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Fatigue


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#1 ShawMJ

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Posted 01 November 2006 - 08:46 PM

Hello everyone,haven't been on here in a whilebut have read posts.I'm just wondering how many of you have this awful fatigue.I've BEEN having it and it just flat wears me out.I don't feel like doing anything and when and if I do it tuckers me out big time! We had our 42nd wedding anniversary and I didn't feel like going anywhere just told my husband we'd go when I felt better,so far that hasn't happened.Also very short of breath,I do something that has to be done and have to stop because I'm losing breath and thats so scary! Not helping my weight problem either as I'm not doing as much as I used to.We'll be going to the dr.next week.I also hurt my back again I have a herniated disk and my back has been really hurting,we have a cold front coming and I know that won't help matters none.Hopefully internist can help me out with the back problem that would help as I don't feel like doing anything when I'm tired and in pain! I know it will get better,this is just a bad time for me and I'm hoping that soon it will all be better.I am feeling optimistic about getting help for the back at least.Maybe the fatigue I may just have to put up with although I don't have to like it! Take care everyone and keep smiling! Hugs to all,Mary-La.

#2 Sue

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Posted 02 November 2006 - 03:23 AM

Hi Mary,

So sorry to hear about your fatigue and back. Keep the faith. Fatigue is a big problem with me and I know how you feel. I get so mad, angry, upset that I cannot do the things I used to, especially when I get a flare. Then I get to the point that I can barely walk up the stairs. My best advice is when you feel like that to just take it easy. It will pass. I know it feels like forever for it to ease up, but it does get better. You may still want to talk to your Dr. A lot of people with Sclero have problems with their thyroid and that could also be making you tired. Good to hear from you and I wish you the best!!

Sue

#3 janey

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Posted 02 November 2006 - 03:54 AM

Mary,
First of all - Congratulations on your 42nd wedding anniversary!!!! That's a lot of years and I know they've been good ones from all your postings I've read.

Sorry to hear about the fatigue. Of all our symptoms, that has got to be the worse because it's there 24/7 and I think the harder you fight it, the worse it gets. Have they changed any of your meds recently? I was doing great, then about a month ago they changed one of my meds and the fatigue hit me like a rock. I was down for the count. I only stayed on that med for 3 weeks and within 24 hours after stopping it, the fatigue lifted. So just a thought.

I hope the doctor can address the fatigue issue and ease your back pain. Also, please get the SOB looked into as well. That can be caused by so many different things, and needs to be addressed. Please let us know how you are doing.

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Janey Willis
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#4 miocean

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Posted 02 November 2006 - 04:18 AM

I, too, suffer from fatigue. It is very frustrating and sometimes I wonder if it is fatigue or depression. I have more energy now than I did when I initially came down with sclero but not like my old self. I find it an effort sometimes to do daily tasks and find myself laying down every once in a while. My sclero specialist says that one of the biggest problems is fatigue.
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#5 Beanpole

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Posted 02 November 2006 - 04:18 AM

Congrats on your anniversary Mary!

Yes, I'm quite fatigued 24/7 but I push myself to go on throughout the day. We fight to stay alive and kicking adn that alone overwhelms us. Question? Have the doctor checked your iron level? If not, see if you can get that checked soon. I have severe anemia which lowers my iron level. It has landed me in the hospital on many occassions. Don't take this symptom lightly even if it may be overlooked often.

Keep us posted,
Michelle C. Hunter
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#6 Sweet

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Posted 02 November 2006 - 06:25 AM

Hi Mary,

Oh yes, I have the fatigue BIG TIME. It's one of my biggest complaints. I have been seeing someone for nutritional support in hopes that would help and it has some. But I truly have to have the motto of "Pace not Race" It's silly the things I have to chose between. Balance is very important and even with that the fatigue wins out quite often. Listen to your body, and don't push yourself. Plaquenil really helped me Also, the person helping me with nutrution put me on amino acids, and fish oil. It's helped as well. Doing some sort of exercise helps to, even when you don't feel like doing it a short walk can help.

Sorry for the way you are feeling - we're here for you.

