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Clementine

Fatigue

26 posts in this topic

Does anyone know what on earth causes fatigue with sclero? Why does it make us so tired? I wonder what it's like to feel really good. I am tired when I get up. The only time I think I feel good is after two cups of coffee, and even that wears of soon and I just want to lie around.

Jen

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I am going to join the band wagon here, and probably everyone else! My goodness it takes me to 4pm in the afternoon to feel not to tired.........and bless coffee, it also takes me 2 cups to feel any better!

 

Irene

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Jen,

I wish I knew. I am exhausted all of the time. People that don't know this kind of exhaustion don't understand it.

Nan

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Hi Jennifer ,

 

Gareth sat around all day in his recliner and did absolutely NOTHING!!! No TV, no reading, no music, no church......nothing. He had a nap from 3-4:30 and went to bed at 7:15. Is that the kind of fatigue you are talking about? I just read where Sweet said she was put on Plaquenil for fatigue. Maybe I should ask G's doctor about that. I asked him all day if he hurt or if he was sick and he would say 'no.'

 

Take care, Everyone.

Margaret

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Yes, I know people don't usually get it. Apparently my husband is one of those people. Today, he asked me sarcastically if I ever felt good. I had to remind him that A) I had sclero and B) was on long term oxygen. Just when you think there is ONE person (other than you guys) that won't condemn you for complaining you get reamed. It will pass. I am sure he is just tired of hearing me nag and I can't blame him.

 

Not only am I sleepy tired, my body is tired. I am really sick of it. I take Iron and I eat healthful foods. It's got to be the sclero. I don't even work. I cannot imagine working and feeling this way on top of it.

 

Guess I was due for a proper venting session.

Thanks

Jen

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Jen,

Do you think you could be anemic? Well, I guess not if you are on iron. Also, have you ever checked your thyroid? Unfortunately, I think it is probably the scleroderma. I tend to think it is because we are in so much pain that our bodies are exhausted. I don't work either and I don't know how people do it. I take at least a two hour nap each day. Take care!

Nan

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Jennifer, I am also tired ALL the time. No one in my family seems to "get it". There are days that I can barely get out of bed, forget fixing the hair and makeup. My husband seemed to get tired of my complaining so now I try to just keep my mouth shut and deal the best I can. I'm glad I'm not the only one who feels this way, I started to think I was just being lazy.

 

Sherion

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So does anyone know why scleroderma causes such fatigue? I have been shocked that even just with CREST syndrome there are so many more symptoms than the Acronyms. My RH says you just have CREST and he checks my hands and feet for further progression and asks if my skin is hardening anywhere? That's about it. He has never mentioned anything about meds for fatigue, does plaquenil really work and what are the side effects?

 

Beverly

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My hubby always says I should be tired. There's a lot going on in my body, it's all messed up and then with the meds. It's a lot for one body to process. And then, mentally and emotionally its also draining - which we all know.

 

I tell him its okay for me to rest alot. Its less time for me to think of things to add things to his "honey do" list.

 

peanut.


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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I think like everyone here I also have extreme fatigue most of the time. Have had it for 10 years since I first succumbed to scleroderma.

 

I went looking for reasons on the Internet, and quite frankly there doesn't seem to be a specific reason for the fatigue which goes with scleroderma, or indeed any autoimmune disease. I must say it has always puzzled me too, and certainly without the fatigue we could certainly feel a bit more *normal*!

 

Here's two webpages to read about fatigue:

 

ABC of Psychological Medicine: Fatigue from PubMed Central.

 

In this page they say:

 

Medical conditions that may present with apparently unexplained fatigue

 

* General—Anemia, chronic infection, autoimmune disease, cancer

* Endocrine disease—Diabetes, hypothyroidism, hypoadrenalism

* Sleep disorders—Obstructive sleep apnea and other sleep disorders

* Neuromuscular—Myositis, multiple sclerosis

* Gastrointestinal—Liver disease

* Cardiovascular—Chronic heart disease

* Respiratory—Chronic lung disease

 

So I guess we all have quite a few to choose from there, though I would probably choose the broad spectrum "autoimmune disease". This page has a considerable amount of reading, but I don't know if a great deal will be of any great help.

 

Another website: Medline on Fatigue says:

 

Fatigue can also accompany the following illnesses:

 

* Infection, especially one that takes a long time to recover from or treat.

* Congestive heart failure

* Diabetes

* Chronic liver or kidney disease

* Addison's disease

* Anorexia or other eating disorders

* Arthritis, including juvenile rheumatoid arthritis, which affects children and teens

* Autoimmune diseases such as lupus

* Malnutrition

* Cancer

 

Guess we'll have to stick with our coffee, though for me, I don't like coffee much! <sigh>

 

Warm hugs,

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Hi Jen,

Well I just have to be added to the fatigue club!!! I had a crazy idea that when our body was trying to heal itself, we in turn became fatigued. I read that the skin can regenerate itself, and that has to take an enormous amount of energy from us when this is happening. I am not sure that this "medically" correct, but just something that makes a little sence to me. When I am fatigued, i just go with it in hopes that I am fighting what ailes me.


*WestCoast*

 

********

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Hi Jen,

 

Have you been more fatigued since you moved to the mile high city? Or does that not make any difference if you're on oxygen? It was just a thought.

 

Fatigue is SO frustrating! Especially when you have loads to get done. Then it can be depressing too.

 

Take care and hang in there. Hope you kick fatigue's "petunia" as my 4 year old says. :)

 

Love, Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Jen,

In the middle of the night I thought of your move. Just like Barefut I am wondering if fatigue started after the move to high altitude. Just a thought.

take care,

Nan

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Your right barefut fatigue is frustrating. I have fallen asleep at work and not even known it so I take naps in my car during lunch time, but I have to be careful not to sleep through lunch too.

 

I feel like everything takes an enormous amount of energy. I think I'm good for maybe six hours on a good day then my body tapers off.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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A good day for me is being able to walk to the bathroom, shower and dress myself. After that, who knows! It's like your whole body just wants to shut down. Brushing my teeth is a chore too. Guess living with Sclero is accepting the fact that there is nothing you can do to predict the course. Fatigue is something that all of us deal with at one time or another.

 

I cannot imagine having to work, my husband is so supportive. I'm very lucky that way. My doctor had me on Plaquenil and then took me off of it, so I can't say that it helped. The good thing is everyone is different, and it might work for you!

 

Take the time to rest and don't fight it. You deserve it!

 

TJ

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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.

 

xo

Jennifer

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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,

Heidi

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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,

Margaret

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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?

 

-RTS

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Hi RTS,

 

I take 200mg daily of the Plaquenil.

 

Warm wishes,

Heidi

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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


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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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 .

 

 

Thanks

Sammie

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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.

CONNIE

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