I could not figure out a better spot to post this.
The Sjogren's Society of Canada held its Second Annual National Patient Conference on April 4th and 5th in Toronto. On Friday evening there was a Welcome Reception. The food was very good and the company was better. There was such a feeling of relief, to meet and talk to others with similar problems who really could understand very well all of the health issues you might mention, much like this site but in person.
The day of lectures and exhibits was Saturday and Dr Ann Parke was the lead off speaker. She is a noted expert in the field of Sjogren's and a professor at the University of Connecticut School of Medicine. She gave an overview of the disease. She said that the current concept is that Sjogren's is a consequence of autoimmune epithelitis that results in the infiltration of lymphocytes into the affected tissues.
She spoke about the role of hormones and the possibility that Female Androgen Insufficiency plays a role on the disease and also mentioned that some now consider Sjogren's Syndrome to be SLE of the mucous membranes.
It is always reassuring to hear Dr. Parke speak. I feel happier to know that research is going on, though I know that patients have a role to play here also in mobilizing support and raising awareness.
The next speaker was Dr Rookya Mather, an opthalmologist from the Ivey Eye Institute in London. Dry eye was certainly a topic on everyone's mind and she gave us strategies to take control and be proactive as well as everyday tips for home, office and travel. We all need some stress in our lives but we need to keep it from becoming too much, to try to prevent it before the stress itself is a crisis on its own.
She stressed the idea of taking action early when you are not exhausted and getting help and support. She said that unless you have breast cancer it is wise to take 1000 mg per day of a good fish oil. Other suggestions: Limit negative input. Enjoy today and if you are feeling good offer help to someone else. Every day write down 5 things you are grateful for.
She also mentioned new treatments for the future. In a response to a question she said that if you use eyedrops more than 4 to 6 times per day you should use a preservative free product.
Next was Dr Christine Derzko, an Associate Professor of Obstetrics and Gynecology at Saint Michaels's Hospital, discussing the obstetrical and Gynecological considerations. I paid less attention to pregnancy and contraception than I did to the sexuality and pain issues as well as menopause and its management. I loved the idea that estrogens have a natural killer cell function and that progesterone is immunosuppressive. She told us that vaginal dryness starts in many women in their 40s, before menopause and that long acting KY jelly or a product like Replens may help as well as vaginal estrogen. She also mentioned the possibility of androgen or testosterone preparations in the future.
At this point lunch was the main feature...
After lunch Dr Miriam Grushka spoke. She is a specialist in Oral Medicine and has a particular interest in burning mouth syndrome. I found out that burning mouth is usually a yeast infection and saw many slides of abnormalities in the mouth and tongue. I did not know that canker sores are frequent with Sjogren's and I now want to try a chlorhexidine mouthwash. She mentioned that if the PH of your saliva is below 5.5 you have a greater risk of rampant dental caries.
She suggested a product called "Just Gotta Sing" for dry mouth and throat. Also lemon flavoured Spry mints, Recaldent, MI Paste and GC Tooth Mousse.
The final speaker of the day was Ruth Fremes who many know as the co-author of the book "A Body Out of Balance" She had practical suggestions, like prioritizing your list of questions for the doctor and at the end of her talk quoted Hillel "I get up, I walk, I fall down. Meanwhile I keep dancing"
I am going to try to follow her advice about getting rid of the "should of". Change it to "I want to..." The should of feeling leads to guilt which puts you on the path to depression. Fatigue is also a clue. It is saying this to you - "You need to rest".
She also included a hand out of anti-inflammatory diet tips which I plan to use.
So I would say that the Conference was again a resounding success and the time went by too fast. As i said in the beginning it is great to meet others who share your symptoms. Ruth also emphasized the benefits of self help groups and this was an in-person experience. A day that ended too soon as there was a lot more to find out.
