Feeling really down..

[Daisy]

Hi all,

I posted a while back & I have been reading through lots of threads today.  I am feeling really sad & lonely at the moment. I see my friends enjoying a 'normal' life & yet here I am with the inability to have a comfortable conversation because of my dry mouth.  Just to clarify, talking and socialising is one of my favourite things to do but now I am turning down invites because I just feel so uncomfortable.  I am actually starting to resent 'normal' people & even when I can hear my husband swallow his saliva, it's actually making me resent him :-( I just feel incredibly sad & alone in this disease.

I have an appointment to see an oral specialist on the 15th May so I still have a bit of a wait. 
I first started getting Sjogren's symptoms around 2 years ago but as per a lot of people on here my worries were dismissed when my tests came back negative.  I went through a long period of around 9 months when the symptoms went into a bit of a remission.  I was not by any means producing normal saliva but I was producing enough to not have to drink water, or chew gum / suck on mints all the time.

I am only young, I am 32 and what is really scaring me is the thought that in another 30 odd years this disease could have progressed even more.  Some days I don't want to be alive :-(  I feel so miserable at the moment. Please tell me this gets easier, any 'young' sufferers out there? Anybody else from the U.K?

Thank you

[DarleneB]

Daisy,
I am a retired nurse....I know the feeling of not having enough spit to swallow...let alone talk when I was under stress....working in the ICU that stress was every day I worked.
My primary.care physician diagnosed me as having.SICCA syndrome.
She ordered evoxac 30 mg three times a day..this gave me back my spit.  I don't think your insurance will allow you to.have evoxac in the UK....but there is pilocarpine ..
For your eyes. Punctual plugs can increase your tears. .my.temporary plugs are in 5 years already..one fell out.with me rubbing my eyes.  Restasis I also use...I put my open vial in the refridgerator and can get 2 days out of the vial....
The trick is to treat the symptoms even if you don't have the sjogrens diagnosis.   Ask the doctor to order the "early sjogrens panel "...I was negative on the normal testing they do..but came up positive on the early sjogrens panel.

[SunshineDaydream]

Sorry to hear you are bummed out, Daisy, but totally understandable given the nature of SS. It really can put a damper on the social life and strain relationships.

Your May 15 appointment seems far off when your suffering, but hopefully it will be a productive visit. Are you going for a lip biopsy, saliva test or something else? Do you know if the early test mentioned in the attached thread is available?  https://sjogrensworld.org/index.php?topic=30350.0  It would be worth asking the doctor if you can get a prescription for Salagen or Evoxac which help produce saliva. Makes a big difference in the ability to talk.

There are some young board members here, so hopefully they'll respond. In the meantime, if you're on Facebook you might want to check out the group "Under 40 with Sjogren's". It's a closed group so you have to contact the moderator to be admitted and your posts are not visible to all of your "friends". I'm not a member so I don't know how active it is.

[araminta]

Hi Daisy, I'm not young    but I am in the UK!

So sorry you are feeling low, but it's excellent that you have an appointment to see an oral specialist.   I know from reading other posts here that there are options available to help with saliva production, the specialist should be able to go through them with you.   In the meantime try keeping some chewing gum in your mouth all the time, you can always tuck it in the side if you have a conversation - this is what I do myself and it helps.   Xylimelts are useful to keep beside your bed for the night.   Don't drink too much coffee, tea, alcohol.

To the best of my knowledge there doesn't have to be a remorseless progression to extreme symptoms, and most people jog along with mild/moderate symptoms and learn to manage them fairly well.     

[A Mom on Spin]

Daisy,

I'm sorry that you are going trough such a tough time emotionally right now.  I think it happens to all of us at one point or another.  I am feeling a little resentful (and sorry for myself I might add) now too.  I was just thinking this morning about how so many people have the gift of good health and don't appreciate it!

But having difficulties and tough experiences in our lives also makes us better people.  We become more grounded, more compassionate, more grateful, and better aware of what is really important in life.  Just look at the many compassionate and empathetic people right here on this board!  Someone will always be here for you - even if it's just to listen!

Hang in there.  Our reactions to our illness can sometimes change when viewed from a different perspective.

Liz

[Daisy]

Darlene - I too am a nurse - well I say am a nurse but I am about to qualify in 4 months. Probably the most challenging thing I have ever done, other than cope with SS, is do a nursing degree. I can imagine working in ICU tough, especially with SS.  I can tell the difference between dry mouth due to Sjogrens and dry mouth due to my sympathetic nervous system in overdrive.  I bet there were a few times in ICU where you had the latter too, which I can imagine just adds to the problem!  So we don't have health insurance in the UK, as we are fortunate enough to receive free healthcare.  I will ask for one of these tablets.   I will ask about the early sjogrens panel of bloods - I have had the normal bloods that showed nothing.  Thank you for your advice.

Sunshine Day Dream - sadly, our NHS (National Health Service) can be a bit slow on the uptake.  I am just going for the first consultation, I imagine they will probably run saliva tests (I think you spit into a cup? Well that for me will produce ZERO!).  I will ask for these meds, I want to try ubiquinol as I know others on here have mentioned it helping but I am reluctant to try anything until my appointment incase it does help and they send me away, does that make sense? Thanks for the heads up about the Facebook group, i will have a search for them.

