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Living With Sjogren's / Re: Hi - not new here but i'm back
« Last post by araminta on Today at 08:30:19 AM »
Hi Daisy, You asked about the impact on my life.   To begin with the impact was significant, mainly because of the fatigue, and it's only in the past few weeks that this has lifted somewhat - it was worst during the first year.   It doesn't sound as if fatigue is particularly a problem for you, which is great.   The dry eyes caused me a lot of trouble as they got worse around 5 in the afternoon, so I never felt like going out in the evening because of the embarrassment of having red eyes.   However I managed (following a suggestion from this forum) to get rid of my blepharitis using tea tree oil, and I think the Hylo Forte plus warm compresses and lid cleaning have helped with this problem.   The dry mouth is manageable now, and I use saline nasal spray for the dry nose.   

I think you will feel a lot better if you start to address some of the dryness issues.   I suspect your worry about people noticing your dry mouth might be contributing to it, anxiety too can cause a dry mouth (this happens to my husband every time he has to speak in public, and he certainly doesn't have Sjogrens!).   Try to relax and enjoy your life as much as possible, try not to focus inordinately on your symptoms.   Frequent sips of water help, and I usually have some chewing gum in my mouth even when I'm not actually chewing it.

I hope you get help with the finger pain (which may have absolutely nothing to so with Sjogrens by the way). :)
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Living With Sjogren's / Re: Hi - not new here but i'm back
« Last post by cccourt1942 on Today at 08:06:39 AM »
Hi,
   My interest in SjS symptoms lays in managing them.  You are not positive for SjS.  Okay.  That's fine.  BUT..are you uncomfortable?  Are your oral manifestations making you uncomfortable?  Is the fear of oral dryness leading to something else stressing you out? The only one of those questions which you can control is a med for the oral dryness.  There are four of them.  A dentist can prescribe for you if a medical doctor won't.  Why?  Oral dryness can lead to excessive bacteria growth at night which can damage your teeth.  I know.  You can manage that discomfort.  You don't need a SjS dx for that med. 

     Hope you can destress at this time.  I know how those academic demands can make a sane person nuts!

     Good luck.  (also...Xylimelts...available at Amazon if you can't find locally)
ccc
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Living With Sjogren's / Re: Hi - not new here but i'm back
« Last post by Joe S. on Today at 07:23:42 AM »
Stress is part of the pain cycle. It does ramp it up pain. That is why the first thing I say is Don't Panic. The next is remember to breath.
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Living With Sjogren's / Re: Hi - not new here but i'm back
« Last post by Daisy on Today at 07:02:14 AM »
Hi Araminta & Joe,

Thank you for your replies..

Araminta - Sorry to hear you are going through the same thing.  It's horrible because in some ways you would rather have a diagnosis so you know what you are dealing with.  I have been going to the drs for a little over 3 years with weird and wonderful symptoms - a lot of neuro stuff and peripheral nerve stuff like numbness and pins and needles and also vertigo, which they have said is vestibular migraines.  Whilst I am not disputing it isn't migraines, I think some of it could be sjogrens.
I am glad to hear there are ways to manage it and I guess on this forum there are probably a lot of people who are sadly quite badly affected by the disease. I read somewhere that it is a very common disease so I expect a lot of people manage it in their own ways.  I also have fibromyalgia and that supposedly can cause a dry mouth but to this extent, I am not sure.
Do you mind if i ask you whether it has a huge impact on your life? i am anxious people can hear my mouth is dry when I speak.  I always carry chewing gum and mints in my pocket to help with it.

Joe - Thank you for the advice. It is definitely hard not to panic isn't it.  Especially when you don't know what you're dealing with.  I am hoping my GP refers me back to the rheumatologist as there's something going on.
Thank you for the meditation information, I will give it a go later.

Can sjogre's flare with stress? I guess any autoimmune disease can be flared by stress. I am currently under so much pressure with my dissertation (i am also on a nursing placement, unbelievably in an ENT unit that specialises in salivary glands!) so I think that that could be contributing to the flare, does anyone else's flare with stress?

Look forward to hearing from you all and your stories.  Thank you x
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Living With Sjogren's / Re: Hi - not new here but i'm back
« Last post by Joe S. on Today at 06:49:51 AM »
Welcome back to this forum Daisy. There can be a long full life after the diagnosis. Over time, we gain skills to manage our symptoms. You will find that you can regain parts of your life. Take happiness and joy where you find it.

When Pain comes knocking:
Don't Panic as panic increases anxiety and pain.
Remember to breath. Our natural response to pain is a splinting action which includes holding your breath. But we need that extra oxygen to relax our muscles and reduce our pain.
Meditation can be very helpful in managing pain but it takes practice without pain.

A simple meditation:
Get as comfortable as you and close your eyes.
With your eyes closed, look to the top of your forehead.
As you breathe in, think "I am" and as you breathe out, think "calm". Repeat for 15 minutes with slow rolling breaths.
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Living With Sjogren's / Re: Hi - not new here but i'm back
« Last post by araminta on Today at 06:23:24 AM »
Hi, I am older that you but have been in a similar situation for a couple of years.    I had all the usual dryness symptoms plus terrible fatigue to begin with - this seems to have gradually improved recently, after two years.   I was diagnosed with dry eye and am using Hylo-Forte eye drops, which are helpful.   The rheumatologist didn't think I had Sjogrens because Schirmer tear test was within normal limits and my bloods were normal.   I have the dry mouth - sometimes not too bad, sometimes very bad at night like you.   Have you tried Xylimelts - they're expensive but good to have beside your bed in case you need one.   Some people here find Biotene gel helpful but I seemed to be allergic to it and it made my mouth swell up.   I also chew gum in the day.

