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(Thursday, 31st Jul, 2014)

Sjogren's syndrome-often underdiagnosed

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2 Posts

slowsnail  ·  17 Apr 2014

Have been diagnosed with Primary Sjorgrens following my lip biospy.  At least I know what is causing all my symptoms and not in my head.  Bloods all ok but was wondering will this always be the case.  Waiting now for app with a Rheumatolgist to see what route I will go.  Can anyone tell if symptoms get worse as you get older.  Also is there any financial help ie. gp card etc is this regarded as a long term illness.  appreciate any feed back.

 

2 Posts

slowsnail  ·  02 Mar 2014

I have just had a lip biopsy and awaiting results due to my mouth being very dry.  Was referred by dental hosp to an ENT.  Had eye plugs inserted as eyes had been quite dry and gritty.  My bloods are always ok except White cell count low but gp says alot of people have this.  I am very tired most of time and dont sleep very well with dry mouth and nose.  Has anyone else got bloods clear but yet had Sjorgrens.  In one way I will be sort of relieved in that all these symptoms are just not in my head  would appreciate feed back. 

 

3 Posts

Nosder  ·  18 Feb 2014

I see there is a Sjogren's support group meeting at 11am on 3rd March.  Is this meeting also taking place in O'shea's pub at Clonskeagh?

 

3 Posts

Nosder  ·  25 Dec 2013

MG15 mentioned a meeting of people with Sjogrens who met recently in Clonskea (Dublin). I would really like to join a group of Sjogrens sufferers to share experiences.

 

2 Posts

Johnbej  ·  05 Dec 2013

Thanks Mg15, do you have any doctors names or even where they practise and I'll try to get them to see my mum? I would appreciate it.

thanks

 

2 Posts

mg15  ·  02 Dec 2013

We actually met today! in O'Sheas pub in  Clonskeagh. The group meet on the first Monday of every 3rd month. So the next meeting is 11am on 3rd March a Monday.  There are excellent Drs who deal with Sjogrens. Some harder to get to see than others. Some take a long time to get to see which is such a pity as it is such a uncomfortable disease. But when you do get to see them you can be put on the right direction. It is worth getting hold of The Sjogrens book, from Amazon.co.uk It is very helpful.

http://www.amazon.co.uk/Sjogrens-Book-Daniel-J-Wallace/dp/0199737223/ref=sr_1_3?s=books&ie=UTF8&qid=1386013039&sr=1-3&keywords=sjogrens+syndrome

 

2 Posts

Johnbej  ·  02 Dec 2013

Hi there,

I've read all comments on this discussion and I was wondering if any of you know of a doctor or a clinic in Ireland that specializes on treatment of sjrogens. My mother has the condition and althought she's coping well she'd like to go for a check up. She lives overseas and regularly visits her doctor, she's planing to stay in Ireland for a few months and I don't really know where to start looking for a doctor for her. Does anyone have any advice? Thank you.

 

30 Posts

broken1  ·  27 Feb 2013

they meet in the pub in clonskeagh, forget the name (brain fog) but through the bSSA you will be able to find out times and frequency. its only once a month i think.  i found it hard going as i have so many confditions and with severe deafness.  i get lonesome cos of the deafness, it was one opportunity to meet with someone with a similar condition but i couldnt hear a darn word, and felt that once someone said something i said i had yet another condition and another, when i heard myself i felt them sort of thinking 'surely to god not another condition' and surely to god yes, i got embarrassed to go back.  its tough, being sick you do find all this tough.  

the crowd were very friendly. my embarrassment kept me away.

 

2 Posts

mg15  ·  27 Feb 2013

Does anyone know where the Sjogrens group meet monthly? also does anyone have a contact email or tel no for them? thanks

 

2 Posts

Healthy1  ·  25 Sep 2011

I am 35, symptoms started when I was 20.  I feel for you :(   My life has been greatly affected by pain, and more recently, fatigue. 

The fatigue was getting in my way the most, still is.  Actually, I take that back, pain is the worst symptom, and it's constant and debilitating.  Was diagnosed with Fibromyalgia a while back as well, and now they think I have some kind of spinal cord disorder. 

