Fibro or Sjogrens

[Persiankiwi]

Hi, I was diagnosed with fibromyalgia & chronic fatigue three years ago after a work accident. My Rhuemotogist referred me back to my GP as said had all tests & nothing else he can do except ask her to refer me to PA pain clinic in Brisbane ( been waiting months).

However I was visiting my parents in UK ( my mum has mild dementia) & had to go to their GP as my eyes were bothering me more than normal & half of my tooth fell out, also had itchy rash ( get a different one every month) & he said he thought I had sjogrens, he put some paper in my eye & asked heaps of questions. I get achy especially in joints, my head feels like it's going to fall off, had MRI to rule out ms & dementia as legs ache terribly & bad brain fog terrible in fact failed first test at numerologist but MRI came back normal. Can someone tell me how to tell difference. I don't want to go to GP & ask her until I'm certain. I also feel like something is stuck in my throats, have trouble swollowing, dry eyes, nose, mouth, odd metallic taste. Can't stand smells, loud noise or light. Any ideas please

[weathervane]

Hi there , I think its worth going back to the rheumy as alot of your symptoms would also indicate sjogrens. It can take a long time to get a diagnosis but you should push for further tests and help with the symptoms you are experiencing . Best wishes x

[stringstudio]

Sounds like Sjogrens to me . I have had it 21 years with same clinical symptoms (except the metallic taste) as you , but it has never shown up in my blood.

I lubricate and moisturise, and have removed all fragrance from my house.... even have fragrance free washing up liquid. Avoid fragrance, chemicals, preservatives etc

Good luck. You are not alone .

[Thinner1 in reply to stringstudio]

I agree with stringstudio. I also get the metallic taste and find my tongue coated. Unscented petroleum jelly on a Q Tip helps my nose. I wear contact lenses and have switched to the super moist ones. They really help. And I always keep a bottle of water handy for frequent sips. Fortunately more products are available to help dry mouth. I wish you good luck. Keep trying solutions until you find what helps you.

[Persiankiwi in reply to Thinner1]

Thanks for replies. Think I don't understand is if this UK GP can pick this up in one consult why hasn't the Rhuemotogist I've seen five times. He has a list of my symptoms n

[Thinner1 in reply to Persiankiwi]

Some doctors just need the numbers to support the diagnosis. Maybe you need to consult with another specialist when you return home or take the medical records with you to convince your current doctor. My doctor kept testing for 3 months until the numbers supported his diagnosis. He didn't give up.

[Jar1973]

I heard immunologists can be better at diagnosing Sjogrens so maybe thats worth considering with your GP? I live in Brisbane too and will be interested how you go and who you see. I see a rheumy for the first time 7 Feb so am thy s far undiagnosed but suspect Sjogrens.

[Persiankiwi in reply to Jar1973]

I've seen a Rheumatologist many times. I used to work at Greenslopes Hospital in the dispensary until I had a work accident in 2014. He diagnosed Fibro after suspected by GP. I saw Martin Deveraux at Sunnybank, doesn't charge the earth like some others & very through.

I was going to see Dr Heyworth Smith ( immunologist) after seen optician on Wednesday in Runcorn, she specialisers's in Sjogrens

[Jar1973 in reply to Persiankiwi]

Thanks...i am seeing Dr Laurel Young Rheumy in Redcliffe on 7 Feb, and am on waiting list at Prince Charles since JULY and still no appointment despite Cat 2! My GP saud i would likely be seen within 3 months...so much for that. The public system has me on wauting list at ALL northern hospitals and obviously everyone is stretched so am glad i opted for a private referral.

I dont have any muscle pain, just fatigue and a kind of tendonitis or inflamed sensation, in addition to joints feeling slightly stiff and burny. otherwise the usual dry symptoms that i am coping with. Have vascular symptoms too including mild petechiae on arms and redness oncheeks and forehead which doesnt 'flush' like rosacea. It is just always there but gets a little more prominent when i feel like crap.

