On A Sjogrens Awareness Mission

Well, I've been managing very nicely for a number of weeks now. (At times, I even thought, oh, I'm ok now, over whatever attacked my well-being)!

Of course, just as I was beginning to feel ok'ish', so I am reminded, there is no cure for Sjogrens.

So, I'm back in bed, having returned from a GP appointment, armed with antibiotics, pain relief meds, and eye lotion.

Symptoms came on suddenly yesterday. I drove through lovely countryside, beautiful sights! Windows down on car, feeling good!

Then, I became overwhelmed with a potent smell. Beautiful, as the smell was, perfumed? Rapeseed? Who knows? But, I put that car window up pronto! Damage done!

Within an hour, or two, my throat, and nose, scalded. Reluctant to take antihistamine, (due to drying, side-effect, I took honey and lemon).

This morning, full blown throat pain, burning nasal cavity, sinus and head pain. Chest feeling tight. Trip to GP. (Learned last 2 episodes, get problem sorted, as took a month each time before similar symptoms, due to my trying to do without antibiotics).

There, due to a couple of previous appointments, whereby I had negative experiences with medics, who believe sjogrens symptoms are psychological. And, my growing knowledge, and confidence (through support on this site and specialist care medics), I was not only able to thank the GP (I had never met her before), for her great service. I felt confident to ask how much she knew about sjogrens.

When GP responded that she had knowledge from gynae perspective, (you all know, ladies!), I was very happy to provide her with a leaflet with a great summary of how sjogrens can/does affect, each body system, and impacts on patients overall well-being.

GP thanked me. Then told me that she trains GPs'. It will come in very useful.

Wow! Couldn't have given the leaflet to a better placed health practitioner!

If anyone wants leaflets, to help raise awareness of the reality of living with sjogrens. Google BSSA, (British Sjogrens Syndrome Association), they also have a helpline and, arrange face to face, support groups. BSSA also send members a quarterly magazine full of great information. It has been a great organization for me. I have made friends and we each know we can phone each other any time. Isolation and misunderstanding has been overcome since I joined up!

Together, we can, and will, improve our experience, with health service practitioners! In addition, we are helping them gain knowledge, they otherwise, do not have.

36 Replies

  • Great post ! I hope you are feeling better now . Did the doctor suggest an alternative to antihistamines ?

  • Thank you weathervane.

    Interesting name that. Do you suffer through changes in the weather? I do.

    No, I don't discuss ?allergies anymore because I saw an allergist recently and he concluded, I do not have allergies, its psychological.

    I was so annoyed, first time I felt need to complain, via telephone, to PALS at that hospital. I have since received a letter apologising for his attitude. Furthermore, he admitted he has no knowledge of sjogrens. There is a leaflet and further info about sjogrens in the post for him!

    As I don't have the energy to complain, I now choose to hand out leaflets etc, hoping that passing on information to medics, will lessen the likelihood, of sjogrens patients being treated badly, through their ignorance, lack of training, and/or their bigoted attitudes.

    I had waited 11 months for the allergist appointment. During that time, I learned a lot about sjogrens. My belief is that smells cause allergy like symptoms. My nose and throat burns and becomes itchy, as do my eyes. I now believe, the lack of moisture, along with very strong smells, sometimes causes dryness to exacerbate, making me feel very uncomfortable.

    I tried to discuss this theory with allergist, who immediately dismissed there is any physical cause, putting my symptoms down to psychological.

    The letter of apology did say that really all he had to say, was no I do not have allergies, In his opinion. As for sjogrens, he doesn't understand it, so was not qualified to dismiss my view.

  • I agree with you , it was years before i was diagnosed. I thought it was all in my head , it was such a relief to find out the cause. We should not have to fight to get the appropriate help and to be told you are a hypochondriac 😡 That is the last straw ! My gps are not bad though there are locums who have not a clue , my rheumy is good if i can get to see her ! I don't know the cause of your problems but a second opinion with allergist should be offered . My son has found locally sourced honey is good for his hay fever IF that is the cause. Good luck with all xxx

  • Thank you.

