newly diagnosed with SS. i live in scotland uk

hi there everyone .,,i am new to joining this site and was recommended from someone else. i attended my hospital in arpil this year and told i had SS and handed a leaflet and told to come back in 6 months. i take Hydroxychloroquine twice a day. i also take thyroid tablet 75mg daily. i have been on anti depressants for nearly 2 years and on the highest dose i can get., i have been told by my G.P.often that i might need a vit b12 injection but then he refuses it saying i am border line for it and don't need it.

i have to go back to rhuematologist. on 12th september to see how i am/.i think?.

i have chronic fatigue, as well as aches and pains, dry tickly cough when i go to bed and i suffer nose bleeds due to the lining if my nose thinning, so i have creme for that. some night s i really struggle to sleep. others i can sleep and sleep. i recently went to the neurologist for nerve testing as i get pins and needles in my hands and fingers and my hands are sore to use.but i do not have a trapped nerve.. i cant walk far because i get so short of breath. and i am struggling to lose weight... i have started drinking lots of water to help me with my dry skin. which was a total pain for a while... i get really sore tongue and gums and mouth but just persevere...i don't know what will happen in september when i go back to see the specialist at hospital. . .. i have a huge list of symptom,s for him lol. sometimes my face goes numb and i can't drink out a cup but it does go as quickly as it comes. i don't have a very good memory and can't work out things as easily as i used to,i have no concentration span and have recently gave up driving mainly because i cant concentrate and also i get too sore driving... left leg goes very sore and heavy... i'm trying to say as much as i can so anyone can advise me more hat to expect when i go to hospital..

anyway i think i have said enough...... thank you for reading..... and hope to meet many people .xx

12 Replies

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  • Oh wow! You are almost a duplicate of me, except I've been diagnosed with fibromyalgia not chronic fatigue. I take Plaquenil, Thyroxin, anti depressants, as well as celebrex for muscle pains etc. I have the tickly cough in bed, Short of breath on walking, can't lose weight, dry skin, dry eyes, bleeding nose, sore tongue and mouth ulcers, had to give up driving and work because concentration and thought process no good. I had the same thing as you, just given a leaflet and told to ask the chemist for eye drops. I don't think Rhuematologists are really any good with SS. Personally I think we should be under Eye Nose and Throat doctors at least here in Australia. I can't tell you what to expect because I think every country is different but here we have only one rhuemmy for a population of about 250,000 people and he has a one day clinic once a week, so I never see him. But thank you so much because sometimes it feels really lonely being the only one you know with the same problems.

  • wow...someone nearly same as me yeah..what a coincidence eh?...Plaquenil is what i take it has 2 names lol (Hydroxychloroquine),or so it says on my box......

    yes i got diagnosed with SS in april and mt first follow up appointment is in september...but yes with Rhuematologists, they might not be the best to help..i did get my nerves tested 2 days ago and they aren't blocked...i do have eye drops, and nose creme, but the shortness of breath not losing weight and pain are worst.....i have written a list for my hospital visit, to see what they do or say!.

    my GP for a while has been deliberating wether to give me vitb12 injection or not ..i also get tested like every 2 months for diabetes....i told my doctor the other day at a visit i have lumps on the inside of my arms at the elbow and asked if they were muscles and she wouldn't commit to an answer all she said was see doctor at hospital about it ......

    the worst thing for me is that i'll say to ids ok we will go do this, then within half an hour i'm shattered and need a sleep or lose enthusiasm to leave house and they get so annoyed....

    keep in touch....i am gobsmacked you have virtually same symptoms.....do you get a numb face or tonuge too?...

  • Good luck. I hope your rheumatologist is helpful. Have you tried Biotene gel which can soothe your dry mouth for a while. You might try an automatic for driving, left leg not used and you might be able to cope with short journeys anyway. I believe there is an assessment centre in Edinburgh which assesses disabled drivers if you want reassurance - speak to your GP if you are interested.

    My rheumatologist recommended amitriptyline which you may not be able to take with your anti-depressant but that has improved my sleeping pattern quite a bit. It can affect your dry mouth but the 10mg dose I take seems OK. The lack of concentration can be your anti-depressants - talk to your doctor about alternatives.

    If I have a range of problems I sometimes write them down and offer them to the doctor and then let them deal with them according to their priority. With any luck they may make it onto your file for future reference at least. Some doctors like it, others don't so don't push it, with a condition like SS building a good relation with your doctor is really helpful - it isn't going to go away.

  • hi and thanks for reply.... i dont always have sore mouth it more annoying when it is though. i have a list for my doctor when i go to hospital next month.. hope he prepared to do somit for any of it .. and i'm not very good with tablets. i tend to be sick with most and as for pain killers the strongest i can take are cocodomol...lol.....thanks you.xx

  • Hello there

    I'm also newly diagnosed with SS (and am in the UK) as of the beginning of August although I have had some kind of autoimmune issues for the past 30 years! I saw a lovely consultant (I'm in the SW of the UK) who specialises in Sjogrens (I suspected I had it for a while but it took me almost a year to persuade the GP to refer me despite my written list of symptoms and known antibody status!) My main problem has been with my throat and I was misdiagnosed over a year ago by an ENT doc and put on omeprazole - the rheumatologist put me on Salagen (pilocarpine) and that has been brilliant for me. She offered me Hydroxychloroquine as well but I turned that down for now - I'm due to go back in 6 months like you when we'll discuss that again. I need to lose weight which I find really hard: diet doesn't seem to do much (I actually don't eat unhealthily or badly although you wouldn't know that to look at me!) so I need to up my activity levels but as soon as I walk anywhere I feel totally exhausted so I'm not sure how to do this. I am going to join a gym next week where I can use a nice pool and also try tai chi and yoga classes. I apparently have dry eyes according to the Schirmer test but they don't bother me particularly although get sore easily.