I wanted to say that I am sorry that the Plaquinil and thyroid medicine haven't helped much.  They have helped me quite a bit.  Even though I still have low energy, it's not as low.  I'm not just eating, sleeping, and working anymore.  I was starting to wonder if I could continue to work full-time as well.  My Osteopath, who has worked with me for a few years and always believed me, is amazed I still work, given the condition my back and muscles are in. It took about 2 months for the Plaquinil to start working for me.  How long have you been on it?  And what is your thyroid (TSH) level at?

Since I posted last I was also diagnosed with Mixed Connective Tissue Disorder (overlap of Lupus, Scleroderma, and Polymyositis).  My right foot has been swollen for 10 months, and I started to have TERRIBLE acid reflux symptoms.  For 4 months slept in a recliner almost every night.  It's finally improving.  I think decreasing stress is really helpful.  I'm not very good at that, but having a dog (which also exhausts me) does help me to get out in nature, and nature brings me a great sense of peace.

Good luck to you all!  As one of you mentioned, we are all very brave, and you do give me courage.

 

30 Posts

broken1  ·  20 Aug 2011

do get advice on your benefits and money management, if you can trip down to the Citizens advice bureau and ask for info on benefits and entitlements, also make an appointment with MAABS to look at your finances and all you need to do there, both great great help in these times.  flick though all the brochures and take some away to study at home, research all possibilities to ease up on work hours, any work hours you can do at home in less stress too?Laughing

 

2 Posts

:(  ·  19 Aug 2011

Thanks for all advice and kind words. 

It's been a long hard week, one that,s prompted me to go to the doctors.  He's personally advised me to look at reducing my hours (i currently work 8.30 - 5.00 mon-fri) and to look into getting financial help towards this. Does anyone know if I am likely to be able to claim some form of benefit? I still want to work, but can only manage part time.  I have a mortgage, car to run etc, and so i still need to bring in a similar wage as to what I am now.

I am on medication, I take thyroxin daily and also plaquenil (2 a day) but so far I still feel the same, utterly exhausted.

 

30 Posts

broken1  ·  18 Aug 2011

hi arlene,

it is a second option i believe, its not the preferred one by patients as its a vile taste but i am ok about that.

least of my worries.

it was prescribed to me by Prof. Graham Hughes of the Lupus Centre, google him, he is world famous, a fact i did NOT know when i met him first.

he is gorgeous, but retired now, his next in command is also one of the best Dr. David D'Cruz head of the Louise Coote Unit in St. Thomas's hopsital.

many people with this complex condition are given the run-a-round, its not a well understood condition.

very few really come to grips entirely with this condition.

xann

 

4 Posts

arlene  ·  18 Aug 2011

To Broken1,

Nice to hear from you, thank you for your comments on Mepacrine. I will ask about it at my next appointment at the hospital. Sorry to hear that you are in hospital hope you feel better soon just one day at a time. I am in Belfast so they should know about Mepacrine here although it has not been mentioned to me before and I am going into my 3rd year with this. Take care.

Regards Arlene


arlene

 

30 Posts

broken1  ·  17 Aug 2011

for Arlene,

i too couldnt take plaquenil due to my neuro difficulties and Congenital Rubella Syndrome and brain damage, but the Lupus centre in London put me on Mepacrine,  you can get it here but its not used a lot.  i take half a tablet three times a week, thats all, just half a tablet three times a WEEK, i also take sulphaquinnine, think thats the name but i shall check for you shortly, am in hospital right now so dont have the box!!! xx

 

30 Posts

broken1  ·  17 Aug 2011

you are very young to be stuggling so badly :(

but you are defo not alone.

i joined the bristish sjogrens association and they do meet once a month in clonskea area. i wonder would i be able to go to a pub in the evening and chat also but i do want to feel less alone with all this.

i know how you feel about life grinding to a halt outside work hours.  i am an oldie and more and more in the bed, not to my liking.

take heart, lets hope as the years go by that more will be offered by way of help in all things medical.  friends and family are SO important and increasingly asked to play a role in helping their own, i have not found this the case.