I did not mention a highlight of the day. Ten doctors agreed to be available for the roundtable discussions mid-afternoon. All participants were able to choose their top 3 areas of interest and ask questions. I got useful information from an optometrist, a rheumatologist, and immunologist, and the dry mouth Dr.
The top exhibitor in my opinion was Renee Chabot-Huculak on behalf of the Niagara Dental Hygenists Association. She knows so much about dry mouth and dental products that she was talking all day and was the last to leave. Once we found out that she could tell us our PH level there was almost a line up to try the strip.
I was also able to get a SonicCare Toothbrush at a dynamite conference special price and found out a lot more about Tranquil Eyes as I was one of the demonstrators.
The date is being set for next year. Elaine Alexander will speak about Brain Fog, another speaker will cover Peripheral Neuropathy and depression is also going to be a topic.
Annette
Thank you, thank you Annette for this wonderful report on the conference. I'm so glad you got to go and meet so many nice people.
My daughter has promised me that when our conference is within driving distance she will take me. Now all I have to do is find one that is close.
I enjoyed your report so much, it made me wish I were there. I would love to hear Ruth Fremes speak. I love the book "A body out of balance". Only my preference, but I think it has more information for the average Sjogren's patient than the Sjogren's Syndrome Handbook.
Once again thank you so much for taking the time to tell us about the conference.
Hugs, Pooh
Thanks, Annette. Your thread was almost as good as actually being there. You were quite descriptive in what you saw. I only wish they would have a Sjogren's Syndrome conference here in S. Florida. Next years speaker sounds excellent as well.
Thanks again.
hugs
Barrie
Wow, Annette! Thanks for sharing this. So did you get your pH tested?
Are you a member of a local support group? I saw in the Sjogren's newsletter that there is one in my area. I'm going to check into it eventually. I wonder how many here are members of local groups. But your experience made me more anxious to find one. I can't believe how much this condition affects every day life and requires so many preventative measures that I've become so less social. It's always nice to spend time with a good friend of mine who is a doctor because I don't have to explain anything I'm doing with my eyes and mouth and body while we're talking. I imagine we would feel the same way being around others with Sjogren's.
Amy
HeyAmy
Yes I got my Ph tested and it is a colour scale from yellow shading up to green. I want to buy some and check it myself. Mine was 2.8 , maybe 1 level from the bottom. There was only 1 of us out of the 5 I saw who got to anywhere near the good level of 5.5 to 6.
I am in a local group. We are trying to make the groups as local as possible so no one is driving too far. Once the groups get up to 15 or 20 we can get speakers even to the local meetings. We had a speech language pathologist at one and that was great.
You are so enthusiastic and persistent - I bet if the local group is kind of moribund you can give them a shot in the arm.
Annette
Annette,
That is really interesting about the pH strips. If you do buy some, can you share what they are and the levels those particular strips consider normal?
I'm going to investigate everything you mentioned. You also said you were a demonstrator for Tranquil Eyes. Does that mean you use them currently? I've been thinking about buying them but wonder how much I'd actually sit down and use them. I've had such huge relief from nasal irrigation that Tranquil Eyes may end up being a lifesaver too.
You mentioned your group had a speech language pathologist. Did that help your own problem? I'm finally doing pretty well with my breathing. Seems to be all lung, in my case. But my local newspaper did a feature on vocal cords and how to avoid irritating them (it was for people who had severe issues) and I can imagine that all of us would benefit from that. I stopped clearing my throat years ago, due to the pain. That sure helps!
I'm surprised to read you think I'm enthusiastic and persistent. I get really overwhelmed at times but since I stopped working last year (!) I am able to deal with things better. And also a bit shocked at a support group being moribund but I guess that makes sense. I have no experience with them - is yours this way or any in the past? But I imagine everyone at the patient conference was fairly upbeat or they never would have made it. Is that correct?
Thanks so much if you ever have time to answer these questions.
