Hello everyone,
I don't have an actual diagnosis yet but my symptoms point to sjogren's.
All my symptoms started in March of this year, I got a bad case of the flu and strep throat the end of February. I haven't felt well since. I'm exhausted everyday.
Long story short after 2 courses of antibiotics and steroids my tongue turned white & dry with a horrible metallic taste.
I immediately called the Dr and told her I had thrush, I went in that day and she agreed. I was on antifungals for 2 months with no improvement before ENT referred me to an oral surgeon.
He cultured it and surprisingly it wasn't yeast. He said with all my symptoms, which are fatigue. Joint pain, dry mouth & throat he suspected sjogren's. He referred me to rheumatology that day and ordered specific bloodwork.
Bloodwork for sjogren's was negative but he still did the salivary flow test and the schirmer's test. I wear contacts and assumed my dry eyes were normal but apparently not. I had a 0 in my left eye and 7 in the right. I also showed reduced saliva flow but can't remember the numbers.
I've had my first visit with the rheumatologist and after I told her my story she said possibilities were post viral fibromyalgia or sjogren's. She ordered more bloodwork and also the early sjogren's test. I'm not sure how dry mouth, throat, sinuses and eyes relates to fibromyalgia though.
I've been dealing with all these issues plus more for months. I'm tired physically and mentally. I'm scared of the future and scared meds won't help. I feel like a zombie everyday. I cry because I don't know what's going on with my body. Yesterday I had my first meltdown.
I cried like a child asking God why me?? This is scary and I'm wondering if i'll ever feel better again.
My worst symptoms are the fatigue, dry mouth, throat, nose. I also have severe heartburn. I'm impatiently waiting for my appointment on Thursday
After being on this site the past week I decided to ask the rheumatologist if she would consider treating symptoms if the bloodwork is still negative and she said we can consider treatment even with negative bloodwork.
I'm hopeful but still scared, I know meds take a while to kick in but can my symptoms improve on there own? Especially this fatigue. All I do is lay in bed. Or could this be something else? Im terrified it's chronic fatigue syndrome or fibromyalgia..
Suggestions or advice much appreciated. Thank you!
Welcome to the form. I suggest that you find a copy of "Spoon Theory" and read it to understand your ups and downs with this disease. The book "Feeling Good" by David Burns has exercises that will help with anxiety and depression. You can look at our signatures to see what some of us are taking.
There are other tips that we have and someone else may provide them. If not you can pm me.
Hello MCE, I'm very sorry you're feeling so fed up with this.
My symptoms also really got going after a bad case of flu in early 2105, though I'd had a couple of episodes of dry eye before that, which I'd successfully treated with flax oil. Anyway all heck broke loose in early 2015, I had rashes, labyrinthitis, fatigue, weight loss, dry mouth, nose, eyes, etc. All tests for Sjogrens were negative, I had them done twice. Since then I've had skin and bladder issues.
I would say what really helped me most was treating the symptoms. Ask your doctor about eye drops, ways to increase saliva (I find chewing gum very helpful, also Xylimelts at night), if your nose is dry you can try something like Ayr spray, use good moisturisers on your skin, and so on. You can look up particular issues on this site, I've found it incredibly helpful. Don't despair, things can get more comfortable, and there are new medical breakthroughs all the time, so we all live in hope on this forum. :)
Hello MCE,
A Schirmer's of 0 is really frightening. It worried me that you didn't say you were doing anything for that. If you're not, you really have to find some lubricating eyedrops that you like and use them regularly (several times a day). I like Retaine MGD, Soothe, and Refresh Plus. And you should see an ophthalmologist, who will probably put you on Restasis.
Rheumatologists do diagnose and treat people who are seronegative, based on symptoms, exams, and whatever else (other bloodwork, x-rays, etc). I'm seronegative myself. (RA, PsA, Sjogren's)
Yes, your symptoms could improve on their own. It sounds like you're in a flare and hopefully it will cool down and you'll feel better. You have to stop stressing (I know that seems impossible but you can do it!), take the best care of yourself that you can, and keep after the rheumatologist.
I hope you have some relief soon. You got on this quickly, that's very good and increases your chance of remission. Good luck!
Thank you Joe. I will look into that book.
Araminta: Our stories do sound very similar. I didn't mention I've lost over 40 pounds due to the heartburn and loss of appetite.
I also developed symptoms of Interstitial cystitis. Not confirmed but I get uti symptoms every month for atleast a week. Do you take any prescription meds for your symptoms? How do you manage the fatigue?
Polly: I will definitely get some drops!!! Thank you
Polly I forgot to ask. Do you take any prescription medications for your symptoms? With you having negative bloodwork was it difficult to get treatment?
