Does this sound like Sjogren's

[waddle147]

First time poster who would appreciate some feedback.  Sorry for the long post but it's a fairly complicated issue.  I'll break it up as much as I can.

I've had ME/CFS since the end of 2009 and been bedridden for the last 3 years.  Over this time I've suffered with increasing dryness, but nothing really impacting my life too much beyond the ME.  I couldn't take baths without my hands being wrinkled, and I couldn't chew chewing gum because it would give me horrible dryness all over (more on this later) but basically the dryness didn't impact me too much.  My stomach also got worse at dealing with things, and I could eat less foods without reactions.  Within a few months I couldn't eat curry without feeling miserably tired for four days after it with diarrhoea, and eating onions made my nose run constantly and basically give me fever symptoms (sweating all over, sore head etc.)

I was taking a Tesco multivitamin and a Holland and Barrett vitamin B complex throughout this time (if I didn't take these specific tablets every day I was very tired and in a lot of pain) but in February Tesco for some reason changed their tablet and the new one was completely incompatible with my system.  I felt very tired on this one and was constantly going to the toilet.  Also, the drying out accelerated to an extraordinary degree.

I should point out that the dryness isn't just isolated to a dry mouth or dry eyes, it is body wide.  It's almost as if there is a limit on how much fluid I have in my body, and if I use more than this amount then everything in my body will go dry (eyes sunken, roof of mouth completely dry and a compulsive thirst which doesn't go away with drinking, hands dry).  I can't sleep at all when I get like this, but have to wait until the body regulates itself to make up for the overuse.  It's actually very similar to CFS when people do more than their energy allows them to do.

The thing which historically has made me like this most is chewing gum.  Had to stop chewing gum 2 years ago because of this.   Additionally, eating something particularly dry (tuna the worst offender) and diarrhea does this.

Anyway, by the end of April on these new tablets the dryness was so bad I was sleeping for an hour a night and could only eat soup.  For the record, the dryness was even worse without the tablet.

I then got some old Tesco multivitamin with iron from online, which immediately gave me more fluid in the system.  The tablets I was taking didn't have iron in them but they were made prior to the change.

I was able to eat 3 meals a day when I started these and get a full nights sleep whereas before I basically couldn't eat or sleep at all.

However, the dryness was still getting gradually worse and now it's at the point where again I'm struggling with eating and sleeping.  I can't take my vitamin B complex more than twice a week any more because it gives me diarrhoea.  My finger tips now wrinkle when I sweat.

NHS Doctors seem to be less than useful.  They've give me stuff for dry eyes, nose, mouth etc. but none of it works because it doesn't correct the underlying issue.  Only time I ever got any sort of referral on this subject was in Feb 2012 where I got sent to someone who did the dry eye strip thingy (Schirrer test I think it's called).  They saw me for five minutes, said the left was normal and the right was slightly dry and told me I should go to cognitive behaviour therapy.

If it continues to get worse I will die.  That much is obvious.  If there isn't enough fluid in my body to allow me to eat without going into the super dry state I outlined above then it's going to be a straight choice between eating and sleeping.  Does this sound like Sjogren's to anyone?  I'm likely to go private now as I do have a bit of money but I have no idea where to start or who to see.  I'm from Northern Ireland.

Thanks for reading,

James

[ellenkerr]

James, I'm sorry you are so sick.  Sjogrens can cause a lot of things, but I'm not sure if that is what is going on with you.  I would tell

you to not give up, but to try to find a doctor or hospital that can help you stay hydrated.  I wish I had the answers you need, but

unfortunately I don't.  There are some wise people on this site, perhaps one of them may have the answer.  I wish you the best.

[Joe S.]

Your doctor has to be the one to tell you you have Sjogren's or SICCA. Sometimes medications can cause symptoms of Sjogren's so can other auto immune (AI) diseases. While eating you may have to have a carbonated beverage with your meal to help you swallow. Here is my standard welcome with tips that help most AI diseases.

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.

[LadyDi]

James, I am sorry that you are feeling so sick. Sjogren's is a very tricky disease...... in that so many present with different symptoms to different degrees.

There is loads of very good advice, as well as sympathetic ears on this forum, however, it is not a substitute for a formal diagnosis and treatment by a medical doctor. I do not know how your healthcare system operates in Northern Ireland. Here in the U.S., most primary care doctors will refer patients out to a specialist. The specialist to see for Sjogren's and many other autoimmune diseases is a rheumatologist.

Try to keep connected to this forum, as there is alot of great information here. Please speak to your regular doctor about your symptoms, concerns and suspicions re: Sjogren's or other possible diseases.

Feel better.

[Styx]

If it continues to get worse I will die.  That much is obvious.  If there isn't enough fluid in my body to allow me to eat without going into the super dry state I outlined above then it's going to be a straight choice between eating and sleeping.  Does this sound like Sjogren's to anyone?

Hmmmm. I still suspect that you have Sjogren's, but this tradeoff between eating and sleeping is not consistent with Sjogren's at all. Sjogren's is not a disorder of insufficient bodily fluids; it's a disorder of insufficient emission of bodily fluids. So as long as you are sufficiently hydrated, your glands will each independently function as best they can. One gland can't "steal" fluid from another gland unless it makes you dehydrated, in which case one can just drink more water (and note that, for a Sjogren's sufferer, this should be even less likely to happen than a normal person since by definition your glands are probably impaired, making dehydration by emission more difficult).

Can you go into more detail about why you have difficulty sleeping?

