Hello everyone. I went to the dentist this lunchtime and she gave me a clean and polish and she has told me she is referring me to the hospital for sjorgens and something else but i can't remember the name ,it was liper something. Last night i didn't sleep very well and tonight i feel like i have been hit by a train. This afternoon i was down the hospital so hubby could have his pre-op because he is having teeth out Saturday and while i was down there with him i had my bloods done as well as they hadn't been done since before Christmas. Well i have had my dinner,but i am so very tired and down. I could just sit here and cry i think it is because i am so tired. I just wish for once something lovely would happen. I am wondering what next is going to happen to me.I am sure i will be better tomorrow,but just not tonight.xxxxx
Sjorgens and other things.............: Hello everyone... - NRAS
Sjorgens and other things.............
I am sorry to hear your not too good at the moment, what with what's going on with your body, hubbies's troubles, visiting the dentist no wonder if you feel like a well rung out rag!
What you need is to sit quietly listening to some soothing music and let everything slip away, what was that 'Fat chance', yes I know it did sound idyllic. Try and have a quiet day tomorrow to recoup some batteries ready for the weekend, when you have to put your nurses outfit on for hubby. Gentle hugs to you from me.xxx
He is having four teeth out and he won't be driving afterwards so i will drop him off and then wait for the phone call to go and fetch him. I am just tired from everything combined with lack of sleep and i am down so very down.If i sleep tonight i will be a different lady tomorrow..xxxxx
Hi Sylvi, so sorry you are feeling so rough. I also have Sjorgens which gives me a dry mouth and dry eyes. Have you been checked for Vit B12 deficiency at all? It can cause tiredness as you don't absorb it from food. I would think a blood test would pick it up. It did with me and I now have 3 monthly injections - I always know when I am getting near to having the next one as I get very tired and run down but once I have had the injection, I could take on all comers!
Hope hubby's teeth pulling goes ok. Not nice.
You are such a lovely person and you give the rest of us so much support - we're sending you lots of hugs and love.
Remember what Scarlett O'Hara said: "Tomorrow is another day". It can only get better. Have a good night's sleep and try to relax as much as possible. I don't know whether you like a drink occasionally, but I find a half bottle of champagne does wonders as a pick me up and makes me feel a lot better - must be all those bubbles going up my nose.!
Love LavendarLady xx
Evening my darling friend, don't drink and yes tomorrow is another day and if i sleep i will feel brighter. I have had a few nights downstairs just laterly. I will ask my rheumy about b12 deficiency when i speak to her next.l know before the night is out i will cry my eyes out and it will help me even if it leaves me exhausted. Thank you for your lovely words.xxxxx
Hi Sylvia sorry your feeling so tired and down...sending you big hugs...hope you feel brighter tomm...we have a lot to put up with. A good cry helps a lot...I have sjorgrens I oftern wonder whats the worse one for me...some days the fatigue can really get me down...wish there was something to take to give us energy....keep cosy thinking of you Nicola 
xxx
Hi Sylvi, so sorry you are so down and tired. I am feeling bit similar, completely exhausted and having to push myself hard to get anything done. I also have Sjogrens, very dry problem eyes and dry mouth etc. It also causes me severe digestive problems because of the dryness, and just lately I feel completely useless to my husband and family because I am so not the person I used to be. I try so hard to get going but I am afraid all this pain and exhaustion has floored me.
It seems most of the things I love to do have been overcome by my problems. I used to love knitting, sewing, crochet, now virtually impossible. I love my baking, hands useless, hubby got me a wonderful kitchen aid stand mixer for Christmas cos he loves his cakes, but I cannot even put the bowl on/off, so it's a joint effort now.
I have been ordering my seeds today for the summer flowers and that has cheered me up a bit. I have a perching stool for the greenhouse and me and hubby do all the flowers between us usually. We are having a 3 ft high raised bed built along the patio to enable me to do that bit myself with very little bending. The rest of the garden is beyond me now though. I am gutted about that because gardening used to my total joy once upon a time.
Who are you seeing for the Sjogrens, my Rheumy looks after me regarding that in addition to my RA. Do you have trouble with your eyes? I was given drops to keep my eyes moistened which don't help much and I am currently on steroid drops. I have Biotene gel on prescription for my dry mouth and use the Biotene toothpaste and mouthwash also but to be honest it does not help that much. I sip water all day long.
