Possible Sjogrens

[mysteriousmillie]

Hi

I have been experiencing symptoms for a while now - I have recently seen a new doctor who thinks I may have SS & am waiting an appointment with a Rheumatologist, I am from Uk,  female & 46 years.

I had Glandular Fever (mono) aged 38.  2 1/2 yrs ago I got Lymes Disease & was prescribed Doxycycline  for 14 days. Symptoms:

Dry mouth for 2 years - mouth is like a piece of rock in the mornings, surface of tongue is cracked & occasionally bleeds - I have to have fluid before I event attempt to eat otherwise I have difficulty swallowing.  I also take water to bed to sip through the night.  I have regular mouth ulcers & blisters on the tongue.  I can no longer eat spicy food because the pain is unbearable & has left me in tears on occasions.  Doctor has prescribed me artificial saliva which helps for a short time. At times I find it difficult to talk as mouth is so dry. On 2 or 3 occasions during the last 18 months the bit at the bottom of my under tongue (just before it touches the gums) have swollen up & stayed that way for a few days.

Not sure I have dry eye, but I do feel like there's something in them & when I try to dig it out there's gungy stringy stuff, eyes feel tired, sore & itchy, but they also water & I can still cry.  They have been like this for probably 4 or 5 years now.

Cognitive impairment - short term memory is shocking.  I struggle to get words out, it?s like they are on the tip of my tongue but not even my brain knows the word & I have to just sit & stare until the words come back  I would say this started 18 months to 2 years ago.  I can become quite emotional as Even though I am on antidepressants.

Fatigue-  was totally exhausted & drained during my GFr episode & had to take 2 1/2 months off work.  Then it came back when I had Lyme's Disease & I remember sleeping 10 hours a day for a week.  But I feel it?s getting worse now & affecting my life - I avoid social events because I am just too tired, I spend all day working out what time I can go to sleep, can I have a day in bed etc - I used to love exercising - but now the walk to work wipes me out.  I have a few times practically fallen asleep at work.

Tremors - my fingers tremor they have a life of their own, on bad days it affects writing & painting my nails.  Had this for 6 months approx.

Tinnitus ?For 1 year.

Dry skin ? Had quite a large patch of eczema recently - lasted 5 months around my neck & down to my chest.  I treated it with steroid cream & emollient but it took a long time to clear up.  In the last week I have noticed that the skin on my finger knuckles is very dry & one of them the skin has split - I use handcream after I wash my hands & again at night before bed.

Dizziness - for the last 6-8 weeks I have been experiencing dizziness & feeling like I am going to pass out -mainly when I get up but not always straight away - I have to stand still & hold onto something & just close my eyes until it passes, if I open my eyes everything is blurry & fuzzed out & I feel sick.

Cough - I have a persistent hacking cough for about 1 year, my old doctor said it was my asthma playing up & would prescribed steroids which would help but then after a while it would come back. I also get a hoarseness about my voice that comes & goes.

Pain - I have degenerative spinal disease so I am in pain with my back in anycase but I will regularly get shooting pains in my hands & legs.  My elbows are very sore to touch & have been like that for about 4 years - I am told its golfers elbow, occasionally they fill with & during these times they are red & hot to touch then the fluid goes & they are just back to sore to touch.

Swelling - last year I noticed a swelling at the point where ear & jaw meet, it lasted 10 days, but if I touch that area it feels a little harder than the other side & makes me feel weird at the back of my throat (left side) not experienced this on right side.  The glands in my neck (at the point where it starts to become the chin) are regularly swelling & aching - but have been since my GF days).  A lymph node in my neck & behind my ear is permanently swollen (not a lot, but both will swell more if I am under the weather with cold or flu).  I noticed the right side of my tongue was swollen & twice the right side of my face has swollen for no reason - both times swelled quite quickly & last for about a week.

Tests - I have had blood tests, liver, kidney, thyroid, FBC are all normal.  It?s shown that I am pre-diabetic.  & my white cells were elevated (Eosinophils I think) which was indicative of allergies - which I do have - but I have no idea if these play a role in SS.  I am waiting for the results of ANA, CRP, RF which I should get next week.

I don't know if any of these symptoms sounds familiar to those with SS - a friend told me that there might be a connection between GF, Lymes & SS.  But I thought I would post here while waiting for appointment

Thanks.

[mysteriousmillie]

I knew I'd forget something LOL!!  I get very cold hands and feet then all of a sudden, I will go hot and feel like I have a fever then it disappears - I also get night sweats that are steadily getting worse - it seems my torso gets over heated whilst my hands and feet stay cold - I guess that could be the start of the menopause though.

[mysteriousmillie]

Something else I forgot - this is quite recent _5-6 weeks - numbness and tingling in my right hand - little finger and that side of the hand down to the wrist.

[Joe S.]

welcome. Your doctor is the only one that can tell you that you have Sjogren's. It typically takes 7 years for them to tell you. My Neuro slipped up and said he was checking me for nerve interactions related to Sjogren's 5 years before it was official.

While I think you may have Sjorgrens, you may have other health challenges that complicate getting a diagnosis, like diabetes. Your fatigue and cognitive challenges are typical of all autoimmune diseases. Your hand and feet issues could also be something else like diabetes, or Raynauld's.

Most of us find we have multiple health challenges. You can see that in our signatures.

[SunshineDaydream]

Welcome to the forum, Millie. Sounds like you definitely have something(s) going on, possibly Sjogren's. I hope your doctor included test for SSA and SSB in your latest labs. If not, ask about it at the next opportunity.

Also, antidepressants can cause dry mouth, eyes and skin, so consider whether any of your dryness symptoms (or exacerbation of them) coincide with when you started taking antidepressants.

I hope you and your doctors figure out what is going on and find effective treatment soon. Don't give up!

In the meantime, here's a list of helpful items. I'm not sure how many you'll be able to find in the UK, but maybe you can find equivalents. https://sjogrensworld.org/index.php?topic=10139.0

[mysteriousmillie]

Thank you both for your replies.  The dry mouth, eyes and skin all happened long before I started taking the antidepressants - everything I've listed started happened after glandular fever and Lymes.

I am not sure if she asked for SSA and SSB but when the results are back and I talk to her I will definitely ask about those two.

The doctor has said that I am pre diabetic, but do not have full blown type 2 diabetes, she says that this can be reversed through diet and exercise.  I have joined Slimming World and will persevere with the walking to work and  back again (1 hour).  So I am very hopeful that I can reverse the pre-diabetes diagnosis.

Thanks for the advice.