Tired all the time

I am a newly diagnosed patient and I am soooooo tired all the time, I think all the itching I am doing is keeping me awake. What can I do for tiredness.

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Dear Infusion,

May I ask what you were diagnosed with, because there are different types of scleroderma. Is yours CREST, because I have CREST and I had a high ANA Titer with Anticentromere shape. Fatigue was one of my first symptoms about 10 years ago. At first I thought it was Menopause and or my hectic life with working and caring for two chronically ill parents. Thats when I started getting test and blood work done. My understanding of my disease is that my immune system is overactive and that my body is a foreign invader so my immune system is trying to fight it off. Over the years I have found for the fatigue is to take a calcium -magnesium supplement near bedtime. This helps to relax my muscles. You will need to ask your Dr. if that ok to take. Also in the past I was given amitriptiline(not sure of the spelling) which is an anti-depressant) This can also help you relax but I think its mainly for short term use. You might ask your Dr. about this. For the itching, it depends on what is causing it. If your skin is dry, you can try oatmeal and shea butter bath soap. If its internal it could be allergys or Raynauds Syndrome which effects your circulation and can cause chills and itching. Please let us know more about other symptoms you are having so we can better share our experiences with you. I know illness can be very overwhelming, but I hope you can find support through this websight and through friends and family. I welcome your entrys and will help if I can. Wishing you the best. Hope to hear from you soon.

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Fatigue is part of the disease. Sometimes its better and its different for everyone. I am tired most of the time. This has been going on for 4 years now.

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I Have CREST, Swollen feet and hands. I was diagnosted thru my dermatologist for the skin rash and discolorarion all over my body it was a shock to see myself in the mirror which i covered it up so I willnot see myself. I was referred to my pcp for blood work study which confirmed all. I have read so much with this web-site it is unbeleiveable. Is ther a book on this?

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For fatigue I would reccommend vitamin b-12. Before I was on a high dose of prednisone (which has me wired all the time now) I was taking and still am taking b12 and I feel that really helped give me more energy in a natural way and just made me feel better. of course ask your doc if that's ok, it usually isn't a problem and doesn't interact with anything else. And if you can get to working out in any way, evening walks, water aerobics, it actually helps, though I know it's hard, but it helps relax us too and get better nights sleep.

To my knowledge, there are no books, but check the scleroderma.org website. :) good luck!

Jas

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I take a sleeping pill on nights when I feel I really need a good night sleep without waking up on and off all night. I take tamazapam, the lower dosage (it comes in 15 and 30). It doesn't leave you with a hangover in the morning and really just helps me to stay asleep. I have another problem in that my right eye doesn't close all the way (due to unrelated facial paralysis) and it really does help me stay asleep.

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I have been diagnosed with systemic scleroderma and the medication that has helped my fatigue is Plauqenil. It took about 6 weeks before "it kicked in" though. Hope you feel better soon.

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Dear Infusion,
As you'll learn, there are MANY factors that can cause fatigue...or overwhelming exhaustion. As I-Care mentioned, for the different factors, there are different meds you can take that might help. Keep in mind, though, that any autoimmune disease brings tiredness. Do let us know what your diagnosis is. Also, often the side effects from the symptoms and meds. change. What you felt 6 months ago might be very different from what you're feeling now. Meds are often trial and error. I hope you will agree that keeping in touch with those on this message board will help you feel less alone. It's done that for me.

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Auto immune and fatigue are synonyms. Also are you on new meds? i found that my meds had a lot to do with causing overwhelming fatigue and they were not meds that listed it as a side effect.

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Sorry you've had to join our not so little band. Fatigue is a part of auto immune diseases. As you can see from the replies many different approaches work for different people. It's largely trial and error as so much can effect what works for you. Have you been tested for hypothyroidism? Please ask your dr. to do it. And if it's only borderline ask for medication anyway. Nobody listened before but my present dr. gave me the lowest possible dose of Levo (sorry, can't remember the name or dosage and too tired (!) to go look.
I know you were hoping for a quick fix but, you'll learn with this disease there isn't one.
I hope you subsribe to Scleroderma Voice, it's and excellent magazine. Do go on line to www. Scleroderma. org, there's a wealth of information there.
Good luck and welcome to the club.
spiritlove

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One of my first diagnosis' was chronic fatigue syndrome and fibromyalgia. I think the doctors sort of scratch their heads when they don't know what is wrong with us so they give us that label.

I give myself a Vitamin B-12 shot every week and when I am really worn down I will do a series of shots for 7 days. I thought I would never be able to do the shots but when you can't get out of bed because you are so tired, you soon can jab any needle in you.

Recently I was tested for vitamin D and my numbers were so low. Now I take a prescription strength vit. D everyweek and spend 15 minutes in the morning and 15 minutes in the early evening in the sun. Never direct hot sun but just enough to help increase the vit D on a natural level.

My psychiatrist added a prescription strength Folate Acid (Delphin) to my list as it helps physical and mental.

At one time I was on so many vitamins and herbs it got to where I just couldn't swollow another pill. Now I am just down to the most important more managable vitamins. Doctors have instructed me instead of taking a large dose in the morning to taking a lower dose morning and night therefore you don't have all of those extra vitamins that just past through you as urine. Chewable multi vitamins (Centrum) work well for me also.

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This seems to be a common complaint with this disease. Between the terrible muscle pain and the fatigue these are the two of my worst complaints. I also have the gerd issues and the lung involvement but this fatigue is unbelievable. I just had my apt with my rheumy and he said unfortunately this is one area of the disease they just don't have anything to combat it with. He too said he hears this from all of his patients and there's just no easy answer. So every day between Noon and 1:00 I hit my wall as I call it and I give in and lay down and take a nap. I can't fight it as it's so bad that I yawn and can hardly stay awake. I thank God every day that I was able to get disability as there is no way I could hold down a job.

warm hugs,
Peggy

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I have recently been diagnosed with Scleraderma, for years I could not find a doctor to make a clear diagnosis other than my problem was caused by an interconnecting tissues of the skin disease, I have thickening skin, have had congestive heart failure, been diagnosed with diabetes, neuropathy in my feet or no feeling only occasionally tingling or a burning sensation, I have been told I have diminished lung breathing capacity, Asthma, also COPD, I have high bllod pressure, I was told I have a severe case of scleraderma.I previously suffered a mild heart attack, also a mild stroke, I was grossly over weight and could not seem to lose weight, suddenly I have lost 21 pounds in the last two weeksand hope to lose more if I can, I have a tired feeling and shortness of breath which has been limiting my activities somewhat,however I am still trying to keep active as much as I can.

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Make sure your iron levels are normal. When I became anemic my fatigue hit another level.

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Peggy59, the muscle pain and fatigue are sure exhausting. (It's the ol' "tired of being tired.) LOL, my nap time is 3:30-5:00pm. Also, I don't know about you, but UGH! the itching! I just increased Zaditen from 6mg to 8mg/day. So far it's not helping. The itching keeps me up at night even with Lunesta.

Through it all, I'm happy to greet each day, no matter what time I awake.

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