    I do use honey and lemon, for sinus throat infections. I could try just honey for ?allergy.

    I feel safer within the sjogrens specialist team in London. So, I will talk to them about ?allergy or ?sjogrens symptoms.

    Take care, xxx

  • Take a desert spoon of locally sourced honey every day , its worth trying. You are lucky to have sjogrens specialist team it must make a big difference xxx

  • I will try that, thank you.

    Yes, finding that team has been an enormous help.

    They support me and help me understand what I'm dealing with.

    With them at the helm, I feel safer and less isolated.

  • I think it's great that you are raising awareness for Sjögren's in this way. I must say that during the five years when I was misdiagnosed with RA I found it a far easier disease to raise awareness for.

    Now if I ever mention the name Sjögren's to my GPs they look at me a bit oddly and the only reference they make is to my "connective tissue disease". I've wondered whether they maybe don't know how to pronounce it or just don't think it could possibly encompass all my symptoms and signs on it's own. I just have to hope that each time I mention it that it gradually opens their eyes to the idea that it's not just some relatively benign secondary disease to all the others.

    Perhaps we need to think of a powerful symbol as with Lupus and the wolf and butterfly?

    Meanwhile keep on handing out those leaflets and fighting the good fight! X

  • I heartily agree...I have been treated by my rheumatologist for Lupus for nearly two years, but I have noticed that he is getting somewhat patronising with my last two visits, and suggesting that alot of my symptoms maybe due to depression....my main symptom is tiredness and a feeling of lacking muscular strength to the point of being unable to walk more than a few yards at a time....I also have sever spinal arthritis. Also the lupus had attacked my liver and I ended up with auo immune hepatitis.

    Now I suspect I have Sjogrens, as I have the symptoms of dry mouth, eyes, and even nose.....but I don't know whether to say anything to him or not. I feel let down by my Rheumy, I was going to tell him of the dryness ect but due to his barely concealed impatience, i didn't....I get the feeling that with the treatment he thinks I should be feeling much better.

  • Hi allergies are organic and are tested by a nurse usually doing the pin prick test on your arm. You can desensitise to some allergies but they are never psychological

  • If you can afford it, there are companies out there that test blood samples instead of subjecting you to the pin prick tests. I personally think those tests are faulty. My husband and I both have major allergies (reactions and numbers of items - everything from potatoes and wheat to Tylenol and antihistamine), but we react totally differently. We had our tests done by the AlCat organization and it was really helpful for telling us what each of us are allergic to, and it was not always what we thought...

    As for the Sjogrens, there is a blood test for that as well. If you have an ENT doc, that might be another good place to start. Just call in advance to see if they know / understand the allergies and Sjogrens.. My ophthalmologist was another excellent resource as he has a lot of patients with SS and understands it really well.

    Don't give up Webar4780, there are docs out there that do know about both and can help you. Best luck and gentle hugs

  • Thank you CaerylUSA,

    That is a good idea.

    Currently, I am home taking yet another course of antibiotics, and pain relief meds. I was very fortunate seeing a new (to me), Dr at the surgery, who was warm and non judgmental. She examined my throat and glands after listening to my symptoms and prescribed for me to take for 7 days.

    I have completed 3 days of the 7 and in some ways I feel better, aching less, headache not as bad. However, the nasal burning, red eyes, and scalding red throat persist, perhaps worse.

    I feel that my sinus problem may be lessening as forehead and facial pain is less. BUT, I cannot help feel that today I have allergy type symptoms big time!

    I hung out some washing, I could smell fresh cut lawn from neighbours garden. Later, collecting washing in, I was overcome with high smells of ?trees ?flowers. I was relieved to get back indoors.

    So, my dilemma is, do I have sjogrens and allergies. My GP after the 2 years ill health will not refer me to ENT.