My dentist sees me every three months also the hygienist because I desperately need to hang onto my teeth!! My main problem is my eyes, the Sjogrens has damaged the surface of my eyes and so sunlight and headlights are a nightmare to me, blinding me. I have had to stop driving at night completely now which is a pain, and I am just in process of getting some new polarised driving glasses which are costing a lot of money but necessary. I am the sole driver now as hubby got macular degeneration and has had to stop altogether. So until the lighter nights come we are under threat to get home before dark, a big stress for me.
I hope I have not gone on too much about all this. I understand completely how low you are feeling at the moment because I feel exactly the same really. I feel like my former life is being systematically removed from me. I have put up a good fight but feel I have given in now sadly.
Anyway, we must try and pick up if only for our families, but it's getting hard. Our 11 yr old grandson stayed over the weekend and was a total joy to us, he cheered us up no end, so we are looking forward to the next time he comes to stay, something to look forward to. Spring will come eventually as well and that will be a joy as well.
Hope you feel brighter soon, take care, lynda x
Oh you poor love hugs coming your way. It seems you have so much to deal with rest up now and hopefully tomorrow will be a better day love me xxx
Thank you all for your thoughts. I can't ever remember feeling as washed out and tired as i am tonight. I am struggling to concentrate as well and my eyes are all over the place. I ache as well which doesn't help either. A night between the sheets should help and tomorrow i should feel brighter. I think it is just lack of sleep causing this malady.xxxxx
Hello
Above drys out eyes and mouth, so will be checking lymph nodes You will find a good explanation in the NHS Choices pages
Good Luck
BOB
Thinking of you , Sylvi and hoping tomorrow will be a better day for you. x
Oh Sylvie, wish there was a magic cure for all of this but in the meantime sending you a big hug xx
Oh Sylvie, wish there was a magic cure for all of this, but in the meantime sending big hugs xx
Oh Sylvi I hope you get answers soon and that something wonderful happens to lift your spirits. It is hard sometimes to get out of the down feeling. I do the Happy Gilmore thing and try to go to my happy place! Talking to the grand kids or something usually helps me. Good luck
Good morning all. Well i have slept fairly well for me anyway. My mouth is very dry but never mind i am not so tired at least. Another day another dollar as they say. Not sure what i am going to be doing today probally not a lot. So i wish you all a good day. Xxxxx
Hi Sylvi glad to hear you are abit brighter today, its a struggle aye, you just want to be normal, but the body is using all your energy just to live with this disease, leaving none for living and so that is why u r weepy (exhausted actually)I find after a busy time I need to go to bed for the day and catch up. all the best and look after you!!!!!!!!!!!!!!!
Hope today is a bit better for you. resting and giving yourself some me time may be what you need. A good book, a movie, a chat on the phone with a good friend, do some things just for you.
Thank you so much for caring.I am going to take it easy as my head doesn't feel like it belongs to my body at the moment.xxxx
Oh I understand that feeling. When I have done wayyy too much and I am to the point of more than exhaustion I get to the point where I feel detached and unreal. Rest and look after yourself and be kind to yourself, we are allowed to fall over and have doona days. hugs
Hello my lovely. So sorry to hear you're having a tough time of it. It's horrible when you get a prolonged fit of the doldrums isn't it? If you need to have a good cry then go on and do it - it's therapeutic after all. You've given enough people comfort and advice to know deep down that this will pass. Blame it on the weather and the time of year. Hope hub is OK once his teeth are out and you can both kick back and rest. Your GP or rheumy should be able to give you eyedrops and artificial saliva to help make the Sjorgens more manageable. You'll probably find it waxes and wanes like the RA. In the greater scheme of things the symptoms aren't too difficult to live with but I know how dispiriting it can feel to have yet another "syndrome" to add to the list. Keep that lovely chin up my darling xx
I think i already knew that that was what i had as i have had problems with my eyes for a while Now. I have had my eyes cauterised a couple of times and i won't be having them done again thats for sure. This is the first time any profesonal has actually said i have it. I suppose that will mean more treatment. I am going to just relax today and just take it easy. Hope you have a good day my friend.xxxx
Hi Sylvi, hope you had a better night's sleep and feel a bit more with it this morning. I use artificial tear gel which I get from our lovely pharmacist. The dry mouth - can't do much about but I do drink lots of water and try to keep hydrated which I think helps. It is worse at night as I have terrible sinus trouble as well so end up with a very dry mouth and have to drink water which then means a trip to the loo and so on and so on! The GP did try me on tablets for the dry mouth but found them less than useless and if anything made it worse.