the pace of life now is fast so maybe that and individualism is making it more 'americanised'  i hope that joining here you wil get some help. i do know that even reading of anothers stuggle helps, donno why cos it does not change your own.

it seems to make me realise that many are struggling and being very very brave. that does help.

sometimes i wish i didnt have to be this brave!!

take care,

 

4 Posts

arlene  ·  17 Aug 2011

Hi,

I too have Sjogrens/Lupus and suffer from extreme tirdness. I was working full time but just had to give it up as I could no longer cope. My Doctor had me try Plaquenil as this is supposed to help with the fatigue but I also suffer from uticaria I could not take it as I came out in a rash. So right now I just take one day at a time and try and rest as much as I can. You should speak to your Doctor about the fatigue he may be able to give you something to help. I know it is not easy to cope with this I just carried on as normal a bit in denial really but finally I accepted that there is only so much I can do and this is not going to go away. I hope you manage with this it is not easy and the worst thing is everyone says you dont look sick which doesn't help.

Regards Arlene.


arlene

 

2 Posts

:(  ·  16 Aug 2011

Hi,

I'm new to this site but hoping someone can offer me some advice and hope to find people with conditions simililar to mine people who truely know what i'm talking about and what its like living with it.  I'm 26 years old and over the past year or two, have been diagnosed with the following: underactive thyroid, b12 defiency, hypoglycemia and now sjogrens/lupus.  My main complaint of all these is extreme tiredness, where every day is a struggle and i slowly feel like i'm grinding to a halt.  I work full time, but then do nothing when I get home on an evening as i'm just too exhausted.  My true friends are there for me, and they try to understand, but I am becoming quite lonely, especially at work as I'm struggling so much with my tiredness, that i don't join in with the office chat and banter.  I can't afford to reduce my working hours but my life is literally work, eat and sleep. I have at least 9 hours sleep every night, but still feel drained.  Anyone got any advice for me? I feel quite alone and lost at the moment.

Thanks

 

296 Posts

Broken  ·  23 Mar 2011

Hello Tearless!

yes, i too find all smells offensive bar natural occurring ones in nature.

even lavender from a bottle in my home too.

i dislike cigarette smoke smell, soap, bleach, perfumes, deodorant, in fact most smells distress me.

its weird i have to say.  i mean, its so so painfully difficult to deal with these smells.

went to an OT today, she is half english and returned here to ireland, she told me Ireland was way off richter in regard to progress and all that can be provided was assessments and such but whats the point in that if you cannot provide the people with the needs they assessed them for.

today, a special cup, spoon and voice activation computer software ALL has to be bought by me, also special mattress, bed cradle.

she did say that the fibro i have is a very painful condition.

i felt that was being very overlooked as i have pervasive pain.

she also feels meditation should be considered and i have considered that mega.

i have to say, nothing better for health than to be actually believed and listened to!


"Please God, help the ignorant!"

 

2 Posts

Tearless  ·  22 Mar 2011

Today, I found a very comprehensive clinical study on my loss of smell and taste. This loss of sensory functionis present in a high percentage of SS sufferers. The outcome of the study acknowledges that SS sufferers have a reduced quality of life as taste and smell play a huge role in a person's everyday daily enjoyment of life. On a more serious note - twice recently I have had fires in my house and was totally unaware of what was happening due to my lack of smell.  So there is a further dimension to what doctors seem to disregard as just "one of those things that happen".   This study also points out that the taste that is least affected is "sweet" - this is because it exists apart from the others bitter, salt, sour which are dependant on saliva.  This I can relate to as foods such as red peppers, sweet potato, carrots - I can taste perfectly - eventhough it doesn't linger - however, a lemon could taste like a potato and a cheese and onion crisp could taste like toast. I find perfumes particularly offensive and even the smell of detergents, soaps and shampoos make me gag.  

This morning I had a conversation with a friend whose mother committed suicide 12 months ago - having been told for many years that she was depressed and the pain she suffered was nothing serious. Each snippet of shared information gives me a boost and together with blue skies and sunshine today - I am preparing for my return to wellbeing - using my own research and holistic natural options.  I was almost past the point of rescue  and almost conned by the medical profession, into believing that it was all in my mind. Thank God for the Internet, the Irishhealth website and Sjogrens America.  

