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barefut

Total Fatigue

19 posts in this topic

Since I had to move my PFT, Pulm doctor and rheumatologist appts out from Aug 7 to Sept 18th, I just made appt with my primary care provider. Soonest I can get in is next friday.

 

For the past couple weeks I have been SO fatigued most of the time. Gonna have him check for anemia. Also tell him how I wake up feeling like I never slept.

 

I'm afraid of having to go in for sleep study for apnea.

 

Also gonna get that Rx for Prozac.

 

Also, still worried about left middle finger. Gonna call rheumatologist about that one on Monday.

 

In the meantime, anybody have any secrets or magic tricks to beat this fatigue?

 

Leaving in the morning for a one night stay at a cabin on a beautiful peaceful lake and I can't even drag my rear into gear to pack for it.

 

:(

B


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hey B,

Upping my prednisone helped my fatigue. I know it's not the favorite answer but it really does help.

 

energy, health and hugs

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hi Barefut,

 

Aside from medical treatments, which will vary depending on the cause, my favorite methods for dealing with fatigue are rest, pacing, relaxation, and simplifying. Simplifying life helps with the rest, pacing, and relaxation. I also eliminated things that drained my energy, taking even drastic measures like not watching tv anymore and replacing it with quiet time for artwork and crafts or reading, while listening to gentle beautiful music -- things that restore and refresh me.

 

It's my observation (which may be wrong, it often is) that many of the people around here who complain of fatigue the most usually have additional issues other than "just" scleroderma, such as sleep disorders or fibromyalgia or depression or additional autoimmune diseases. So your approach of letting your doctors know about it and exploring underlying treatable causes is very smart, and may eventually pay off with some increased energy.

 

The extent to which fatigue is impairing your lifestyle is the extent to which you should contemplate improvement measures. Everyone will have a different list of ways to cope, but to keep on doing the same things that are not working (such as too much stress, too little relaxation, poor diet, too many "to do's") is a sure-fire recipe for worsening health, with an already bad situation at hand.

 

At the top of my to-do list every day, I put "Rest, Refresh and Relax". That way, when fatigue is nipping at my heels, I can kick back, rest and relax a spell, and know that I am still achieving my most important goal for the day. That improved my attitude about fatigue, since fighting it mentally is also very draining...and what a rotten thing to waste precious energy on, eh?


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Shelley,

Everything you say is perfect. I wish I had my own Shelley to live with me and be my life coach!!! Thanks for always knowing the right things to say.

Jennifer

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Thanks Peanut and Shelley,

 

I recently quit making to do lists at the beginning of the day and instead started making accomplishment lists at the end of my days. It has helped reduce my feeling of being overwhelmed and made me feel good about what I DID do. Of course I still have to write myself "reminders" of important things or else I would forget a lot of pressing stuff.

 

Shelley, come to think of it I have been watching the news a lot more than usual lately and it IS draining! I turn it on to see the weather and suffer through the first 20 minutes, flipping back and forth to see which station will air the weather first before I go to bed. Dumb.

 

And you know what else? I was actually inspired to paint today and I thought of you. I truly am not an artist and have no talent at all but I still wanted to paint just to see what would come of it. But I was so drained I just laid there on the couch until I had to break up a fight between my boys - again, and then the feeling went away. I only have kids' craft paint and watercolors anyway.

 

I would SO love to up the pred and don't think it didn't cross my mind Peanut but I wouldn't do it on my own without doctor's approval.

 

I also would SO love to simplify ( I have a bumper sticker on my car that says simply, "Simplify") and I am working everyday to get to where I need to be in order to get there - am I making any sense?

 

Right now my divorcing situation is anything but simple and is turning out to be the most complicated divorce amongst anyone in my divorce support group. So I'm guessing it will be awhile before I can enjoy a simple life.

 

I am hoping this weekend at the lake will infuse me with some energy.

 

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hi Barefut,

 

So sorry you're having such a tough time with fatigue. This is one of my symptoms also. I could sleep 24 hours a day, but instead, I do a lot of the things Shelly suggested, mainly pacing myself.

 

Last week I took my daughter shopping. We went to three stores and I was beat.

I told her we had to go because I only had enough energy left to drive home. I felt bad but I knew my limitations.

