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Extreme Fatigue Support Group

DJW

Forum Monitor
Yesterday was the first day in several years that I felt normal. It was great. Maybe I've turned the corner. Well today turned out to be a do nothing but sleep kinda day. Disappointing.
 

UnXmas

Banned
I was writing a post and then I clicked on the wrong thing and my post went away. Ahhhhhhhhhhh! I have been what I call "tired" for years. Some folks say tired. Some say exhaustion. Some say fatigue. I have not slept well for years. I sleep in a recliner because of my hip arthritis and my shoulder joint disease. I am sick and tired of being sick and tired. I was journaling for a while and the first thing I wrote in my journal every morning was......I'M TIRED. I took Lunesta for sleep for a few years but that is a dangerous drug and I would not recommend it. I tried Melatonin. I have never had a sleep study, but I would like one, as I have found myself occasionally waking up with a snoring sound and my mouth open. I live alone so I have no idea if I snore. I take Seroquel ( a psychiatric drug ) every night before I go to bed and that makes me tired and really helps me get to sleep. But I wake up at least twice every night. And recently, in the early morning hours I am waking up with arthritis and joint pain and so then my mornings suck. Doctors always ask me how many hours of sleep I get a night....I DON'T KNOW ! Maybe some folks have a form of narcolepsy ? I don't know anything about that condition, but I saw a commercial on television recently about it. I have been "tired" since at least 1996, that is when I went to my PCP and told her "why do I feel like a 96 year old when I am only 36 years old". The last 20 years have really been downhill for me as far as my health. One person on here wrote about participating in activities and being tired. I agree, it is hard to participate in ANYTHING when your body is so tired which makes your brain drained of energy too.
Hi Ann Morgan, when I experienced insomnia as a side effect from prednisone, the only med that sent me to sleep was Amitriptyline (also an antidepressant). When I was on prednisone was the only time I wasn't fatigued - prednisone gave me a ton of energy, but awful, awful insomnia.

Now I'm no longer on prednisone, and so I'm back to suffering extreme fatigue. I'm still taking Amitriptyline, and it allows me to get a very good night's sleep every night, and I wake up early in the morning feeling like I've had a good rest - first thing in the morning is the only time of day I feel I have some energy. Unfortunately sleeping so well doesn't mean I don't get tired, though. Being ill means I'm tired in the day, no matter how well I've slept.

I just mention Amitriptyline because one of the reasons it's so helpful to me is that it allows me to sleep even though I have extreme discomfort and sometimes pain (stomach pain, discomfort due to bladder problems, and cramps in my legs). I haven't found anything to actually stop the discomfort and pain, but Amitriptyline allows me to sleep through it. So it may be something you want to look into if it's pain that's keeping you awake. If you're on another psychiatric med you may not be able to get a prescription for it though, as they may cause problems if taken together, but I thought I'd mention it.

You mention narcolepsy - I believe I have a form of narcolepsy, though it's never been problematic for me, so I've never sought a formal diagnosis or medical help for it. My whole life I've had weird sleep behaviours - walking and talking in my sleep, and more unusual activities, such as getting dressed, moving the furniture around, taking showers, etc. in my sleep. I also have night terrors occasionally. And I can sleep absolutely anywhere, any time of day, no matter how noisy it is or what else is going on. Once I actually fell asleep during a rectal examination - there were no sedatives involved - and that kind of confirmed for me that there was something very abnormal about the ease with which I fall asleep!

I'm not sure about the connection between narcolepsy and fatigue though, as the sleepwalking has been with me all my life, whereas the fatigue came only when my health started failing, which was in my teens.

I do know that there are many forms of narcolepsy, and that there are other sleep disorders. But I'm not sure you should suspect you have narcolepsy if your only sleep-related symptom is fatigue, and the fatigue has only come on since you've had other illnesses. The illnesses you have and their interference with your sleep is bound to make you exhausted.

Don't give up on seeking a way to get a good night's sleep. There are a lot of remedies out there, and there may be one that can help you.
 

nogutsnoglory

Moderator
Day 2 of Nuvigil update. No energy but more diarrhea. If the diarrhea doesn't stop I may need to stop this trial. Most people seem to respond within a few hours on the drug so the fact that I don't feel anything is upsetting.
 
The fatigue I get from my Crohn's is so crippling. I cannot do much, and when I do finally muster up strength to accomplish something, I have to rest for days after. It is so annoying, especially because people just assume that I am lazy. I am not lazy, I'm just so exhausted!
I know the feeling I just want to do something without it being such a chore just to do it, I hate when everyone says you just need to rest I am over resting, I dont know about you
 
Hi UnXmas: Thank you so much for your input. I WAS on Amitriptyline in the late 1990's. My PCP gave it to me and I did not know it was also a psychiatric drug ( my doc never told me THAT part ). Anyway, I was on Lunesta for about five years. Lunesta, as far as I know is supposed to only be used short term. Lunesta is a very powerful drug and I am glad I am not taking it anymore. I had night-eating while on the Lunesta and what also I call "sleep driving" while on my way to work ( the medicine was STILL in my system ). I don't ever want to take Lunesta again. I AM currently taking some psychiatric drugs and one of them is Seroquel. I take that RIGHT before I go to bed and it helps me get to sleep. I don't know why I wake up every two hours at night. It could be my bladder. It could be sleep apnea too because I have caught myself a few times waking up with my mouth open and a snoring noise. I live alone so I have no idea if I snore. The other day I had a busy day and I was exhausted. I also went to bed later that evening than normal. I actually slept five hours in a row !!!!!!!!! I don't remember the last time I slept five hours in a row. I sleep in a recliner because I have hip arthritis and I have joint disease in my left shoulder. Someday I would like to take a sleep apnea test. I have only taken Prednisone once in my life and that was when I had Optic Neuritis in 2001. I took it for two weeks. I had NO diarrhea and NO pain, it was the best two weeks of my life ! But it did cause insomnia and it did make me have quite an appetite. As far as sleep goes, I have some headphones and a portable CD player that I can use when I go to bed in my recliner. I have eight different relaxing music CD's and this helps me get to sleep too. I can manage to get to sleep without Lunesta, but I cannot stay asleep very long. The Seroquel and the music help me get to sleep. Thanks for your help. Sorry this post is so long.
 
Day 2 of Nuvigil update. No energy but more diarrhea. If the diarrhea doesn't stop I may need to stop this trial. Most people seem to respond within a few hours on the drug so the fact that I don't feel anything is upsetting.
In my experience with Modafinil, I felt WORSE for a few days when I started due to the side effects. However, once my body adjusted and the side effects went away I did find a small benefit within an hour or so of taking it.

The important thing to remember is that you aren't going to fill drugged up. You won't experience a "high" or a "rush" so the effects of the drug can be very slight and therefore some people who don't actually have fatigue, and take it recreationally or as a study-aid report that it hasn't worked for them. The reason I mention this is just so that you are aware of what to expect :). And apologies if I'm telling you stuff that you already know.

Thanks, I'm just going to stop for now and resume it again in the very near future. See if it's a culprit.
How did this go? back on it yet? Again, in my experience the greatest benefit was gained after an extended period of time. Perhaps give yourself a trial period of a week or two, see how it does go.

For myself, Modafinil has limited effect. It doesn't really give me the push I need. There's some effect, but not enough.

However, I need to also mention (which I think I may have done already either in this thread or elsewhere on the website) that I have been diagnosed with Idiopathic Hypersomnolence (IH). Just to muddy the waters a little bit. Essentially it's a known sleep disorder, there's an imbalance in the GABA system, and Modafinil often isn't sufficient to treat the symptoms of I

With that in mind, and after my consult with my sleep physician yesterday, it may not be very useful for me to keep talking about fatigue and Crohn's in the one sentence, as it would appear that now we are more certain than ever that my fatigue isn't solely Crohn's related.
 
roy: How did you find out you had IH ? Did you have a sleep study ? I was just wondering because I have not slept well in years and I am always tired. I have always wondered if I have sleep apnea. Doesn't the body heal while it is sleeping ? I took Lunesta for five years previously. I would never take that again. I tried Melatonin a long while back. I now take Seroquel for my mental health issues, and it makes me tired after I take it at bedtime and I fall asleep, but I cannot stay asleep. I wake up at least three times a night.
 

nogutsnoglory

Moderator
I started up on nuvigil again yesterday. So far don't feel a difference. I'll give it a little trial though.

I was also debating a sleep study Ann, but wouldn't any sleep study be abnormal considering we are in a lab, and someone is watching us while we have wires on.
 
nogutsnoglory: I have been sleeping in a recliner for over 7 years because of my hip arthritis and problems with both of my shoulders and my back isn't in the best shape either. So, if I DID have a sleep study, I would have to sleep in a recliner. Also, if I had wires and such attached to my head I would not be able to go to the bathroom to pee ( I get up twice a night ). I don't think I could ever do a sleep study unless they accommodated me. My insurance probably wouldn't cover it either ?
 