Amy
I think some of the people who attended were anxious and had complicated problems but mostly you're right. The questions after the lectures showed problems that were unsolved and frustration with slow diagnosis, lack of action, and lack of belief on medical professionals part.
The group in Ontario is pretty active in general. When I said moribund group I was thinking of an RA group I wanted to join once. It turned out they were all elderly and very disabled and only a few were active. Also they only met during the day when I worked.
It was reassuring to hear the speech language pathologist talk about the effects of Sjogren's on speech. And he did believe that I had some issues which could improve. I have since found out that some of what I have is muscle tension dysphonia. I am supposed to regularly - like every hour - monitor and release tension in head, neck , jaw and shoulders.
The Tranquil eyes thermal has little gel inserts with a small metal disc in them. If you click the metallic bit it releases heat. You put a moist pad over that and wear them for some relief. You can "reset " the gel things by putting them in boiling water and you can do that 100s of times. Also it is possible to cool them if heat is not what you want. I have a pair but they are sort of in reserve. I have been OK with my drops and gels.
Pretty exciting that you stopped working. You must feel much better.
Annette
Annette,
Thanks for all of the information. I really appreciate it.
I'm glad you finally found the solution to your breathing issues. I "hit the wall" (as Irish puts it) on my TMJ pain and went to the dentist who offers therapy that my own dentist had been pushing me to see for years. She looked at x-rays and determined mine was mostly muscle and nerve issues. So I have a splint and she shared some exercises and massages that provide relief. I think this must be similar to what you found was affecting your breathing. If I stare at the computer for too long, I get this choking feeling under my jaw and in my neck. I wonder how common this is. I never thought the muscle issues would be so severe - never thought I'd have any muscle issues, actually!
Quitting work did help, but mostly by removing the guilt and stress that I wasn't performing as well as I should have been. I'm an engineer and my project required so much concentration and staring at a computer screen all day. I could barely see after a few hours and don't know how I managed to drive home most days. Not sitting in a chair all day is heaven! Right now, I'm still kept very busy with my three children. And so I can spend most of the day moving and not sitting.
I think we once shared our age. I'm 42. I was expecting to be able to work for at least 20 more years. I feel fortunate that I can take a break for now, or forever, if necessary. But that doesn't remove the frustration that my brain can't make these physical things just GO AWAY. Seems that it isn't true that if you really want something and work hard, you can achieve it. Grrrr. :D
I wish you the best.
Amy
After reading all of your posts once again so much explains what I have been trying to tell my doctors all along and they just say it is anxiety. Yes, it is anxiety b/c with more pain the more the anxiety b/c I dont know what is going on? In that I am in my forties too and the thought of this is my life now, pain and all is not a peaceful thought.
But, to be knowledgeable and to know what is going on helps.
Two things I would like to know. First of all I have this tension type pain too in my neck, jaws, throat and shoulder. Even when I try to move my head from side to side, back to front I hear creaking sounds like that of a skeleton. I was wondering what exercises you said you do to relieve this pain esp when sitting at a computer? Mine seems more intense then too.
Second question is, what is nasal irrigation and what does it help?
I am trying to learn how to combat all these problems so that I can live a decent life.
Today I got cautery done to my lower right eye. I had plugs and am on Restasis but still painfully dry.
I am on Plaquenil and have been since Jan. praying that it will kick in. Shouldnt it have kicked in my now?
What did they say at the conference was the best thing for inflammation? Diet, meds, Evening primrose oil.......?
Thanks so much for sharing.
I would love to find a support group in my area but dont know how to find one. I dont get the newsletter either but would like to.
faithful
I don't have exercises to release that tension. I was told to monitor and release it every hour and to put a note on the computer as a reminder. My neck crackles up a symphony like yours. But if you tense a muscle and then consciously let it relax it will go back to a less tense state than when you started.
On a list of self help reminders that Ruth Fremes provided at the conference the first on the list was this. "Be aware of tension in my face. clenching my teeth and jaw and release. Rest my tongue against my lower teeth" I think that helps me a bit.
