Skin Disease Impact On Life Including Work

ResilientNeighbour7

Hello

Sorry to message again and for rushed post as I don't have enough time to share in detail llus usinh mob data as now no wifi access.

I am running late to getting out of the flat (as a non driver with no other help) but really struggling so just wanted to ask for help from community again.

My skin disease, diagnosed only as prurigo nodularis and given no long term care nor effective treatment by the rubbish dermatologists I've briefly seen, is unbearable, somehow getting worse,to point I am uncontrollably itching and feeling need go scratch in workplace surrounded by people, which is disgusting,humiliating, burning. It does not even provide momentary relief as the severity of itch is deep, widespread and extreme. I do not have white skin so it hyperpigments and looks a millions times worse. I HATE MY LIFE. 

What can I do to get better,immediate,overdue support? I ve been to GP, asked fof referall from derm they are still not even offering appointments. How many times must I ring both booking and dermatology department for response?

Just to clarify,this is not just yoru average dry,itchy, ezcema type skin,this is a digging, congested,widespread, lesions filled, chronic, non healing, itchy, painful skin and scalp that I am not coping with at all ,and no amount og skincare or antihistamines have ever helped. It truly feels and is torturous not to mention hideous.

THIS is only one of my health problema but right now is the most problematic as I type and I would appreciate support in  getting treatments as soon aa possible.

Ps all the other issues ie vicious neighbour , poverty, isolation, bereavement,  messy flat and so on still very much ongoing!

L_Volunteer

Hi @ResilientNeighbour7

Thanks for reaching out to us. I appreciate how much courage it takes to reach out for help, especially when you are struggling. I hope we are able to help and I am sorry to hear you are struggling at the moment.

It sounds really difficult that you are struggling with prurigo nodularis and not given the support you need and deserve. It sounds like this is making you feel frustrated and hate your life at the moment. When you say you are hating your life at the moment, would you like to explain what you mean by this?

Unfortunately, we are not able to provide medical advice. This means you would have to speak to your GP in the first instance. However, we can listen to you and we are hearing this is a particularly difficult time for you.

There is some information about potential treatments and support on the following websites:

• Skin Support
• Rare Diseases

I hope you might find these useful at least whilst you wait for a GP appointment.

It also sounds really difficult that you still have the other issues going on as well as this - including a vicious neighbour, poverty, isolation, bereavement, messy flat etc. How are you managing these at the moment?

Please keep us up to date with how you are doing, we are here for you 

Alex_Alumni

Hi there @ResilientNeighbour7 and thank you for reaching out. 

I'm really sorry to hear about the impact your skin condition is having on you, it must be an awful feeling. 

I hope the organisations @L_Volunteer shared with you are helpful, and I would also urge you to contact your GP surgery and raise the issue again, perhaps with a different GP.

Could you contact 111? They might be able to help you get an emergency supply of any prescribed medicine for your prurigo nodularis. I know that stress can increase the symptoms, so if you are able to explain this, they may also be able to advocate for better support for your mental health. 

The most important but hardest thing to do is to stop scratching:

• Anything you can do to take your mind off the itching will help to reduce or stop the scratching

• You may find that laying a cool damp flannel on the skin can reduce the feeling of itch. A cooled emollient (moisturiser) which has been kept in the refrigerator, or has added menthol, may also help

• Keep your bedroom cool and do not sleep with heavy or heat retaining bedclothes. If you are hot and itchy during the day a fan can help to cool the skin down

• Cotton clothing worn in layers can be better than heavier materials such as wool or synthetic products which do not absorb sweat as easily leading to overheating and itching 

I'm sorry I can't be of more help at the moment, but see if you can focus on two or three of the things on the list today, to help take your mind off the itchy sensations. 

ResilientNeighbour7

Had a few phototherapy sessions absolutely no visible or tangible improvement yet!

L_Volunteer

That sounds really frustrating @ResilientNeighbour7. Do you know what your next steps might be yet? 

