As a newly-diagnosed ‘90% sure its SS’ sufferer, I’ve been left somewhat in the dark by my Rheumatologist. Quite literally, I’ve been left for 6 months to see what other symptoms appear or not. This in itself causes symptoms of stress and fear.
I’ve noticed a persisting dry cough and palpitations and am feeling bone-tired - can anyone recognise these symptoms?
I have an irritating dry cough but it's not caused by Sjogren's which I've had for 30 years. It's caused by Bronchiectasis which I've had for 20 years.
Hi L154C0,
Are you currently receiving any treatment for your symptoms?
The NHS Choices’ website provides information on various types of treatments to help relieve the symptoms associated with Sjögren’s syndrome which I hope will be of help to you: nhs.uk/Conditions/Sjogrens-...
We published a factsheet on ‘LUPUS: The Mouth, Nose and Eyes’ which I hope you will find helpful: lupusuk.org.uk/wp-content/u...
Have you spoken to your rheumatologist about how you are feeling? Your rheumatologist may be able to speak to you over the telephone or schedule a sooner appointment.
The British Sjogren Syndrome Association have a telephone helpline which you may find useful- bssa.uk.net/contact.asp
Palpitations can be caused by stress and anxiety. We published an article on our blog about stress management and relaxation which I hope you find helpful: lupusuk.org.uk/stress-manag...
Thank you for your reply. I am not receiving any treatment yet other than eye drops from the GP. So many of the symptoms listed I suffer from, but have put down to age/weather/life etc. I feel it’s my rheumatologist’s job to decide what is a symptom and treat accordingly. But I’m currently left for 6 months to ‘see what happens’ which is scary.
I will contact BSSA - they seem to have helped so many people on here.
I have had an irritating dry cough coming and going for years. I have Sjögren’s and am told it’s part and parcel. Lately however it has been more productive due to viscose saliva- like goo.
I know how you feel about being left waiting. I’ve been left waiting on and off since 2011 and more so since having a definitive diagnosis of Sjögren’s I’m afraid.
I’m becoming strangely reconciled to this now because at least it means I have nothing to lose from asking questions and doing my own research. I think we can drive ourselves nuts speculating and charting our symptoms obsessively - at least I have and still do to an extent. It’s part of the medical PTSD so many of us acquire I’m afraid - particularly if we feel that our doctors don’t believe us or if our bloods don’t support us - or both.
But hang in there you will find six months isn’t actually that long - and if you do have Sjögren’s there’s not a lot, other than trying Hydroxichloraquine, that most rheumies will do for it anyway.
A persistent dry cough should be investigated. Have others around you noticed how much your coughing or just yourself? X
Both. But there’s so many things it could be and this Syndrome makes me feel like a hypochondriac - always checking symptoms. Everything I read says early detection and management is best in terms of possible future complications.
They do say those that suffer from a chronic illness are more in tune with their bodies. So your 100% not a hypochondriac, your just well tuned in.
The list of symptoms are pretty endless.
I highly recommend though that the dry cough is investigated. When you read that early detection blah blah blah and you plod along to your gp who really don’t seem interested you spiral into not bothering your gp at all.
A dry cough can be harmless but in your situation it may be your bodies way of telling you something maybe going on that you can’t see.
It could be something as simple as the dry air that comes along when the weather heats up. X
I so relate. My neurologist had another go at FND/ functional overlay yesterday and offered me CBT and the neuro psych root. It was tempting to ask her if this would help with my white coat PTSD from a seriously long history of misdiagnoses I’ve experienced at the hands of medical professionals who have refused to listen or believe me.
But then I decided she was genuinely well intentioned. On her part I think she decided that I’m in denial but who cares. I’m just naturally wary about anyone or anything I don’t trust. I told her that lots of people I know have medical PTSD and she seemed aware of this?!
In the end I said I reserve all my very limited energies for walking the dogs, family and my work as an artist and I really do not want to sacrifice any more on CBT etc. She seemed okay with this.
I see my CTD dr or my rheum (only seen her twice) for review next week and feel similarly. I don’t really know what to suggest other than we both somehow transcend our anxieties about being viewed as hypochondriacs and look them in the eye and explain the impact on our lives. I mean how would they feel if they had lost or suffered so much altered sensation that they had to stop being rheumies or GPs and instead face a world of total uncertainty about where their symptoms would lead - as you have?
I have found that meeting their gaze and describing the impact this has had and what you now realistically hope for (that they go above and beyond normal blood tests for example) can sometimes galvanise them.