    Just tonight, I have been googling how I could pay private for ENT. Having been dismissed via allergist, I think that's a better option. Though, I will now look at your idea.

    I need to sort everything out. I love the summer and staying indoors is very unpleasant.

  • I can relate to these sensory symptoms very well. As Amallia says you can't imagine allergies. I can compare this a bit to the pain in my fingertips which appears to be due to Pompholyx eczema - as can see and feel lots of tiny blisters that seem to be cyclical. Pompholyx is an allergic skin condition rather than autoimmune and I've had it coming and going all my life but never in my fingertips and under my nails? However I also have Raynauds and my GPs and rheum think this fingertip pain and blisters must be vascular hence the viagra?!🙄😅

    I think for many with Sjogren's these problems are both allergic and immune mediated. They just don't know enough about this relationship yet but Mast Cell Activation Syndrome is slowly being better diagnosed and understood and I'm guessing this may be where autoimmunity and allergies intersect.

    I've been referred to ENT 4 times now by GP but keep being bounced back. Just over a sinus infection followed by throat infection followed by ear infection so not sure at what point they say that antibiotics aren't really doing much for us? But then most ENTs are like allergists and know B all about Sjögren's I'm told. X

  • I understand. I react to some of that too. Best luck with whichever course you take

  • Twitchytoes,

    I think that's a great idea! A symbol of recognition for Sjogrens.

    As I am a member of BSSA, I do have a blue ribbon, I wear it to meetings. I once wore it out and about but no one asked me what it was for.

    BSSA also provide pens to raise awareness, on occassion, I have handed pens out and struck up conversation about sjogrens. I am dismayed to say, as you have also found, most of what is discussed is how to spell, and what a strange spelling... by the time I try to talk about sjogrens symptoms, the glazed eye, oh, but you look well response ensues!

    Thus, I have opted for leaflets to hand out. I hope some people will read them and learn about sjogrens.

    I will now ponder upon your idea and try to think of a symbol that could be useful. X

  • I'm working on it too but only get as far as drought and creatures that survive in deserts. I did do some felt tip drawings about this - had a cactus growing out of my head in one!

    I'm a member of BSSA too. Went to one local group meeting but the guest speaker was from Arthritis Care and couldn't pronounce Sjögren's and both her quiz and talk focussed RA?! Good heavens I was an ambassador for NRAS for 3 years and I didn't drive for hours to do a questionnaire about RA statistics?! Depressing? I think the problem is that it's viewed as a disease that mostly affects women of a certain age. I'm sure it's affected me since I was a kid actually - hence 100% positive lip biopsy result but there we go! 🙄X

  • A few ideas - a desert fox, a tree surviving in a desert/ drought, a cactus? I have a blue BSSA ribbon too somewhere but don't really like wearing blue?

  • Amallia,

    You are very kind.

    And, definitely better informed than the allergist I was unfortunate to see.

    Thank you for responding so positively.

  • Your mission is great I am waiting diagnosis just had good episode & thought maybe I don't have anything but the suns out & im covered in a rash seem to be allergic to sun, eyes can't get enough moisture I'm parched and exhausted all at the same time. Maybe I need to get some more info as reading these posts it all sounds familiar. Also I'm asthmatic & that's suddenly worsened gone from no treatment to needing it daily. Could it all be connected?

    Thanks for your post I found it helpful x

  • Twitchytoes,

    That image of cactus on the head made me laugh!

    You have much more experience than I do, in negotiating an easier route with medical professionals. As I was only diagnosed approximately a year ago, I still find the whole sjogrens patient role sooo frustrating! Explaining over and over again, sometimes being dismissed or thought to be a hypochondriac..

    I was told I suffered with sjogrens, had been for 10 yrs but never told!, and given an Arthritis Care document on Sjogrens.

