I am right there with you on the exhaustion, and weakness issues. It is so frustrating, as you described so well, to not be able to even muster up the strength to shower and get dressed some days. I spent years not being able to do anything but make it to work each day, and it was a constant struggle just being able to get there and function.

I recently switched my primary care physician, as I was so discouraged by my declining health, and ability to function, which has not been relieved by ivig, and found out that I suffer from many vitamin/mineral deficiencies. Vitamin, B, D, Zinc, etc. I also found out that I have Hashimoto's (Thyroid) disease, and extremely low cortisol.

All of these deficiencies/conditions can really cause havoc in your body and contribute to your ability to function normally, mentally and physically. It is so easy to blame all of our issues on cvid, which does greatly contribute to our symptoms, but might not be the only cause of our symptoms.

Everyone's responses...I'm teary. I'm so sorry you, too suffer from fatigue like me...but at the same time, it's good not to be alone.

I find I can use caffeine to get me out of a tight jamb. Like yesterday, I had to drive my daughter to an ortho apt. 25 min away, and then I had to go to two stores. Halfway through the adventure, I realized I was done. So I got a strong bubble tea (caffeine and sugar boost), sucked it down and it got me home. My kids took one look at me and put me in a chair and started to clean up for dinner and put away groceries. You know you look bad when the kids voluntarily start doing stuff!

I normally don't eat sugars, because they can feed whatever virus is floating around in my system. And I don't normally drink caffeinated drinks because it gives me weird heart rhythms--BUT it will give me a safety boost of about 30 of clarity--just enough to get us home!

God bless you guys.

Teal - I really get it. I can barely get out of the door in the mornng. As it is I have been out of work for almost two weeks. I can mostly handle the sinus infections, pain, and headaches, but the fatigue is the worst. Caffeine helps, but i can only drink it in the AM - anything after that and I am up all night. Had to decrease the amount i consumed as well. There is nothing worse than feeling fatigued with insomnia. I feel so exhausted, but my mind won't rest. It really stinks, but I do count my blesses, as I have never had to be hospitalized. I have never had pneumonia to the best of my knowledge, and my asthma is fairly well under control. I dread the posibility of having to apply for SSD, and probably wouldn't qualify at this point, but sometimes I think this is in my future. My IgG levels are just barely below normal wihch is encouraging, but I just cant shake the fatigue. I take my blessing and use them to help get me through, but the financial strain is taking it's toll and there is likewise depression and anxiety that accompany everything else.

As you said, it is sad that there are others who experience the same thing, but validating to know that there are others experiencing the same thing who are able to support each other. Hope you start to feel better soon!

You guys have really taken the words right out of my mouth. I've quit complaining to my pc dr abt it Bc she just draws blood and then the nurse calls and says things are within normal range and that's that I guess. My immunologist keeps telling me i need to be patient - ive been on ivig for almost a year now - and im nowhere close to where I was hoping I'd b by now. I'm so frustrated Bc I can't do what I used to be able to, my mind doesn't seem to be as sharp as it was, memory is horrible and I just feel like crap all the time. I dont know how many times people ask me a question or tell me something and i have no idea what they just said or how many car accidents ive almost gotten into bc im so tired driving home from work. Ive also found that i have a fine line between doing too much and becoming so exhausted i just hurt all over and cant sleep, even with Ambien!

Question for you though - do you guys work and if so full time? I'm struggling so much with it right now, I'm so busy at work - put in 50 hrs last week when I should have put in about 70 and now this week I can't function and I still have so much to do and client deadlines to meet!!! I used to work 50 hr weeks all the time, no problem! I think my husband thinks I've gone off the deep end as for the past month atleast once a week I have a sobbing breakdown Bc I'm just so tired. I just don't know what to do anymore, guess I needed to vent Bc others don't understand, my boss has started looking at my like really? U need to leave early again?!?!? I just don't know what to do anymore

Dancer--I don't work outside the home, but I homeschool an 8th and a 3rd grader. It takes everything I've got to get through the day, and I often have to grab a nap. I don't know how you guys that work outside your houses do it. I really admire you all.

