I'm still trying to wrap my head around this news. I suppose it's only preliminary until finalized by the rheumatologist next week. One of my prerequisite medical visits slipped up and talked fairly freely with me. He said I have a text book case of Sjogrens Syndrome. But I've had these symptoms so long I'm surprised they are just getting around to telling me. Dry eyes, dry nose, dry ear canals, dry mouth, dry dry dry... Then there is the joint pain and mental confusion. Those have progressively gotten worse. And my feet have hurt so bad for so long that I haven't worn regular shoes other than flip flops for 2 years now. Even when it snows. I don't even want to talk about most of it. And talking to friends is awkward and embarrassing. They've never heard of this, and I can't even say it right. Maybe its my imagination, but the dryer my mouth has gotten the more "tang toungaled" I get. I have never previously had difficulty pronouncing anything. Now, I can't have a conversation without tripping over my tongue a couple of times on a good day and on a bad day... just forget about it. It's never been so hard to run my mouth and I have had a big mouth all my life. I don't know how to function without yammering away 90 to nothing. It's deeply depressing. I could just cry... except... hello I don't have the tears for it. And I think that hurts worse than balling madly because I tend to hold it in painfully since balling is just making noise now and not all that relieving. Anyway, I wanted to introduce myself and hopefully get to know some people. GG
While I am glad that you found us, I do not like it than anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.
Sjogren's – Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.
You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.
I like also suggest that people with AI diseases read "Spoon Theory" on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
1. Don't Panic – Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book "Feeling Good" by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.
2. Breathe – For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.
3. Meditate – Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think "I am" as you breathe out, think "calm". Repeat as needed. Meditation can be as good as sleep.
With Sjogren's we tend to have a lot of infections so wear your "polar fleece mumps scarf" to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.
Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.
I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three S's of Sjogrens.
WELCOME! You sure do have a textbook sounding case. We have tons of helpful hints that eases a lot of the symptoms.
Humidifiers are great when you are sleeping (just to have on in the house as well)
Good moisturizer, chapstick, nasal spray and GOOD eye drops. I keep bottles all over the place.
A lot of people here swear by Biotene products but I've never used them. I think they are for the mouth, like toothpaste, mouthwash, etc.
If your dr prescribes you the meds, plaquenil and either salagen or evoxac are very helpful. They salagen and evoxac should help with the tongue tie as they increase your saliva so your tongue doesn't stick. Unfortunately, it's not your imagination ::). Restasis is great for eye dryness.
A q tip with either saline gel or vaseline can really lubricate inside your nose when it's dry.
Here's a biggie: Don't push yourself. The fatigue will come upon you with a vengeance! Pace yourself and rest often. Get a good night's sleep.
The brain fog is one of our sjoggie trademarks! We actually have entire threads devoted to this and giggle over the resulting mishaps often ;)
If I may offer some advice that I learned here: don't talk to non-sjoggies about this too much. They can't understand and it drives a lot of people away. Even our spouses and parents have a difficult time discussing it because they just don't know what to do for us. Just take a cue from the people you talk to. If they seem uncomfortable, come here to talk. You can talk to us about anything, because we're going through it too.
And type in keywords in the search box on the upper right and you'll find tons of info here already.
Hope to see you around here often!
I'm having a lot of pain tonight-- joint or bone pain. I've only heard one person complain of their bones hurting rather than joints and that was my housemate who died from bone cancer so I feel really strange voicing that it's really the entire bone not just my joints. Obviously, I'm not dying. At least I'm not dying tonight or probably any time soon. But seriously my bones feel like they are on fire and it radiates outward throbbing sometimes. The joints don't hurt any more than the rest of the bones. And it doesn't seem to matter if I'm moving or still. It just hurts. More at night than by day. A hot shower helps more than pain meds but I can hardly stand under the shower all night. I don't have that much hot water heater or I'd try it. My hands are fat and red too like pregnant hands. Anyway, brain foggy is a big deal for me because I had a head injury a long time ago and already have some brain damage. So the least little foggy and I'm darn near got the iq of a turnip and the personality of a dead puppy.
The PCP gave me a prescription for d3 she said my levels were significantly low. I thought that was weird because I try to do alternative medicine if I can and I'd been using 5000 d3 to help with the added "joint pain" on the advice of a holistic woman. I didn't notice it helping but it seems like if I am deficient while I was already taking the supplement I must be even lower than they realized. But she told me not to over take it so I'm still taking the same amount but now I don't have to buy it. The ocean spray she gave for nose seems to dry it out more so I quit that. I have some almond oil left over from another project so I've been pouring that down my ears a drop every night and swabbing nose before bed. It helps but nothing stops the dry mouth.
