Do I have Sjögren’s?

[Missspringsummer]

Can you have Sjögren’s without having a positive blood test or positive lip biopsy? I have an extremely dry mouth, dry eyes, all over pain/aching, fatigue, and sleeping problems. I have been diagnosed with fibromyalgia because of the lack of positive tests but my dry mouth is so bad and it’s been going on for two years now with no respite. I don’t know of anyone else with fibromyalgia with a dry mouth. Doctors not interested now I have been diagnosed with fibromyalgia. I feel my symptoms point far more to Sjögren’s than fibro. I have been prescribed pilocarpine which I take every day and cannot do without. Anyone else in this situation?

[Bookblue]

I had never heard of Sjogren's until I saw a rheumatologist about my terrible all over joint pain. Within 5 minutes of listening to me describe my symptoms ( pain, fatigue, dry eyes, skin cracking in tiny spots ) he gave me his suspected diagnosis. Blood tests proved negative but he said this was common and it could take 7 years for a diagnosis that way.

I was so relieved especially when he said " don't worry you are not going mad" which quite frankly I was beginning to think after years of visiting GPs and getting nowhere. He prescribed Etoricoxib for joint pain as years of taking Naproxen had done me no good. I also got help from my optician regarding the dry eyes. I think it will be a long road, but at least a diagnosis helps. Push to see a specialist would be my advice. GPs are primary carers ..... good luck 🤞

[Bookblue in reply to Bookblue]

Forgot to say I am in the UK.

[Missspringsummer in reply to Bookblue]

Thanks, I saw specialist two years ago In Bath but she seemed to be completely fixated on the negative blood tests and diagnosed me with fibromyalgia, even though my mouth was so dry I could hardly speak without using a dry mouth spray every couple of minutes. She did prescribe the pilocarpine, which my GP thought was ironic! Looks like I’ll have to wait a few years for a diagnosis then 🙁

[gbeam in reply to Bookblue]

that is what happen to me, i was so lcky to see a rheumatologist who knew the symptoms of sjogrens. otherwise i could of still been suffering with out the diagnosis

[Zara-LouiseD]

Hi, I never have positive blood tests but I did have a positive Schirmers test which is where they put blotting paper in your lower eyelid and measure the wetness on it after about 5 mins (truly unpleasant!)

My rheumatologist was not at all concerned about it and told me that Sjogrens isn’t a condition but a collection of symptoms that occur together (isn’t that the definition of a condition?) and he just gave me recommendations for eye drops and told me to keep a bottle of water with me etc.

Have you asked your dentist what their opinion is? Mine reckoned I have enough saliva production even though I have trouble swallowing bread and chips..... but it might be worth getting their opinion on it as lack of saliva can cause problems with your teeth.

I have psoriatic arthritis and a mild connective tissue disorder likely SLE.

[Missspringsummer in reply to Zara-LouiseD]

Hi my dentist confirmed my mouth is very dry. I too have problems chewing dry food like bread and chips. As I have tablets for the dry mouth I can cope but the worst problem is stiffness and aching all over my body which seems to be permanent (doesn’t come and go). Makes me wonder if there is some sort of connective tissue problem going on??

[Zara-LouiseD in reply to Missspringsummer]

I’m not a doctor, but as I understand it Sjogrens is often secondary to another autoimmune condition, so it seems probable that there is something else going on.

I hope you can get a diagnosis soon so that you are able to get the right treatment.

I was lucky in that I had private health insurance through my job when I started with symptoms of psoriatic arthritis- in fact I believe it was a flu jab my employer provided that triggered it! My experience of private healthcare is that you get more definitive and quicker actions/tests/diagnosis, where the NHS doctors never seem to want to commit to anything except blood tests (I’m in the U.K.)

Even though I have some quite obvious symptoms of SLE my bloods are always negative for the antibodies that they expect to see. So the best I have is an acknowledgement of symptoms and a vague diagnosis of a mild connective tissue disorder, likely SLE....

[Missspringsummer in reply to Zara-LouiseD]

I’m in the UK too. I do already have an autoimmune diseases (type one diabetes) so think you’re probably right. My bloods for SLE are always weak positive, GPs don’t seem to be concerned. Maybe I will get a private consultation then. Thanks for your advice.

[stiff19 in reply to Missspringsummer]

This really must change and clinical presentations be key when so much does not always show in bloods. It’s infuriating for life to be so disrupted and altered with symptoms, yet once bloods negative to be told fibro or left to get on with debilitating symptoms.