And there are general exercises that could help with strength in the upper body that might help a bit. I always used to get a really tight painful shoulder and I am stronger and it is lessened. I would look at osteoporosis recommended exercises to be ultra careful that you do not hurt yourself though.
I have punctal plugs and use Restasis. In addition I use a warm compress in the am and pm for 5 minutes. I try to remember to use a blepharitis lid and eyelash sort of wash almost every day. My eyelashes kept falling into my eye and the optometrist recommended this (In my case I use Blephagel). I also use a preservative free gel at night. I thought it felt a little irritating to use so the Optometrist said to use preservative free drops first.
I don't know if all that is necessary but it's now habit and it works for me.
There is a lot on this site about nasal irrigation. I just use a saline spray when I need to but I was so impressed by what people say that I have the whole kit. It was even on Oprah. The Drs get lots of samples. The ENT I saw had a whole cupboard full
Good luck
Annette
Hi Amy
I'm 60 this year and still working. Yes I bet you are still very busy. I don't think I could look at a computer that intently any more. Even if I do sudoku puzzles on line I can only do one or 2 a day.
What's your splint like?
The therapist said that there should be space you can feel between your thyroid and your vocal cords. Mine are sort of right on top of each other.
It's funny. Today all my fruit has been tasting like insecticide. I hope it's not just me
Annette
Hi, Faithful.
You referred to some of Annette's posts and some of mine, I think. So I see Annette has responded and I will share a few things too.
The exercises my TMJ dentist suggested were the typical ones to release tension in the neck and shoulders. Like bend your neck toward your shoulder, then rolling around against your chest and to the other one. She suggested I also push my neck closer to my shoulder with my hand. I don't know what your condition is, so please do not do these if you feel pain or maybe you should talk to your doctor first.
The ones for my jaw that really, really help is to put my thumb inside my mouth against the cheek and take the fingers and rub the muscle from top to bottom. When she did it, it brought tears to one eye (that's always nice to have some moisture, though, isn't it?) and when things are really throbbing, it hurts but mostly just feels good to do that massage. She also told me I could massage the side neck muscles and also put my fist under my jaw and push down against my fist with my jaw. I have not had much success with those.
I also have the splint she made for my upper teeth that was very expensive but helps a lot. I wear it at night and during the day when I'm doing something that makes me tense or I already am feeling the pain.
I'm seeing my TMJ dentist again next week and I'm going to ask her about the throat problem - where I feel like someone is choking me. I had it just sitting in front of the computer earlier, it was not stress. I think if I keep my head in one position or for too long, it happens. Maybe she will have a suggestion since everything else she has done has been very helpful.
I wish I could help with your eyes and plaquenil. I have been told to pursue plaquenil but have not yet. And although I don't really have any new advice for your eyes, (Annette gave lots of advice) I have lots of sympathy. It really affects quality of life! I absolutely hate what my dry eyes have done to my lifestyle.
I did some quick searches on Dr. Ann Parke, the speaker Annette mentioned from the conference and found two helpful links. I think they have been updating all of these information websites because they continue to add more symptoms and areas that Sjogren's affect. I'm so pleased!
http://www.niams.nih.gov/Health_Info/Sjogrens_Syndrome/default.asp
http://wiserwiki.com/Sj%C3%B6gren's_Syndrome
You will see some of the more typical treatments for the inflammation listed, along with other helpful tips.
Good luck, faithful!
Amy
Hi, Annette.
Isn't it horrible to stare at a computer now?!?
I found an online picture of a splint. This is not where I go, just one hit when I searched.
http://www.dentalgentlecare.com/new_page_23.htm
My dentist also schedules a series of appointments to adjust it as your jaw relaxes and the position changes. I can't even talk about how much it costs. My insurance actually pays for a big chunk of it, though. I paid for it on Valentine's Day and told them it was my present. And it has been, because it really helps. I was unable to relax my jaw at night and now it's not an issue. Apparently I still clench some at night but it doesn't cause as much pain.