Ann Morgan you can ring a bell and they will let you go to the bathroom. It's part of the study Sleep disturbances . I am pretty sure you can call your insurance company and ask them if they will cover it.

hope this helps
 
At the beginning of May of this year I started to become very exhausted. It was something I really noticed. I even marked it down on my DayPlanner. Then the next day I wrote it down again. Then the next day, and the next day. Finally I just quit writing it down. After I started to become exhausted I started to have a major change in my bowels. I went from having diarrhea for 17 years to being constipated. The first two weeks I had one bowel movement a day and it was very firm and I had to push. Then the third week into May I had constipation so bad that I had to push very, very hard and the stool would barely come out of my body. Around that same time I took four Ducolax laxative pills. NOTHING HAPPENED AFTER TAKING THE PILLS ! I really knew something was wrong after that. From the beginning of May to around June 20th I lost 20 pounds. I had a loss of appetite. I was scared to eat, I think. I mean, why eat if it isn't going to come out of your body without pushing so hard you might just have a heart attack doing it. My hemorrhoids were not too happy with this constipation thing either. I finally got in to see a new Gastroenterologist and I had a colonoscopy recently and I am waiting for the biopsy results. But a lot of other things started to happen around the same time. I have arthritis in my neck, well THAT started to really bother me and I could hardly move my neck. I have problems with the shoulders too, and my left shoulder started hurting like hell. Even my hip arthritis was hurting me in the early AM hours each day, it woke me up and I could not get back to sleep. So all these things are connected. The exhaustion, the change in my bowels and the arthritis and joint pain. My feet even hurt, and now I have custom orthotics in my shoes ( I had never had my feet hurt before ). So, since May my health has been really changing. I was always tired anyhow, before the exhaustion started, but my tiredness was something I had been able to manage each day. But the exhaustion that I started to feel in May was something different. I am going to PT for my neck and shoulders. I really want pain medication but my doctors are not the kind to give me any. I sort of want the pain pills because I get grouchy when I am in pain. Some folks get the opiates prescribed to them so easily, but I never do. I was on hydrocodone for three months once and I really liked it. I took prednisone once too and I was in heaven for two weeks. Thanks for listening. Gotta go to bed now. Spending too much time on this computer, no wonder I cannot sleep !
 
I'm so glad I found this group.

I developed mild fatigue, diagnosed as CFS following probably glandular fever just before I was 16 (I am now 27). Despite what happened next I still think it's a separate issue to my subsequent problems.

It was mild and manageable with a little care.

When I was 19 I developed the bowel troubles and the fatigue worsened. Got signed off sick for work. Usual battles on and off to get disability benefits.

Then when I was 22 I got joint problems/pain and again the fatigue worsened.

Now i'm at a point where I can do very little. I actually fantasise of going to bed for a whole week! I hate getting up in the morning for a few hours then having to spend the afternoon asleep.

In June i was found to be suffering from severe anaemia, so I now have that to contend with. I am on iron tablets (also had two transfusions as an emergency it was that bad) which are helping. I am no longer dangerously anaemic I have been downgraded to significant and I am now getting more tests to diagnose my issues on that basis at a new Hospital. I feel they will not give up on me unlike my previous one who declined to try and diagnose me any more, and declined to monitor me, hence the emergency situation!
 
Day 2 of Nuvigil update. No energy but more diarrhea. If the diarrhea doesn't stop I may need to stop this trial. Most people seem to respond within a few hours on the drug so the fact that I don't feel anything is upsetting.
Hi all -- I thought I'd share a couple experiences I have had taking medicines and supplements to help fatigue brought on by Crohn's.

First, I inject of B12 subcutaneously once a week. Since B12 is absorbed in the ileum, our odds of absorbing it are near compromised. And since B12 is required for the proper metabolism of ferritin/iron, it's a must. I'm also currently evaluating whether to do an IV infusion of a whole cocktail of vitamins because consuming them orally just doesn't have the same punch for us.

Then I have my ferritin and iron storage panels checked every 6 weeks (including iron binding capacity & transferrin) and evaluated by Hematology. They give me an infusion of Iron dextran as needed to keep levels high enough.
Many times doctors will look only at your hemoglobin, which may be fine, even though you have almost no ferritin storage. The result is you have enough red blood cells but they are smaller than they need to be.

I have taken both Nuvigil and Adderall. Nuvigil is the new kid on the block and has gotten a lot of attention, but it did not pack the punch of Adderall, which does usually give me a real jump start. However, Aderall causes rapid dehydration soon after ingestion, so it must be used strategically, preferably after a full meal and 3 huge glasses of water, with fluids being used continuously after.

I don't love the idea of taking Aderall, and I don't take it every day, but on the other hand, I also believe in using every single tool we have at our disposal to improve our quality of life. I hope these thoughts are helpful.
 
The fatigue I get from my Crohn's is so crippling. I cannot do much, and when I do finally muster up strength to accomplisgeh something, I have to rest for days after. It is so annoying, especially because people just assume that I am lazy. I am not lazy, I'm just so exhausted!
I feel ya, I just started entyvio about 9 weeks ago, and it has makes me so tired i just dont want to do anything, and i feel too like people judge you and just assume your lazy. My crohns has always made me so tired, but this is worse, it has seemed to take my desire away for just functioning like a somewhat normal person. But I have an awesome doctor who really listens to me, he has had no idea what to do and told me to see what the people on forums like this may suggest, and someone gave me a great lead, to try adhd meds and I found it crazy but after alot of research, and some talk with my doctor he thought it was a good idea to treat my extreme fatigue, and I do mean this is nothing a nap or good night sleep CAN fix, and I a sure you feel the same, as narcolepsy and wanted to start me on provigil, the lowest dose and ajust as we go, but of couse my insurance needed approval because it is so expensive, and the said ritalin is way cheaper, even on the $4 walmart perscription with no insurance. I took ritalin 5mg twice a day, it worked great for a couple of days, but I thought the mg needed to be stronger, but found that adderall is better and had less side effects so long story short I am now on adderall 10mg twice a day, and I feel so much better. It is not like I am jittery and buzzing around like a crazy person , but a normal functioning person who can actually accomplish a days tasks. I have not tried to do anything to crazy, but I am good till around 7:00 at night starting taking around 7am. I have been on this one for about two weeks. So if you are willing to look outside the box one of these meds might be a good option to try.
provigil 200 mg
ritalin 5mg or 10mg 2 times a day
adderall 5mg or 10mg 2 rimes a day
The adderall and ritalin you have to start with a lower dose and adjust to what you need



I hope this helps, sorry to go on for so long just wanted not to leave out anything
 
I have been out of remission for about three years. I have had varying degrees of symptoms in that time. Fatigue has been a constant though. I work retail- its hard physical work. My husband is not so patient, his answer is don't work so hard at work so I can get all "my" stuff done at home! Easy for him to say! I just do the best I can.

I have had my Vit D and B checked- I take 50,000 of Vit D a day to get my number from 18 to 89. MY B is normal at 450, Thyroid normal. I still feel like I am dragging my way through the day.
I would dearly love to give up CD so I could feel "normal"!

Any suggestions? Anything I may be over looking?



Lauren
Dont think I am crazy but provigil, which is used for narcolepsy a lower dose of course, but it s expensive, so ahhd meds are about the same when you dont have adhd it has the opposite effect working as a stimlant, ritalin 5mg twice daily was my first dosage, but didnt work so well after about a week so I found that adderall is stronger an works quicker, and I love it, I am not jittery and buzzing around but I feel like a normal functioning person. I started with 5mg twice a day and after a week moved up to 10mg twice a day, this seems to do the trick, you can go higher, but I dont want t feel high just normal. So here you go my suggestion, I hope this helps, it helped me
 
I got a b12 shot the other day and wonder if dr will prescribe for me to do them at home more often.
A few years ago I had Optic Neuritis in my left eye. I started with Solumedrol for three days ( IV ) and then I took Prednisone for two weeks. My eye improved significantly after that. My Specialist Doctor started me on B12 injections after that. I did them at home, I believe, once a month. I did not continue to see that doctor and then I also no longer took the B12 shots.

A few years later my B12 was really low. So my Primary Care Physician sent me to a Hematologist. I went to the Hematology office one a month for year to get the B12 shots there. I still don't understand why I could not do the shots myself at home. Why go to a Hematologist !

Then I had no insurance for a year. So, no B12 shots then.