I'm nervous about that even though the rheumatologist already said treatment is possible. I guess I'm just overly anxious. Thank you
Hi MCE
Sorry to hear what you are going through.
Let's approach this objectively.
1. Did you get rps inflammadry test done for your eyes? What's the score?
2. Did you get ocular stain score using lissamine? What's the score?
3. What's your unstimulated whole salivary flowrate at 7am and 1130am? You can do this at home. Just Google and you will find how.
4. What is your ana, esr and crp score?
5. What is your hepatitis c result?
6. Check anti ccp and anti centromere score?
Update once you have these results.
Note:
You should not use preservatives based eye drops more than 3 times day. Else that itself will cause Inflammation in the eye. Eye gels use milder preservatives, that can be used rather than eyedrops. If you can get preservatives-free eye drops they can be used as often as you want.
Your white tongue is most likely caused by your antibiotic course. To fix it drink probiotic drink(e.g yakult) twice a day for one month. Brush your teeth after every meal. Use alcohol free mouthwash before bed. Avoid sugary food and drinks for a month and check for improvements.
All the best.
MCE, in reply to your questions, no I don't take any prescription drugs for the symptoms, apart from the eye drops (Hyloforte and Lacrilube). With regard to the fatigue, I would say that is the hardest thing to deal with, and I think you need to modify your life to some extent to take account of it. Are there any chores that could be done by someone else? Could you get to bed earlier, and take some rest periods during the day? If you're working, could you make any changes there that would make it less tiring? By the way, I found the first year of symptoms was the worst.
As Polly says, you need to find ways to keep calm, as panicking makes everything worse, it can intensify physical symptoms and even create new ones. I find meditation and mindfulness very helpful, some forum members also find antidepressants useful.
I know I could pursue my case further by insisting on the salivery gland biopsy, however I haven't yet done that for a couple of reasons. Firstly, because all my other tests have been negative, I'm afraid I'll put myself through that discomfort and then get another negative, but still be left with the symptoms, and a few less salivary glands! Secondly, when I research the medication that might be offered to me if I have a positive result, I am put off by the possible side effects, in particular the risk of eyesight problems. So at present I'd rather plod on, treating symptoms, trying not to overdo things as much as possible. But that's just my take on it, others have different views.
MCE, I was first diagnosed with RA and I had ALL the treatments. The usual course of action, as far as I know (with RA at least), is to treat aggressively quickly. You have the best chance of remission that way. Unfortunately, nothing kept working for me. My first biologic was Enbrel and it was a miracle for a few months and then it stopped. But I had the disease for a long time before I was diagnosed. I think you've got a great chance!
Do get the preservative free individual vials of lubricant eye drops (as happylife says). And don't forget to blink! I remember when I was first told I had dry eyes, the doctor told me to blink. He said "go 1, 2, 3, blink, 1, 2, 3, blink until it becomes a habit". (So you keep spreading the moisture and don't develop dry spots on your eyes)
Keep calm, try not to be anxious. You'll get through this!
Also get a test for Lyme disease through Igenex Lab .. just to be sure. My SJS followed Lyme.
It is possible it's chronic fatigue syndrome/myalgic encephalomyelitis (ME), but that is something your doctor will have to diagnose. I suspect that fibromyalgia is extremely common among sufferers of both ME and Autoimmune Diseases (AI)- probably goes along with all the inflammation. Don't be surprised or disheartened if you are told you have fibromyalgia.
I went through 9 months of extreme torment with ME in the mid 1980's - such a crazy and debilitating disease - the joint pain, sore throat, sore ears, fatigue etc. I did get over the worst but never felt the same. However my Sjogren's symptoms of dryness, Raynaud's phenomenon and muscle problems etc. predated the ME. They were milder back then and I didn't recognize that the were part of a disease process. I changed allergists near the end of that 9 months and he tested me for Epstein Barr Virus (EBV)- my immuglobulin response showed that I had recently been infected. Were you tested for EBV or other viruses? I don't think they have any definitive blood test ME.
Currently I use Restasis, Synthyroid, B12 and preservative free individual vials of lubricant eye drops. I was on Plaquenil for many years and stopped it last year. I have taken other prescription medication when other AI diseases have cropped up - short term to nip things in the bud. 10 years ago I read a book that changed my life - The China Study: The Most Comprehensive Study of Nutrition Ever Conducted And the Startling Implications for Diet, Weight Loss, And Long-term Health by T. Colin Campbell and Thomas M. Campbell II. From there I found Dr. John McDougall's website and all the information about his diet (its all free so you don't have to read any of his books). There are many variations of a whole food diet - some focus on heart disease (Dr. Caldwell B. Esselstyn), Diabetes (Dr. Neal Barnard). Eating this way has limited my inflammation. Without the swelling my joints don't hurt, my neuropathy isn't painful and burning etc. But it's not a cure for AI - I've still developed more - it just tamps things down so I feel better and can do more, have more energy. My fibromyalgia is completely in remission - except during the holidays when I cheated - it came roaring back.