Tearless and Tasteless  

 

296 Posts

Broken  ·  21 Mar 2011

Tearless, join the club.

many would be thrawling looking for diagnosis and being treated with anti-depressants and not even get that far but be shown the door as i was.

i had to go to St. Toms in London for the Sjogrens diagnosis, but i was also in a wheelchair too, and i was discovered to have chronic muscle myopathy.

unrelated so dont worry.

i had to learn to walk again by myself too and have had five physio sessions in five years! yep we have a great medical service here.

I also do not eat well and had to source my own adapted spoon even though i went through an advisory rehab and my area OT manager didnt know where to get it.

that spoon has been lost, that has been noted and probably be the same lenght of time to get another.

Hearing aid moulds were made about nine months ago and still have not got them.

luckily i am using an old one and got a second made privately.

need special shoes, but the ones they gave me kill my feet and the lift for the shorter leg was forgotten to be put on.

also losing my teeth, two years later got new front teeth but for some odd reason one was not put on the denture, so after two years of two nasty looking real teeth in the front and all else gone, i get brand new nashers and a side tooth has not been added, will it be two years before i can smile with confidence again?

Finally, i am struggling to get out of my home after being shot at, by a child with a pellet gun, nearly attacked by a male neighbour and being a wheelchair user etc i am still left here, alone.

i use bolts of course, but i am still in fear.

life is good being a cripple and sickie in ireland.

oh cripple is ok now i believe, its noy pc to say 'cripple' for some odd reasons, cripples use the term!

defeats me that one too!!!


"Please God, help the ignorant!"

 

2 Posts

Tearless  ·  21 Mar 2011

I am thrilled to have found this discussion group.  I have all of the symptoms of SS but as I am under the care of about 5 health professionals I have not had a proper diagnosis.  I feel like I am being treated by body parts, which is so frustrating. Today I came across this website and the American Sjorgens Syndrome Foundation 

I cannot believe that I have been to my GP on an ongoing basis with eye infections and dryness alongwith many of the other symptoms and her diagnosis is to treat me with anti depressants and pain medication.  I have seen an eye specialist who did the "tear test" and have dry eye syndrome.  These symptoms in totality scream out SS.  I am fed up with the medical ethic in Ireland.  

Eventhough I am making my own diagnosis, I am going to start today on my journey towards optimum health and look forward to sharing the good stuff with all of you.  I have one question - I have also lost my sense of smell and taste - has anybody else suffered with this?Cool

Best of luck to all chronic illness sufferers - I don't know about you but having a label makes it much easier to deal with.

Tearless

 

2 Posts

Healthy1  ·  10 Mar 2011

Hello all, this is my first time ever joining a discussion group.  I don't know why I waited for so long, perhaps because I'm technologically challenged. I found this discussion when I was looking up Sjogren's (which I was recently diagnosed with) and IBS together.  I've only read a few posts, but wanted to say that they've helped.  They've helped me to feel a little better about not being so alone in this (with family members not understanding and getting frustrated, having to give up so many things that I used to enjoy, being so limited by pain, having anxiety about the limitations and the expectations I and others place on me, etc.).  I also have been diagnosed with Fibromyalgia, peripheral neuropathy, unspecified inflammatory rheumatism, that they think might be Rheumatoid Arthritis (based on my family history), Interstitial Cystitis, and more that I don't care to type at the moment, because I really should go try to do a light work out.  And typing is causing a lot of pain in my upper back right now.  But I just wanted to say thank you, for sharing, for supporting each other, for making me not feel so alone with this.  :)

 

