Extreme Fatigue Support Group

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Was fine in terms of energy until I started the azathioprine. Since then I've been very fatigued most all of the time.
 
i was on Aza 150mg for 6 weeks and it was terrible. I was so tired, I couldn't make it through the day without a nap. It probably didn't help that my Hemoglobin was 6.8 when i started (and still hasn't improved).

Doc decided to pause the aza for a week (i'm also on Humira) to see if my hemoglobin would increase. I have been off the aza for 6 days now and have had the best 6 days I can remember! Looking forward to seeing what tomorrow's blood draw reveals...but I can FEEL the difference already. I really hope I can stay off the aza without any significant negative effect on the Humira.
 
Josepilove: I had a blood transfusion in 2009 because my hemoglobin was very low. ( I think it was 5.6 ). My Primary Care Physician sent me right to the hospital. I was only in the hospital over night and I was given two units of blood. After that I started taking 2 iron pills a day for 5 years ( ferrous sulfate, over -the-counter from the drug store ). I took the iron pills until April of this year, when my new PCP said that I did not need to take the iron pills any longer....so I guess he feels that my hemoglobin is fine now. I hope he is right and that I don't have to get another blood transfusion. I get blood draws on a regular basis from ALL of my doctors.
 
durwardian said:
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.
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I kinda feel the same, but rarely express it... explaining it is pointless. And what they don't understand is what helps others battle fatigue will NOT help us.... believe me, we've all tried it.
 
Kit said:
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.
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I went through the same thing. I had to change jobs a few times. Ultimately, I had no choice but to figure out a job I could do at home. That has kept me going for the last 8 years, BUT... now the fatigue is so intense, it causes severe reclusiveness. So I have to keep tweaking my job to minimize interaction with people. That really paints me in a corner... but the alternative of not working would cause far too much depression.

But I can do about 25-30 hours of work a week, at home, lying down, on my computer, and stay off the phone for all but 10 minutes of the day. This is definitely not how I saw myself when I was younger, and fresh out of school with all the energy in the world. But its all I can handle at the moment.
 
Ann Morgan said:
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.
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Thanks for sharing that. I did have an a lotta stress right before the switch as well... and I almost was 'expecting' the cronh's to go in overdrive (which it did). However... I have since done everything I can to minimize stress... but I'm still stuck at this bad place. But other than that, not much else has changed as far as diet or drugs. It just kinda happened.
 
Working

Hamster said:
"But I can do about 25-30 hours of work a week, at home, lying down, on my computer, and stay off the phone for all but 10 minutes of the day. This is definitely not how I saw myself when I was younger, and fresh out of school with all the energy in the world. But its all I can handle at the moment."

So what is your profession Hamster and what ideas do you have for types of jobs that are easier when fatigued? I have been in the healthcare field for a long time as Physical Therapist Assistant. I don't have many ideas and not very motivated to look. Thanks for sharing
 
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I'm glad to find this thread even though I found it late! Thanks to everyone who has shared your story. It's helpful to know that I'm not alone and to have so many data points about fatigue in Crohn's in spite of numbers that seem in the normal range. We can't measure everything, and there's something about this disease that leads to fatigue. It is NOT our fault and we are NOT lazy.

I started having digestive problems in 2001 after chicken pox at 23. Nobody could figure it out, I cut out gluten and was mostly okay. Through the years since then, I've dealt with increasing fatigue with no explanation. The digestive problems got slowly worse, too, until I had cut out more and more foods and then had lots of pain and some bleeding two years ago. I was surprised to be diagnosed with Crohn's Disease after a colonoscopy. Even though my bathroom symptoms are comparatively mild, the fatigue is NOT mild. It is my most difficult symptom to manage. In order to help myself feel a little more in control, I created a rating system (green, yellow, red) and I rate each day, then act accordingly (exhausted, crying, and irrational = red day = TV or reading . . . fatigued but reasonable = yellow day = quiet work, limiting exertion as much as possible) . . . spunky and happy without discomfort = green day = do whatever I want!) I keep reminding myself that my husband benefits from me resting wisely (I am more fun, I am able to speak clearly and think better, I am nicer to be around). I FIGHT every day the idea that I am lazy.

Over the past few years, I have slowly backed out of a normal job (first to part time, then quitting altogether) and I work for myself now, but our family is supported by my husband (I don't really make money with my business yet, but I'll get there!) I have a great husband. I also have a couple friends who deal with the fatigue of auto-immune diseases, but it's best not to talk about it with my family. They don't want to know. In fact, just yesterday, when I mentioned that my overwhelmed and stressed-out Mom (who has just been diagnosed with cancer) might want to think through her activities and rate them based on importance (i.e. save energy for the most important things and choose to let the less important things go), my Dad stabbed me in the heart. He decided to tell me all about his aunt, who was "sick all the time," but bravely kept forging ahead because she was a farmer's wife and she didn't get to rest just because she was tired. That marked the end of sharing my health journey with my family.

I get that it's hard to understand this illness without experiencing it, but what are the chances that a focused and driven woman who was very successful in life early on and who got lots of joy from learning, traveling, and experiencing life (including two graduate degrees even while I was getting sicker) all of a sudden decide to be lazy and rest all the time rather than doing fun things? Answer: she wouldn't unless she couldn't do otherwise.

Best wishes for health and energy to you all!
 
Thank you so much Christie for putting that into words! Your story makes me feel understood. hugs!
 
Christie thank you for sharing.

I wrote a long reply but erased it because I felt like I was whining. My sister has many heath issues but she gets things done and goes places and leads a normal life. If she can do it then why can't I ?:cry:
 
Ann Morgan said:
Christie thank you for sharing.

I wrote a long reply but erased it because I felt like I was whining. My sister has many heath issues but she gets things done and goes places and leads a normal life. If she can do it then why can't I ?:cry:
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I hear you! I feel like that all the time. Comparing myself to others. I finally realized I can push and do more than I should and then am no good for days. I have decided I can't create energy that isn't there. I will literally stop functioning mentally and physically.

Has anyone ever seen the spoon theory? It is a wonderful visual for explaining limited energy/fatigue.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
 
Ann Morgan said:
I wrote a long reply but erased it because I felt like I was whining. My sister has many heath issues but she gets things done and goes places and leads a normal life. If she can do it then why can't I ?:cry:
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If you could lead a normal life, Ann, you would be doing it! If it were just a matter of will power, or effort, or desire, we'd all be living happy, productive lives. There are clearly far more complex things going on. Don't blame yourself for the things you can't manage. Your sister doesn't have to cope with the same things you do, and it's not just physical symptoms that differ. She may have different people supporting her, different experiences to draw on, different emotional responses and ways of thinking. These are not things we can just control how we like. We can usually make some changes, but working out how to do so is very difficult.

You're allowed to whine, as long as the whining doesn't include you blaming yourself. ;)
 
I completely relate to this talk about comparing myself to others! I struggle against it every single day. Grr! I think about the spoon theory frequently - my husband and I use it as a "secret" code: "How many spoons would that take?"

It's especially hard to keep the right mindset (that I'm not lazy and bad) when my parents are in town (they spend the winter in Arizona, where we live). I feel negatively judged for *being* sick in the first place (I must be doing something wrong if I have a chronic disease) and then judged for not getting better and judged for not being more productive (my house is not maintained or cleaned to the standard my parents think is ideal - though I think my Mom probably has some OCD in this area). I've been what I would consider successful in my life and I still am slowly accomplishing the mission I believe I was placed on Earth to do, and it's extremely hurtful that they focus on what I am not doing rather than what I *AM* doing.

