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Exhaustion and weak legs and arms


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#1 Gizelle

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Posted 27 June 2011 - 11:06 AM

Hi all.

I haven't posted in a couple of years, I think that long or longer. I wanted to ask if any of you suffer from weak legs, arms and feel and look shaky all over. I also get so tired I literally can't stay up. The weakness is lasting longer then it did when it started, which was about 3 or so months ago. I can barely walk or lift anything. My doctors don't know what's going on. I was diagnosed about 3 years ago. The doctor doesn't know what kind I have.

For two days last week I was exhausted, short of breath and my chest felt like someone was sitting on it, that's also when I was weak. The shortness of breath passed after 2 days but the weak legs and arms lasted for 7 days. It never actually goes away it just flares up.

Any help would be appreciated. Gizelle.

#2 Joelf

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Posted 27 June 2011 - 11:50 AM

Hi Gizelle,

Sorry to hear that you've been suffering horrible symptoms over the last few months.

Certainly Fatigue is a common problem with Scleroderma and is often played down by rheumatologists. I've included another link as well to Fatigue: an overlooked determinant of physical function in Scleroderma which I hope you'll find informative.

I have experienced very painful joints although I wouldn't describe the feeling as weakening but I did find that because of the discomfort it was hard to use my hands normally. We also have an interesting page on Hand and joint involvement which does give some useful information on how to treat some of the problems of inflamed joints through exercise and non-medicinal means.

I think if your symptoms persist it would be worth going back to your doctor to see if he can suggest anything to help you. I assume you're being treated by a Scleroderma specialist as you've been diagnosed for 3 years.

I do hope that the discomfort you're experiencing soon improves and that you begin to feel much better.

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#3 Jeannie McClelland

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Posted 27 June 2011 - 01:20 PM

Hi Gizelle,

I'd add another link for you to have a look at. It's a very helpful article on cancer-related fatigue by from the very excellent Cleveland Clinic. No, I don't think you have cancer - it's just that the article offers more practical advice than I have ever seen elsewhere.

I've experienced the extreme fatigue and weakness in my arms and legs (got some going on right now), but mine has always been associated with recovering from an infection, especially if it is viral. I know that part of mine is due to de-conditioning from not being as active while I was sick, but I'm inclined to think there is a bit more to it. So I'm with Jo, I think at least a call to your doctor is in order.

I hope you feel better soon. Best wishes,
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#4 Amanda Thorpe

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Posted 27 June 2011 - 02:24 PM

Hello Gizelle

I find the comment "my chest felt like someone was sitting on it" alarming and something you most definitely should bring to the attention of the doctor. It could be anything but it's better to be safe than sorry.

Fatigue is a real problem for me right now and I am sorry but I don't have anything helpful to say on the subject except zzzzzz :lol: !

Take care and keep posting.
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#5 Shelley Ensz

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Posted 27 June 2011 - 04:14 PM

Hello Gizelle,

I'm assuming you already went to the doctor, and they checked out your heart and lungs and they were fine. Is that correct? If all that checked out okay, then it is possible that you may have experienced a panic attack. Look at Panic Attack Symptoms at Mayo Clinic and see if you relate to any of them. You'll see they can really and truly give you the feeling that you're going to die, and also feel as though they are a heart attack.

In fact, the symptoms are so close to heart attack (most of the time) that it really takes a doctor to tell the difference. I've had a panic attack and believe me, it was no fun at all!

It is not unusual for people who suffer from anxiety to continue to believe that something near-fatal just happened to them, too, even though they have checked out just fine at the doctors. What makes it all worse, is that we have all heard the stories of someone who just had a perfect physical, walked out of their doctors office, and keeled over dead. Stories like that just feed our anxiety even more!

Anxiety can take a terrible toll by spurting out adrenaline, which can leave us weak as a dishrag afterwards (and even more worried, therefore).

Point is, though, that if this happens again, even if you or your doctors are pretty sure it was a panic attack (or at least, no known physical cause), you still have to be seen medically because it takes a professional to sort it all out. Its not a do-it-yourself diagnosis, and panic attacks have the potential to destroy quality of life, if they are not identified and treated.