2 Posts

kiwi46  ·  23 Oct 2010

Hi Brenski Beat, I have not been on this site for a while cos I'm new to these forum sites.  I found your message so lovely, words can't explain how moved I am over it.  I'm an extremely anxious person and definitely my stress levels make my condition worse, I have genetic anxiety in my family.  I find it extremely difficult to relax.  I've probably taken on more than I can chew at the moment cos I've started back at college and I'm finding it very challenging.  The Course I took on to do is not suited to my condition, Sports Injury Treatment, and there are so many subjects.  I enjoy the Anatomy and Physiology, but I have to study really hard for it, I would just love to pass it!  The Kinesiology is interesting but difficult.  However, any of the physical activities are causing me a lot of pain.  My class tutor is aware of my condition and said I will have to be more careful particularly with any weight bearing exercises on my joints, I'm not lifting weights but if I do any activities in the Gym like running or attemping to participate in basketball, my joints are in bits and the pain causes me more anxiety.  My class is made up of 28 students, 26 of which are aged between 17 and 21 and then theres me aged 46! and another man just a few years older but he is very active and well able for the physical activities.  I don't know what I was thinking of when I decided to do the Course but at least it's getting me out of the house and taking my mind off the SS.  Social events also cause me to be very anxious, I have been invited to a Christening today and I'm anxious about it when I shouldn't be.  I love your attitude and will asspire to become more calm as life is a wonderful gift and I'm luckier than a lot of people.  Thanks so much for your beautiful words.  I'm glad I looked on this forum today and I'm going to try and have a good day and not worry about the christening.  Smile

 

296 Posts

Broken  ·  18 Oct 2010

I actually never associated this muscle stiffness and pain with sjogrens! i thought it was more my dystonia which i have.

yes, no one really knows what illness means!  broken bones, sniffles, yes but other than that most people have to continue.

I am in extreme pain all over right now.  when i do too much the pain is down my back, bum and also legs.

when i drive too much, i get dreadful pain in my thighs and its agony to sit down on the bum or the thighs.  anyone have this symptom?

another odd thing indeed being i always need to have the legs straight out even when sitting down.

light is dreadful too (saves electricity bills though)!

skin even feels sore to touch.

my hands burn like crazy and my feet buzz when i get very tired.

i have raynauds, crohns, hypothyroidism, celiac, dystonia, ataxia and am also deaf ++, with a twin with parkinsons, i am on the go all the time. Dont get a fright, i am a Rubella adult so not many of us around, it not catching over the site!


"Please God, help the ignorant!"

 

13 Posts

Brenski Beat  ·  18 Oct 2010

Hi Kiwi.  I empathise and agree.  Few people really know what an autoimmune disease is let alone SS.  I have had more sympathy from people when I have had a bad chest cold than I have ever had with SS... even my family!  So, yes it can be isolating.  Compound this with the associated uncertainties and unpredictability, its a mess up.  Although I never feel well, stress and tiredness exacerbate the problems for me and can start a flare which can last for weeks.  Feeling sick, pain, tiredness, worry, not being able to play with my young children...  So, its a vicious circle... SS make you anxious, which leads to stress and restlessness and in turn you become ill, which reminds you of SS, anxiety, la-de-la-de-la...

Over time though (and this is the reason I am posting) I have found that having got a little more used to the idea of my own mortality and tried to live my life more aware of my family and the joys of it all, I have become a little more relaxed and less stressed about it. I have become aware that worrying is doing more damage than if I don’t worry.  Therefore, my body has somehow given my mind the permission to relax a little, accept with dignity the things that come and to try to keep looking forward.  This has a positive effect on the people around me too and then instead of them having to deal with my ills on a daily basis (which people do get fed up of) they are more tolerant when I really need it.  I get more room to recover when I am most sick.

I know that exercise is important regardless of one’s stage and condition in life but I do find that it can make me feel less well than I would expect.  I find that my ligaments and tendons are effected, makes them stiffen and causing inflammation when I am physical.  For me, the tendons in my hands and feet are affected most.  So, your neck might be taking a bit of a bashing when swimming.  I dunno, try the back stroke rather than the front crawl!!!!! Have a sauna after!!!!! 

Yes, I also agree with you when you advise new comers not to google SS.  It is terrifying and somewhat unrealistic and unrepresentative of the vast majority of sufferers.  I contribute a lot of my initial anxiety to google! 

Plenty of rest, less stress and worry, more Louth fresh air!

Best of luck...