    I took the leaflet home. It had a picture on the front, showing an attractive lady, looking into a mirror, and inserting eye drops. So, I thought, ok, I've never heard of sjogrens, but that lady doesn't look ill, she looks as though she was putting finishing touches to eyes, before getting out and about. Thus, I thought, oh, that's fine. I can cope with sjogrens. It's just part of my, as long as I can remember, living with osteoarthritis.

    Ah, a picture does not tell a million stories!!!

    The first flare up I had was very frightening. I do not need to go into detail. You know. The list of symptoms is lengthy. The fatigue is beyond words. I hoped I could go into a shop after my husband drove us to a store. I was wrong. That fatigue left me wondering if and how I would get back in the car, as I stood outside of the car, I felt almost every single ounce of energy drain from my system. Home we went. The symptoms followed rapidly. I did not leave the house for two weeks. And, only then, t o visit GP, who prescribed antibiotics and more.

    On reflection, I too, see that I have lived with sjogren symptoms since and during childhood. Sadly, I see that my dear Mom, who was never diagnosed, suffered the same symptoms too. On that note, I feel fortunate that at least I know what I am trying to deal with.

    Today, I think antibiotics are beginning to kick in. My husband has brought us to Wales, we have a static caravan here. Within the hour, I had the tell tale symptoms like hay fever again. I decided to add antihistamine to my daily meds today. At last, I feel a little relief with the nasal, throat eye, ears and sinus symptoms that are also associated with sjogrens. No point me letting allergist know though, he wouldn't believe me!

    Oh, I'm beginning to quickly turn the other cheek with some medics!

  • Well we all live and learn eh re medics and how to deal with them.

    I'm a lay representative of the public for a Scottish healthcare improvement organisation and previously an ambassador for RA (NRAS). But I still find it very difficult to speak about Sjögren's to my team of fellow volunteers or even my GPs.

    At least people often knew what RA was and sometimes have heard of Lupus - but very few have heard of Sjögren's. Even sufferers of secondary Sjögren's often think it's just dry eyes and mouth avd spell it Sjorgens etc!

    Show Grins for Sjögren's! - well thanks RA Warrior and all the other health info sites. Given what often happens to our teeth, no thanks! X

  • Well said!

    Slowly, but surely, word is getting out! We each do our part in raising awareness and fighting the good fight, despite setbacks, from some uninterested medics.

    I do come across a few people spelling it as Show Grins, and it makes me feel very sorry that sjogrens is pronounced show grins. I have met a number of people, at meetings, who have so many dental health issues, through sjogrens, they tell me they do not feel comfortable smiling, (until cosmetic dentistry has been done), let alone grin.

    Like you, I'm not a fan of the colour blue either. Once again, I think, why a blue ribbon? I don't want to be 'blue'. My good days are worth celebrating, I think yellow would be better!

    Same with the tears logo, Flare up days, I feel like crying, but can't shed a tear! I don't need a visual reminder.

    I want sjogrens to be understood as the symptoms that underpin it. Then treated. And, then patients lives respected, for doing their best, managing daily living, with the condition.

    Maybe a sjogrens awareness soap box would be a great logo? Lol.

    Thanks for cheering me up by getting my imagination going again, Twitchytoes, I have 2 more days antibiotics treatment. I hope I will start to feel the good days feeling soon. You know what I'm going through, right now.

    Thanks for sharing and caring. X

  • Yep just got off those antibiotics for the second time in a month - made my tummy even more sore. Mind you I'm on Mycophenolate, Losartan, Levothyroxine, Ranitidine and now, Sildenafil (Viagra) - so there is no single symbol that would sum up my version of Sjögren's adequately - it can present in so many ways. For me it would probably be a thorny dragon/devil to sum up my incredibly painful small fibre neuropathy and Raynauds best - but for others something relating directly to dryness - a cracked mud plain/ desert would be more apt. Mind you I can meet most signs representing Sjögren's full on but not the tears of the Sjögren's logo I agree!

