In my opinion, "you're doing great for someone with your medical problems, and you have to expect a certain constant level of fatigue (or 'discomfort', one of my favorite euphamisms for excruciating pain...)" really means "I've done all I'm going to do; the more time I spend with you the less my net income per nano-second; you're on your own, kid."

& the "constant" part means "don't bother me unless you have fatigue/discomfort/excruciatiing pain *more than* 24 hours of every day.

& so often all you need is oxygen.

Ordinarily, we increase oxygenation of our blood by exercise, but when your body has been through a chronic, oxygen-depleting ordeal & your muscles have lost tone & your heart may have become lazy, you can't afford to risk exercise.

You can still get the benefits, though, with an in-home oxygen machine.

I wish you the very very best.

Does your medical center have a dietitian avaiable? Or if you go to a large hospital like Mayo etc they might have someone who could review your meds/food supplements/diet and give you some suggestions that would fit with what the doctors are giving you. Wish I could be more help, but DH is back on chemo, so he is going thru some of these problems.

"There's times I literally can not force myself to move, I almost feel like I am in a semi comatose state." That's *EXACTLY* what I'm talking about, Ravencajun. It's nice to hear that this happens to someone else, though I certainly wouldn't wish it on anyone. About 15 years ago, I had a terrible case of acute sarcoidosis, which damaged my heart and my adrenals and/or pituitary and got me started with migraines. When I had that, I literally couldn't move. I would fall asleep on the benches in court during every break and ask the court officers to wake me up before the judge came in.

This isn't that bad, but it's exactly what you describe. My doctors are very thorough and test everything under the sun. My B12 and vitamin D levels are both fine.

Sylviatexas, I'm sorry if you've had that experience with doctors, but it's definitely not my experience. All of my regular doctors spend oodles of time with me. I'm the one saying, "Don't you have other patients to see?" They're all very personable and caring.

Marie-ndcal, I'm so sorry about your husband. I remember when my mother was on chemo and it was so hard for her to eat. It was like that for me when I had active sarcoidosis, but not now.

RavenCajun, I do think it's just part of the illness. When I read on other websites about people with similar conditions, I see the same thing over and over. I'm grateful I have been able to continue working. I ran through my savings in the years when I had sarcoid and couldn't work much, and I don't think I could survive another extended time off work. At least not without losing my house.

I don't have much advice except to add that my best friend has some sort of adrenal insufficiency and she just told me that she went and bought some sort of supplement from a vitamin/supplement store that has changed her life. I don't know the name but she said it's a product made from cows (bovine adrenal something or other)...which weirded her out at first but she feels so good she doesn't care anymore, haha. She said she hasn't had any of her normal problems including the fatigue and irregular (racing) heartbeat. Might be worth looking into.

I'm so sorry! And here I was feeling sorry for myself doing the Go-Litely routine before a colonoscopy and polyp removal tomorrow morning. Gah! (Hope the oxygen might help...?)

I have no answers for you Joann-but I can tell you that you described me too-the only difference between us is that I am not a lawyer-for that matter,not working-can't.

I did treatments with St.Mikes hosp in Toronto for years-for the adrenal business

Now,something new,who knows what,has cropped up-the fatigue is killing me too

To feel good just 2 "full" days a wk would be really nice

If u find "the cure" by all means,let me know too

glad you're happy with your doctors, JoAnn, but your doctor did tell you to expect (accept/live with) a constant level of fatigue.

Hi Joann
I have a few autoimmune conditions that I have had for a better part of my life. Two years ago I was in a state where I had to sleep 14-16 hours a day, I couldn't lift anything, my joint pain was unbearable, I had pain throughout my body that felt like flu symptoms. Do you want me to email you? It's a huge process I went through (a natural one) and it would be a lengthy post so if you are interested I can send you a message if not, I won't bother to type it all out. All I can say now is that I have no fatigue, so much energy and don't feel that sense of doom anymore.

Wow that sounds like a miracle, I know I would love to know about it and if is something I could benefit from if you are interested in sharing.

