Itching

[Betsboop]

I am having a flare up at the moment . Everything seems to have dried out . The worst thing is a rash on my arms which is driving me mad . Moisturising every few hours trying to avoid he steroid cream . Also very constipated despite eating a very healthy diet . Tired , eyes dry and putting drops in every half hour . Feeling so fed up with all this . Dry cough and generally out of sorts . Sorry to go on just exhausted with it .

[LittleSteve]

Hi so sorry you are having such a bad time. My consultant told me to put Aveeno cream in the fridge then apply it in strokes going the way the fine hair would grow. Don't rub it just single stokes one way. Apparently this helps to break the itch cycle... And it has worked for me most of the time. Hope this helps. 😊

[Betsboop in reply to LittleSteve]

Thank you I will try that .

[harmony2]

Hi Betsboop , oh I do relate to chronic itching and feel great empathy for you. You’ve probably thought of this but…

Is there any chance it’s a medication side effect?

Any new soaps, lotions?

My consultant prescribed double base gel. See medicines.org.uk/emc/produc... helps some. I use after every bath and hand wash proactively and reactively. Also through the day and night. I also try to avoid steroid cream. But cannot fully. I usually try two or three applications of double base gel then steroid ointment.

Other strategies:

Wear loose clothes, even when weather is cold and I need layers. Very soft, smooth material. Cotton is best. Some polyesters exacerbate. Anything slightly snug exacerbates itching. To include bra, waistband, socks, trendy snug sleeves. Or it can seem like no identifiable source!

Wear non latex gloves for all cleaning. Avoid any skin rubbing whenever possible. Avoid products with chemical fragrances of every sort.

Use aveeno shower body was with light blue coloured lid.

Sorry about the bowel issues. I don’t get that often but I take a lot of fibre, maybe similar to yourself, as I see you eat well. I usually eat as follows. Porridge oats for breakfast. Wheat wrap for my tuna and hummous at lunch. Two Large portions of steamed veg with evening meal (with some protein). Also a shredded wheat cereal snack twice a day.

If I require help with constipation I use prescription Strigol or Laxido (same ingredients). I take with more water than it calls for. It is definitely more gentle than anything else I have tried over the years of Sjogren’s.

Keep up the high hydration. 👏🏽 Even if seems ineffective. 😔

If the dry cough has continued for a few months I do think I would ask consultant to assess it since there can be issues with lungs for Sjogren’s patients. In my reading for almost 20 years this has not been well recognised until recently. American Sjogren’s Syndrome Foundation now have some recommended clinical guidelines for lung assessment for Sjogren’s patients. Take to appointment and very respectfully ask about because most clinicians don’t see Sjogren’s much and are therefore less aware.

I know it doesn’t fix it but I am sorry you feel so fed up. The constancy is very wearing. 😪

[Betsboop in reply to harmony2]

Thank you for your helpful comments . I am seeing rheumatologist in January will ask about the cough . This condition is so far reaching

[Betsboop in reply to harmony2]

I have now developed nasty cracks on the side of my mouth . Sorry to go on I have not been diagnosed for long and I guess I have put up with a lot of things for along time which did not seem related . My GP is not very knowledgable well I say GP you never see them usually telephone chats , so I must sound like a proper moaner as all these things not life threatening . . I have been moisturising my mouth but cannot get rid of the sores . I sound like a hypochondriac and feel like one . Any suggestions please as what to put on the cracks ? Thank you

[harmony2 in reply to Betsboop]

Hmmm. That’s a new one to me. I encourage you to make this a new thread and ask the group because I don’t have any knowledge of this. But I would also elaborate do you mean at the corners of your mouth outside or literally inside your mouth at the side?

And I would include your second point which is that you are you sound like a hypochondriac. This part I definitely can relate to very well. I feel like I have so many systems that are messed up that I am I could easily go in every month and tell them new issues. And from all my different issued I would say I have 12 diagnoses. (A few I have not seen specialists about, such as a sensory processing disorder, because I just can’t get round to all the appointments if I could even get them.

But I know full well what it is from my prior work and I’ve developed this as my disease has progressed.)

And some of the issues such as overactive bladder, well, a common medical approach to that is generally a pill that causes dryness so that’s a no go for me or anyone with Sjogren’s.

One by one there been more and more issues or just symptoms that do get checked out but medical professionals basically come back to me and say, “well with ruled out everything nasty and we don’t know why your body is having that symptom. It could be related to your autoimmune disease but we don’t really know.“

I genuinely cannot tell you how many times I’ve left doctors appointments, even specialists, and had a big cry due to lack of diagnosis , answers and/or treatment plan.

So I keep getting support here or similar places where others “get it”, because I (most here) deeply relate to occasional worries that a medical professional is going to think, “this patient (me) just comes in (or calls) about everything.”

In summary, I genuinely think that very little is understood about autoimmune disease and that it can be quite far reaching into different body systems.

(note: I had this a little substantiated recently when I had some nerve test for all sorts of pains and weird sensations and restlessness in my legs.

I genuinely think that very little is understood about autoimmune disease and that autoimmune disease can be quite far-reaching into different body systems.

I had this substantiated a little recently when I had some nerve tests for allsorts of pains, weird sensations, and restlessness in my legs. In the end the neurologist said, “your nerves come out healthy on the tests; you may have inflammation that is causing these symptoms.”

He said, “for example, inflammation in the circulatory system could be affecting your blood getting to the tiny nerves in your periphery.” Well, I had never heard that theory before but for several years I have been convinced something is going on in my neurological system. He advised me that from autoimmune disease there can be inflammation that affects other systems and that we don’t understand the ramifications.” Furthermore, he said, “we don’t know how to treat these things.”

So you will probably at times have symptoms that even the specialists don’t understand very well.

Keep asking questions here and you’ll get some support and understanding which may be greater than a general physician can provide.

In a lot of cases there genuinely are not treatment options and we learn from each other what may help a little bit.

So ask your first question to the group would be my final recommendation. There’s not a lot of activity on this group so it’s nice when there’s some dialogue. To not feel funny about asking questions, remind yourself that’s a primary purpose of this forum. 😊🤗

[SusieW2]

Itching is so distracting. I'm not a medical professional. But from my experience itching comes from what I eat. I've found my triggers are high acid foods like tomatoes, peppers, citrus and coconut. I also notice inflammation with the itching. Try making a fist to detect this. Often it will be more on one side of the body than the other, mysterious. Anyway, you can try a low acid diet for a week to see if you get any relief. Good luck!

[Betsboop in reply to SusieW2]

Going to eat less acidic food . Anything is worth trying thank you and yes it seems to on one side more than the other .