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Lulu

Fatigue

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Sorry if this has been covered already.

 

I'm experiencing severe fatigue and nothing seems to help. For those of you who experience this, what do to combat it?

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Hi Lulu,

 

I presented to my General Practitoner with Chronic Fatigue Symptoms last years, I have suffered with IBS and motility problems for years and the symptoms had been worsening for quite some time, along with the onset of the Chronic Fatigue. After a few courses of anti-biotics to clear a suspected Small Intestinal Bacterial Overgrowth due to dismotility, my chronic fatigue symptoms improved greatly, (not sure if the two are linked but certainly after the anti-biotics I felt alot better) Fourteen months on, I still have to pace myself daily, because of other sclero problems. I no longer work thirty hours a week, I have had to cut it down to about twenty now. Eating at regular times, taking supplements, pacing myself and resting all seemed to have helped in my case and on the days I do feel good, remembering not to take my eye off the ball for one moment and overdo it or I will pay the next day.

 

Hope this is of some help and you find some relief from your symptoms soon.

 

Take care

 

Sandy B

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Hi Lulu,

 

I don't think this topic can ever be covered enough. This past year my fatigue level went through the roof and some days it quite literally flattened me. I know from the Forum and a friend who also has systemic sclerosis that overwhelming fatigue is unfortunately common.

 

There isn't any really simple answer to dealing with fatigue. Of course getting enough rest is important, but there are some other helpful tips. One of the most useful sites I found is one on Cancer-Related Fatigue by the Cleveland Clinic. Don't let the title scare you. It's a very comprehensive guide with tips applicable to anyone dealing with severe fatigue. We also have a really good section on Scleroderma Fatigue which you ought to check out.

 

If you can 'go with the flow' and not stress out when fatigue hits, it's helpful. I have a 'comfort corner' equipped with a blanket (green fleece, mmmm, soft~), a favorite chair with a hassock, a stack of light, amusing reading, and a table with a good light and space for a teapot and mug. It's so comfortable, I almost look forward to one of those days!;)


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Jeannie ,

 

Do you still get overly tired/fatigued when on meds for sclero? Gareth is on Plaquenil, but there are days when he goes from the bed to the recliner and that's where he stays all day. I swear, he doesn't have the energy to think some days. I don't know if it's laziness,boredom, or shear fatigue.

 

Take care, Everyone.

Margaret

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Lulu, Just wanted to share that the past 2 weeks have been the worse for me and fatigue. There have been some days that I just didn't think I wanted to stay awake and try to do what I needed to do. My biggest problem is I feel so guilty sitting and relaxing. I don't know if it's the medicine I'm on or if it is from the scleroderma but I do know that I'm not happy with it. Fatigue has been one of my biggest complaints for some time now and I feel like it is getting worse. I wish there was an energy pill that you could pop in your mouth and you'd have instant energy, but I haven't found it yet. My Dr. did give me a medicine for sleepiness but I found that I can't take it.


Gigi08

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Hi Margaret,

 

Yes, unfortunately I still get those days, even with all the meds. It feels like taking the next breath is going to require more energy than I've got. I keep telling myself I ought to keep a diary so maybe I could figure out what triggers it or maybe even better, what prevents getting hammered by the fatigue.

 

Thinking back to when my boys were Gareth's age, his recliner days could be a combination of all three things. ;) Hey! Come to think of it, the girls were pretty much the same way!

 

Warm hugs to you both,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Perfect timing brinigin up this topic! If I could rid myself of one sclero symptom it would be fatigue...yes even over mobility issues and internal ones...it doesn't matter how well you can walk or how healthy you are on the inside if all you can do is sit in the corner and drool!

 

Today I wanted to go with my husband to visit a friend who's had to move into a nursing home. Instead I slept until 13:00 and am now sitting on the couch in my robe and slippers posting this and for all I know this may be it day after day after day.

 

Not only does fatigue render me unable to do anything but I also find I am unable to plan anything for a future date. This is not because of brain fog but dread, dreading the thought of planning something involving other people and then being fatigued when whatever has been planned occurs however far in advance it may be.

 

Oh well I've been able to post this whilst eating half a chocolate egg so all is not lost...I can still multi task! :lol:

 

Take care.

 

PS There may be hope on the horizon for fatigue, last time I saw my rheumatologists they talked about a trial they were recruiting for. The trial is for a drug for fatigue and will run for 3 years, unfortunately by the end of the trial I should have moved into the inactive phase so I couldn't take part...so near yet so far!! :tired:


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Amanda,

 

Sorry you are feeling so fatigued today. Fatigue is such a huge problem, it really does impact on your life. My rheumatologist dismissed it with a 'everybody feels tired sometimes', well I'd swap places any day. I have been better of late, compared to last year, but I still get days where I have to drag myself screaming out of bed.

 

Had to work three hours this morning, the only thing that kept me going was the thought of my couch and not having to work this evening, hooray. I had wanted to do so much today, but it can wait, it will have to wait!!! It's a holiday, so I will not feel guilty for lazing around this afternoon. But I do constantly remind myself how lucky I really am that I am still able to work part-time, being housebound would give me cabin fever, I would definitely go stir crazy as I live on my own and the thought of not seeing people.....well I won't even go there.

 

I know what you mean about multi tasking, last year if I managed to inhale and blink my eyes at the same time, I thought it was a major achievement, but as I have already said, my fatigue is so much better compared to last year, there were days when I thought my life was over,so thank you, thank you, thank you for the reprieve.

 

You take care

 

Sandy B

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Ah fatigue...yes I have it often. No set pattern, can lose a whole day to it often three or four. Total lislessness.I make grand plans to have fun but always secretly hoping fatigue doesn't ruin everything. A little walk rather than total inactivity makes me feel a little better. Last week I really couldn't drive back home because of tiredness. I lowered my car seat a little, put dark sunglasses on and slept for half an hour...all in the supermarket's car park!It's the trend here in the U.K. to potter about in pyjamas all day. People take the bus, go the supermarket in their P.J.s so lolling around the house and answering the door in P.J.s is no big deal.I keep in my mind that the fatigue will pass and some normality will return.

Off for another snooze now, yes a 'fatigue day' again.

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It was like some missing piece snapped into place yesterday. I had so much energy and the fog of exhaustion was gone. So weird.

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Oh Ladies.....this is one of my real pet hates ! It has effectively restricted my social life to almost zero over the last 12 months, as I have become a virtual recluse. I still work full time, but boy, does it take it out of me. I get home, and tend to sleep for about two hours before I can even think about making tea etc.

 

I know just how frustrating it is Amanda to make plans, and then have to pass on them - I am a big live music fan, but I have wasted at least a dozen tickets over the last year, due to my complete exhaustion on the days in question. I used to be at the front of the crowds, arriving early (being small, it's the only way I get a decent view!) and hanging around for a couple of hours before the main act took to the stage. I simply cannot imagine being able to do that these days.

 

And the worst thing, is that it happened so quickly. Some of my friends really have no idea what is going on with me, as I simply don't have the energy to keep up with everyone the way I did.I just hope that when I do get to see them and explain, that they will understand that it wasn't them - it was me.

 

I'm sat here currently, forcing my eyes to stay open, knowing that I can sleep in less than an hour from now. It doesn't help much when I feel like this though...

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