I am so there with you. I have been at my computr all day researching a new primary doc & getting TriCare to provide for subq now. Literally a few minutes ago, jsut as I was thinking to log off and lie on the couch, it felt like an overwhelming surge of fatigue wash over me and I HAVE to lie down now. Hard to form a complete thought as I type, even.
Shoshi

Hey there,

Have you discussed with your doc about the possiblitiy of upping your dosage? The dose should be reviewed occasionally. Sorry to hear about the fatigue. Be easy on yourself, you could have an infection. I got broncho pneumoia (barely had a cough and temp was only 99.1) and I am STILL fatigued, weeks later and 2 rounds of abx.

HI Stimpy - just an opinion - if you are depressed, I would make an appointment with a psychiatrist or nurse practitioner before I would start up on Wellbutrin. It's not that starting with a half can do you harm, but to more effectively manage the depression, a doctor needs to make sure the drug is titrated correctly. As I said, just an opinion, but I am a psychotherapist who works with psychiatrists, so just presenting an alternative choice. I really hope you start feeling better soon. Fatigue is so overwhelming, and so misunderstood by others. Good luck to you!

@Shoshi - You described perfectly how I feel, I can barely form or finish a thought. I push myself to move and "snap out of it" but I start moving and the fatigue just washes over me, sometimes making me unstable on my feet. So I sit down waiting for it to pass. I feel like a big useless bump on the log. My husband is understanding but how would you like to live with a person like me I ask myself? He is so vital and he's so happy, I dont want to bum him out so I "pretend" as hard as I can to right there with him, but I feel like I am teetering on the edge of not giving a damn. Hang in there girl.

@Kelli1b - First thing I did this morning I called my doctor and went in and had my levels drawn, will get results in 3 days. What would you consider UNDER NORMAL? If it is within normal limits, than it has to be my brain chemistry, and my own head, and then I should be working on that. But I will post my results and if it seems below normal limits I will insist my doctor figure out something to do.

@Churini: Thank-you for the advice. Your absolutely 100% right. I need to find a psychiatrist that I feel comfortable with. I do have a psychologist who is absolutely wonderful, very smart and helps me tremendously, haven't been to her in a long while, but I will make myself pick up the phone and call her office, thanks for the encourage, I need an extra push from people because I get so weak I dont know how to go forward and help myself. Thank you much, I always think I can handle things on my own and sometimes I need a little supportive feedback. Stimpy

Stimpy, I would argue that even being within "normal" range doesn't mean we are performing at "optimal" level. I've said it before and I'll say it again, docs need to treat the patient and not the levels. If your health is declining and/or having frequent infections, it may be time to up your dose. My levels were at 1000 when my new doc upped my dose because I was getting 4-5 MINOR infections per year.

Are you sleeping "soundly"? If not, maybe a sleep aid? Vitamin D? Have you had your lungs checked? If you don't have an underlying cause of the morning "phlegm" then you may have an infection in your lungs. I personally would contact my doc if I was coughing up gook in the mornings and I have a lung disease.

Don't be so hard on yourself lady. We CVID'ers are our own worst enemy, ya know? So hard on ourselves because we aren't "normal" and cant' do "normal things". Sorry if I rambled on ((hugs))

Severe fatigue can be a sign of a number of things (not necessarily related to CVID). I would strongly encourage your doctor to check your iron levels, and a regular blood workup -- RBC, etc. It cannot hurt to have a urinalysis test for protein levels. CVID patients are *VERY* prone to gastrointestinal problems, and I would ask for a multi-day stool test (G. lamblia is not uncommon, but it requires live stool samples over 3-4 day period to test). At 50+, please also keep up with all of your other regular check-ups (like colonoscopy, cancer tests, etc.).

Regarding the tiredness -- there may be some links between CVID and problems like pernicious anemia. But (personally) I really hesitate to jump to that conclusion, because it starts to get very easy to blame the CVID.

http://www.ncbi.nlm.nih.gov/pubmed/2239305

I still think that there's a link between sleep & CVID, but I have a ways to go before I find any research topics on that front.

just a heads up there is a bug going around my family has had it for the last 6 wks and i re-get it everytime another gets it...my sister who never gets sick has had it since thursday...they have high fever (of course i have had no fever with it) severe fatigue, headache, feel like passing out at standing, weakness, all over body aches....i got it the first time with the first kid 6 wks ago...mine turned to puemonia and sinus infection....it has kicked my husband's and sister's butt and they NEVER get sick so if it has kicked their butt it finally made sense why it has put me out for the count...since you are coughing stuff up maybe it is this mess going around....with 3 kids and my sister and husband getting it i have re-gotten it 5 times now...and each time it has been brutal....so just a heads up there is a nasty bug going around....i have had trouble just holding my head up that is how bad the fatigue is with this..

Yes, maybe I have a bug, been coughing up phelgm for about a month and a half (just always consider this as normal) dont know where its coming from sinises or lungs. I am just used to it. But I am having a dry cough, could turn into something. If it gets worse I will call in for antibiotics. After I had my second and last child is when all the illnesses began, and yes I always had low iron, and was on iron pills, so most definitely it has something to do with CVIDS. God those years when there was no diagnosis were unrelenting infections, I shiver when I think about it and relize now that I am grateful for gammaguard every month. But yeah, sometimes (like now) it is just a constant wave of fatigue washing over me, but it helps to know what it is caused from, it takes away from the fear factor. Thanks everyone, I will be following through with ideas and suggestions and wait for doctors call before I decide my next move. Thank-you EVERYONE.