I am managing the fatigue to a point but some days it is hard. Shortness of breath occurs pretty easily, just one flight of stairs so i feel very unfit despite going to yoga and gym regularly prior to my flare in July.

I dont think i have fibromyalgia or chronic fatigue as i dont have pain per se.

We shall see!

[Persiankiwi in reply to Jar1973]

Hi, I actually think she is the best rhummy in Brisbane and your very lucky to get an appointment, I'm sure she will be a help, she does really listen to her patients, every time I have rung there's been a 6 month waiting list at least and GP stopped me from driving for a few months as thought I had dementia but had mri and all clear.

My whole body has an ache but burning pain on soles of feet & in hips, joints in fingers and where my toes join feet, ankles, elbow and neck and sometimes feels like got two hot rods down spine, my arms & legs feel like lead weights. The fatigue is the one thing I really can't manage, gone from running 5-6k every day and 5 spin classes a week plus gym (2014) to using all my energy to walk from bedroom to lounge, its crazy. Had to sell our house we built as couldn't make the stairs or open/ close heavy wooden stacking door. I also struggle with breathing even just lying in bed doing nothing, doesn't take much to "get out of puff" GP referred me to exercise physiologist last September but she was worried about my breathing & sent me back to gp but she didn't think it was an issue, this was before Christmas and it's just getting worse. I'm going to see Dr Richard Beatty tomorrow at Manly as he is a GP who specialises in musculoskeletal/ fibro issues to see ask his opinion as really struggling with this breathing and I'm worried.

I have worked in hospitals here and NZ and have never heard of fibro, sjogrens or CRPS until last year, it seems to be hidden unless you or someone you know have it.

I hope you get some answers which I'm sure you will.

[Tally in reply to Persiankiwi]

Please could you keep me updated as your symtons are mine and I was diagonised 11 years ago with sjorens ...but so much worse now sadly.Good Luck

[Persiankiwi in reply to Tally]

I have noticed ( as I'm looking to see what my itchy rash is doing) that I have slot of small red dots on my chest & abdomen, when I googled it, it's called petechaie, there appears to be more every month. Anyone else have these.

[Jar1973 in reply to Persiankiwi]

Wow that is full on. Have you been assessed re your lungs and heart? I hope so. Respiratory medicine and cardiology specialists might be worth an opinion because u want to rule out interstitial lung disease or pulmonary hypertension etc.

When i emailed dr young i also sent a history of my symptoms (4pages lol) and she told secretary to book me in within 4 months. Maybe try that if u can drive now?

[Persiankiwi in reply to Jar1973]

I was on amitriptyline for sleep & felt odd so asked GP for ecg & heart beats too far apart ( side effect of amitriptyline) do stopped it. GP thinks breathing probs just fibro but this UK Dr thinks not so just have to see. Will try that with Dr Young. Thanks guys.

[weathervane]

Im in ireland and probably had sjogrens for quite a while until things came to a head when lymph nodes all enlarged and felt v ill . Rheumy went by symptoms and blood tests for diagnosis, though some people have to go through lip biopsy as well . I think i was lucky and hit upon a good doctor, maybe you could check out to see if there are any rheums who specialises in sjogrens in your area ? It is frustrating the length of time this all takes as it can take months for treatment to kick in as well. Xx

[wsmith]

Hi there, I too have the metallic taste. Way before I realised I had Sjogrens I became very fussy about a cup of tea. Had to have 'fresh' water nothing sitting in the jug or been reboiled. Now of course I know what the problem is...but back then my family thought I was going nuts. My sister who is in Brisbane and I (NZ) have different auto immune issues. Because she doesn't have dry eyes or mouth she doesn't have Sjogrens. She did have Graves' disease which is an over active thyroid, which makes you feel there is something in your throats all the time. After years of meds (PTU) they have reduced them because they suspect now she has dermamyositis. Check that one out. Skin rash which got to hospital stage, trouble lifting her legs, shortness of breath. She is also going through Prince Charles and waiting forever for MRI's to check her heart, arms, legs, etc. She has found bentonite clay really helpful for her skin. She has also gone on a complete health kick and not doing too badly. If you want to talk to someone I can pass on her details. Good luck with everything.