 

2 Posts

kiwi46  ·  16 Oct 2010

Hi everyone.  I was very glad to find this Irish site.  I've just been diagnosed with SS and although I try to keep posititive, I get really anxious as well.  People who don't have it don't know anything about it so its pointless trying to explain to them how you are feeling. I have good days and bad days.  My worst SS symptom at the moment is pain and stiffness in my neck. I would love to hear some suggestions from anyone who can help me with this.  I love sport especially swimming and my neck pain gets more severe after any physical activity.  I also have Raynards but can cope with symptoms.  I am being monitored for other autoimmune disorders associated with Mixed Connective Tissue Disorders.  I'm 46 and live in Louth.  I would advise other newly diagnosed SS sufferers not to look up to much on the net cos I find some of the sites very distressing.  I going for a swim now as mentally I have to keep myself motivated and it has a feel good factor about it but later this evening I'll probably feel a bit down cos of the neck pain.  Life is for living and I have to try and keep positive. Smile

 

296 Posts

Broken  ·  14 Sep 2010

Back again now.

I would like to say that i have been very symptomatic in the past two weeks.

I am under considerable stress at present, exhausted too.

I take on too much each day, from the moment i get up til bed after midnight i am physcially active.

even though as mentioned before i have too much wrong with me to continue this way, i never knew any other to cope through life,

I have plummetted recently through exhaustion worry and stress, the exhaustion is awful and so too is extreme sweating.

I have never seen this as a symptom of ss before, anyone else experience this.

its just way off the richter scale, and i am way past the menopause too.

even collecting few items before i go to the car has me so wet by the time i close car door i cannot believe it.

is all this a ss flare or melt down through exhaustion or what?

b


"Please God, help the ignorant!"

 

296 Posts

Broken  ·  14 Sep 2010

i would be most interested to meet others who suffer from sjogrens syndrome, in Ireland.  i live in the south side near Dun Laoghaire.

i am middle aged, interested in the Arts and nature and would welcome the opportunity to compare notes to make life easier for us.  I am a relative newbie for Primary sjogrens syndrome and maybe i need 'induction' classes!!!!

thanks


"Please God, help the ignorant!"

 

296 Posts

Broken  ·  03 Apr 2009

Those who wear ordinary specs and are photosensitive to sun etc.  I found GREAT 'over glasses' with full protection against harmful sun rays, which also keep out wind etc to a great degree, from NCBI.  I am thrilled.  I got the amber ones.

They were not expensive either.

Now a question - what are those glasses with film on them suitable for using the computer.  Would laptops give out the same difficulties as PC's etc.  I heard they did not, but I use the computer a lot and my eyes get VERy tired indeed, so much so I could fall asleep unable to hold the eyelids open

suggestions on that welcome.

Saw in my UK sjogrens magazine that a company in england has produced large unbrellas with black on one side and silver on the other to deflect harmful sun rays.

Great idea I think and might invest.

xxAnn


"Please God, help the ignorant!"

 

296 Posts

Broken  ·  13 Mar 2009

I was at the Lupus Centre London recently and the consultant told me there that a sjoggie woman emptied a puff spray perfume bottle and cleaned it all out and put in natural tear drops and every so often gave her eyes a blast with the mist liquid. He was very impressed with her idea, as I was!!!


"Please God, help the ignorant!"

 

4 Posts

arlene  ·  13 Mar 2009

hi claire,

thanks very much for your comments. i suppose i will learn more when i have my appt at the hospital. i will try the gum but it is my eyes that i am having trouble with. i will have to pace myself. i am working full time at the moment but i think i need to slow down now and get myself sorted out. i hope someone from here gets in touch. it would be nice but i am happy with the discussions here. i wish you all the best, keep well.

regards

arlene


arlene

 

21 Posts

Claire  ·  11 Mar 2009

Hello Arlene,

I wish there had been a forum like this when I was diagnosed. I hope you feel more hopeful reading about other people's experiences.

