Fatigue?

[annekat]

My inflammation level measured by SED rate is currently normal. My doc does not include CRP or ANCA in my tests. My creatinine has always been normal. My fatigue has improved noticeably over the last few months, but it is still there and I don't expect it to ever go away entirely. I think some of it is from being out of shape, not exercising enough, and some is from permanent damage done by the disease, most notably in the lungs, although mine were less severe than others, and in the ears and eyes and nasal cavity from relentless inflammation in the past and extensive erosion and tissue damage. The results are hearing loss, occasional dizziness and vertigo, blockages and ear infections from e-tube dysfunction, nerve damage in the ears from ear infections, and double vision from erosion of the sinus bones under the eye sockets. Aside from not getting quite enough oxygen from damaged lungs, it is exhausting just dealing with all these symptoms, even though I might be in remission (though no one has said so). I also have some neuropathy left in my feet, which is most noticeable at night and can interfere with sleep sometimes. All that said, I feel I'm doing really well and am in much better shape than a year ago. I do think the fatigue will always be there on some level, even as a result of overloading the body and brain with too many activities. It has occurred to me that some of my brain cells have been destroyed, too. It sure feels like it sometimes. And then there are the meds, and like Pete, I'm usually more fatigued after taking MTX, although sometimes I barely notice it. A lot depends on stress levels for me, what else is going on and what I'm trying to deal with all at once. If Wegs is still smoldering a bit, despite low inflammation markers, stress will start to push things over the edge and fatigue may be the first thing to crop up.

[mrtmeo]

I was told I was pre diabetic three years ago, no one has mentioned it since, don't even do the test anymore. Covering their bases I guess. Can relate to neuropathy, left foot feels like jello, leg swollen, right not so bad. I have persisted and walk a mile every three days.
Dale

My mom used to have her feet and calf swell on and off.
This was the waxing and waning of the disease, but that is one of the 2 symptoms that went away.

[Thinker]

Fatigue is a common symptom of many different autoimmune diseases. Mine is better now than when I was initially diagnosed, but I don't think it will ever completely go away unless they find a cure and not just treatment for this disease. It's also exacerbated by the medications we have to take to prevent flare ups.

[jakekell]

My inflammation level measured by SED rate is currently normal. My doc does not include CRP or ANCA in my tests. My creatinine has always been normal. My fatigue has improved noticeably over the last few months, but it is still there and I don't expect it to ever go away entirely. I think some of it is from being out of shape, not exercising enough, and some is from permanent damage done by the disease, most notably in the lungs, although mine were less severe than others, and in the ears and eyes and nasal cavity from relentless inflammation in the past and extensive erosion and tissue damage. The results are hearing loss, occasional dizziness and vertigo, blockages and ear infections from e-tube dysfunction, nerve damage in the ears from ear infections, and double vision from erosion of the sinus bones under the eye sockets. Aside from not getting quite enough oxygen from damaged lungs, it is exhausting just dealing with all these symptoms, even though I might be in remission (though no one has said so). I also have some neuropathy left in my feet, which is most noticeable at night and can interfere with sleep sometimes. All that said, I feel I'm doing really well and am in much better shape than a year ago. I do think the fatigue will always be there on some level, even as a result of overloading the body and brain with too many activities. It has occurred to me that some of my brain cells have been destroyed, too. It sure feels like it sometimes. And then there are the meds, and like Pete, I'm usually more fatigued after taking MTX, although sometimes I barely notice it. A lot depends on stress levels for me, what else is going on and what I'm trying to deal with all at once. If Wegs is still smoldering a bit, despite low inflammation markers, stress will start to push things over the edge and fatigue may be the first thing to crop up.

Annekat,

Do you use oxygen? I use oxygen machine at night as my levels are a little low I think I am not quite as tired since I started using it. I think your right that that will always be fatigue with wegs. I was in remission at one point during the past aprox. 9 years, was still tired just not quite like now that I am in a flair up.

[Velma]

I also am very tired the day of Mtx and a little the day after too.

[mrtmeo]

Does anyone know if this constant fatigue is grumbling disease or something else?

[annekat]

Annekat,

Do you use oxygen? I use oxygen machine at night as my levels are a little low I think I am not quite as tired since I started using it. I think your right that that will always be fatigue with wegs. I was in remission at one point during the past aprox. 9 years, was still tired just not quite like now that I am in a flair up.

No, I don't use oxygen and it probably isn't necessary for me. I think I'm getting enough, and I function well and am able to do physical activities like walking a mile and stacking and splitting firewood, among others. I might start to get short of breath a little faster than before Wegs and the moderate damage to my lungs. But I'm doing much better than ever, so far this year, which will be fours years since dx in early April. On the other hand, I haven't had my oxygen levels checked, just occasional breathing function tests with a simple spirometer.

[annekat]

Does anyone know if this constant fatigue is grumbling disease or something else?

I guess you mean what we call "smoldering" Wegs.... I like the term "grumbling", too. I think the constant fatigue can apply at just about any stage, in varying degrees. The "grumbling" Wegs can come and go and vary in intensity, either for months or years before dx, or after remission or great improvement, during flares, which may be minor and temporary, or more serious. Even when in remission or doing very well, as I am now, I still feel the fatigue according to my activity and stress level, but I wouldn't call it "constant" or severe. I'm sure I felt some of this fatigue during the couple of years before my dx, not having a clue I had Wegs but going through a series of sinus and ear issues. I don't think I'd call it a severe or crushing fatigue until around the time of dx and thereafter, since that was my first lung involvement and the most severe illness with Wegs so far, and of course the meds were part of it. I don't feel that Wegs is currently "smoldering", despite the occasional fatigue.

[jakekell]

[QUOTE=annekat;94549]No, I don't use oxygen and it probably isn't necessary for me. I think I'm getting enough, and I function well and am able to do physical activities like walking a mile and stacking and splitting firewood, among others. I might start to get short of breath a little faster than before Wegs and the moderate damage to my lungs. But I'm doing much better than ever, so far this year, which will be fours years since dx in early April. On the other hand, I haven't had my oxygen levels checked, just occasional breathing function tests with a simple spirometer.[/QUOTE
I didn't think I was having any particular problem and one of the docs ordered a test, needed to use at night not during the day. I was quite surprised and then every January it had to be tested for 3 years in a row to make Medicare happy. I am now entitled to the have the machine for life as the test continued to show I was low a little low at night.

[annekat]

[QUOTE=jakekell;94553]

No, I don't use oxygen and it probably isn't necessary for me. I think I'm getting enough, and I function well and am able to do physical activities like walking a mile and stacking and splitting firewood, among others. I might start to get short of breath a little faster than before Wegs and the moderate damage to my lungs. But I'm doing much better than ever, so far this year, which will be fours years since dx in early April. On the other hand, I haven't had my oxygen levels checked, just occasional breathing function tests with a simple spirometer.[/QUOTE
I didn't think I was having any particular problem and one of the docs ordered a test, needed to use at night not during the day. I was quite surprised and then every January it had to be tested for 3 years in a row to make Medicare happy. I am now entitled to the have the machine for life as the test continued to show I was low a little low at night.

Hmm, that's interesting, I wonder what an oxygen level test would show for me. My WG doc is a pulmonologist, so I'd think he'd have thought of it, but he doesn't know Wegs as well as some docs and I'm not sure he's covering all the bases.