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Unbearable itching - sleep deprivation and body a big wound

24 replies

Kefybaby · 09/09/2014 08:19

Posting here as, although I don't expect that people are qualified doctors, they might have some similar experience. Medical advice has not got us far to date...
My DM has been suffering with itching. She has been diagnosed with eczema but I am not convinced this is what it it or that it is being managed properly. She is in her 60s and has not had eczema up to now, although she does suffer from a number of allergies. The problem is that the itching is horrendous. She has reached a point of not having slept for weeks and her back and neck are a big wound. It is really upsetting to see her like this and be unable to help. Nothing that she has been prescribed has helped and doctors are now saying it is stress related. I am worried because with all the suffering and sleep deprivation she is now talking about how she understands people who commit suicide. She is beginning not to sound like herself and I am concerned as we have family history of depression.
Has anyone had any experience of anything similar and/ or any advice?

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Merrylegs · 09/09/2014 08:27

Have you googled anything? Do you have an idea of what you might think it is? Has she had any other tests eg blood tests? If she hasn't I would push for that tbh. Poor her, it sounds unbearable.

Kefybaby · 09/09/2014 08:38

Thanks for responding, Merry. I have been googling like mad but I have no clue what else it might be. I also concluded that she needs a blood test so told her to ask for one this morning.
I am concerned that it is some autoimmune disease and doctors are just putting it down to stress.

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gobbin · 09/09/2014 09:31

Keep at the GP until the cause is found. My lovely MIL developed photodermatosis after being prescribed penicillin (to which she is allergic) YET AGAIN despite it saying clearly in her notes that she is allergic to it.

Any form of daylight caused the rash to worsen, to the extent that she had to have a special film placed on her windows and couldn't go out during daylight hours. Unsurprisingly, she didn't live like this for long.

The cause could be something as bizarre as my MIL. Your GP is being lazy. If she had eczema then surelymsome form of standard treatment for it would give her relief, even if temporary? Make another appointment, take photos with you, document it all at home because the medics do sometimes get it wrong, as came out in my MIL's inquest.

Merrylegs · 09/09/2014 09:45

Yes, if they have only given her topical remedies it's probably time to start further investigating. DM (same age as yours) also developed unbearable itching. However she had a couple of other symptoms that made a blood test a more obvious choice (eg night sweats). Turns out she had Lymphoma. I am NOT saying this is what your DM has btw, just that a blood test can rule stuff out. (Btw DM is having treatment and doing really well so a proper diagnosis is the first step to recovery Smile)

Elibean · 09/09/2014 10:29

I would definitely push for blood tests. As well as some blood disorders, liver conditions can also cause itching - all worth checking out.

In the meantime, in case it helps - I had dreadful night itching when pg with dd2, and kept a bowl of cold water with lots of bicarb dissolved into it by the bed, with a flannel. It soothed my skin enough for me to catch a little sleep.

Your poor mother, I'm not surprised she's not sounding like herself - constant itching is a nightmare, and very depressing in itself!

TheMagicToyshop · 09/09/2014 10:34

I would insist on a dermatologist referral ASAP, the GP sounds a bit useless on this.
Is nothing giving her relief, emollient creams or baths? When I had terrible eczema I used to have soft mittens taped to my hands to at least reduce the damage I could do overnight. Or would sleeping pills help in the meantime as it sounds like the sleep deprivation is causing problems.

slamdunkdafunk · 09/09/2014 10:37

Scabies?

CMOTDibbler · 09/09/2014 10:45

I think she needs to see a dermatologist to treat the itching, and look to see what might be causing it.

In the mean time, when my mums long standing eczema went mad as she went through the menopause, a lovely german dermatologist prescribed her 1% menthol in aqueous cream (hers was made up in the pharmacy, you can also buy it as dermocool) and it was like magic

Kefybaby · 09/09/2014 12:14

Thanks so much for all the support, suggestions, and shared experiences. I really appreciate your suggestions and will consider each one of them in detail. Merry, all the best to your DM for quick recovery.
Any more ideas or accounts of experiences are more than welcome.
DM is seeing another specialist privately tomorrow. I hope they can do something to help.

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AvonCallingBarksdale · 09/09/2014 13:04

What about Urticaria? I had Chronic Urticaria (lasting more than 6 weeks, it's called Acute Urticaria if it clears up within 6 weeks). The itching from that was insane. Fexofenadine anti-hist combined with some anti-itch cream from Boots kept it at bay, and I had one course of predisolone (sp?) steroid when it got really bad.

Kefybaby · 09/09/2014 15:33

It does not look like urticaria. It's hard to tell what it does look like as there is a lot of scratching damage to the skin Sad.
Doctors have advised against cortisone as they think it is psychosomatic and, if this is the case, cortisone is apparently likely to make things worse.
I will look into the boots cream. Antihistamines seem to be helping a bit but not enough.

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slamdunkdafunk · 09/09/2014 16:21

Seriously look into scabies. That can itch so much people feel suicidal and can present atypically especially in older people. So isn't always spotted.

Kefybaby · 09/09/2014 16:35

Thanks, slamdunk. I think this is one of the things the doctor wants to test for. Apparently testing involved a very hot bath followed by a cream/ lotion that causes a burning sensation so my mum is trying to gather the mental strength to go through it. If it is scabies shouldn't another person in the family have caught it by now? It is contagious, isn't it?