About the rash around your eyes...no, I never had anything like this. I have a lot of redness and soreness associated with the dryness...often look as if I've been crying when I haven't and very often look really tired. My eye specialist prescribed single application eye drops for me recently  and I find them better than using the bottle. She thought I might be reacting to the preservative in the drops. I use glasses with a coating on the lens when using the computer even though I don't really need them for sight. (The optician will know what the coating is.) This helps too.

For the dry mouth, I constantly drink water, and have recently started using biotene mouthwash and gel. I also use sugar-free chewing gum all the time.

The tiredness and joint pain go with the territory, I'm afraid. It took a while for me working with the doctors to find meds that suited me. There are lots on the market and you may have to try a few... Only you know how you feel and you know your body best so I hope you have a relationship with your doctors where you can tell them if something doesn't suit you. Regarding the tiredness, again its trial and error. I had to learn to pace myself and over the years have found a balance in activity that suits me. I used to get very frustrated with my lack of energy and then discovered that I was making myself more tired coping with my anger and frustration. Now I try to be kinder to myself and rest when I need to and it works much better. But it did take me a long time to get to where I am now. Friends can help... driving if I don't feel up to it or carrying trays in a restaurant...little things like this are great.

Arlene, I hope this is helpful. I don't live in Belfast, I am in Dublin but perhaps someone from that area will see your post.

Spring, I know I said I would get back to you with some practical stuff. Sorry it has taken so long. Hope you find this useful too. I suppose we need to remember that while we all have the same condition, no two of us are exactly the same. I think we all have to find out what suits us best. But it's great to be in touch with others who understand.

Best wishes to all,

Claire.

 

4 Posts

arlene  ·  11 Mar 2009

Hi,

I have just found this site and i am waiting to see a consultant. i have been tested postive for RA and my doctor thinks i have sjorgens aswell. Is anyone from Belfast? I would like to meet someone from Belfast. I am Canadian but am living here at the moment. Would anyone be able to tell me if they have a rash on their eyelids and underneath their eyes awell as dryness? I dont know much about this and am feeling very stressed out. I was reading all the comments and feel a bit better knowing I am not the only one. I am very tired most of the time and have very painful joints, so I am very glad to have found this site and all the info about this.

Arlene.


arlene

 

3 Posts

spring  ·  13 Feb 2009

Hi Claire

Thanks for your message. I think the thing that gets to me is that I'm missing out on my small kids and feel guilty. I had to have a good talk to myself and told myself to stop feeling sorry for myself and just get on with it. I have had 3 great days I felt normal. My new motto is count your blessings not your losses.

thanks again for your message.

 

296 Posts

Broken  ·  12 Feb 2009

I am glad to see an SS discussion up and running.

Went to a new rheumy today. I have never really worked and on disability pension since the 80's for other disabilities. I DID keep up VHI and as there are so few rheumys here I had to avail of that rather than the Med card I had. I paid Eur220 for the inital consult today. Half an hour, he yawned and drank his coffee, was monosyllabic and almost uncommunicatable.

I came away with little. The med I will start was prescribed in england and is not prescribed here as I am unable to take plaquenil.

I came away in tears, I have major other problems but the sense that he would not really engage with me, I was too intimidated too by his no eye contact and his refusal even to entertain a dialogue. He looked kind and gentle and I think he was, just, couldnt be bothered!!!!! It was the yawn that did it too. Like seeing Ms. Harney asleep in the dail debate, wasnt it she?

Better news though my mobility scooter has been sanctioned by the HSE and I have enough med points to be rehoused in a downstairs appartment.

I have zillions of things wrong with me but yes, I was an amazing active person before sjogrens hit, other things where happening prior to that but SS started in on top and then other stuff, but not related to SS but a syndrome my twin and I have.

I seem too, to be collecting autoimmune diseases like marbles.

Now, Plan B, stay away from Docs unless you absolutely, absolutely need them, say, on deathrow or infection or a broken bone, a script or a SMALL bit of advice, stick to a good regime of healthy living (not too healthy, have fun that is cos life is short) and be sensible and safe and good with your body.