Love Sweet

Warm and gentle hugs,

Pamela
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#7 Sam

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Posted 03 November 2006 - 02:25 AM

Yes I have fatigue really bad too and when I get sick it's even worse. My husband sometimes will say to me how can you sleep like that. I told him I didn't know but I have been like that ever since child hood. All these years I have battled fatigue, I just listen to my body and layed down when I am tired.

Congrats on your 42 anniversary, I just had my 4 years with my third hubby. We idn't do any special either just stayed home and had a nice dinner. Take care. Sam
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#8 LisaBulman

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Posted 03 November 2006 - 02:50 AM

Hi Mary,
Congrats on your anniversary!

Fatigue comes and goes with me. The past few weeks have been really bad. I find my self crawling into bed around noon and I have to set my alarm to make sure I am up to get the kids from the bus at 2:45. It takes about 5 minutes and I am out cold, in a deep sleep and I struggle to get up to get the kids. It is not everyday, but a few days a weeks. Don't try to fight it, it only makes you more miserable. :)

Hugs,
Lisa
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#9 debonair susie

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Posted 03 November 2006 - 07:03 AM

Hi Mary,
I feel for you... the fatigue is bad enough, but to have herniated disc problems has to be really rough :( . I sure hope your dr(s) can suggest something to help ease the pain you're experiencing.

Congratulations on your 42nd anniversary also... I hope you and your hubby are able to celebrate soon... when you're feeling better. My hubby and I just celebrated our 20th... in September.

Hugs, Susie
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#10 WestCoast1

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Posted 03 November 2006 - 11:15 AM

Hi there Mary~
I was wondering if you had ever tried, or the Dr. had ever recommended Plaquenil for your fatigue? I used to suffer so much worse with fatigue and pain before I started on it. It took about 6 months before I really noticed any difference, but I really think that it helps in that regard. Dont get me wrong, I still have my days...or weeks, where my body is just tired and run down, (especially in the cold), but looking at the big picture, its better than every single day.

So maybe it is something to talk to with your Dr. and I will be hoping for some relief for your back as well!
*WestCoast*

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#11 Sandybeach

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Posted 26 February 2016 - 07:05 AM

Hello. I am struggling with fatigue. It's all I can do to get up and get to work. I have "paced" myself into a vicious cycle of getting ready for work, working and sleeping. I now have no room for previous volunteer work or my very occasional part time job and worse I'm missing family time and events.

 

I'm lucky my husband has picked up the slack and does all the grocery shopping and cooking. Sadly he's getting used to going to events without me. I've used up most of my vacation days to have recuperative time for big events like my grandkids days.

 

I understand from what I've read that fatigue can be a symptom of limited scleroderma. My blood is fine and I've tried Plaquenil but was also on methotrexate at the time and was exhausted. I'm off both now and I'm still exhausted. I don't feel depressed I feel frustrated that I don't have the energy to enjoy life outside of work to the same extent as I used to.

 

Do you have any advice to help me convince my doctor that my fatigue is real, overpowering and not depression? Thank you.



#12 Joelf

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Posted 26 February 2016 - 09:59 AM

Hi Sandybeach,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with fatigue, which can be very debilitating and affect almost every aspect of your life.

 

It's a pity that your doctor is not aware of the effects of fatigue. Unfortunately, it can be a little known complication of autoimmune diseases and can easily be confused with other problems such as depression.

 

We have medical pages on Fatigue and also Chronic Fatigue Syndrome (CFS), which perhaps you could print off and take to your doctor, to help you to convince him that the symptoms that you're experiencing are indeed real and not a figment of your imagination. I do hope that you will also find them helpful and informative.

 

We do recommend that our members, if possible, consult a listed scleroderma expert, as this disease does require specialist knowledge and expertise, in order that the correct treatment can be given.

 

Kind regards,


Jo Frowde
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#13 Shelley Ensz

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Posted 26 February 2016 - 10:02 AM

Hi Sandybeach,

 

How long have you had limited scleroderma?  If you have a new diagnosis, the stress of the adjustment period can cause fatigue. If you've had it for over a few years, and this is a new development, you should see your scleroderma expert to be sure that you don't have any new complications, such as inflammation or an underlying sleep disorder, or overlap of another condition, such as fibromyalgia.