I've lost my teeth over that. Very embarrassing at 40 to be toothless. Or at least to be able to keep my fakies in a jar overnight. LOL But what good does it do? I figure in an odd way it helps me to eliminate unkind people from my life before they hang around long enough to be a problem if they can't see past the imperfections long enough to realize that there are perfectly good reasons for loosing your teeth other than just being a lazy person who should have brushed. It would be nice if the world was less judgmental but I'm not sure I'd be different if I hadn't had to face those facts personally. So I try not to judge the judgers too harshly. On good days, I remember they just don't know any better. On bad days, I have a harder time with that and I wish they'd shut their pie holes.
Medical professionals aren't much better so far. A nurse told me today, if my mouth was dry I needed to drink more. If I drank more, someone would have to deliver drinks to me on the toilet. I'm already running to the bathroom every 30 minutes because I'm drinking plenty. But that doesn't make it to my mouth or eyes etc. I slather on a ton of lotion too. I've been trying to find a balance in lotion because the less expensive brands don't cut it but as much as I need it's hard to spend $10-15 on the really good stuff. I may have to just break down and stock up on a sale. What do you do about your scalp? Does that dry out too? Mine feels sunburned its so sore, but it can't be I hardly leave the house. I only cook with fish oil substitute products rather than butter or olive oil because holisitc practitioner said that was more moisturizing and would help inflamation. Can't see it helping and I changed that New Years. I have good eye drops and they work, but I'm terrible at putting them in. Major eye-poking phobia. Most of it ends up on my face but just getting it in my lashes seems to soothe the irritation. I feel like I'm rambling so I will end now. Thanks for your support and suggestions. GG
Hi and welcome to the Forum.
Have you tried gum to help with mouth dryness? I use Trident with zylitol (sugarless)and found that I don't even have to actually chew the gum..just the fact something is in my mouth makes my mouth produce more saliva. Plus, it's spearmint or peppermint and helps with the worry of feeling like you have bad breath.
Do you find that when you smile your lips won't slide over your teeth...they get stuck because of the dryness? I read somewhere a clue your mouth suffers from dryness is if you have lipstick on your teeth. Seems like if your tooth surface is dry from the lack of saliva , lipstick sticks to your tooth when you smile.
yes, there are so may frustrating and annoying things with this sjogrens
eye2dry
You must have missed that part of my post. I don't have natural teeth anymore. My mouth has been so dry for so long I lost them in combination with other mitigating factors. But Yes, when I did have them I had those problems... lips sticking to teeth. And gum helped. I don't chew gum now because it's not really moisturizing when most of the surfaces inside your mouth are covered with dentures and because when my mouth is at its driest I can't even wear the fakies so I can't chew gum. GG
I have re=read both your entries and don't see mention of trying pilocarpine, brand name is Salagen. It helps you make more saliva...it really works for most people. It is too late to save your natural teeth but may make your mouth more comfortable to wear your dentures.
Another saliva producing prescription is Evoxac.
I am sorry you have all this going on...hopefully it will ease up some so you can get to feeling more comfortable.
Hi ashewoman,
First, let me properly welcome you; Welcome to Sjogren's World! ;) :D You'll find lots of people here to encourage and support you, so you've come to the right place.
I'm sorry that you're having so much joint/bone pain. I can relate to that, unfortunately. I have a lot of it in the feet and knees.
Also know the annoyance of the dry mouth, ears, eyes, etc. There are treatments to help with it.
As eye2dry mentioned, there is a prescription med, Salagen, to help with saliva production. There are some good OTC products made by Biotene you should be able to find in most Walmarts or Walgreen's stores if you're in the US. There is a mouthwash, a gel that is good, toothpaste and a mouth spray I use all the time.
I know...drinking more water isn't going to do anything. :P
MissyLouWho? has some great advice, too. She saved me from some typing. :)
When you see your doctor next time, I'd suggest to ask what course of treatment they might suggest. Plaquenil is a med many of us take; it can help with the joint issues, sometimes the brain fog, and fatigue.
You mentioned eye drops...are you using any in particular? You want to stay away from anything that is allergy-related or says helps redness. They have ingredients that may dry eyes worse. Only buy ones that are lubricating drops specifically for dry eye problems, such as Optive, Genteal, etc. If you see an opthamologist, they may suggest you as a candidate for Restasis drops, which help the inflammation as well as dryness.
I understand just being diagnosed there is a lot of information to take in. Please remember your symptoms can all improve once you get proper treatment. Keep us posted please.
I hope this helps a bit. We look forward to hearing more from you.
