Please welcome guest blogger for today, Connie Roberts from Brain Foggles and My Chronic Life. You can read more about Connie at the end of her post.
After being diagnosed with a chronic illness and going through feeling shock, sadness and anger, I settled in with the belief that since I was dealt this hand in life no other medical condition could come my way.
I felt that there had to be some fairness. After all I had been diagnosed with Ulcerative Colitis at the young age of 23 right after having a baby. That was bad enough. Just a few days after turning 40 I learned that I had a rare neuromuscular disease named Myasthenia Gravis. Surely, that was enough for one person to deal with.
But in the span of about two years I was to learn that I actually had more chronic illnesses, most of them autoimmune or caused by the autoimmune process.
One of my diagnoses was Sjogren’s Syndrome. This was something I had never heard of before. I actually had to learn how to pronounce the name (show-grins). I did know that I had many of the symptoms though. Once diagnosed I could get treatment to relieve them and feel a bit better.
I didn’t think to complain to my Rheumatologist about my dry eyes, dry skin, dry mouth and throat and other symptoms that I associated with Fibromyalgia or Rheumatoid Arthritis like overwhelming fatigue and joint pain.
During a visit with him, he noticed how dry my skin was and began asking me questions about the above symptoms. When I answered yes to all of them, he sent me to an Ophthalmologist. He examined my eyes and found them to be severely dry. At that time the diagnosis was called “sicca” which means dryness of the mouth and eyes. Soon after the Ophthalmologist and Rheumatologist had a phone conference it was decided to diagnose me with Sjogren’s.
I now have a Dermatologist on board to help when the dry skin gets to be too difficult to manage and a Gynecologist to help when vaginal dryness or irritation becomes an issue. I see my Dentist frequently and have three times per year teeth cleanings to prevent dental decay which can be caused by having a lack of saliva. There are other doctors involved in my treatment, but they overlap with my other chronic conditions.
I now have come to accept that I am indeed fortunate. There are many people seeking answers to their medical problems and not getting them. A diagnosis seems out of reach and with a lack of one, treatment is often delayed. Through my blogs I’ve received inquiries from people who believe they have Sjogren’s but because they don’t have the antibodies in their blood, a positive lip biopsy or positive tests from their Ophthalmologist, they live with the diagnosis of sicca or connective tissue disorder, or no diagnosis.
Due to very knowledgeable doctors who took the time to communicate, I received my diagnosis in a few weeks and began treatment immediately afterwards. I still have numerous symptoms but they are well treated.
Following is some information to help you become your own advocate if you have the symptoms of Sjogren’s. You can speak to your doctor, request tests and/or discuss your symptoms in light of your lack of positive test results.
Sjogren’s is often broken up into Primary or Secondary. Primary means that you have Sjogrens without any other connective tissue disorder. Secondary means that there is some other disorder present along with this syndrome. The most common disorders are Rheumatoid Arthritis, Lupus, Scleroderma and Polymysotitis/Dermatomyositis.
It is often more difficult to diagnose someone with Secondary Sjogren’s as they are more likely not to have the antibodies associated with Sjogren’s in their blood. Diagnosis is often a long process. It can take up to six years and is sometimes misdiagnosed as CFS/MES, Multiple Sclerosis, Fibromyalgia, etc. That is because this is a syndrome in which all symptoms are not active at the same time and if the disease has progressed, the symptoms are similar to MS, CFS/MES and even Lupus.
There are many tests that are used in diagnosing Sjogren’s. Often blood work is the first to determine if the antibodies are present. Ophthalmologists and Dentists can assist in testing for dry eyes and mouth but that doesn’t determine the reason. A Lip Biopsy is sometimes done by an ENT but there are many pros and cons about this procedure especially if you already have a pre-existing autoimmune disease.
Treatment for dry eyes can begin with over the counter artificial tears in single use vials, not in a bottle. You don’t want the preservatives from the bottle form which will irritate your eyes. If your eyes are very dry at night there are gels you can use. Avoid drafts of any kind.
For dry mouth, do drink water but not too much, also rinse your mouth (don’t use mouthwash as the alcohol will further dry your mouth), brush your teeth after meals and use sugar free hard candy or gum. Rest your voice if your throat gets dry.
For dry skin, use moisturizers of ointments instead of lotions. Don’t take long baths and lightly towel dry. Dry skin can become cracked and turn into an infection. This may seem like an uncomfortable symptom only, but it is important to prevent infections.
