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#1 Sweet

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Posted 20 October 2009 - 07:20 AM

Hi Everyone,

I have had severe overall itching off and on through my journey with CREST. I've brought it up to my rheumatologist numerous times. I'm on week 3 of wanting to tear my skin off. I saw my rheumatologist during this and he just shakes his head and says "I just don't know what to tell you about that, I don't think it's connected to your disease". I disagree. It's so bad I can't sleep. It seems to be worse where there is more hair, ie. head, pubic area, arm pits, but certainly is all over arms, legs, back, stomach etc. It's everywhere. I've tried reducing showers and baths, using warm water instead of hot, I've tried Antihistamines, lotions etc. It seems to come in cycles and when it's here it takes for a few weeks and then I don't have problems with it for months.

How many of you deal with this and what have you been told is the cause? As I nurse, I know all over body itching can be due to Kidney/liver problems. I have an appointment coming up with my primary care doctor - and this will be my main complaint!

I have checked all of my medications as well, and none of them have the "itch" side effect. Also check for lice and any other disgusting thing I can think of. grrrrrrr

Love to you all, love "itchy and scratchy"

Warm and gentle hugs,

Pamela
ISN Support Specialist
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#2 Lizbeth

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Posted 20 October 2009 - 08:13 AM

Hi
I was dianosed with Systemic sclerosis about 6 months ago and the symptoms that I find most bothersome are tight and itchy skin. I've found the following things help - don't shower more than twice a week. Wash places that might get nasty more often of course, and be sure to use a good skin cream immmediately afterward. Be careful about what soap and shampoo you use. There are some good recommendations at the Mayo Clinic site. When I'm having a really bad day I wear cotton knit pjs inside out. Then the seams don't add to the itch. I have even put on real clothes over the pjs when I have to go out for some reason (not to the Dr, of course!!) The best cream I've found is one made for soothing cows udders in New England winters!
My SSc is it's own brand - typical how non-typical we can be! All my antibody titers are negative, I have no hand problems, no internal involvement thus far. I also have severe level COPD but my lung issues have not changed much in the last 5 years so they seem not to be SSc caused. Just the awful skin stuff, all within the last 10 months. So tight my ankle, foot and knee movement is affected, so itchy as to be beyond torment sometimes. Itchy and tight both legs, moving higher all the time, entire torso, stomach, buttocks, upper right arm, lower left arm, etc. (What is left??)
Anyway, you have my sympathy because I know how miserable it can be, and I know I'm not alone in feeling for you! Hope you can use some of my suggestions. Others will add more, I'm sure.

Hugs,
Lizbeth

#3 debonair susie

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Posted 20 October 2009 - 09:27 AM

Hi Pam and Lizabeth,

Not something I would wish on anyone, that's for sure :crying:

I've had the terrible itching (winter months) due to dry skin, as you have both spoken about.
I've had it due to my Psoriasis...when there is itching internally and externally,
it's really not nice...

My skin has itched as a result of my skin becoming tauter, due to my skin involvement
...Scleroderma. When swollen or inflamed, it touches nerve endings which is not something
that's the least bit fun, either.

You both are doing what I've done...
Sweet, hopefully, you'll have some luck in getting it stopped soon.
In the meantime, here are some {{{Scratch-Scratch Hugs}}}
Special Hugs,

Susie Kraft
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#4 Shelley Ensz

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Posted 20 October 2009 - 10:37 AM

Hi Pamela,

I've gone through awful itching for various things including both diffuse scleroderma and psoriasis and also skin dryness from Sjogren's. Lizbeth's suggestions are great.

I'd just add to it that consulting a top-notch dermatologist would be called for here. They can biopsy if necessary. From the scleroderma skin tightening, I'd never itched in "hairy" areas. It's always been confined to the exact area that was busy tightening at the moment. Psoriasis, again, only where the outbreak is occurring. Sjogren's perhaps generally all over with the skin dryness, but again, not worse than other spots in the hairy areas. Thus -- consider the source, I have far less medical training than you do! -- so on top of the kidney, liver stuff, diabetes, etc. I'd also be rather tempted to more look into things like yeast/candida, allergies, that sort of thing.

Unless, heaven forbid, and very unlikely, you are getting skin tightening everywhere all at once, even in, uh, those areas, too. But, only your doctor will know for sure.

