Hello, new here

[Bluedragon]

Hi all, a quick introduction. I’m a 52 yr old woman who lives in the Midlands. I have B12d and Hashimotos. Self medicating. I am being investigated- on my chasing- for Sjorgrens. I’m negative for the antibodies. The rheumatologist- nice man- tried for ages to do Schirmer test and then kept reading it once removed- of course it kept increasing lol so negative at 12 mm. waiting for appointment for lip biopsy. He thinks I have Primary Sjorgrens

Haven’t cried for about a year, dry mouth (terrible teeth), parotid glands swell, dyspareunia, cough and fatigue- fatigue-fatigue. Had difficulty getting breath on plane this year. Raised CrP, ESR and ferritin always. Oh, overweight, getting bigger....

These are symptoms I’ve untangled from Hashimotos and the B12d.

Came onto this forum to read one of Twinkietoes (sorry if not quite right) posts. Hoping for support. 😊 no Lupus as far as aware of or RA - I get random pains but not bilaterally which RA would be.

Jo

[Hidden]

😊 it’s Twitchytoes - wish they twinkled but they really don’t!! Most with Sjögren’s, but not all, have positive ANA, raised inflammatory markers and often raised IgG as I do. And just for the record - I was misdiagnosed with RA for five years because of bilateral joint pain! Sjögren’s can mimic Lupus and RA pretty well!

Hope you get clarity soon.

[Bluedragon in reply to Hidden]

Ha- I knew I’d got it wrong but didn’t want to lose post by leaving it to check.

[Hidden in reply to Bluedragon]

No worries - I’m delighted to have made an impression at all even if my toes twitch rather than twinkle!!

[Bluedragon in reply to Hidden]

Lol.

It was your long post re appt with Dr Price.

I wanted to mention the herb zanthoxylum alatum to you- great for moving things at the extremities and mucous membranes. B12?

Also have you tried rebounding? Incredibly good for getting everything moving and the lymphatic system, not to mention good for your bones.

I have one in my Amazon basket for when I have some money!

I do qigong which jiggles things to lol and moves energy

[Hidden in reply to Bluedragon]

Hope this doesn’t sound disrespectful but, if you’ve read my Dr P post and others you will know that I’m pretty gemmed up on keeping myself moving on all fronts!

Ive had this conversation on the IBS HU network and avoid thyroid UK HU like the plague now (unless tagged as I was yesterday) following well meant suggestions re IBS-c and neuropathy.

I think herbal supplements would do nothing for me because mine is at least partly the result of autonomic dysfunction - rather than mucosal dryness. So I have found that diets and supplements that work for IBS-c often don’t work or compound existing problems for those with neurogenic bowel. I manage reasonably well just now with a sachet of Laxido and half a cup of liquid Senna and the odd bisacodyl.

Please do stick to helping yourself and don’t fret about trying to help me - I’m very good at coming here and asking if I need advice and support.

And re rebounding - well I foolishly succumbed and spent money I really don’t have on a rebounder following a friend’s recommendation. The problem is that it takes up space in our tiny house and doesn’t feel safe when my feet are numb and my balance totally skewed as a result! Anyway I did read after purchasing it that the merits for older people (I’m 54 going on 80 in terms of my balance and poor health!) are negated by the perils of all the falls they cause. I agree about the merits of jiggling and lymphatic system though so do use it occasionally - but it doesn’t seem to do much other than make me more anxious! I think a good walk in the park with the dogs and my weekly Pilates are much more effective on the whole. 😊

[Bluedragon in reply to Hidden]

No problem.

I make myself a bitters mix up to keep all things moving. I don’t have a gall bladder so I have to be on the ball as it were. 😊

I chose a rebounder with a handle and that folds up for those very same reasons lol. I could visualise falling off it or going through it all too easily!!! And waiting till the family were all out- no one needs to see that!

A knowledgeable herbalist and some stuff in a package I suggest are different entities, dosage and quality for a start, what works on the actions on the body, does it conflict with medication etc etc. 🤓

Have you looked at genetics at all? Curious to see if there are any specific markers.

[Hidden in reply to Bluedragon]

Bluedragon no offence but I haven’t time or energy to respond with advice just now so I’m going to leave it to others hopefully. My day is slipping by and my many historic posts here are easy to access if you are interested in learning more about my form of Sjögren’s, diagnostic journey etc.

At this point in my life I am not considering naturopathy or herbalism or rebounding because I’ve chosen different path.

This may change in future but if so I would require someone with a PhD level of knowledge to advise because my nervous and vascular systems are very involved.

And I don’t even wash or toilet these days without knowing my hubby or someone is around - let alone rebound!?! So I think our autoimmune problems must be very different.

I commented recently on someone here called Sootired’s update question about genetics. If you look her up you’ll find my own take on this as well. 😎🙃🙂

[Chanpreet_Walia LUPUS UK]

Hi Bluedragon,

Welcome to the LUPUS UK HealthUnlocked Community!

According to The Lupus Encyclopedia, Sjögren’s syndrome affects the lacrimal glands, which secretes tears, causing dry eyes, and the salivary glands, which secrete saliva, causing a dry mouth. We published a factsheet on ‘LUPUS: The Mouth, Nose and Eyes’ which you may like to read here: lupusuk.org.uk/wp-content/u...

We published an article on our blog about ‘managing fatigue’ which contains helpful tips and information which you can read here: lupusuk.org.uk/managing-fat...

We published an article on our blog about diet and healthy eating which you can read here: lupusuk.org.uk/diet-and-hea... . Although you have not been diagnosed with lupus, you may like to read our blog article on ‘exercising with lupus’ here: lupusuk.org.uk/lupus-and-ex...

We offer a free information pack which you can download or request here: lupusuk.org.uk/request-info...

[Bluedragon in reply to Chanpreet_Walia]

Thank you Chanpreet, some very helpful leaflets and links there.