Well, I got a new Primary Care Physician recently and he checked my B12 and said I needed to start taking B12 again. I told him that in the past I had given myself the shots at home. For some reason I contacted my Pharmacy and they said that the B12 shot medicine was going to no longer be available ? So, now I am taking over the counter B12 vitamins from the drugstore, per my Primary Care Physician. I still think the shots are more effective and I think I will call my Pharmacy again to see what is going on with the B12 medicine.

I believe I have been B12 deficient for quite a long time and I should have been continuously taking it during the past few years. Well, I will see if the over the counter B12 vitamin pills really work the next time I get my blood checked. My Primary Care Physician is monitoring my B12 levels.:Flower:
 
I'm so glad I found this group.
In June i was found to be suffering from severe anaemia, so I now have that to contend with. I am on iron tablets (also had two transfusions as an emergency it was that bad) which are helping. I am no longer dangerously anaemic I have been downgraded to significant and I am now getting more tests to diagnose my issues on that basis at a new Hospital.


Welcome StarGirrrrl. I am a new member here too and I have learned so much since I have joined.

I have iron deficient anemia also and I have had it for a while. I don't know exactly when I was diagnosed with it. In 2009 I had a routine blood test at my current Primary Care Physicians office. A few days later they called me at work and told me that I needed to go to the hospital as soon as possible to get a blood transfusion because my iron levels were very, very low. Inside of my head I was thinking "SAY WHAT ? ". After work I had to pick up my vehicle at the garage, then I had to go home to feed my cats. After that I drove to the hospital. I was admitted overnight and I was given two units of blood. And then after that was all done I started taking two iron pills every single day for the past five years. I have a brand new Primary Care Physician now and he gave me a blood test when I first saw him. He told me that I no longer needed to take my iron pills every day. I was a bit hesitant to stop taking the pills, but I trust him so I quit the iron pills. My iron had better not get low again because he decided to take me off of the pills ! It will make me mad if I have to have a transfusion again.

I am also taking a B12 vitamin and a D3 vitamin.

:bigwave:
 
Does anyone else feel guilt over their fatigue? I've worked about 4 days the past 2 weeks and I'm feeling so guilty even though my boss is understanding.

I also can't remember what it feels like to feel well, to have energy. How do people get up, get ready, go to work, etc? I used to be one of those people!
 
dear stelarjess: I totally understand where you are coming from. I used to have a job 5 1/2 years ago. I worked at a bank for 24 years. I could meet deadlines, I could multitask, I could handle millions of dollars every day, I worked well with others, I cross-trained other employees, I knew how to do almost everything in the department I worked in. I could think and concentrate and focus and had a great memory. Now that is all gone. Between my mental illness issues and all of my physical health issues I am now on Disability. Right now there is no way I could get up at 5am every morning and work an 8 hour day. If I leave my apartment for a few hours to go to doctors appointments, classes, or run errands I feel like I have ran a million mile marathon ! I will feel physically and mentally empty. I am 54 years old now.

I cannot believe that when I was about 33 years old I was a vegetarian, I rode my bicycle about 15 miles every weekend, I walked 20 minutes every morning before work and I lost about 50 pounds. Wow, I actually felt good and I had energy then. What the heck happened ? I wish I was that person again.
 
dear stelarjess: I totally understand where you are coming from. I used to have a job 5 1/2 years ago. I worked at a bank for 24 years. I could meet deadlines, I could multitask, I could handle millions of dollars every day, I worked well with others, I cross-trained other employees, I knew how to do almost everything in the department I worked in. I could think and concentrate and focus and had a great memory. Now that is all gone. Between my mental illness issues and all of my physical health issues I am now on Disability. Right now there is no way I could get up at 5am every morning and work an 8 hour day. If I leave my apartment for a few hours to go to doctors appointments, classes, or run errands I feel like I have ran a million mile marathon ! I will feel physically and mentally empty. I am 54 years old now.

I cannot believe that when I was about 33 years old I was a vegetarian, I rode my bicycle about 15 miles every weekend, I walked 20 minutes every morning before work and I lost about 50 pounds. Wow, I actually felt good and I had energy then. What the heck happened ? I wish I was that person again.
Big hugs to you. I wish I was the person I used to be, too. The highlight of my day is taking a shower, changing into fresh pajamas, and getting back in bed.
 
I also can't remember what it feels like to feel well, to have energy. How do people get up, get ready, go to work, etc? I used to be one of those people!
I vaguely recall what that feels like... which is odd since I don't generally remember much.

Once you kind of accept the situation, it's as if you go on autopilot. That's how I manage anyway.. it's habit now. Half the time I have a really hard time getting my day done and I end up sleeping like a stoned person, but I do it. Other than the habit feeling, I have no clue how I manage.
 
I took Asacol a while back, and then was changed to Lialda, which I am taking now. Plus I have been taking Questran for several years. These are the only medications I have been prescribed for my Ulcerative Colitis. A lot of folks here have been prescribed quite a few medications, but I have not. I am tired today as always. I think I woke up at 4am and never got back to sleep. Bummer. I rarely sleep more than 2-3 hours in a row. I am up at least twice every night.
 

nogutsnoglory

Moderator
Stopping the nuvigil for now. Did nothing for me. Maybe the dr will want to try again at a higher dose.

Interestingly I got a b12 shot and felt pretty good for one day a few days after but that didn't last. I want to see if they will give me several.
 
Does anyone else feel guilt over their fatigue? I've worked about 4 days the past 2 weeks and I'm feeling so guilty even though my boss is understanding.

I also can't remember what it feels like to feel well, to have energy. How do people get up, get ready, go to work, etc? I used to be one of those people!
Yes, more than you can imagine. I feel guilty, especially towards my family. We had so much planned... and I am the constant wet blanket. We did nothing over the summer break. I can never go anywhere with them... I don't like missing out on everything, but I feel even worse if I force others to miss out because of me.
 
At the beginning of May of this year I started to become very exhausted. It was something I really noticed. I even marked it down on my DayPlanner. Then the next day I wrote it down again. Then the next day, and the next day. Finally I just quit writing it down. After I started to become exhausted I started to have a major change in my bowels. I went from having diarrhea for 17 years to being constipated. The first two weeks I had one bowel movement a day and it was very firm and I had to push. Then the third week into May I had constipation so bad that I had to push very, very hard and the stool would barely come out of my body. Around that same time I took four Ducolax laxative pills. NOTHING HAPPENED AFTER TAKING THE PILLS ! I really knew something was wrong after that. From the beginning of May to around June 20th I lost 20 pounds. I had a loss of appetite. I was scared to eat, I think. I mean, why eat if it isn't going to come out of your body without pushing so hard you might just have a heart attack doing it. My hemorrhoids were not too happy with this constipation thing either. I finally got in to see a new Gastroenterologist and I had a colonoscopy recently and I am waiting for the biopsy results. But a lot of other things started to happen around the same time. I have arthritis in my neck, well THAT started to really bother me and I could hardly move my neck. I have problems with the shoulders too, and my left shoulder started hurting like hell. Even my hip arthritis was hurting me in the early AM hours each day, it woke me up and I could not get back to sleep. So all these things are connected. The exhaustion, the change in my bowels and the arthritis and joint pain. My feet even hurt, and now I have custom orthotics in my shoes ( I had never had my feet hurt before ). So, since May my health has been really changing. I was always tired anyhow, before the exhaustion started, but my tiredness was something I had been able to manage each day. But the exhaustion that I started to feel in May was something different. I am going to PT for my neck and shoulders. I really want pain medication but my doctors are not the kind to give me any. I sort of want the pain pills because I get grouchy when I am in pain. Some folks get the opiates prescribed to them so easily, but I never do. I was on hydrocodone for three months once and I really liked it. I took prednisone once too and I was in heaven for two weeks. Thanks for listening. Gotta go to bed now. Spending too much time on this computer, no wonder I cannot sleep !

This sounds identical, EXACTLY identical to me. I also had moderate fatigue... which changed to extreme/severe fatigue when I had my BM change from diarrhea to constipation. It switched over completely about 10 months ago. I have had to quit nearly everything since then.

Again, I definitely had fatigue before... its gone on for 10 years or so, but now... after the BM change, everything is impossible. Even showering. I walk in slow motion now. I can't go shopping or do much of anything. Standing is a big no no for me.
 
I noticed a few posts above about sleep studies. I too had one done. It didnt help me, since they basically just said... you have problems sleeping and staying asleep, and we dont know why.

I have since found out (on my own) that the Cronh's drove me to become a vampire, and that has caused my internal clock to go a bit crazy.

I've since done light therapy in the morning, and I have found it much easier to sleep at night. This won't fix the fatigue, not even close, but its one more tool... a really nice way of ensuring that I feel sleepy at the right time. If I do it consistently... I can go from a 1 (on an energy scale of 10) to a 2.

