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fatigue

janasowk
0 Recommendations

Is chronic fatigue pretty much the norm for most people on here? I have pseudo-obstruction and I am a full time college student and have a busy active life, but I could seriously sleep all day if i could get away with it! Feeling run down and exhausted is how I stay even if I get tons of sleep. Its so frustrating because mentally there are so many things I want to do and feel that I can do, but physically my body just poops out on me. Anyone else burnt out???

Explore topics in this discussion:

Exercise Dehydration Provigil Post polio syndrome Movement disorders Concerta Chronic fatigue syndrome

21 replies

Zacolton

O yeah for sure it is. Usually I'm like you and I can manage it and still live a life but at least currently I can't. When symptons die down I can live my life but right now I'm really nautious and that combined with the fatigue just takes all the energy out of me. But hey, its just something we have to live with. Haven't really found anything that really works against it.

Kristin_F

Ya, I'm on a J-Tube and am beat all the time. Mayo Clinic has put me on concerta to help with the exhaustion. (Originally they put me on Provigil, but my ins. wouldn't pay for it, and we couldn't afford it) The Provigil worked better, but the Concerta helps some. I at least have enough energy to go shopping with my husband occasionally, or read without falling asleep. I still sleep 12hrs.+ a night, and usually take at least one nap during the day, but I don't feel like I'm going to fall asleep while driving anymore, and I can do some things, as long as I rest in between. I've also had to admit...sometimes if we go somewhere to go shopping (like a large mall) I have to get a wheelchair. I can walk for a while, but if I walk too long I will get dizzy from the exhaustion, so I have to admit to my husband when enough is enough and we get a chair and he pushes me.
I went from a very active life to admitting I can only do so much in a day. I would rather move a little slower and still have a life then burn out. I know it's hard being young and having these problems, but like Zacolton said you will get used to it, and you will figure out what works best for you, and you will still have a life.
If the exhaustion is too much I would talk to your Dr. If they don't want to help you, ask to go too a sleep Dr./clinic and have a sleep latency test. It is done overnight and all day. It tests how active your brain is during sleep, and how much you sleep. They may be able to help you feel at least a little better

janasowk

hah admitting that you can't do it all is really REALLY difficult!! I think what gets me into pushing myself is looking at my friends that are my age and they can pull all nighters and just keep on going, and I can barely pull off two class days a week! I need to be better at giving myself some mercy and just, like you said, admitting that my body needs a little extra tlc. I love this site though because my normal is everyone elses normal. Even if I don't feel less exausted by posting this, or don't have an automatic solution, it's just great to be heard & understood. Thanks Zac & Kristin!

Sanford

I am sooooo glad it's not just me. Last weekend, I went to the movies Sunday morning, and after getting 10 hours sleep, came home and took a 2 1/2 hour nap. I sleep in cabs, on the train, in waiting rooms, during my IV iron transfusion. It's unnerving.

Novagrad

I'm always fatigued as well. I can't eat at all. I'm always either on j-tube feedings or TPN but I'm always tired. Right now I'm on IV antibiotics again so I have to wake up by an alarm clock for my meds, but when I'm not on IV antibiotics, then I normally sleep 12 hours straight and then another hour or two during the day. I have a feeling that I also have chronic fatigue syndrome.

Mimi

cp20855

Fatigue is major issue with my husband who has nightly TPN/hydration. A couple things that help him: B12 shots (every month), EPO shots (when his hemoglobin gets too low).

Jameson

Make sure you're well hydrated. If you're dehydrated, you'll get fatigued and tired very easily. I was very dehydrated once and I could sleep for about 20 hours out of the day.

ReneeSkibum

I have been on TPN since 1995. But in 2006 I starting putting back the weight and became very bloted from it. My TPN solution was adjust many time and in Nov of 2006 the Doctor took me off of TPN. Back in 2008 I starting feeling run down and had not energy. My Dr. ran some blood work. He had me go in for Iron invusion thearpy in Nov 2088. He also has me coming for B12 shots once a month. But in Dec of 08 my headaces starting coming back and my feet and hands felt cold and tingaley. The symptons got worse in January. And my primary doctor ran more blood work and found out that my Calcium and magnesium were critical low. Also my Hemoglobin is low but my Platelets are high. Does anyone have any answer that I can talk to the doctors about. I am not to sure what will happen if the platelets are to high. I am very confused right now.

Thanks
R. Skibum

davethegardener

I have been doing HPN infusions during the night since last October. Although HPN has hugely improved the quality of my life, sleep disruptions and therefore, fatigue, has been a big challenge. I am just this week adjusting downward the volume of nighttime infusions and adding regularly a mid-day liter of HPN. The goal is to allow a bit more uninterrupted sleep, a bit more hydration, and spreading the infusions out over the day more evenly.

I hope you are monitoring your body chemistry regularly to see whether your fatigue is due to some deficit in your chemistry or maybe to dehydration (which can fatigue any of us in a heartbeat!).

