Good bye 2016, Hello! 2017: 2016 has been a bit of... - LUPUS UK

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Good bye 2016, Hello! 2017


2016 has been a bit of a flop for me but with a few flips :)

Still no answers surrounding all my symptoms oddities and still no appt for ENT; Neurologist or Dermatologist who specializes with immunology.

Feeling positive about 2017. I have decided to leave my current GP and go find myself a new one.

*Sigh* but it is still exasperating.

The best things this year for me is, finding this forum, discovering the beautiful benefits of Prednisone and having the opportunity to meet a wonderful walk in Dr that truly cares about people and takes their health seriously (too bad he is halfway across the country).

Auto immune is a tricky dicky and has definitely shown it's true colours to me this year. I am hoping that the new year will give me the strength to discover what's brewing inside me so that I can let my true colours shine and plan my days ahead of me with open arms: a smile on my face and the energetic to help empower of all those I encounter.

Not counting the days but I am counting on the new year for new positivities :)


9 Replies

Wishing you well, 2017 just around the corner and new positives are a good way to start.....still getting my head around it all too....ML

I hear you! 2016 was a horrible year for me. I am still trying to figure out all of my symptoms and finding the right dr who can help.

What are your symptoms?


in reply to LKVVZ

Ack! Where do I begin! Lol

Headaches,both mild and severe, daily

Pressure in my head (like bruise)

Twitching of facial muscles

Leg and hand tremors

Stiff, painful neck

Jaw pain

Dental problems (lost three teeth in three years, very very dry mouth)

Sore throat

Random runny nose

Constant phlegm (mostly clear and bright neon)

Fuzzy vision, vision changes occasionally

Floating white and black spots in vision

Pain in and around my eyes

Plugged ears (feels)

Muffled hearing (hearing test rated perfect?)

Sensitivity to lights (ESPECIALLY led)

Excruciating pain in ears, mostly left, occasionally right and seldomly both simultaneously

Ringing in both ears

Diarrhea (almost 6 months non stop)

Upset stomach, really bad acid reflux

Bones and joints randomly ache


Stiffness of joints (very mild) on most of body


Shortness of breath (sometimes I feel like I can't enough air, shallow breathing)

Chest pain

Temperature - hot and sweaty to freezing cold, nothing warms me up

Dizzy spells

Loss of balance

Gait gets off sometimes. Funny though, I'll be walking then next thing you know I'm veering off to the left or right haphazardly lol

Heart palpitations

Tremors (hand, leg)

Burning and stabbing sensations throughout the body

Pins and needles!

Feeling like I got punched in my back by the bra line (both left and right side)

Motion sickness


Mood swings! (But I have been diagnosed with Cyclothymia)


Feeling like I am losing my mind

Hard time falling asleep (I use to be able to hit the pillow and lights out for 12 hours or more)

Panic attacks

Memory loss! Oh the memory loss

Easily confused (I use to be EXTREMELY witty and very very with it)

Hard time concentration (cannot have ANY distractions)

Slowed and slurred speech

Cannot find the right words to use in a common or complicated sentence (which is terrible! I use to write and had an extensive vocabulary)

Stammering speech

Forgetting how to perform simple task....How do you turn your car lights on again?)

Phantom smells

Extreme fatigue, lethargic

Continual infections (feels like I'm antibiotics every 5-8 weeks, ugh)

Aching feet

Fatigue after about 30 mins after eating and immediately after a focused conversation

Very dry skin

Mottled skin, I feel like a walking blue bee hive

Hair loss and lesions on face (but that's my Discoid)

Low WBC, platelet, b12 a few others (can't remember)

There are more (just can't recall at the moment, this list is one I have made and copied here).

Almost all these symptoms come and go,wax and wane. Muscles/tendons? Feel twangy if that makes sense.

Anyway, there they are :)

in reply to Lara4228

Gosh I wonder how we get on sometimes. Mine are still unresolved too.

Ive been sick for the past 6 months. Every single month without fail I get struck with SOME sort of infection. Chills, fever, sore throat, severe body aches.

It varies in severity. Some months its just a head cold and other days i am i bed for 4 days or in the ER on a drip.

CRP (inflammation marker) is always high even when i am feeling some what normal.

I also have a sun allergy - when exposed i get a horrible red itchy rash!

I guess the next stop for me is an infectious disease specialist and my haematologist. I hope its not cancer :(

in reply to LKVVZ


I'm not a Dr but I do not think it is cancer. I too have the sun sensitivity.

Dermatologist has put me on cycling Prednisone and it has reduced many of the symptoms...While I am on a dose of 15mg or more :( tomorrow I lower my dose to 10 mg a day. It's amazing how I feel the difference as I decrease my pills and taper off.

When on them I have so so so so so much energy! Literally, for me, it's like...Quick! Get everything done around the house NOW before the energy depletes with tapering off the meds!

Like tonight for example, I actually put new curtain rods up (dual rod system at that) and hung 8 panels! Without the meds, well my front window sat bare for over a year. Just couldn't do it. Zero energy and constant nagging aches/pains.

Been tested for SALE (blood work only) and I'm clear (amen). Been tested for Lyme a, clear again. Next step...MS... Hopefully 2017 will have some answers and an attack plan for me so I can get back to living! :)


in reply to Lara4228

Hi Lara,

You poor thing! So you havent been diagnosed yet?

in reply to LKVVZ

Not entirely! Hoping 2017 will bring me some answers :)

I've had Lupus a# of years.New issues keep popping up.Frustrated.I keep praying.Be careful with prednisone.I won't take any more.I'll will be praying for you.

I found yet another swollen and somewhat painful gland under my arm last night. So now it's in my neck and underarm. Freakish out.

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