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Rhuematologist thinks I have sjogrens, but I'm only 18 (very scared)
Hi guys. I've been having a crazy time these past few months with my health. I've had so many different symptoms, including a fever for two months straight (still have it now), shin and forearm aches, muscle twitches, headaches in one spot in my head, fatigue, malaise, cold intolerance, everything. I've also experienced this weird pain that wraps around my neck under my jaw before on several occasions (feels like my jawbone or even lymph nodes hurt), some middle back/rib pain, and some blurry/double vision problems (note, the vision issues were NOT severe). I went to a rheumatologist after my primary doctor saw I had a slightly elevated CRP and a low positive ANA. Other things (like platelets) were a little on the high end, but not over. My albumin was also slightly elevated, and I was low in vitamin D. I talked to the rheumatologist, and he asked if I've had dry eyes. I told him no, because I've never noticed my eyes to feel dry except when I wear contacts. He zeroed in on the minor eye issues I mentioned (and ignored the main complaints, which were the aches in the shins and forearms), and sent me to an optometrist who told me I indeed have dry eyes. I was sent for more blood tests looking for things like myasthenia gravis, but I haven't seen the results yet.
I'm so terrified. I did some research online - bad idea - and all I see are stories of people who say sjogrens has ruined their lives and even caused them to drop out of work. Coincidentally, I started noticing some rough feeling patches inside my cheeks around the time I saw the rheumatologist, and now all I can think about his how dry my mouth feels. I think this is just my anxiety though, because I have no problem eating, tasting, or producing spit. I can salivate at will perfectly normally. So I'm thinking this is just an illusion. My cheeks feel a teeny bit sticky to my teeth, but I don't know if you can only have dry cheeks (that sounds impossible), and as I said, it could just be the rough patches. They are colorless, painless, pretty mild. I started chewing gum again recently, and they seemed to have improved somewhat since I stopped.
The main thing that freaks me out is reading all these stories of people with sjogrens complications. Frankly, I would take chronic pain over dry, sticky eyes and a dry, uncomfortable mouth. I have endometriosis, so I'm used to dealing with pain, but this just sounds horrible. I have this awful, sinking feeling that once you get one autoimmune disease, it's only a matter of time before you get other ones. I see all sorts of people on the internet who started out with one thing like sjogrens, and eventually, they have everything from lupus to rheumatoid arthritis. I'm crossing my fingers that this isn't sjogrens but something else instead, especially since dry eyes and dry mouth was NOT what sent me to my doctor in the first place at all - that wasn't even on my radar, especially in light of my other, more noticeable symptoms. My symptoms have fluctuated over time, coming, going, and worsening over the past few months. Some things, like the fatigue and fever, has been consistent, as well as the aches and pains in my arms and legs (but even those have seemed to improve a bit over the past week or so). My primary doctor tried to refer me to an infectious disease specialist, but they said there was no need for me to see them. Frankly, at this point I would prefer cancer to an autoimmune disease. I know it sounds horrible, but it's true. At least you can cure cancer. An autoimmune disease is for life.
I can't be one of those people who only talks about their pain and how even walking up the stairs is a daily battle. I don't want to be one of those depressing stories. I don't want to be a downer to all my friends and family, someone who only identifies as a "fighter" and a "survivor" as their main identity - I have endo, but I don't like to call myself any of those things, because it makes my pain seem more permanent and powerful than I'd like it to be. I'm only 18, and all of my friends treat their bodies horribly and feel absolutely fine. I don't want my life to take a downward spiral when this is the time things are actually supposed to start getting better. I've avoided scheduling a follow up appointment because I don't want to hear bad news.
Please help. I don't know what to do. This has been very depressing and nerve wracking.
I'm so terrified. I did some research online - bad idea - and all I see are stories of people who say sjogrens has ruined their lives and even caused them to drop out of work. Coincidentally, I started noticing some rough feeling patches inside my cheeks around the time I saw the rheumatologist, and now all I can think about his how dry my mouth feels. I think this is just my anxiety though, because I have no problem eating, tasting, or producing spit. I can salivate at will perfectly normally. So I'm thinking this is just an illusion. My cheeks feel a teeny bit sticky to my teeth, but I don't know if you can only have dry cheeks (that sounds impossible), and as I said, it could just be the rough patches. They are colorless, painless, pretty mild. I started chewing gum again recently, and they seemed to have improved somewhat since I stopped.
