Hi - I'm new and would love your thoughts and ideas

[jaygee]

Hi - I live in the UK and have had dry eyes since ever I can remember.  I'm now 49 yrs old, but when I was in my teens I blamed the eye problem on a change of soap or mascara 

When I started having really sore eyes, in my late 20's, that occasionally flooded and burned - as if I was peeling onions, I saw the optician who asked if I had any aches and pains.  I did, but didn't realise there was a connection.  I went to the doctor who suggested rheumatoid arthritis although the blood tests were borderline.  Around that time I had real pain in my hands, shoulders, etc and was told I had tendonitis.  I had plaster casts put on both arms and then splints.  I couldn't even hold an empty cup.

Then, over a period of time, my pain symptoms resolved, but the eye problems remained.  No-one really mentioned Sjogrens.

I have had punctal plugs in my eyes many times, both upper and lower lid.  I now have scar tissue and you can't even see the tiny drainage holes.  I don't use any drops or visco tears, but maybe I should as daily my eyes are dry as the day progresses.  Air conditioning kills me, as does a light breeze.  For me, a light wind, change of room, bright sunlight, etc makes my eyes stream.  And it hurts, too, as if someone has dipped my eyeballs in acid    The rest of the time my eyes just feel, well dry

I am a keen horsewoman and also keep dogs.  I had a bad fall from one of my horses last November, and this caused me serious neck and back pain.  In March this year I also started to get sensory problems in both hands and sometimes in my feet.  The doctor sent me to a spinal surgeon thinking that the fall had perhaps trapped a nerve and I have had MRI scans which just show wear and tear in my neck and lower spine.  I also had nerve conduction tests and the spinal specialist says I have carpal tunnel.  He is about to refer me to a hand surgeon for the carpal tunnel and to a physio for the residual neck and back pain.

However ...... and this is where I hope you can help me.  I don't think that my problems are to do with the fall from my horse.  I looked into Sjogrens and found that I appear to have symptoms that relate to this illness.

I have IBS, I have the tingling, burning and itching in both hands and feet.  My skin is very dry.  I get brain fog, but didn't know that's what you guys call it and used to say  "I am thinking through treacle (Molasses)".  My tear ducts have been permanently plugged for 15 yrs plus and I have a dry mouth (which I thought was abnormal thirst!).   I am so tired today and have been for a few days, that I could almost lay down anywhere and sleep for a week - that's if my hands would let me!  I don't think it's carpal tunnel, I think it's another aspect of Sjogrens.

My plan is to go to the GP and suggest this to her, but I hope she doesn't think I am being "clever".  I would love something to take this awful fatigue away - it's like I can't be bothered to do anything - even get dressed, this morning 

So any idea what I should say when I go to the GP?  And also can anyone suggest what meds help with the fatigue and pain.  I am not taking any meds at the moment and want some - NOW PLEASE!!!!!

[nice gal]

Hello jaygee,

I'm not exactly new but don't post much. The first thing I would say after reading your post is that you definitely should be using eye drops, the dryness might over time damage your corneas, I have abrasions on mine which cause the sun sensitivity, my doctor likened it to looking through a dirty windscreen. You may well have SS and you can ask to be tested for it, in my day (1988) the diagnosis rested largely on the results of a lip biopsy, but it may be done with blood tests only now, I'm not sure. Anyway, a firm diagnosis would help. The trouble with any autoimmune disease is that if you suffer from one you may well suffer from others as well, which is why SS is associated with so many different symptoms that could equally be reumatoid arthritis, lupus, Raynaud's,  thryroid disorders etc. All I can say is that your story is very familiar to me, and I have had repeated bouts of acute tendonitis in shoulders, elbows and wrists (resulting in frozen shoulder, tennis elbow and carpal tunnel syndrome), plus dry skin (well, dry everything really), low thyroid levels, Raynaud's, punctal plugs etc. I have a memory like a sieve but I don't put that down to SS, more to age (just turned 63).

