What is Sjogrens Syndrome??
I have not written a personal post for a good while now. To my readers I always appear full of energy, I appear well and happy but this has not been the case for near on a year now.
It all started in November 2018. I had not long moved house. I felt down, I didn’t want to leave the city I had always called home. I was really, really low. Moving house was just the start of things.
My memory was playing up at first. For some reason I felt as though I had baby brain again. I couldn’t remember what I did the day before, and some days I couldn’t even tell you what I had eaten for breakfast! I put this down to stress.
It got worse. I then found I was having difficulty raising my arms, my joints were achy and my Costochondritis was playing up. At this time I was having frequent tummy upsets, I was back and fourth the toilet every hour!
I visited the doctor, he asked “how do you feel on a daily basis?” I was honest, I explained that I actually felt as though I was dying. I was scared I had the ‘C’ word. I had a fever and felt as though I had a permanent cold. One minute I was hot, and the next I would shiver. I was experiencing coldness, deep to the bone.
Along with my symptoms I had numbness in my arms and hands. Having already been tested for carpel tunnel syndrome, this was ruled out immediately. I told the doctor that I frequently lose grip in my hands as they get very cold and turn white. The doctor diagnosed me with Raynaud syndrome, also known as Raynaud’s phenomenon, a medical condition in which spasm of arteries cause episodes of reduced blood flow. He wanted to run some blood tests.
I was suffering from blurred vision which the doctor suggested I have investigated by my optician. The optician said my eyes were very dry.
As I waited for my blood tests results, I found no improvement in my symptoms. They got worse, I would cry each evening in pain and then wake during the night with numbness in my arms. Was I dying!!
Mornings were hard work, I couldn’t even lift myself out of bed, at this point I relied on my husband to lift me up. The kids were often late for school as a result of my inability to function in the morning. I was always tired.
I was also finding it very hard to eat. At meal times I would sip water as the food felt as though it was getting stuck in my throat. My mouth was constantly dry (I couldn’t even spit!)
My bloods came back positive for an autoimmune disease, they said my RA factor was very raised. Finally! I have an explanation to my symptoms but I was still to find out what was wrong with me. I was referred to a rheumatologist.
I saw the rheumatologist a few weeks later. A rheumatologist is an internist or pediatrician who received further training in the diagnosis (detection) and treatment of musculoskeletal disease and systemic autoimmune conditions, commonly referred to as rheumatic diseases.
My rheumatologist diagnosed me with rheumatoid arthritis (RA) and Sjogrens Syndrome (SS). I had heard of RA and kind of expected it, but SS, I had never even heard of it!!
Sjogren’s (SHOW-grins) syndrome is a disorder of your immune system identified by its two most common symptoms — dry eyes and a dry mouth.
- burning, stinging or itchy eyes
- a feeling of grit or sand in your eyes
- sore, red and swollen eyelids
- discomfort when looking at lights
- sticky eyelids when you wake up
- blurred vision
These symptoms may be worse when the air is dry – for example, when you’re somewhere that’s windy, smoky or air conditioned.
- feeling like food gets stuck in your mouth or throat – especially dry food like crackers
- needing to drink water while eating to help you swallow food
- your tongue sticking to the roof of your mouth
- a hoarse voice
- a smooth, red tongue
- a change in how food tastes
- dry, sore and cracked skin at the corners of your lips
- problems such as tooth decay, gum disease, mouth ulcers, and oral thrush – a fungal infection that can cause a raw, red or white tongue
- dry, itchy skin
- severe tiredness and exhaustion
- vaginal dryness in women, which can make sex painful
- rashes (especially after being out in the sun)
- a dry cough that doesn’t go away
- swelling between the jaw and ears (swollen salivary glands)
- muscle pain
- joint pain, stiffness and swelling
- difficulty concentrating, remembering and reasoning
The rheumatologist started me on some medication. Hydroxychloroquine is a Disease-modifying anti-rheumatic drug (DMARDs) these work by blocking the effects of the chemicals released when your immune system attacks your joints or other organs.
I was referred to a physiotherapist who advised me on some exercises to help with my mobility issues. I also received some steroid injections to my shoulders.
Its now been a few months since I started the medication (so far, I have had no side effects) and new exercise routine. I am feeling a little better, still have my on and off cold spells, and my raynaurds is still an issue. With exercise I have been able to build some muscle on my shoulders which I had lost. My fatigue comes and goes. My tummy troubles are gone but I am still experiencing pain and I can not over do it. I have good and bad days.
I do hope things will get better but only time will tell.