I was busy being sad and discouraged the other day on this topic when I had a little vision. I envisioned myself being an expensive and valuable low-miles-per-gallon-of-gas luxury car. God was telling me that I'm not a lemon or a junker; I am created for a different purpose and my life (at least right now) has a slow pace, but it doesn't mean I'm faulty. A Rolls Royce only gets a few miles per gallon - so do I! A smart person wouldn't waste gas in the Rolls Royce running all over town - and I don't want to waste my fuel, either! My husband took the metaphor farther and said that we don't expect a pick-up truck and a Mini to serve the same purpose, but somehow we wrongly expect people to all have the same capabilities. He prefers it if I save my fuel for the most important things: God and him! And then a friend (who also deals with fatigue) said maybe we're the expensive restored vehicles that are mostly owned for joy and love rather than hauling dirt or groceries and maybe most of our purpose is to be beautiful and inspiring - ha!
 
Christie:
I loved your post. I live in Glendale, Arizona. My sister and brother-in-law retired last year and purchased my dead mothers condo in Sun City. They will be here in January, February and March of every year. They have only been here one month and I already have a lot of stress. I have mental health issues in addition to my Ulcerative Colitis, and arthritis in my hips, shoulders and neck. I have tried to explain to my sister that I cannot physically do all of the traveling and going to events and festivals she invites me to. I keep telling her that I have a lot to consider before I go anywhere. Like: bathrooms, how long is the drive, is walking involved, is standing involved, will I be exposed to direct sunlight, what will the temperature be. They just bought a new fancy car, I am afraid to ride in it because I would not want to have diarrhea in her car. My mental stress has escalated since she arrived.

I live my life very simply. In my life going to the grocery store takes effort because of my depression. Going above and beyond my regular life things messes me up. I want her to go home NOW, but she will be here 6 more weeks. I love her, but I still want her to go home. I am tired all of the time, I can't take on any extra activities.

Well, that is my rant for today. Hopefully I can see a doctor on Monday or Tuesday because I need a game plan to jump start my "recovery" ( mental illness). Thanks for listening.
 
Christie, that post was lovely! Thanks, I shall apply it to me too. Life is unbearably hard at times. The fatigue, along with all the other health issues are a nightmare.

Ann, I know exactly how you feel. I can't be dealing with visitors for long either. The hardest part is telling her how you feel, just so she goes and you can feel less stressed. It won't do you any good to be made more stressful.

I know exactly how you feel about going out, or in the car. I'm exactly the same.

You all have my deepest understanding and sympathy.
 
Just a quick note about car rides. I have taken to wearing adult diapers - Depends are a little thinner and pretty discreet. At first it was hard to do (emotionally) but now I have come to really appreciate them. I have not pooped in them but just knowing I have it on seems to take the stress off of me. I know if I do have an issue I have some protection on. When I get close to where I am going if we stop somewhere I will take it off and toss it away in ladies room. I highly recommend them. The hard part is trying them for the first time. It was a little hard for me to wrap my head around but now its really fine. Nobody can even see them.
 
I rarely complain about the fatigue but it really hit me how noticeable it is when my mom stated she was tired and I agreed. My brother then chimed in with "you're always tired". Ugh.
 
spingirl said:
Just a quick note about car rides. I have taken to wearing adult diapers - Depends are a little thinner and pretty discreet. At first it was hard to do (emotionally) but now I have come to really appreciate them. I have not pooped in them but just knowing I have it on seems to take the stress off of me. I know if I do have an issue I have some protection on. When I get close to where I am going if we stop somewhere I will take it off and toss it away in ladies room. I highly recommend them. The hard part is trying them for the first time. It was a little hard for me to wrap my head around but now its really fine. Nobody can even see them.
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I second this. I have an ileostomy now, which I love, as it means I don't have this problem anymore, but when I did I used Molimeds (the brand the NHS uses - like most things, they're free on the NHS for people in the UK). I still use them for my bladder. They give you piece of mind and spare your clothes. Draw sheets work as protection for car seats, etc. too.

I still carry a change of clothes and everything I'd need to change my stoma bag while out in public in case my bag leaks, but that hasn't happened yet (though I don't go out in public nearly as much as I used to now as my other medical condition worsens). If I'm just out walking my dog and won't be out very long and nowhere very formal, I don't take anything with me now I've got the stoma.

To anyone who has continence problems, most important is often the stress and worry of what might happen. Although I know my bag could leak, I don't feel the same way about it as I did with incontinence, but some of that is a change in my thinking rather than just the physical change in the nature of the accident. Take clean clothes, wipes, etc. with you, try wearing an incontinence pad, and then try and put the fears to the back of your mind. If something does go wrong, deal with it when it happens, it won't be the end of the world. If you feel it may help, explaining the problem to whoever you'll be with from the start (if you're with friends or family) can make it much easier. If you're worrying about an accident, you at least won't be worrying about how you'll explain it to them or dealing with their surprise. They may also provide moral support, and practical help if you need someone to run and get you loo paper, clean underwear, or whatever.

And to bring this post back on topic to fatigue, worrying is exhausting! So I'd count incontinence pads as something that helps make going out not quite so overwhelmingly tiring.
 
Kit said:
Hamster said:
"But I can do about 25-30 hours of work a week, at home, lying down, on my computer, and stay off the phone for all but 10 minutes of the day. This is definitely not how I saw myself when I was younger, and fresh out of school with all the energy in the world. But its all I can handle at the moment."

So what is your profession Hamster and what ideas do you have for types of jobs that are easier when fatigued? I have been in the healthcare field for a long time as Physical Therapist Assistant. I don't have many ideas and not very motivated to look. Thanks for sharing
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Sorry, it takes me forever to respond. Programming and Web design/maintenance. But that's certainly not for everyone, it's a bit on the nerdy end for most; but I like it.

But I can't really get myself to do any marketing/sales/support for my services, so I have to 'buddy up' with a 'talker' to handle customer interaction. I've also had to drop pretty much every client that causes any amount of stress. My body just can't handle it.

I can't really think of a lot of other jobs like this. Energy and interaction seem to be a prerequisite for almost everything; and I am sure that includes healthcare.
 
If anyone suggests that its lazyness or that its a 'choice', why on earth would anyone choose to lay-down, all day, do nothing, go nowhere?

There is no upside at to this at all. And its not a consequence of anything we are doing or eating, that we can 'turn off'. Nobody in their right mind would purposefully be choosing this type of lifestyle, and we've all been to hell and back trying to combat it.
 
Yesterday I went out for coffee with my sister. The coffee shop was nice and we chatted for a long while. Then we visited some antique-type stores. The stores were all connected in a small strip mall. I had a good time at the coffee shop and the stores.

Before I even went on this coffee/shopping trip I had told my sister that I did not want to be gone for more than 5 hours because I get tired.

I arrived home at an appropriate time. I ate something and watched TV. One hour after I got home I became extremely tired. I could not keep my eyes open. I ended up turning off my TV and all the lights and shut my drapes. I slept for 4 hours in the middle of the afternoon ! I mean, I really slept like I do at night time. Except at night time I take a medication that makes me sleepy, that is a side effect of that one medication.

I am glad that my sister respected my limitations and I arrived home before my 5 hour limit. A while back I went to some Thrift Stores with my sister and Auntie and after 2 hours I was exhausted ( those stores were all attached in a little strip mall ).