As you will have probably read on this forum, lots of people have these symptoms for several years before they get a definite diagnosis.    (And of course it's possible you don't have Sjogrens).   I think the best thing you can do at present is not panic (most people who have Sjogrens don't get it in an extreme form and can manage it), and look at things you can do to improve symptoms.   There is lots of advice here about that.

I do understand how you feel, I felt awful when all this started, but there is still a lot you can do to reduce the discomfort, and there is always support here. :)
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Living With Sjogren's / Hi - not new here but i'm back
« Last post by Daisy on Today at 05:53:34 AM »
Hi all,

I visited this site about a year and a bit ago as I was afraid I had symptoms of Sjogrens.  Well, as we all have probably been through I went to my GP and they sent me for bloods and to see a rheumy.  The rheumy sent me to an oral guy and he also sent me to a dry eye specialist. My test for the eyes was normal and they said they didn't think it was Sjogrens.  My bloods came back clear (as most do) and the oral guy said because I have saliva he didn't think I had it.  He was quite an ignorant man and at the time I could not be bothered to argue with him.  So the rheumatologist said he thinks I was clear and to come back if there was any problems. 

Cut a long story short, I have been trying to manage the symptoms on and off since, my mouth goes on and off dry. Some days I have normal flowing saliva and other days it's bone dry.  Just recently the 'flare' has got much worse and I am waking up with a bone dry mouth in the mornings.  The past few days I have had such pain in my salivary glands and one side is swollen.  I am fortunate enough that I don't have much joint pain bar one finger. 

I am finding it so hard to concentrate on my work (i am a nursing student and am in the middle of my dissertation) because the pain is so bad. I had a Dr's appt booked for a week today but I have just called the GP surgery and a Dr is calling me back this afternoon and will assess whether they need to see me.

I think it is sjogrens - in fact I am almost certain and I am crying my eyes out because I am 32 and absolutely terrified of what my life is going to become.  The dry mouth is so debilitating :-(  I am on co-enzyme Q10 and I read the post about it stimulating salivary production.  I don't know what advice I am looking for but i just needed to vent and cry at people who understand.  I am in agony and I am terrified of living my life like this for the next however many years!

Please help!
Thank you
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Living With Sjogren's / Re: Update on multisystem issues and toothache in my knees?
« Last post by MAT51 on February 26, 2017, 09:48:06 PM »
A lot of thoughts, and I'm very grateful. I suppose I choose to avoid the kind of drugs you mention because my intolerances to date have led to worse pain. Tramadol, for example, gives me stroke-like turns that led me straight back to hospital. The NHS is bulging at the seams just now and one of the reasons given for the huge over demand is said to be because of severe drug reactions. I've had anaphylaxis twice to DMARDS and Pancreatitis too plus a drug for RLS hospitalised me overnight with narcolepsy and severe chest pain.

Pain management clinics have a year long waiting list here in most areas. Mine would not be in my large local teaching hospital because I live across the bridge just on the other side in a different county (state) so people in my area are being sent to pain clinic 40 minutes drive away to another hospital where there is no system for sharing of info between the hospitals - so my rheumatologist and neurologist would not be able to access my notes on what was recommended by the pain clinic for me or discuss with colleagues running this clinic. So I haven't requested a referral from my GP for these reasons. I've tried morphine in hospital and it did nothing at all for the SFN. The thing that helped most was Naproxen but it drove my gastritis nuts, even with stomach protectors - which I also have tolerance issues with.  Same with all NSAIDs and opioids - codeine worsens my already terrible constipation. IV paracetamol was wonderful for me but obviously it was only available when in hospital so I just stick to the oral stuff - which barely takes the edge off when things are flaring, as they are now.

Out of interest - do you think this toothache/ bone pain in knees, shins, ankles and feet sounds like SFN as doctors say - or could it perhaps be Enthesitis? I know you have PsA so will probably experoence this a lot. I'm starting to wonder if all this pain can be SFN whether it feels so much deeper? It would be interesting to know your thoughts on this



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Living With Sjogren's / Re: Update on multisystem issues and toothache in my knees?
« Last post by anita on February 26, 2017, 07:31:21 PM »
It doesn't sound as if your pain is 'managed okay', if you are finding yourself on the ground at any point in time.  There are many other options...topical (Lidocaine, capsaicin, biofreeze, etc), TENS machine, and there are others meds being used all the time.  Of course there is the last resort (which I had to choose after maxing out of other meds)...opioids and/or tramadol. 

Do you have the option of seeing a pain mgmt doctor?  This would be your best bet.  They know ALL the new meds being used for SFN.  There is even DNA testing for pain meds (I have had it done) to determine which meds are effective for ME...based upon my DNA, and which might cause increased side-effects for ME.   It even takes into consideration other meds you are taking and possible interactions.  It covers ALL meds used for pain relief...from simple Tylenol, to strongest opioid...and everything in between (ALL antidepressants---there are MANY used, ALL anticonvulsants---also has many options).   It certainly would be worth asking about (seeing a pain mgmt doctor).  Just a thought.
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