have it on my feet and it's so frustrating! I find unless I sleep with moisture socks on and a thick layer of e45, it can take me up to 5 mins to get out of bed! I hate nipping to the loo in the middle of the night as with all my umphing and moaning I always wake up my partner and then by the time I get back to bed, they are throbbing from the walk!.

    I sleep with a fan on the floor on my side of the bed, if in the night they start to itch or throb, I find the cool air helps alot.

    My p is now kindly traveling all up my legs and it makes finding shoes a pain as my feet and ankles swell.

    You are not a freak I promise.

    Sarah x

  • Hi q, has your skin got any better?…

    Posted by kirsty on 6th August 2012 01:08AM

    Hi q, has your skin got any better? When i first had p like you most of my body was covered, its a horrible thing but things wilk get better. Ive had it for 10 years and two weeks ago came out of hospital for the 6th time with my skin. If your new to all this i would recommend the cream 50 50 its liquid paraffin and white soft parrafin, its very greasy so wear old clothes but it will soothe your skin also maybe ask your doctor for dovonex put it on first wait 20 mins and then put 50 50 on. Take a week off work and rest at home, the stress of work will only make your skin worse.
    If your skin doesnt get any better i would go to a and e, i had to last time and got admitted. If you dont fancy that ask your doc about esoin cream its bright pink and will turn your skin pink but its amazing stuff. I hope this helps, stay strong and keep calm. Skin is an amazing thing and does get better!
    Kirsty

  • Hi everyone, Q here just to give you…

    Posted by Qinetiq on 26th August 2012 09:08AM

    Hi everyone, Q here just to give you an update on where I am - I wish I could say everything is OK but unfortunately things took a turn for the worse.

    I have now completed 8 weeks of narrow band UVB - it worked to an extent but the damage it potentially does to your work / social life being in hospital 3 times a week is severe.

    Next plan was to try PUVA, received my first treatment on Friday 3rd August - by Sunday I was in A & E wrapped in cling film with 2nd degree burns - its now the 26th August and am fit enough to go back to work next week. I have not been back to hospital since having my burns treated and have no intention to. Anyone that has PUVA - please be aware what it can cause.

    Keep well all

    Q

  • It's been a while since you posted -…

    Posted by helenclements on 26th November 2012 05:11PM

    It's been a while since you posted - and I very much hope you've seen some improvement since the summer.

    I just wanted to offer my support and add another voice to let you know you're not alone.

    I suffered for very severe hand and foot psoriasis for many years, and suffered the excrutiating pain that comes with this. I was unable to wash or dress myself for several years - only keeping my job with the help of family who rallied round when I'd get home and literally collapse with blood soaked gloves and socks.

    I tried every cream going, PUVA and eventually methotrexate, which did give me 100% clearance but horrible side effects that meant I was taken off it after 18 months with the P returning in full force within the year.

    What eventually put me into prolonged remission (its been 3 years now and at their worst my hands just look a bit dry and red) was being put on some very strong antibiotics during various hospitals stays (and then as an out patient) over a year. I was in hospital due to severe cellulitis (deep tissue infection) in my leg - with the infection having got in via all the cracks on my feet from the p. The anti-biotics werent intended for treating the P, but in speaking to my dermatologist after the fact, she told me they'd found MRSA on my hands (not that they ever told me at the time) and her thought was that I'd had a recurring infection in my p that had prevented all but the methotrexate working. With the infection truly beaten - the steroid creams actually worked - and by keeping on top of even small patches I've prevented the cycle of p, cracks, infection, worse p etc truly taking hold again.

    My advice would be to push for something like MTX, or a biological - something that's going to really stamp on the p and allow healing to occur - whilst at the same time becoming super vigilant about hygiene and infection.