    When are you due to see your consultant again?

  • hiya,

    i go to see my consultant on wednesday if this week the 12th september..... i have my own doctor prior to hospital visit due to an infection on my foot that i cant stop itching and i am now going to be on yet another creme for this as not other have worked so far .and it is so frustrating.

    i was at dental hospital last week with toothache from a front crown. i was up for 2 days in agony and wouldn't let anyone near me i was in so much pain. so eventually went to dental hospital. they took 3 hours under anesthetic to remove the tooth. i kept wincing in pain, eventually they noticed after all my injections to freeze area that i had a blood vessels or something in the way. so they drained it and then took tooth out no problem, when i went home i slept solid for 3 days only wakening 4 times to take pain killer sip of water and go back to sleep.. i can't wait to see what is said on thursday. i am applying to my local housing for a new house without stairs but considering the government say i am not ill i don't know what will happen with this ,but i find the stairs to my apartment a night mare and i am out of breath when i get up them,it shatters me ..

    i still just feel isolated and alone.. when i went to dental they have said they will take me on as a patient due to helping the students. and also they will monitor my diet more and help with that side of things, so my gums stay healthy ..it the only support i have have.........

    and i totally sympathize with you and how you feel. i have had years of going back and fro to doctor with pains and tiredness to eventually it was a locum who sent me to see a consultant. would be good to keep in touch,,thanks for your reply .xxx

  • Hello!

    I've just found this site. You sound exactly like me! It's so hard to find people who have primary sjogren's syndrome. I was diagnosed in my late 20's and am now in my mid 30's. I have an awful dry mouth, ulcers at the back of my eyes, debilitating chronic fatigue and pain and the list goes on.... I also cannot concentrate - I haven't read a newspaper or enjoyed a tv programme for years and when I go the the cinema with my husband I can't concentrate on the film. Life is hard with sjogren's but I really hope my immune system will calm down and give me a break. I see a nice consultant - the specialist in sjogren's syndrome for birmingham uk - but unfortunately he can't offer me much as I've tried most drugs with no help. Hopefully they'll find something for us soon!

    Hope you have a good day. I've found living day to day is best.

  • aww my sympathies are with you. my kids think i don't listen on purpose and so does my ex partner one of the reasons we split because i don't listen to anything. trying to explain i am not not listening on purpose gets me no where.

    i would love like everyone on here i guess is a normal life. when you get the flu once every few years the odd tummy bug and thats it. .. i wish you well i really i do, i am holding out more hopes for my next consultant appointment this time that he can help me more instead of handing me a lealfet then saying see you in 6 months...

    good luck hun x

  • I have had various symptoms for many years going to ent , eye and oral specialists. None of them picked up on my problems.My local GP suggested I had depression.!.Along with the fatigue dry dry skin. Luckily a new GP noticed my CREST bloods and looked over all my other problems and sent me to a rheumatologist. Hooray SS but they don't seem to think it is much of a problem. One Dr said you will not die of it. That was that!It is horrible and I seem to always have something driving me nuts. Plaquenil and pilocarpine have helped a little. The Biotene mouth wash and gum help. Regular visits to the Dentist and podiatrist (the dry skin on my feet has caused problems). I think I am lucky that I have HBF and I am a pensioner and can manage just to afford what is needed.

    Good luck with your appointment.

    y

  • Hi, this is an old post but I came across it doing an online search and wanted to add info that may help. I'm in the U.S.A. And was diagnosed 3 years ago. Think I had it for about 10 years prior though. My fatigue right before diagnosis was so bad at times I could barely speak or feed self. Was in emergency room twice in one week because my thyroid was giving out and heart rate and blood pressure all over place. It was bad. Had most of the symptoms you all list. But I made major changes since being diagnosed and life has been very good. Hopefully this can help.

    Stopped drinking pop/soda, including diet. If I slip and have one I notice my joints hurt. Not worth it.

    Got rid of processed foods, keep sugars under 24grams per day, stay away additives/preservatives.

    Eating a healthy diet with lots of omega-3s. I take a fermented cod liver oil too. Green pasture. Also take vitamin d, watch my iron closely, and take daily probiotic with 10 million CFU. Don't get me wrong I still have junk food, but not as much.

    Using a cool mist/water-based air purifier helped greatly with dryness. Got rid of my dry cough. I run it at night too.

    Make sure no fans or vents blow towards you. Check position of your bed too. Use large wrap around sunglasses while driving. Keep brightness setting on tv, phone, computer low.

    Preservative free eye drop, biotene toothpaste and rinse. Drink lots of water and add lemon to stimulate salivary glands.

    Move everyday. Break a sweat everyday. This helps rid body of toxins, fight depression, and help you sleep. I workout by dancing 2 hrs.

    Reduce stress!!!!

    When eyes really dry, lye down in dark room, put cool wet washcloth over eyes and rest for 15 min. Use saline cream or spray for nose.

    Hope this helps. I've been on hydroxyxhloroquine for 3 yrs but these changes huge help.

  • I also stick with fragrance free, hypoallergenic stuff and use products with safe ingredients. I use EWG's skin deep app to check. I try to throw as few bad things at the immune system as possible. Sending you all best wishes.

  • Lol one other thing that was huge help when first diagnosed. Had severe hip/neck pain and numbness in hands/arms. Another SS person suggested Classical Stretch the Esmonde Technique. There is a specific stretch routine on that DVD for pain relief. Was game changer for me. Also went to occupational therapist for neck/hand. Can find a lot of the exercises they make you do on YouTube for free. Helped a lot. One is raise arm straight above head. Make tight fist count to ten. Release fist into wide open hand/spread fingers hold for

    Ten. Do 3 sets of 10.

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