A year ago, after my 7th bout of pneumonia, I became severely fatigued...and it never went away. I've been fighting it off an on for years--can't seem to keep up with how much everyone else does, fall behind, can't think clearly...but this was intensified. If I did anything, I would get shaky and be unable to walk very far. I couldn't go to the grocery store. I couldn't go anywhere. Doing laundry made me breathless. Putting away groceries made my limbs shake. I would have bouts of nausea if I pushed through, intense headaches...and again, the strange gait if I tried too hard to do much of anything normal. I'd break down in tears because my body was DONE. That's complete exhaustion.

I think CVID triggered Chronic Fatigue in me. My doc thinks so as well.

After 15 treatments of SubQ, I'm starting to get better. Little baby steps, little bouts of activity. I can now go to TWO stores and then cook dinner. This is HUGE.

Some days I can have three or so days of normal activity, and then I'm down again. Or be minding my own business, not doing too much, and then get slammed with flu like symptoms. It's like a fatigue roller coaster ride, but I never see the turns coming.

I posted this on one of the FB support pages, and I'm not alone. Some of us suffer from awful fatigue. The doc thinks that I'll continue to improve in tiny amounts, but we won't know the total improvement from SubQ on my fatigue for about a year. So, I'm hanging in.

Last March, about the same time that I was dx'd with CVID I was dx'ed with Sleep Apnea. So I got a machine. I have yet to see any difference, but I"m still using it. I really hoped THAT would be it. But, so far...not.

I'm also on the Vit D roller coaster--but even after increased dosages of that (50k/week for a few months), I don't see a huge improvement of any kind--however, most CVID patients don't use b12, folic acid or D properly and we need extra--so I do that too.

I hope you find your answers! Blessings.

OMG Teal Orca, I'm am SO SORRY that you have had to first of all suffer from 7 bouts of pneumonia, I CANT IMAGINE. That would pretty much be the scariest thing in the world. I have had it a few times, and the third turned into Sepsis. I know the severity of what it can do to your health, My God, my prayers are with you. I completely understand your fatigue, just the fact that you can get to the grocery store and cook a meal is marvelous, pat yourself on the back. I bet you are frustrated and want to do more, huh? Do you think vitamin D helps? I take 1 Alive multivitamin a day, B complex and B12. God you poor thing. The breathlessness, the fatigue, the nausea and on top of it sleep apnea! That is where your breathing pattern is interrupted right? Do you use a C-pap machine? I think alot of have this in common, the Sleeping! Trying to get a solid nights sleep! I wake up a minimun of 6 times a night. My mind wants to achieve things during the day, but I cannot get my body to work, so I am always RESTING on the couch. Anyways I am hoping for you that with continued SubQ treatments you will progressively get better, I mean I KNOW YOU WILL. Keep up the FAITH. And hope things are better for you today. Debby

Stimpy--I'm holding my own. I'm adjusting to my new normal...some days are easier than others--as it is for everyone on here. Thanks for the kind words :) Blessings to you!

OMGoodness.....TealO stole the word form my mouth-the fatigue washes over you from head to foot, not missing a single inch of you! I have even described to my docs it's like heat radiating from a radiator or stove. Starts in my bones and just radiates throughout my whole body.

TealOrca-we have a lot in common with the symptoms. I actually figured out by accident the other day that I have trouble walking backwards. I was on a rare trip inside a store after an appointment, and I was using the cart as a 'walker' essentially {too embarrassed to use the scouters}. I tried to 'back out' of an isle, and seriously could not do it. Yesterday at home, I tried again in my kitchen, my hand on the counter for support, and I managed a few steps backward, but my legs were weak and I nearly fell twice!

Today, it's my legs and hips...
Shoshi

Well you guys - your not alone. Sometimes I dont even venture out some days for fear the exhaustion just might zap me in public. Like I will get so weak I cant get back to my car and Ill just collapse and people will just be looking at me like WHAT? So I am very cautious on what I can handle outside the house, I completely understand the fatigue just washing over you like a flush, there is absolutely no use fighting it, it just makes things worse and creates more frustration, it makes me sad though, and I am patiently waiting for things to change. So Blessings to both of you and just try to keep doing the best you can and try not to get sad or frustrated. I am learning to accept it and not fight it for now, we just need to take care of ourselves and nuture ourselves and try to get good sleep and eat healthy. Rest as you need it. No shame to hanging onto the cart or using an electric cart - just use it if you need to. Stimpy

Just need to say to TealOrca - That is EXACTLY how I feel with my fatigue!! Taking a shower and getting ready in the morning is EXHAUSTING! I don't bother to even style my hair or wear makeup, because holding a blow dryed and curling my hair is exhausting. Getting dressed is exhausting. I will have periods of time during the day when I feel normal, but once I do anything even remotely taxing, I am exhausted and feel ill.

Churini - not to make light, but just the THOUGHT of putting on makeup or combing my hair EXHAUSTS me. I am lucky to brush my teeth - thats it, and sometimes I bypass that. Then I get a cup of coffee and sit on the couch and "rest" until twelve oclock, then force myself to get dressed. I cant fight it anymore, I just do the best I can. So dont feel alone.