CDS75
06-22-2008, 04:47 PM
Sorry guys. I know I should probably put this on the chronic fatigue board but people don't seem to answer over there.
I am having such a hard time right now. I have been in a "flare" for about 3-4 weeks now. Its not the pain that is killing me, I can handle the pain. It is the monumental fatigue that is killing me. There are no "modalities" for the fatigue.
I am 33 years old and I am completely disabled by this d**n disease! I try to stay positive. I try to stay away from "the dark place", however I am really struggling today. I have been on my couch for weeks. The last day I was out of the house was the 6th of June. I am so extremely exhausted I can barely move.
I feel so guilty right now because my 2 yr old and 8 yr old want to play so bad. They want to go to the pool and have fun like their friends, they want to go outside on the swingset, or even to the movies but their mommy is too sick. They can't even have friends over to play. How are they supposed to understand? What kind of life is this for them? They are stuck here in the house just like I am.
I am having such a hard time right now. I have been in a "flare" for about 3-4 weeks now. Its not the pain that is killing me, I can handle the pain. It is the monumental fatigue that is killing me. There are no "modalities" for the fatigue.
I am 33 years old and I am completely disabled by this d**n disease! I try to stay positive. I try to stay away from "the dark place", however I am really struggling today. I have been on my couch for weeks. The last day I was out of the house was the 6th of June. I am so extremely exhausted I can barely move.
I feel so guilty right now because my 2 yr old and 8 yr old want to play so bad. They want to go to the pool and have fun like their friends, they want to go outside on the swingset, or even to the movies but their mommy is too sick. They can't even have friends over to play. How are they supposed to understand? What kind of life is this for them? They are stuck here in the house just like I am.
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builder
06-22-2008, 07:15 PM
I was the same way. I started taking Provigil and it works real well to combat fatigue. I'd fall asleep in the middle of the day. Sometimes the fatigue would just come over me for no reason to the point where I could barely move.
CDS75
06-22-2008, 09:25 PM
I was on provigil a couple years ago. It eventually stopped working. I have been on 60mg of Adderall for 1.5 yrs but it doesn't work for my fatigue either. Thanks though.
georgi
06-23-2008, 10:48 AM
Boy, do I ever understand the FATIGUE. You really are in a hard place right now. It would be nice if a friend or family member would take the kids on an outing for the day. Other than that, you need to just work your way through it. Like my mother always said........ "This to will pass" You are in a long flare, but know that it will end. As for now, I'd call a friend and see if they could not help you with the kids. Sorry that I can not be of more help.
georgi
georgi
kirstee
06-23-2008, 01:52 PM
Try eating sugar-free, caffeine-free, low carb, lots of veggies and fruits (no bananas). The sugar may be consuming energy if hypoglycemia (commong FMS malady) is at work in your body.
Blessings,
Kirstee
Blessings,
Kirstee
lynn41
06-23-2008, 03:03 PM
Just wanted to say that I can relate. During my commute this morning to work, I fell asleep at a red light. It was just for a few seconds, but the fatigue just washed over me and next thing I knew I was waking up to a green light and people staring. Not good, I know. I didn't take lunch today - couldn't. Just clocked out, closed my door and laid my head down. It's going to be a long, long afternoon. I've found nothing yet to fight the fatigue either. :(
CDS75
06-23-2008, 08:07 PM
Lynn- have u had a sleep study? That sounds a little like sleep related fatigue.
I can't sleep during the day, ever. I can never take naps. I just lay there with my eyes wide open.
My fatigue is not a "sleepy" type. I would describe it more as a "complete lack of energy". My muscles feel weak, if I stand I feel like I need to prop myself up, going up the 14 stairs to the second floor takes an act of congress, getting my 2 yr old out of his high chair exhausts me so much I can't catch my breath by the time I am done. My big accomplishment yesterday was brushing my teeth (and had to prop myself up to do that) and putting my hair in a pony.
I truly appreciate everyones responses.
Can someone explain the sugar/hypoglycemia thing?
I can't sleep during the day, ever. I can never take naps. I just lay there with my eyes wide open.
My fatigue is not a "sleepy" type. I would describe it more as a "complete lack of energy". My muscles feel weak, if I stand I feel like I need to prop myself up, going up the 14 stairs to the second floor takes an act of congress, getting my 2 yr old out of his high chair exhausts me so much I can't catch my breath by the time I am done. My big accomplishment yesterday was brushing my teeth (and had to prop myself up to do that) and putting my hair in a pony.
I truly appreciate everyones responses.
Can someone explain the sugar/hypoglycemia thing?