ResilientNeighbour7

Hi L volunteer sorry to report that no new treatments offered nor any idea what next steps are . I don’t think the stress of where I’m living is helping . I’m so depressed right now I can’t even explain. In poverty, unemployment, no support network, subjected to a vicious neighbour downstairs , and
the other day I went to try on some clothing in shopping centrechanging room knowing  full well I can’t afford any of it nor look good, I I silently cried further more in there where I was fir at least 45 mins because not only am I skin diseased,blotchy, scarred, and ethnic minority uflinesss but I am also flat chested , flat bummed, flat bodied, unattractive. Essentially I’m the epitome of a failure at 27. I have forced myself to eat and rink as healthily as I can afford and manage and I try my utmost to honotiade everyday and sometimes I go to gyms. But I’m hideous and no better off. Women my age are in their defining decade and thriving in their prime. I have nothing.I feel cursed and trapped. Haven’t noticed any improvement still itching, aching and tired, feeling miserable, no matter what I’m trying sorry for my miserable response but this is where I get to be honest and open . As I type my pulse is extremely fast, I am zoning or want fell asleep sat where I am . How the Hell Can doctors in this stupid climate continue to neglect my cries for help ! None of this is normal! Anyway bye for now as I need to get on with my decluttering 

ResilientNeighbour7

And I’m sorry I spend so much time on here. Whilst I wouldn’t say I’ve found all the answers I need on here or anywhere else on the internet either, this is my only coping mechanism because in the real world the professionals and people in authority (ie doctors and specialists, social care council workers) are not doing anything to actually help !
I honestly can’t think of any fellow peer in such a dire state .
why is there so much wrong with me?
why does no one value me?
why am I not free unlike my free peers and others in general?

Tori_Scope

Hi @ResilientNeighbour7

Women my age are in their defining decade and thriving in their prime.

There's no real time frame on when you might be in your 'prime'. I'm a big believer that people are valuable at any age, and that growing and changing is all part of the journey

I need to get on with my decluttering 

How did the decluttering go? I'm well overdue a declutter, but it's not something I find easy to motivate myself to do!

And I’m sorry I spend so much time on here.

There's no need to apologise at all. I know that we can't give you all of the answers or solutions you need, unfortunately, but we're around to listen and chat, even if it's just to help you take your mind off of things 

why does no one value me?

I can see why you might feel this way, considering the challenges you're facing in getting the right support. But I wanted to reassure you that you absolutely have value. I'm sure many members on the community have gained a lot through reading your posts.

ResilientNeighbour7

I’m sorry to be here and to vent again but can ANYONE relate to this please so for the last 3 hours once again (and I’ve not been able to leave the vile flat  today either ) is this undying episode of severe internal pricking widespread burning itch with no relief whatsoever whatever I try 
how many more years of this do I have to endure 
and what exactly is causing these horrific experience?

Cher_Alumni

@ResilientNeighbour7 Hello there, I don't we've spoken much before so firstly it's lovely to speak!

I'm sorry you're living with chronic itching. It must be emotionally challenging to cope with and I can sense from the words you use that your mood is being impacted by it. That's totally understandable and I wondered if speaking with your GP about the way your skin condition makes you feel would be a good next step? Aside from this, have you had any luck with the suggestions above such as calling 111?

Try not to put too much pressure on yourself about your physical appearance and expectations about what you feel you should be doing. Your worth isn't based on how much you ascribe to beauty trends and the latest aesthetics or looks, it's much more than that. And having a flat bum and chest (me too!) doesn't detract from your value as a good person. Speak kindly to yourself 

We're always here if you need to chat but please do revisit the tips above about self care and specialist skin organisations. Take care.