[wsmith in reply to wsmith]

I did mean to say the metallic taste I think is from the change in your taste buds. Can't drink red wine with food either and lamb now tastes odd.

[Persiankiwi in reply to wsmith]

My husband & especially two teenagers think I'm crazy, I keep going to throw milk away as tastes "gone off" tonne but they say not, radio in car & tv seems loud but they say not, can't stand bright light even under doorbof bedroom. I fractured my back in a work accident in 2015 and thought my weak legs because of that, can't seem to lift L one especially and keep tripping up stairs & falling. Been told umpteen times got depression & it causing symptoms but I know it's not. My rash not too bad just itches like mad & different sort of rash every few weeks. I stopped all my meds except diazepam & ibroprofen because of my job know what they can lead too.

I'm from Auckland and miss my best friend heaps but she's been over 4 times so that's good. I will google it thanks.

[Hidden]

Hi I live in Scotland. I was initially diagnosed five years ago with RA because of bilateral joint pain and swelling and high inflammation levels in blood plus a positive Rheumatoid factor. I was already hypothyroid but didn't realise this was autoimmune. When I first saw him the rheumatologist asked me if I had any symptoms, no matter how seemingly unrelated or odd, to report. I recall replying that I'd had a very nasty taste for three weeks that made me miserable and I could find no reason for. Also soles that felt like I was walking on burning coals every morning.

A few years later, after many severe drug reactions, he took me off everything, saying that as my RA was non erosive to date, we would just "watch and wait".

By this time I had extremely painful and uncomfortable burning pins and needles in arms and legs and burning mouth. My eyes were very dry so I was diagnosed with secondary Sjögren's and put on drops and lacrilube.

Finally last year my ANA turned clear positive but negative for specific SS tests so I had a lip biopsy and this was very definitively positive for Sjögren's. I'm on a new immunesuppressant now, my fifth.

The new rheumatologist is pretty confident that I had primary Sjogrens rather than RA. I have nasty tendinitis but my main symptoms are the widespread and often very painful neuropathy and resulting in numbness of feet and face, tinnitus and ballance problems. The new medicine has completely sorted out the horrible taste at last but I still have swallowing problems, GERD and severe constipation. I also have Raynauds and am being assessed for possible Scleroderma as well as Sjögren's

I can tell you that it's pretty unusual for a GP in the UK to think of Sjögren's unless you already have a connective tissue disease. Most of mine have barely heard of it let alone thought of it as a potential diagnosis. I really hope that you get a good rheumatologist in Brisbane who can help you.

It took four rheumatologists and a lip biopsy to get a rediagnosis for me. The previous one told me I didn't have a connective tissue disease and suggested a rare cancer. Whereas my gp was always certain that I had a rheumatic disease. So I think I'd run with the English GP if I were you.

[Persiankiwi in reply to Hidden]

I have just seen a UK dr in Brisbane who I've been seeing for fibro and he ordered blood tests etc and sent me to optometrist who gave me very thorough dry eye test which was positive.

It's funny you mentioned constipation, I've had IBS for year plus swallowing problem, feels like I have something stuck, I even gag on nothing. I'm now getting electric shocks in my jaw area now shooting up my L ear

The burning feet bothers me most late afternoon night, it's there all day but worse at night.

Think I need to find new Rhuemotogist.

[Persiankiwi]

Is it's people's view tha a Rhuemotogist is better managing djogrens/fibro cfs or an immunologist. The reason I ask is I've seen two Rhuemotogists, the first one for fibro only, he told me tai-chi & looking in a mirror could help ? Next better but referred me back to GP 12/16. Noticed only Dr listed on Tassa website in Qld is immunologist. In so much pain with feet/ leg/ headache pain been crying on & off for a week. Optometrist gave me new eyedrops hylo forte & not doing anything, can still feel my eyeballs stick to eyelids. Systane seems more soothing to me.