Hello from Canada everyone,
I am 51 yrs old. I still can't spell well but I'll try to spell check as much as possible. And my stories are long. 😊 I have been suffering since my 20's. My doctor blames everything on mental illness, hormones and now the aging process.
After finally getting to see a well known rheumatologist at Toronto General three years ago. she said I may have a connective tissue disease suggestive of sjogrem's but did not have enough markers to give a definite diagnosis, my doctor read the report and told me I do not have sjogrem's, he said I have Fibromyalgia. I don't believe in fibromyalgia. I believe those with fibromyalgia have doctors with an unwillingness to investigate further or the sufferer just does not have enough markers yet it determine which condition they have. Imo. My doctor finally said about two years ago that I have an autoimmune disease but that it's rare and I will likely never be diagnosed. I think he can't be bothered.
He has a new locum doctor working with him. I sat down with her and asked that she read my whole history and tell me where we should go from there. She took my notes and made an appointment for a physical so we could have the time to look at everything. Since then she has made appointments for a gastroenterologist, respirologist, opthimologist and then a rheumatologist. She looked at the Toronto general hospital's rheumatologists report and told me there were only basic tests done. None specific to finding autoimmune conditions.
in the mean time my dry burning eyes that often get a coating I can't clear and feel like I scratched them or got dirt in them and become blurry making it impossible to focus my eye(s) then the emergency tears start and they make seeing even harder now they have become inflamed and the optometrist asked if I have rosacea and if I did I may have ocular rosacea. Now I am on restasis and just finished lotemax and may have to go on long term antibiotics I will try to avoid that! I am also allergic to penicillin. I now have an appointment with a dermatologist. With all the reading I have done of people's stories it seems that unless you end up in hospital with organ involvement or some other serious complications, it's near impossible to get a diagnosis. Again, imo. Yes there are also the fortunate ones that have good doctors and get diagnosed early without complications and then receive early treatment...that's the fortunate part.
I have had no treatment until this last year when I was diagnosed with possible copd and/or adult asthma, my lungs are damaged and I did smoke from 15 to 25. Now I want to investigate to see if it's an autoimmune complication. The test I had can only tell there is a lung problem not what type of damage has been done.
Back in my early twenties I had a lot of knee pain ( both) lasted a few years no idea what caused it. then came intestinal pain and upset as well as excessive fatigue. Over the last 30 ish years the body pain has become widespread every joint and many muscles. I have bathroom issues just like others I've read about I often sit to pee and have to wait until it's good and ready and stil it starts and stops there is also often pain or burning without infection. The weird thing I get is the pain as I pee starts in my shoulders and runs down and out my fingers and for a few seconds it's excruciating.
I have on and off symptoms of the cognitive kind...brain fog, memory and at times I think I had a stroke but didn't. My words get mixed up and I can't write my own name. It's been a few years since that has happened.
I've had many unexplained rashes and was allergy tested I had none of the common allergies. I have plantar fasciitis, tendinitis/tendinosis in my wrists and shoulder and carpal tunnel. I have scalp psoriasis and redness of the nose and cheeks which looks like rosacea. My nose is dry and often burns as I breathe in. My tounge and roof of my mouth always feels like I ate something and burned it, no signs of infection. I often think I'm getting a cavity because of tooth pain but it's always not the case. I brush at least three times a day and the plaque builds up faster then I can brush it off. I sometimes think I'm going to get an ear infection because the pain is so strong but it always goes away on its own. I have intermittent tinnitus it happens a minimum of once a day for a few seconds. I recently had my hearing tested and it's fine
I have periods when my skin and hair are so sensitive it hurts to touch and I start ripping tags out of cloths I have worn for years. I have a sub clinical sluggish thyroid that my dr won't treat so I am getting it treated privately. My vitamins c,b and d are always low I have to supliment with sprays, powder and injections. My iron is not as low so just pills for that. I choke on my food and spit often. it often hurts going down and I make a point to chew well. Pills feel like they are stuck part way down and it scares me.
I panic if I leave the house and I don't have my water with me. I am thirsty all the time and my mouth and throat are always noticeably dry and if I don't have water I get a tickle feeling that starts a coughing fit I can't stop without a drink.
I have vertigo, likely bbvp. I have many headaches some bad enough I'm thinking possible migraines because they make me nauseous. I often get headaches from the neck and shoulder area and I think maybe nasal ones as well.
I take 600 mg of Advil to survive the periods I still get.
I have had pins and needles in my feet, hands, hips, arms and shoulders on and off for years some times severe. I have had mild numbness in my hands, feet, arms and hips most recently the lower portion of my face. Nothing like what I've read about.
I have had shingles, I struggle with a bit of depression on and off. I'm having a bit of trouble with balance only to the right. I have had a few close calls.. I have a pain in my tailbone and have to sit on a cushion the X-rays showed nothing. I get lightheaded and dizzy when horizontal, I believe it's different from the vertical vertigo I get.
I am starting to get weakness in my arms and legs. It's a feeling of having run a marathon or had a vigorous workout only I just walked up the stairs of my house. This is on and off I do work out. On and off more on then off. My right leg is permanently swollen. I had an ultrasound no blood clots.
my skin and lips are always dry my throat is often sore. I have a constant cough and chronic bronchitis. Most of the time I live with a lump in my throat because I can't clear the gunk. The lymph nodes in my neck get sore for no apparent reason and most days when I take my first bite of food or drink and sometimes later in the day as well, that bite causes my glands? Just in front of my ears to lose their minds and it's a few seconds of a strange excruciating sensation.
itch: I do get itchy all over as anyone with dry skin does. On top of the I get a few spots that have and itch that is so deep feeling that I could scratch right through me if I could but self control stops me and it's the same spots over and over. I also get a feeling like I have been jabbed with a large needle. This is random and hits all over my body.
My sensitivity to cold has become a problem. Since I can not longer hold a cold drink or freezie in my hands it makes needing gloves to hold my steering wheel necessary and food shopping or cleaning the freezer an issue. No colour changes. Often my fingers become ice cold when using my mouse or hold my kindle.
I feel like I struggle to get oxygen and I think I yawn more to get it then because of the fatigue.
Some days I need to nap in the afternoon and sometimes when I wake up it feels almost like I'm paralyzed. I just can't move. Everything is so heavy I end up laying there for hours. Other times at night after an hour or more trying to fall Asleep my whole body or one limb jerks so hard it startles me.
As you can see I have had only what the doctors consider mild vague symptoms which I am grateful I have not needed much hospitalization. the doctors just tell me it's in my head.
Thank you for reading my story. It feels good to get it out there. I will continue my search for answers and treatment. I totally relate to those that wonder why they go on. My wonderful husband said recently "I don't know how you have been able to live like this for so long" it was the nicest thing I have heard in a long long time. I keep going because I have a wonderful husband and a beautiful, smart, delightful, imperfect daughter and a very ill mother and four cats and one dog and some great friends. Some days I have to remind myself of that
i think its the the medical profession not believing me and talking to me like I'm stupid that hurts and harms tha most. It affects my self esteem confidence and mental health . It makes me question everything about me and it's my friends that have to talk me down after one of those degrading visits.
Blessed are the cracked: for it is they who let in the light.
may you all find the answers you are looking for
😘