I would pose this question on the Sjogren’s forums but have not had much luck getting replies there and know many of you will have had this procedure done as part of your AI journeys, so hope you don’t mind if I pose it here. That’s a Louis Theroux documentary we need to see: AI journeys.
My ENT doc said that recovery from this procedure would be swift, and pain negligible, but 3 days on am finding it still painful and my lower lip has suddenly become very dry and I was up a lot last night drinking / in pain.
How did you all find your recovery arc, please?
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Sorry to say my lip biopsy was virtually pain free :
Mind you, thinking back, I was in a lot of pain and my result negetive, though the surgeon said she had never seen anything like the inside of my mouth :
I'm with Graves post RAI thyroid ablation and believe my issues all related to the long term consequences of having had this treatment though found no NHS department confirm or deny my research.
Thank you. What do you mean about the inside of your mouth? How did / does it look?
And how are you medicated / treated for your mouth symptoms, if they weren’t connected to Sjögren’s?
Am glad yours was pain-free and result negative. I’ve had such bad luck with my reactions to medical procedures in the last year and the number I’ve had to have that the next time a doctor tells me a procedure is easy / pain free I just won’t believe them.
Well - I was in ever increasing circle of unwellness and my doctor said i was fine ;
My eyes were watering all the time, I was very sensitive to the sun, and with blinding headaches was basically living with blackout blinds fully down.
My dentist at 6 monthly check ups suggested I should get checked out for Sjogrens as my saliva had dried up, as had the mucous in all my head/neck orifices.
I don't know really what the inside of my mouth looked - it felt it like it was full of concrete and so painful - sleep was the only respite I found from the pain.
I couldn't eat properly and was eating direct out of the tin from the fridge , rice pudding and soups.
So anyway, after bloods were negetive, I was eventually seen by rheumatology. and then waited another 6 months for the lip biopsy.
By this time, and being basically housebound I started my research and read of the long term consequences of RAI treatment and it seemed to fit though no medical mainstream would confirm or deny the suggestion.
I was offered no pain relief - and an eye consultant I was referred to prescribed ointments with preservatives that exacerbated my eye symptoms 10 fold and then I found out , reading on the here and elsewhere that all eye ointments, lotions and potions must be preservative free.
By this time I was really upset as my treatment seemed to be one long line of mishaps and bad advice and I started looking outside mainstream medical for help and am deeply indebted to this amazing forum.
Sorry to hear you are also an island because the NHS won’t have you on its mainland.
What have you done / learned that made you better, if you don’t mind going over old ground, please?
I see from your own home page that had a dry mouth to the extent that you lost several teeth and were also diagnosed as not having Sjögren’s but that eventually your oral health improved. Was there a trigger / other external agent that improved it and gave you back your health?
I think it was just a question of time - I tried all the gels etc as recommended on the Sjogrens website - my taste buds are damaged and I can't taste anything like I could and there is no pleasure in eating anything.
Yes, when my saliva started to reappear, so did the loose several teeth, and having to replace any dental work I had had done previously so 1 bridge and a new bridge to replace 3 independent crowns in my front bottom jaw.
As saliva reappeared so the pain diminished and I read that saliva contains a painkiller 6 times more powerful than morphine.
As my saliva reappeared and I wasn't in full time pain, I decided to self medicate but I don't think the 2 were connected. I first tried a T3/T4 combo but within 2 months had switched to NDT and I'm into my fourth year now looking after myself.
Parked up and housebound.I wonder if there is a category for people like you they have left on the scrap heap that shows up in their records. There doesn’t seem to be any incentive I know of for doctors to rescue people from it, unlike the incentives for giving of winter flu jabs etc
This may be a stupid response, but have you tried paracetamol.
When I had a patch of skin removed........... for the 1st few days I could tell when it was approaching 4hrs (next dose). It really helped, which surprised me at the time. x
Hi Nellie Yes, I am alternating paracetamol and ibuprofen which does help. And probably - brain fog - not as regularly as you, so I’ll set a timer.
My lip has come up more swollen today and is suddenly very dry and cracked - despite the usual gallons of water I am drinking - and looking worse, which is as much why I ask as because of the pain. Thank you for your help x
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Numb lips and shortness of breath 
Swelling - lips and hands? 
Mouth / Lip dryness 
Do I really need a biopsy?!