There are prescriptions for dry eyes, mouth and skin. There are also punctal or tear duct plugs that are inserted into by an Ophthalmologist. These are used for severe dry eyes. I have had two in each eye at times and then one. When my symptoms change I may need them to be removed or replaced. It’s a bit frustrating but they do help. I also use Restasis which helps too.
There are many other symptoms of Sjogren’s and they may require other specialists, tests and prescriptions. One important thing I’ve learned is not to self-diagnose yourself. Tell you doctor about any new symptoms you may be experiencing. Also inform your doctors about medications they may want to prescribe to see if the side effects are dry eyes and/or mouth. Ask questions! Be your own advocate. If you are not feeling well then take someone along who can do so.
There are many forms of support for people with Sjogren’s. There are local support groups sponsored by the Sjogren’s Syndrome Foundation, online support groups and chats and other chronic illness support groups in your community. Sandy has written a post about this previously.
The prognosis for people with Sjogren’s is good if your medical team is proactive in preventing, diagnosing and treating symptoms. There is a greater chance of getting Lymphoma than the general population so you should be monitored for that and know the symptoms yourself.
As with any chronic illness I have good days and bad. I try to rest when I feel fatigued and not overdo it when I feel well. There are also days when I feel overwhelmed but I know this will pass. I have family and friends that I can reach out to for a phone call or a laugh. I can write on my blogs and vent. And knowing that I can help someone is one of the best ways to keep my mind off of my pity party.
Sjogren’s Syndrome is getting recognized more frequently. There is research into the causes and new treatments. One day this will be a disease that no longer exists. I work for that but for now I also work for creating a knowledge base and support for people who are seeking answers.
Connie Roberts has multiple chronic illnesses. She is a Disability Advocate who uses her blogs to break stereotypes for people with all types of disabilities and chronic illnesses, especially invisible chronic illnesses. Her blog, Brain Foggles is a personal journal of being a wife, parent, friend, church and community member who has days when all she can do is prop her eyes open and try to put some words together to sound coherent. There’s humor and sadness, and it’s all real life. My Chronic Life strives to educate, inform and offer support on all types of health issues.
chronic chick says
I added you to my blog listing…. Have a bright and cheery day
My name is Sandra. I’d like to tell my story. Also I can hopefully offer some insight/support to others suffering from this condition as well as I hope to learn more here myself too!
I also have a lot to share by the way of information, suggestions, from my own experiences and through my knowledge with Natural and Alternative treatments that can help people cope with their physical pain, as well as the emotional aspects of having this type of condition in a much healthier way than drugs.
I’ve had so many overlapping symptoms for so long before I was able to get any clues as to what was wrong with me…Constant everyday aches and pains, bouts of digestive issues, eye irritation/dryness, awful flare ups of severe muscle and joint pain (that can last anywhere from a week to 6 months and then followed by remissions). Sometimes I have flu like symptoms/pain taking over my whole body! Other times and mostly often the pain migrates in upper back, shoulders, neck mid back ribs, chest,which can radiate even into under arm/breast area too. I experience soreness and painful arms and wrists upon movement, tingling/numbness in hands in the morning and even during sleep. I’ve also had bouts with leg weakness going up stairs and burning painful knees, an inner vibrating sensation, skin sensitivity, dry throat/choking and occasional difficulty swallowing, and/or feeling bronchial congestion (like inflammation around lung area?), uncomfortableness sore chest muscles, minor, occasional short-winded, dizzy (heart issues are ruled out) dry nose, headaches that seem to radiate from neck or in temples sometimes with pinching pain behind eyes etc, etc…bla, bla. Sometimes the pain is debilitating…Some days I’m lucky and I just ache a bit. But the pain is always there on some level “everyday”.
I’m sure most of you understand and can relate. The list of symptoms is endless! And if a person reading this, hasn’t experienced all these symptoms themselves I’m sure they’d think that I was a nut and/or hypochondriac! and regardless that I’m actually quite stable and a happy, upbeat person, I can tell you that this constant ailing and pain can drive anyone a bit crazy after a while. I can become quite irritable at times because of it!
Pain…Especially unexplained, consistent pain will cause anyone to become concerned. Just the worrying alone is indeed extremely, emotionally exhausting as well as the physical discomfort! Also…trying to “explain” to my spouse, family, friends why I just want to do NOTHING a lot of the time adds to the pressure. And I’m sure it also becomes boring for them to hear about my aches and pains for months at time too!!
