HOW MANY SYMPTOMS DO I NEED FOR DIAGNOSIS??

[Bee1011]

Hi all, I am yet to be diagnosed but feel totally confused and upset with the length of time it is taking and how slow the consultant is in dealing with me.

I had been feeling poorly for about 6 months, exhausted but had difficulty sleeping, flu like symptoms but kept dragging myself to work and trying to carry on with normal life, I am also a single mum to one teenage daughter.

I started with raynauds 5 years ago, then high bp, then severe dry eye and extensive bilateral dedication staining to lower cornea, I have been prescribed Hylo Forte for this, my limbs and feet ache and my joints are so painful especially my left knee that it is sometimes difficult to climb the stairs. My mouth cracks at the sides and is constantly dry I sip water constantly.

In August I went to my gp as I thought maybe my iron was low or Vit D but instead gp made me an urgent appt to see a rheumatologist as ANA was extremely high, anti centremere antibody.

Rheumatologist sent me for tests on all organs, I already suffer from Gerd and take Lanzoprazole I have hiatus hernia which was confirmed by tests, I have ibs and barium meal showed evidence of slight impaired mobility.

I recently went back to see the rheumatologist who said he can’t diagnose yet as not enough symptoms but thinks Sjögrens and Crest overlap.

How can there not be enough symptoms plus positive ANA which is really high !!

I’ve been in sick since September and I feel work don’t believe how poorly I feel.

The crippling fatigue is the worst if I do too much I suffer for days.

Rheumy has taken more blood and wants to do a test on my heart as something cane back borderline and see me in 4 months that doesn’t help with work ! The stress of all this just makes my symptoms worse.

Sorry for the long post I just feel so upset and frustrated. My parents are great and really supportive but I feel others just think I’m faking and really not that bad.

Any advice on your journeys to diagnosis would be greatly appreciated x

[Megansheart]

So sorry Bee1011 to hear how bad you are feeling. These autoimmune conditions are certainly 'invisible illnesses'. So to those around us there is nothing they can see except for someone who is fatigued and only wants to do the bare minimum to get through each day. Consequently, people like to label you as depressed!

Unfortunately elevated ANA's are not enough to help give a specific diagnosis of Sjögren's but rather indicate an autoimmune condition, not which one. Fortunately it looks like you have a good rheumatologist who 'believes' you are ill.

I'm sorry to tell you this but it can take years before one becomes seropositive for Sjögren's antibodies. However a good rheumatologist will often go by symptoms, dry eye, dry mouth (cracks at the side of mouth being a classic sign), and many other manifestations like joint and muscle pain, impaired gastric motility etc.

I got ill in 2007 and finally tests in 2015 revealed my raised ANA's and Anti Ro's etc.....so eight years for me. Largely in that time my individual symptoms were well diagnosed and treated which made life tolerable....just. For example, things such as muscle pain I started Tramadol. Neuropathic pain - Lyrica. Gastroparesis - Motilium etc etc. The label of Sjögren's has enabled me to access more SS specific treatment like Hydroxychloraquine (Plaquenil) and for people to believe me. Also ongoing monitoring by a rheumatologist who doesn't just say I have 'Fibromyalgia'.

[Bee1011 in reply to Megansheart]

Hi Megansheart

Thanks for your reply and for sharing you story. 8 years ! oh dear that is a long time.

I think maybe I need to visit my gp to discuss pain relief ie tramadol as my gp is really supportive. She doesn’t understand auto immune disorders and even asked me to keep her updated as she’s really interested in the outcome, she has also seen how poorly I look and feel so I’m sure she’ll do what she can to help.

Work is my biggest worry, I just can’t cope with if at the moment it’s so demanding and I’m so exhausted and in pain. I’ve been off for 3 months now luckily I get 6 months on full pay otherwise I don’t know what I would have done ! I suppose that’s why I was hoping for a quick diagnosis as I want them to believe and understand what I’m going through.

Thanks so much for your support I do appreciate it because at the moment I just feel so alone, upset and frustrated as some days I can’t do anything and I’ve previously been a really active busy person.

**Twitchtoes - hello

I had an email saying you had replied to my post but can’t see it anywhere so please excuse me for not replying.

Please tell me where I can find it as I would be interested to read it.

Best wishes

Jo

[Megansheart in reply to Megansheart]

Hi Bee I can see according to your emails that you have replied to my response however I can't see your message coming up in the posts!! How strange! I'll keep looking.

[Hidden]

I have had a very long journey to diagnosis - but only 6 years under Rheumatology. Initially I was misdiagnosed with RA due to bilateral joint pain and stiffness. I was diagnosed as Hypothyroid about 15 years ago and believe my autoimmunity started from when I was a toddler - due to various things.

I was finally diagnosed with seronegative primary Sjögren’s due to high ANA and very positive lip biopsy last year. I am on an immunesuppresant drug called Mycophenolate now having tried all the others but failed to tolerate any.

Of course they tell us online and in talks I’ve attended, that Sjögren’s usually emerges in women of a certain age. But in my case I had alopecia and very severe eczema, terrible teeth, blepharitis, conjunctivitis and allergies from age of 9 onwards. And it’s my suspicion that many more younger people, including men, have Sjögren’s without realising because each time they go to the doctor their symptoms are viewed and treated in isolation.