Well, I will just post. I have had arthritis for the past twenty years but after my last child my immune system just failed on me. I was reacting the medications I was taking and because they are on the strong side I had to go for blood testing every month to make sure my liver and kidneys were handling it. Between that and the reactions I really started to get scared about moving up to the stronger and newer ones. My sister started radical health moves the other year and I didn't really believe in it but kept an open mind. Well, two years ago was the worst time in my life. I just turned 40 could barely move my legs, I couldn't close my hands, my whole body ached, I had rashes and having a 1 yr old I was a mess. My medications were causing nosebleeds and excessive bleeding so I started checking out natural options which brought me to food intolerances and supplements. I just researched and researched and tried different options such as an elimination diet (which is my biggest life saver) and looking up supplements that help with inflammation which led me to healing your gut, hormone support (through diet and lifestyle) and so much more. On the elimination diet it literally look 10 days to feel a vast improvement. I think it would be impossible to live that way but you play around and learn what your body can handle. I have been doing this for two years now and still don't fully have all my triggers but I am off medication. I have psoriasis, arthritis, Sjorgens, Reynauds and poor circulation and now I have a little bit of dry skin, occasional joint inflammation (but no pain) and all other symptoms of the other syndromes have cleared. My Rheumatologist never heard of such a thing but at least encourages me to keep it up. I wish doctors believed in the power of food and what it does for your body. I mean, look at all the medications that react with foods - grapefruit with cholesterol, spinach with blood thinners. Food is more powerful than we realize. I have trained myself to use food to nourish my body instead of just to eat. Trust me I love food, I love to experiment, cook from scratch, challenge myself with it. Everything. Actually, a lady in the kitchen forum helped me out and I am so thankful that she let me call her that day to say "yes, food can do that you, it happened to me". It has been my lifesaver in all honestly so again, thank you Compumom. So, my personal program is no gluten, dairy, soy, tomatoes, peanuts, grapefruit,sulphites, excessive fruit, low carb (but not carb free), but with lots of greens, wild meats, vegetables free range eggs, whole grains (quinoa, rice, millet, amaranth, wheat free oats), and I take vitamin d, msm, digestive enzymes, probiotics, glucosamine and fish oil. It was a lot of hard work and still is but I remember the positives and keep at. I do fall off and get back on. I can even cheat with all of the foods I eliminated every so often but after four days of it my body starts to fall apart again. It's not a miracle just information that isn't mainstream but in my opinion, should be. Remember the father of medicine, Hippocrates - let food be thy medicine. BTW, didn't proofread so sorry for grammar, spelling and the like.

Count me in, too, Cookie. I'd be very interested.

I've had fibromyalgia (FMS) since the 1980s, along with severe Raynaud's. Back then I was diagnosed with lupus on the basis of the Raynaud's + bloodwork, but later a different doctor said nothing showed in my blood. That was about 10 years ago. For a long time my FMS would have flares and remissions. In remission, I could exercise and feel normal (for me). In flares, I could barely move. And my brain fog was just as bad.

These days I hardly notice the flares because I'm have so much other pain: back, hip, shoulder, and--to a lesser extent--the rest of my joints. The shoulder was injured, and the hip is a skeletal problem, but I suspect autoimmune issues are responsible for the rest. Pain is exhausting. And yeah, I still get brain fog--I've got it today, but not yesterday. I used to wonder what caused my bad days. Now I find myself wondering what caused my good days.

I think there's a large emotional component (as well as a dietary one) in autoimmune illnesses. In my case I've experienced a lot of trauma and grief in my life, and I think it's possible this emotional pain manifests as physical pain. I recently invested $500 in acupuncture treatments. The results were remarkable (not always in a good way), but temporary. I remain interested, but I can't afford to continue.

Joann, I can recommend juicing. For a few months I juiced every morning, making one pint of juice from greens (kale and/or romaine), organic carrots, celery, beets, organic apple, and a piece of ginger. The difference in my energy levels was dramatic. I had so much more energy and stamina, especially in the afternoon.

I stopped juicing for awhile because so much raw juice, all at once (I drank it first thing in the morning) aggravated my digestion (probably because I have gall bladder/bile duct issues). But I'm going to start again, making just one cup this time. I really miss it.

One caution, though. I discovered that putting too many beets into the juice burned my throat. This was scary (until I discovered what it was) and lasted a long time. For my one pint of juice, two very small baby beets were sufficient.

Vitamin D was mentioned above. Good idea, and (this is so individual) I feel better if I take one or two B-50's a day, and I know I need supplemental magnesium. Also drink water.