The main thing that freaks me out is reading all these stories of people with sjogrens complications. Frankly, I would take chronic pain over dry, sticky eyes and a dry, uncomfortable mouth. I have endometriosis, so I'm used to dealing with pain, but this just sounds horrible. I have this awful, sinking feeling that once you get one autoimmune disease, it's only a matter of time before you get other ones. I see all sorts of people on the internet who started out with one thing like sjogrens, and eventually, they have everything from lupus to rheumatoid arthritis. I'm crossing my fingers that this isn't sjogrens but something else instead, especially since dry eyes and dry mouth was NOT what sent me to my doctor in the first place at all - that wasn't even on my radar, especially in light of my other, more noticeable symptoms. My symptoms have fluctuated over time, coming, going, and worsening over the past few months. Some things, like the fatigue and fever, has been consistent, as well as the aches and pains in my arms and legs (but even those have seemed to improve a bit over the past week or so). My primary doctor tried to refer me to an infectious disease specialist, but they said there was no need for me to see them. Frankly, at this point I would prefer cancer to an autoimmune disease. I know it sounds horrible, but it's true. At least you can cure cancer. An autoimmune disease is for life.
I can't be one of those people who only talks about their pain and how even walking up the stairs is a daily battle. I don't want to be one of those depressing stories. I don't want to be a downer to all my friends and family, someone who only identifies as a "fighter" and a "survivor" as their main identity - I have endo, but I don't like to call myself any of those things, because it makes my pain seem more permanent and powerful than I'd like it to be. I'm only 18, and all of my friends treat their bodies horribly and feel absolutely fine. I don't want my life to take a downward spiral when this is the time things are actually supposed to start getting better. I've avoided scheduling a follow up appointment because I don't want to hear bad news.
Please help. I don't know what to do. This has been very depressing and nerve wracking.
Thanks Niko :)
I'm very interested in holistic medicine. It fascinates me - I try to do some reading on my own even. I'm also interested in finding out what's wrong with me though. If no diagnosis can be made, I'm all for letting sleeping dogs lie. But if there's something semi-serious going on, knowing what it is could help me. My primary doctor was pretty worried when I initially went to her. She ran the blood tests and did a quick physical exam for things like swollen lymph nodes (to check for lymphoma, leukemia, etc.). When she didn't see anything initially out of the ordinary, she relaxed quite a bit. I have no real history of diseases in my family. There's prostate cancer and lymphoma on my dads side (grandfather), but my moms side is generally quite healthy.
I actually have a follow up appointment with my rheumatologist in a week. I'm not sure if he's going to push the sjogren's thing any further. I have dry eyes, but this isn't uncommon in my family, and it certainly doesn't feel severe. I don't have problems producing saliva either. My main complaints are not related to dryness whatsoever. But we'll see
I'm very interested in holistic medicine. It fascinates me - I try to do some reading on my own even. I'm also interested in finding out what's wrong with me though. If no diagnosis can be made, I'm all for letting sleeping dogs lie. But if there's something semi-serious going on, knowing what it is could help me. My primary doctor was pretty worried when I initially went to her. She ran the blood tests and did a quick physical exam for things like swollen lymph nodes (to check for lymphoma, leukemia, etc.). When she didn't see anything initially out of the ordinary, she relaxed quite a bit. I have no real history of diseases in my family. There's prostate cancer and lymphoma on my dads side (grandfather), but my moms side is generally quite healthy.
I actually have a follow up appointment with my rheumatologist in a week. I'm not sure if he's going to push the sjogren's thing any further. I have dry eyes, but this isn't uncommon in my family, and it certainly doesn't feel severe. I don't have problems producing saliva either. My main complaints are not related to dryness whatsoever. But we'll see
You may try coconut oil to do "oil pulling", which involves vigorous swishing with 1t of coconut oil for 15-20 minutes each morning before breakfast and then spitting out, followed by thorough rinsing. This will remove billions of bacteria and toxic molecules from your oral cavity.
Coconut oil has anti-viral/parasitic/microbial/fungal properties, making it the top "functional" food.
It works better than many prescription drugs, it converts to energy fast instead of being stored as fat and it is an excellent fuel for the body, multiple times more efficient than carbs, which put an insulin load on the body, contribute to inflammation and help produce small & dense particle
LDL (low density lipoprotein) probably the most damaging molecules in the arteries!
4-6T daily is recommended for therapeutic purposes and 3-4 for maintenance.
It could be used in cooking, added to steamed veggies etc.
I only use organic, virgin coconut oil.
Sublingual D3 drops work well.
I'd say 3000-5000 UI (5 drops) would do it, but it will take a few months to
bring your levels up to where you want.
If you do not experience notable improvement in a few weeks, you may consider searching for a reputable Holistic, Functional Medicine or Naturopathic Doctor, in your area.
BTW, your writing skills are impressive, to say the least.
Best wishes.
Niko
Coconut oil has anti-viral/parasitic/microbial/fungal properties, making it the top "functional" food.