Glojer
06-24-2008, 12:13 AM
CDS, I truly understand your fatigue. It has nothing to do with sleep. The fatigue was and still is one of the worse symptoms for me. That and the inability to fall asleep. The things I do to combat the fatigue is stay away from sugar, can't tell you why sugar does that but I am sure someone else can. I have been having some problems with the fatigue lately and I am beginning to think it is from some protein bars I bought to try to add some quick fixes to my healthy eating plan when I am running short on time. I have noticed the bars have quite a bit of sugar in them.
Now the other thing that has helped me is getting my thyroid in a range that has been working for me. I started taking a T3 drug called cytomel it is much better for me than the T4 drugs. I also force myself to exercise minimum times during the week when I am not doing well. You have children, that is your exercise. I remember babysitting my grandson when he was two and I was in the worse flare and didn't have the meds worked out yet. Oh, I know what you are going through.
I understand what you mean about being breathless with the fatigue. I am like that when it is bad. I wish I could send you a magic pill that will help you get up and going cause I know how you are feeling. Just finding a better diet, high in protein and low in sugar. I do eat a lot of oatmeal which is carbs but I don't seem to have a problem with that. I need to exercise, that does help and I keep my thyroid TSH around 1.0 or actually it has been around 0.4 lately these are the only things that finally helped me to start feeling like a normal person and I still have the flares but not as bad. Oh and I do take vitamins.
Glojer
Now the other thing that has helped me is getting my thyroid in a range that has been working for me. I started taking a T3 drug called cytomel it is much better for me than the T4 drugs. I also force myself to exercise minimum times during the week when I am not doing well. You have children, that is your exercise. I remember babysitting my grandson when he was two and I was in the worse flare and didn't have the meds worked out yet. Oh, I know what you are going through.
I understand what you mean about being breathless with the fatigue. I am like that when it is bad. I wish I could send you a magic pill that will help you get up and going cause I know how you are feeling. Just finding a better diet, high in protein and low in sugar. I do eat a lot of oatmeal which is carbs but I don't seem to have a problem with that. I need to exercise, that does help and I keep my thyroid TSH around 1.0 or actually it has been around 0.4 lately these are the only things that finally helped me to start feeling like a normal person and I still have the flares but not as bad. Oh and I do take vitamins.
Glojer
CDS75
06-24-2008, 01:14 PM
My diet is definately awful. I can't stand long enough to cook so my husband is our chef, among all of his other duties. He can make tacos (from the box) or he gets take out. I know its not the best, but its food.
I have had my thyroid checked many times. The doctors all say its fine.
On top of all this fatigue, yesterday I began a RA flare. Now my hands are killing me too.
I have very recently been diagnosed with sleep apnea (really hypopnea). I don't get my machine until thursday.
I also recieved my medical records from my rheumy. Got them on Saturday. My vit d level is pretty low:
Vit D 25-OH Total 31
Vit D 25-OH D3 <4
Vit D 25-OH D2 31
So I guess that might be contributing to the way I feel. Nice of the doctor to let me know.
I also saw - from bloodwork in Feb 08 that I have a high LDH. I don't think that is the norm with CFS/FM. I think reference range is 40-90 and mine was 284. Again, didn't bother my doctor. I guess I need to investigate it a bit more.
I have had my thyroid checked many times. The doctors all say its fine.
On top of all this fatigue, yesterday I began a RA flare. Now my hands are killing me too.
I have very recently been diagnosed with sleep apnea (really hypopnea). I don't get my machine until thursday.
I also recieved my medical records from my rheumy. Got them on Saturday. My vit d level is pretty low:
Vit D 25-OH Total 31
Vit D 25-OH D3 <4
Vit D 25-OH D2 31
So I guess that might be contributing to the way I feel. Nice of the doctor to let me know.
I also saw - from bloodwork in Feb 08 that I have a high LDH. I don't think that is the norm with CFS/FM. I think reference range is 40-90 and mine was 284. Again, didn't bother my doctor. I guess I need to investigate it a bit more.
Glojer
06-24-2008, 10:23 PM
CDS, looks like you need to have a sit down with your doc. I would get copies of your thyroid tests too. Docs will say everything looks ok but it may not be that good. I say this because my former doc kept telling me my thyroid was Ok but when I finally got wise to ask for a copy of the test results it was at the very top of the range. That is really not OK, just within range.
I know what you mean by being to exhausted to stand and cook, been there so many times. Just keep trying to hang in there while you work on those test results and getting yourself taken care of. Keep pushing those docs.
Glojer
I know what you mean by being to exhausted to stand and cook, been there so many times. Just keep trying to hang in there while you work on those test results and getting yourself taken care of. Keep pushing those docs.
Glojer