Symptom acknowledgement does not help, I’ve had symptoms acknowledged told not fibro for sure then tests show nothing and so told fibro. Diagnosed fibro many years yet many new symptoms do not fit with this but once labelled it seems to be a one for all and anything diagnosis . There is no interest but needs to be as many times misdiagnosis leads to more suffering and damage and prevention as important as cure. This really upsets me so many people going through crazy long journeys detrimental to their health. Symptoms are symptoms not only exist if show in bloods. Good luck

[Missspringsummer in reply to stiff19]

Thank you. I agree with you 100%. I presume by your name that you are stiff all over, just like me! I’ve just found out today I have a bad case of greater Trochanteric bursitis and Iliotibial band syndrome. Also osteopath has ordered me a neck collar which I will have to have taped on to relieve pressure on my neck muscles. I’m sure this is not all to do with fibromyalgia! I have symptoms of mixed connective tissue as well as Sjögren’s, just wish I could get a definitive diagnosis . X

[stiff19 in reply to Missspringsummer]

Yes me too it’s so demoralising. I have symptoms of different varieties and all cane on with real bad flare of something and have ever been right since. Does not fit with my years of perception of fibro at all. Really need a good rheumy but under a neurologist but fear neuro problems may come from whatever this is affecting me but I’m no doc and my symptoms seem to fit many things but finding what 🤷‍♀️

I’ve been told by docs a disease but what? Maybe vascular def not fibro then fibro, motor neurone, scleroderma seeming on inside not outside, with raynauds erythmyalga and uticaria thrown in , muscles not turning off from contraction I could go on.one doc said I need a doc whose interested in getting to bottom of this but I know that but finding that sort of doc 🤷‍♀️ I no longer visit go as just seems pointless, everything is just a virus or fibro, facial probs now over a year gps said Bell’s palsy then blepharitis then fnd 😡 all ruled out by optician and facial specialist. It’s just downright disheartening and simply ludicrous, I know diagnosing can be difficult but gps just demoralised me and can’t face going so get by. Ent took most interest in symptoms and referred to neuro but otherwise just on own. Lost all faith and hanging in there with hope but that doesn’t help symptoms. Rheumy also discharged me long before things worsened and I just can’t understand other than they found me difficult because my bloods not showing anything🤷‍♀️ I wouldn’t know I just have to take their word for it I’ve never been kept in the loop even after requesting many times to be sent test results and copies of letters. If you speak up your awkward or mental problems and depressed 🤷‍♀️

Things need to change, nhs do great things but also absurd. I do hope you get answers and things in nhs change 🙏we deserve better I feel.

Best wishes x

[bookish in reply to stiff19]

Hi, with that lot (my sympathies) I would hope that your Neuro will do small fibre tests. If you haven't already seen it, try Dr Anne Louise Oaklander on YouTube - Small Fibers, Big Pain (Radcliffe). 50% of fibro diagnoses are actually Small Fibre (Poly)Neuropathy, which you may be able to do something about (especially if you can work out which cause/s you have). We definitely deserve better. Best wishes

[bookish in reply to Zara-LouiseD]

Hi, I think now they are far less likely to say that Sjogren's is secondary as it is serious and systemic, but you are right that autoimmune conditions commonly co-exist which is one reason to look for underlying causes (down to us, obviously!). For Sjogren's, have a look at

sjogrensadvocate.com/.

I f you do think your psoriatic arthritis started with your flu jab, it might be worth looking at how well your liver is working and how you are dealing with toxins. I ended up having to look functionally and genetically but have slow COMT (affects neurotransmitters and oestrogen and closely linked to fibro) which affects MTHFR (also have slight issue there) plus glutathione absent gene. Poor Phase 2 liver function so I needed better methylation and liver/gall bladder support plus have got just about everything chemical and toxic out of house, diet and off skin! Food intolerances also were probably one of my early triggers - needed to be off gluten (all grains) and dairy. Best wishes

[Zara-LouiseD in reply to bookish]

Hi

Yes, I already have issues with my Liver (although not recognising as a ‘real’ problem by the medical community) I have Gilbert’s syndrome which causes me to have multiple chemical sensitivities and also I easily get Oestrogen dominance if I ingest anything with additional hormones in it ... like dairy or soya 😏

I’m also allergic to a number of foods (severe sinus reaction and 5 day migraine) so I can’t eat wheat, tomatoes, oranges or lemons.... but I am totally gluten free as I am affected by Barley too. I don’t eat any of the nightshade foods except potatoes. I use almond milk except in coffee ... someone recommended organic cows milk today, but I’m not sure if that’s going to be much better?

I avoid household chemicals and perfumes etc where I can too.