Wow, interesting about your vocal cords and thyroid. I know nothing about that or your diagnosis. I am planning to check in to everything you shared with us so maybe I'll understand what you mean eventually.
That doesn't sound good about the taste! I hope it is temporary. It's not like you need another thing to deal with.
Amy
I was pleased to hear that TranquilEyes was represented at the conference. I have been using mine for a year and a half--every night--and I don't think I could sleep without them. I don't use the foam moisture pads and have never tried the heating pads. I just can't say enough good things about the product. My eyes feel so protected at night. My eyes still get dry, though; I start out with gel, and add more PF drops and gel throughout the night. TranquilEyes goggles really moderate and extend the time when I'm actually comfortable while sleeping.
I use the rice baggy (microwaved) for the warm compresses twice a day. It's so soothing, especially at night. It relaxes my eyes and lasts so long that I almost fall asleep--that's good!
Calli
Thanks Amy and Callie. We sold quite a few of them at the conference. One of the drs who spoke at the conference mentioned swimming goggles but they would be too tight around the eye and offer no possibility of moisture. Next time I take a plane I will wear them some of the time. I may look a little odd but I will never know if I get funny looks
So Dr Parke wrote the Wiserwiki for Drs. She is a busy person!! She did a Grand Rounds at McMaster a few years ago and I got to go.
I am going to try those exercises Amy.
I know about the NeilMed Sinus Rinse because last year I demonstrated it, but just in theory. I would not do a nasal rinse in public (lol). They were great with the samples.
I know what you mean about the thyroid and its placement. Even when the therapist put my fingers on it I did not quite follow it. And it's hard to find people to check yourself against. Feeling people's bodies is pretty personal. If I could I would feel other peoples muscles throats for comparison. But not men. they're different
ANnette
Annette,
I wore swimming goggles in desperation two years ago but you're right, they are horrible. The suction hurts. The only thing that's good is they block the wind and evaporation. I had my upper ducts plugged finally and that really helped with the moisture at times, but not the burning.
I just wanted to mention that if you try those cheek massages, make sure you place the fingers up high, then rub down to the jawline. Repeat. I rub in several lines and really hit the places that hurt. It feels so much better afterwards. (disclaimer that I'm not a doctor and this may not be good for you, etc, etc.)
Oh yeah, I did not even say anything to faithful about nasal irrigation. It's so wonderful. My husband uses those breathe right strips at night and I keep telling him to stop paying all of that money and do the irrigation but he won't have any of it. I have so few problems with my sinuses since I began. I use Nasaline and mix my own salt mixture: http://www.squipusa.com/Nasaline/nas_about.html There's a video there. I no longer buy it from there because it's cheaper elsewhere. But this method causes less mess, I think, than with other methods. At least in my experience.
Amy
Annette,
Thank you for all the information...Could I ask for a bit more? Would you mind sharing the anti-inflammatory diet suggestions?
Quote from: annette2 on April 07, 2008, 05:53:08 PM
I could not figure out a better spot to post this.
The Sjogren's Society of Canada held its Second Annual National Patient Conference on April 4th and 5th in Toronto. On Friday evening there was a Welcome Reception. The food was very good and the company was better. There was such a feeling of relief, to meet and talk to others with similar problems who really could understand very well all of the health issues you might mention, much like this site but in person.
The day of lectures and exhibits was Saturday and Dr Ann Parke was the lead off speaker. She is a noted expert in the field of Sjogren's and a professor at the University of Connecticut School of Medicine. She gave an overview of the disease. She said that the current concept is that Sjogren's is a consequence of autoimmune epithelitis that results in the infiltration of lymphocytes into the affected tissues.
