Posted , 6 users are following.
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
😘
1 like, 12 replies
tj268 Strikerlm
Posted
Hello Strikerlm, wow! I am so sorry for all your suffering!!!! I am not a dr just a big fan of this site. It sounds like you have a lot going on similar to myself and others here. From what I have learned imho, autoimmune diseases are tricky and mask and mimic other diseases. I would insist on blood tests for sjorgren's and others and see if you can get an MRI and if you are pretty sure it's SS, get a lip biopsy. People and drs vary their opinion on those. It sounds like possible Reynard's for the cold extremeties, possible arthritis, ms, or SS. It tkaes a longgggg time to get a dx from most drs but finding a good one is key! Personally I don't think it sounds like it's in your head and being stubborn and vigilant is they way to go. I do not know how your healthcare works there but please push for the tests. Even if negative you can be what I think is called seronegative where you have it but it doesn't show on tests. Stay strong and come here anytime. I'm sure you will be getting more responses soon!
Sunsetstuff Strikerlm
Posted
Holy cow, you sound like my exact twin- except for I've never had shingles and I have to nap EVERYDAY- Since I was young - teens...? I'm now 56 and was diagnosed with Sjogrens however have had all those same symptoms for as long as I can remember.... I've had doctors suggest it may be psychiatric - so I went through all that process... ends up I'm clinically mentally healthy...as a matter of fact, I ended up counseling the counselors! I've been told by a real medical clinic to 'pray' (thank you very much but I don't go to the medical doctor for spiritual advice...) I seem to be getting worse, especially lung involvement. You know, I've figured out a lot of stuff throughout the years to make myself better, but frankly, I have to lay down for awhile.. I'd like to talk with you more this weekend! 😎
Megheart Strikerlm
Posted
Hello Strikerlm,
You sound like my twin also in most of the symptoms you outlined.....even down to losing balance to one side only....yours to the right.....mine to the left.....my very supportive husband suggests that must be the way we lean politically - lol!
I don't have Reynauds nor have I ever had Shingles to date. The Reynauds can be related to autoimmune conditions but the Shingles is possibly a random event which people get, horrible as it is.
No-one can make up all those parallel symptoms unless one has carefully trawled through numerous posts or websites for a particular medical condition and convinced oneself that they have all those symptoms or they have actually experienced all those symptoms. So I think your doctors have been lazy (same story) and put you either in the 'too hard basket' or the 'psycho basket'. This story is repeated over and over for us because we are complex and the average GP does not really know what to do with it all, it seems. Even Rheumatologists and Neurologists can be sceptical when tests come back negative. They want objective data in the form of abnormal test results to back up the symptoms (subjective) that the patients is claiming.
A couple of things. Have you tried chewing gum to help your dry mouth, especially when you are say driving and it is harder to sip fluids?
Have you had Sjögrens specific blood tests done like ANA's and anti Ro's and anti La's etc? It is possible that you are seronegative but eventually many sufferers do become positive. It took nine years for me to show positive after I first got ill. Hopefully one day they'll get a more sure-fire test for us.
Megan
Sweetness Strikerlm
Posted
Wow! You have so much going and to think that you are in Canada with all good doctors . Some doctors will make you feel that you are crazy the majority of them don't want to hear. Don't ever give up try to eat healthy and exercise it helps a lot . I feel like you sometimes. Get some blood work done it's very hard to diagnose Sjogren's some doctors don't even know what it is . It took me a very long time to be diagnose d . Insist in getting all the test done before it's too late . Sjogren's in some case affects internal organs so don't wait any longer . Sjogren's is an overactive inmune systems that attack itself . I found that when I take vitamins it makes me feel worst . Font ever give up my friend !!!😁
Strikerlm
Posted
Good morning,
Thank you tj268, Sunsetstuff, Megheart, and Sweetness,
Tj268 ty for you kind words.
Sunsetstuff, I would love to hear what you do to look after yourself. I look forward to chatting more with you as well.
Megheart, I'm not sure I have reynauds either. My fingers never turn all those wonderful colours. They are just becoming more and more sensitive to the cold.