If others here have similar issues with odd sleeping behavior, I would suggest trying out the light therapy. Again, it won't cure the fatigue... but it makes it more manageable.
 
I wish more people understood Crohn's and the fatigue associated with it, and all the other manifestations it brings... like arthritis, pain, insomnia, vitamin deficiency, etc... I feel like a let down sometimes because the ones around me just don't understand. There's no faking it. And putting your best face forward all the time just doesn't seem good enough at times. If they only knew how bad you really felt. Hugs to all!
 
girlygirl: Your post mentioned thyroid nodules. Is that part of Crohn's ? I have three nodules on my thyroid and they have been there for a while. One of the nodules is growing, so I had a recently biopsy. The biopsy did not show anything bad. I am going to have regular ultra-sounds to monitor my nodules. I like my Endocrinologist. I just started taking thyroid medication ( Levothyroxine ).
 
Hi all
This is my first post here, I've been having this flare up for approx 9 months now. Due to start my first infliximab infusion next week ... don't know what to expect but willing to try anything at this point. Above all the other symptoms of crohns and many side effects of medication, the fatigue is crippling me. I can't get through a day without having to go back to bed at least once. The reaction of some people has upset me today, people who I consider good friends questioning why I've been napping and commenting I still look half asleep. How do others handle their fatigue and how can I make others understand that I have no control over it?? Feeling so fed up right now and judged because of my illness.:sign0144:
 

DJW

Forum Monitor
Hi and welcome.

I've just started Remicade. I too hope my energy comes back. My progress is measured in months and years.

Hope you start feeling better soon.
 
I have personally only attempted to treat three diseases. Crohns, which I have. Lyme disease, which my wife has, and Hidradenitis Superrativa, which one of my sons has.

I am in remission, my wife is cured of some infections and Lyme is dramatically reduced to the point she has a normal life.

I have not found the cause of the HS yet, but have found that he is heavily infected with Herpes Zoster, the chicken pox virus, in his intestinal tract. May or may not be related to his disease. Too early to tell.

From this I have gathered that many diseases are complicated. My wife's Lyme disease is a complex of at least five pathogens. My Crohns seems to be a complex of at least four pathogens, possibly five or maybe even more.

That's just my interpretation of the results so far. Of course I could be wrong.

If the disease is not easily treated or cured, it is likely a complex of pathogens.

Dan
 
Hi all. I just found this thread. I would call myself in remission, but fatigue is a huge issue for me. There is nothing medical to explain it that I know of, except maybe medication, but my physical and mental capacity is about 2-4 hours depending on what I am doing. If I do a lot one day I need to rest the next. I am currently not working. Thanks for letting me talk and know that I am not alone.
 
:bigwave: Kit, We all feel ya when it comes to fatigue! Hang in there - I wish I had better advice, but just wanted to send a note of support.
 

nogutsnoglory

Moderator
Hi all. I just found this thread. I would call myself in remission, but fatigue is a huge issue for me. There is nothing medical to explain it that I know of, except maybe medication, but my physical and mental capacity is about 2-4 hours depending on what I am doing. If I do a lot one day I need to rest the next. I am currently not working. Thanks for letting me talk and know that I am not alone.
It sounds like you suffer from post extertional malaise such is a strong sign of chronic fatigue syndrome/myalgic encephalitis (ME/CFS) usually blood work comes back normal but there are key symptoms for a diagnosis.
 
It sounds like you suffer from post extertional malaise such is a strong sign of chronic fatigue syndrome/myalgic encephalitis (ME/CFS) usually blood work comes back normal but there are key symptoms for a diagnosis.
Thanks for the info NGNG. Do you have a good place to go for information, or just Google it? I have heard of CFS, but not ME. Thanks
 
Location
UK
Hi guys, hope you are all well. If you have been diagnosed with IBD, then you cannot be diagnosed with CFS/ME is it is a diagnosis of exclusion and the symptoms must not be explained by any other condition (which it can be with IBD) - this is from UK practice and personal experience. Not trying to be discouraging and many of the techniques for CFS/ME might be of help (my brother suggests massage for muscle pain, and careful planning of activities but unfortunately when its at its worst, he has found nothing that can help the physical symptoms), but I don't want you to be chasing a false diagnosis. However, because there is no test for it, it may be that the diagnostic criteria vary across the world, so I stand very much corrected if others have a different experience. Please speak to your doctor about mental health support for ongoing fatigue, because depression is very common and if treated (through talking therapy (such as counselling and CBT) and medication) can be managed, and untreated can make the fatigue worse. Remember, mental health problems are NOT a sign of weakness, and are as important as physical problems.
Hope you guys and gals are managing ok. hugs x
 

nogutsnoglory

Moderator
Madmouse you are incorrect, many with ME suffer multiple health prob. Yes it's a diagnosis of exclusion but just because you have a condition like crohns doesn't mean you can't have another condition. That's like saying oh you have crohns so you can't have GERD. If your tests come back normal for deficiencies and your inflammation markers are low, crohns cannot explain bedridden fatigue. That's where a diagnosis like ME can come into play. Also, depression does manifest in physical symptoms but most with chronic illness like ME and crohns are depressed because of their condition. The depression comes after the debilitating aspect of illness. The medical community has a lot to learn, just because they can't explain things doesn't mean the person is depressed or crazy. Look at IBS, it's real but they don't know why.
 
Location
UK
nogutsnoglory, that is not what I was saying, and I am sorry it has come across in a way I didnt mean it. The diagnostic criteria for CFS/ME in the UK includes that if you have an inflammatory condition (even if it is in remission) you cannot get a CFS/ME diagnosis. I am not saying that people are not having symptoms and I certainly know you can have multiple conditions - I have never said otherwise. I only commented because I believe the aim of this forum is to share our knowledge and experience (mine being from personal experience with the condition, speaking to experts in more than one field about this very subject and my own professional education) and I have found it frustrating to be led down a path that is not accurate (such as the IBS issues many of us face). I acknowledge again that this may be different in different countries, and welcome any alternative knowledge and experience.
Edit - I have just found the following information and wanted to add it in. I have been doing from further research into the topic of CFS/ME as it would appear that practice (including diagnosis) differs dependent on where you live. The Centre for Disease Control website states "Be aware that a patient can have CFS as well as a co-existing illness that cause fatigue or other CFS symptoms – for example, depression or low blood pressure. If treatment of those other illnesses does not resolve the symptoms, then the person can still have CFS." which is a very different stance from UK practice and may explain why we have differing experiences. I never intended to cause offence, and I apologise again if I have. As I said, my experience is from a UK perspective and it is interesting to see not only how things vary, but how they can be contradictory depending upon country of practice (and in some areas, region or clinician).
The medical profession do have a lot to learn, and its an art not a science. There is a lot of funding in the UK (and I am sure elsewhere) into finding the cause of fatigue in IBD, especially in those where no physiological cause can be identified. For many, myself included, it is an ongoing daily battle and hopefully we will get some answers and support soon.
With regards to depression, I am aware it causes physical symptoms and that it is often linked (or rooted in) to other ongoing chronic conditions. I mentioned it because I was talking to friend with IBD who is now being treated for depression, but said they felt 'ashamed and weak minded'. I am not saying the root of the problem is depression (I have had to battle with my own GP who refused to explore any other avenues because she was convinced I was depressed), but I wanted to make sure people don't feel unable to discuss it, or feel like my friend did. I am sorry, I should have made it a separate point and made it more clearly.
 
Last edited:

nogutsnoglory

Moderator
Thanks for clarifying. It's of course sensitive since so many of us chronic sufferers often get dismissed since our disabilities are invisible. You are absolutely right that ME/CFS criteria varies by country. Here in the US we take it a lot less seriously sadly. But I see a world renowned CFS doctor who has diagnosed me so I suppose depending on where you are and the philosophy one can be given different info.
 

nogutsnoglory

Moderator
Done a couple of b12 injections now and still don't really feel any different. Anyone else try the injection route with success? How long? How much?

I'm on 1,000 ml of cyanocobalamin weekly.
 
