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Fatigue Issues

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Had my followup appointment with the pulmonologist to review my sleep study. As I suspected, it was "mostly normal" - she said I had just a few "hypopnic" (shallow and slow breathing) episodes, when O2 saturation fell to 90%, but I never got below the 90% which she said was the cut off for diagnosis of sleep apnea.

 

We discussed my chronic fatigue issues, which she felt were most probably due to combination of scleroderma, pain and the pain meds, but thought it might be beneficial to get a neurology consult as a "fresh and new perspective".

 

I am also having increased difficulty swallowing, speaking (over the past year), and walking with a newer (past few months) sensation of weakness in upper legs/hips and especially my neck and shoulders. I'm relatively ok in the mornings, but by noon or early afternoon, I'm done in by the fatigue and weakness sensation, and by evening it hurts just to keep my head up.

 

Both my rheumatologist and primary physician have addressed my complaints only with increasing my Celebrex and pain medications, which I think have only made me more sedated. I asked specifically if Plaquenil might be helpful for me, and the rheumatologist even agreed it might be a good choice, but wanted to delay this until after I had my next GI followup (next week) and more of my cardiac issues were explored and treated. I started medication for high blood pressure couple of weeks ago and am due for another ECHO soon to see if there is progression of my diastolic dysfunction. In the meantime, I feel like I'm turning into a couch potato and I spend a good 12 to 13 hours out of 24 sleeping! :emoticon-bang-head: I love my current doctors and trust their care, but can't help wondering if there isn't something more that could be done for me.

 

Anyone had success in treating fatigue through a neurologist's care? The pulmonologist wouldn't give me a script for it, but she mentioned Nuvigil might help.

 

Thanks!

 

red

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Hi Red,

 

I'm sorry the sleep study didn't provide an answer to the question of why your fatigue is so bad. It seems like nothing is ever simple with scleroderma, does it?

 

It sounds like your doctors are wondering if your excessive sleepiness and number of hours a day that you sleep mightn't be due to a condition like narcolepsy, hence the recommendation for a neurological consult. Just a guess, of course! I did look up Nuvigil and the PubMed Health has a page on it here. I think if it were me, I'd want the consult, especially considering your new muscle weakness, because that could possibly have a neurological basis too.

 

It sounds like your doctors are working to get known problems assessed and taken care of instead of just adding a new pill. That's got to be a good thing, right? My rheumatologist is that way too. He says that with each new medication there is a new set of side effects and they can be cumulative. I guess philosophically I agree, but it would be so nice if a pretty little pill could fix things~

 

I hope things look up for you soon, but in the meantime, I'm nobly and selflessly volunteering to take 2-3 hours of your sleeping time! :lol:

 

Warm hugs,


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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Hello Red

 

Fatigue...tell me about it! I sleep at least 12 hours a day and sometimes 15 without breaking a sweat. I've always attributed it to scleroderma though. Now that I've had my pacemaker put in, at my next rheumatology appointment I intend to concentrate on foot pain and fatigue, they've now become the bane of my life.

 

Take care.


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 Red,

 

I have sleeping disorders, and even the newly discovered sleeping-disorder genes no less. But I also have fatigue, and like Amanda, I put that at the top of my list of complaints. It's the peskiest little thing, because it can dampen or ruin almost any plans. Plus it either strikes without warning or is unrelenting, and neither of those is good for a comfortable lifestyle.

 

One doctor tried to reassure me by saying that "fatigue isn't fatal". Well, huh, they should try getting a good long dose of it and they'd see, it may not be fatal but it sure can FEEL fatal. In fact, sometimes I wonder if some of us misinterpret the fatigue, to think that it means we are living our last few moments, and thus leads to depression. In that regard, I suppose it does help to remember that it isn't fatal.

 

I've found some things that help with it, some that don't. I try to focus on doing a collection of little tiny things that will reduce fatigue, in hopes that it will all add up eventually. The pill approach has not worked for me. Once a neurologist tried me on Ritalin, in hopes of keeping me awake all day. I ended up walking around in circles, going from room to room trying to remember what it was I was looking for! I was so totally exhausted that I was cross-eyed, but unable to rest at all with that medication.

 

At the top of my To Do list, I always put "Rest, Refresh, Relax". That's because those are the few things I know I can actually get done on a day full of fatigue. So it gives me a sense of accomplishment, even if in the 'real world' I accomplish nothing at all.

 

I'd love to hear more from others who have dealt with fatigue, or learned to live with it, or a combination thereof.