I mention diet because I think it's so important - but also because you complained about severe heartburn. That is usually diet (but can also be medication and supplement related) - are you eating gluten? I have Celiac's that was diagnosed later in life - I had severe heartburn unrelieved by all the prescription medications my Dr. could throw at me. Removing gluten resolved heartburn. Not everyone has Celiac's or sensitivity to gluten - but it may be worth while for you to stop eating it for 2-3 weeks and see if that makes a difference. Gluten is hidden in a lot of food products such as soy sauce so you have to read labels carefully. There may be other foods causing heartburn too - the ideal way to test is to do an elimination diet (ED) where you eat a limited amount of foods that are least likely to cause health problems - and slowly add new foods watching and recording any negative reactions in your body. Of course if it's a medication or supplement causing the heartburn, hopefully your Dr. can help you make changes. If you go to Dr. John McDougall's website and type ED in the search function you'll find info on how to do it properly. Lots of people with AI on his website who used ED to eliminate or reduce health issues.
I echo the advise above -buy some preservative free individual vials of lubricant eye drops and start putting drops in your eyes a few times a day to protect your eyes from serious damage. Take sips of water through the day or chew sugar free gum or suck on sugar free candy.
Good luck and (((hugs)))
Thank you everyone for your advice. I think I'm going to stop obsessing over this and try to relax. I have my doctor's appointment this week so I hope to have some answers soon. I will post an update then.
When your mouth goes dry, you no longer have the saliva flowing into your stomach and you get heartburn because the acid comes up.
When the weather gets hot, put your eye drops in the fridge! (It's hot here, made me remember that I should do that) They feel great when they're cold!
Good luck at your appointment!
Just an update. My bloodwork for the early sjogren's test was positive. I'm relieved and devastated at the same time. The dr started me on plaquenil generic. I'm praying it works for me, I have 3 children and a husband to fight for.
I'm just scared of what the future holds for me.. Thanks for reading.
Quote from: MCE on July 06, 2018, 07:23:53 AM
Just an update. My bloodwork for the early sjogren's test was positive. I'm relieved and devastated at the same time. The dr started me on plaquenil generic. I'm praying it works for me, I have 3 children and a husband to fight for.
I'm just scared of what the future holds for me.. Thanks for reading.
It does help having a definitive diagnosis. Gentle hugs.
MCE...Sorry that you have a Dx of a chronic disorder. But, the positive fact that is that now you are on the road to treatment. It may well be a rocky road.. but, it is a step forward and your Dr. will tailor medication and tests according to your symptoms.
I have SJS and Fibro so symptoms can overlap.. however then meds can often both.
When you have next appt (if you have not had these tested) ask to have Vit D and B levels checked. They are often low in Sjogrens and other Autoimmune disorders.. so if needed getting on top of this early is good. Although in the summer sunshine is best source of Vit D not so much in other seasons. Just a side note for you. Even though you feel awful (I used to wake up and feel as though I had gotten no sleep.. just exhausted) a short walk helps. and learning to do deep breathing. When we are stressed we do shallow breathing. Your kids can do this with you..MOMmmm! lol.
Quote from: quietdynamics on July 08, 2018, 11:51:22 AM
MCE...Sorry that you have a Dx of a chronic disorder. But, the positive fact that is that now you are on the road to treatment. It may well be a rocky road.. but, it is a step forward and your Dr. will tailor medication and tests according to your symptoms.
I have SJS and Fibro so symptoms can overlap.. however then meds can often both.
When you have next appt (if you have not had these tested) ask to have Vit D and B levels checked. They are often low in Sjogrens and other Autoimmune disorders.. so if needed getting on top of this early is good. Although in the summer sunshine is best source of Vit D not so much in other seasons. Just a side note for you. Even though you feel awful (I used to wake up and feel as though I had gotten no sleep.. just exhausted) a short walk helps. and learning to do deep breathing. When we are stressed we do shallow breathing. Your kids can do this with you..MOMmmm! lol.
Thank you, I just hope the plaquenil works for me. I need my energy back. I've been in bed for months now. It's depressing. My vitamin D is low and I'm take liquid vitamin D3. My doctor was hesitant to prescribe strong vitamins since I have kidney stones.