ResilientNeighbour7

Thank you Cher for your comforting words! At the moment I’m actually under the care of a good consultant who is due to retire soon as a day patient in Nhs dermatology (weekly for phototherapy)after a very long wait.  I started about a month ago  however I don’t believe they understand just how severe my itching is & no other extensive tests have been done to try and identify what is causing the lesions & sensations! I’m noticing absolutely no difference & the team clearly don’t understand the other impacts even though I’ve politely tried to voice these. It’s absolutely disgusting what I have all over and to be honest the sensations are worse for me than the hideous appearance.  I wish I could describe the level of discomfort a lot better! I’m feeling so low but keep trying to attend the appointments since I’ve practically had to beg for these sessions (and it took me complaining to PALS and more). I’m the one going through it not them and as you can imagine their snide remarks such as ‘been having a good pick again’ aren’t always received well because often the open lesions aren’t even a result of picking but just how thin, inflamed, & extremely sensitive my skin is which means I often just see them appear without any scratching involved at all. But the digging,burning,itching,oozing,bleeding, crawling, poking of this curse is ! I wouldn’t wish this upon the worst people in the world! 
As always, this is not the only issue and amongst many difficulties I am experiencing chronic pains, severe fatigue whereby I fall asleep multiple times a day whether here in the flat or outside dropping things experiencing rapid pulse and shaking and weakness. 

It all feels and is excessive levels of suffering and I genuinely do not feel 
I struggle to type on here
also my internet wifi or broad band is ending today d
Deeply upset but genuinely thankful to have a support network on here.
I need to find at least ONE good mental health doctor and ONE good General Practitioner.
I honestly feel worse than before.
I understand life is not perfect for some of us but how can one person out up with this much without effective medical support in this day and age.
Do you know, I can’t even manage this tiny little upstairs housing association flat even though I live alone because the majority of days and nights I’m attending to this stupid disease and the exhaustion.
I think it’s call comorbidities where there is overlapping issues which I definitely have yet there really is little to no actual support in person even though I show up through exhaustion, alone but assertively, because clearly they don’t have personal experience of it, they’re just fortunate to be qualified and in work! They’ve never even referred me to a dietitian or nutritionist to try and see if any root cause food could be triggering it so I’m having to experiment still. I am honestly trying so hard to stay positive but as I type and I’ve been here about an hour again I think and as it sit here paralysed in thoughts as well as the sensations throughout my horrible diseased body I don’t feel any happiness or hope ! I am so angry, uncomfortable and disappointed to say the least that I am going through all of this at once. Anyway once the internet finishes at midnight I’ll not be able to solely rely on limited data so that’s my final rant for time being and I want to the world to know there’s a lot people are suffering with behind closed doors so never judge a book by its cover so to speak because I’m literally rotting away and to this week I had people stereotyping and discriminating me when outside & then all day and night I have the burden of this vindictive next door parasite as well still not being able to process bereavement nor having the funds to live a comfortable life! I just want this disease gone! It’s too much to bear it really is! I’m wondering if anyone else on the community has this diagnosis and if so how they are experiencing it and how do they manage life daily? 

I want a life worth living not this daily. Oh for goodness sake it’s 6pm ALREADY!

Cher_Alumni

@ResilientNeighbour7 Thanks for taking the time to reply and I'm sorry to hear things are so challenging. I'm not sure if you will manage to read this message given your broadband connection finishing but I hope you can use a local library or free wi-fi connection somewhere local.

It's good to hear that you managed to get dermatology appointments and although they might not have been effective yet in treating your condition, try not to lose heart. Perhaps take a list of things you want to express to the consultant and go through them with him next time, just so you know you've conveyed everything in your mind. I briefly had a spell of itching not so long ago and that gave me a snapshot into what you must be going through, the relentlessness is something I struggled with and so I fully 'get' your emotions. I sincerely hope you find something that will alleviate the discomfort really soon. 

Have you ever considered moving to a different GP practice or asking to swap doctors in your current surgery? This is an option if you remain unhappy with the relationship you have with your present GP. This also goes for any mental health practitioners you might be under the care of. 

In response to your last question, I'm unable to find anything else on the community who has this particular skin condition (although I know others have conditions that cause soreness and itching) - did you have a peep at the Skin Support group mentioned earlier?

Take care of yourself and try to keep us updated