Things to avoid

Hey folks. I have not always been great at it, but I am starting to phase out certain things that I need to avoid (gave up drinking, caffeine, and I'm going on the patch). Are there things that should ABSOLUTELY be avoided? As in "do this once and you're dead?"

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For reference, mine is Systemic Sclerosis.

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Well, we wouldn't be able to help you if there were "do once and you're dead" things, as we wouldn't be here to tell you. ;)
It's hard to say because everyone seems to have many different sensitivites even if we have the same diagnosis. It concerns me that you are still smoking. I guess if I were to put one thing on the 100% absolutely NEVER ever do list, it would be smoking. But very happy to hear you are going to quit. Just do it ASAP. There is no better way to put yourself into a flare up than smoking. Not only is it awful for your lung health, I would assume you have Raynauds and smoking is the worst thing for it besides the cold. For me and many others, gluten is on my avoid list as well. I cut it out about 5 months ago and would have it once in awhile. I am finding now that I can't even tolerate it once in a while. It is painful and misery for my GI tract and I'm afraid it may be damaging as well. I watch sugar and salt also.

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Pay attention to your blood pressure. Measure it at home. Educate yourself on renal crisis in scleroderma patients so that if it happens to you, you can tell the ER exactly how to handle it to save your kidneys.

Wonderful that you are quitting smoking, it could just save your life.

Do not become to dependent on pain killers, it can suck the quality out of your life.

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this is what I wrote to a friend yesterday :

The life changes :
Food: eating healthy ( no lactose.no gluten, no chemicals).....eating small portions ,not eating when not hungry , not eating before sleep.
Sleep : get /or try 8 hours sleep ...sleep effects our muscles ,bones , energy levels ...go to sleep early at night and get up early in the morning
if possible (hard for me too) avoid T.V or PC before sleep .
a good pillow supporting the neck and a good firm mattress , and yes ...hard but try as much as possible keep bed room dust free (it has to do with good breathing ,at night ) if possible keep the room aired ( some buy an ionizer )
Exercise : movement utmost important first thing in the morning to maintain the joints stiffness , the swelling in check ,keeps the mood up . Keep to excesses kind to the body ,never try to over do ... Chi Gong and Tai Chi or Yoga have balanced movements . Facial movements are good too.
Dentist: I started quite late ,but very important to have a good maintained mouth ,and try get rid of all the Mercury fillings
Friends : Keep only positive people around you . Stay away from negative people ....It's better to have one or two understanding mates than a huge crowd that one have to adhere to their ways of life ....For example people who smoke next to you .... Cigarette smoke is not good for the lungs .....stay away ....if any of you smoke ..first priority is to stop ... It is very bad for the circulation and the lungs .
Stay away from sick people ,like the flu or stay away from visiting people in hospitals ( they will understand if you tell them why)

Media/Entertainment : If you can ,DO NOT watch the news ! watch comedies, do what ever makes you and the rest of the family happy .....children always give good energy , play like children , do projects with them . Get fresh air on free days .
Body maintenance : try never to get cold , wear layers of cloths , use hats , gloves , sun glasses ...stop when tired ...do not push on , take a break then go on ..
use oils or natural creams on hands ,feet , face .......change soap and shampoo to natural ones (no chemicals inside)

Help: get self help books ,or relaxing CD's , a mild body massage once in a while ,or any other hands on treatment .

Creative: do anything that pleases you ,or any hobby that is not too rough ....

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Awesome, thank you for the tips! And I'm way ahead of you on avoiding painkillers. I have "colorful" past and, long story short, I avoid any kind of opiate like the plague. Not because I don't like opiates. On the contrary, I avoid them because I LOVE them, if you catch my meaning.

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good , then more the reason to try "clear up" cleanse your body and life to beat this thing .Good luck ...

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Sheleg, Then what do you eat, besides the obvious?

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Fruits and vegetables?

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I have some REALLY negative opinions about artificial sugars ESPECIALLY with "diet soda". MY OPINION: if you want a true diet drink, then drink water.

EVERY artificial sugar has more warnings on it than a fire truck headed to a three alarm fire. Carcinogen, mood altering, etc.

I personally can’t drink or eat anything with NutraSweet in it as it changes my “sunny” disposition to a nasty dark side of me that isn’t pretty.


I also believe in “everything in moderation”. Diabetes (like scleroderma) is another disease that there is no known cure for. I have type II diabetes which is a PITA when it comes to what to eat and what to avoid. I would rather have one REAL dark chocolate caramel candy than a whole bag full of artificially flavored ones. EVEYTHING IN MODERATION.

It has also been found that eating several small meals throughout the day is FAR better than eating three HUGE meals. Small meals give your digestive track time to break down what you eat rather tying to break down a HUGE lump of food three times day.

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I am having a totally hard time giving up these things, smoking drinking etc.... Does anyone think therapy would help. I feel like I have a loaded gun with this disease and I am pushing the limits... Why??

