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Thanks everyone. Sherrill, thanks a lot for the links. Nan, I am not anemic anymore and I do take two iron tabs a day. I also take Synthroid for hypothyroidism.


Barfut and Nan....come to think of it, I AM a lot more tired since I've been in Denver. It must be the combo of altitude and a new marriage. I have many more responsibilities now.


I need to be better about wearing my oxygen when I'm running errands, etc.


Isn't Plaquenil for arthritic pain? I don't have that so I do not think that's an option. Plus, I am already trying to eliminate meds.


I read a lot on Sclero and fatigue and it's a symptom, right up there with Raynauds and GERD it's just harder to understand without just feeling plain out of shape. My fatigue is not so much being sleepy as it is my body needs the relief of lying down and when I do, it's a huge relief. Make sense?


I hope Gareth is doing alright. Speaking of GAreth, where has NuttyLee been? He is a teenage guy that has sclero too.


My husband apologized and gave me a love poem. I know it's hard for him but I have not been able to let go of it yet.




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Dear All,


Although I post a reply very seldom - I read the post daily. I asked my Rhuem why am I exhausted - I've been tired for 20 years. His reply to me was, "It takes all your energy for the disease process". This really gave me insight - so I'm passing it along to you, hope it helps. JLF

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Hi Jennifer,


My understanding is that Plaquenil is a DMARD drug (a disease modifying drug...meaning it is believed to slow the process of the autoimmune disease and is used for patients with Lupus and Scleroderma). It works by decreasing internal inflammation....so definitely NOT just an arthritis drug. It helped me with my physical exhaustion ALOT (it used to be all I could do to stir the waffle batter or make the bed without having to rest in between).


Hope that helps.


Warm wishes,


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Morning Everyone,


Once again, I want to thank everyone for your honesty in expressing how you feel. I copied and e-mailed (minus names) many of the responces about fatigue to Gareth's aide, teachers, and rheumatologist. I told his rheumatologist this has been Gareth for 6 months now and I never had a clue that the fatigue could be so debilitating. His rheumatologist agreed and said t could be a major problem with sclero. Gee.....why didn't he ever say so!!! I also expressed my frustration with him that no one is taking charge of Gareth's situation.....everyone is waiting for Dr M to get back with blood results and that has been a month now. Haven't heard back from that e-mail!!! Anyways, I guess many of you have gone years without a definitive diagnosis, so I should not whine too loudly about the lack of one for Gareth the past 6 months.


Once again................thank you for helping me understand what gareth is going through.

I hope everyone has a fairly good day,


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I am always in awe of the extreme tiredness of this disease. Fortunately, I sleep well, and awaken refreshed... but then I am ready for the first nap by 9 am.


Heidi - I am glad to hear Plaquenil works so well for you. I've spoken to many with both lupus and RA who have responded well to doses less than 200 mg/day.


What dose of plaquenil is working for you?



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I am finally getting a reprieve from the extream fatigue. It seems it truly comes and goes with me. I had it for about 4 months. Then completely gone. Then I got the severe itches (rip roaring) my arms, hands and wrists. I can tell the skin is a bit thicker feeling. Then after several months it stopped. About October. Then the extreme tiredness started up again. It was gone just before holiday. I still get slightly tired and sometimes take a nap. I still can't stay awake in the car when my hubby is driving. I have had 4 months of almost painfree carefree days. In the back of my mind I am enjoying this. But, I'm getting myself prepared for the next turn of events. It usually doesn't last long. I am enjoying this quality peroid of time while it lasts. I think that Sunshine and Florida's warm weather really gave me the lift I needed. I am marking this in my book. Keeping track of the time frames that things are happening. Well, I am off to start my dressing and peel potatoes and all the lovely things a parent does when her children come for a visit. Ron and I will enjoy are day with our youngest son and his girlfriend. My oldest sons and families are either staying home or traveling to Florida to be with their wives familes. A quiet day for me. Sheryl

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Hi everyone,

I haven't ppostedon here in a long time


I, too suffer from fatigue all the time. I had to cut working down to 3 days a week because that's all the energy I have. I take thyroid meds so I know that is not it. My primary care doctor, who encouraged me to work less days, said that of course you are tired, you body is fighting a terrible disease and that takes a lot of energy. Also, a lot of the drugs I take can add to that fatigue. She says to get more rest, but don't just stop doing everything, because that would be giving in to the disease. She what I need is balance .





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Hello everyone,

I went shopping today but had to sit in the car for 40 minutes in the carpark after walking around a little bit. I also ate a hamburger because I was thinking low iron, anyway I felt great afterwards. But one thing I also did was take 5mg of a pain med. I try to take it only when I need to do things, or if I can not get out of the chair. It stops my muscles from feeling so fatigued and all the pain goes so I get moving. The down side is it is addicitve, but only a small dose is needed. Also any higher dose than my body needs makes me nauseous.


What my doctor has explained to me is we (with sclero) do not get enough REM (deep sleep) it is the same with people with fibromyalgia. A friend of mine with sclero put me onto the drug endep, which was developed as an antidepressent but works really well as a muscle relaxant, it also gives you a great sleep.

I felt 70% better for the first few months I took it, that includes the rheumatoid arthritis. The problem is your body gets used to it and I now need such a high dose that it effects my liver, and makes me tired! I am varying the dose day to day so I dont get used to it.


I have limited scler, with rheumatoid arthritis and so on, but I have really felt better. It still changes day to day, in the past week I have developed skin thickening and discoloration on my toes, and have generally felt worse.


Best wishes

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Hi, I'm new here and it's like WOW someone feels like I do! I was diagnoised with Lupus in 1991 and diagnoised with Sclero in 2005. Anyway, I have been on Plaquenil and Elavil since 1991. It helps. Before I started taking it I was so tired I I was afraid to even leave my house because I was afraid I couldn't get home. I still have to pace myself. The meds haven't taken away to fatique but they help.


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I have had such a bad week. It started great with a trip to 2 different quiltshops. I was out almost 6 hours with a friend. I was tired after that, but the next day and every day since, I am more and more exhausted. Today I felt like I would just collapse if I did not lay down and rest. I was not sleepy, but my body is just flat out tired. I couldn't move anymore until I lay down. This has never happened to me to this extent in the 6 years of having this disease. I can't even leave the house. I live alone and I am worried when I feel this awful! I am hoping it will go away if I rest enough, but everyday it is worse. I hate this disease! Lyn :( :(

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