  • iv had psoriasis for years and had every…

    Posted by itworkedforme on 16th December 2012 07:12PM

    iv had psoriasis for years and had every cream, gone to hot climates, tried herbs, uv treatment,green tea ,nothing worked.then i read a mother saying that her and her small child had psoriasis bad,and went on to say,that nothing worked,untill someone told her to try cutting out wheat and gluten.she said it was remarkable and their psoriasis went permanently! iv tried loads of times to give up wheat and gluten but never got past a couple of days.but after reading what this mother said,i decided to stick to a completely wheat and gluten free diet.i can not believe it,im into my second week of wheat and gluten free and my psoriasis is almost completely gone now,after just two weeks! i felt i had to join up here today to just let every one know and hope it works for them too.funnily enough,i used to notice that my psoriasids got worse when i had pies or cornish pasties and bread etc, now i mknow why! and the good thing is that all the supermarkets now stock loads of wheat and gluten free products. try it for two weeks, i really hope it works for you too.

  • Hey Q ur not the only one wrapped…

    Posted by Miss D on 26th December 2012 05:12PM

    Hey Q ur not the only one wrapped up in cling film takes a bit longer to get the words right lol keep having to delete and come again I also feel sometimes just to cry but I guess im a hider, I've worn purple gloves whilst going on buses as not to infect the open sores. one day in the school play ground I saw a child staring at my hands and then asked his mum why my hands were burnt (cover face) erm yeh I've had it all said to me some people are just so nasty out there

  • Hi Q, I'm a 20 year old bloke…

    Posted by Lewis Timbrell on 9th January 2013 10:01PM

    Hi Q,

    I'm a 20 year old bloke & my life has gone to pot because of Psoriasis in the last 3 years.

    A little slice of heaven I have found for your whole body is Dr.Organic Manuka Honey. There's a massive range from body creams (amazing) to hand soap.

    Take a look, try it & let us know how u go.

    Onwards & upwards

  • Hi Q, don't cry, don;t be desperate. We've…

    Posted by PrisK on 10th January 2013 11:01AM

    Hi Q,

    don't cry, don;t be desperate. We've all been there, and we know what it feels like, but now that you;ve been diagnosed you can work on getting better! Always stay posiive! Have you discussed the options for UV therapy with your doctor? That's the one treatment that helped me reduce my psoriasis to much smaller areas of my body. All the best, and chin up!

    PrisK x

  • Hi Qinetiq, Hope you're making some progress with…

    Posted by pinky on 4th February 2013 01:02PM

    Hi Qinetiq,

    Hope you're making some progress with your treatment. I was diagnosed at 3 months old and went through school with visible p - not fun. Generally my p is much more under control these days but I have noticed that I am VERY sensitve to household chemicals (cleaning products, air fresheners, ...). A couple of years ago I changed washing up liquid without really thinking about it. The effect on my face in particular was pretty dramatic: people thought I had been burned . Eventually realised about the washing up liquid and stopped using it. Things calmed down. Watch out for unexpected chemicals, especially anything perfumed! And good luck to everyone.

  • Whoever suggested Epederm, that's a complete gem! When…

    Posted by bizabella on 21st February 2013 05:02PM

    Whoever suggested Epederm, that's a complete gem! When you've got your feet and hands free in front of the tv, lather your problem areas in Epederm OINTMENT (perhaps mixed with a little ordinary water to make it softer) - literally apply a good cm to areas, the water mix feels really nice, soft and soothing - and put on un-dyed cotton clothes (gloves, socks, long sleeve cotton tee-shirts ect) which you don't mind putting in the wash afterwards. It sounds like you're fairly new, so I hope I can remind you without sounding too patronising to use non-bio washing products and avoid fabric softener!!
    I was sorry to read your update, I wish I could help, all the best luck.
    PS - Also, lots of people say it, but it has really helped me to move my bed away from the radiator, remove the rug/carpet from my room and not allow the pets into it, or hold them often.