I had plenty of plans eg writing that book I was half way through and with an editor working with me, keeping up studios etc - all gone. But the worst part is what serious or chronic illness does to you, realise you are human and mortality. You also realise who your friends are, who are kind and not and God forbid, I never knew anything about the 'staring population' until I got ataxic walking and dystonia and fumbling and jerky gestures. Once on a walk two older people commended me on how well my dogs were looked after! I jig jerk, grimmace, wear massive sunshades, hats gloves but I DO look after my dogs!!! they are chihuahuas, not great big gallumping, maneaters of rotwielers or whatever!

Hate the stares though, now thats a biggie!

x


"Please God, help the ignorant!"

 

21 Posts

Claire  ·  12 Feb 2009

Hi MC,

Thanks for your message about the "hardship fund". I spoke to my GP and pharmacist today about it and they are starting the paper work. I also discovered that Salagen which has been taken off the market here can be got from the UK (I think) under the same fund. So it's great not to have to worry anymore about losing that medication.

Spring, I know its difficult when you just get your diagnosis. I was diagnosed in 1987 and remember how devastated I felt at the time. However I am still here and I am very well at the moment. I know there are things I have done because of having Sjogren's that I would never have done otherwise. I mean good things...... while I would not say I am grateful for it and would never be glad that I have it, I do feel that I have taken opportunities that presented themselves that I might not have had time to notice if I had still been living at the hectic pace I was before I got sick. I realise that this might not mean much to you now and I am not sure if I would have heard if someone had tried to tell me this back then. I suppose what I am trying to say is that there is life after Sjogren's.

I am hurrying out now but will come back later with some practical information.

Hope this helps,

Claire.

 

3 Posts

spring  ·  10 Feb 2009

Hi Bren

Many thanks for replying it helped me alot you are so kind to spend time helping me.

I suppose I have 4 kids ranging from 24 down to 8 and a new grandchild

I am normally the one in control and since i have this i feel so guilty not being

there for my husband and kids. I miss running around doing everything and now

I can hardly do anything because i'm either so tired or in pain.

I just want to find a way of getting my life back I suppose.

 thanks again Bren for your words of wisdom.

Best regards Spring

 

13 Posts

Brenski Beat  ·  10 Feb 2009

Hi Spring

There isn't a lot I feel I can say to help you but just wanted to let you know that I read your entry and heard you.  On hearing that you are not as healthy as you would want can be frightening, I was terrified.  For the first time I understood that I was not immortal and although SS is not life threatening it certainly can feel like it.  Stress, worry and tiredness exacerbate SS.  Rest well, eat well, get exercise and you can feel better.  All the things we are supposed to do but never get around to.  Now, it will pay off.  After I relaxed a little (with the help of antidepressants) I am very much OK.  I am enjoying my family more because I am more appreciative of what I have and am aware that life is short.  I do not think this because I think SS is going to kill me because it won’t, nor you.  I think it because the shock of having to come to terms with my immortality has made me appreciate things more. 

I can suggest that you join the British Sjogrens Society and/or the American equivalent.  I am not a member but have heard that the info they provide is fantastic.  One thing I will advise you to do is NOT to do too much web surfing about SS.  Although you can find some good info you will also find some things that truly are not relevant to the majority of SS sufferers.  I did and I had myself in the grave in no time. 

I can understand your feeling of being alone.  It is a fairly uncommon condition and there is not support structure here in Ireland for sufferers so even your closest family members can’t understand.  You can look and act fine but you feel awful.  People can’t relate to that.  I am still alone in my family and friend group.  I am the guy 'that has some funny thing going on that doesn't let him have tears, big deal, who wants tears anyway, get a grip...'.

In summary, don’t stress, don’t worry, (easy so far, huh?), get rest, eat well, exercise (walks in the crisp clear winter air, smashing), treat yourself, talk to someone, join the British Sjogrens Society and as far as not having anything to look forward to, well look forward to not feeling alone.

Best of luck.

Bren

 

15 Posts

MC  ·  09 Feb 2009

Hi Claire,

I've been told that if your GP can give you a script for Biotene the pharmacist can give it to you - it's called a 'hadship fund', I think. Unfortunate name I know...

Their mouthwash is around €6, but the long lasting gel is at the around €7.50. Like you say they do work but...

good luck!

MC

 
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