Sticky Blood-Hughes Syndrome Support
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Sorry!! Not around so much at the moment! :-(

Hi all

I just want to apologise for not being around enough, having a few issues and struggling to juggle everything!!

Still got the chest infection, usually stops around spring time, but not going this year!! Painful and tiring!:-(

The pub we moved into last November is going ok, but the pub company that owns it are not sure whether to sell it or not, at the moment we want them to hang on to it, cos we need a years books to get the loan to buy it ourselves! If they sell it we got to move and I don't want to move again, just don't have the energy!

My son 12 who has autism and asthma, has been experiencing joint pains, headaches, rashes and ear problems has an appointment with an orthopaedic paediatrician next week, just so worried, hoping its nothing autoimmune!!

My optician checked eyes, no problems with plaquenil, but concerned about dryness of eyes, asked if Ide been checked for sjorgens syndrome, recommended preservative free artificial tears, anyone use them, do they help??

New dentist also observed damage to gums, ulcers and mouth dryness, also asked about sjorgens in view of Hughes diagnosis, yeah she'd heard of Hughes!

A rheumy at local hospital previously dismissed sjorgens, mind she dismissed everything! :-)

Will be taking a list and information to gp, hopefully Friday!

So crazy times, when all I want is peace and quiet, just a restful few days would be nice!

Will try be around more during summer holidays! Sorry for the long waffle, time to go!! :-)

Wishing for better days for all!!

Take care gentle hugs love Sheena xxxxx :-) :-) :-)

7 Replies

Hey you, glad you told us, xxx hope things get a bit better soon x You have an awful lot on your plate, and we do all still notice you on here! Just sent you a private message xx

Mary F xxx


Hey Sheena! Sorry you have so much to think about. Hope things ease up soon.

Sounds a lot like Sjogrens doesn't it? I use Vis-med eye drops which are preservative free and my eye guy just recommended Hyabak drops which are almost the same make up and come in a nice little dispenser and good too. He says use them up to 5 times a day.

Keeping fingers crossed for your son. Let us know how you are all doing when you have time. Thinking of you.


Lynn xx


A dentist who recognized oral sores as an autoimmune symptom.... that is impressive. Have you and your family considered going off gluten? I first saw this suggestion on a British website about peripheral neuropathy, It suggested that anyone with an autoimmune condition go off from gluten and maybe, dairy, as well. It has been the best option for myself, my son and my daughter.


hay buddy-- get that rest you need ---get feeling better ------------------ me


Hi Sheena, I just wanted to tell you that of all the medics I've dealt with, my NHS dentist is the only one who knows about Hughes as well!! She has taken me through two extractions with adjustments to my Clexane injections, even opening the surgery early to enable me to take my injection without too much delay, which could leave me unprotected. I've been with her for 25 years, and think she's wonderful. She also mentioned Sjorgrens to me because of the dry mouth and eyes. Wish my GP cared as much...or even KNEW as much!

By the way I'm an ex pub landlady too - couldn't stand the hours (or the pain) anymore and came out of the trade in 2000, going on to become a trainer/assessor. I'm thinking of you!

Larraine x


Hi Sheena

Wishing you well and sending you some energy!!! Hope you dont have to move again and hope the appointments go well for you all.x

Big hugs

Love Sara x


Hi hun, I know you are going through such a hard time at mo' :(

I wish the docs would hurry up & get you ok!! You're such a lovely lady & don't deserve all this xx

Good luck with appointments too.

As for the pub company.....they need shaking!!

I'm so glad we came to see you the other day :) we'll have to come over again....or drag you away for a bit :)

Sending big hugs to you till I get to see you again xxxx


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