I want to do other things, but I am pretty limited on the length of time I am gone because of the exhaustion I wxperience. With my sister or Auntie I can go to coffee shops, breakfast, lunch, dinner, to some Thrift Stores or Antique Stores. I did go to Costco with my sister one day to buy some things, but I had a short and detailed list of what I wanted to buy. I got the things on my list and then got out of there ! My sister likes to roam around the store and eat food samples. I just get what I want and then go home. : - )

Thanks for listening.
I am going somewhere 4 days a week now on a regular basis. I have to get up at 6:30am ( ugh). Then I get home by 3pm. I will see how the 4 day a week thing goes. If I get too tired I will cut down to 3 days a week.

: - )
 
@Ann. I feel you! I don't like to even plan 2 days in a row doing things (and that is 2-4 hours at a time). It will definitely catch up with me. My mom is very supportive, but I think she finally realized how severe the fatigue can get when I visited her. She saw first hand when I just shut down. She says she sometimes gets that way too, so she knows the feeling.
It is a daily struggle and I need to watch how I plan things.
 
Kit said:
@Ann. I feel you! I don't like to even plan 2 days in a row doing things (and that is 2-4 hours at a time). It will definitely catch up with me. My mom is very supportive, but I think she finally realized how severe the fatigue can get when I visited her. She saw first hand when I just shut down. She says she sometimes gets that way too, so she knows the feeling.
It is a daily struggle and I need to watch how I plan things.
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This is pretty much how I feel too. Though I can do more when it's things where I can plan my own schedule. So I walk my dog every day, and have family come to visit, etc. But I walk my dog at the time I have most energy. I'm a morning person, so I get up early, wait for my meds to kick in, then go out, maybe for fifteen minutes, maybe longer, but if I get tired (or any other symptom gets too much) I come home and rest. And it's ok having family round, because I still nap during the day when I need to, eat when I feel most able, etc.

But when I have to do things at a set time, it's exhausting and I get nervous whenever I have things scheduled coming up - hospital appointments, usually. Then they might coincide with the time I desperately need sleep, and it's awful.

It's been a few years since I last had what came close to a normal life - university, forcing myself to have a social life - and there's no way I could do half that now. But even back then, the evenings were the worst, I'd literally be crying with exhaustion because I just wanted to go to bed but made myself go for nights out instead.
 
I feel guilty sleeping through the day, but at least you people understand as so many others don't and make me feel guiltier than I do. It is a sorry state of affairs, and I think I'm a bit of a wasted life and that's my biggest regret. I would so love to go on holiday somewhere, but you all know how difficult that is. Utterly exhausting.
 
My family don't make me feel guilty - or even try to - because they know how miserable and irritable I am when I need sleep, so they know it's in their best interests to let me nap, I'm much easier to live with that way!
 
hamster139 said:
I kinda feel the same, but rarely express it... explaining it is pointless. And what they don't understand is what helps others battle fatigue will NOT help us.... believe me, we've all tried it.
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I am 54 years old and disabled. My sister is 64 years old and just retired. My sister has many things wrong with her health. We are both tired all of the time, so she somewhat understands me when I say I am "tired" ( which really means exhausted/fatigued ).

My sister can do : yard work, gardening, painting the inside of the house, home projects on the inside and the outside of her home, heavy duty cleaning, travel, site-see, walk, stand, SLEEP. She says that she is tired but if she is tired how can she do all of those things ! She just retired less than a year ago and she has been busy ever since.

The past few days I have been unusually "tired" and it really has me stumped. I am trying to figure it out. A lot of things can make a person "tired". I can be "tired" from my : Ulcerative Colitis, Hypothyroidism, Menopause, Major Depression.

I have been trying to participate in a program for people with mental health issues during the past month, which means being away from my apartment three to four days a week for several hours. I need to be away from my apartment to combat my isolation, but I also get very fatigued when I am away too long. I am trying to find a balance between resting at home and going to the program, in addition to doctors appointments and errands. I go to this facility to help me learn coping skills for my Major Depression and my Anxiety and I go there to socialize. The facilitators are great there and the clients are interesting and I learn a lot from sharing experiences with them.

I don't know why it is almost 1am and I am still awake. Ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh. :ybatty:
 
Spooky1 said:
........ I think I'm a bit of a wasted life and that's my biggest regret. I would so love to go on holiday somewhere, but you all know how difficult that is. Utterly exhausting.
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I'm felt the need to chime in as misery does love company. I've just reached this point in my life where after repeated episodes of extreme dehydration (getting the flu and losing 10lbs over night through my ileostomy), I've caused enough damage to my kidneys I now can add a new "disease" to my list of problems... "Kidney Disease". Due to my kidneys not functioning properly, I now experience added fatigue which when added to that related to my Crohn's Disease and depression, it has pushed me over the edge and not being able to work anymore. What's sad is that before my kidneys started to have major issues, I had enough energy to get my work day finished and that was about it. Now I have those 10 hours back in my day, but I am just as tired, if not more, but virtually all day now.

Lazying around the house all day definitely makes me feel completely useless and guilty as I see my partner come home tired from her work 5 days a week. At least she enjoys her work (RPN), but it still tires her out. That puts the pressure on me to get stuff done around the house, which I do honestly try to take care of, but there are days where I feel like I am running on 10% of a tank of gas, so even getting up and walking around is tiring.

I am just in the battle, i mean process of trying to get qualified for long-term disability, but to go back to the original statement I quoted, at least I worked until I was 43 years old, but without that in my life, if feel my future is nothing short of pathetic. It's hard to find purpose in your life, when you do nothing with it. When you lack energy, you lack the desire to participate in anything. I hate planning any future events as I fear the day the event arrives, I will just be too tired to participate and ruin it for my partner. I rather she plan outings with her mother, as then I know she will have fun.

I don't want to come across as suicidal here, it just that with being tired (not always sleepy but always resting), life can be pretty boring. There are only so many good movies/tv shows to watch and I feel I have almost watched all of them. I don't know how those of you who might be years ahead of me (ie. been on disability / not working for years ) can maintain your relationships with your respective partners. I figure, in time, she will eventually grow tired of "the guy that is making the big dent in the couch" and she'll find someone exciting to take her places and do things I can never do. Despite her not being a big thrill seeker/social butterfly, she isn't as much of a hermit as I.

I guess all we can do is deal with things one task at a time. My focus is on getting my disability approved now, so maybe with that out of the way and the stress associated with it, my "energy" can be next put in to finding purpose to my new way of life. :)
 
Spooky1 said:
I feel guilty sleeping through the day, but at least you people understand as so many others don't and make me feel guiltier than I do. It is a sorry state of affairs, and I think I'm a bit of a wasted life and that's my biggest regret. I would so love to go on holiday somewhere, but you all know how difficult that is. Utterly exhausting.
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My mom died in 2013. So for Christmas 2014 my sister had me join her and her family in Idaho for a week during Christmas. I enjoyed my week there. My sister paid for my airline ticket and my hotel. I spent time with my sister, brother-in-law, my niece and two great-nieces. BUT...... this entire trip was SO exhausting ! Packing, planning, cab to the airport, the plane ride, staying at a hotel, going places and doing things. I know my sister wanted me to have the best Christmas ever and I had a good visit there, but it was an exhausting week!!!!! I even had to stay in my hotel room all day one day because of colon issues. I guess this flying to Idaho every year is going to become a new family tradition for me since both of my parents are dead now, but can I survive this trip EVERYTHING year ????? : - 0.

PS: We went to a beautiful outside Christmas light exhibit while I was there. It was at night. I had to wear special snow boots, two jackets with hoods, two pairs of gloves and a scarf !!! Holy Cow. I am from Arizona. I cannot believe this is what people have to do just to go outside in the Wintertime ! I grew up in Minnesota as a kid, but moved to AZ when I was 12 years old.