I cant even IMAGINE having to work a full time job, much less 50 hours. Maybe alot of the fatigue is due to the fact that you have to perform all day, god i couldnt do it, I would get so tired and snap at somebody. You guys are AMAZING! Or even homeschooling kids - you guys need to give yourself major credit to be able to get through the day. I simply couldnt do it unless I was guaranteed I could sit down and have long breaks during the day.

I am currently not working, and would have been fired by now if I was. I can barely handle the little that I do around the house anymore. I had been diagnosed with fibromyalgia 11 years ago, but have suffered from both pain and exhaustion, with the exhaustion/weakness continuously getting worse over the years.

After another round of testing and fresh eyes (new doctor) looking at my results and history, my diagnosis was changed to CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome). Crazy....Hopefully some of the things my new doc has suggested will help me to alleviate this crippling, life altering exhaustion.

I am not working right now, as I was "pushed out" of my place of employment, after 27 years. They knew I was sick, and getting the cvid diagnosis on top of the brain tumors, made me a very expensive employee for their self funded insurance program.

I was unfortunately harassed and received many unfounded complaints and accusations on my performance, and attitude until they "built up" their case on paper. My documentation, which is extensive, is proof that these accusations were unfounded. But this really doesn't matter according to my attorney, companies can and do get rid of you for any reason they want, and if they don't have one, they will make one up.

I wasn't fired, but it was heading in that direction...I was given a choice to come back and "change my attitude" as well as being told I had to take on another 30+ hours of work on top of my already full time job, or I could leave, and they would pay my full time salary for up to a year with full insurance coverage for me and my adult (age 22) daughter. Of course I had to sign a document stating that I would not sue the company or any of it's members....

You know for sure it's not worth the fight when the outplacement counselor that they hire to help you, comes into the room after the "you're a terrible employee talk" and tells you that she has never seen an hourly employee get offered a severance package as large as this, and that I should think long and hard about returning, as they could fire me for any reason, and I would get nothing but unemployment, and have no insurance coverage for my expensive illnesses.

At that point, I knew I had no choice, and it was obvious that they had been trying to force me to quit for quite awhile. I told myself even though I was devastated that my work "family" where I had spent over half my life did this to me, I would be fine, and that I could enjoy some paid time off, and then look for another job.

Unfortunately, that was the straw that broke the camels back so to speak. The horrendous stress brought on by the whole situation seems to have pushed me over the edge physically, and now I can barely function at even a 1/4 of level that I did previously. It just keeps getting worse and worse. Even ivig's monthly have done nothing to improve my issues. At this point, I have no idea how I would even be able to learn, or do a different job with this exhaustion, on top of my other physical difficulties.

I am hoping that my new doctor will be able to help me get some improvement and relief, as I have only 7 more months of pay, and then I need to be functioning again, or I will be living in a box on the street.

Sorry for the long detailed post, I just wanted to share that I totally understand the debilitating fatigue and exhaustion that so many of us suffer from.

Here's to better days ahead!

Barb

To 3kidsandadog: OMG, I am so so so sorry you have had to go through this ordeal. NOBODY should have that kind of stress put upon them, especially working there all those years. Fibromyalgia is NO JOKE, I had a aquaintance with the diagnosis, I walked her dog 45 minutes a day, 3 times a week, she was so weak she barely left the house. Her husband was a doctor so I'm sure she get validty with her diagnosis. So I cant EVEN imagine having both Fibromyalgia and CVIDS, I'm sure I wouldn't be able to work. But what a blow to your lifestyle and ego, I mean being perfectly capable of taking care of yourself too the slow progress of the disease zapping your energy, and your job just saying "see ya later". I think you were smart to take the severence package and bow out quietly. You know they would have been watching you with hawk eyes just waiting for you to do something wrong. I know how rough it is to have a major life change like your going through. Fear and anxiety takes over, and you spend all your energy trying to figure out what to do next. Don't let fear overtake you, fear takes away your hope. Hopefully this new doctor can help you out, maybe they have a support site for Fibro patients and you can possibly pick up some tips there. I know what it feels like to be chronically tired, your body is exhausted and then your mind just follows suit. Try to let go of what happened to you at your place of employment because believe me it will just worsen your health. Hopefully when you can get things under control healthwise, you can focus on some kind of other work that is better for your health. Anyways I just wanted you to know I was listening to you and I have much empathy for you. You might want to check out the anxiety support group and read other peoples postings, sometimes you can glean things that can have a positive effect in your thinking. Dont give up hope, things WILL get better. I'll put you in my prayers along with everyone that is having a difficult time with this crazy disorder. Stimpy