Your right shingles is probably an unrelated event. The only reason I mentioned it is because the researchers are saying the onset could be due to environmental or virus etc... and wondered how many sufferers have had them.
I use mints when I can't get water. I'm not a gum chewer and I understand that mints are not the best because of the sugar but I won't ingest most sugar substitutes. I'm having a hard time being confident as to which replacements are really ok to use. My teeth have been stable for many years now...after many years of dental problems.
I have not had any tests specific to autoimmune antibodies. I have had a couple inflammation markers tested. The CRP has on occasion been slightly elevated. I have no evidence of RA just the pain. Oh wait. I did have an ana and it was 1:180 which my doctor said many healthy people have....hello! I'm not healthy
I'm on a mission to get tested but it's amazing how easy doctors can refuse to do the tests and dismiss me.
Thank you Sweetness, I try to eat healthy. I have oatmeal with added healthy ingredients, I choose anti inflammatory foods and spices. I drink green tea, I have cut out many foods that are pre packaged. I'm mostly gluten free. I am definitely very sensitive to it. I had a blood test to see if I'm Cieliac like my brother. It came back negative. I have tried to find evidence to see if that test is very accurate. Have not got my answer yet. I understand cieliacs must have no gluten so I sure hope I'm not one. It's hard enough trying to keep it out of my diet. It is a sneaky ingredient.
I have exercised for years. I go to a private instructor that teaches a small class of older adults and she knows all our injuries and works to make us stronger and more flexible. She even works to improve my balance . I'm still over weight. That seems to be impossible to change. I read about the possible symptoms of conditions and medications on my quest to find my answers and I have to laugh at myself every time it says may cause weight loss and it's never me . Lol.
Thanks for your time. I hope I answered everyone 😊
Sunsetstuff Strikerlm
Posted
Hi again! Even if you get definitively diagnosed...it still seems you're on your own...they treat symptoms only. I was seronegative and I just about had to beg for lip biopsy, which fortunately came back positive, otherwise my doctor would have done nothing. I take Plaquenil which is a long term med for Sjogrens. It took about 7 months to work and the changes were very subtle. Ok...now for things you can do to improve your quality of life: I cut out gluten, sugar and dairy. This reduces my itching, mouth sores and burning, fatigue, inflammation, bloating. If I cheat on the gluten or sugar, I feel awful. If I cheat with the dairy, not so bad but I don't push it. Our Antibodies go crazy with this stuff and we want to calm them down. Fresh, organic, non-processed foods are great and you'll get used to it. You may feel sick for a couple weeks while your body rids itself, but one morning you'll wake up feeling good!Dryness: coconut oil! I put a 1/2 teaspoon in my coffee or tea it helps moisturizer throat and mouth. I take coconut oil, mix with local honey and peppermint oil- put on scalp, either for the whole day, wash at night; or all night then wash in morning. Use coconut oil on your body for dry skin. I don't put on face, break out. Sip water all day. Gum sweetened with xylitol. Regular dental Appts and take very good care of teeth- water floss and rub down all your teeth with a wash cloth and a dollop of coconut oil after brushing. Exercise: I used to run 2-3 miles every other day- now impossible. On good days, I find I can walk up to 1.75 miles without it knocking me out. I discovered yoga is an absolute life saver! Read about it and you'll see what I mean. It not only helps physically, but mentally. My teacher advises that if yoga can't cure you, it will help you to endure your pains and challenges- and it does! Well, I have more, but this is enough for now! Hope it gives you some ideas! Have a great weekend! Ps: watch funny movies and read funny jokes- stay optimistic and remember a lot of people are a lot more sick than we are!
Sunsetstuff Strikerlm
Posted
Hahaha! No matter what medicine or illness I ever have - I never get the 'weight loss' side effect either!
tj268 Strikerlm
Posted
aitarg35939 Strikerlm
Posted
Hi Striker
I had shingles, before I was 40 but i think it was brought on by 2 years of extreme stress following a life-altering accident, plus perhaps orthopedist's injections of vast amounts of steroids into an injured joint. 1 in 3 adults get shingles, and SS folks aren't numerous enough to factor in that percentage. Unfortunately, unlike the chicken pox which sets us up for shingles, we can get shingles more than once. I've gotten the vaccine, not wanting to ever get that again.