Hi all
This is my first post here, I've been having this flare up for approx 9 months now. Due to start my first infliximab infusion next week ... don't know what to expect but willing to try anything at this point. Above all the other symptoms of crohns and many side effects of medication, the fatigue is crippling me. I can't get through a day without having to go back to bed at least once. The reaction of some people has upset me today, people who I consider good friends questioning why I've been napping and commenting I still look half asleep. How do others handle their fatigue and how can I make others understand that I have no control over it?? Feeling so fed up right now and judged because of my illness.:sign0144:
I will use this as my example. I suffer from Major Depressive Disorder. I have tried over and over again to educate my sister about my depression.....the symptoms, my feelings, the support groups, the doctors, all of my medications. I just want her to "get it". Well, after several months of trying to get her to "get it" I discovered that I was wasting all of my physical and mental energy on my quest for understanding and I was getting nowhere. Instead of using my energy to improve my health, mentally and physically, I was wasting my energy on trying to communicate to her about everything that was going on with me. Finally I just quit trying. I need all of the little energy I DO have to help myself stay healthy. I am tired all of the time too. I have been tired for years. I get all sorts of advice from every one of my doctors about what I can do about my fatigue. None of it works. I think my Endocrinologist is waiting for me to say that " I feel good " during each appointment that I have with her. But my answer is always the same " TIRED " !!!!!!!!!!
 
Hi all. I just found this thread. I would call myself in remission, but fatigue is a huge issue for me. There is nothing medical to explain it that I know of, except maybe medication, but my physical and mental capacity is about 2-4 hours depending on what I am doing. If I do a lot one day I need to rest the next. I am currently not working. Thanks for letting me talk and know that I am not alone.
My mental and physical energy is only good for a few hours

at a time during the day. "Normal" people can multi-task

by holding a job, raising kids, going to college all at the same time.

If I go to a doctors appointment, then go to the grocery store,

and then maybe pick up a prescription at the Pharmacy all

on the same day that is pretty much all I feel that I can do

that day. Sometimes I go to workshops, support groups,

or "classes" and just driving there and participating and then

driving back home is enough for one day for me. I have

participated in two "field trips" at one of the facilities I

attend and the "field trips" each lasted five hours ! I was

so fatigued after those five hours. Thanks for listening. :ysmile:
 
ME is just becoming the more politically correct term for CFS because nobody takes chronic fatigue seriously, it sounds lazy or hokey when in fact it can be completely disabling. Phoenix Rising is a great resource http://phoenixrising.me/mecfs-basics/an-overview-of-chronic-fatigue-syndrome-mecfs-2
I agree, nobody takes chronic fatigue syndrome seriously.
People just think you are just "tired". It is way more
than being just "tired". I don't think that this is something
that can easily be "cured" by just a good nights sleep,
a healthy meal, and some robust exercise. Do you think
CFS could be environmental ? I have not read up on CFS yet.
There are so many toxins in the air and the water and in our food,
how can those toxins NOT affect us ? There are so many
inflammatory and auto-immune diseases out there now.
My sister and I have way more illnesses than our own parents had.
I am 54 and she is almost 64.

Thanks for listening.
( I have not been diagnosed with CFS).
 
Hi guys, hope you are all well. If you have been diagnosed with IBD, then you cannot be diagnosed with CFS/ME is it is a diagnosis of exclusion and the symptoms must not be explained by any other condition (which it can be with IBD) - this is from UK practice and personal experience. Not trying to be discouraging and many of the techniques for CFS/ME might be of help (my brother suggests massage for muscle pain, and careful planning of activities but unfortunately when its at its worst, he has found nothing that can help the physical symptoms), but I don't want you to be chasing a false diagnosis. However, because there is no test for it, it may be that the diagnostic criteria vary across the world, so I stand very much corrected if others have a different experience. Please speak to your doctor about mental health support for ongoing fatigue, because depression is very common and if treated (through talking therapy (such as counselling and CBT) and medication) can be managed, and untreated can make the fatigue worse. Remember, mental health problems are NOT a sign of weakness, and are as important as physical problems.
Hope you guys and gals are managing ok. hugs x
I guess I have a "double whammy" on me.............
I suffer from IBD and many other physical illnesses AND
from depression and anxiety. Haven't slept well
for years. Tired all of the time.
 
Madmouse you are incorrect, many with ME suffer multiple health prob. Yes it's a diagnosis of exclusion but just because you have a condition like crohns doesn't mean you can't have another condition. That's like saying oh you have crohns so you can't have GERD. If your tests come back normal for deficiencies and your inflammation markers are low, crohns cannot explain bedridden fatigue. That's where a diagnosis like ME can come into play. Also, depression does manifest in physical symptoms but most with chronic illness like ME and crohns are depressed because of their condition. The depression comes after the debilitating aspect of illness. The medical community has a lot to learn, just because they can't explain things doesn't mean the person is depressed or crazy. Look at IBS, it's real but they don't know why.
Yeah, I agree, the medical community has a lot to learn. Sometimes I think that WE know more than our doctors !
Hey, hasn't aspirin been around for over a hundred years and they
STILL don't know how that works ?
 
@ann morgan: Thank you so much for posting and letting me know I am not alone. Sometimes I feel like a wimp and lazy. Sigh. Fortunately my husband understands my limitations and can plan accordingly. He has been a fantastic caretaker!
 
Hi i'm wellen and i am extremely fatigued...

This reads like an AA meeting and i really dont know if i should actually be here as i am completely knackered all the time and mentally i have brain-fog as thick as pea-soup. I cant say that it is at exactly the same level as there are times when i just feel weak but the mental side seems to take a temp break for an hour or 2 and i can try to focus on tasks but it never stays like this for long and then its back to brainfog.

I dont think i can 100% say i should join this group and i'm not even totally convinced i have exactly this issue - i feel like crohn's coupled with the fact i have reduced the types of food i consume to try and work out what is safe to eat has left my body lacking some key elements of nutrition but then again, we all know with IBD even if you put the correct food types in our body often is worse for it!

Sometimes i can be sat in a total stupor, like a zombie kinda doped... is that what it's like for others in here?
 
Just a quick post on fatigue. This can be dehabilitating, as you know. In my circumstance sodium replenishment is like a B12 shot. A bag of chips, small bag, or Gatorade or even a quick palm of Sea Salt helps. I do not have an issue with high blood pressure , actually it's always on the low side. I'm anemic as well, so I always think iron depletion. But a quick salt hit is my band aide.
 
@TWbuto thanks for the information. Do you think you get dehydrated easily and that is some of the cause of fatigue?
@Wellen Welcome and there are no guidelines to call yourself fatigued, we just share our issues with lack of energy, physical and brain. I hope this group can support and help you. Sometimes it is just nice to vent! As for brain fog, yes I get it too, but I think I am learning my limits and rest when I need to. I used to get that at work, something I have done tons of times I couldn't think of what I needed to do next. I am best in the morning, but only for a limited time. I can get limited physically as well. Hang in there and try to find what works for you and your body.
 
Hi wellen: I suffer from Major Depressive Disorder and Anxiety. I had a very bad breakdown in 2007. My brain has never been the same since. I know for a fact that my brain will never be able to operate at the same level as it did before the breakdown. I just cannot get all of my old abilities back. I have a lot of problems with focus, concentration and memory. I just recently finished reading a book, the first book I have read in three years because I just cannot focus or concentrate enough like I used to. My anxiety keeps me from going places and doing things, even going to the grocery store. I cannot even drive more than ten miles from my apartment. There are so many foods that I cannot eat. Right now I have a very limited diet. I have lost my appetite and I have lost my taste for most foods. I have lost 30 pounds. Keep in touch here, there are a lot of folks here who are very educated about Crohn's and Ulcerative Colitis and they should be able to help you.:rosette1:
 
Location
UK
Hello everyone - I hope everyone is feeling a bit better. I just want to write a quick personal update on my own fatigue issues in the hope someone else might find it helpful.

Fatigue stinks, its a real pain in the backside and can be completely debilitating, taking over your entire life, dominating every minute of every day and prevents anywhere near normal function. This is tough, and I found myself desparing and heading rapidly towards a dark place - the fatigue seemed total and never ending, requiring hours asleep and when awake I was totally non functional. Even small improvements after months seemed of little value as I still felt wiped out and not able to live a normal life. During this whole time there was nothing anyone could do to help - my bloods were ok and my GI symptoms were relatively controlled. HOWEVER, things did slowly start to improve, and I was able to push myself to undertake small amounts of activity, still feeling unwell, achey, brain foggy and fatigued (that beyond tired feeling) but on reflection - better. I am now at a point where I am trying to return to work - its not easy, I find myself relying on caffeine and sugar some days, but it is now at a point where I have SOME normality back. Its not great, but it is something.

As I said, I wanted to post this in the hope it might help someone - not because I have any magic tips or cure (I wish) but to give them some hope. The very worst of my fatigue lasted for months and I was essentially bed bound - it was relentless and I simply could see no end EVER no matter how hard I tried. I hope that putting my experience that it can get better might give someone the hope that I didn't have, and acts as a reminder to me that things are better than they were, and this gives me the strength to fight each day.

Have a lovely day everybody x
 
Madmouse: Thank you for sharing your story.

