Question on Fatigue

[Patrickreed]

I've had GPA since 3/2013. I've always seemed to struggle getting my girlfriend to see my invisible illness.

I'd say fatigue has been an issue and I need help gauging it.

I work 40 to 50 hours during the week and 6 to 9 hours on Saturdays. I'd say 56 hours is a safe average. I work I.T. I sit in a chair all day. Surprisingly I find being so stationary has made things worse and amplifies my fatigue, at the end of the day I am exhausted. I do try to walk around quite a bit throughout the day at work.

Where I am running into an issue is that when I am home alone with our two kids I have a difficult time, I seem to fatigue too much too fast. They are 1 and 3 years old. I feel like my time with them is not quality when it's just me and I feel guilty becoming a bit of a zombie instead of an entertaining father.

My girlfriend wants to work more hours and needs be to be alone with the kids for full days and I'm not sure if I can do it, or do it well anyways.

Is this level of stress/fatigue normal or does it signify a bigger issue?

I know that being exhausted is normal for us, but I can't seem to get excited about spending the day alone with my kids because I know how I am going to feel....its a whole different story when super mom is there with us.

[Pete]

Hi Patrick,

Fatigue can be an issue, both with the disease and with medication side effects. I take 15 mg/week of methotrexate on Wednesday each week. I'm generally a little tired on Thursday, but I usually push through it if I have something that needs to be done.

I can empathize a bit about the little ones. My wife and I watch two of our grandkids once or twice a week. They're 3-1/2 and 2 years old and pretty energetic. (I wish I had half of their energy!) If we watch the kids on Thursday, my interaction is a little lower key than at other times.

You might want to do a couple of things to help with this. First, check with your doc to see if meds or too much work/stress might be the issue. Second, make time for at least 30 minutes of moderate exercise (brisk walks, swimming, zoom a, etc.) several times each week. Third, educate your girlfriend. Unfortunately, our disease presents in many different ways with many symptoms. Fourth, can you adjust your work schedule so that you work fewer hours? Or work from home? You may also want to explore why you feel the need to work so much (feeling indispensable, poor time management, lack of delegation, company culture, etc.).

Hope this is helpful.

[drz]

I think fatigue is our number one symptom. Five years after diagnosis and treatment it is still my main issue even though I have been in a drug induced remission for most of that time. I had symptoms of Wegs for two or three years or more before finally getting a diagnosis of Wegs. My case was then severe and it caused damage to my kidneys, lungs, hearing, balance, sinuses etc and made my neuropathy from diabetes worse. All of these issues contribute to my fatigue. Fatigue was already a problem just from my diabetes before i got Wegs. I spend about half of my time each day in bed either sleeping, napping or resting.

On good days I can usually get in a few hours of some activity. If I do much more and depete my "spoons" then I have to count of spending a couple down days to rest up and try to recharge and replace my "spoons". I think when we allow ourselves to get too run down we increase our risks of getting an infection or other physical issues that increase our risk of a flare.

For me I find some light or moderate exercise like a a slow walk (2 MPH) for a half to a to one mile also helps me with the fatigue feelings. Too much exercise or over exertion makes my fatigue worse as does too much resting with no exercise or activity unless I am run down or ill and trying to recharge.

On the up side not everyone is really impaired by their Wegs. Some people with Wegs can do super human things like climb Mt Everest, run the Iditarod, Bike cross country, run marathons, and work 16 hour days as a lumberjack or just maintain a normal active lifestyle.

Adjusting and accepting your "new Normal" after Wegs takes some time to figure out and generally involves a lot of trial and error. It depends a lot upon the severity of your Wegs, the amount of damage caused by it, your age, and the meds you now need to take to control it.

Only you can sort it out. A good doctor or counselor might be able to help you sort it out too.

