Sjogren's Syndrome

[littlemim]

Hi,

I'm a 37 year old woman and was diagnoised with Primary Sjogren's Syndrome in my early 20s. It didn't cause much of a problem back then except a bit of a dry mouth and persistant, recuring anaemia, but is having more and more of an impact on my life now with vasculitis flares, nerve damage in my leg, and cronic fatigue.

I was just wondering if there were any other Sjogren suffers out there?

LM

[justmuddlingalongsomehow]

NO advice but wondering if this is the condition that Venus Williams has been diagnosed with? Hope her case raises the profile a bit for all sufferers.

[Weegiemum]

I don't have Sjogrens, but I was tested for it, it was top of my consultants list (after Ovarian Cancer ), I eventually got diagnosed with an inflammatory polyneuropathy (CIDP), many of the symptoms are the same - nerve damage, numbness, and the crushing fatigue. I also have a permanently numb spot on my lip from the salivary biopsy for Sjogrens.

Hopefully sooner or later someone will turn up who has it - I was tested partly because my grandma had it. These rare, weird syndromes fairly regularly seem to pop up on here. I was diagnosed 18 months ago age 41.

[littlemim]

Hi justmuddlingalong and Weegiemum,

Thanks for replying. I don't know anyone else with Sjogren's and it would just be nice to have someone to moan with. :-)

LM

[TiredDog]

Littlemim how about this site here. Apologies if you already know about it. Sorry you are struggling with this and hope you get some support

[littlemim]

Hi TiredDog,

Thanks for your message. I have looked at the BSSA site before but without coughing up to become a member, there's not a lot to see.

LM x

[Weegiemum]

Hi again.

Meant to say in my last message they've not ruled Sjogrens out completely. As I said my Grandma (now 92) has it - she uses artificial tears and saliva, and has for 20-30 years. My biopsy was "undefined" and they plan to do it again in 5 years - I am at the very lowest tear level to be allowed to keep wearing my contact lenses and only realised when they mentioned it that my dry mouth (that I always blamed on my antidepressants) was still bothering me 2 years after they stopped! One of the biggest issues that has them still querying Sjogrens is my peri-oral numbness - the lower half of my face is often numb, meaning I can't play my clarinet and sometimes my tongue is affected and my speech is poor.

For now we're living with the CIDP diagnosis - it's Chronic Inflammatory Demyelinating Polyradiculoneuropathy - lots of fancy words for "you can't feel your feet and you fall over if you shut your eyes".

I don't know where you are - we're in Glasgow and I get a fabulous service from neurology/neuroscience at the Southern General in Glasgow. Plus my IVIg treatment. If you're anywhere in Central Scotland I'd be happy to meet up.

Take care, I hope you find someone to talk to. CIDP gets diagnosed about 50 times a year in the uk - very rare! I've only met others really on a support website on facebook - is there anything like that for Sjogrens. If not you'd be very welcome on the GBSSG-UK - it's for Guillan Barre syndrome and the chronic version (that's the CIDP I have) but there are others with different neuro conditions.

[littlemim]

I don't really suffer with my eye, but my mouth can get quite sticky (rather than dry). I'm constantly anaemic and fatigued, and I suffer from vasculitis.

I'm smiling reading your post because I play the clarinet too, or used to. It's in the house somewhere, but I'm not sure when I last played it.

Unfortunately I couldn't be much further away from you as I live in Wiltshire. There's the BSSA (British Sjogren's Syndrome Association) but you have to pay £25 a year membership before you get access to the message boards.

LM x

[ruberpapilio]

I have Sjogrens secondary to systemic lupus, so apart from the dry eyes, mouth etc which are definitely the Sjogrens, its difficult for me to distinguish which of my symptoms are caused by which disease, so I'm probably not the best person to help you... But the BSSA has a Facebook page you can join and ask fellow sufferers questions etc which can be quite useful (and it's free! :) ) Forums for illnesses can amazing support but can also be a bit frightening and depressing, try to stay positive :)
HTH x

[littlemim]

Thanks RP. I'll have a look on Facebook.

Hope your feeling ok at present.

LM xxx

[thegiraffewiththepurplescarf]

I know this is an old thread but just been diagnosed with sjogrens. I'm 37 and had the main symptoms of joint pain and fatigue for the last 4 years. Started getting the dry eyes and mouth last year.

Just started on hydroxychloriquine. If it gets rid of the fatigue I will be happy.

[HappyFlappy]

Ressurecting a zombie thread, I know, but I've recently been diagnosed wth Sjogren's syndrome. The worst part is the fact that I'm chronically exhausted no matter how much sleep I get - sometimes I can barely put one foot in front of another. Memory is all over the place - sometimes my thinking is very wooly.

Am developing peripheral neuropathy - feet in particular are often agony; gastrointestinal symptoms, too and of course dry eyes and mouth (can't wear my contacts any more and sometimes speech and swallowing are very difficult because I have so little saliva).

oint and muscle pain often excruciating (not exaggerating - I could cry). Sometimes symptoms ease enormously, but then flare up again.

Just wondered if any of the sufferers on this forum had any tips for coping, or, indeed, just fancied a whinge!

[NeverTwerkNaked]

Hello, yes I have this although fairly mild- excruciatingly dry eyes and mouth and fatigue are my only problems so far...