I'm not saying that's what you experienced. I am not a doctor, and I have no medical training at all. I am just saying that it is sometimes what our doctors are concluding -- very often without sharing their thoughts on the subject with us.

I must also point out that panic attacks can happen totally out of the blue. It's not like we need to be upset, stressed, or thinking negative or anything (as most people presume). They can strike even out of the blue on lovely days when everything is going great, and they can also have underlying physical causes such as asthma or adrenal gland disorders.

Point is, don't self-diagnosis with anxiety or panic attacks, either as there are also many other possibilities! Please see your doctor again, and ask what all the possibilities are of things that could have caused what you experienced, short of an already-disproven (we hope!) heart attack or pneumonia.

Ask to be screened for each of the items that are left over, too, including asthma (if they haven't covered it already, that is.) I have a friend who thought she was having panic attacks for many years, but it turned out that it was just an understandable anxiety reaction to undiagnosed and untreated asthma attacks.

Meanwhile, here are some extra warm, comforting and understanding hugs, just for you.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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#6 Shelley Ensz

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Posted 27 June 2011 - 10:31 PM

Gizelle, I just had another thought as well. I remember that you also have fibromyalgia. Over 50% of people with fibromyalgia eventually experience costochondritis, which also causes chest pain and often even mimics a heart attack. It is inflammation in the chest wall. It also causes difficulty taking a deep breath. Here is a Mayo Clinic article on Costochondritis.

This doesn't account for the weakness in your legs, but fibromyalgia alone can do that, too. I also have fibromyalgia, as well, and I have had costochondritis several times, along with somewhat alarming but also passing weakness in arms and legs. Very rarely, scleroderma overlaps with things like polymyositis, but that is usually more long lasting and it is generally detectable by blood tests. Scleroderma itself might be able to raise all sorts of havoc, but I find myself that fibro flares can often be worse than scleroderma symptoms, especially the mind boggling fatigue and all over pain.

Anyway, it's something to read up on, and something to make sure that your doctors have considered, too.
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#7 CraigR

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Posted 27 June 2011 - 11:37 PM

Hi Gizelle,

I have myositis attacks secondary to sclero. Muscles become very painful and fatigue gets sort of overwhelming. Can make breathing uncomfortable when it "travels" to the chest area. Usually follows physical stress, but sometimes comes on for no apparent reason. Typically lasts about 4 - 7 days.

Unlike fibromyalgia (and panic attacks), these attacks show up on inflammation tests (ESR [sed rate], C-reactive protein). If these tests are positive, there's some sort of inflammation process going on. I find that keeping track of these tests is very helpful.

Good luck,

Craig

#8 judyt

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Posted 28 June 2011 - 02:46 AM

Hi Gizelle,
I have had many years of feeling weak in my legs and arms. I know I have had CREST (systemic sclerosis) since 1966 when I was 22 because I can read back in our diaries about when I had my first Raynaud attacks and gastro discomfort. We kept diaries in those days because we were travelling in the UK, having just got married in New Zealand. Little did we know how useful those notes would be in the future.

When I was diagnosed in about 2003 I had my first Echocardiogram which showed that I had had Rheumatic Fever as a child and was now showing signs of Mitral Stenosis. Which has now been repaired and my heart is as good as it will ever be.

I can also remember feeling weak in my legs from time to time since I was about 10 (perhaps that was when I had RF - I don't know). As years have gone by the one thing that has bothered me has been a weak feeling in my legs and more lately in my arms. I have asked every doctor I have seen if they have any ideas and I just get the usual shrug. I might add here that I have never seen a Scleroderma Specialist because there are none in New Zealand so I am still wondering if this feeling is Sclero or RF or all in my head.

Frequently I just have to sit down or I feel I will fall down, but I never actually have fallen.

