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kiwimum03

What To Do For Fatigue?

14 posts in this topic

Hi everyone,

 

is there anything that you can suggest I can take for fatigue and tiredness?

I am not seeing the rheumatologist until the 19th March and I don't know what he will suggest I take now since I had a reaction to the Plaquenil.

 

Do vitamins help? I am just SOOOO tired. But I guess since the fatigue isn't from lack of vitamins it probably won't help.

I just don't know what other drugs the rheumatologist can give me since I don't have a diagnosis.

 

I went bra shopping yesterday and an hour later I had to go and lie down from exhaustion and my shoulders and ankles were killing me.

 

I know the Prednisone made me feel better, but long term that is not a good option, although it did make me feel a bit normal again for a week.

 

I am so tired it just makes me want to cry, each day it feels like it is getting worse, I need to lose weight but I am too tired and sore to exercise, so I feel like a fat blob, who can't do anything.

 

I have to learn how to pace myself. On the odd day that I wake up feeling fairly good and not to sore or tired, I tend to do too much and that wipes me out for another day.

Bless my mother who helps me all the time.

 

thanks for listening,

Hugs,

Irene P.S (sorry if I posted about this all before my memory is shot)

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Hi Irene,

 

Man I can relate only too well. I am on plaquenil and I still have fatigue. My rheumatologist keeps pushing "exercise" to help with my fatigue, but I felt just like you "I'm too tired to exercise" BUT. I MADE myself do it and I'm here to tell you I do have so much more energy. It's weird. On the days I don't do 30 minutes on the treadmill I'm dragging.

 

Give it a try, but ease into.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Irene,

I exercise also in the morning and my energy levels have been great. I use to drink black tea to stay awake sometimes 2 cups because my fatigue was so bad and still I'd fall asleep - even while at my desk at work. Now, I don't remember the last time I drank tea. I get up at 5:30 to get my 20 mins of exercise in and I'm awake all day. I tried exercising at night and couldn't sleep to save my life.

 

Just start easy on the treadmill. I always remind myself it's not a race just an easy pace... hey that rhymes!

 

peanut.


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Irene,

Fatigue is a major factor for me too and pain! I am on plaquenil, but it doesn't help with fatigue. I make myself walk 30 minutes a day. I prefer doing it in a heated pool, but I sometimes mall walk if air temp at pool is too cold. I can't say that it gives me more energy, but it makes me feel a bit better. I hurt a lot while doing it , but I try to focus on something good and it helps. Don't try to do 30 minutes the first time. Shoot for 5. Take care!

Nan

I have CREST , Sjogren's Syndrome, and Fibromyalgia.

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Thanks for the encouragement Pam,

 

I thought about getting a treadmill, as I do like walking, but since I have become sun sensitive it is proving difficult, and I also though that at least having the treadmill at home, if I get tired I can just stop, instead of being stuck out on the streets somewhere!!!

 

Hugs,

Irene

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Thanks for all the replies, I did try Hydrotherapy for a while, but some days it would wipe me out, and I do find the heated pool would sometimes upset my bloodpressure, I wish I could find a lukewarm pool to work out in, most of them just seem a tad too warm and I overheat and feel dizzy.

 

I just need to lose some weight, I do usually watch what I eat, especially now my stomach seems to be emptying quite slowly, I wonder if that attributes to weight gain?

 

hugs,

Irene

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Hi,

 

We (hubby and I) got a treadmill to improve our health. I think walking is a great way for us to get some exercise. I agree that doing too much too soon will only deter us because it will put us down for a couple of days due to over doing it.

 

I'm finding that breaking up my "walks" into shorter segments is working for me. I quit 2 or 3 minutes after I start thinking that "this is getting hard". Then a few hours later I'll do the same thing. If I feel like it later, I'll do it again.

 

If I've had a more active day or if it's one of those days I just don't feel good, I skip it. I also think it's important to listen to your body. And remember, I am not working outside of the home right now either. I add that just so nobody thinks I'm doing a whole lot!

 

Good luck. I do think it helps.

 

xoxo emmie

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Irene,

 

Being tired is the worst part of this disease. I exercise in the morning because I know by afternoon the level goes down. There are vitamins that help. I take two that help me alot and are recommended by rheumatologist but they are a vitamin c mixture and a vitamin for energy. If you send me a PM, I will tell you the names that I take. I hope you find a balance to help you. It is frustrating. Susie54

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Irene,

 

I felt exactly the way you do, most of the time, for like the past two years. It was getting really bad and I finally demanded something for the pain and fatigue. (although I had more pain than fatigue most of the time)

 

I started 5mg prednisone almost a month ago. I know pred comes with a lot of scary side effects and needs monitoring etc. but I can't tell you how much better I feel.