Have a healthy week. :dusty:
 
The journey will get easier the more times you do it. You'll learn what to pack, the best cab firms, where the bathrooms are. Plan for some quiet time - e.g. an afternoon just staying in watching movies or something with your family.
 
I DID enjoy baking and eating home-made cookies ! Oh, and fudge too ! My tummy can tolerate all the sugary stuff, but not fruits/vegetables ( that just seems stupid, huh ? ).

Since I cannot walk very far, I get a wheelchair at the airport. They push me from the front door there, to the check-in window, through Security, to get a cup of coffee : - ) and right up to my departure gate. Then I give the wheelchair assistance person a small tip ($). When I first started to have to use the wheelchair at the airport I was embarrassed ( I am only 54 years old), but I honestly could never walk through an airport.

I had a lay-over in Minneapolis last year with my niece and sister. I tried walking around to all the shops with my little back-pack on my back. I was pretty confident at first, but then I finally had to say that I could not walk any farther and sat down......I won't try that again !

Oh, yeah, I ate food at the airport that I should not have eaten and had to RUN to the airport restroom less than an hour after I ate the food. Ahhhhhh.

Weather is great here today.
 
In the mornings my energy levels are so low its untrue. I'm 56 but I feel like an old old man @ times. Usually PM I just have to shut my eyes, fatigue just washes over me very quickly & I have to sleep. I can only put it down to not getting full nutrition from what I eat & not eating much fruit & veg + Humira.
Rgds
Grant
 
I've used wheelchairs many, many times - mostly in hospital, but that includes trips out of hospital to parks and cafes and shops when people came to visit me during my in-patient stays - and I'm a lot younger than 54.
 
@Spinbot. Yes, it's exactly like that. The great thing about this forum is that we do find people who also experience this. Not the ones that don't and therefore have no experience, therefore they just don't understand. It is rather hard. Not that people know that either.

You have my sympathy.
 
I did not know that aza caused fatigue - I thought I had researched all of the side effects as well! I struggle with fatigue - on top of crohns I have drug-induced lupus from humira and am having a flare at the moment. My partner isn't very understanding - his theory is that I am lazy and I "just have to push through it"! Not very helpful cause when I try to do that I am completely wiped out. Some of my friends don't understand this very well either and I feel so guilty turning down invitations or not visiting.
One of my bosses is quite ignorant about it all - she told me "we all get tired sometimes"! And I was so exhausted I wasn't thinking straight that I didn't realise until later how badly she insulted me.
So glad to have found this group - don't feel quite so alone.
And I love the spoons theory - I can totally relate to it but unless you are discussing with someone in a similar situation they don't seem to get it.
 
My sister and brother-in-law were visiting my city for 3 months recently because they just retired. She is tired all of the time too, probably from all her health issues. I was invited to SO many activities and trips and events while she was here, but I could not do them. So it was restaurants, coffee shops, the occassional thrift store and Scrabble for she and I. I felt bad about constantly turning down her invitations. I did not want her to think that I did not want to spend time with her ! She went home recently, but probably still doesn't understand that I cannot do all the things that she does.
 
Hi Spinbot,

Just wanted to send a note of support your way! I feel for you! I don't think most people understand not having energy to commit to something. Hang in there. With the age of the internet you can keep in contact with people without expending to much energy and being able to control it more. Balance. Find new ways to tell your partner how much you appreciate her and have quiet fun with her. Good Luck with the disability! This is a safe place for you you to express feelings and get support!
 
Welcome Pjmel! I am so sorry your partner doesn't understand. It is so hard to describe the fatigue we get. It isn't just tired, it is full out unable to function. We make our choices on the level of energy we have which is not predictable! I hope you find this forum a source of support and peace.
 
Just a question for people here with Crohn's with chronic extreme fatigue.

Does anyone here have a persistent low-grade fever that never goes away... or a constant feeling of being warm, even when you are not?

I feel like I am always battling two fronts, the fatigue and the feverish feeling. I understand the low-grade fever is common with Cronh's, but mine is kinda strange, a bit different than other crohn's sufferers. I feel very uncomfortable when it is hot, or when I am in the sun. I am now sleeping with cooling towels and I keep the AC on non-stop, and my abdominal area tends to overheat the most. I am just curious if I am the only one here with this sort of heat-intolerance.
 
I don't have fevers, but I have become very intolerant to heat, which I didn't used to be. The direct sun on my head does me in after about 10 minutes. (I have UC)
 
Like 1sickpuppy, I don't feel feverish, but I can't stand hot temperatures. It baffles my doctors because I'm extremely underweight and underweight people usually can't tolerate the cold because they have no bodyfat to keep them warm and if they're not eating enough their body won't waste energy keeping warm as there are other body functions which are more important.

I have a lot of medical issues besides Crohn's though and I don't think this symptom is Crohn's related in my case.

In general, people - including healthy people with no temperature regulation problems - are warmer at the core (torso, head) and cooler in the extremities (arms, hands, nose, feet, toes, fingers). I think again because of the need to keep the vital internal organs working is the priority, and the relatively poorer blood supply to the extremities makes body heat centre on the core. In people with temperature problems this distribution of heat may become more obvious - as in Raynauld's syndrome, frost bite, etc.

hamster - what makes you think your temperature problems are related to fatigue rather than Crohn's in general?
 
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I have Crohn's. When I get really fatigued/tired I get cold even to the point of chills right before bed. I do feel warm/flush feelings on and off especially in the summer. But I am not so warm I feel the need for extreme cooling. As for low grade fevers, I had them (99.2) almost every afternoon and evening when I had an abscess. The Dr had told me not to worry about a fever until it hit 101, but mine never did. Ended up with a drain for the abscess and surgery. So if this is a new symptom, you might want to see if you have any other symptoms that would warrant a low grade fever. I won't ignore a low grade one again.

I feel a lot of the cold and warm feeling is not being able to regulate my temperature very well.

i hope this helps
 
Constant fatigue...which leads to increased irritability. The fatigue is less when I'm on prednisone...but everything else about prednisone sucks. Its so hard to explain to family members and friends when you look normal otherwise...but are just so exhausted.
 
pjmel said:
I did not know that aza caused fatigue - I thought I had researched all of the side effects as well! I struggle with fatigue - on top of crohns I have drug-induced lupus from humira and am having a flare at the moment. My partner isn't very understanding - his theory is that I am lazy and I "just have to push through it"! Not very helpful cause when I try to do that I am completely wiped out. Some of my friends don't understand this very well either and I feel so guilty turning down invitations or not visiting.
One of my bosses is quite ignorant about it all - she told me "we all get tired sometimes"! And I was so exhausted I wasn't thinking straight that I didn't realise until later how badly she insulted me.
So glad to have found this group - don't feel quite so alone.
And I love the spoons theory - I can totally relate to it but unless you are discussing with someone in a similar situation they don't seem to get it.
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My sister has many health issues but she APPEARS to handle them way better than I do. I believe she has Sjogrens Syndrome, some form of Lupus, Cataracts, Rheumatoid Arthitis, terrible gums/teeth, hair loss. And she had a lumpectomy with radiation in 1987 for breast cancer. AND she is taking all kinds of strong medications that have side effects.

Recently in an e-mail she wrote to me she said ......."Having a pity party for myself is a waste of time". I really think she was aiming this statement toward me ( as if saying that me having a pity party for myself is a waste of my time.) I guess she and I handle our emotions and feelings in totally different ways. And I have a major Depressive Disorder, which has sucked all the joy out of my life.

My sister is a "you have to over that" kind of person.
And I am a super sensitive person that FEELS everything.
She RARELY talks or writes about her health issues, whereas my health issues overwhelm me everyday. I feel weak and tired and misunderstood and worthless. I mean, isn't she afraid about her catact surgery she will probably have next year ? That is surgery on her eyes. I would be terrified.