Meantime, occasionally being an itch factory myself, my heart -- and fingernails -- go out to you. I'd slather myself in Udder Cream or my favorite coconut milk cream and cover up with very soft clothing. Also, I find some relief putting those hot/cold creams for arthritis on my neck. It interrupts the pain signal from the itching, for awhile at least. But that's not getting to the bottom of it, just putting a bandaid on it.
Warm Hugs,

Shelley Ensz
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#5 Amanda Thorpe

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Posted 20 October 2009 - 10:55 AM

Hello Pam

This has to be one of the most aggrivating sclero symptoms and yes itching can be part of scleroderma, of course I don't know if yours is.

Itching was one of my first symptoms but as with Shelley it was only where the skin was involved. The itch itself was relentless and I had many a frantic night because of it. I used a steroid ointment that really helped and also found that menthol rubs for muscular aches put on the itching area helped by giving the body a different sensation to think about.

Recently I have had a bout of itching, pulled all the bed covers off at 2:30 in the morning to see if this would help and it did. I realised I used a different fabric softner and in fact I am better off not using one at all. The soft clothing worn inside out is also a good idea and yes the less you wash the less the chances for the skin to get dry and needless to say you slather yourself with moisturisers especially for itchy skin afterwards. In my early sclero days bathing/washing was done as infrequently as possible.

I do hope you find out the cause and get some relief soon.

Take care.
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#6 northendpoet

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Posted 20 October 2009 - 05:20 PM

Pam,

I noticed a few years ago that my dry skin was becoming desert dry. And in the past year I have had to a large of patch of itch for 10 months that I finally cleared up and now it's my neck and my ears. The things that didn't work on my chest/neck were: hydrocortisone cream, calamine lotion, benadryl cream, and chamomile cream. What finally worked for me is an oil. I even tried good old fashioned oatmeal packs, but that didn't work, either.

I can't imagine what you're going through. When my chest itched it was constantly somewhere between distracting and unbearable. I would try not to scratch it, then scratch until it bled. But at least I could scratch it in public! You poor thing.

If your itching has to do with nerve pain, I wonder if your doctor might have a solution like the med they use for shingles pain or something? Or maybe acupuncture could help? Just thoughts...

Wishing you a solution ASAP and some reliable relief.
Northend Poet

#7 summer

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Posted 20 October 2009 - 05:34 PM

Hi Sweet,

I also suffer from severe itching which comes in bouts.
I went to see a Dermatologist a few months ago, and got a
Biopsy done in two areas my thigh and my breast.

I went back to get my results, and it didn't show anything
significant, only lots of inflammation. I was prescribed
a very strong cream, which I doubted would work. Within
three days It was completely gone - the itching I mean.
I still have the scars though from the rash, and have been told
to use the cream for at least a month, even if things appear better.

If you want to know what the cream is, you can PM and I'll be happy
to tell you.

Good Luck

Summer

#8 Kamlesh

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Posted 20 October 2009 - 06:07 PM

Pamela,

My wonder drug for stopping itchiness is Hydroxyz HCL (suggested by Sheryl). But, my biggest problem with this drug is that it makes me very dizzy and sleepy. Minimum dose is 10 mg and even if I take tiny part (2-4 mg), still I get very dizzy.



Any one has any suggestions?


Kind regards,

Kamlesh


#9 georgieoz

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Posted 20 October 2009 - 11:31 PM

g'day pam , I was diagnosed with systemic sclero about 3 years ago and I have been itchy for most of that time , my sclero nurse told me that itchy skin is all part of sclero and there was really nothing they could do about it apart from the obvious ,warm showers not hot and a cream to keep skin moist , so like everyone else I have just scratched until I bleed ,aweful I'd rather have pain than this itch !!!! then I went into sclero renal crisis and the itch got so bad it reduced me to tears ...but now with dialisis and the sclero flare settled for the first time in years I dont itch yay !!!! ahhhhh lovely so sympathise with ya ........ hugs pam

#10 Sam

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Posted 21 October 2009 - 01:21 AM

Sweet I am going through that right now as well, You should see my skin it has all these areas where I cut the skin. I think it is scleroderma related. I do feel good when I put lotion on. But then I go through a period of time where I can't stop itiching. It has been going on for a bit. I am going to mention this to Dr. K and see what he says. He did prescribe me a steroid when I seen him last for the itching it was for only a few days worth. Maybe I should get it and see if it helps. But ask him first before I do anything.

