The Australian Sjögren's Syndrome Association
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Ageing Process & SS

Hello to all : )

I am a new member and live in the UK. Seeing that there was an Australian SS group on the Health Unlocked site I thought it would be lovely to make some new friends and exchange views.

I`m especially interested in SS and the effects on older women. Purely selfish reasons but I hope that the subject may help others as well as myself.


The most annoying thing was what happened at menopause. We see so much on TV on so many subjects to do with the human body, and yet menopause is still something of a taboo, as is the

ageing process.

There seems little information (still) on what to do with us when hormones drop/sleep wont come, and dryness becomes an even worse issue for many of us.

After almost 30 years I had imagined that GP`s would be so familiar with SS that there would be some sort of process to fast track SS us so that we did not have to go from department to department by a snail post referral system. Even then, no-one seems to ask what other problems one might be having. I do wish they would take a medical history from time to time and refer internally. It would save the NHS thousands of £`s.

My female dentist talks about all topics to do with dryness while she is working on my teeth - wonderful : )

We used to have women`s hospitals around the UK, but I believe the last one is in Liverpool. It would be so nice to go for one appointment at onset of menopause with a female consultant Rheumatologist and Gynaecologist who has good knowledge of SS. I have only met two female Consultants but the appointments were so beneficial and productive I still remember thinking....why don`t we have one of each at our hospital? That`s not to be disrespectful to the nice male Rheumatologists who help so much. Its just that women talk so freely about our female anatomy as though we`d known each other for years.

In the UK the GP deals with all the menopausal problems ( I have found), and it`s especially difficult

to sort out all the issues women face in a short appointment....then more as each symptom comes to the fore. It makes us look like neurotics going for this or that or the next thing.

I had a visit from a young woman several months ago. She was going to try to help me find a home help. I said that I had SS and had some papers she might like to read. `Oh, I know all about it` she replied. It`s very rare and I have just been diagnosed with it`. I asked where she had been for the diagnosis. When she told me I asked whether she had been told about the BSSA. What`s that? she said. I felt so disappointed that this lady was left feeling she had a rare condition and not a mention of support systems. She was seeing other SS patients on her rounds and had no information to give them.

I was/am semi housebound and would like to talk about things with women of the same age. I do have a sense of humour though so please feel free to have a laugh at anything I have written about

or a moan, but do drop me a line if you feel up to it.

I have rambled on a bit so I hope it`snot too long.

My other interests are jaw problems and dryness

Radiation therapy to eye area/problems and fatigue afterwards.

My hobbies are painting, writing, gardening, DIY when able.

Oh, and part excuse all the errors :/

Best Wishes

Mini Mouse

3 Replies

My rheumatologist is female, pointed out the feminine dryness issue, added some general advice and left it to me to get back to her. Personally I find the muscle stiffness and general fatigue the most trying. I too live in the UK and one of my activities is in the RNIB transcription unit - I spent yesterday brailling a cookbook (via computer, I don't read much braille myself), I do craft and am interested in Egyptology. I try to keep occupied with activities which aren't too physically demanding since I have OA as well - TENS, a new find for me, is great.

I have found that writing down my concerns and handing them to GPs or sometimes consultants can work well. They can read quite fast, they can also deal with the points at leisure when it comes to referrals even answering by mail or phone at a later date. I came to the conclusion that it was my body and I was the major coordinator of services, my GP was my technical advisor/manager and my consultant my external specialist advisor with access to external services. But, my body, and while acknowledging their expertise they don't know how I am feeling and coping as well as I do. It helps me psychologically as well because I have a better sense that I am 'negotiating' with the disease rather than being controlled by it, at least to some extent.

Good luck.


Hello Anhydro : )

Thank you for taking the time to respond to my message. Also I apologise for the delay in replying to you.

I have recently had the Shingles virus and it`s taking a while to recover.

I was drawn immediately to your interests and started a reply right away - Egyptology and your work with RNIB took up most of the reply. I had to delete as it became more novella : )

I was diagnosed with SS about 25 years ago and until menopause all was well (more or less).

I had to retire early due to the various things which happened around the same time. One of the symptoms since onset had been dry skin and some eczema/body and scalp/sun sensitivity. The other was having profound fatigue after radiation therapy to my face.

At menopause everything went haywire. The intense change in body temperature caused moisture to run in to my eyes. Even with eye drops the moisture caused burning sensation to them. It also caused inflammation of the hair root follicles on my scalp and redness elsewhere . My sense of smell became acute with the drying out of sinus, my swallow mechanism changed and on it went.

The GP called it `old age` and would not refer me to any-one. I was so unwell and had no idea who I should see even though I was an old hand. One has to be referred by letter.

A few years later someone sent me a BSSA article. It had just about everything in it I`d mentioned and ended with `Dont let them tell you it`s all old age.` Really I could have wept as by then I`d had to retire.

Back to Egypt : ) it has always interested me. I am wondering whether you saw the programme on the American scientist who turned the space cameras on to Egypt and found the old cities? I was on the edge of my seat as they went to look for them. If you did see/hear I perhaps you have more news?

I would be interested to hear about your crafting if up to it?

I paint in inks these days because the colours are nice and strong. After my last eye op I couldn`t believe just how strong lol - I give them to a charity.....they are not wonderful but I like them and people seem to buy them - Also write when I can.

There is nothing like getting engrossed in something pleasurable to channel things : ) and I`m

grateful for the creativity I have been blessed with.

Better stop now.

Best Wishes

Mini Mouse


Just found your comments Minimouse. We must be a similar age group, as I have had the same problems too. I live in the UK ,as you know there is no direct BSSA blog like this on line I am aware of.

I had a bad flare up recently where all my muscles seemed to ache. A bout of doing too much gardening housework etc.. stress? I had also been taken off Iron tablets too.

Took 2 weeks to get over and it was only when I was put on anti inflammatory tablets, plus Omeprazole to reduce stomach acid that i seemed to recover.

If you take Pilocarpine for your eyes like I do it seems the Menopause is worse- as I have night sweats or a side affect of .

Menopace is a supplement here in the UK (from any Chemist) that I have tried in the past, when I was in my 50's It did seem to help.

I have asked my Doctor to refer me to get some exercises like I did a few years ago, as I don't want to get worse. Its called :Solihull Active. I am sure you will have one in your area

You get 12 Doc Spot weeks discounted activities.. other items include:

Tia Chi or Extend and Dance sessions, or 12 week course on how to loose weight,

all with support to give you confidence. I did not loose much weight but my blood pressure improved and my strength. I met lots of folk too! Tai Chi is quite relaxing and worth trying! I hope this is of some help!

I went to night school 12 years ago to study art, pottery embroidery etc. after 2 years I had to give it up. due to hubby's illness. At the same time I became lacking in Iron. Have you noticed that yourself?,

I am still working, a mobile hairdresser;part time as I am a carer for my husband. bless him! Hope you are keeping well :)


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