 

I feel like I have my old life back. When I first realized one day that nothing hurt, I nearly cried. It was the most amazing feeling of peace and calm and tranquility that my body has not felt in probably 10 years.

 

Since I feel so much better I am actually motivated to take on all those projects that have been on the back burner for so long. Not to mention being able to just GET MOVING again! I am starting a water workout class, I am shopping for a treadmill and I can't wait to get out in the yard (when it WARMS up!)

 

Maybe daily low dose pred could be for you too. Ask your rheumatologist about it. I know after this post you will get a lot of people warning you about pred. That is good. Find out all you can about it first and decide if its right for you. I have decided it is well worth it for me. So far no bad side effects. Quality of life is what its all about for me. I have two young boys to keep up with and I'm not ready to fold it up yet.

 

Sounds like you have some experience with pred already so you know what good it can do for you at least short term.

 

My hand therapist talked to me about pacing myself and metioned to me that when you go for broke on good days and then take your down days afterwards you can eventually sprial downward. She said its better to take the peaks and valleys of life and try to chop off some of the peaks to conserve energy so that you end up progressing in more of a straight line.

 

Hang in there and keep in touch about what you decide to try.

 

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Thanks Susie54, Emmie and Barefut for your replies, they are very encouraging, and I know I am not alone in this fatigue.

 

I have been toying with the idea of a low dose Prednisone, probably like 5mgs, just so I can get a grip on everything like the fatigue and pain, so I can lose some weight and keep up with my kids more. I have 3 kids all aged under 5yrs, so it gets quite demanding, and it makes me sad that they ask me so often if my bones are sore today.

 

Barefut, yes I have been on Prednisone before. I was on 40mgs for one week (which made me feel TOTALLY normal again) and then 20mgs for one week.

Unfortunately I had a bad experience coming off it because the rheumatologist didn't taper it properly, but of course I won't make that mistake again.

 

Its funny, I remember at the time coming off it how horrible I felt and vowed never again to use Prednisone, but now I am so desperate, all I can think of is that first week on it an now amazing I felt.

 

I will see what the rheumatologist comes up with and if there is anything he can suggest.

I just feel if I can lose some weight it will help alot, but most of the time I am just so exhausted and sore, but maybe I do need to push myself a little, but in moderation.

 

Hugs,

Irene

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Hi Irene,

We also have another thread on prednisone, entitled Wonder Drug. But please don't be deceived by the title.

Here is an excerpt from my message in the thread:

"I'm very glad for everyone who has found relief with prednisone, and I really don't want to rain on anyone's parade, as I know how precious even a few moments of relief can be!

Unfortunately, prednisone is strongly associated with kidney failure in people with scleroderma, and with pneumonia (increasing the risk by 70%). Even low-dose steroids can cause irreversible loss of brain tissue in people with autoimmune disease. Thus it is strongly recommended to try to avoid corticosteroids (such as prednisone) in people with systemic scleroderma. See a Glucocorticoids, Steroids (Prednisone) Warnings for Scleroderma

.

When avoiding it simply can't be done, work with your medical providers to try everything possible to keep it to the lowest dose. As Mary so aptly points out, you don't need to be on it very long for severe and irreversible problems to begin -- and scleroderma puts us at greatly increased risk of severe (and even deadly) side effects from prednisone and other corticosteroids."

Also, this is absolutely not the drug to take in order to lose weight! It is strongly associated with weight gain...almost inevitably so, since it dramatically increases the appetite and can also cause fluid retention.


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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Thanks Shelley,

 

I think I had read that post previously, but it was good to read it again.

 

I hope my rheumatologist can come up with something other than Prednisone to give me more energy to even think about exercising. And I had forgotten it made you put on weight!

 

Hugs,

Irene

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Hi, I have found the fatigue is terrible too. I try to keep moving until the pain makes me sit or rest. I have bad knees that aggravates things. I am also anemic which I am sure has a lot to do witht he tiredness. I do take my iron to help that. Winter seems to make things worse. The warm sun actually helps me and I feel better when I can get out and try to be like other people.

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I take prednisone. What's considered a high dose? I take 10 mg/day and my rheumatologist doesn't consider that high. I also use a 80 mg prednisone inhaler. I don't know about my inhaler. It does give me quite a bit of energy, I feel almost buzzy sometimes, but I take all the prednisone for my lung complications.

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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