I have SS and am experiencing Vulval dryness,burning and constant pain..how do others cope with this?

[Flo36]

I often wake up with Chest tightness..what can I do to help myself?

[happycamper]

Hi Flo36,

Oh I'm hearing you! I have this problem on a regular basis as well and I have to say it would have to be one of the most uncomfortable side affects of this depressing disease. I can honestly say that I think I have tried every possible remedy available on the market and at great expense! What I have come to realise is that the best treatment (for me at least) is just regular use (as many times per day as needed) with ordinary old KY jelly. It is a much cheaper option than most other remedies and it actually works to relieve the burning, dryness and itching. It could take a few applications to get you back on track but I really think after a few days you will be much more comfortable. Just make sure you only use a reasonably small amount otherwise you will become uncomfortable because things down there can become too wet and slippery, it's a kind of trial and error type thing.

As far as the chest tightness is concerned, I am yet to find a remedy other than to do some deep breathing when I get out of bed in the morning. This does seem to get things on track fairly quickly for me.Good Luck, I know it can all make you feel quite miserable at times.

[Okebro]

I know everyone is different, especially with SS, but I have seen a gynaecologist about my vaginal discomfort and she told me for my skin not to use lubricants at all. To use Olive oil, and wash with Aqueous lotion. It hasn't been a total fix but it has improved some. And both are cheap so that is a plus.

[Spice]

Hi Flos 36 I too was told by my GP to use Olive oil. The thing is it wipes away quickly and you have to keep applying it. As I ride a bike for recreation and had trouble with being rubbed she said to try one of the baby nappy rash products but to make sure it has zinc in it. Haven't tried this yet but maybe its something to add to your list. I have shared before about the Mannatec Products (it is a glyconutritional supplement) I take the Ambrotose and Plus products on their list of supplements. It helps at the cellular level which in turn helps run your body functions better. My life now has quality no side effects I am able to do far more and any flares are cushioned right down and don't last long. Australia 1300 361 878 NZ 0800 333 250 for enquiries. It costs me about $900 spread over a whole year and I look on this as an investment in my health. I hope I have access to it forever.

[Blogg]

I also get chest tightness and dryness. I have no solution but don't panic. It does not seem to have any bad outcomes.

[arcdeciel]

Hi Flo36,

I have found Calendula Cream applied 1-3 times a day helpful. It stings the 1st few times but settles down. I also use R Lipoic Acid Capsules. Papaya Cream also helps especially as it provides a bit of a barrier.

[DianeR]

Oh ouch, how uncomfortable and annoying! Perhaps you might like to check for the usual suspects such as yeast infection etc which I have read can become more common with Sjogren's. Yes to Spice who suggested nappy rash cream. I have used it when cycling for years as a preventative, and now with Sjogrens I also use it for healing. Bepanthen works the best as it has more lanolin and Amolin is good too though lighter. If you warm it a little when applying it goes on better and does stay on! The most important thing that works for me is to avoid damage when showering by oh so gentle cleaning with organic non chemical moisturising body wash. Another lubricating product you might try is Sylk which is a natural alternative to KY.

On the other point, I had my first wake up in the night with chest tightness recently which scared me a bit. So it is very comforting to hear it is part of the syndrome and not to be worried about, thanks!

[Beverly]

The vulva dryness is called Vulvodynia, I use Vagisil cream and Ovestin vaginal cream,.

Home remedies and self-care measures for vulvodynia can bring relief for many women. Some self-care measures to relieve the pain of vulvodynia include:

Rinsing the area with cool water, particularly after urination and sexual activity

Soaking in cool or warm sitz baths

Using topical ice packs wrapped in a towel

Heating pad use, in contrast, may help some women

Using mild, unscented soaps and detergent

Using white, unscented toilet tissue

Wearing white cotton underwear

Wearing loose-fitting clothing and avoiding stockings or pantyhose

Avoiding pools or hot tubs with chlorinated water

Using a water-soluble lubricant during sexual intercourse

Avoiding activities such as bicycling, that put pressure on the vulvar area

Keeping the vulvar area dry and clean

Avoiding food that can make the urine more irritating to the skin of the genital area. These foods include beans, berries, nuts, and chocolate

Over-the-counter antihistamines can help reduce itching, particularly at night.