There was something else, and when I remember it I'll let you know. :-)

Thanks for taking the time to share with us. You and I are very similar, I have two of the same conditions plus a few more auto immune conditions. I have sjogrens and Rheumatoid arthritis, I also have a skin condition but not psoriasis.
Were you taking Methotrexate too?
I have long thought food allergies and sensitivity played a role.?
My husband and I at one point in time both went on the South Beach diet, in phase 1 you stop eating almost every thing, well a lot of stuff. I stayed on that phase for months. I saw some serious changes happening. I have asthma and kept a sinus infection and would get sick very easily, but that all changed after being on the diet for a while. My family doctor was amazed. In fact I still to this day rarely have asthma symptoms, my inhaler only gets used when I am sick with a cold and it helps me breathe better.
I just couldn't realistically stay on phase one forever. But from that I definitely deduced I had food sensitivity I had been unaware of. I think gluten is one for sure. And likely white flour, and white breads.

Do you have a suggestion for where to start the search for research and information? You are way ahead in this so guidance of any kind is appreciated.

Thanks again. I didn't know if anyone else here had sjogrens, it's definitely not fun I was totally unable to walk for quite a while, luckily it's much better than it was then but I still have to use my wheelchair if I will be on my feet much. The dry mouth is awful, I am never without water.
Are you on any of the sjogrens forums?

I agree for the most part with Cookie. Diet is unbelievably underplayed as a component to most health issues. I do believe if people ate properly, most health issues would be eliminated. The right foods are so healing. Take a look at history - scurvy, a typically fatal disease, is treated with some vitamin C. Nature knows how to care for our bodies if we just have the discipline to listen. Most people would rather eat what they want and pop a pill instead. Whether you believe in creation or evolution or alien transplantation, it makes sense that our world would have everything we need to support good health, and it's not found in a factory or laboratory.

By eating properly I don't mean a couple vegetables a day and watching the carbs. It means pounds and pounds of fresh fruits and vegetables every day, no dairy, no sugar, some whole grains but not too many, and legumes, nuts and seeds. I personally don't think meat is healthy but that's an individual choice.

We've been brainwashed from infancy to need meat 3 times a day, to drink milk with every meal, to eat yogurt and cottage cheese if we want to lose weight and not break our bones. It's plastered all over the school cafeterias. A huge percentage of people are "lactose intolerant" and instead of realizing maybe the human body is only designed for human milk in infancy, not cow milk in adulthood. But instead there's a variety of different medications that help the body ignore what it's ingesting instead of listening to the signs. When your body doesn't want something, it lets you know. It's a defense mechanism to keep us healthy and we are so convinced that dairy is healthy that we would rather pop pills to deal with the lactose than to think maybe it's not what we should be eating.

Try cutting out the dairy for a week or two. I bet you'll feel a big difference. It's very mucus-forming and can inhibit breathing even if you think you don't have any problems with congestion. You'll realize just how congested you've been once you can breathe clearly. It's energizing.

Try aiming for 75% raw fruits and vegetables for your diet. Juicing, like alisande mentioned, is a good way to do that. Smoothies with fruit and spinach are also good ways.

Most people's idea of a healthy diet isn't really that healthy, imo. It's really, really difficult to eat so cleanly but I believe it's worth it.

Btw I'm not talking about anyone in particular here, just generalizations based on behavior I have noticed everywhere.

Oh for sure but I do eat meats such as lamb and grass pastured beef. It's not every day either. There is so much food we don't even acknowledge - seeds, fermented vegetables, sprouted grains, coconut oil, pastured free range meat/poultry/eggs. My mother has the same ailments as me and is finely willing to try. I know she is overwhelmed so I am going to do my best to make a plan for her for Christmas (with meal ideas and recipes). Raven or anyone, I can e-mail you a copy when I get a chance. I believe we are very individual and ones self has to do all the work to find what your body is accepting and reacting to. At the beginning I tried many anti inflammation diets - paleo (too much protein affected me such as chicken, pork, trout, sardines) vegetarian (many legumes affected me such as lentils, green split peas, kidney beans). I wanted to give up but kept at it. Keeping my food limited with the elimination diet at the beginning really helped a lot. And a food diary. At first I just wrote down food but then I started writing everything - any symptom the time it happened, how long after eating and after what. I would then test those foods individually. It really is a lot of work but so worth it. I know it sounds crazy and unbelievable but I really just want to help out anyone I can. It's such a fulfilling process. Here is an elimination diet attached. There are many on the web to research - others to look at are repairing the gut, autoimmune disease and diet, naturopathy for (name your condition), balancing hormones naturally. Yes, it's overwhelming but only at the beginning because it's different.