Not too good myself today - had a bad night with a hand and wrist which were swollen and painful and very hot. Feet also very painful as are shoulders. Oh well, we carry on as best we can and try to keep going. Hubby looked at tearful me over breakfast and asked if I was ok! I nearly brained him with the kettle. Men can be so insensitive at times.
Keep smiling. We are all rooting for you. Lots of love LL xx
LL i am so sorry you had a rough night,i wish i could say something that would make things better for you. My head is not very clever this morning. I can't tell you what it is to be honest. I had a meneires worry earlier on this morning,so i am hoping that that doesn't want to rear its ugly head today. I already have eyes drops and i have had the eyes cauterised in the past. xxxxxxx
So sorry to hear this Sylvi. I've had a flare recently after a long time without, and I can really empathise with the shock and disappointment at having yet another setback. Sometimes I, maybe you, feel that you're just starting to put your life back together when you get another blow. Seem to be constantly re-building. I hope your hubby is ok after his extraction, I've got much delayed dental treatment coming up on Friday and I will plan to hibernate for the rest of the day with radio and a good book.
Big hugs to you, I hope you're feeling better this morning
He is having them out on saturday so he will not be well in the evening thats for sure.I am not sure what is causing my problems Cathie as i have not only ra but fibro/cfs as well as sjorgens to add to the mix. I am sure something will come out in the wash.xxx
Hi Sylvi,
How are you feeling now? Lack of sleep makes everything 10 times more difficult to cope with doesn't it.
I have a feeling that I may be developing Sjorgens. My eyes can get extremely painful from dryness. At the moment I'm just taking drops for my eyes and occasionally have had to use antibiotic cream for scratches. The GP hasn't suggested it is anything other than 'just one of those things that goes with getting older' but I do wonder. My eyesight is deteriorating quite rapidly and I'm becoming more sensitive to light too. I'll be interested to hear how you get on.
I hope you get a good night tonight.
Judy xx
Judy,I think now i sit here and think about it, i have had sjorgens for a while as i have had trouble with my eyes for two or three years now and they have been cauterised to stop the tears going into my throat. My eyes are very poor and i am very sensitive to light. I wear visors during the summer to help my eyes. I wear the biggest frames i can get to cover my eyes.
I slept fairly well last night even if i had to get up for the loo and a drink. I find my mouth and eyes are very dry and sore in the mornings. I haven't had a particular good day, still feel very tired and not with it today. My right side of my face feels sore for some reason.
Hope your ok today Judy love me.xxx
Hi Sylvi - it's me Tilda. I really wanted to tell you yesterday that you have my sympathy but I had to get myself sorted first. Sjogrens is just another of those yiucky things that seem to confound us really. I have been told that I have it too because of my extremely dry eyes and slightly dry mouth. I'm not entirely sure this is right but it's what my GP, optician and rheumy say anyhow.
I think if people get RA first then it's called secondary Sjogrens. This makes some difference because secondary is usually noty as severe as primary Sjogrens - but then of course with secondary still have the core disease that is RA to cope with so this pans out fairly evenly. And I'm not sure if knowing more about all these conditions is useful to everyone but it has certainly helped me to come to terms with things a lot better. It is also possible to get two of more different diseases and I think this is known as Mixed Connective Tissue Disease - maybe that's what you have as your Sjogrens sounds a bit more heavy duty than mine, which is only affecting my mouth very mildly at present.
I have learned quite a lot about all these diseases since I've been away and to be honest - it's been a real learning curve and one that has given me a lot of perspective on my own problems. There are so many people who get autoimmune overlaps. When I was a regular to this community I used to think I was weird - and that everyone suffered so much worse than me with RA that I didn't belong here. Now I know that there are other things that people suffer from that are just as bad or worse and that having no one thing severely but lots of things quite mildly doesn't mean that life is any easier to cope with. So I've come back from a rather dark journey feeling dry eyed and covered in hives but in a much stronger place than I was when I left.
I hope things settle down soon for you - it's horrible when more and more things pile on and you feel it will never end I know. But it will and hopefully, as Spring approaches your spirits will rise again too. Tilda xx
Thank you Tilda.xx
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