It works better than many prescription drugs, it converts to energy fast instead of being stored as fat and it is an excellent fuel for the body, multiple times more efficient than carbs, which put an insulin load on the body, contribute to inflammation and help produce small & dense particle
LDL (low density lipoprotein) probably the most damaging molecules in the arteries!
4-6T daily is recommended for therapeutic purposes and 3-4 for maintenance.
It could be used in cooking, added to steamed veggies etc.
I only use organic, virgin coconut oil.
Sublingual D3 drops work well.
I'd say 3000-5000 UI (5 drops) would do it, but it will take a few months to
bring your levels up to where you want.
If you do not experience notable improvement in a few weeks, you may consider searching for a reputable Holistic, Functional Medicine or Naturopathic Doctor, in your area.
BTW, your writing skills are impressive, to say the least.
Best wishes.
Niko
Thank you so much Niko. Reading your comment helped me a lot. This has been so stressful for me lately. I feel very alone. I suppose my problems could have an emotional root. I'm going through some personal issues right now... to be honest, I don't recall a time in my life where I've ever been so stressed and depressed. Things have definitely been emotionally draining, and I do believe in adrenal fatigue. The only thing that bothers me is the fact that my fever started right before the school year. I was more relaxed then, but things definitely weren't happy go lucky either. My symptoms started during the summer, when school was on my mind, but definitely not the draining thing it is now. I also was taking some vitamins when these problems first started. I stopped taking my vitamins as of the last month and a half though. To be honest, part of it was laziness, part of it was me being on a rush to get out the door to school. I started taking vitamin D about 3 days ago, and I think it's helping. I've felt better the past week actually.
I'd like to think this isn't sjogrens. Yes, I have dry eyes, but so do all of my family members, and I've worn glasses since second grade (so problems with floaters doesn't seem unusual). I don't notice my dry eyes at all when I have glasses on, only when I wear contacts. Joint pain is not a main complaint of mine at all either. Mostly it's been these deep, dull aches in my shins and forearms (almost along the bone) that don't seem to be remedied by resting, and fatigue. I've had problems with these headaches in one spot and some other weird pains, but it's been pretty come and go at this point.
I THINK I may have dry mouth, but I'm not sure. I definitely feel a sort of sticky friction of my cheeks against my teeth. But I don't think this actually has to do with my saliva. I have no problems eating, speaking, or tasting. I can produce a lot of saliva at will. When I touch the inside of my mouth, it feels moist. It's just that there are these patches on the inside of my cheeks and near the corners of my mouth that feel slightly sand-paper like. Almost like a very light sandpaper, but wet. It's like there's a patch where the mucous membrane of my mouth has deteriorated, and things aren't very slippery and smooth anymore. It has a slightly rusty taste when I rub my tongue against these patches, although there's no discoloration. You can feel it when you rub a finger inside of my cheek, but it's not severe. I don't know what this could be, but I'm hoping it's temporary.
What do you suggest I do next? I'm not well versed in medical tests. I'm actually hoping this whole ordeal was nothing more than a viral infection, because my fever has actually been lower than normal for the past five days. It used to be up to 99.8-100 on a daily basis, and now, there are large chunks of the day where I'm only at 98.0-98.8, and the highest it gets is only between 99.3 and 99.5 for a few hours out of the day (I know it doesn't sound huge, but it's something). I had a similar experience about two weeks ago. For the first time, my fever subsided for two whole days, and I was very happy. But suddenly, I woke up the next day to a fever of 100.5, and it remained like this throughout most of the day. The next few days it was similarly high. So I have a hard time telling what's permanent and what's temporary. I have a good feeling about this time though, since it's been going on for almost a week.
Thanks for any additional insight.
I'd like to think this isn't sjogrens. Yes, I have dry eyes, but so do all of my family members, and I've worn glasses since second grade (so problems with floaters doesn't seem unusual). I don't notice my dry eyes at all when I have glasses on, only when I wear contacts. Joint pain is not a main complaint of mine at all either. Mostly it's been these deep, dull aches in my shins and forearms (almost along the bone) that don't seem to be remedied by resting, and fatigue. I've had problems with these headaches in one spot and some other weird pains, but it's been pretty come and go at this point.
I THINK I may have dry mouth, but I'm not sure. I definitely feel a sort of sticky friction of my cheeks against my teeth. But I don't think this actually has to do with my saliva. I have no problems eating, speaking, or tasting. I can produce a lot of saliva at will. When I touch the inside of my mouth, it feels moist. It's just that there are these patches on the inside of my cheeks and near the corners of my mouth that feel slightly sand-paper like. Almost like a very light sandpaper, but wet. It's like there's a patch where the mucous membrane of my mouth has deteriorated, and things aren't very slippery and smooth anymore. It has a slightly rusty taste when I rub my tongue against these patches, although there's no discoloration. You can feel it when you rub a finger inside of my cheek, but it's not severe. I don't know what this could be, but I'm hoping it's temporary.