Araminta - Ah, another UK member, Hi! I have mints on me permanently at the moment and chewing gum too.  I need to get these mints for bedtime as I am waking up with a sore throat due to dryness. Where do you buy your Xylimelts from please?  You have made me feel so much better about the symptoms - I hope I will jog along with mild-moderate symptoms & we do know that more severe cases will normally come to forums but in my head I just keep imagining this getting worse, which of course is not helping the anxiety of it

A mom on a spin - Isn't it horrible when you see others go along without a care in the world? Obviously I don't want the people around me to be ill but my husband doesn't eat as well as me, he doesn't drink near enough water, eats way too much sugar and keeps the same healthy self, whereas there is me who takes care of herself and has been hit with a number of problems (I have fibro, tinnitus, vertigo...to name a few).  But yes, it does make you more empathetic.  I am so grateful for this board, I really am.  I am just reading things and scaring myself. I hope I am put on some form of medication to help with my symptoms.

Thank you for the comments all, I really hope to get this sorted soon

[araminta]

Daisy, I got my Xylimelts from the Mouth Ulcers Shop (you can google it).   I don't use one every night but it's nice to know I have them if I need them. 

[CureSjogrensNow]

Daisy,

Try the 40 Under Facebook page. You need to meet affected people your age also.

[Carolina]

Dearest Daisy,

In 30 years!   Dear Daisy, please try not to think of the future.  It isn't clear that this condition will 'progress' in the way that you fear.   And remember that medical scientists are constantly seeking more solutions and cures.  You will see new solutions when I am "long gone" (75 now).

Of course, it is hard when you are depressed and having difficulty.

Remember, Depression, Pain, and Fatigue are PART of our condition, and if you are not already taking an anti-depressant you should consider starting.

We need to find as many ways to improve our conditions as possible.

I also always have water with me, and sip when I am trying to talk.  And  yet, I am mostly hoarse from dryness.

Hugs,  Elaine

[Daisy]

Thank you Carolina - I just feel a bit down about it all. I was managing really well before the last few weeks but I have hit a really bad flare where everything just feels so dry and worry that it is getting worse.  I havent been on any medication for this as yet but I am have an appointment soon and will discuss medication with the oral specialist.  Does pilocarpine and the like actually help?

[engy]

I totally understand what you are saying.  Any friends I have left are off enjoying their short break we have and I'm lonely in pain and running off to doctor's appointments for some new stomach issues I'm having.

I had to take Evoxac for saliva and constantly drink water to help the dryness. Plaquenil kicked in after 3 months of taking it and it has helped my fatigue and pain tremendously!

I was diagnosed 7 years ago (I am 42 now) and my life is better now so try not to think your life is going to get worse. I also live a healthier lifestyle than my friends who do not take care of themselves at all.  I always tell my daughter: I'm the healthiest sick person!

Hang in there and post here when you need to: This place is THE BEST! Engy

[bluegardenia]

ciao daisy im in italy,your side of this world. i feel the same as you and this place and the great and compassionate people who come here really helped me more than any doctor and i swear u that i saw many in italy and also france and switzerland.
be prepared for your visit, write down all the questions  that u want to do, here most of people take pilocarpine evoxac or salagen for dryness, i cannot take it bec i have arrhitmias( sorry for spelling wrong). so may be u check your heart before start those mds, i did not know to have that and it came out when i insisted i wanted to make  48 hours holter .sjogren for me is very annoying most of all for eating. i cannot eat anymore pizza... well this seems the least of the problems but as u speke about social life, it became difficult to go out with friends. i cannot eat this i cannot eat that and it takes a long time to chew, never relaxed but always terrified to get choked. a
anyway even if im much older than u, as im alone, i have no family, im divorced and my son died many years ago, i worried also for the future. seems that i have primary sjogren so i do not have pain or other things a part dryness that affects mouth oesophagus etc. i was diagnosed  almost 4 years ago.
im sure that they will find something to cure this beast, this is becoming more known finally and dont be pessimistic, our mind is powerful and i noticed that the least sadness or the least worry have a big influence on symptoms. try to be positive, to be negative does not help u. i tell u this while im veryyyyyy pessimistic hahahaha

[Kathy57]

Daisy,

So sorry that you are feeling so down.  I think too many of us can empathize with you. 

I agree with the advice that has been given so far.  I think you will feel better when you start to get proper treatment.  I would push for the Salagen (Pilocarpine) as soon as you can.  I prefer Evoxac but Pilocarpine should definitely help the dry mouth.

As far as Depression is concerned.  I almost think it is normal for Sjogrens!  I didn't want to take an antidepressant but I did and I can say that it has helped.  Getting treatment is your most important option.

The illness has ebbs and flows and I believe that you will feel better after treatment.  It may take a while to feel the improvement but stick with it.

There is life and there is hope.  You matter!!

Kathy