I know what you are saying.....I sleep more now than ever. Not sure why....Shouldn't we feel stronger with treatment? I switched to Gammaguard and was very lethargic this past month. So, I hope it improves with my next infusion. I feel like I spend my weekends sleeping to catch up from the week. Other people seem to only need 6-7 hours of sleep a night.

There is tired and then there is tired !

I have a hard time dragging my butt out of bed after 9 hours of sleep, setting an alarm. I used to get up without alarms...early. And I feel hungover. Dunno what I would do without coffee.

In the winters esp. I spend a lot of evening time on my butt on the couch...by the end of the day I am toast (no more spoons ??).

This is a whole different kind of tired....yep, people get tired, we get exhausted.

thank you so much for posting this. I have been feeling very frustrated and alone because nobody seems to understand that I'm tired MOST of the time, and after work, I'm exhausted. it's nice to know I'm not crazy and not alone in feeling this way!! my infusions keep me healthiER, but I certainly don't have the energy like other people do.

thanks! and big HUGS!! im glad you guys are here and sharing your experiences... I still feel pretty new to this even though it's been 3 years since my diagnosis. I get so excited when I hear about people like me feeling the way I do, because I know I'm not alone. It makes me feel more normal in a way :)

Dear GMRC, I don't know your age. But I can see you sometimes
work a lot of hours. That you're tired. I am now retired. Yet.
I'm still active and have classes I take and places to be. I, too,
get exhausted. So I get what you're saying, completely.
I've only been on treatments for 4 months Some
family that know about this say, " How are you? Are you
getting better?" Well, I know it's too early to tell. And. Yes I
still have days when I completely crash. Also I've been diagnosed
with chronic fatigue. Which is also an invisible illness which
hardly anybody gets that either I'm glad that I'm on this
new treatment. I'm hopeful about not getting other
infections which I pick up in the winter.
Yes. It is frustrating and I don't have an answer for
being dismissed. Coming to this site where others
understand, helps me. Knowing that these illnesses are
real, that's most important. Learning to take care of ourselves
by resting and sleeping when we need to. That's important to
me. Thanks for your post and kinow these are not
always easy waters to navigate. But we now have our
treatments and support groups. Maybe 10-15 yrs. ago
these things may not have been available. take good care.

Hi there.
You have my full support. I know exactly how you feel. Im 35, diagnosed a year ago, started on Flebogamma infusions every 3 weeks, 5 months ago and still I feel awfully tired.
I also work 10h a day and come home exausted. I have a 2 year old daughter and in the evening Im so tired for working all day that I barely spent 1h playing with her and often go to bed before she does.
It is a little depressing and frustrating as I was expecting that with the infusions I wouldnt feel that tired anymore. But well, I have stopped having as much infections as before so maybe its working.
Hopefully my husband understands, but it seems like my life is only this: work hard, back home and hospital...

please have your vit D levels checked. I am now feeling so much better. Mine were at a low 30 the range is 30-100 some of us can even need more than a reading of 100 to feel normal. Start taking D3 now.

I was so low that I am to take 40000 a day although I forget often for the first three months. Per the MD. New research is coming out on the effects of low D read up on it.
cvid diog four years ago now.

So true about the vitamin D. My last blood work showed my level at '12'. omg. I just started taking a therapeutic dose about 2 weeks ago and I already feel a little better. Sometimes these seemingly little things get by us and the doctors. I feel like someone should have noticed this before, but oh well, I'm dealing with it now.
+-GMRC, I think we probably all really 'get it' about the fatigue thing. I have been a hard worker all of my life putting in crazy hours, going years without time off. If I had it to do over of course, I would not have given up so much, but I just did it. That kind of work makes you tired, really tired as you well know. But the CVID type of fatigue cannot be compared to overwork exhaustion. I think unless you have experienced it, one will never really understand and they probably never will. We just have to expect it. The other thing that gets me is the fact that once we get started on our infusion therapy everyone thinks that everything is taken care of. We are 'cured' if you will. I even thought that when I was first diagnosed. That's a laugh. As hard as you may try to explain, convince or make someone understand this disease, you will never really succeed. For me, that is the hardest part of CVID and all of my other autoimmune disorders. Eventually, even your dearest loved ones get bored with the whole thing. They cannot understand why you are okay one day and deathly ill and hurting the next day. It's a perfect scenario for a hypochondriac or a spoiled patient. I hate that part. I would probably think the same if I were on the other side of things. The biggest irony for me so far though is finally understanding that my treatment, my liquid gold, will not make everything all right again. It takes a little time, but eventually it dawned on me that I was not going to ever be free of this illness. Sorry to sound so pessimistic but it's just one of those days. take care

Hiya GMRC!

You've gotten some great replies and getting your Vitamin D checked could be the key for you...at one point mine was 7 and the minimum to be in range for my lab was 32.

However, fatigue has become my new life partner. Several sleep studies, taken off any PTSD meds that might be sedating, forced into a new sleep routine where i get 2-3 hours of sleep at night and I cannot take a nap during the day...For some time now I fall asleep and I do not even know it...on the phone talking to a friend. Writing an email, eating dinner...I rarely drive for fear of hurting someone else.

And...like you, everyone knew just what it was like to be tired, and BTW I had the same problem with Endomitriosis. I've been estranged from my family for some time now, but I think until you've been in it you just don't get it...For example, I do some volunteer work with combat vets, and it became very clear that I would never fully understand how they felt b/c I had not lived it. All I could do was respect it.

And I think, sometimes it is the lack of respect for what we deal with that is the problem. The lack of acknowledgment that someone hasn't walked in our shoes, and "hey, tell me more about it, so I can try to understand better"

And that is where groups like this come in. We get it. We've been there, we won't doubt you....I might suggest ignoring others or saying something like "Hmm..that sounds different than how I feel, but I see you struggle quite a bit"

In the long run, it doesn't matter if other people think you can handle it...this really isn't a "pull your self up by your bootstraps" kind of thing- It's chronic. It ebbs and flows.

Here is a funny video, that also has some useful info from a therapist...I hope you can Identify with it..I sure did. The woman in the video has Sarcoidosis, so you will hear her refer to "Sarc" a lot, but I think it still applies and I have Sarc as well...I hope you enjoy :)

https://www.youtube.com/watch?v=K5YN_pY2UBg

I agree, it does seem like nobody gets it, but how could they? Few people possess the empathy and compassion to truly understand the suffering of another person. I also agree, it's the respect that's so often missing, too. I wish my sister would listen to what's going on with me, even better, ask a clarifying question. She just looks at me oddly when I sit in the car for 10 minutes to rest before I get out and go down the steps. I've fallen asleep in my car for a couple of hours or more because I just couldn't move. When you hit the wall, you hit the wall.

The great (or not so great) thing is that we all understand it and support each other through it.