Before I started having symptoms of mental illness I felt exactly the way SHE did about people and things. Like "black or white " thinking. Like "snap out of it" thinking. Or "just get over it "thinking. And I probably looked down on some people who were not as fortunate as I was.

But then I suffered a breakdown, my dad died, my mom almost died of pneumonia, I lost my job due to "workforce reduction", ran out if money, had no income, had no health insurance, my sister financially supported me for 9 months, I was on food stamps, I waited 21 months for my SSD hearing, I was isolated and not on any psychiatric medications for over a year, my mom went into a nursing home, I ended up in the psychiatric floor of the hospital, my mom died. After all of my life experiences during the past ten years I now have so much empathy and sympathy and compassion for all kinds of people.

At one time in my life I considered some people to be THOSE people. The people who were on welfare and food stamps and who were poor. But as soon as it all started happening to me, I understood. I sat for 4 hours at DES for an appointment. I received food stamps for six months. And I collected Unemployment Benefits and then eventually SSD and Medicare. I never thought all this "would happen to me". I had a life, a great job at a bank for 24 years, an apartment, a car, my own money, vacations, traveleled and had confidence and independence at one time.

Now I have UC and major mental health issues. Now my life has turned a totally different direction and I am a different person. I lost my job in 2009 and I am still trying to figure out who I am NOW and what my purpose is. I want to belong.

Sorry I am ranting. I am sitting here at home taking my Vancomycin for my c-diff and doing nothing. I am infectious, so I am going to as few places as possible. It is going to be a long 2 weeks. Thanks again for listening.

I wish everyone a healthy and happy week. : - )
 
Can u add ne please iv got ibd but having tests done to see which one I'm so tired and cant explains it in pain in on morphine for pain but I'm just exhausted have three kids and husband I spend most of my time in bed on sick since Feb
 
I just wanted to add that having an Inflammatory Bowel Disease automatically sets us up for mood disorders. 95% of the seratonin (brain chemical involved in regulating positive mood and energy level) in the body at any one time is found in the bowels; it's made there! Doesn't it make sense that if our bowels are damaged, we won't be able to make or transmit appropriate amounts of neutrotransmitters?

(See this study, which showed that inflammation in the intestine inhibits neurotransmitter production even in the non-inflammed portions of the digestive tract).

Any chronic disease is tough to deal with emotionally and psychologically, but when it attacks our physical ability to manage our emotions and balance our brain chemistry, it's especially insidious.

This is a hard week for me energy-wise. I felt reasonable last week and was able to feel that I accomplished some things over the weekend, and this week it all sort of fell apart. I have my plan for dealing with these days (my green light, yellow light, red light plan mentioned in a previous post!), but it feels LAME to have to ration myself so carefully. I hate resting so much when a lot of times after resting a lot, I still feel just as fatigued. I fight the idea that I'm lazy and that I'm a disappointment because I'm not living up to my potential. It's impossible to explain this sort of deep brain fatigue even to friends who have other health concerns. It always feels like I'm making excuses for just being a silly and self-involved person. And people get tired of hearing that I'm discouraged and feeling worthless.

I feel as if I should just push through it, but when I do, I fall apart and I'm no use to anyone for days. So I have to admit that when I choose to rest before I reach the red alert moment, I'm less likely to reach that falling-apart stage and I am able to be a better wife and friend and person.

I am working to balance my desire to constantly fight this illness while at the same time choosing to be serene and at peace in the middle of it. I'm not good at it!

Be KIND to yourself today. I am trying, too!

xo
 
am working to balance my desire to constantly fight this illness while at the same time choosing to be serene and at peace in the middle of it. I'm not good at it!
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Love this, it's a great explanation of the struggle! And it IS hard.

Unxmas, that's interesting - I'm normally always cold, too. I guess I can't do temperature extremes very well. That said, it's 93 degrees outside today and I'm laying on the couch wearing sweats and wrapped in a blanket. It makes no sense even to me LOL.
 
ChristieJP said:
I just wanted to add that having an Inflammatory Bowel Disease automatically sets us up for mood disorders. 95% of the seratonin (brain chemical involved in regulating positive mood and energy level) in the body at any one time is found in the bowels; it's made there! Doesn't it make sense that if our bowels are damaged, we won't be able to make or transmit appropriate amounts of neutrotransmitters?

(See this study, which showed that inflammation in the intestine inhibits neurotransmitter production even in the non-inflammed portions of the digestive tract).

Any chronic disease is tough to deal with emotionally and psychologically, but when it attacks our physical ability to manage our emotions and balance our brain chemistry, it's especially insidious.

This is a hard week for me energy-wise. I felt reasonable last week and was able to feel that I accomplished some things over the weekend, and this week it all sort of fell apart. I have my plan for dealing with these days (my green light, yellow light, red light plan mentioned in a previous post!), but it feels LAME to have to ration myself so carefully. I hate resting so much when a lot of times after resting a lot, I still feel just as fatigued. I fight the idea that I'm lazy and that I'm a disappointment because I'm not living up to my potential. It's impossible to explain this sort of deep brain fatigue even to friends who have other health concerns. It always feels like I'm making excuses for just being a silly and self-involved person. And people get tired of hearing that I'm discouraged and feeling worthless.

I feel as if I should just push through it, but when I do, I fall apart and I'm no use to anyone for days. So I have to admit that when I choose to rest before I reach the red alert moment, I'm less likely to reach that falling-apart stage and I am able to be a better wife and friend and person.

I am working to balance my desire to constantly fight this illness while at the same time choosing to be serene and at peace in the middle of it. I'm not good at it!

Be KIND to yourself today. I am trying, too!

xo
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Thank you for sharing. What you said made me feel less alone. For me it truly is about balance.....physically, emotionally and mentally. I am learning that it is not selfish to take care of myself, no matter what other people think. People actually respect me more when I stand up for myself. Having my own set of physical and emotion boundaries has really empowered me.

"My Life, My Rules"
 
1sickpuppy said:
I don't have fevers, but I have become very intolerant to heat, which I didn't used to be. The direct sun on my head does me in after about 10 minutes. (I have UC)
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WOW, it sure helps to have this forum. I can't thank whoever started it enough. I was starting to think I had something else. I cannot tolerate sunlight at all. The beach has become impossible for me now, this only happened within the last few years, and I was puzzled, kinda scared, because this didnt fall under classic crohns symptoms.
 
hamster139 said:
WOW, it sure helps to have this forum. I can't thank whoever started it enough. I was starting to think I had something else. I cannot tolerate sunlight at all. The beach has become impossible for me now, this only happened within the last few years, and I was puzzled, kinda scared, because this didnt fall under classic crohns symptoms.
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Is heat or sunlight intolerance a part of Ulcerative Colitis ?
I no longer can be in direct sunlight, even for a few minutes.
When I am in direct sunlight I feel like there is a torch on my skin.
Even when I am driving my vehicle with the window open and the
sun hits my neck and arm it really feels super hot.
So, here I am in Arizona and I cannot tolerate the sun whatsoever.
I will now have to buy an umbrella and wear long sleeve shirts and a
big funny hat ?:eek2:
 
UnXmas said:
Like 1sickpuppy, I don't feel feverish, but I can't stand hot temperatures. It baffles my doctors because I'm extremely underweight and underweight people usually can't tolerate the cold because they have no bodyfat to keep them warm and if they're not eating enough their body won't waste energy keeping warm as there are other body functions which are more important.