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Well just think about your quality of life if you don't give up these things. That would do it for me. Having to be housebound in a bed would be horrible and depending on everybody else.
I avoid all sugar and use Stevia for a sweetner or raw honey. I eat mostly organic and have cut out pretty much all dairy.
I do yoga faithfully and I am not flexible but it is so good to stretch your skin and joints..it's also good for your mind, body and soul.
I drink a lot of Green Tea after giving up coffee. I also gave up wine :( because it was too acidic.
I think we all need to learn our own bodies and what they can handle. I have had what I though was systemic sclero for 18 years and just found out last Friday that I had diffuse the entire time! It was the first time i went to a Scleroderma specialist instead of my rheumy. He said I dodged a lot of bullets and that when you have diffuse it takes its course in its first 3-5 years and then you just have to deal with the damage it has left behind, like my digital ulcers i get sometimes, my acid reflux sometimes and digestive issues.I was so happy to hear that my lungs and heart and kidneys were fine that I wanted to jump up and hug him!!! I am now part of a research program to help others at Boston Medical. I almost feel like i need a second opinion for good news :)

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Misha01:

I'm not going to "sugar coat" my advice to you.

There is an old saying that goes: If your mother told you life would be fair or easy, she lied to you.

Quiting bad habits is not easy.

There are few working "magic pills" or cures that can help you quit a bad habit.

YOU have to make up YOUR mind that YOU want to live a heathly life.

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I was in very, very good health before I got scleroderma.

I just wanted to share my experience with caffeine.

If I have 2-3 cups of coffee in a 2 day period, I get a digital ulcer. If I don't have any caffeine, I don't get them.

Good luck!

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Hi 19589195, what I eat :

All red ,orange ,green ,root vegetables ..avoiding "night shades" (no eggplants, tomatoes,raw peppers), fish especially those that are rich in Omega 3 ,like the Halibut (twice a week at least ) , fruits ( avoid citrus fruits) but use lemon , legumes,better if they are sprouted then steamed (like lentils, chickpeas ),grains like rice,millet ,quinoa ....rice noodles, rice pasta,corn and corn pasta ,all the green herbs and leaves for salad. Eggs, some tofu , rice milk, almond milk, hazelnut milk,oat milk.
Organic dried apricots, dates , cashew , almonds, walnuts ,raisins,figs. Rice crackers, oat's bread. Drink herb teas .Use honey ,date and carob syrup . Tahini , almond paste ,flax butter, olives . Olive oil , garlic, onions. Potato flour , rice flour,corn meal ,corn flour , chickpea flour ...these are the things I can think of at the moment . I hope it gives you an idea to start with.

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I too am having the most difficult time quitting smoking. I am so nervous. No excuse, but it is just hell on my nervous system.

Are there any quite smoking programs that anyone can suggest?

Thanks all.

Margi

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How did you find a Rhuma that specializes in Scleroderma?

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Does anyone have a name, the address or telephone number for a Rhumy in Boston, Mass or anywhere in NH??????

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To all:

The research is indicating that undiagnosed celiac appears to be a culprit contributing to the body flipping that switch into scleroderma. (it makes sense because celiac is an auto immune response.) In my case both limited scleroderma, sjogrens, hypothyroidism and pre-diabetes resulted from the undiagnosed celiac. Gluten should not only be avoided, it should be eliminated. Replacing gluten is tricky because replacements over load the body with carbs and too much sugar. I opt for a diet heavy on fruits and vegetable with lean meats and no dairy. Peruse the celiac websites for great gluten free options and recipes. Most groceries are now providing gluten free products as well.

Eliminate stress. Either physical, emotional or psychological. Stress kills, it just takes too long. I miss my nicotine but I had to quit cold turkey in 1998 because I was diagnosed with adult onset asthma. I will die if I smoke again. Pretty simple choice actually.

Limited amounts of caffeine is not a deal breaker and could be somewhat helpful in moderation. Water, water and lots of water. Having secondary sjorgrens, I have a bottle of water with me at all times. Herbal and caffeine teas make great iced tea drinks. Lose the soda period. It is too acidic and actually has so many chemical in it, it is scary.

The others are correct, relax, renew and rejuvenate however you can. That can be yoga, meditation, a calming cd, a walk in the park, sitting on the beach. Whatever brings you joy and calm. Avoid high stress and you can feel it when your body is starting to react to stress.

I had to take early retirement because I am an attorney and there was no earthly way to eliminate the stress from my job. The diseases kicked into high gear i.e. flare up and it have been raging now for almost a year. We are trying prescriptions, dietary adjustments, and learning how to do nothing to bring this monster under control.

Start with examining everything that you eat or drink. Is it in its purest form? Does it contain a long list of chemical additives? Make smart choices for you. Your body is under siege and it cannot start to heal unless you eliminate those agents that are promoting the flare ups.

I wish you the best of luck. Each of us has to discover our own path to well being. Get under the care of a rhuematologist who specializes in scleroderma, sjorgrens etc. That will help you take control of this nasty business.

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Dottie - Dr. Robert Simms - Boston Medical - He is by far the best 617-638-7480 and 617-638-7460

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Dottie here's his info:http://www.bu.edu/cort/key-personnel/robert-w-simms-m-d/

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