I’m embarrassed too re how often I see my GPs. I was offered a sooner slot to see my very popular, favourite GP for a monthly update but I made myself wait an extra week so it’s 6 weeks not 5 🤷🏼♀️😇. How sad that even this made me feel more tough. I’m trying to taper off all non lifeline meds and - over time .. all doctors
LC15... a lingering dry cough should always be investigated I agree.
I hope this comes out okay Mum2 because I’m not wanting to belittle your very valid bitterness or disappointment over years of study and training - given the end result to date.
But I’m a pragmatic person by nature and tend to feel that no training or knowledge is ever really wasted in the end. There will always be some way to make use of it - even if it has it be in a volunteering/ advisory capacity initially.
If you get a diagnosis and treatment this would be much easier of course. But many specialist nurses and even midwives seem to have become indispensable to the autoimmune charities in some way. I think you mentioned that you are very numerate and are considering doing accountancy or payroll/ statistics training perhaps? These skills would never go to waste in the context of charities or health organisation either?
I know it’s very hard - my own journey and career hopes have altered out of all recognition now - but not necessarily in an altogether bad way. It’s good to harness some bitterness about what might have been with your doctors - but not too much. Hard balance to strike with doctors I know only too well. 🤞🏽😊
Hydroxychloroquine will help with the fatigue. It is very slow to act so wait six weeks at least. I have the Sjogrens Cough - I go to a Medicinal Herbalist who has quelled it with daily doses of a mixture including Turmeric. Try sucking sugar free menthol sweets or Jakemans menthol sweets the best ones are the black ones! I was left like you, as were most of the women in my support group. Go onto BSSA.uk.org website - charity for Sjogren’s sufferers. Join up and also give them a call, they are brilliant and fellow sufferers. Apart from joining this great website, is the best thing I did. They will point you to a Support Group in your area - it is amazingly helpful to talk face to face with others in same boat, and you stop feeling alone. Good luck
ps Broncho Stop is a good herbal cough medicine
I was diagnosed with sjogrens following a biospy a few years ago after complaining to a nurse in rheumatology about a sticky mouth and no sense of taste. She organised a referral to the dental clinic where the biopsy was done. Came back positive for sjogrens.
My voice gets very hoarse, the dental consultant told me lots of patients with sjogrens complain about the same thing. I'm also diagnosed with SLE but before diagnosis I had a consistent dry cough for a long time. I remember an aunty telling me I needed to see my gp about it as there was something wrong.
Since treatment the coughs eased a lot and my sense of taste has come back. I use sugar free gum, mints, strepsils, have a spray, xylimelts...I've tried all sorts but those are the main things I use to manage it and lots of fluids. Lupus seems to be well under control, its sjogrens that makes me feel very unwell some days, very tired no energy.
Hope you get a diagnosis and some help soon xxx
I am genuinely sorry you are feeling so unsupported.
Yes to symptoms of “bone tired” and “palpitations” and also several other symptoms in various systems.
For years I have been referred to various specialists (with no one linking these symptoms together), dealing with musculoskeletal pain/ rheumatology, brain/migraine, digestive system and bowel issues, neurological pain, urinary tract — overactive bladder and idiopathic haematuria, skin, mouth/dental issues (despite really good oral self-care), thyroid function issues, et cetera. For me I now know it’s all connected under the Sjogren’s diagnosis.
I recommend Sjogren’s Syndrome Foundation (USA) for understanding the disorder. Best overview of extent of known associated symptoms:
sjogrens.org/home/about-sjo...
——Not as complete in citing all the areas where a person with Sjogren’s can have systemic issues, but also good are:
nhs.uk/conditions/sjogrens-...
[NB: NHS site mentions extreme tiredness and cough.]
And
Mayo Clinic (World renowned) -
mayoclinic.org/diseases-con...
And
John’s Hopkin’s Sjogren’s Center (World renowned) -
hopkinssjogrens.org/disease...
NB: they have an especially detailed page re various neuropathies.
Just as I’ve written this, I’ve decided to take the diagram from the Sjogren’s Syndrome Foundation website (link above) printed out to my rheumatologist with several copies to pass around to his team. I feel like the team very minimally understands Sjogren’s. I will try to present it very respectfully but I think that more complete picture has not been something which they have been able to help me pull together.
This is long but I hoped my experience is benefitting someone! Is that helpful?
H2
UCTD and Chronic Dry Irritated Eyes
Plaquenil and dry mouth
Night thirst and dry mouth
Dry skin & sun cream 