Fortunately, since I am on long-term disability, if my body screams, "More sleep, more sleep!" in the morning, most mornings I can say, "Sounds good. See you later."

Good luck!

turtle

i was also a full time college student when i first went on TPN in the hospital, then at home/on campus appt...i've had problems with being chronically fatigued since the year before i was diagnosed with crohn's disease...i know exactly what its like to go to class and sleep, go to class and sleep, forget studying or HW, just class and sleep, that was it! i don't have a good solution...except that your school should have a disability student center where u can qualify for accomadations...i recieved note-taking (as i have trouble with my hands and had frequent absences), "flexible" attendance (as much as possible for a university), letters to my professors from the disability student center (i also emailed and met in person with my profs during the first week of term and throughout the term), tutoring (paid for by the school), seperate testing location w/ extended time and access to the bathroom (the reg classroom rule is if u leave for the bathroom u can NOT return, plus the extra time helped if i started to drift off and/or needed to use the bathroom as once the clock starts it doesn't stop), and transportation (my first year they had golf carts, my 2nd year i got a special permit that is basically a handicaped placcard but for the school only, no DMV one required which allowed me to park ANYWHERE (essentially)...and you can request reduced course load and not lose fin aid...or even go to part time...which might help...unfortunatly our bodies can decide what they want to do without asking our opinions, so the best you can do is to try to come to a truce with ur body...not give up what you want or need to do, but also not lose your quality of life or be so exhausted all the time that u could sleep for days!
*take care*
~turtle~

NinaBean

Hello Oley Friends,

I know for my daughter Nina Marie who had GI, Lung, Back problems, & Heart issue's the time of year makes a HUGE difference for her. Its starting to get hot here in Florida and her fatigue is at a high point right now.

Another thing that might be going on for all of you is your nutrition. I know before Nina went on Blenderized Diet and was on Formula fatigue was a big thing. I believe being on a whole of of sugar which is in most formula is not what our bodies need. This is a very personal, NON-medical belief. Nina is / has been on Blenderized Diet for a while and I can tell you it helps her.

Blessings,

Lesley Diane Marino a/k/a NinaBean
NinaBean@tampabay.rr.com
www.blenderizedDiet.com

MarieTwinTubes

It sounds like we all need afternoon naps. It was enlightening to me to see how many people have a high level of fatigue. Extreme fatigue is one of the three primary symptoms of post polio syndrome. Mine is extremely high since my polio was bulbar. The respiratory fatigue turns into mental fatigue if I do not rest intermittently. When I started using a wheelchair in 1993, it was because I had to choose between breathing and walking. I used a bi-pap for 13 years before I got my trach. I am going to talk to my pulmonologist this week about the possibility of night time non-invasive ventilation support again. The hose of the non-invasive ventilator can be attached to my trach tube instead of wearing a nasal mask.

Many of you have conditions and challenges that are much tougher than mine. I think our bodies are on the front line constantly in the fight for survival. It takes a lot of energy being tough, right?!

Cheers for life and breath,
Marie

janasowk

loving all of your feedback! thank you so much. i am doing a little experiment this month to see if switching to TPN during the day helps me feel a little more rested. normally hooking up at night makes me have to pee about 5-9 times per night!! so a full nights sleep might do a lot of good. the only drawback so far is that the TPN pump bag is soooo heavy when it is full. maybe i will have to scout out people at school to carry it for me :) i think the main thing i got out of this discussion is to not be so hard on myself when i need a break. You are so right Marie, our bodies are fighting just to keep up, they deserve the rest.

Thank you all!!
Jana

pattyjo002

I thought my husband was just depressed he just can't seem to stay awake. I keep telling him to get out of bed and get some exercise even if he just walks up and down the hall way of the house. When he does get up he is so dizzy. I am so glad to have this sight to try to understand what is happening with him.

mldelucchi

Hi Janasowk!

I'm new to this community, having just fortuitously stumbled upon it last week. We have a few things in common, feeding tube and a college career. I rely entirely on G-Tube nutrition and spent about two years of adaptation to this condition (which started in 2000).

I used to be fatigued and hopelessly weakened, but I found a way to reverse the effect. First of all, I'm not sure about the details that distinguish your medical needs and circumstances from mine. I've always relied on automated pump feeding while I sleep (which amounts to about 5 cans by the eighth hour of rest). I discovered that I cannot exert myself throughout the day as others without another 4 cans (on average) consumed throughout the rest of the day, two by early afternoon, two more before sleep. I never use the pump throughout the day, only a small syringe and cans/cups stored in a thermal pack. I take whatever time I have between classes and on breaks from my job to inject more nutrition through these convenient, portable syringes (and I haven't given up an expresso every now and then too).

I'm known widely in my workplace for insisting on taking every break legally allotted to me, but since I do my very best work, though they'll never know the reasons why, this peculiarity does not subtract from their respect. Only until now, reading the posts in this thread, has it occurred to me that others with the same condition may go about things entirely differently.