[Dirty Don]

Spoons for everyone! I got'em, you get'em! Patrick...not sure the fatigue ever goes away as I still have to monitor my self quite frequently. The flip side is I have gotten this far after dx & crash...you'll get back to your kids, just gotta have patience, fortitude, and keep taking spoons as they come! Best to you.

[amy.r.kahl]

Having GPA....fatigue is just part of the disease, you're body's working extra hard to destroy healthy tissue, then there's the treatment drugs, and having to go to the doctor all time. I'm always exhausted so don't feel bad. Maybe have your gf read this forum so she'll understand more. And make sure you're including healthy sleeping habits at night.
Best wishes
Amy


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[Pete]

I've been experiencing some additional fatigue over the past couple of weeks. I had been attributing it to overexertion in getting our house ready for a family reunion. However, I didn't bounce back as quickly as I usually do. Today, I upped my pred to 5 mg from 2. I feel a bit more energetic even though today is also mtx day for me. And to cap it off, I got a cold from my granddaughter. Started the Xicam after supper. Oh well, we'll see how it goes...

[annekat]

Patrickreed, I don't know how you can work that many hours and contemplate spending days with the kids so that your girlfriend can work more hours. I'd say, consider day care, which I realize would be an extra cost, but when two people are working more or less full time, it becomes a necessity. Especially if one of them has WG/GPA. I hear so many people complain that their spouse or partner does not take their disease seriously. I live alone but get it from family members.... they realize I'm sick, but any time they see me working or getting something done, it reinforces their idea that I'm not really that sick. They don't get the fatigue thing too well. Of course, I want to work and accomplish things, not to mention keeping my house, yard, and personal effects and affairs in some kind of order. But the more I do, the more I can't do, it seems sometimes, if that makes any sense. We have to give ourselves some breaks or risk making ourselves sicker. There's something to be said for one or both parents reducing their work hours instead of increasing them, in order to maintain the home and spend quality time with the kids. That's just my impression, and I don't have all the answers for someone else.

[renidrag]

Fatigue has always been a problem, Dr. Monach in Boston is going to do a research project regarding just this. I was going to respond to this thread a couple of days ago, just too tired.
Dale

[Jason R]

My fatigue seemed to be related to my medication. I'm happy to say I found a combination that is working well for me after 4 years. I get Rituxan treatments every 6 months but am now taking 10 MG of Leflunomide daily. Finally no fatigue going on 3 months now! I was taking methotrexate weekly in combination with my Rituxan treatments previously but the fatigue which at first only lasted a day or two began to last 4 - 5 days. Before that I was taking Imuran but had issues with that as well. Everyone reacts differently to medications but I was not going to settle for feeling like crap without exhausting all of my options first. You might consider switching meds if you are in a position to do so. I goto the Mayo Clinic in Jacksonville for treatment of GPA. It's a 5 hour drive but we'll worth it!

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[annekat]

I might add that I feel a lot less fatigue since I was prescribed some asthma inhalers. I did not really have asthma most of the time, but had the typical Wegs cough with stuff dripping down from the sinuses and collecting in the bronchii. It was often hard to cough it up, but doing so would bring relief from any breathing problems, which felt like asthma. So I didn't think I had asthma, or that if I did, it was being controlled by the prednisone and MTX suppressing the reaction to allergens. That is what my WG doc/pulmy thought, too, and he didn't think the inhalers would help any WG symptoms. He was wrong on both counts. When grass season hit in May, it was really bad this year, and I had asthma and was gasping for breath a good part of the time. That scared him and he went ahead and prescribed me both the steroid inhaler and the albuterol rescue inhaler. It has been SO much better since then, especially the coughing, and I don't even have to use them that much. Once the steroid inhaler kicked in, after a few days, there was immediate relief, not only for the breathing but the WG cough as well. Whatever inflammation was in my windpipe, from WG or asthma, was subdued. I have less need now for the inhalers and think I can cut back on the steroid one which is used daily. So, the upshot is, I don't get nearly as much fatigue when I'm getting enough oxygen. That is my assessment, anyway.