I’m very concerned right now as I might have to start taking nasties for my a Psoriatic arthritis as I can’t keep it under control with diet any more 😔

[bookish in reply to Zara-LouiseD]

Hi, sorry to hear that. This isn't fun is it! No, no-one has taken any notice of my worsening liver function either. I didn't know Gilbert Syndrome. I know glutathione absence is strongly linked to chemical sensitivity, but other liver pathways need to be working well too. My phase 1 is ok but not phase 2, and of course that and COMT and MTHFR all affect oestrogen, which is hugely involved in autoimmunity. Balance of hormones is hard and seems to be very important, like gut health. The liver/detox support that I use helps gluathione but also oestrogen breakdown.

I stopped all nightshades when I started AIP diet but also tested and react to potato and tomato so have stayed off those. Potato can cross react with corn and I know I have a corn intolerance. Is is worth trying to quit the potatoes or have you already tried and not been any better? If you have a wheat and barley etc issue I wouldn't personally risk dairy as they can cross-react. I've never tried almond milk as I was off nuts for a while, so made my own coconut milk (bought ones all had additives I didn't want) then stopped eating anything I needed milk for so gave that up. The enzyme that we use to break down caffeine is also used for metabolising oestrogen and I have a genetic variant affecting it, so already limited. I also reacted to coffee in testing so stopped that. Better not use up all enzyme capacity on coffee processing if oestrogen needs all the help it can get!

It's a good job there are a lot of yummy vegetables to eat when you think about it!

I really hope you can avoid the nasties, but they do seem to work if you can't get relief any other way.

Best of luck.

[Zara-LouiseD in reply to bookish]

Thanks for that link - very interesting and to think that my rheumatologist told me that Sjogrens isn’t a condition but a collection of symptoms that can occur together 🤔

I will be interested to see what my new rheumatologist thinks when I speak to him next month.

Reading that info made me wonder if I just have Sjogrens rather than PsA? But the drugs are the same so I guess it doesn’t matter that much..... it was really interesting to read about the neuropathy related symptoms as I get parasthesias?, MS type symptoms and what seems to be erythromelalgia (in addition to the Raynauds) so I get blue to white hands/feet with the Ray’s but then other times my hands and/or feet are on fire and burning unbearably.

Anyway I appreciate the info - thank you 🙏🏻

[bookish in reply to Zara-LouiseD]

My pleasure, I hope it helps. It is a good site and the doctor is herself a sufferer who contributes to SmartPatients Sjogren's forum which is where I came across her.

All of these conditions are so interlinked - Sjogren's , fibro, Dysautonomia, SFN etc, etc. I was told that I had fibro and was being investigated for possible antiphospholipid antibody syndrome (APS) but rheums kept saying poss Sjogren's although mostly negative tests (except now I know a good % of people with Sjogren's have positive tests for APS but don't have the clotting incident (yet) like me, so no diagnosis). Latest rheum has pretty much discounted everything and isn't listening, but I went numb so ended up with Neuro who diagnosed Small Fibre. I get Raynauds too and some dysautonomia signs plus burning feet and face, lots of neuro stuff. Erythromelalgia seems very tied to SFN. If you haven't seen Dr Oaklander's film it is well worth watching ( YouTube Small Fibers, Big Pain). (Just looked at some of your old posts and found the 'cure for fibro' article from 4 years ago, which I hadn't seen, so thank you for that. Interesting that it mentions skin and AV shunts, because so does Dr Oaklander......which is because they did the work together! Duh!! Just shows there is research going on, even if the good stuff takes time). Cheers x

[Furry]

Hi I’m in the uk too, I am currently waiting for a lip biopsy, which I had to push for after years of going back and forward between rheumatology and Maxilo facial. I’ve had a positive Schirmers eye test but still can’t get a confirmed diagnosis of Sjogrens until the biopsy results come back. My blood tests always come back negative. About 30% of people with sjogrens have “false” negative blood tests.

I was diagnosed with fibromyalgia about 12 years ago which I’m sure I have. The two very often go hand in hand. My sjogrens symptoms started about 5 years ago.

I really think a lot depends on who you see. Don’t be afraid to ask for a biopsy, unfortunately I don’t think there is a lot of interest in both these illnesses from the medical profession.

Good luck and take care x

[Missspringsummer in reply to Furry]

I did have a lip biopsy very soon after my symptoms started, which was negative. I’m wondering now if it was negative because I had only had symptoms for 3 months and hadn’t had time to see visible damage. Good luck with yours. X

[bookish]

Hi, yes you can be negative for everything and still have Sjogren's. Have a look at sjogrensadvocate.com/. Sjogren's is closely linked to Small Fibre (Poly)Neuropathy, and about 50% of people diagnosed with fibro are believed to actually have SFN. Maybe have a look at Dr Oaklander on YouTube (Small Fiber, Big Pain - Radcliffe). Best wishes