Barb-I so so understand. When I got a new principal at my middle school a few years ago, instead of asking me privately if I was "okay", he went with the gossip, which I ahdn't heard circulating-everyone assumed I was HIV positive. He made my life miserable. He would harp during staff meetings about teachers using too much sick leave and depleating the funds to pay for subs, etc. He denied me tenure at the end of the year, even though I had rave reviews in my file, and parent letters of appreciation in the file that had been growing over the years. On my exit paperwork, in a section where he had to rank me on several topics, he actually ranked me as "unstable & unreliable" in the physical & mental health stability column! After an EEOC investigation, it turns out that it was perfectly legal for him to put that in writing!

I ended up teaching at a charter school the following school year, and even though the principal seemed to like me, and showed compassion about my condition {I had chosen this time to be up-front rather than be ambushed later}, his supervisors didn't think my talent was worthy of the amount of sick leave I had used. I ended up subbing in the school district {that first principal I mentioned spread the word quickly not to hire me, and it actually worked}, and over last year, I worked less and less. I hadn't known about my FB yet. But it explains a lot now. The last day I was able to work, I literally did not leave my seat for the last three classes of the day {high school}. I was considered to be a 'permanent sub' there, so I pretty much knew the staff and most of the kids. You know you are in bad shape when students walk into the room and immediately ask what they can do to be helpers. At the end of the day, I waited until all the halls and the quad was clear of people before I left. I could barely walk back to my truck!

I have lost a really successful career. It's pretty depressing when I see my two college degrees on the wall, and realize they are only worth the paper they are printed on.

Shoshi

Oh goodness, thanks for the kind words Stimpy, and Shoshana, how terrible for you! I know how devastating it is to continue to push and push yourself just to be able to get to work and function normally, only to be unfairly criticized and ridiculed by your bosses and coworkers.

Unfortunately, I think it all boils down to two things....One concerns co-workers and their complete inability to understand just how difficult it is for us, and how terrible we feel most of the time, because we often "look okay". The other concerns the business, and its bottom line. We become very expensive in terms of treatment, which is life long, with no "cure" in sight. With ivig and scig costs, with a self-funded insurance program I basically got a $7000.00 a month raise after my cvid diagnosis.

It was one thing for the company to pay for my brain tumor surgery, but then I didn't "get better", and still had the other tumor lurking in my head that might need treatment as well.

Honestly, if I think like healthy business owner I can sure understand how it would be more beneficial to pay someone a years pay and insurance severance package, rather than keep them on until they retire. In the end, they can replace you at a lower pay rate, with no earned vacation, and much less insurance costs.

There were 2 other women at my company that this was done to. I'm happy to report that one of them is suing the company through the EEOC. She waited until her severance package ran out, and then went after them, and was told that no company has the right to tell you that you cannot sue for discrimination on health, age, etc.

I told her that I would be a "reference" for her in this claim if she needs me to. I am also considering filing a claim as well, as I get closer to my pay cut off date. Still muddling around with that idea. Worried that they will counter sue me. She also has qualified for disability as she has stage 4 endocrine cancer, which is not curable only treatable, and also gets monthly infusions of some type, which cost around $5000.00.

Perfectly obvious as to what they were pulling when you consider there was 3 of us, in a years time. Wonder how much they spent on lawyers devising their strategy to avoid obvious illegal maneuvers. Gotta laugh and shake my head in disbelief.

Thanks for your kinds words, and stories on your own experiences, it really helps to see that I am not alone in this struggle, even though I wish that no one else would be experiencing it.

Have a wonderful day!

Barb