She spoke about the role of hormones and the possibility that Female Androgen Insufficiency plays a role on the disease and also mentioned that some now consider Sjogren's Syndrome to be SLE of the mucous membranes.
It is always reassuring to hear Dr. Parke speak. I feel happier to know that research is going on, though I know that patients have a role to play here also in mobilizing support and raising awareness.
The next speaker was Dr Rookya Mather, an opthalmologist from the Ivey Eye Institute in London. Dry eye was certainly a topic on everyone's mind and she gave us strategies to take control and be proactive as well as everyday tips for home, office and travel. We all need some stress in our lives but we need to keep it from becoming too much, to try to prevent it before the stress itself is a crisis on its own.
She stressed the idea of taking action early when you are not exhausted and getting help and support. She said that unless you have breast cancer it is wise to take 1000 mg per day of a good fish oil. Other suggestions: Limit negative input. Enjoy today and if you are feeling good offer help to someone else. Every day write down 5 things you are grateful for.
She also mentioned new treatments for the future. In a response to a question she said that if you use eyedrops more than 4 to 6 times per day you should use a preservative free product.
Next was Dr Christine Derzko, an Associate Professor of Obstetrics and Gynecology at Saint Michaels's Hospital, discussing the obstetrical and Gynecological considerations. I paid less attention to pregnancy and contraception than I did to the sexuality and pain issues as well as menopause and its management. I loved the idea that estrogens have a natural killer cell function and that progesterone is immunosuppressive. She told us that vaginal dryness starts in many women in their 40s, before menopause and that long acting KY jelly or a product like Replens may help as well as vaginal estrogen. She also mentioned the possibility of androgen or testosterone preparations in the future.
At this point lunch was the main feature...
After lunch Dr Miriam Grushka spoke. She is a specialist in Oral Medicine and has a particular interest in burning mouth syndrome. I found out that burning mouth is usually a yeast infection and saw many slides of abnormalities in the mouth and tongue. I did not know that canker sores are frequent with Sjogren's and I now want to try a chlorhexidine mouthwash. She mentioned that if the PH of your saliva is below 5.5 you have a greater risk of rampant dental caries.
She suggested a product called "Just Gotta Sing" for dry mouth and throat. Also lemon flavoured Spry mints, Recaldent, MI Paste and GC Tooth Mousse.
The final speaker of the day was Ruth Fremes who many know as the co-author of the book "A Body Out of Balance" She had practical suggestions, like prioritizing your list of questions for the doctor and at the end of her talk quoted Hillel "I get up, I walk, I fall down. Meanwhile I keep dancing"
I am going to try to follow her advice about getting rid of the "should of". Change it to "I want to..." The should of feeling leads to guilt which puts you on the path to depression. Fatigue is also a clue. It is saying this to you - "You need to rest".
She also included a hand out of anti-inflammatory diet tips which I plan to use.
So I would say that the Conference was again a resounding success and the time went by too fast. As i said in the beginning it is great to meet others who share your symptoms. Ruth also emphasized the benefits of self help groups and this was an in-person experience. A day that ended too soon as there was a lot more to find out.
I did not mention a highlight of the day. Ten doctors agreed to be available for the roundtable discussions mid-afternoon. All participants were able to choose their top 3 areas of interest and ask questions. I got useful information from an optometrist, a rheumatologist, and immunologist, and the dry mouth Dr.
The top exhibitor in my opinion was Renee Chabot-Huculak on behalf of the Niagara Dental Hygenists Association. She knows so much about dry mouth and dental products that she was talking all day and was the last to leave. Once we found out that she could tell us our PH level there was almost a line up to try the strip.
I was also able to get a SonicCare Toothbrush at a dynamite conference special price and found out a lot more about Tranquil Eyes as I was one of the demonstrators.
The date is being set for next year. Elaine Alexander will speak about Brain Fog, another speaker will cover Peripheral Neuropathy and depression is also going to be a topic.
Annette