 

Simplifying has been a driving force in my life for about the past two years. I have sold everything I could sell, donated everything I could donate and thrown away everything I could throw away. My house is easier to keep clean and clutter free which, in itself, makes me feel relaxed.

 

I also try not to watch too much news, especially on weekends. I also find that channel surfing actually makes me sleepy. Scrolling on the computer does the same thing.

 

Stress is probably the biggest energy thief. It sounds like you have a lot of it. I had to make a conscious decision not to let other people's problems become mine and try not to worry so much about every little thing.

 

Finally, at the end of the day, I take 30 minutes out to walk my dog. Even though I may be dragging, I take her out and I usually feel better when I get back home.

I can only do this in good weather of course. When its cold, I simply can't tolerate it and my wonderful husband does it instead.

 

Your last post sounds encouraging. I hope things continue to improve for you. good luck!

 

LL


ANA+, Nucleolar pattern, anemia.

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Barefut, I don't know if you are taking any medications for itching. But, I was on some strong doses and I cut back then now I only take them when I get severe flare ups. The fatigue went away. I don't have excessive fatigue. I still wake up several days a week and fight going back to sleep or yawn a bit but I can fight it off. The extream fatigue I use to have I would fall asleep even when I fought not to. Sorry, you are going through this. It is pure torture. Been there on a couple occasions. I am happy for some relief. Part of mine could also be from sleep apnea. I go next month to see a specialist about the situation. I have had all the tests I just have to see one more doctor and the decisions will be made. I would like to know how many people with sleep apnea really use those machines? Do they use them evey night or occasionally? I am leaving for today and don't have an extra minute to start another post. But, if you do have an apnea problem it does causes fatigue. But, my doctor said the fatigue I was experiencing months ago was from Scleroderma symptoms. Throw a few things in grocery bags if you need to. Go have fun at the cabin. Give your kids a check list and let them grab their own things. They will have fun doing it. Who cares if there clothes don't match. Its just an overnighter. I am assuming the kids are going with you. Anyways, enjoy! Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hello.

I totally agree with Shelley. I also find that certain times of the year really affect how I feel. In the fall around October I get exhausted. Everyday is a struggle to keep my eyes open. I am not sure if it is the temperature change, pure exhaustion from going all summer with the kids and now they are finally back at school and in a routine so I can rest. Not sure but I know I do nap almost everday. Sometimes it is a quick 20 minutes other days it is two hours. There is always that "but there is more to do" on my list but I have learned to let it go and do what my body is telling me. (most of the time)

 

Please do let us know what your dr says. GET SOME REST!!!

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Barefut,

You have gotten great responses! Fatigue is a major issue with me. I have tried to cut back on many activities. I do rest at least one hour a day. I know with you that isn't possible. I also am blessed in that I don't work. I don't know how you do all you do. I hope that your cabin stay will energize you. I send great vibes your way. :D

Nan

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Hello B,

It does sound like you are going through several different things in your life right now. All of which can be taxing on the body...both physicaly and mentaly.

 

I think that being tested for anemia is also a good thing. I was recently tested and found very anemic....I started taking a prescribed iron supplement and in 2 months my numbers have gone up slightly. I dont notice any difference in my energy level however. My hemotologist says that since he took care of my anemia and my energy is still not there, he will send my back to rheumatologist as he suspects the cause is autoimmune and not the anemia alone.

 

So what I am suggesting is taking care of yourself, one situation at a time. Eventually you will find a good solution.

 

Going on a calm vacation sounds like a GREAT start.....can we all come with you? :D


*WestCoast*

 

********

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Hi Barefut ,

 

That drug, Plaquenil, made all the difference in the world for Gareth. He's almost back to being his old self.......it's been almost 2 months now since he started.

 

Take care, Everyone.

Margaret

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Barefut,

I am just thinking of you today and hoping that you are doing well.

You are loved!!!

Jennifer

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Hi barefut, I'm sorry your having such a rough time. My husband had that Sleep Apnea study done and there was nothing to it. They hooked him up to some wires and tubes and put him to bed and basically just watched the computer screen all night. He does have Sleep Apnea, but he won't wear the head gear at night, so he isn't getting the benifits of the study. I hope you get some relief soon.

 

Take Care

 

Jackie S.