[HappyFlappy]

The dry eyes and mouth drive you crackers, don't they? Plus, eyes get very red so I w
look like a werewolf has
lf the time (could be my cheap haircut, mind)

[NeverTwerkNaked]

Yeah they drive me nutty! But then on the plus side it was my opthalmologist who twigged it was Sjogrens, when all the Drs were mystified

[redannie118]

Hi yep me too , sjogrens secondary to scleroderma. I find I have a lot of nasal problems, constant nose bleeds and chronic sinusitis. My eyes and mouth dry up so much they stick together and I get a lot of mouth sores too. Like a poster above I too have awful joint point pain and crushing fatigue,but that could be down to the scleroderma too. Having a bad flare at the min so hello to you all !! Health unlocked is a brilliant on line forum with loads of good advice and support-it's the only one my Rheumatologist recommended

[HappyFlappy]

Hi Redannie - thanks for the recommendation re: health unlocked. I get lots of mouth ulcers too, but I am also very prone to shingles, so when I have a flare up my immune system just says "Sod this for a game of soldiers" and buggers off for a fortnight, and everything hits at once - does this happen to you, too?

[redannie118]

Yeah it does. I also get pompholyx excema, but the blisters are the size of dinner plates and always get infected :( sorry about the shingles, I've had that twice in the last year and it totally sucks- hope you feel better soon !

[endofthelinefinally]

My friend has SS. After 6 years of hell she managed to transfer to a different rheumatologist. She was put on hydroxychloroquine and it has changed her life.

[HappyFlappy]

pompholyx excema

Had to look this up Redannie. You poor soul! It looks horribly painful and itchy - I'm lucky enough to have avoided that (so far).

Finally - I think this is the stuff I've been given. Haven't got it to hand and would have to check. I've got some stuff for peripheral neuropathy too, but it's just a painkiller.

[pletmorfar]

Hi, I am being treated for Sjogrens Syndrome (3 years now). Each year I feel worse. I am on plaquenil and god knows if it is helping. My eyes are very dry, my hands and feet tingle and my fingers can get numb especially when I wake up. I have bad insomnia and terrible hairloss. Anyone have hairloss with this? Its hell to be honest.

[Lexibelle]

I was first diagnosed with osteoarthritis in lower back and knees that was 10 yrs ago.
Then 3 yrs after routine blood work was done I was diagnosed with
RA and after seeing the specialist he said I had Sjorgrens Syndrome.
At first I didn’t really have much of the symptoms just the dry eyes and
mouth. But over the last month my symptoms have escalated to constant fatigue,aches, stiffness in almost every joint. The pains in my
Lower legs and feet are really bad.
Didn’t take the medication given at the time because my symptoms were not as bad. But now I will have to give the Hydroxycline a go and
Hopefully it will be ok with my other medication.

[mickytanky]

SHJOGRUNS SYDROME hi ,I have rhuemathoid arthritis & sjhogruns syndrome, over Christmas I have had a flare & have been in alot discomfort, my surgery makes several problems with medication ,I have to look out for myself not just do as they wish ,as they are often wrong, Google helps me find correct information.
So I'm writing this because it may be of help,my chemist is good but can not always get required medication,I have been in alot of discomfort over Xmas because chemist only supplied me with minims saline and carmellose 1% eye drops pres free,these irritate my condition,don't like them BUT CARMIZE CARMELLOSE SODIUM 1% are very good soothing my eye problem greatly, because of chemist inability to get this medication I have had an awfull Christmas ,however I managed to find carmize 1% on eBay bought some and am relieved to say they arrived today so my eyes are much better no pain ,& I hope the flare goes away soon.
I find in these times 2018 one can not trust surgery's chemists & sometimes hospitals , one has to look out for themselves ,Google what I'm told so that as far as possible I can be sure it's good for me ,my surgery recently wanted to give me shingles vaccination, I agreed but decided to check Google & local hospital finding that a patient takeing LAFLUREMIDE which I do should not have shingles vaccine as it could make me I'll,why did my surgery not know this. Check things out don't just agree .

[mickytanky]

carmellose 1% eye drops GREEN BOX not good for me.×
CARMIZE CARMELLOSE SODIUM 1%. PINK BOX ✓

[NameChangeToAvoidBeingFound]

I have it, I was diagnosed at thirteen and it first caused problems when I was 14ish. Now I have mild arthritis in my hands, hips, knees, feet and ankles, choke on food regularly and my teeth are becoming damaged.

So far I'm attempting to lose weight and improve my general health by eating so much fruit, veg and lean proteins. I refuse to let this hold me back or down as I'm only 24 and have an entire life to lead. I have other health conditions, but none scare/worry me quite as much as what this will do to me as I age.

I want to get married and have a family and a career and go on holidays and live.

Right now I'm organising a trip with friends to europe to go to PortAventura in the summer. Last summer we went to Disneyland Paris. In early December a friend and I went to London to visit another friend and we saw a show and did a load of shopping and touristy things. I went to visit her and another housemate who was staying with her on the 19th and we went to the cinema and the local christmas market and baked then we went to visit another friend on the 21st for his birthday, she left and I stayed with him and his family till the 24th and I'm planning on doing a lot of traveling myself and seeing and doing new things when uni isn't as stressful as it is usually.