May I ask, do you take feeding throughout the day? If so, how much? Second, what formula do you use. I use 365 calorie Jevity Plus with high protein and fiber. I also partake of protein supplements from GNC, which brings up my last piece of advice...perhaps a disciplined exercise routine could reverse your fatigue.

I know that might sound impracticable, and I present this advice with the most humility possible in deference to the peculiarities of your condition, but I've managed to excel my stamina, immunity and overall energy through a rigorous fitness routine coupled with strict attention to proper nutrition. I have no stomach, only a jejunum and the like. If your condition defers, than discard whatever advise would be impracticable. If not, consider the possibilities; they've amazed me.

If you don't mind me now asking for your advise; how are you a full time college student and able to pay for your enteral formula? I'm looking, with so much anticipation and desire, for a way out of my full-time job (with its complimentary health insurance) and into full-time college studies. Are you on cobra?

Thanks in advance,

Mario

janasowk

Hello Mario!

I am actually on TPN, it's different from an enteral feeding in that it goes through a central line straight into the bloodstream, nothing has to be absorbed in the gut. I take it for 12 hours at night & have been on it since I was a few weeks old.
Fortunately, my father has amazing insurance through his job. I just turned 25 last month, so I am no longer considered a dependent, and I will be using COBRA (still through his job) until I start working. Graduation is in may so even though cobra payments are ridiculous, it will only be for a few more months.
I have started a gluten free/SCD diet that helps tremendously with the bacterial overgrowth in my bowel, I can tell a difference in fatigue since I first made this post just by that one change alone!
I have also been more gracious on myself, and if i need to take a nap after all of my classes, I do it guiltlessly!
Exercise is...well...not so much ;) TRYING to stick to something, but with 15 hours at school, and a fulltime internship, WHEN??? what kind of routine do you do? how do you keep disciplined? that is definitely where i could use some help!

Jana

mldelucchi

Thanks for your reply Janasowk!

I apologize, I should have known about your central line. I used to have one in the hospital, and just after I sent you your message the meaning of the acronym TPN suddenly re-occured to me! Sorry for the innapplicable advice!

Discipline, Janasowk, Is something I don't feel entitled to lay claim to, as I can use so much more of it in my life. I've had to take control of my health out of necessity (a sort of do or die dynamic) and being a bit obsessive sort of helps (a trait I don't prescribe to anyone). Honestly, now that I understand your circumstances, I find it incredible that you are keeping up your current level of activity with TPN! You are entitled to a certain level of fatigue.

As for exercise, my best advise is for you to find something that entices you. Appeal is the best spice for discipline. I took up rowing, which has tremendous overall health benefits. Find something you like and see if you can start hammering out some time for it, even if at the expense of other things. I could never understand why people complain about not being able to go to the gym on a regular basis, so they could run under flurescent lights, without covering any distance, without seeing anything different. How much easy, I would think, to run along side a river, or through a charming neighborhood. But many of those people can never understand my view on the matter, so do what makes sense to you.

Just one last idea, though you've probably considered it along with everything else related to your condition, is there a way to receive some high quality vitamin supplements (in liquid form) through TPN? I've benefited immensely from many things that would not have been recommended by my doctor. Hope that helps.

Good luck,

Mario

serrittia

As a former Oncology nurse I would say you should be evaluated by a good hematologist to see why your platelets are elevated. There many blood disorders that can cause this and sometimes if they are not exceedingly high you just need to be monitored. This should be decieded by the Hematologist.

serrittia

I too have psuedobrtruction of the bowel caused by the dysfunction of my autonomic nervous system. Do they know the cause of your probelm? have you ever been evaluated by a Nuerologist specializing in autonomic dysfunction.
I can only imagine how difficult it must be for a young person to be so fatigued all the time.
I was a very active person, worked full time as a nurse, loved gardening and traveling. I must say fatigue has put a damper on doing as much as I want to do. I have been on TPN with a Hickman since 1996 < with a short stint with a J tube and I think fatigue is the most difficut thing to deal with.
Do what you can and when you can and don't give up.

prettykitty

I have trouble with fatigue and it became even more of a problem after I had my GJ tube put it. My doctor told me that part of it could be from malnutrition and the other is because all my medicines are going directly into my small intestine, therefore, absorbed faster so you get the side effects quicker than you would if you swallowed the medicine.
A couple years ago, my doctor put me on a medicine called Amantadine, which is used in parkinsons's patients for movement disorders and for the flu symptoms. But, it has been shown that people who had MS that used this medicine, had less fatigue, so that's why he put me on it. It helps a little bit, so I'm not sleeping all day long.
I've had much better results for fatigue when I take a supplement powder called Twinlab Choline Cocktail. This powder has several vitamins, herbs and minerals that help with energy. I found it at Super Supplements and at GNC for about $20.00 for a container, which you use 2 tsp. in a glass of water or juice daily.

Jessie

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