With all three tendonitis sites cortisone injections have proved to be very helpful and I have avoided surgery on my hands. I also use wrist splints at night when the pain flares up (which the hospital can provide you with). If it's any consolation, I experienced the extreme fatigue for a long time when I was first diagnosed, and then I really did have concentration problems, but it eventually went away and (touch wood and cross everything) has not returned. As I've mentioned somewhere else, the tear production has also returned to an extent, so there's always hope that things will spontaneously improve. When I was fatigued I was lucky enough to be able to go to bed, I think sleep is perhaps the only answer, but I'm sure others will be along with lots of helpful hints for you. I don't know about medication, I don't take any and never have, apart from pain meds for the frozen shoulder etc.

As for your GP thinking you are being 'clever', it really depends on how open-minded she is, but I do think it's important to stress your point. When I had huge weight loss and digestive complaints and swollen lymph nodes I said tentatively to several doctors that I was concerned it might be lymphoma (also associated with SS). I was ignored, tests were done for colon cancer etc but it wasn't until several years later when a lymph node in the breast area was investigated that I had a biopsy and hey presto, guess what, it's lymphoma! So do press your case.

I'm sorry I can't be more helpful. You've been having a terrible time and I hope your GP will listen to you with the sympathy and respect you deserve. All the best, Claudia

[Dolly Dimples]

  Welcome to our site Jaygee,  I am so sorry you are having such a bad time .

         Claudia is absolutely right, you must keep using eye drops , and make sure they are preservative free!
I know exactly what you are talking about as I have the same bother with my eyes, open windows , Air conds, any cold air, etc'  are no-no's for me too..

             As for your Doctor, just remember that he works for you, and it is not a sin to tell him that you have been reading up on all your problems and came

to this site where you find that you may have SS...    (you may not , of course)  I'm in the UK too, and  I went to my Doctor and asked him to change my prescription to the eyedrops and
mouth gel that had been recommended on this site, he gave me them..
  If I read anything that is relevant to my health, I take that to him too..
  Jaygee, you and no one else is responsible for your health , so never  be afraid to let your GP know just exactly  how desperate you are... Do not let them fob you off..  keep in touch with us, bestest wishes, Dolly

,, 

[Linda196]

Hello and welcome, Jaygee.

I don't think your doctor will feel you are being "clever" by wanting to know more about your own health...of course a lot of gaining a Dr's cooperation is in how things are put to them! Our Scottie has a great approach...she mentions that she read/heard/was told of a particular thing (disease, treatment, whatever) and asks, in their professional opinion, if they feel it's a possibility in her case. Gives the Doctor a great opening, but still leaves them "in charge"! (Always reminds me of an old joke...husband says "I'm in total charge or our marriage.....and I have my wife's permission to say so!")

Once you have the GP interested and thinking Sjorgren's, you can ask about blood testing (ANA, anti-SSA and anti-SSB, among others), and treatments like Plaquenil.

Using preservative free drops is a great idea for you, and possibly some sort of glasses or goggles that protect your eyes from wind or air conditioning drafts (something wrap around that shelters from the side as well).

I'm sure that, as you read through the posts here, you'll learn a lot more helpful hints and suggestions, things you can use in dealings with doctors and in coping on a daily basis. You will also meet our growing UK group, and may even find someone near you!

[Scottietottie]

Hello Jaygee 

Welcome to Sjogren's world.

I agree very much with what the others have said and think that your symptoms need treatment dx or no dx. Preservative free eyedrops are the best. Do you see an opthamologist regularly?

I'd certainly run the possibility of SjS past your doctor. Your symptoms certainly sound like it.

Take care - Scottie 

[lesmom]

Hi, Jaygee and welcome.
I too am an advid horsewoman and have had some good spills in my life that I thought had been a part of my problem. It seems like a lot of my pain is worse on the side that  I landed on the most, but my regular doctor doesn't know if that's it or not. I can't get into the rheumatologist until late July. So it will be interesting to hear what she has to say for sure. I do have Raynard's and fibromyalgia for sure. My optahmologist diagnosed my sjogrens just recently. I certainly hope that your doctor is open minded and can look at all possibilities for you.
Good luck be sure to look around this site.
Leslie

[jaygee]

Hi all and thanks for the welcome and your thoughts.  I have been reading various topics on the board and it's freaking me out, as there are so many things I have read and thought - ok, I have that too.  I am worried I will turn into a hypochondriac!