I have been "tired" for a number of years. I have trouble sleeping and I have been sleeping in a recliner for 8 years because of arthritis in my hips ( and neck and shoulders ). I have a lot of physical health issues ( other than my Ulcerative Colitis) and I have mental health problems too. Starting in May of this year I started to feel "exhausted" and I had changes in my Ulcerative Colitis symptoms. I now have been having a terrible time sleeping and I wake up in the early morning hour and I have what I think is hip pain. So now I am "fatigued". The kind of fatigue, like you said, takes over your life. Today I was thinking that I just don't want to do anything anymore, I just want to stay home and rest ( I'm too tired to go anywhere ). I have been overwhelmed with many doctors visits this year. But I have been attending, regularly, workshops/classes/support groups. I don't even feel like I have the energy, right now, to continue these activities. And I need these activities for socialization so that I don't become isolated again. I am in the "brain fog" stage now. I am hoping that this current extreme fatigue is a somewhat temporary situation and that with time it will improve. I know that depression can make a person tired and hormone problems too. I am taking a very important workshop every Thursday evenings and it means a lot to me, I cannot miss these classes at a local Women's Center here.

Since I suffer from anxiety, I would not recommend drinking coffee and eating sugar. These are stimulants and can cause anxiety. I gave up coffee and candy in May. But I still can't stay away from sugary cereals. I don't miss the coffee. But I don't seem to be able to live without the sugar. And since my Ulcerative Colitis symptom changes in May, I don't have much of an appetite for a variety of foods at all. I have lost 30 pounds in the past 6 months.

I have found myself only being able to go out every other day, and then on the middle days I stay home. I have to get out of my apartment. The weather is good. I started to read a book and I would like to do that every day. I have a vehicle, so I do have transportation of my own to go places. Yesterday I was "busy". I had a Catscan and I had to lift my arms up during the Catscan. I have arthritis in my shoulders. It was very painful to lift my arms up, even a little bit ! So, today the right side of my neck hurts a lot because I have bad arthritis in the right shoulder. Today was a wasted day at home. By 5pm I shut all of my lights off and took a two hour nap in my recliner. I must feel better tomorrow because my sister is visiting from out of town for 2-3 weeks and I would like to see her as many times as I can while she is here. We got together on this past Saturday and we had bagels and a nice two hour chat.

Thanks for listening.
 
Hi! First time here.
Decided I would talk to people who are in the same boat instead of those who don't understand because they don't have Crohn's.
Was diagnosed in 1997 and have only had 1 major flare up about 7 years ago. Disease is pretty well managed with Asacol. I still have pain and diarrhea at times when I eat something but overall my situation has been pretty mild. Have recently developed acid reflux and have had a couple bouts with kidney stones as well.
My biggest issue is the fatigue!!! I get so frustrated and depressed because I am so incredibly tired all of the time. I used to have fun be involved in family and friends. Now I have no desire to go out and do anything because my energy level is nil. All I want to do is sleep. There are days when it is all I can do to stay awake at work as well as driving to and from. Caffeine doesn't work, B12 doesn't work, energy bars don't work, energy drinks just make me jittery. I try different exercise options but after 2-3 weeks I don't feel any better and by then I am bored with the routine so I stop.
I am so tired of feeling this way. I want to go out and have fun and enjoy life again! Anybody have advice????? Please help.
 
@annimal lover-- I am so sorry! We know how you feel and i wish I had some good answers for you. I am impressed you can still work. I finally had to leave my job. I was only working 4 hours and I couldn't cut it. My job was physical and mental so it took a toll on me. I am blessed to be able to not have to work for now. I don't have any wonderful solutions, except I have learned to pace myself and get at least 9 hours of sleep at night. If I do something one day, then I stay home and rest the next. I don't go out late at night except on rare occasions. I have been pushing that some, but it always let me know that I overdid it. As my husband says balance.
 
It's so good to read through these stories and hear my story! I was starting to think that I was going crazy because nobody had an answer or even acted like they cared. It does make sense that it could be caused because our immune system is constantly fighting itself. It terrifies me to think of what I am going to be like when I am older. Right now I am 44 and feel like I'm moving at the pace of a 90 year old. I could see where depression would come into play. There are days where I am in tears because I am so tired of being this way.
 
It's a major pain the the ass, for sure. Even when I start to feel better, I am still so tired all the time.

I went and shopped for boots tonight for me and my BF, but I was so tired I didn't get to do my other messages.

Last night I went to bed at 7:00p.m. I had a colonoscopy earlier, so that may have played a part (though I was given the bare minimum of meds)... but now it's 8:17 p.m. and i am ready for bed again.
 
I sleep in on the weekends which you would think would help but about 3 hours after I get up I am ready for a nap.
I never go out with friends any more. I think they have stopped asking me because I have turned them down so many times.
 
I sleep in on the weekends which you would think would help but about 3 hours after I get up I am ready for a nap.
I never go out with friends any more. I think they have stopped asking me because I have turned them down so many times.
It's how chronic illness is so isolating. Most people give up on us, and we stop putting ourselves out there because we feel bad about letting people down so often. It all just kind of dries up and peters out.
 
I sleep in on the weekends which you would think would help but about 3 hours after I get up I am ready for a nap.
I never go out with friends any more. I think they have stopped asking me because I have turned them down so many times.
That's me, on both accounts. The sleeping-in just doesnt make me feel well-rested at all. And I pretty much lost all my friends, and am spiraling towards becoming a recluse. :( But at least I have my family to keep me sane, but I feel like I am the constant wet blanket in their lives.
 
It's so good to read through these stories and hear my story! I was starting to think that I was going crazy because nobody had an answer or even acted like they cared. It does make sense that it could be caused because our immune system is constantly fighting itself. It terrifies me to think of what I am going to be like when I am older. Right now I am 44 and feel like I'm moving at the pace of a 90 year old. I could see where depression would come into play. There are days where I am in tears because I am so tired of being this way.
I was thinking the same thing. I move like a sloth now...and it keeps getting worse every year. How am I going to manage when I am 80? I guess I will be a sloth stuck in molasses.
 
Hi! First time here.
Decided I would talk to people who are in the same boat instead of those who don't understand because they don't have Crohn's.
Was diagnosed in 1997 and have only had 1 major flare up about 7 years ago. Disease is pretty well managed with Asacol. I still have pain and diarrhea at times when I eat something but overall my situation has been pretty mild. Have recently developed acid reflux and have had a couple bouts with kidney stones as well.
My biggest issue is the fatigue!!! I get so frustrated and depressed because I am so incredibly tired all of the time. I used to have fun be involved in family and friends. Now I have no desire to go out and do anything because my energy level is nil. All I want to do is sleep. There are days when it is all I can do to stay awake at work as well as driving to and from. Caffeine doesn't work, B12 doesn't work, energy bars don't work, energy drinks just make me jittery. I try different exercise options but after 2-3 weeks I don't feel any better and by then I am bored with the routine so I stop.
I am so tired of feeling this way. I want to go out and have fun and enjoy life again! Anybody have advice????? Please help.

Since you sound identical to me in every way (I literally think I am reading my old posts when I read yours)... I will give you a few little bitty tips that have helped me stay sane. I hope they can help you a little bit.

1) MORNING IS KEY!!!!! do NOT use your energy then!!! If you do, you will be almost useless by 11:00. Basically economize everything in the morning. Don't stand at all. Don't move unless absolutely necessary. If you have to prepare breakfast, make it minimal or pre-prepared.

2) If you become an indoor vampire, use light therapy at around 9ish. Light will boost your mood slightly, and will set your internal clock so you will at least be able to predict your ups and downs.

3) Consider cutting back on work. I know this may not be an option for you, but if it is at all possible... do it.

4) Consider a prescription focusing stimulant, NOT with the belief that it will give you energy, but that it will keep you from becoming a zombie. I use Vyvanse, at around 9:00 am, but I still minimize energy when I am on it. Also drink tons of water, since stimulants can cause dehydration, which can potentially make Crohn's symptoms worse.

Other than those 4... I also am trying desperately to battle constipation. For me, constipation signals the worst possible fatigue... as well as a constant sick feeling. At times, I literally have to put ice bags on me, even though my temperature is normal. Its been a horrible cycle, but I feel like extreme dieting, basically pure liquids, is helping. Not sure at all of the science behind any of this though, but I thought I'd at least put it out there.
 
Fatigue is so hard to deal with. The holidays are hard. A lot I want to do, but no motivation or energy. How does everyone keep up with life (cleaning, bills, laundry, cooking, dishes)? Even taking a shower can make me want to sit for a while. I feel like sometimes this consumes my energy and then I don't have energy to do anything fun, just want to watch TV.
Happy Thanksgiving to the people in America!
 