 

Sometimes fatigue can be relieved by antidepressants, not necessarily because you are depressed, but because many of them can also improve sleep and relieve pain. I've tried several antidepressants over the years, even though screenings for depression and mental health issues were negative. One I tried for bladder spasms, way back when, but it only succeeded in making me lots worse and no better.  Another one hugely relieved my fibromyalgia pain, but I then developed adverse side effects and had no choice but to wean off of it.

 

So, just because a doctor is recommending antidepressants, don't assume it means he thinks you have depression. Unless he flat out says so. Also don't discount the fact that depression is a normal complication of chronic illnesses as we find ourselves less and less able to do normal activities. Do think back, and see if you can recall whether or not you are laughing and smiling and joking around as much as you did before your diagnosis. Do you basically feel happy and cheerful, and eager to have as much fun as your body will let you?

 

Or, are you just languishing in your down time, laying in bed and worrying rather than reading a book or listening to beautiful music?  And, are you putting limits even on joyful activities, like grandkids, which I find worrisome that you refer to as "days", since I likely couldn't survive even an hour or two of little ones and the constant energy and attention most of them demand.

 

As for not doing the shopping, two thumbs up for you!  I joyfully eliminate any activities that I do not find refreshing or challenging or fun. My time needs to be invested in sustaining my joy, and not depleting it. If I loved shopping, though, I would insist on doing it myself as much as possible!

 

Maybe you're contemplating disability, or working part-time instead of full time. Sometimes that is an option with scleroderma, but that depends on your symptoms and their severity, too. If it's on your mind, be sure to discuss it with your doctor and lawyer before making *any* changes in your work schedule, so that you know what your legal rights and potential benefits are.

 

Anyway, I hope you find ways to get the absolute most joy out of your life right now, with whatever energy you possess at any given moment.

 

:hug-group:


Warm Hugs,

Shelley Ensz
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#14 Sandybeach

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Posted 04 March 2016 - 11:15 AM

Hello Joelf and Shelley,

Thank you both so much for your informative reply. I was diagnosed 8 months ago; it seems like it's been a long battle to get thus far.

Aside from dealing with limited scleroderma and fatigue, I'm also experiencing cognitive issues. I use many post it notes and calendar reminders to help me get through the work day but even these memory cues don't seem to work as well as they used to. Since cognitive issues are not a symptom of scleroderma and I have extreme fatigue, I can understand why my doc would think antidepressants would be appropriate. I just don't feel depressed although I'm willing to try anything to eleviate at least one of my symptoms. I did notice that chronic fatigue syndrome does list cognitive issues as a symptom. How many Limited scleroderma patients have both scleroderma and CFS? Any idea?
My antibodies are >PM/Scl 100 which I understand could correspond with Polymytosis-scleroderma overlap. In reading articles I have not seen the number 100 referred to in antibodies; usually it's PM/Scl 70. Can you refer me to any articles that may help me understand the difference between 70 vs 100 - or perhaps there is no relevance.

I am seeing a rheumatologist that runs the scleroderma clinic in my town. I'm not sure if we like each other yet - I say this half jokingly as neither of us have another option.

You're correct, I am wondering about working fewer hours so home life is worthwhile. I'm not sure how I'm going to pull this off yet!

Thanks again for your support.

#15 Joelf

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Posted 05 March 2016 - 05:48 AM

Hi Sandybeach,

 

As a matter of fact, I also have the Anti-PM/Scl antibody, although thankfully, I don't appear to have any symptoms of polymyositis; neither do I have the Scl-70 antibody. As I understand it, scleroderma sufferers with the Anti-PM/Scl antibody tend to have associations with myositis, mild skin involvement, pulmonary fibrosis, articular involvement and calcinosis and a lower prevalence of pulmonary arterial hypertension and gastrointestinal involvement. In my case, this is fairly true, as I only have very mild skin involvement (merely the tips of my fingers) pulmonary fibrosis and articular involvement, but again thankfully no pulmonary hypertension or gastrointestinal involvement (so I consider myself to be very fortunate!)