Here is a link that might be useful: http://www.precisionnutrition.com/elimination-diet

Very interesting stuff about nutrition - thanks for posting, Cookie8. I have tried eliminating foods for several weeks at a time - dairy, wheat, sugar, caffeine (not a food, I know) - and have never noticed any difference at all in how I feel. How long does it take? For those of you who noticed a difference when eliminating foods, did you suspect anything before? Digestion problems, or something else? If not, what made you try eliminating foods?

The juicing idea is interesting, Susan. I have some friends who do that. You're basically using food as medicine, right? The quantities seem to be much higher than anyone would include in a "regular" diet. How do you know which foods to combine? Is it palatable?

Do you all discuss this stuff with your doctors? What do they think about it? How do these natural treatments work with traditional treatments? I can't imagine I'll ever be able to cut out synthetic hormones. Before synthetic cortisol, people with Addison's disease invariably died. (I had four addisonian crises before I was diagnosed and nearly died during three of them, so I'd never take a chance of going without steroids again.)

Btw, Susan and Ravencajun, I have Sjogren's, too. I was diagnosed after an acute case of iritus where my eye was so dry and inflamed that the cornea stuck to the pupil. I spent two hours at the opthamologist's office, getting pupil dilators at regular intervals to try to break the cornea's hold. Little bits of the cornea would break free and the pupil at that point would dilate, so my pupil ended up looking small and round but with protruding "fingers". Really weird. Thank God it worked - they were worried I'd lose my eyesight in that eye.

Do you get plaque on your front teeth from the dry mouth? Like you, Susan, I am never without water, but it never seems to be enough! And the nasal dryness in the winter is awful. I have bottles of saline spray all around the house.

One thing that has definitely helped me is regular exercise. It doesn't make me less exhausted, but I am much stronger, so I can often push through despite the fatigue.

I find most doctors in the US don't pay much attention to nutrition. I've had several refer me to nutritionists when I ask questions but that's as far as it goes. Western medicine has evolved to a pill-popping culture and the correlation between health and diet is largely ignored unless it's blatantly obvious like a dozen-donuts-a-day sort of thing. I've had to learn everything I know from self-research and just applying some common sense. Just thinking about the natural order of the world makes it much more intuitive. I think about how we would eat before things like supermarkets and processed food. We'd plant, and pick, and gather our food.

I went to my doctor recently about anxiety and asked if there were any things I could do naturally to help, like yoga or diet changes or anything and she said the only thing that would help is medication and prescribed me 3 different ones to take together. I don't take them.

Good grief, Chi83 - that's awful! I don't know as much as I'd like about diet changes, but certainly yoga, or any exercise, should have a beneficial effect. The current research shows that regular exercise is as effective as medicine for mild-to-moderate depression, I know.

And to start you with three pills the first time you come in?

That's what I thought but I suppose it's easier to write a prescription than to try to really figure out a problem. I know doctors have a hard time of it sometimes between insurance companies, regulations, malpractice fears and patient quotas so that's why I don't think we should rely totally on them when it comes to our health. No one will have much interest in the quality of our health as ourselves.

I also complained of chest pains and she literally waved her hand at me and said "it's just anxiety" without asking any other questions or examining me! I'm trying to find a new one.

The quantities seem to be much higher than anyone would include in a "regular" diet. How do you know which foods to combine? Is it palatable?

Yes, in order to make one pint of juice I used a dinner plate heaped with vegetables. That's one of the great things about juicing; you can consume more vegetables than you could comfortably eat. I own a book with loads of juicing recipes, but I started with the combination served at my health food store, and stuck with that. I honestly think it's delicious.

Cookie, thanks for the link. That looks like a great website. Like Joann, I've done some experiments with food and identified some things I shouldn't eat (in my case sugar, asparagus, dairy, and anything containing solanine--potatoes, eggplant, tomatoes, peppers, artichokes, okra, and blueberries). I also tried eliminating wheat and didn't notice any improvement in how I felt. But a true elimination diet sounds like the way to go. Somehow I suspect December is not the best time to go on it, however. LOL

The one dairy food I exempted is yogurt, and I eat it every day. I'm thinking this was probably not a good idea. As the website says, perhaps I've come to react to it because I eat it so often.