I have a lot of medical issues besides Crohn's though and I don't think this symptom is Crohn's related in my case.

In general, people - including healthy people with no temperature regulation problems - are warmer at the core (torso, head/face) and cooler in the extremities (arms, hands, nose, feet, toes, fingers). I think again because of the need to keep the vital internal organs working is the priority, and the relatively poorer blood supply to the extremities makes body heat centre on the core. In people with temperature problems this distribution of heat may become more obvious - as in Raynauld's syndrome, frost bite, etc.

hamster - what makes you think your temperature problems are related to fatigue rather than Crohn's in general?
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Just a hunch. I never saw heat intolerance or sun intolerance as a symptom of Crohns, and like you, I am very underweight, and also like you, my GI looked confused when I mentioned it, specifically the sun issue, and he was supposed to specialize in Crohn's. My extremities are very cold as well ( but I have Reynalds Syndrome, which probably isnt related to my Crohn's ) I have searched forum after forum for this, and no Cronh sufferers have mentioned it, other than the low-grade fever. I see it mentioned on Lupus and MS forums, but that was it. but now I see two of you, and you are both in this forum.

Also, as my fatigue got worse, my other symptoms did not... (well, I got a bit more constipation), but the heat issue has been a perfect coloration.
 
Ann Morgan said:
Is heat or sunlight intolerance a part of Ulcerative Colitis ?
I no longer can be in direct sunlight, even for a few minutes.
When I am in direct sunlight I feel like there is a torch on my skin.
Even when I am driving my vehicle with the window open and the
sun hits my neck and arm it really feels super hot.
So, here I am in Arizona and I cannot tolerate the sun whatsoever.
I will now have to buy an umbrella and wear long sleeve shirts and a
big funny hat ?:eek2:
Click to expand...

No, I don't think it is. At least I couldnt find it as a symptom on the internet. Again, I just have this hunch its related to extreme fatigue in some strange, maybe indirect way.

I know how you feel. I have basically become a vampire, and the second I go outside, all I can think about is... where is the shade? Yikes, Arizona.
 
edentenley said:
Constant fatigue...which leads to increased irritability. The fatigue is less when I'm on prednisone...but everything else about prednisone sucks. Its so hard to explain to family members and friends when you look normal otherwise...but are just so exhausted.
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Yes, the fatigue definitely causes irritability. I really hate that. It has transformed me into an awful person at times. :(

However, I have absolutely loved prednisone. (and so does my wife) It just removes every symptom, all at once. Whenever my doctor suggested a prednisone regimine, my family would plan a trip, because they knew I would become a normal person, and my fatigue would dissapear.

however, the last two times Ive taken it, it stopped working, for no apparent reason. It was depressing. My GI was thinking I had built up a tolerance :(

But after an 18 month prednisone vacation, my doc suggested it again. I started a regimen today, 40 mg, and it is somehow working again. Which explains why I am able to even type this much at this time of day. We went out to dinner today, I didnt slouch or support my head with my palm even once. I had perfect bowel movements. I just cant believe that this is the same drug I took 18 months ago that had absolutely no effect on me. Very puzzling. I hope it continues... I would certainly like to do some traveling.
 
hamster139 said:
Just a hunch. I never saw heat intolerance or sun intolerance as a symptom of Crohns, and like you, I am very underweight, and also like you, my GI looked confused when I mentioned it, specifically the sun issue, and he was supposed to specialize in Crohn's. My extremities are very cold as well ( but I have Reynalds Syndrome, which probably isnt related to my Crohn's ) I have searched forum after forum for this, and no Cronh sufferers have mentioned it, other than the low-grade fever. I see it mentioned on Lupus and MS forums, but that was it. but now I see two of you, and you are both in this forum.

Also, as my fatigue got worse, my other symptoms did not... (well, I got a bit more constipation), but the heat issue has been a perfect coloration.
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Temperature regulation problems are usually due to autonomic dysfunction. If not enough sweat is produced and blood vessels don't dilate properly, the body cannot cool down adequately. (Think about how, when someone's very hot they sweat and their face goes red - the sweat cools them down as it evaporates from the skin and the red face is due to blood vesels dilating so blood gets to the surface of the skin.) I think that's what happens in MS and other illnesses. But I can't see that it should happen in Crohn's. Does anyone know if Crohn's involves autonomic dysfunction??

Disclaimer - I've read about this a lot and doctors have told me about it, but I may well have got some things wrong, because the science behind it is complicated!
 
hamster139 said:
Just a hunch. I never saw heat intolerance or sun intolerance as a symptom of Crohns, and like you, I am very underweight, and also like you, my GI looked confused when I mentioned it, specifically the sun issue, and he was supposed to specialize in Crohn's. My extremities are very cold as well ( but I have Raynaud's Syndrome, which probably isn't related to my Crohn's ) I have searched forum after forum for this, and no Crohn's sufferers have mentioned it, other than the low-grade fever. I see it mentioned on Lupus and MS forums, but that was it. but now I see two of you, and you are both in this forum.
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This *IS* a really interesting topic . . . when my Crohn's symptoms are worse, I run unusually cold AND I have Raynaud's Syndrome AND I don't tolerate heat well! Even before I was diagnosed or really sick, I stayed out of the sun as much as possible. There is at least one study that shows more flares in IBD in hot weather conditions, so I know we're not crazy! I live in Arizona, too - ha! It's was funny last week when it was pretty unseasonably warm here in Arizona (low 90s) that I wasn't whining about being hot; I'm in a bit of a flare so I'm cold! Perhaps my illness did some good by saving us money because we left the a/c off. :) I think I would run cold all the time, but I had my ovaries removed due to endometriosis a while back, so I don't have the same amount of estrogen I used to (less estrogen = more body heat). I'm pretty sure that helps me not be as cold as I could be. Aren't we all complex?!

Whether because we're in the bathroom, on the couch, or intolerant to heat/sunlight, I bet people with IBD are among the least likely to get sun-exposure related skin cancers - ha!
 
ChristieJP said:
This *IS* a really interesting topic . . . when my Crohn's symptoms are worse, I run unusually cold AND I have Raynaud's Syndrome AND I don't tolerate heat well! Even before I was diagnosed or really sick, I stayed out of the sun as much as possible. There is at least one study that shows more flares in IBD in hot weather conditions, so I know we're not crazy! I live in Arizona, too - ha! It's was funny last week when it was pretty unseasonably warm here in Arizona (low 90s) that I wasn't whining about being hot; I'm in a bit of a flare so I'm cold! Perhaps my illness did some good by saving us money because we left the a/c off. :) I think I would run cold all the time, but I had my ovaries removed due to endometriosis a while back, so I don't have the same amount of estrogen I used to (less estrogen = more body heat). I'm pretty sure that helps me not be as cold as I could be. Aren't we all complex?!

Whether because we're in the bathroom, on the couch, or intolerant to heat/sunlight, I bet people with IBD are among the least likely to get sun-exposure related skin cancers - ha!
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For me, the flares timing doesnt seem to be related to my sun/heat issue. It just kinda popped outa nowhere, and stuck. And here I am, a vampire, when I used to love the sun. I am sure my dermatologist is proud of me.

I really don't have a true persistent fever either. It is a strange 'perceived' feeling of heat, but it doesnt show up on the thermometer, and the sun magnifies it 10x.

Its a real puzzle for me. But I feel better knowing I am not the only one. And yes, balancing reynalds and this, and sleep issues is pretty complex. I have to very strategically keep my core areas cool, and my extremities warm, and stay away from the sun.... and also... I need to expose myself to artificial light in the morning while I have cooling pads everywhere. A very strange routine.
 