    My first GP used to pronounce it with the Swedish umlaut so he taught me well! X

  • Here's what I'm waffling on about - rawarrior.com/what-is-sjogr...

    I don't know why but I find this Sjögren's blog of hers kind of annoying. Partly because of the Show Grins and partly because my Sjögren's mimicked RA for the first two years - and I'd actually rather have the RA pain symptoms than the dreadful burning small fibre neuropathy everywhere - that causes my tiny nerve fibres to die off on their droves and turns me slowly numb. 😏X

  • Thank you for link. I tend to agree with your view.

    One more day antibiotics and still hoping I soon get over this flare-up.

    I tried hydroxychloriquine for 4 months, during which time I had 2 flare-ups. Including first times experiencing sinusitis, ear and throat infections. Neutrophils and sodium levels down... Now on 3rd such flare-up in 7 months. I think it is time I accepted that I need meds. So, thank you for sharing, knowing that other sjogrens sufferers benefit from meds, is what I need to hear.

    I think I have a bit of denial going on, I probably think I will go into long time remission. But, as you know, its exhausting dealing with flare-ups.

    The burning feet and subsequent numbness has been part of my journey. I was sent for Neuropathy tests and delighted as clear. Though, now I am being seen by a sjogrens specialist team, I am told with sjogrens, those tests are not reliable.

    What a journey!

  • Yes it's true the usual nerve conduction studies are unreliable for small fibre neuropathy. I'm always posting this link but just in case you haven't seen it yet X ; hopkinssjogrens.org/disease...

  • Very interesting link , also a bit frightening.

  • Well I suppose my neuro symptoms have dominated my life for the past five years so for me this link helped make my symptoms seem a bit less scary. I mean by this that I was scared that I had MS as well as RA but when I read this I became certain that I actually had Sjogren's instead of RA. I think it's also good to show this link to people who think Sjogren's is always just a relatively benign disease affecting mostly the eyes, mouth and sometimes the joints. But for me the widespread small fibre neuropathy is the most awful type of pain I know of. X

  • Its difficult to get people to understand this as you can look well and have no outward sign of an illness . The video you shared a number of months ago , ( was it Swedish ? )was also very informative.

  • Gosh I can't recall sharing a video?! Are you sure it was me? X

  • Im nearly sure it was you 🤔 When i said a number of months ago it was probably over a year ago! Maybe it was italian ?? It was about a month and son .

  • Oh yes that was me you're right! And yes it was Italian and maybe about 8 or 9 months ago - shortly after I'd been diagnosed myself (or rediagnosed) x

  • Ive tried looking for it but can't find it , I remember being quite emotional after watching it 😢

  • I'll try and find it - I think I posted it on my FB page too - not that anyone commented or liked it🙄😘

  • Well I found it but the link was defunct😕? X

  • Thank you, Twitchytoes,

    The Hopkins link was v v interesting 4 me because I have many of the symptoms.

    Indeed, when I collapsed, a couple of years ago, the GP, then paramedics, thought I had had a stroke. I think what I have just read, explains so much of that very frightening, first time episode, for me.

    I am going to get my hubby to print a copy. I am learning, so fast, that we have to help many doctors understand how sjogrens manifests.

    As I write this, I am also remembering that I had a frozen shoulder, had to have mua under anaesthetic, also 3 prolapse discs, twice over, and sciatica. Over and over, I have said to medics, my spine is burning!

    I get numbness in my face. Burning feet and toes, that wake me at night....

    Oh, you know! We all know, how difficult it is to get medics to listen to what they do not understand about, or can't see!

    I feel so blessed to have found you, Twitchytoes.

    You not only brighten my days, with your humorous posts, but you are so knowledgeable about sjogrens!

    Thank you for sharing and caring. X

  • Wow thanks for the confidence boosting comments Webar - really needed at this moment in time! X💃🤸‍♀️🤹‍♀️

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