Melinda
Thanks to everyone for all the suggestions. It is a lot to take in. For now I'm limited to the prescriptions my PCP orders. It seems to me she is addressing symptoms rather than the cause of the symptoms, but I suppose the specialist is going to address the root of the problem. She has not given me the oral solution for saliva that you all have mentioned. She gave me a prescription mouth wash to help with a series of unusual mouth infections ranging from thrush to ulcers to a black tongue. She says these are probably due to dry mouth wrecking havoc with my defenses. She finally increased my pain medication so at least I have some relief for the pain. Tonight my hands are swollen worse than the last month of my pregnancy and I'm very stiff, but the pain is manageable with the increase in medication that I've been allotted. Also she's given me ear wax oil treatment to help with ears but frankly I use it less because its so darn greasy that I feel slimy after applying it. She also prescribed the ocean spray which I think I mentioned seems to help for an hour but then it's worse than it was before using it. Using a pharmacology grade body oil in my ear canals and nostrils works better and is less gunky. I've been prescribed lubricating eye drops for several years. Lately, I use them more than ever before-- several times a day now and still feel gritty. They are definitely oil-based. If you miss your eyeball, it feels like wiping baby oil off your face rather than water. Until I see the specialist on Friday the 4th, I won't get more specific treatment. I've been waiting for that appt since Jan or Dec when my lab work first suggested auto-immune deficiency so I'm glad it is finally around the corner. In response to the suggestion of a humidifier I priced them online today, but its really overwhelming to pick one. They seem to range wildly in price and capability. I'm about to the point that buying the goofy pink baby girl one will work just because it's inexpensive. :) Meanwhile I'm slathering three times a day in expensive body lotion. The cheaper brands and normal skin versions feel like they are completely gone half an hour after application. But I can get by using something more costly less often. It probably evens out financially to pay more and apply less, and it certainly saves time and itchies. Do the rest of you notice being super sensitive to touch? I feel like I'm shedding hair constantly and every one of them drives me nutso tickling like something crawling on me. I'm sure I always shed hair before but now I'm more aware of every single strand. I am also constantly bothered by my clothing touching me. It is annoying to me-- like a nagging pressure. I've tried to compensate by wearing very loose clothing, but if I buy them any larger they are going to fall off and I'm still uncomfortable. I have a necklace I've worn for years with no problems. Now I feel choked by it although it is on a very long and loose chain and weights almost nothing. Earrings and rings are out of the question. The pressure of wearing a seat belt is another constriction I can't avoid. I have seen peripheral neuropathy listed as a symptom but I thought that was when your feet or hands fell asleep due to lack of circulation. I wouldn't say I am tingling or that it is limited to extremities. It's just an extremely heightened sense of touch. Anyway, I appreciate everyone offering information and support. Hopefully, the Rhuematologist will supply a more productive treatment than just fighting off symptoms one by one. GG
HI Ashwoman,
I also can no longer tolerate any metals or jewelry, including rings, bracelets, necklaces, watch. I can also relate the issue with the clothes and can wear only cotton or silk. This includes the threads that hold the clothes together so I have to remove the tags which seem to be sewn in with synthetic threads. The dermatologist had me start with CeraVe cream. It has helped more than most other creams and not so expensive as many I was trying. Good luck and welcome again!
Gayle
I wish you luck with more answers at your appt. next week.
Just a suggestion; you may already be planning to do this, but it's helpful to summarize ALL your symptoms to tell the specialist. And I mean all, no matter how small or unrelated you may think they are. The more they know, the better they can help you.
They seem to do well if you make the list short and sweet and to the point.
I'm glad that your pain is better. Hang in there and keep us posted. :)
Melinda
Hi Ashewoman: I also want to say hi to you. I have Sjogrens and Fibromyalgia. SJS diagnosed 5 years ago and Fibro dx about 3 years later. I have many of the things you talk about. Losing hair, hands hurting, sore joints etc. I eveh have two knee replacements, but I am not sure if SJS had anything to do with it, or it's just plain old osteoarthritis. I am in my late 60's so I am much older than you. It's bad when a younger person has to deal with this. Older people sometimes have more life experience and tend to be able to manage this disease and it's complications. This is not always true, but it makes sense.
I am not going to comment more because you'll be seeing your dr very soon. I do notice in your posts that you may not be getting your mind off your disease and ruminating on it. I say this not to be mean, but we all have to take a break from the bb and our disease at times. Try and do something you have to get into" and you won't be able to think about your problems. I don't know if you are comfortable seeing a movie, but that's one idea; You probably don't like to window shop and it might be too hard to do, as I can't shop but one store at a time and then I'm done.
Please treat yourself well and if you can, do something nice for yourself. Sometimes helping someone who is worse off than you are can make you feel better. This is all temporary of course, but it helps us deal with reality and be able to cope better. I became a volunteer after my diagnosis for an airplane museum. I worked 4 hours on a fri afternoon. I loved it but had to give it up when my knee got so bad. I had a replacement in November. I had the first one done about 9 years ago. I am thinking about signing up again, but need more strength in my leg. I sincerely hope you can get some mental and physical relief. Lucy