Chi83, I couldn't agree more. The dependency on pharmaceuticals really is a shame. So is the lack of interest in diet and wellness practices--although exercise does seem to be prescribed. I recently had an appointment with a cardiologist--a very nice, thoughtful physician who spent some time with me. But I was disappointed in the questionnaire his office had me fill out beforehand, which asked no in-depth questions and didn't even mention diet. I could have been eating nothing but pork rinds for all he knew. If heart doctors don't care about their patients' diets, who does?

I think they know that most people aren't going to listen anyway. If you tell 100 people to give up meat, dairy, wheat, sugar and processed foods, how many do you think would actually do it? I'd bet not many. A lot of people are very defensive about their eating habits too so I doubt doctors want to engage in that sort of battle. I'd bet most people claim to eat healthy but there's a lot of self-delusion out there!

Juicing is great for the reasons alisande mentioned. I am not a pulp lover so I always strain my juices through a nut milk bag to get any remaining pieces of fiber, especially for green drinks. Some of my favorites are carrot/apple and pineapple. I really like a green drink with kale, cucumber, spinach, parsley, lemon, apples and ginger. It sounds much scarier than it is. :) The Whole Foods near my house has a juice bar where you can order what you want, or you can bring things in and they will juice them for you for a $1.50.

You know, in 2002, I had (I later found) dilated cardiopathy (caused, yet again, by the sarcoid. That was *scary* bad.) I went into V-Tach at home (we surmise from what happened later), and my sister called an ambulance. By the time they got there, I was on the front porch, not in cardiac distress but trying to get air.

The guys on the ambulance said it was a panic attack. My sister explained that I never get panic attacks, and that it was almost midnight and I was lying on the sofa with a baby on my chest, not the most panic-inducing of situations. They didn't listen, didn't even attach a cardiac monitor.

I was taken to the hospital, which is close, and about 10 minutes after I arrived, I had another episode of V-Tach. Felt like I was sinking into a black hole, and lost consciousness. They spent hours with me in the ER trying to stabilize me before moving me to the CCU.

During this time, the ambulance drivers came in, all sheepish, to apologize for not having taken me seriously. I hope they learned something from that experience.

Wow, Joann, I'll bet they never made that mistake again!

Chi83, your doctor sounds like she might have gone to med school with a cardiologist I saw about 25 years ago. I was having a bout of irregular heartbeats. He ordered a basic treadmill stress test. When he saw me again to tell me the test results were normal, he opened a drawer and said, "Take your pick." The drawer was filled with drug samples: Halcion, Xanax, etc. I didn't pick.

He's still practicing, BTW.

I agree with you guys all the way. Pharmaceuticals reign and healthy eating isn't promoted by doctors nearly as much as it should be. I recently saw a doctor for the first time after my long time doctor left, and this new guy was busy typing on his little gadget, never inquiring about my life style.

I have fibromyalgia , Raynauds, and anxiety. I haven't had meat in 30 years. I stopped for humanitarian reasons and am glad I did . The smell of meat cooking makes me nauseous and I literally could not eat a piece of meat without throwing up. I DO eat 1/2 pound of salmon a week and two pieces of chicken. My diet is so basic, it's boring. I have a big soup bowl of fruit for brunch...at least six ,always blueberries, Blackberries, raspberries, watermelon, grapes and cherries. I have a panini made with a deeply grained bread and includes an egg, mozzarella cheese, avocado, walnuts, and cranberries. For dinner I have brown rice, asparagus, green beans, broccoli, cauliflower or squash. I rarely have dessert but if I do it's a scoop of icecream. Since I eat almost all my lunches at home, this diet is easy for me. I eat no prepared foods , no soda or fast food. It takes discipline but it pays off. If I fall off this schedule, I pay. Husband and I shared a cheesecake at a restaurant for his birthday dinner and I felt bad for a day or two.

But I realize working women have a more difficult time getting fresh fruit and veggies unless they pack their lunches. My daughter always packs and for her son too because she didn't want him eating the school lunches.