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Nagging Itching

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#1 marsha

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Posted 22 April 2013 - 05:42 PM

I hope this finds everyone warm and happy. :)

 

I've had a pretty good winter. I have had terrible terrible itching the past couple of months. It seems to be on my back, hips, the scar from my C Sections and legs. It is driving me nuts.  I thought maybe I was over washing so I have been only showering every other day and drowning myself in cream.

 

Does anyone have any thoughts or advice on relief of this? And is this something that will come and go over my lifetime? I am 5 years into my diagnosis.
thanks everyone.

Marsha



#2 Shelley Ensz

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Posted 22 April 2013 - 07:20 PM

Hi Marsha,

 

Here's the tricky thing about this. With scleroderma, we can get dry skin just like anyone else and of course it can be caused by weather (including the drying effects of heaters), soaps that strip the oils from our skin instead of replenishing it, etc.  It could be as simple as the water softener running out of salt. See Causes of Dry Skin by Mayo Clinic.

 

We can also can get itching and other odd skin sensations when we are experiencing skin tightening and hardening.

 

And, of course, we can also get very dry skin and skin fibrosis at the same time.

 

The only way to know for sure what is going on is to consult your doctor, or go straight to your dermatologist (if your health plan allows, and if your dermatologist is savvy about scleroderma.)

 

If you are confident that it is "only" dry skin in your situation, Sweet recently started a thread here about Safflower Oil for Dry Skin, which might be something you might like to try. You could even do an experiment for us and apply safflower oil on one side and your regular cream on the other, and see if it makes any difference for you.

 

The important thing here is that if you don't know the difference yet between the feeling of the skin fibrosis process and regular dry skin, you could easily mistake one for the other.

 

:emoticons-group-hug:


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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.

#3 Joelf

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Posted 22 April 2013 - 10:26 PM

Hi Marsha,

 

I'm so sorry to hear that you're suffering with terrible itching; it must drive you mad and I really sympathise! My mother has periods of bad itching and I know she finds it very debilitating.

 

I'm afraid I can't offer you any more advice, but I do hope that perhaps your doctor can prescribe something to give you some relief and that it does improve quickly for you.

 

Kind regards,


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#4 judyt

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Posted 23 April 2013 - 02:26 AM

Hi Marsha,

From time to time I have had itching which has alternately driven me nuts and then been not so bad.   A few years ago I was talking to a friend who has Lupus and she mentioned that she has flares caused by Sulphites.   These are the sort of thing that are used in foods as preservatives, to lengthen shelf life, and indeed in some cases so foods can be moved around the world and stay in good condition.  

 

I decided that I would try to eliminate all preservatives from my daily diet and see if it helped.   Remarkably, or perhaps not, it did.   I became an avid reader of labels and in most cases I could find the foods I liked without too much trouble.   So for the past 3 years or so I have been preservative free and really do notice the difference.   I used to have to get somebody to put cream on my back most days and sometimes when I was having a day or so without family around it was very uncomfortable.   I can't remember now the last time I had to ask for help.

 

Maybe it is just a co-incidence but there is no way I would willingly go back.

 

The other thing that comes to mind as well is PBC.   Primary Biliary Cirrhosis is not uncommon in tandem with Scleroderma and I have been officially diagnosed with it for the past 6 months, having had deranged liver functions for about 10 years.   One of the most annoying symptoms that people notice is itching.   Often it is at night but not exclusively.   I get itching on the backs of my hands and around my face and my legs used to be a problem but that seems to have gone away.

 

I keep meaning to try Sweet's recipe but haven't got around to it yet.

 

Judyt



#5 marsha

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Posted 23 April 2013 - 04:12 AM

Thank you all for the great advice! Is there a list of dermatologists with any experience with Sclero? I love my Rheumotologist but he knows nothing about the disease. Every time I ask him a question he says he doesn't know. It's getting really frustrating. I've just about scratched myself raw. I am pretty sure that it is not dry skin Shelley, as I am lubing all the time. but I guess it could be a deeper dry? I would love to be a guinea pig for you all with the safflower oils. I will look that up after I post this . Thanks as always for being here with support and ideas.
Marsha



#6 Shelley Ensz

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Posted 23 April 2013 - 05:53 PM

Hi Marsha,

 

Well, you probably really need a rheumatologist who is a scleroderma expert because they can refer you to the right dermatologist.

 

In the meantime, go to your primary care doctor and talk to them. Just be sure to emphasize the itch, because I got distracted by the dry skin and focused on that, rather than the itch.  The itching can of course be caused by dry skin, but also by things like kidney failure, liver problems, medication side effects, allergies, etc., not to mention the inflammation that can precede or accompany skin tightening or hardening from scleroderma.

 

Your primary care doctor can examine you to at least rule some things out and they can refer you, as necessary to other specialists if needed. But if you have a rather lame rheumatologist, you should consider upgrading your primary care doctor (if need be) to a board-certified internal medicine specialist. They are adept at dealing with complex chronic illnesses and are perhaps more apt to at least look into things, and not just shrug them off.

 

:emoticons-group-hug:


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.

#7 marsha

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Posted 25 April 2013 - 04:52 PM

Well I contacted my scleroderma expert, and he couldn't suggest any "close" dermatologists, so I am back to Boston University to their Sclero doctors. I am seeing a different doctor since the last one and I did not hit it off too well. I got in for May 31st, I hope I can handle this itching that long.