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Poledra · 09/09/2014 16:37

Get her to a dermatologist. If it's eczema (and it could be!) they can prescribe treatments other than topical creams - wet wraps, phototherapy or even certain immunosuppresants.

It's bloody miserable - severe ezcema is not life-threatening or fatal but it makes the patient's life hell Sad

ProfYaffle · 09/09/2014 16:40

I had scabies once and never had a test like that. GP just gave me a lotion to put on. Has she tried a different GP?

slamdunkdafunk · 09/09/2014 16:40

Scabies can be tested for by a skin scrape - never ever heard of a hot bath as a diagnosis for it Confused

And the treatment is just full body coverage in either Derbac lotion (headlice treatment) or permethrin cream, both of which can be bought OTC - needs to be done twice at 7 day intervals IIRC.

PacificDogwood · 09/09/2014 16:43

Scabies until proven otherwise.
Seriously, get her treated for scabies.

Whether it's psychosomatic or not, or stress related or not, the scratch-itch cycles has to be broken. Short-term treatment with effective strength topical steroid and reasonable doses of antihistamines plus lots and lots of moisturisation and avoidance of anything that dries the skin further should give her some relief (no soap, no bubble bath, short baths/showers in tepid water).

Has she had bloods done?
For allergies and liver function?
Does she have a rash (other than were she has scratched herself bloody? Sad)
There is also pruritus senilis, but in her 60s your mum would be a bit young for that tbh.

Lots and lots of other possibilities, bot I'd agree that a dermatology opinion may be valuable.

Kefybaby · 09/09/2014 16:50

I cannot thank you all enough for taking the time to respond.
It sounds like the doctor my mum has been seeing to date (who is a dermatologist) has not given her the best chance to recover... She has arranged to see another specialist (private appointment). I really hope he can make a difference.

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WaffleWiffle · 09/09/2014 17:00

they think it is psychosomatic

I've had psychosomatic itchiness throughout my current pregnancy, I am still battling it.

It started early in the pregnancy and is all over, although most often my back, hands and feet. I've had all the tests and bloods. I accept that mine is psychosomatic because I had a highly anxious early pregnancy.

Do not underestimate the power of the mind in making the itch very, very real.

The bad days were horrible. I honestly sometimes wished I could scratch the baby out of me and imagined seeing myself all bloody and butchered, but perversely relieved. I would also imagine my baby in the same distress as me but unable to itch. It made me want to end the pregnancy to end the suffering Sad

I have had to do some self-psychology (your Mum could see a specialist for this if she cannot manage it herself). This began by fully accepting that it was in my mind and then developing strategies to distract myself.

I solved the issue by 2 weeks of utter exhaustion. I did not allow my brain to rest once, not at all. I moved from one task to the next. As soon as I started thinking about the itch I would change tasks and focus diligently with all my mind on something else - reading, crosswords, mumsnet (it was the reason I found this site), Sudoku, Candy Crush - anything.

The main thing was to not stop, not for a second. I became very tearful because I was so exhausted by it all. Sleeping for the first few days meant that I had to read and read until I literally passed out mid-sentence in a book. If I stopped reading while still awake (even if eyelids were drooping) then the itching thoughts came back. So I had to read and fall asleep with kindle still in hand.

I also had to stop those ideal few minutes in the morning when you wake up and have a few minutes to come around before properly waking. I had to immediately start doing something to distract from my itching thoughts.

Eventually, this relentless activity got me so, so very tired that my sleeping stopped being disrupted and I would get to sleep sooner and sleep for longer.

The improved sleep helped my daytime moods more and slowly, gradually, I didn't need to distract quite so much. I could rest my mind a bit more each day. This incidentally coincided with reaching the point in my pregnancy when I felt less anxious (23 ish weeks, when I started to consistently feel the baby move which was the reassurance I needed).

So maybe your Mum could team the distraction techniques with some stress and anxiousness reducing techniques.

I feel for your Mum, I know how all-consuming a non-medical itch is. If all tests prove negative then sleeping tablets and/or anxiety medication would probably help her. That or a very determined mind-set to overcome the silly games out mind plays on us when anxious.

Best of luck to your Mum. And sorry about the long post!

Kefybaby · 09/09/2014 22:09

Waffle, what an ordeal you've been through and how strong and tenacious you've been to overcome it on your own steam! Wow. This is indeed eye opening in terms of the games the mind can play. I had no clue... I take my hat off to you and to everyone else who has battled such debilitating itching.

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HansieLove · 10/09/2014 00:16

I hate itching. Absolutely miserable. I rinse all my clothes, towels and sheets twice. Anything that touches my body.

You have some really promising advice. The dermocool sounds really promising.

Kefybaby · 10/09/2014 16:25

Returning to update on DM's appointment with the (new) dermatologist. The specialist was upbeat about tackling this and this has also helped DM's psychological state. He stated it is a skin disease that can be exacerbated by stress (as opposed to a disease caused by stress) and he has prescribed cortisone pills and a cream (I am not sure what it is). He was shocked that his colleagues let the condition get so out of hand. Fingers crossed his approach works. Once again thanks to everyone who took the time to respond. Flowers

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Kefybaby · 11/09/2014 21:43

The pills are working a treat! A fantastic transformation already! SmileSmile

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PowerPants · 11/09/2014 22:23

Wow, Kefy, what a great result.

And WiffleWaffle, your account was very moving. I have OCD and use distraction techniques like that too.

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