What do you suggest I do next? I'm not well versed in medical tests. I'm actually hoping this whole ordeal was nothing more than a viral infection, because my fever has actually been lower than normal for the past five days. It used to be up to 99.8-100 on a daily basis, and now, there are large chunks of the day where I'm only at 98.0-98.8, and the highest it gets is only between 99.3 and 99.5 for a few hours out of the day (I know it doesn't sound huge, but it's something). I had a similar experience about two weeks ago. For the first time, my fever subsided for two whole days, and I was very happy. But suddenly, I woke up the next day to a fever of 100.5, and it remained like this throughout most of the day. The next few days it was similarly high. So I have a hard time telling what's permanent and what's temporary. I have a good feeling about this time though, since it's been going on for almost a week.
Thanks for any additional insight.
Hey Liv,
Your suspected Sjogren's is just ...a suspicion your Rheumie has.
If the strict diagnostic criteria were to be followed, you're not even close.
Just go to Sjögren’s Syndrome Foundation website for details.
For now, you need to rebalance what you know is out of balance, starting with vitamin D3.
Also did you know that deficiency in vitamin D leads to vitamin B12 and B-complex deficiency as low vitamin D can affect the G/I system and its ability to absorb and assimilate certain nutrients and vitamins?
Also your D3 levels (vitamin D 25OH test) should be about 50- 60ng/ml
Memory, and other neurological issues including vision, are directly or indirectly associated with low vitamin D, which by the way affects over 3000 genes!
Stress, anxiety and negative emotions all play against you.
If you continue comparing your situation with your friends', you will lose the battle most of the time, so what you need is a major shift in how you process things in order to benefit, instead of getting beaten down.
Biological and mental stress, can lead to adrenal fatigue, when it remains unresolved.
The good news is that in the worse case scenario, sjogren's or other A/I condition,you're very young and if you do the right things you will get better.
A/I disease is not a life sentence and with the help of a knowledgeable and
experienced holistic health practitioner, you can return to normal health, or at least experience significant improvement, which will allow you to have a normal life.
Unfortunately, there are no A/I specialists (autoimmunologists), so your best option is an experienced & reputable Holistic or Naturopathic doctor.
The areas to investigate are hormonal imbalances (thyroid, adrenals),
underlying infectious conditions, viral load, heavy metal toxicity, nutritional and mineral deficiencies, relevant genetic mutations, neurotransmitter
imbalances.
It usually takes a combination of causative factors for the development of a chronic A/I disease, so it's important to look at it from a wider and deeper perspective.
Please give me your thoughts on this.
Best wishes.
Niko
Your suspected Sjogren's is just ...a suspicion your Rheumie has.
If the strict diagnostic criteria were to be followed, you're not even close.
Just go to Sjögren’s Syndrome Foundation website for details.
For now, you need to rebalance what you know is out of balance, starting with vitamin D3.
Also did you know that deficiency in vitamin D leads to vitamin B12 and B-complex deficiency as low vitamin D can affect the G/I system and its ability to absorb and assimilate certain nutrients and vitamins?
Also your D3 levels (vitamin D 25OH test) should be about 50- 60ng/ml
Memory, and other neurological issues including vision, are directly or indirectly associated with low vitamin D, which by the way affects over 3000 genes!
Stress, anxiety and negative emotions all play against you.
If you continue comparing your situation with your friends', you will lose the battle most of the time, so what you need is a major shift in how you process things in order to benefit, instead of getting beaten down.
Biological and mental stress, can lead to adrenal fatigue, when it remains unresolved.
The good news is that in the worse case scenario, sjogren's or other A/I condition,you're very young and if you do the right things you will get better.
A/I disease is not a life sentence and with the help of a knowledgeable and
experienced holistic health practitioner, you can return to normal health, or at least experience significant improvement, which will allow you to have a normal life.
Unfortunately, there are no A/I specialists (autoimmunologists), so your best option is an experienced & reputable Holistic or Naturopathic doctor.
The areas to investigate are hormonal imbalances (thyroid, adrenals),
underlying infectious conditions, viral load, heavy metal toxicity, nutritional and mineral deficiencies, relevant genetic mutations, neurotransmitter
imbalances.
It usually takes a combination of causative factors for the development of a chronic A/I disease, so it's important to look at it from a wider and deeper perspective.
Please give me your thoughts on this.
Best wishes.
Niko
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