Hope those of you who celebrate Thanksgiving have a wonderful holiday!
I use to really get into holidays, making stuff and being with family. Now I could care less if I go to a family function or not. I would rather stay home cuddled up on the couch with my (four legged) kids!
I hate this disease!!!!
 
Fatigue is so hard to deal with. The holidays are hard. A lot I want to do, but no motivation or energy. How does everyone keep up with life (cleaning, bills, laundry, cooking, dishes)? Even taking a shower can make me want to sit for a while. I feel like sometimes this consumes my energy and then I don't have energy to do anything fun, just want to watch TV.
Happy Thanksgiving to the people in America!
Happy Thanksgiving!!

I can't clean, do dishes, or laundry anymore, so I have had to get a cleaning lady. Its expensive, but have no choice.

All my shopping is done online now. I used to love Costco, but now I can't go anymore. Most areas have grocery delivery of some sort. I use amazon fresh.

Cooking is very tough...especially for a family. I just can't stand for long enough. I'd love to have a chef :) (wayy to much money).

Showering is tough... but cold showers help.
 
Extreme fatigue is a new thing for me. The last four weeks my whole life has been torn upside down. I feel like emotionally being extremely fatigued is hard as well. Anyone else feel frustrated and depressed that you don't have energy on top of all the other symptoms.
 
Yes, to the extreme. And none of my practitioners get it. I had to listen to the rant about other disabled people pulling it together, blind and crippled, so you can too. I called her an ignorant B%tch. I get very short-tempered with it, and every night I wish I would just never wake up again. I am so done with this struggle and the lack of care.
 
It's so good to read through these stories and hear my story! I was starting to think that I was going crazy because nobody had an answer or even acted like they cared. It does make sense that it could be caused because our immune system is constantly fighting itself. It terrifies me to think of what I am going to be like when I am older. Right now I am 44 and feel like I'm moving at the pace of a 90 year old. I could see where depression would come into play. There are days where I am in tears because I am so tired of being this way.
l can really relate to your post.
When I was 36 years old, in 1996, I went to my Primary Care Physician and I told her that I felt like I was 96 years old instead of 36 years old :frown:
I am now 54 years old.
 
Hamster: You mentioned that your constipation and fatigue happened at the same time ? I had diarrhea for 17 years and then all of a sudden in May of this year I started to get severe constipation ! As soon as the constipation started, the "exhaustion" started. I have been "tired" for years, but it was manageable and I could lead a "normal" life. But in May I started with the "exhaustion". I even wrote it in my Day-Planner. In May I just wrote "exhausted" on every single day of my Day-Planner Calendar. I am back to diarrhea now ( could be from the fact that I took antibiotics in November ). But now I am at the "fatigue" level. In 2014 I had a lot of stress and worries and I just got so tired mentally, physically and emotionally.

I have so many things wrong with my physically and then I have Major Depressive Disorder. Some things that probably make me tired are: menopause, hypothyroidism ( I just started on medication this year ), B12 deficiency, iron deficiency, depression, Ulcerative Colitis, arthritis and medications.
 
Hope those of you who celebrate Thanksgiving have a wonderful holiday!
I use to really get into holidays, making stuff and being with family. Now I could care less if I go to a family function or not. I would rather stay home cuddled up on the couch with my (four legged) kids!
I hate this disease!!!!
I suffer from Major Depressive Disorder. I know what deep depression feels like. I know all about isolating. I was just in the hospital a little over a year ago because I felt totally helpless and totally hopeless. I have come a long way since then. But I now know the symptoms and signs to look out for so that I don't end up in the hospital again. If you feel that your isolating is really affecting your life and your relationships, don't be afraid to ask your Primary Care Physician about it. I am not a doctor and this is not medical advice. I am just sharing my story.

I think that our four legged friends understand us so much more than the two legged kind ! Our "forever friends" do so much to enhance our lives. Nobody gives us unconditional love like they give us. I had two "forever friends" for 12 years, my cats. They are gone now.

I hope you feel better soon and have a great December.
 
Extreme fatigue is a new thing for me. The last four weeks my whole life has been torn upside down. I feel like emotionally being extremely fatigued is hard as well. Anyone else feel frustrated and depressed that you don't have energy on top of all the other symptoms.
Do I feel frustrated and depressed that I don't have energy on top of all the other symptoms...........yes.
I don't even work any longer. I have been collecting SSD benefits for the past two years. I have mental health issues and physical health issues as well. I have been tired for years. When is the last time I felt good ? I don't remember.:frown:
 
Recently I was doing research on the Internet for what causes energy to drain, mood problems, and other combinations like fibromyalgia. Interestingly enough, my recent gene mutation results matched what I was looking at. Both my folation and methylation systems are damaged at a DNA level. These can be complicated by foods and bacteria. The enzymes and amino acids are not present or not in large enough quantity, or too much in some cases.
The important point being that dopamine, adrenaline, epinephrine, norepinephrine, serotonin, and many other body chemicals are totally out of balance, will not reabsorb, or not transform.
This leaves me looking for answers that I don't have yet, and am often too tired to chase after. But I am getting closer.
My doctor called it esoteric, even though it is a science. Since they are DNA mutations, i see a light but can't quite reach it. Still looking for a genetic specialist and nutritionist to help me find the best treatment.
 

UnXmas

Banned
I suffer from Major Depressive Disorder. I know what deep depression feels like. I know all about isolating. I was just in the hospital a little over a year ago because I felt totally helpless and totally hopeless. I have come a long way since then. But I now know the symptoms and signs to look out for so that I don't end up in the hospital again. If you feel that your isolating is really affecting your life and your relationships, don't be afraid to ask your Primary Care Physician about it. I am not a doctor and this is not medical advice. I am just sharing my story.
Just a word of warning: having mental health problems on your medical record can open the door to all kinds of discrimination. Think carefully before disclosing any mental health symptoms to a doctor.
 
Interesting Duwardian. How did you get the gene mutations diagnosed? I hope this pans out for you!

Questions to everyone: Who is still working and if you are how many hours a week?

I am not working, but at times feel like a whimp. I feel like I just need to buck up. I need to find a new line of work, but don't have and motivation/energy to think of what that would be or what I could do. Thanks for listening.

Wishing everyone a wonderful Christmas season.
 
Extreme fatigue is a new thing for me. The last four weeks my whole life has been torn upside down. I feel like emotionally being extremely fatigued is hard as well. Anyone else feel frustrated and depressed that you don't have energy on top of all the other symptoms.

I am so with you. As stated before, I finally quite my job, so I could have some of a life. I have noticed the more fatigued I get then more headaches, muscle pain and sad I get. What is weird, I will be really tired and have a hard time getting back to sleep once I sleep for a while. Any suggestions to calm down and get back to sleep?
 
Hi Kit, the test was a MAPP test from MillenniumPGT.
I worked on and off for years with the surgeries. I find this comes and goes. This is so far the longest stretch without a break, and with the most side issues requiring medications. Probably all triggered by a root canal.
I go days without sleeping properly. Sweating or other detox helps me. But mainly avoiding all ups or downs is best.
Benedryl as a sleep aid.
 
I'm taking 3x3mg of Melatonin in place of temazepam these days. I do find it helps. I also am awake a good few times per night, that's Crohns and loo visits and just waking and getting angry with myself for not having a normal routine, let alone a normal life. I am so exhausted all the time I get very little done. It's a physical and mental thing too. I'm so with understanding and identifying with you all.
 
Do I feel frustrated and depressed that I don't have energy on top of all the other symptoms...........yes.
I don't even work any longer. I have been collecting SSD benefits for the past two years. I have mental health issues and physical health issues as well. I have been tired for years. When is the last time I felt good ? I don't remember.:frown:
I also have major depression and am not on medicine for it so i should work on that. I am coming to the realization that i will most likely not work again for a long time. Hopefully not forever. I did file for disability during my 10 day hospital stay recently.However i know this can take months even years if they approve it. I am just taking it all in and one day at a time. Entiviyio is kicking my ass with side effects and gi issues not really improving. Im not very good at being patient and i know this all takes time. Glad i have family who are helping me and supporting me. I wish you the best of luck. If you have any suggestions with SSD please let me know.
 
I am so with you. As stated before, I finally quite my job, so I could have some of a life. I have noticed the more fatigued I get then more headaches, muscle pain and sad I get. What is weird, I will be really tired and have a hard time getting back to sleep once I sleep for a while. Any suggestions to calm down and get back to sleep?
I also think that the headaches and muscle pain all go together with the fatigue. melatonin and hot tea are good for sleep. Currently on steroids so they make it hard for me to sleep. Since my most recent hospitalization due to a flare up i have been on Ambien. I feel like it helps but i am still up several times a night. Sleeping was never an issue for me until the steroids. I was always so exhausted i just fell asleep. Now i physically feel exhausted sometimes even my eyes hurt because i cant sleep, but my brain wont shut off. Often feel fidgety and that i can't relax. Catch myself grinding my teeth a lot which is something new.
 