  • Hello, Very sorry to hear about your stress.…

    Posted by stevesky on 27th March 2013 11:03PM

    Hello,
    Very sorry to hear about your stress. I've had psoriasis for 36 years and never joined this site before. I just did to reply to your post as I really felt for you. I'm going to post this in other places here with the same advice to different sufferers, as anyone here will tell you who has lived through the 'psoriasis life', hassle at school, persecution at work, comments in public... and don't even get me started on relationship... the fear of having to be naked or be touched or have a girl run their fingers through your hair or stroke your body for the first time... well, the point is.. many here of the older generation will have been through all of this... People will talk about creams, they will talk about diets etc etc but I would just say this... If you are totally totally fed up with psoriasis the VERY BEST thing you can do (in my opinion) is book yourself a 4 week (minimum) holiday in the hottest place you can afford near the ocean and swim and sunbathe and swim and sunbathe every single day all day in the salty water. I have never met anyone in 35 years who has not had this clear up their psoriasis in every area. It is the only known safe cure (temporary) to man. For me it was incredible to see my body (was 80% covered) clear for the first time since I was 7 years old and gave me the strength to carry on. It is like wiping the slate clean and giving you a few months at least of normal life every year. Then when you come back it just gets more and more easy to manage. I am convinced that this procedure has enabled me to live a comparatively psoriasis free life for the the last 25 years. I have some in my scalp, elbows and knees and some in my ears, which is manageable, but I urge you to try this. At the very least it will make your psoriasis manageable and give you much needed pain relief. Good luck and like many other people will say here, it gets better with time. All the best.

  • Hello I have has this condition for a…

    Posted by gail riley on 28th April 2013 02:04PM

    Hello

    I have has this condition for a long time sometimes it can be very painful too. To soften the skin have a nice warm bath using soap. Then once dry use olive all on your body and wrap your affected areas with cling film for a couple of hours. This wll take away the pain in between treatments and make you more comfortable.

    Hope tis helps.

  • hi my name is gerry and im new…

    Posted by gerry on 14th September 2013 12:09PM

    hi my name is gerry and im new to this site. i also have been diagnosed with severe p on my hands and feet. ive had it now for approx 3 years. i have tried steriod creams and been for puva treatment 15 times. i found the puva treatment did nothing to help but felt like my hands had been set a light after treatments. i kept with it for as long as i could as the nurses told me it would probably get worse before it got better. i have been prescribed tegaderm dressings to go on my feet as they r to painfull to walk on without.them. my hands are covered in cuts and splits that make it really hard to do anything and i wear gloves at all times. i have been prescribed neotigason capsules 10mg but are worried about starting them as have awful side effects. wondered if anyone has taken them and how they found them. also do symptoms return when stop taking them. really getting me down and feel i have no real quality of life. please help gerry

  • Hi Gerry In in the same boat as…

    Posted by JoeMcD1888 on 22nd September 2013 11:09AM

    Hi Gerry

    In in the same boat as you. It's a total nightmare. I have been a military copper , a md and now as dad and I can safely say the only thing that beats me is the fe@in p. People underestimate just how debilitating and soul destroying it can be. I genuine couldn't care less about people's sideways stares , they aren't my type of people in the first place. But that I do care about is not being able to take my son to the pool or the beach. It's just got too widespread and I don't want him picking up on the grief.
    Gerry. Why don't you try gluten free with me for 2 weeks- it can't hurt - no cheating full on ? And topically I have hair started using glycerin and coconut oil 50/50 )it should be witch hazel but I can t get here in HK). The glycerin has made an immediate impact , no cracking and I'm not sweeping half a tom of myself off the floor daily - put it in a water spray/mist bottle to apply and just be aware its messy bit not too bad so just let it dry in or put on old clothes. I'm starting tomorrow Monday - fancy giving it go?
    Joe

  • hi joe, its gerry thank you for getting…

    Posted by gerry on 28th September 2013 09:09PM

    hi joe, its gerry thank you for getting in touch. sorry for delay at getting back. i am trying with the gluton free diet [cant believe its in everything] and given up wheat. how is it going for you have you noticed any improvement so far? will try the glycerine and coconut as well. early days for me with diet change so not noticed any improvement so far. will keep you posted how i get on. thanks and keep in touch gerry

  • This was me for 7 years!! My hands…

    Posted by Liza246 on 26th November 2013 10:11PM

    This was me for 7 years!! My hands were ridiculous with it and my feet were sore but bad on legs and elbows. I tried light treatment which worked but came back straight away same with steroid creams.

    I started using bold 2 in 1 the new one last month lavender smell and psorisis totally gone!

    Give it a try. I washed my bedding I the new stuff and noticed less itchy next day then within 4 weeks honestly gone. Fingers crossed this continues!
    Liza x

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