So usually the best thing for me to do is to just be alone. And that can cause feelings of isolation.
However on a very positive (and (philosophical) note. I always did like a good challenge and I love finding solutions! So…I continue to do that everyday!
Anyway…After 5 years of contemplating, researching online for matching symptoms, mystery diseases, and worrying myself “sicker” about what fatal disease I might have. I was even more exhausted! I was suspecting everything from a Spinal Injury/Tumor to Widespread Cancer.
After doing my own extensive research I became mostly concerned with diseases like Lupus or MS (which runs in my family) and/or Fibromialgia, Lymes Disease, etc, etc. In any case I started to feel as though whatever it was that I’ve had is “systemic” and most likey a auto immune issue. I had come across Sjorgren’s Syndrome while skimming through the list of Rheumatoid diseases. But I didn’t really seriously consider it at the time because Sjorgren symptoms didn’t seem to match “all” of mine. I also hadn’t considered a few of my other “less prominent” symptoms like dry eyes, mouth and throat etc as being connected or even worth thinking about as the pain was my main focus at that point.
Anyway…Being a person who always chooses the “Holistic” route, I was understandably reluctant to see a “Medical” doctor (since that has never work out well for me, nor will I take drugs). However I was at my wits end! I finally agreed to see an Internist (a close friend of mine) hoping to get some kind of feed back from her about what I could possibly be suffering from. At the time my digestive issues seemed to be at its worst and at the forefront. But I also discussed the other symptoms with her suggesting that they might all be related in some way. She gave me something (Prevacid?)for acid reflux, nasal spray for sinus drip issues, and she said my back/pain and other aches were probably unrelated. She suggested I take the prescriptions and that I might want to consider Physical Therapy for my pain.
Needless to say I threw away the prescriptions and went to a Nutritionist. Within 3 months through diet, digestive enzymes, supplements etc I had pretty much eliminated the digestive discomfort. I also went for a specific type Spinal treatments for pain called Spinal Network Analysis (a form of mostly non to mild touch Chiropractic/Energy Healing work) which most definitely helped with pain and related muscle tension. I also started practicing Yoga 3-4 times a week for a while. But it became too strenuous for me and triggered a flare up. The only Yoga I was able to continue was the “Restorative” classes.
The pain flare ups would subside for a while. Sometimes even for months. But sooner or later they’d always eventually return. Any bit of overexertion was a set up for pain the next day, forcing me to stay in bed and rest…Or it would trigger a flare up lasting anywhere from a week to months. I never knew from day to day where, how, why or when the pain would return and/or how long it would last.
I finally went to see a Rheumatologist about 3 yrs ago because (believe it or not) a “Medical Intuitive” suggested it. She was giving me an Intuitive” reading. And though I had never even mentioned my symptoms to her at all she said that she was “picking up” that I had a Rheumatological disease/issue to address. She also said for me to be aware that I might not be taken seriously enough by the doctor and advised me to be very calm when /i saw her so that she would not dismiss me as being a “Hypochondriac”. I did follow her advice because although she didn’t feel that my condition was fatal she insisted that it was something that needed to be addressed. As well she said I must do so soon because I needed resolution to this issue so that I can stop the worrying and stress. Pretty amazing huh?
So…about a week or so after that reading I found and went to see a Rheumatologist. she sent me for a few blood tests, examined me and asked me questions concerning my symptoms. My blood came back excellent and she didn’t think that I had Lupus or anything else to be concerned about. When I called her back one day to asked her why I was still having bouts with pain, she replied…”Its damp out this week every one has aches and pain in this weather”. Typical! And as predicted by my insightful and gifted Psychic she certainly hadn’t taken me seriously at all!
So I saw “several doctors” over the course of 4 years (2 internists, 1 Neurologist, 2 Rheumatologists) I have some clues!
Finally after recently having many extensive blood tests I’ve now been told by a Neurologist (who I was sent to by my internist friend to check me for MS or Spinal disease) and the Rheumatologist (that the neurologist referred me to)is that my RF is positive. The Rheumatologist then took a 2nd test for RF (along with others) just to double check. Both RF results came back positive. So…both doctors say its definitely not “just” Fibromiagia. Its something systemic going on. Although it is possible that I might also have Fibro as a secondary condition, because of the many symptoms i have that match. But there’s not a definitive test to diagnosis Fibro anyway.