I am the kind of person who is just too busy to be ill, but the fatigue I have experienced this weekend is awful.  I have honestly never felt this bad.  It's like I have flu or something, only without the sneeze and cough.  I've never felt it this bad before.

I think I have raynaud's too, as my hands are always freezing and the middle fingers go white and sometimes blue, even.   I am going to ask the doctor to do the blood tests for me to see what's happening, and whether I have sjogrens.  And I should also start to use the viscotears again.  I think I try to kid myself that I'm ok, but I'm not.

Recently something else weird happened with my hands.  All the knuckles suddenly were blood red, no surface rash or itch, but they just looked really sore.  No pain, though?  Lasted a couple of hours and then went away.  Weird.... 

[Chickpea]

Hi Jaygee

Good to meet you!  I'm another UKer - in Brighton on the south coast. 

It sounds as though you've been coping with SjS symptoms all by yourself for a long time.  You're definitely not a hypocondriac but just another Sjoggie looking for a definite diagnosis and some treatment. 

I'd echo the others and say 'get yourself a good rheumatologist', preferably one who is recommended by another person with SjS or one who has some expertise in this area.  You can ask here for recommendations if you'd like to.  It would also be good if your GP educated herself about SjS so that she can travel this road with you.

I'm sure you've read on the message boards that there are some good treatments available, particularly Plaquenil which helps most people with the exhaustion, dryness and brain fog.  There's also lots of information here about what to expect from meds, how to cope with side effects, and practical ways of dealing with symptoms particularly dry eyes and mouth.

Let us know how things go this week.  Hope you manage to get some rest - your description of flu symptoms makes me think you've had a flare.

Take care - Chickpea

[jaygee]

hi Chickpea

Yes, a flare up.  I was tested for RA years ago, but I am now thinking it is Sjogrens.

For years (!!!)  I have been taking a sleep in the afternoon for 2 - 4 hours at weekends.  That's not normal is it?  I feel like I never have enough sleep, but I have a busy lifestyle with the horses, dogs and working full time, and always blamed it on that.

Gonna speak to the doctor this week and ask for the tests.

Thank you all for being so welcoming, I will let you know what happens.

J x

[lynnmarie219]

Hi Jaygee!

Welcome to Sjogrens World! I don't have much to add to the wonderful advice you have already received here but I did want to say" Hi" and "Welcome" to you.

I agree that you should mention these symptoms to your doctor and asked to be tested for ss or anything else that he/she feels is needed. The tendinitis issues are a real problem for many of us....in fact that's how I was diagnosed..when I went to my doc about a sore elbow that the pain would not go away! I couldn't convince him as to why I keep getting tendon pain and he ran some blood work and it came back positive for sjogrens...he referred me to a rheumy and the rest is history!

Physical therapy has helped me on more than occasion with tendinitis issues. They have done stretching, massage, exercises, and water therapy and it worked for me!

I hope your GP is open minded enough to help you out with any medications or suggestions to help with your symptoms as there are things that they can give you for the pain and fatigue. Good luck with your appt this week! Let us know how it goes!

[eyeamdry]

Your wrists/hands sound as though they may be carpal tunnel as a couple of people have mentioned.  I had carpal tunnel on one wrist a year before my diagnosis of SJS and the other will probably not bother.  I have all the braces.  Seems I love to collect knee, wrist, ankle braces now in my life. lol.  Wearing braces or splints at night helps alot.  Lucy

[Chickpea]

Hi Jaygee

You mentioned you were going to the GP this week to ask for tests and I wondered how you got on.  Any news? 

Hope your week at work wasn't too exhausting and that you manage to have fun with your horses and dogs this weekend, and don't need to sleep the hours away!

Take care - Chickpea

[jaygee]

hi Chickpea - thank you for remembering & asking 

I only managed to get an appointment for Monday, so have a couple of days to wait.  I will let you know how I get along.