Tomorrow I go for a Lung Function test, having had the previous one about 18 months ago when I had moderate pulmonary hypertension from the Mitral Stenosis. I am almost hoping that the reduced DLCO that showed up then is still there and might explain why I am so weak. Of course if I have started lung fibrosis I will be devastated but having something which is so limiting to my activity is also frustrating. I have lately started avoiding stairs (my sewing room and laundry are downstairs and if I go down there I go to stay for most of the day), avoiding slopes when out walking, avoiding going out for very long, avoiding lots of things.

Maybe somebody else will chime in with similar experiences, but who knows whether we will ever get to the bottom of it.

Warm hugs from NZ

Judy T

#9 Shelley Ensz

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Posted 28 June 2011 - 07:16 AM

Hi Gizelle,

I second Craig's motion about the myositis.

It is so easy for us to "assume" that because your doctors don't know what it is, that this means you have already had thorough evaluation of these symptoms done, ruling out all the major possible causes such as heart, lungs, myositis, etc. with all sorts of testing and blood work.

Whereas, you might have just gotten the usual shrug, like Judy T mentioned, especially since you said that it "never actually goes away, it just flares up", indicating that this is a pretty normal state of affairs for you. Knowing of other possibilities that perhaps you haven't been evaluated for might give you some ideas of things to consider asking your doctor about the next time this happens to you.

Regardless of the cause, I'm very sorry you felt so poorly and don't have any clear answers. That can happen a lot with chronic illness and I know what that's like. We don't always get clear cut answers when we have multiple things going on (like both scleroderma and fibromyalgia), but still, we can take some slim comfort in the idea that the worst things have been ruled out and we are probably going to live out the day.

PROVIDED, of course, that we really have had the worst things properly ruled out, at some point in time!

More warm hugs for you.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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#10 Gizelle

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Posted 30 June 2011 - 06:24 PM

Thanks to all of you who gave me feedback on my post. I did see my general practitioner and she said that it was symptoms from my Fibromyalgia. I did do some checking and all the symptoms that I had last week were most likely from the Fibro. Thanks to all of you that replied.

#11 janey

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Posted 01 July 2011 - 10:41 AM

Gizelle,
I'm going to jump in here and third Craig and Shelley. I have polymyositis overlap with scleroderma. Both are connective tissue diseases, therefore, many people do get the overlap. The symptoms of my poly were the weak arms and legs. It was difficult to wash my hair because my arms got so tired and doing stairs become almost impossible. Depending on the height of the chair, I sometimes needed help to get up. So if these symptoms sound familiar, please have your doctor check your CK, also called CPK. These are your skeletal muscle enzymes and if high, it is a strong indicator of polymyositis because it indicates muscle inflammation. It is just a simple bloodtest, but can tell you a lot.

Please let us know how you are doing and if you do find out the cause of your new symptoms.
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#12 Shelley Ensz

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Posted 05 July 2011 - 06:01 AM

Hi Gizelle,

I'm glad you got some answers, at long last!

It's so worrisome when things go wrong but we have no specific answers, isn't it? Given my own experience, I'm not the least bit surprised that fibromyalgia was the culprit for that particular experience of yours.

But a note to others reading this topic, nobody can assume that just because they also have fibromyalgia and are experiencing the same symptoms, that they also have the identical cause. We all need a doctor's evaluation when experiencing new or troublesome symptoms, because the same symptom pattern can often be caused by multiple illnesses (sometimes even hundreds of possible illnesses) -- like Janey and Craig's experiences with similar symptoms but different diagnosis proves out.

Here are some more warm but soft sclero-fibro hugs for you, Gizelle.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#13 Gizelle

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Posted 05 July 2011 - 04:31 PM

Thanks Shelley. You're right about same symptoms and different diagnoses. I think that we tend to do that a lot. Thanks for the soft warm hug, right back to you. Gizelle

#14 debonair susie

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Posted 06 July 2011 - 04:15 PM

What a wonderful thread you began, Gizelle!

It brought about a melding of great information through the experiences of many of "Our Awesome Sclero Family Members)! :emoticons-line-dance:
Special Hugs,

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