Other further, targeted blood testing for RA and Sjorgren’s came back negative. However my Rheumatolist still feels that there’s a very strong chance that I still do have Sjorgren’s Syndrome anyway. So he has pretty much unofficially diagnosed me as having a mild case of Sjorgrens with a possible secondary condition as beginning stages of RA or severe Fibro?…Maybe its possible that its just RA in early stages and no Sjorgrens?…Or maybe it is “just” Sjorgrens alone but in any case I’m suffering most of the symptoms of these diseases and I must treat myself for them. And its highly possible that due to my healthy life style (which I will explain below) these conditions might not have progresses as fast as they would have. So, though I feel all the symptoms my blood might not be being affected and isn’t showing positive results for the other more “specific” tests. (Since my pain is so bad during flare ups I personally feel that its not “Mild” anything! Nevertheless I’m determined to learn to live with it as best I can, whether its RA or Fibro (along with, or without the Sjorgrens).
Also, it seems that a lot of these “specific” tests can produce false positive/negative results too. Its pretty much a guessing game still, as to the “certainty” of which of these conditions or how many I really have for sure. However, I do have at least some information now to go on. My symptoms have been recognized as real and they are associated with certain conditions…And the RF positive results prove it! So in a sense that is good news at this point! Because much of the Mystery surrounding my illness (that’s
been haunting me for so many years) is hopefully finally on its way to being solved once and for all…Or at least as I continue to do my own further research I can hopefully find some answers for myself. My next step is to have my Nutritionist re evaluate my tests results (she is also a Biochemist) and to explore every Natural Alternative treatment that is available to help me deal with my discomfort and pain and continue leading a very healthy lifestyle (Emotionally, Spiritually and Physically).
Some heartfelt advice for anyone that wants to be as healthy as possible… Try your very best to “live” as healthy a lifestyle as possible. You’d be surprised what a tremendous difference it makes and how much control you really do have regarding the “managing” of your illness and pain. It feels good to know that you’re doing everything you can to make your life better.
I am absolutely positive that the healthy lifestyle I’ve chosen to live is what has allowed me to keep this condition from being worse than it could have been, had I not taken such good care of myself all these years. And/or if I had chosen the “Drug” and total Medical route to solve the problems of pain, emotional upset that my condition has caused me to suffer I might have had numerous other health problems and organ damage too.
Now…I suppose that I will need to re-adjust my lifestyle and direct my effort into becoming even more Health Orientated if I want to remain as healthy as possible. And who knows? Maybe I’ll even find a way on my own to reverse or improve my condition. In any case its empowering for me, knowing that I’m trying my very best to contribute to my wellness. Also I now know that there are many other people like myself who understand and we can all help support and inspire one another by sharing our experiences, knowledge and victories in managing our illness.
Knowing that we can choose to do or not do certain things that keep us as healthy as possible is empowering…And making the best choices for ourselves is using and experiencing our Power!
Being proactive in staying healthy certainly doesn’t mean that you have deprive yourself either. Going to “Extremes” either way never works long term. But there are some sensible steps everyone can take.
I’m certainly not a “Fanatic” or someone who sacrifices all pleasures in life. And everyone’s system is different and unique. What works for one, won’t work for another. Its always beneficial to consult with a Nutritionist or professional to personalize a daily Health Regime and Diet to suit your particular needs and lifestyle. And…there are also certain things that are simply just not healthy for “anyone”. And those are the things and habits we can choose to avoid an our own.
I hope that my sharing with you (below) many of the factors that I feel has helped me tremendously to keep my condition under control(avoid flare ups, manage pain, stay emotionally and spiritually healthy/balanced)and allow me to continue maintaining otherwise excellent “General Health will also help others in some way.
FYI:Concerning my personal health regime and why I feel I’ve been able to remain in otherwise excellent health regardless of this painful condition. Though “all” of these choices (that I’ve made for my own life/health) might not work for everyone…I do believe that many of these “ideas” will resonate with “some”. Or even if just one person out there who is suffering, and/or feeling helpless is inspired its worth my taking this time to encourage you!
So here goes…
I Don’t smoke,drink coffee/caffine, alcohol,(except for an occasional cocktail on a weekend or special occasions). No white sugar, white rice, bread, junk/processed foods cereals, artificial or chemically treated foods,or beverages/soda at all. Although I’m not a vegetarian/vegan I eat extremely healthy on a regular basis. I eat pretty much everything but I “try” to avoid dairy almost completely and soy products too. I eat pasta, bread or cookies and snacks made with brown rice and I stick to gluten free products and “Agave” or Stevia sweetened treats. Eat eggs, Butter (no margarine or butter substitutes!) Chicken, a bit of Red Meat…All of these animal products must be organic as well as fruit veggies whenever possible! Once in a while (on weekends or a special occasion) I’ll eat whatever I want (ex: a Pub Style Cheesburger or Pizza, and in summer a delicious Organic Ice Cream Cone!) etc, etc.