I also think that the headaches and muscle pain all go together with the fatigue. melatonin and hot tea are good for sleep. Currently on steroids so they make it hard for me to sleep. Since my most recent hospitalization due to a flare up i have been on Ambien. I feel like it helps but i am still up several times a night. Sleeping was never an issue for me until the steroids. I was always so exhausted i just fell asleep. Now i physically feel exhausted sometimes even my eyes hurt because i cant sleep, but my brain wont shut off. Often feel fidgety and that i can't relax. Catch myself grinding my teeth a lot which is something new.

I have been totally hyped up recently. A few years ago I took Lunesta for sleep but I would never take it again because of the side affects. I have been grinding my teeth more recently. And like you said, my brain won't shut off. All my psychiatrist did is increase my dose of Seroquel that I take at night from 100mg to 200mg. I don't sleep any better and now I feel all drugged up in the morning. I have only been taking the increased dose for one week. I am going to start taking 150mg starting tonight. I see my doctor again in 4 weeks. Anyhow, don't use Lunesta. I ate every night in the middle of the night....I called it Sleep Eating. When I had to drive to work in the morning I felt like I was, what I call, Sleep Driving. I was still drugged up on the Lunesta when I had to drive to work. Remember that Impaired Driving does not always mean alcohol or street drugs, it can include prescription drugs too. I wanted more medication for anxiety, but my doctor would not give me any more. I don't take any steroids, but my sleep sucks. Awake every two hours. Then I may wake up from arthritis pain too. And these construction workers at my apartment complex don't help either.....they start working at 7am !
 
I also have major depression and am not on medicine for it so i should work on that. I am coming to the realization that i will most likely not work again for a long time. Hopefully not forever. I did file for disability during my 10 day hospital stay recently.However i know this can take months even years if they approve it. I am just taking it all in and one day at a time. Entiviyio is kicking my ass with side effects and gi issues not really improving. Im not very good at being patient and i know this all takes time. Glad i have family who are helping me and supporting me. I wish you the best of luck. If you have any suggestions with SSD please let me know.
There is another support group here for disability. If you want more info on SSD and stuff like that, I would go to that thread. You will get lots of info there. Have a great Christmas.
 
I work 40 hours a week 0700-1530. I have to get up at 0530 so I can leave at 0630. There are many times that I will also have overtime. It is all I can do to drag myself out of bed, especially in the winter when the mornings are still dark. Some mornings I find it hard to keep my eyes open driving to work. I could easily doze off at the stoplights. During the day at work actually isn't too bad because I am so busy. The drive home on the other hand sucks! Talk about struggling to keep my eyes open. I find that if I do any sort of exercise after work the harder it is for me to get up in the morning. Also I can fall asleep in the recliner at the drop of a hat. I have read exercise can help with the fatigue but all it does for me is help make it worse. I think my husband is finally starting to understand what I am going through after reading some of the threads.:ysmile:
 

UnXmas

Banned
I work 40 hours a week 0700-1530. I have to get up at 0530 so I can leave at 0630. There are many times that I will also have overtime. It is all I can do to drag myself out of bed, especially in the winter when the mornings are still dark. Some mornings I find it hard to keep my eyes open driving to work. I could easily doze off at the stoplights. During the day at work actually isn't too bad because I am so busy. The drive home on the other hand sucks! Talk about struggling to keep my eyes open. I find that if I do any sort of exercise after work the harder it is for me to get up in the morning. Also I can fall asleep in the recliner at the drop of a hat. I have read exercise can help with the fatigue but all it does for me is help make it worse. I think my husband is finally starting to understand what I am going through after reading some of the threads.:ysmile:
I wouldn't call that extreme fatigue. Working 40 hours a week would be beyond impossible for me - I couldn't even consider it, I couldn't even consider half that. Extreme fatigue is something else altogether.
 
I also have major depression and am not on medicine for it so i should work on that. I am coming to the realization that i will most likely not work again for a long time. Hopefully not forever. I did file for disability during my 10 day hospital stay recently.However i know this can take months even years if they approve it. I am just taking it all in and one day at a time. Entiviyio is kicking my ass with side effects and gi issues not really improving. Im not very good at being patient and i know this all takes time. Glad i have family who are helping me and supporting me. I wish you the best of luck. If you have any suggestions with SSD please let me know.
Hi Aleshanicole, I was surprised at how fast my SSD went this time. I have applied twice before and never got anywhere with a Crohn's diagnosis or the depression that goes with it. A surgery every year, sitting on a donut at work within days, suffering...
Finally my immune system crashed and I got an ICD for that. I reapplied again, using a lawyer, and my primary immune deficiency disorder got me disabled within 4 months. I would like to say that Crohn's is not something that SSD offices recognize as debilitating, even if it is. Maybe due to the flare part, since they rarely last longer than 6 months at a time.
My advice is to push the reason you can no longer work or function. Work was torture for me for the last 14 years. I missed more than I was there, burned through vacation, sick days, and was on unpaid leave most of the time. I had at least one surgery every year. It was a huge financial burden and I was very sick. Since the system doesn't support you while you wait for the Government to figure out what is what, you go back and torture yourself with work, and are now disqualified because you can work. It makes no sense, it is a survival thing and shouldn't be like that. If you stop working, you get punished and can't have unemployment, and have to be willing, ready and able to go to work to collect, as well as actively looking for a job. Insane system...
Anyway, I was done, dying and helpless. Finally they approved me. By that time I didn't care and just wanted to curl up and die. Since then many things have fallen through the cracks and the debt collectors won't leave you alone. So, welcome to hell. Luckily, with extreme fatigue, I don't care and I don't answer the phone. I don't do paperwork, I don't clean, I don't cook, I don't shop, I rarely leave the house. But I don't care, I can't. I don't have the energy 9 days out of 10. When I do have energy, it is certainly not going to be wasted on the wrong things. I try to make it to my doctor's appointments, and to counseling. I am mainly trying not to leave a mess for somebody else to clean up when I'm dead. And with extreme fatigue, it feels like it may be anytime now. I keep opening my eyes and thinking "Damn, I'm still here."
 
durwardian: I am so sorry that you have had to suffer physically, mentally and emotionally for so long. I have not had any colon related surgeries myself. My sister has many things wrong with her health too, but she still is able to live her life. I believe she takes Prednisone and methotrexate for her RA ? She is tired all the time too. Why can't I function each day like she can ? I think the big difference between her and me is that I suffer from Major Depressive Order and Anxiety. I had a life changing major mental breakdown in 2007 and was hospitalized 3 different times that summer. I was even in the hospital for 14 days last year. I had an attorney when I applied for SSD the second time around. I had to wait 21 months for my hearing. I won my case and started to collect benefits in January 2013, along with a good chunk of backdated settlement money. My case will get reviewed every 3 years. I am already having severe anxiety about the review. If they take away my benefits I will be homeless. Thanks for listening. This post is too long.
 
duwardian: I feel the same way. I want to die peacefully in my sleep. Well,when I wake up every morning and I am still alive I pretty much say to myself "bummer" and I am quite dissappointed. I would rather lead a short, great quality of life, than a long suffering quantity of life. I don't want to live until I am 90 years old and suffer that whole time. I already feel like I am a burden to my family.
 
No, not too long. Sorry for the suffering and the ignorance this Nation's rediculous systems impose on us.
Body chemistry plays a huge role in fatigue and depression. As does any illness.
I hope that in 3 years you will be doing great. Then it won't matter. But it is of utmost importance that you know what documentation and of what issues will be important for them. Keep good records and copies, don't trust or count on the system to keep up your data.
I hear talk that the whole social security system will cease to exist in the near future. So perhaps using this time to setup a better social safety net of your own would be a positive project?
I find that solutions help put my mind at ease. Fighting the unfair and inhumane treatment is my cause and keeps me alive.
 
duwardian: Yeah, medical records are what won my SSD case. My attorneys requested every single medical record from every doctor I was seeing. I have seen 6 Specialists this year plus two PCP doctors and my Psychiatrist and was hospitailed just last year for suicidal thoughts and feeling hopeless and helpless. Thanks for your insight on the "system".
 
Not to mention that the waiting list for most specialists is months. Current waiting time for my next appointment is 5 months. By then who knows what will happen...
 
@durwardian and annmorgan: I am so sorry you have to deal with all the depression, pain and other symptoms. I wish sometimes I had a magic wand that would take away all the problems we have. Please enjoy the Christmas season and your family.

Merry Christmas my fatigued friends!!
 
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