I also have Reynauds far worse since the menopause, and sometimes if I step into the garden on a hot day, my skin gets very itchy bumps immediately. But I love a sunny day and I feel so much better when it's sunny. I'm so pleased I'm not the only one that has these issues. I thought it was just me.
 
Regarding issues with sunlight etc

My logical head would think that given there are specific areas of the gut related to specific vitamins and given that we can have damage anywhere in the gut...
It's not a huge stretch of mind to think that if the gut flora is out of sync and adversely affected (and/or the gut wall is damaged) in the area of the gut that when acting normally deals with vitamin D absorption/generation (maybe a better way i could put that is promoting calcium absorption), then

It seems plausible that suffers could have issues with being subjected to certain vitamins at the intake level.

Could almost argue it is working in the same way as the milk problem in many of us - eg arent lactose intolerant, but we cannot have milk unless lactofree while we currently have our illness.

I dunno call me a tin-foil hat wearer or a quack for thinking this way but seeing cause and effect and then learning a bit about the functions of the gut and its flora and where specifically certain vitamins are absorped it stacks up to me.
 
I've just finished a course of vitamin D supplements my GP prescribed after a blood test showed they were very, very low (I get sunburn incredibly easily so I always wear suncream when out in Summer, and even in Winter I wear a moisturiser with spf, plus the digestion issues). But my response to temperature hasn't altered one bit. And I've been through this process of very low vitamin D up to norrmal levels after a course of supplements twice before with no effects on my temperature problems then either. I wish getting rid of my heat intolerance was as easy as taking Vitamin D!
 
I have an ileostomy and it didn't make my stoma output any more watery than usual and it didn't cause high-volume output. These are the ileostomy eqivalent of diarhhoea, so, no it didn't cause it. Vitamin D shouldn't cause side effects as long as you don't take too much.
 
Over 95 percent of the bodies serotonin is found in the gastrointestinal tract. I just found out about this the other day.

I have so much to learn about the gut and how it effects my health. It's "not all in my head" ! There really is scientific proof for so many unanswered questions that I have.

Well, have to take my Vancomycin now. I am really irritated that I have this c-diff.
 
During the 1970's to now, I have found the best way for me was extreme exercise (extreme meaning a couple hours of basketball and volleyball). I get an energy boost from this it has always appeared that helped even through extreme abdominal pain. Humira is now giving me some challenges with nodding off at times just about anywhere except on the motorcycle, my doctor prescribed prednisone (my most hated drug) 40mg for a couple of days for each dose of Humira. First loading doses had me laying in bed wondering where my life went (and they were work days) I have not missed any time since adding prednisone to the Humira routine. It is hard to say : stay active at something when a. you are in pain, b. you are falling asleep or c. you are so lethargic that you can't move but if you do not, you may be doomed to taking more pills to combat fatigue. I have over 40 years of Crohn's BS - fight it!
 
I just wanted to add something positive (I tend to log on when I'm most discouraged, but right now I'm feeling upbeat!). Last night my sweet husband was talking to his Dad on the phone and I heard him say, "Christie has been working really hard to pay attention to her body's signals and rest when she needs to and her mood has been really stable and positive even though she doesn't feel that great." He sounded really proud and just to have him acknowledge the effort I put into having energy for the most important things and some left for him at the end of the day was an amazing encouragement for me.
 
I think you must have a much more mild fatigue, Roxymusic. Extreme exercise isn't possible with extreme fatigue.
 
Roxymusic thanks for the input, but I have to agree with Unxmas. The fatigue we get can be from taking a shower and our body and brain shuts down. I literally have had to shorten my shower routine at times due to not being able to think or function. It is a balance for us to know when we can push a little and when we can't.
 
My occupational therapist just put a grab rail into my shower. It's because of my balance problems mainly, but I'm sure it will also be useful for those times when my energy runs out. Or for lightheaded fainting episodes.
 
Mine got me a bench for over my bath for a safe shower. It is really great as there is far less chance of me coming to harm. I know exactly what you mean by lightheaded fainting episodes. I love that only people on here know exactly what I mean. The understanding from fellow Crohnies and colitis folk is what we all need.
 
Anyone become so exhausted they can't stand or even move much? Right now I'm unable to stand on my own for more than a minute.
 
I felt like that after one of my surgeries, Jeff. I'd been extremely underweight before the surgery, then afterwards I developed ileus (paralysis of the digestive tract) which meant I couldn't eat so I had zero energy reserves and zero energy coming in. Even once I was home, it literally made my arm muscles (or lack of muscles) ache to lift clothes over my head to get dressed and I'd have to sit down and rest between the bathroom and the living room. It improved once I was able to get more food into me though.
 
I am sooo glad we have a forum to talk about this with people who understand! As has been said before it is hard to describe to someone who hasn't had any experience with it. May everyone have energy today to enjoy something wonderful in their day!
 
I'm really happy to talk about this because I know most crohnies deal with fatigue at some point usually because of malnutrition or dehydration but I think I'm dealing with extreme debilitating fatigue unrelated to my crohns. I was diagnosed with fibromyalgia/cfs. I wonder if others here may have as a result of crohns had another illness like that activate. They think that chronic fatigue syndrome is an immune disorder as well.
 
I've recently be diagnosed with crohns. I've got it pretty mild compared to others. The fatigue is getting to me. Aching thighs is constant. I swear I'm worse of now I'm on meds! I originally went to the doctor with irregular toileting but was entering running and cycling events, now I'm on meds I've done nothing since November.
 
Does anyone get prescribed any meds to help them with fatigue? I know this sounds extreme but I had a lady that was suffering from cancer and her doctor gave her a med for fatigue and I can't remember what it is but I am trying to find something that will work.
 
Spooky1 said:
Mine got me a bench for over my bath for a safe shower. It is really great as there is far less chance of me coming to harm. I know exactly what you mean by lightheaded fainting episodes. I love that only people on here know exactly what I mean. The understanding from fellow Crohnies and colitis folk is what we all need.
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I was visiting my sister in another state over the Christmas Holiday last year. She put me up in a nice hotel. I was actually in a handicapped room. The shower was made for handicapped folks. The tile in the shower and the tile in the bathroom were the same and at the same level ( no walking over the side of a tub ). The shower floor was flat. It had bars to hold on to, if needed. It had a bench. And it had a hand-held shower head. I was in heaven ! I never thought a shower could be so nice. I had my choice of standing up in the shower and using the hand-held shower head, or I could sit down on the bench if I wished ( I sat on a towel on the bench ). How weird that one of the best things on my vacation was a shower !:dusty:
 
I know that I could help myself feel better if I lost weight, ate properly and exercised. But I don't do it. Why don't I want to help myself feel better.

When I was in my 30's I lost a lot of weight, I walked every morning before work, I rode my bike every weekend and I was a vegetarian. I felt so good. I cannot remember how long I was able to maintain my good health, but I was so motivated and the motivation came from within myself, not from other people. It was a good feeling to accomplish what I did. I was so much stronger then, physically and mentally. I had my own apartment, a good job, a car and was very independent and confident.

But then........1992 Anal Fistulectomy, 1995 Laparascopic Cholestectomy, 2002 Rectal Abscess Surgery, 2007 Partial Nephrectomy, and 2009 another Rectal Abscess Surgery.

And.....1996 I started to feel tired and old, 1997 I started to have diarrhea all of the time, 2001 Optic Neuritis, 2006 Migraines, 2007 Mental Health Breakdown.