I have a lot more info I’d be more than happy to share about how diet ( eating or avoiding certain foods) and other lifestyle changes can help with so many issues if anyone out there is interested!
Being a full blooded Italian I grew up eating a wide variety of wonderfully fresh and home made foods. (I tasted McDonalds for the first time in my 20’s). Living in NYC makes exercising easy by speed walking almost everyday (an average of about 15 miles a week). Next month I turn 58 At 5’2 I weigh 119. Zero medications, not even Tylenol for pain. (I use other ways to manage my pain). Drugs don’t really heal they only mask pain/treat symptoms. (Except antibiotics can cure an infections). I do however take supplements/vitamins every single day, twice a day and Natural Digestive Enzymes and Priobiotics at every meal. I’m under the supervision of an amazing Nutritionist. I see a Chiropractor, Energy Healer, and even Massage even helps tremendously with pain and its soothing emotionally as well. All these practices help our bodies access the amazing ability to heal itself. The downside of course is that its very costly. I’m an struggling artist (songwriter/singer actress and writer/author)so, I have no health insurance at all either(for my medical check ups) either! But I have a wonderfully supportive significant other who I live with and helps support me financially. I sacrifice in other areas of my life (buying clothes, going on vacations etc, etc ) to be able to afford as many of these treatments as possible. Improving the quality of our lives is top priority and staying as healthy as i can is the way to do it!
I try to listen to my body instinctively. I believe that we can all learn help our bodies heal itself if we take more responsibility for our own health and make good choices. Learning how to use these magnificent, innate healing gifts and trust them is our greatest advantage in helping us cope and manage our illness’s. and since most illness are manifestations of our experiences, beliefs, emotional and physical traumas etc, trying to keep our stress level down is also a very important aspect in staying physically healthy.
When I am in a flare up and/or feeling down sometimes the best thing for me to do is just surrender to it and rest. I’ll try to sleep as much as I can allowing my body to heal itself. Of course I also have insomnia when going through these “episodes sometimes too, which aggravates the condition. But even lying down listening to some soft music, reading a good book is helpful and very soothing as well! sometimes we need to learn to just be and not be so hard on ourselves to always feel the need to be “busy” doing, doing. for many people resting is almost impossible too! With work, kids and/or family to care for there’s just no time to even be sick! (I care for my 82 yr old mom). But try your best to find and spend at some of that time to care for yourself!
Well…I hope that what or at least some of what I’ve written here has been of some help. If you’d like, feel free to communicate with me and send me your comments, input, advice suggestion. I wish everyone out there the very best. Stay Healthy and God Bless!
Hey Sandra. I know this was written awhile ago but wondering how you are doing with your health?
My name is Rose. I’m just going through testing, and dealing with the pain that just keeps getting worse every month. Sandra, your symptoms sounds so much like what I’m going through. Every day is a struggle, and this week is the worst one yet. Most days just walking is difficult and painful. I would like to make the progress you’ve made if only to lessen my symptoms until the possibility of being diagnosed with Sjogren’s. I also have several herniated discs that make the pain almost unbearable. I’d like to hear more about what foods to avoid, which ones to eat together, and when, etc.
My name is Rose. I’m currently going through testing to out-rule some other diseases. Sandra, your symptoms sound the same as mine. Aside from dealing with that, I have several herniated discs, being treat for depression, and I take medicine for seizures. I am interested in more about what foods to avoid, which to eat-possibly together for maximum success. This week was the worst one yet. I exercise lightly when I can, and relish the few good days I get. Weather I’m diagnosed with Sjogren’s or not, a healthier lifestyle will always increase your quality of life.
I am a desperate wife, my husband was diagnosed with sjogren’s about 6 months ago and since then I don’t know how to deal with him- there are times I feel he is exagerating but there are times his pain is genuine. he will not listen to my advice although I work in the medical feild and go to every doctors appointment with him and I really hear the doctors orders not like he does( what he wants to hear) I have asked several times and not gotten an answer to my question of whether a person with ss should drink alcohol or not–it seems he is worse after he does but he just won’t listen to me..someone please answer my question.