I hope your itiching has stop. But I do know what you mean about tearing your skin off. I am wanting to do that too.
Sam

#11 Sweet

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Posted 21 October 2009 - 05:40 AM

Hi Everyone,

Thank you for all of your replies and suggestions.

What's strange about it, is there is nothing to see. No dry skin, no tightening, it's like I itch from the inside out.

I do like the thin PJ idea however, and I'll give that a try. I see my primary care physician on Monday and I hope he can shed some light on this.

I have tried meds like you described Kam, but like you, it zonks me out! I'm dizzy enough with being blond and all without getting helps with drugs! :P

Love you all.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#12 Sweet

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Posted 24 October 2009 - 12:30 PM

Hi,

At this point it looks like the itching may have been a reaction to Nizoral, an anti-fungal medication they had me on. So I'll add that to the list of other meds I'm allergic too. I did end up with a fine rash all over. Now the problem is they don't know what to do with this fungal (system) infection that I've had since January. Monday I will get the results from lab work I had done last night at the hospital, and then it looks like I'll be heading to an Infectious Disease Specialist. My primary care physician has been trying to get rid of this infection for too long. Time to go to the big guys.

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#13 WestCoast1

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Posted 26 October 2009 - 12:28 PM

Hi Pam,

Wow, I am glad to hear that you found the source, BUT now comes the work it sounds like. Sorry you have to see one more specialist. I hope that you start to feel some relief soon!

Hugs to you~
*WestCoast*

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#14 Shelley Ensz

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Posted 30 October 2009 - 11:49 AM

Hi Pam,

Wow, I'm glad you discovered the source of the itching! That had to be just awful.

Now, what have you found out with infectious disease? Have they been of any help?

I'm thinking of you and sending warm (but not scratchy) hugs your way.
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#15 Sweet

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Posted 30 October 2009 - 02:16 PM

Hi Shelley,

I haven't found out anything yet. One week and I'm still waiting for a call. Evidently the specialist are so special, they want to review your entire case before they even consider taking you. I'll call again Monday. Must be nice to run your business like you are so superior, and leave people to be miserable while you decide if they are good enough for you. :temper-tantrum:

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#16 Shelley Ensz

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Posted 30 October 2009 - 02:46 PM

Aw, Pam, come on. They aren't trying to decide if YOU are special enough (you are, you're super, we know that, so should they!), they are just trying to decide whether your BUG is special enough. One needs to have the proper germs or ailments to see infectious disease specialists.

So, they need to ask. Is your Bug unique in any way? Is it something an internist or other specialist would be equally capable of handing? Does your Bug have any special education, like an advanced degree in Antibiotic Resistance? Is your Bug properly and potentially Lethal (that is worth 10 brownie points)?

Also, and most importantly, does the Buggee (the person co-habiting with the Bug) have the proper Credentials? Meaning, does their insurance company pay promptly and without complaint or undue paperwork imposed upon said Bug Expert?

Now, would you say there is anything still Bugging you? I mean, uh, besides me?
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#17 Sweet

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Posted 02 November 2009 - 05:13 PM

Shelley, ha ha you are funny.

Actually I do have the proper germ to see them. This is their speciality. Most Infectious Disease Specialists are internists and that is the case with this group of 3. They are just so busy they can only take so many cases and therefore only take ones they feel would be interesting and out of the ordinary.

I've already seen 2 other providers that have tried for 6 weeks to get rid of it and evidently it's resistant to 3 antibiotic/anti-fungals -(everyone they tried so far), so it must be special.

I have excellent insurance so that shouldn't be a problem.....and as I type this I am still waiting. At least I'm done itching! (caused by allergic reaction to last drug they tried)
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#18 Shelley Ensz

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Posted 05 November 2009 - 03:58 PM

Hi Sweet,

You are certainly interesting and out of the ordinary (and I mean that in the best possible way) so they should see you just on that account alone.

Have you heard anything yet?
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#19 Sweet

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Posted 07 November 2009 - 02:18 PM

Believe it or not I'm still waiting. There was a glitch at my primary care physician office and the letter and chart notes won't go out until this coming Monday......
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#20 Snowbird

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Posted 19 November 2009 - 01:38 PM

Hey Sweet

It's been weeks. Did you ever get that appointment? Just wondering if it has settled down, now that they have given it so much time to do so on it's own between both offices. Humnn...maybe it's their theory, if they wait long enough, they hope it will go away! :P
Sending good wishes your way!