Are any of your chronic itchy spots near where there was nerve involvement from shingles? The one very minor itchy spots, out of 3, fits that bill. It never drives me crazy like the others do so I don't treat it. For the other 2 I use tea tree oil or salve. I got one of them to clear up for years. The other spot is new
For the whole body itchiness, which with me is itchiness strong enough to break through the plain clarinex I take daily, I have to take a benadryl or 2. A non-ss friend who also gets this uses something else or else she coats herself in caladryl. She's 97 and has no illness, takes no meds. She does have dry skin. The explanation that makes the most sense to both of us is this: on an itchy day before we know that's what it is, we eat a food to which we are not allergic, but on that day there's something in the air which, when combined with whatever the food was, causes us to have whole body hives/itchiness. In addition to that, I'm much more sensitive to touching plants. I'm not allergic to anything in my yard but I now must be completely covered when doing anything out there.
Lungs: I smoked a long time & am glad that I enjoyed it. I have COPD and now also have bronchiectasis. With a long smoking history, anyone who doesn't get COPD needs to be grateful on a daily basis. When smokers tell doctors that those cigarettes had nothing to do with their lung problems, it is not unreasonable for said doctors to blow us off -- unless we proceed to inform doc of our 30 years around asbestos, insulation or other dangerous substances.
Celiac test: I've never heard of it not being accurate but there's probably a celiac info page on this site. You might want to check there.
Xylitol is considered to be the one tooth-friendly sugar substitute. I'm not sure about stevia & erythritol, which is a natural substance.
Although green tea extract helps some SS folk, drinking the tea is a double-whammy of astringency from the caffeine and the tannins.
Johns Hopkins in Baltimore does a lot of SS research. If there isn't a Sjogren's-friendly med school in Canada, you might want to try there..
Strikerlm
Posted
Good morning,
thanks for the replys. I'll try to find something I like with xylitol as the sweetener. I just bought coconut oil from Costco last week for my skin. I love it. Not only to moisturizer but also because my sense of smell has become so sensitive I can smell the chlorine on my skin after I shower. Coconut oil smells much nicer. I now smell things that I think are actually non existent. Like cigarettes or other burning smells and other things that I guess I should write down since I can't think of any . I have been afraid to try coconut oil on my scalp because of wondering if I can wash off my hair. Well you gave me the courage to try. It's in my hair and on my scalp 😊. I will try coconut oil in my morning drink and see if it helps. Ty.
I do enjoy joy yoga as a form of exercise but it's very expensive compared to other exercise programs so I only buy a package of classes when I can get a deal thru wagjag or Groupon .
I love The Big Bang Theroy and Who's line is it anyway 😂
I was just reminded My taste buds are on again off again. I become too sensitive to salt or spices.
The itcy spots are not near my spot I had shingles, that was on my back. My main spots are forarms, palms, bottom of feet, and external girl parts. I also get mild itchiness almost everyday on my chest and chin. I will try tea tree oil and/or salve.
You are absolutely right. Copd is often the result of smoking and I can accept that if that's my case. However it is rare to get after smoking moderately for ten years and then develop 20 years later. So I will try my best when I see the repirologyst this week to open his eyes to the possibility of a autoimmune complication.
Thanks for the research idea. Much appreciated
Time to start my day. I look forward to more conversation and sharing ideas.
aitarg35939 Strikerlm
Posted
Xylitol is the sweetener in the Spry line of gum, mints, toothpaste & mouthwash. People often chew the gum for 5 minutes just after eating during that 30 wait before brushing as they say it helps our teeth most then. It isn't quite like other gums in quantity or texture, and equals a half-piece of regular gum in volume once it's in your mouth. I wish Costco carried it.
In North America, 1/4th of COPD cases are in people who NEVER smoked. Right now in the COPD forum here there's a discussion started by someone asking if she is the only one who never smoked but has COPD. She definitely isn't alone.
Strikerlm
Posted
I will try that line of products. I look forward to following the copd forum.
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