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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You know I recently had a 2 month stretch when I didn't get out of the house once because of fatigue and foot pain. It's very comforting, Shelley, to know it's not just me struggling with fatigue and yes many days all I do is "Rest, Refresh, Relax". Glad to know I'm not the only one!


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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Red,

 

I too suffer from fatigue. I have always attributed it to having Sjogren's, Scleroderma, and Fibromyalgia. I also have very low blood pressure.

 

Have you had your thyroid checked? I have underactive thyroid and the iron I was taking for anemia (after a major bleed from watermelon stomach) interfered with the absorption of my Synthroid. Anyway, my thyroid level was off the chart. The doctor didn't understand how I could walk. I have been to a neurologist for headaches and dizziness. He thought I had orthostatic intolerance, but I just have orthostatic hypotension. I am having trouble sleeping at night due to cut back on sleep med because a side effect can be lowering blood pressure. I also am in more pain lately. I am constantly battling fatigue. Sometimes I will be out and it feels like somebody has let the air out of me like a balloon losing all of its air. I didn't help you much, but do know that you aren't alone. Fatigue is a pain.

 

Take care,

 

Nan

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Red,

Your comments about the fatigue/tiredness in your upper legs, shoulder and neck sounded very familiar. That was a very prevalent symptom of mine as well. One of the initial bloodtests that my rheumatologist ran after I was diagnosed with scleroderma was a CK or CPK test. It is a test that measures the amount of muscle enyzmes in the blood that are caused by inflammation in the muscles. It is also an indication of polymyositis, - like scleroderma, a connective tissue disease. Scleroderma and polymyositis sometimes overlap. You might ask your doctor if your CK has been checked. It sounds like your symptoms might warrant it, but that's something for you and your doctor to discuss. Poly can also be the cause of a lot of your fatigue.

 

I hope you find some solutions. We all know what you are going through and are here for you Darlin.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Have you been tested for Sjogren's Syndrome? It can make swallowing more difficult. Also, it can make the fatigue/myalgia/myositis worse. I had slow-onset sclero for about twenty years when I got secondary Sjogren's. Those symptoms became much worse after that.

 

Also, do you know how your inflammation indicators are doing (Sed Rate, CRP [c-reactive protein])? They can be very revealing of what's going on in your body. For me , these numbers are always high during fatigue/soreness episodes.

 

A little more explanation: These tests indicate whether you have inflammation going on your body. However, they are "non-specific", which means that they don't tell you what's causing the inflammation. Thus, the inflammation could be from any number of things (influenza, cancer, arthritis, etc.) Awareness of inflammation can be very helpful with these diseases. Many of us can make a good guess of our sed rates by how we feel.

 

Good luck.

 

Craig

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Red, I should have put this link in my first post. It will take you to Causes of Fatigue and the second article down is on 'Cancer-Related Fatigue' from the Cleveland Clinic. Don't let the title put you off - there is a wealth of information in it on ways to combat fatigue.

 

Hugs,


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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Hi all, thanks for your replies, I know that there's no easy answer for the fatigue.

 

I have been tested for thyroid disease countless times, even before the sclero diagnosis, because my initial symptoms, years ago, were difficulty swallowing and fatigue, along with menstrual irregularity and joint pain. Results are always "borderline low", and sed rates are usually high. I do have asthma as well so the doctors attributed the sed rate to the asthma previous to the sclero diagnosis. I don't know if they've checked CK levels - I'll need to remember to ask them at the next visit.

 

I know they are considering a Sjogren's diagnosis now, ENT doctor, speech therapist, and the rheumatologist all mentioned it as a possible cause of my voice and swallowing difficulties. The rheumatologist, at last visit, said my mouth was on the dry side and talked about a med that would increase saliva, but said he wanted to wait as he thought the medication might have some cardiac side effects. I did ask if he thought there could be a neurological problem, but he said he didn't think so. As he is one of the leading sclero specialists and clinical investigators in the Northeast, I have to trust his opinion, but it's so hard waiting all this time for them to figure it out. I have my GI followup next week and I'll see what he has to say.

 

Guess I'm not a patient patient!!

 

red

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Have you actually seen an endocrinologist? Sometimes they can figure something out that is missed by general practitioner and internists.

 

Also I found that my wording for what I'm feeling needed refining. I would feel like I didn't have the energy to walk another step and told the doctor I felt "tired." I also used the same "tired" to tell that doctor that I fell asleep whenever I sat in a chair during the day but that I couldn't go to sleep at night.

 

I later found that they were two different symptoms and not related to each other at all.

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