#8 Shelley Ensz

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Posted 25 April 2013 - 08:03 PM

Hi Marsha,

 

That's great, but that's also quite a wait.

 

Do you have a primary care doctor you can see right now?  They can at least begin ruling things out, narrowing down the playing field.  And all those test results will come in handy at your consultation. For example, perhaps they can run some tests to see if your kidneys or liver are acting up.  Also, if they detect anything really major as the possible culprit, they might be able to get your appointment in Boston moved up.

 

:emoticons-group-hug:


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.

#9 marsha

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Posted 26 April 2013 - 07:55 AM

Well I just came back from my Primary... I have shingles which explains the pain in my leg, and the itching in that area... This is really not what I needed at this time, I also had a complete blood work up. I am not sure this explains the all over that itch that is driving me nuts... SIGH

#10 debonair susie

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Posted 26 April 2013 - 08:37 AM

AHA! Just reading your thread (for the first time), marsha; so sorry about the cause :(

 

Before having read this last post of yours, I was going to ASK if it might be nerve-related and suggest you see a neuro; As Shelley mentioned, when the skin becomes taut, ti raises havoc with the nerves (I experienced this while my skin was taut for 8 years).

 

I hope they have or WILL prescribe the topical medication to help you and I hope this can reslove your troubling itching.

 

In the meantime, I'm sending Extra Gentle Hugs over to You :emoticon-hug:  :emoticon-hug:

 

Please keep us posted! (By the way, as was already suggested, you might like to also try the safflower oil that Pam ran across).


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#11 Joelf

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Posted 26 April 2013 - 08:39 AM

Oh no, Marsha......what a pain, literally!!  :(

 

I thoroughly sympathise; I've had shingles and had a rash under my bust which lasted about six weeks or so and was very painful. My doctor prescribed an anti viral drug for me which did help a little with the symptoms. Here's a link to my thread on the subject.

 

I hope that it clears up okay and you feel better soon.

 

Kind regards


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#12 Shelley Ensz

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Posted 26 April 2013 - 09:36 AM

Hi Marsha,

 

Oh dear me. Shingles?!  You must have had them for a very long time now. I may be wrong -- I often am! -- but I think the anti-virals only really help if the shingles are caught within the first few days.

 

I think all of us could learn from your experience, Marsha. We should always see our primary care doctor (or some doctor, at least) whenever any new or troubling symptoms start. Never ever just assume it is probably due to scleroderma and put it off until our next rheumatology appointment. That's because we are just as susceptible as anyone else -- perhaps, even more --  to everything else that anyone can get. Such as shingles.

 

My goodness. They can really hurt. :crying:

 

Gene has had them twice, so we have both had shingles vaccinations. Even the vaccinations don't work 100% in preventing shingles but it lessens the odds a bit.

 

So Marsha, after you have this all cleared up, you may want to ask about getting vaccinated for it, because you can get shingles more than once. My shot cost about $200 and was not covered by any insurance. But after seeing and hearing what other people have suffered with shingles, it was well worth the expense.

 

:emoticons-group-hug:


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.

#13 marsha

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Posted 26 April 2013 - 11:17 AM

She seems to think I just broke out; I have a few raised filled bumps which confirmed her suspicions that it indeed was shingles. I am on the anti viral and amitriptyline which she suggested for the nerve pain; I have to take that at night for 90 days; she was explicit about taking that amitriptyline every day; apparently it has a great effect on the long term pain. I did a bit of research and I think we as sclero patients are more susceptible to shingles because of our immune systems.. Man this STINKS!! But I am reminded that it can always be worse. Keeping chin up and smile on my face!! and hoping that this pain will only last for a few weeks rather than years.



#14 Shelley Ensz

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Posted 30 April 2013 - 11:37 AM

Marsha, how are you doing? Are you feeling any better yet? I'm thinking of you and sending extra warm (but not itchy) hugs your way.

 

:emoticons-group-hug:


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 marsha

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Posted 01 May 2013 - 06:08 AM

I think it may have finally stopped spreading, but holy cow the pain is overwhelming Taking one day at a time.. Spring has finally sprung in Maine and im taking advantage of it!! Thank you for thinking of me. I hope you all have a wonderful day
Marsha

#16 Amanda Thorpe

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Posted 01 May 2013 - 06:50 AM

Hello Marsha

 

 

My husband has had shingles and my daughter in law has had it twice, it ain't; nice. My husband was off work for ages and actually took regular pain relief during that time, this is a man who struggles to take half a paracetamol when most people would down 2 in one! I hope your shingles resolve quickly and meantime take whatever they tell you to control the pain! :terrific: Things like amytriptyline work in the long term and is something I used to take for nerve pain until I developed heart problems and had to stop.

 

Make sure you rest up and give yourself time to get well, won't you? Don't do the sclerodermian thing and over extend yourself!

 

Take care.


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#17 Sweet

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Posted 02 May 2013 - 06:56 AM

Oh Marsha, (hmm that sounded strangely like something I heard on the Brady Bunch) :) I'm really sorry to hear of the shingles. I had a patch once when I was about 20 on my thigh, and I've never had anything so painful before! I hope it clears soon. As far as the "regular" dry sky, yes try the Safflower oil...really is helping me.

Much love to everyone,
Warm and gentle hugs,

Pamela
ISN Support Specialist
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