WHAT is happening , fatigue ?

    • Anonymous
      March 31, 2009 at 8:41 pm

      Hi all.

      I had my IVIG on Friday. Friday night about an hour after the nurse left, I felt really bad. I felt flu-ish. I was laying on the couch freezing cold but wearing a sweatshirt and jeans and covered with a blanket. I was cold to touch and couldnt get warm for what seemed forever. Before and during the infusion I had a fever but no reason as to why. I felt fine before and during.

      As I lay there on the couch freezing, my hubby was downstairs. Our house is big and he couldnt hear me. I wasnt able to scream for him so I lay there and weathered thru. I may have gone to the ER had he come up so it’s probably a good thing he didnt. Dont need the extra bills. I was trying to close my eyes and sleep it off and I felt like I was on a ferris wheel. My body felt like it was going up and down and around like a ferris wheel does. I finally fell asleep for maybe 45 min and when I woke up, those symptoms were gone.

      The kids were home from a movie and my stepdaughter made a mountain out of mole hill so I had to get to the bottom of the drama. Mommy was needed otherwise I would have gone to bed.

      The next day I was fine…Sunday I was fine. Monday a bit sluggish. Today, another story. I woke up feeling like I hadnt slept in days. I went to work and left early b/c I felt worse as time went by. I dont feel like I have the flu. I feel like someone opened my mouth and poured cement into me and I’m a walking blob of cement. I slept for an hour before I had to get my son from school and came home and just taking it easy. It’s almost like I’m afraid to lay down b/c I dont want to wake up worse. It’s hard for me to walk, even hard to walk down my stairs. I made an easy dinner for Connor and I and I ate. So, it’s not really flu like.
      Is this the fatigue ? My hands hurt pretty bad at the wrists otherwise all symptoms other than struggling to lift my legs are the same.

      Hubby came home with a WII fit for us…I’m excited to work on my balance.

      But, I’m going to go to bed soon….I dont know if I should take some tylenol or what. I’m kinda scared.

      For those that suffer the fatigue so bad…is this just a bad spell for me ? Is the cemented body and the feeling of not wanting to move what it feels like ?

      I have to go to work tomorrow…I’ll let ya know how things are going.


    • March 31, 2009 at 8:58 pm

      Hi Stacey, You mentioned you had a fever before. If you are sick or with fever prior to an infusion, you are not supposed to do it. Last month on the third day, Kevin had a fever before Joe (nurse) got there, but since it was the last day, we just finished it up. He was extremeley tired the remainder of the week. Incidentally my older son Nick came home from school that day, fever, tired. Slept the whole weekend. Long story short, sounds like you had the flu and ivig while sick makes you feel worse. BTW, are you still taking the premeds during the entire infusion. Just a little fyi, we switched from gammaguard to octagam this infusion (finished Thursday) by the grace of God, kevin had no reactions, this is the first time he EVER had NO reactions AND octagam being a 5% solution can infuse faster. It took 4 hours for 30g as opposed to 5 hours and 40 minutes with gammagard. I have to check to see if they have a loyalty program like gammaguard. Good luck, feel better!

    • Anonymous
      April 1, 2009 at 12:02 am

      I haven’t had an IVIG infusion since 2002, but do suffer from the extreme fatigue. I call it “hitting the brick wall.” It usually occurs if I get less than 9-10 hours of sleep, or it comes on as the day goes on. It seem to hit me hardest by the late afternoon, but usually too late for a nap. When it hits, I do not feel flu-ish, more like I have no energy at all. Getting up to use the bathroom is a chore, cooking dinner is out of the question. It hits my brain as well, & talking or even thinking straight is very difficult. Only cure for it is sleep, a good night’s sleep.

    • Anonymous
      April 1, 2009 at 5:56 am

      Stacey that happens to me everytime I get treatment. It passes but it feels like a ferris wheel for awhile, sometimes days!

    • Anonymous
      April 1, 2009 at 9:28 am

      I am quite sure I didnt have the flu. Last week I had alot of up and down days and I thought it was just that I was needing the IVIG. Why I had the fever, I dont know. My husband had bronchitis and we all were getting over a cold.

      Today I am better. Certainly not myself but not as ‘cemented’. It was like I gained 100 lbs overnight or something. Everything I did took everything I had to get it done. Today I’m about 50 percent.

      I am really stressing about something so maybe the stress is triggering a bout of fatigue ? I certainly feel for those who have the chronic every day fatigue b/c if that’s what I was experiencing, I can see why they call it debilitating.

      I”m trying to take control over the stress thing but I cant. I just have to pray that things get better.

      I do feel better today….so that’s a step in the right direction.

      Julie, how do you manage having the ferris wheel feeling for more than a day sometimes ???? Do you have to stay in bed ? Yikes.

      well wishes,

    • Anonymous
      April 1, 2009 at 10:28 am

      Stacey – I’ve gotten used to it after nearly 2 years. It was worse when I was on the schedule of 3 days in a row once a month – the weekly schedule makes the ferris wheel go a little slower. I think it depends on the batch for me as well as what is going on in my life – some batches just produce more flu-like symptoms than others. There are still days when I stay in bed unable to function but most days I can at least do a load of laundry and cook dinner. 😀 Now when that wheel is spinning [U]really[/U] fast I just do my best to sleep through it – I always feel better after a long nap. 🙂

      Also – regarding the fever – you might recall I’ve had an elevated temperature ranging from 100-101.8 since August 2006 – daily. My neuro says it is due to the inflammation of CIDP so if you were running a fever it is [U]possible[/U] that may be the reason. I can imagine your inflammation increasing with the combination of stress and sickness and naturally the sickness can make your temp go up as well. Keep an eye on it – I kept a chart for a year and a half to get a handle on what my temp was before and after treatment etc.