 

I've included a link to our medical pages on Antibodies in Systemic Scleroderma and also What are Autoantibodies? to give you some more information. However, antibodies are only a small part of the picture and are by no means the be and end all of the diagnostic process. The clinical signs and symptoms of scleroderma are more relevant.

 

Many of our members have reported cognitive issues and fatigue as symptoms of scleroderma, although because it's such a rare and difficult disease to diagnose, it's no wonder the average general practitioner is not totally au fait with all its little idiosyncrasies.

 

I do hope that your relationship with your rheumatologist will be satisfactory; it's quite important to have a consultant in whom you can have confidence and trust.

 

Kind regards,


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#16 Sandybeach

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Posted 05 March 2016 - 01:54 PM

Hello Joelf

How nice to hear from you so quickly and with such a reassuring and informative reply. May I bother you with one more request? Are there any articles that link scleroderma, fatigue and cognitive issues. Both my family physician and I have not seen any cognitive type issues (certainly not listed as a symptom) related to scleroderma.

Thank you for your support.

#17 Joelf

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Posted 06 March 2016 - 04:24 AM

Hi Sandybeach,

 

I've included a link to our medical page on Brain (Cerebral) Involvement in Scleroderma , which includes an article Cognitive and cerebral hemodynamic impairment in scleroderma patients.

 

On our Brain Involvement page we have articles relating to scleroderma and cognitive issues and on our Fatigue pages we have articles on scleroderma and fatigue. I've also found an article Measuring illness behavior in patients with systemic sclerosis, which I hope you'll find interesting and informative.

 

Kind regards,


Jo Frowde
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#18 dimarzio

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Posted 10 March 2016 - 09:02 AM

I feel faint nearly all of the time.  I'm wondering whether this is Pulmonary Hypertension or whether there is some cerebral involvement.  I've recently had a heart echocardiogram and lung function tests and am awaiting the results.

 

Another thing is that I have proven esophageal problems, severe stomach bloating after eating and my bowels are not working properly along with the aching joints, and awful Raynaud's affecting my entire arms, legs and face (body and head are hot but everything else is cold).

 

Interestingly, I have very little skin involvement (yet) not sure if this will come later or whether it could be Sine Scleroderma - the problem with Sine Scleroderma of course is that nobody believes that you have it.



#19 judyt

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Posted 10 March 2016 - 11:36 AM

Hi,

Not necessarily Sine Scleroderma but possibly Limited Systemic Sclerosis.   I have no skin involvement except a little on my fingers but I have extensive Internal Involvement.

 

This type of Scleroderma is often called CREST which has now gone out of general use and the more descriptive name is limited cutaneous systemic sclerosis abbreviated to IcSSc in research literature, if you are interested in looking that far.

 

Sine is not the only type which it is hard to persuade onlookers about, I know that folks look at me and think 'what a fake' .   I look fine, particularly because I have no curled fingers or other Arthritic changes but Oh! Boy do I have fatigue and internal worries.   Fecal incontinence is the worst of course, but Oesophageal dismotility makes one seem like a super fussy eater.   My Oesophagus has deteriorated into Achalasia, which you can look up, so I have to be very careful what I try to eat.

 

On the other hand I rarely decline an invitation to go out.   If I am in the car I am fine, I can manage a level walk of 200 yards or so and if I am with somebody from my family my wheelchair is seldom declined.

 

My lung function is impaired but not so much as to cause me too much distress, but it is there and I get puffed out very quickly on exertion.   They tell me my gallbladder is misbehaving and I have Primary Biliary Cirrhosis which means my liver is below par.  Folks with PBC complain about the fatigue they have to put up with but add that to IcSSc and you will know all about fatigue!!   I don't have any jaundice and you can't see my liver so obviously it must all be in my head!!

 

All that aside I think I am happier that I have internal involvement rather than skin and arthritic changes because I can work around the things that ail me and still have fun.

 

Best wishes from the upside down side of the world

Judyt