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Hey Barefut,

 

Just thinking about you and sorry you are sooo tired. I hope it is just a quick flare up. When I had my breathing problems this past January and Feb. , I was so tired. If you are short of breath then that could definetely affect how tired you get. Take it easy and just rest. Susie54

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Hi, Barefut. I started to answer this the other day, but I was literally too exhausted at the time. As far as I am concerned, fatigue is the single worse part of the whole package. I have been reading the excellent answers here and will have to give some serious thought to more simplification in my own life. I have already done quite a lot, but I will need to look harder, I guess. I don't see how you folks with kids and jobs manage to cope as well as you do. :)


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Thanks for all the great replies everyone,

 

Sheryl, I did have my kids pack themselves and my oldest brought everything out to the car and I loaded it. They did great. I'm not on any meds for itching.

 

Lisa, I run out of steam by about 1:00pm and always sit in my recliner to rest while the kids play outside. I have nearly fallen asleep many times. A 20 minute power nap would do me wonders but the kids always come running in and wake me just as I'm falling under.

 

Nan thanks for the good vibes :)

 

Westcoast, I'm betting that I'm not anemic and if I am, it's probably only mild. I've never had a problem with it in the past but then again, you never know with this disease.

 

Thanks for the love Jen :)

 

Jackie, It's not the study itself I'm worrid about, its the time and expense of it all that would mess me up and I just can't imagine wearing a cpap at night. How does anyone sleep with that thing on?

 

Susie, yes I have been SOB lately and am worried that progressing ILD may be the cause of some of this fatigue as well. Hate that I had to move my appts out to Sept!

 

Thank you andyko, we had a good time, wish I could live there!

 

Hello lunchlady, I had to tell my kids we couldn't hike to a waterfall this weekend. It was only 1 1/2 miles roundtrip but I knew my body couldn't do it. We settled for a shorter easier hike. I hate it when they have to miss out on fun stuff because of me.

 

I have also simplified my home and yard as much as possible. It feels good getting rid of stuff.

 

I have been guilty in the past of letting other people's problems become my own and have been doing a good job lately of not doing that anymore and it feels pretty good too! You are right in that it takes a conscious decision - I had to THINK before I would usually tell people, "Oh I can help you with that..."

 

I do pace myself, taking breaks throughout my day. Lately I can get a shower, get the kids breakfast and then I'm down.

 

I traded pet sitting with my neighbor which is starting to drain me because I am watching her 3 dogs, 1 cat and 2 horses plus watering her plants for 3 weeks and she will only watch my one dog for one week while we fly back to visit my dad end of Aug. (his birthday present to me). Kinda unfair.....but I needed her. Maybe I can squeeze a few more favors out of her...

 

Well gotta go feed some kids and critters.........and try to squeeze in a shower.

 

Love you guys,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hi Barefut,

 

Good idea to check for anemia. Also suggest you have them check your B-12 levels. I have been having a hard time with being tired and they check my B-12 levels and they were low. Started the B-12 shots and WOW what a difference. Not sure why by levels were low, that comes next but the B-12 shots are wonderful.

 

Good luck!!

 

Sue

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Dearest Barefut!

I feel for you I really do!

Sometimes I am so tired my shoes feel too heavy for my feet and I have to take them off and lay down.I wish there was an answer,but I'm not sure there is.

Some things that I know help are this:

Ask for help with everything(hard if you are proud and stubborn like me!) from all members of the family and your friends. Just until your energy has grown.

Secondly do sleep as much as you can,our bodies need so much rest, we are on constant battle mode inside as our immune systems are fighting away! It takes sleep and peace to recover.

 

Also, I am a trained Aromatherapist,and have for many years made my own oils using natural base oils and gentle essential oils which are also very non irritant. Even just rubbing a small amount on your wrists can be uplifting. Of course do check with your Doctors that they are happy with this. I do think that massage is one of the things that has kept my skin fairly soft.And it feels good too!

 

I send you lots of love and beams of energy are coming your way!

Alexandra

xxx

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Leaving for my doctor appt in a hour. Gonna discuss my fatigue and depression and ask about antidepressants, B-12 and anemia and fill him in (again) on my ILD.

 

It's hard knowing more than your family practitioner about your scleroderma. My doctor likes to just ramble on and on through the whole visit asking questions and actually answering them for me himself before I can get a word in! I end up having to talk over him and I never know if he heard me.

 

We'll see how it goes.......

 

B


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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