Styx

[Styx]

Also, many of us actually chew gum to help alleviate our symptoms and mitigate decay (e.g. with Xylitol gum).

Hmmmm. I was thinking that perhaps something you are eating might indirectly cause dehydration via diarrhea if that is common?

Styx

[eye2dry]

waddle147

hello.

sounds like dehydration.

more fluids going out than coming in.

I am sorry you are having such a tough time.


eye2dry

[Katybarstool]

Waddle, welcome!

You could contact the British Sjogren's Syndrome Association (BSSA). They may know of doctors in Northern Ireland. Otherwise you could contact Dr Elizabeth Price in Warwick, or Dr Simon Bowman in Birmigham. They are both excellent Sjogren's specialists.

Kathyx

[finallyadx]

Dear Waddle - welcome, so sorry that you had to seek out this forum, but glad you found us.  You will find folks on this board to be supportive and knowledgeable.

What you describe sounds like it could be related to sjogrens or some other autoimmune disease, but as previous posters stated you need to be dx'd by a medical professional.  If there is a board in Britain that you can contact as a previous poster stated, I would start there and try to find a PCP who can refer you to a rheumatologist who can do testing to try to determine if you have an autoimmune disease or what else may be going on with you.

Sjogrens can be drying but some of what you are describing sounds like possibly something else is going on.

I sense your frustration and I feel for you and how sick you must be at times.

If you cannot advocate for yourself, find a friend or someone who can go to the drs appts with you and find a healthcar eprofessional who is willing to do various testing to try to get to the bottom of this.

Hang in there - keep us posted.

Sending positive thoughts and prayers your way.

[paisley62]

Hi,

You don't have to guess if you have Sjogren's or not.  You need to go to a Rheumatologist and get tested for ANA, and also SSA and SSB antibodies that are all typically positive in Sjogren's Disease.

In the meantime, drink plenty of water if you are dehydrated, and when dehydrated I drink sports drinks or Pediolyte, sugared or sugarless, that have ions in them, like gatorade, or anything with potassium, sodium, etc., that sports people like runners drink when running.

None of us can say whether or not you have Sjogren's.  As was said previously, only a doctor can tell you that. 

If you don't have an auto immune illness, then perhaps the Rheumatologist can point you in the right direction to get the help that you need badly.

Don't think about dying, although I believe you totally.  Just make the huge effort to take action and get to a doctor fast!

If one doctor doesn't work out, try another.  A lot of doctors cannot help us, even if they want to, while another one down the road can help you immediately.  Many of us have had to change doctor numerous times before we received help, or a proper diagnosis. 

Yes, the first thing that they told me was that I was depressed, and I knew I wasn't.  Then i got caught in another trap of fibromyalgia/chronic fatigue syndrome.  It took me quite awhile to get out of that box, two years to figure it out, and then I thought I had MS.  Turned out that I had Primary Sjogren's, which I had never heard of.  The point here is that getting a proper diagnosis and proper treatment can be a long journey, so be prepared to hang in there until you get the help you need.  Getting properly diagnosed took me five years.

[waddle147]

Thanks a lot for all the replies.

I have never found anything anywhere on the Internet to suggest that chewing gum actually makes dryness worse (and believe me I've looked).  The first time I got that weird dehydrated feeling through chewing gum was 2011. 

Yet I don't know about a gradual dehydration either.  I always drink quite a bit, sweat excessively if anything and my urine is rarely dark (usually a light yellow because of the vitamins but on occasion has been clear).

When I "overuse fluids" as I explained in my first post (which every doctor looks at me as if I'm mad for even suggesting) it's more difficult to go to sleep and to stay asleep. 

Normally I sleep through night to morning, maybe wake up twice but not for any time.  I sleep maybe 10 hours because of the ME, say from 2 am to 12 am.  The drier I get the more disrupted my sleep is.

When I do the overusing thing I get a really bad thirst which doesn't go away no matter how much I drink.  I remember the feeling actually went away one night after 5 or 6 hours without me drinking anything.

This is combined with sunken eyes, really dry palms and sore legs (I get sore legs and arms anyway when I over-do things re my CFS).  Generally my arms and legs are in very little to no pain.

In this state it is very difficult to get to sleep, and typically when I do I'd wake up much earlier (say if I went to bed at 2 I'd wake up at 6 in the morning and be unable to get back to sleep for an hour).

The worst it got was in April before I switched multivitamins.  I was able to eat only soup (cups, not bowls) with nothing really solid in it.  For a few days I slept for literally an hour a night because the overuse had gotten that bad.  Talking was difficult at this time.  I was at the time drinking 3 litres of water a day but it made no difference.  If I hadn't found the new multivitamin there is absolutely no doubt about my fate.

I get the dryness feeling from eating milk products as well, and I don't agree with wheat products (although of course the celiac test came back negative).  Both cause diarrhea and consequent dryness.

GPs think I'm wasting their time.  I can understand where they're coming from.  So many tests and not a single thing ever found.

I once got some Diarolyte but it had no effect.

Cheers,

James

[warmwaters]

As others have said, you will need doctors to help you assess this. Let me through out some possibilities, sadly, none of these are mutually exclusive. 

You have Sjogrens as part of your other autoimmune issues. Sjogrens can certainly have dryness and GI issues. 

You have some food allergy/ sensitivity -  Some of your descriptions of eating and having worse problems could point in that direction

You have celiac, which can cause many of the symptoms that you describe.

There are probably other possibilities, so do see some doctor(s) and let the testing start.