I met a woman yesterday who must have been in her 50s and was, just by chance, telling me about being in hospital with kidney failure a few years ago - then said how the lighting makes her ill and she had a visible rash climbing up her neck. She gets violently sick sometimes. This woman has a very high powered full time job but to me Lupus was written all over her. I tentatively asked her if she had Lupus and she said no one had ever mentioned it to her.

She asked what the symptoms are so I described the classic ones and she said she has suffered all of these for years. She came up later and thanked me as she had told her colleague and they both felt it was a very good fit.

So it’s not just that some people have these diseases more mildly than others - but also that some soldier through where others like me, with similar symptoms, just can’t. Also a lot of this is about having a really good doctor, or else just a chance encounter with someone who is able to join up the dots for us.

[Megansheart in reply to Hidden]

Looks like all the messages are up now. Obviously a glitch somewhere.

Bee, Twitchytoes reminds me that you could always have a lip biopsy done, which is more specific for SS. Some people really dislike the outcomes though as they get quite a numb/painful area on their lip which can last quite awhile. However research it and see if it is for you.

What does your ophthalmologist say regarding the state of your eyes, such as the Schirmers test? Often this test can be a big indicator of SS.

[Bee1011 in reply to Megansheart]

Sorry it took me a while to reply my daughter hasn’t been well and any stress makes my symptoms worse too.

I am being referred to the eye hospital regarding the state of my eyes and what is a Schirmers test ? I’ve never heard of it. I’ve just received an appointment for a scan on my chest as apparently a blowing test showed some problem with my breathing. My rheumatologist has been really nice and sent me a letter to give to work advising I have an undifferentiated connective tissue disease and am currently undergoing tests and scans. He said it’s most likely to be chronic, I suffer fatigue, pain, dry eyes and mouth and raynauds, he put the fatigue is particularly troublesome and affects my everyday activities.

This letter came after my post and has made me feel a lot better. The main reason why I get upset is because work are always on my back about when I’m coming back, I don’t even know at this point if I can.

Thank you for all you advice and support though it all helps in this difficult journey.

[Bee1011 in reply to Hidden]

Hi Twitchytoes

As I said to Megansheart I think I was getting upset about not getting a diagnosis because of work and other people saying what’s exactly wrong with you ? I just wanted to put a name to it so everyone gets off my back. I’ve read so many other posts about people thinking your faking it or not feeling as bad as you do because you can’t tell them what your diagnosed with. Why should I care what they think but you do ! With work I suppose it’s their job to try and get you back to your normal duties but it feels like an awful lot of pressure.

Thanks for sharing with me your journey and symptoms it’s been good to talk about it.

[Hidden in reply to Bee1011]

I get where you’re coming from - but I’m afraid you may have a long way to go still in terms of getting sympathy and awareness whether you have Sjögren’s or UCTD - if my experience is anything to go by.

Only yesterday my 25 year old mocked me as a hypochondriac when I said I struggle with spicy food these days!

In the work place many seem to say “oh I have dry eyes/ mouth too.,” or “oh yeah we all get aches and pains as we age..” and most people assume, when I say Sjögren’s, that I actually have Fibromyalgia or ME. Which I’m sure are awful conditions but are relatively common and don’t require sufferers to take steroids or the maximum dose of an immunesuppressant for! Sjögren’s and UCTD are still way beyond most people’s ken I’m afraid.

[Bee1011]

Oh no that’s awful your own calling you a hypochondriac...there’s no hope for us !!!

I know I’m in the very early stages of my journey and I’m going to try and take it one step at a time and ignore all those who obviously think I just want some time off work, I’m happy to cut them out of my life I don’t need them to be honest.

My relationship of 2 years has just ended as I don’t think he could cope with the changes in me, the fatigue, pain etc, but hey ho it’s a sort of relief really not to have to keep him happy !

On the other hand my mum and dad are so supportive and are there for me every step of the way. They really are fantastic reading up on auto immune disorders, they believe and understand me and are there to help if I’m in pain or having a really bad day.

I’m waiting for the results of further bloods taken be my rheumy a couple of weeks ago, a chest scan as breathing problems which is on the 4th Jan and appointment at eye hospital, I’ll just go with it. As for work I had a chat with Occupational Health doctor last week and he was really good. He said there is absolutely no way I can do a phased return back to work as I would at this point be back to being as poorly as I was with the fatigue and pain when I went off in September. Instead maybe go in for 3 hours here and there to see how it feels, no increase or set hours just what I feel I can do. Whether work will agree to this is another matter but we’ll see.

To be honest I feel better than I have done in a long time because I can sleep when I need to and I’m learning to pace myself. I’m changing as a person as I used to rush around so much now I take my time over everything even cooking a meal or vacuuming the house, I don’t vacuum the house anymore I vacuum a room then maybe another room a different day if I feel ok.....I am changing so much it’s weird but I recognise it’s what I need to do.

Thanks again for your support and for reading my lengthy posts 😀