Eventually there was more......Osteoporosis in my Lumbar Spine, Osteopenia in my neck, Arthritis in my Hips, Acid Reflux, Iron Deficient Anemia, High Blood Pressure, Ulcerative Colitis, Hypothyroidism, nodules growing on my thyroid, Major Depressive Disorder, Anxiety, B12 Deficiency and I have had problems with obesity for over 30 years.

I am currently taking 11 medications, two vitamins and one probiotic every day. I am only 54 years old. I just got done taking Vancomycin for C-diff.

Why me ?
 
sehart717 said:
Does anyone get prescribed any meds to help them with fatigue? I know this sounds extreme but I had a lady that was suffering from cancer and her doctor gave her a med for fatigue and I can't remember what it is but I am trying to find something that will work.
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I've had modafinal, but the side effects weren't worth it and I quickly developed tolerance to it.

Codeine also gives me energry, even though it's supposed to be a sedative.
 
codeine gives me some energy for half an hour then I go into snooze mode, then I get moody when its trailing off. So addictive too. I hate my moods with them.
 
Codeine does make me feel calmer and more relaxed mentally, so maybe that's due to its sedative properties, but physically it makes it far easier to get up and do things. But maybe it's just because it stops the pain of all my body aches that makes me feel like I've more energy? But it works too well for me, now I'm addicted so I feel awful without it.
 
I'm on cocodamol and have trouble sleeping sometimes but have really bad fatigue been I bed all day and slept all day in pain I have ibd but still waiting for colonscopy to see which one cant wait to be put on meds and hopefully start to feel better all joints hurt and loud gurgling noises today
 
UnXmas said:
Codeine does make me feel calmer and more relaxed mentally, so maybe that's due to its sedative properties, but physically it makes it far easier to get up and do things. But maybe it's just because it stops the pain of all my body aches that makes me feel like I've more energy? But it works too well for me, now I'm addicted so I feel awful without it.
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This does sound like you are having some physical and mental addiction, more mental than physical. I used to feel that in order to do what i needed to do for the day I had to take a pain pill. I was so scared to be in pain and be unable to do things that I started to psych myself out and make myself believe I had to have it to function and it was helping me, but if i ran out of it it was impossible for me to get out of bed even. very scary stuff, talk to your doctor about it please. I don't want you to have the same issue i did. I am on methadone now, have been for two years as of 5/5/15 and it started with codeine.
 
My doctors are well aware of my addiction. It's just not a priority, given my other health problems. I think it's equally physical and mental. I do stop taking it sometimes, so I know I can, but I don't want to stop taking it altogether.
 
I went to an amazing one-day training on chronic inflammation and one of the many helpful tidbits I took away was that gentle exercise (walking, yoga, stretching, tai chi, slow swimming, etc.) is ANTI-inflammatory, but hard exercise (training for a marathon, rock climbing) is PRO-inflammatory (here's a link that explains some of the studies in layman's terms). Hard exercise does give adrenaline and some pain relieving hormones during and immediately afterward, which feel very good and can add energy, but at the same time, it adds to the inflammatory burden our bodies carry.

My lifestyle has become one of as much anti-inflammatory activities, foods, etc. as possible. I no longer run, I walk. I don't usually climb the highest peak in the park anymore, I walk along the trail at the base of the mountain (when I have enough energy for those things!) Even the sort of music we listen to can affect inflammation, amazingly!
 
I don't think hard exercise is an option for most people in this support group.

Maybe there should be a separate group for mild fatigue sufferers?
 
Re: Codeine. I took a prescription once of Tylenol with codeine and it did nothing for me. An orthopedic doctor at the time prescribed it to me for arthritic shoulder pain. After that I got a prescription for hydrocodone ( which I LOVE) but he only gave me a three month supply and no more than that. I call hydrocodone my "happy pills". I am on no painkillers at this time except occassional acetaminphen, which does very little to help me.
Thanks for listening. : - ) : - )
 
UnXmas said:
My doctors are well aware of my addiction. It's just not a priority, given my other health problems. I think it's equally physical and mental. I do stop taking it sometimes, so I know I can, but I don't want to stop taking it altogether.
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I am glad that you let your doctors know. It is very hard to live with this disease and not take pain medicine. Doctors are usually very uncaring in this area. I just had one lecture me about how bad methadone is for crohn's and got my family getting on to me about it. What else do they want me to do? Be miserable all the time and really start hating life? I am sending support and healing thoughts your way!:hang:
 
Yep, I was a dihydrocodeine addict. I could get through a months supply in 8 days though. I realised how bad it had got and decided I had to get off them totally. Even codeine phosphate gives me mood swings. Mind, heavy doses helped the diarrhoea a great deal and I felt little pain. Not like now I must say. Think my life is of a very low quality these days. Sad really, but at least we can all identify with the chronic fatigue and lack of real activity in this thread.
 
I'm the same, Spooky. But the more codeine I take, the more my doctor prescribes for me, even though it's well over the maximum recommended amounts. I get a month's prescription every two weeks at the moment. But I have no bad side effects from them, and as you say, they help my stomach problems, so it feels wrong to see codeine as bad for me.

Though coincidently my doctor just left me a message saying we need to move to a different painkiller. We've been trying other painkillers, but all non-addictive ones, and also Tramadol but they didn't help, so now we will try stronger opiates. I was thinking of asking about Diazepam as I was given that as a painkiller while in hospital. I know that's addictive also.

I'm also getting the results of my x-rays soon to see if my spine is fractured and if that's one cause of my pain.
 
Hello, Okay I know I've vented before on fatigue in the past--more so when I was pregnant...hormones make you overally emotional. Now that I am not I am having some energy back. I was diagnosed with Crohns when I was 17.5 years old and I am now 30 years old. I have had two healthy children naturally and I currently have been in remission for many years. When I found out I had three ulcerations in my large colon and was bleeding internally I went on Pentasa. The medicine made me even sicker than the disease. I don't take medication currently. What works for me is I eat healthy, I avoid peanuts/PB, corn, coffee, alcohol, & soda (except rarely on special occasions-Holidays). I take probiotics, pure olive oil (internal), pure grape seed oil/pure vitamin E oil (skin-external), probiotic yogurt/kefir, garlic (internal in combo with olive oil), and exercise at least 40 mins twice a week (speed walking on a treadmill). I have days where I am exhausted and others I have energy. The days I have energy I push myself to do as much as I can on those days. I have two children so I mentally push my body on some days to get up and do what a parent must do. It's hard, but I sometimes win the battle by forcing myself to do what I didn't think my body could do. I know in a flare up that might be a lot less possible, but in remission it is more possible. Stress is a huge factor and if you can let things roll off your back you will get a lot less sick-stress lowers the immune system causing more flare ups. It's not how much stress you have it's about your out look on that stress is. I guess as I get older I see it's not worth worrying about until it's time to act on it. Honestly, I find most stress is caused by others criticism who do not understand the fatigue with crohns. If you can also handle and accept the fact that others most likely will never understand it you will be better off. Also, if you are having yeast issues due to your crohn's inbox me I can help. I found a way to conquer mine. (Most yeast through out the body is due to antibiotics that a Dr. may have given to you not realizing it can't be given for crohns disease or due to your lowered immune system and the consumption of bad yeast.)
 
UnXmas: Wow. Give me the name of your doctor ! : - ) : - 0. None of my doctors are too keen on prescribing me anything for pain. No prednisone. No hydrocodone. My Psychiatrist is only prescribing me the lowest dose of Clonazepam, for anxiety, each day. I sure would like more Clonazepam because it helps lessen my anxiety....and makes me feel good. The only thing my Rheumatologist wants to do for my neck is (1) Physical Therapy, which was only temporary relief. (2) Now he wants to send me to a Pain Management Specialist for Botox shots for the left side of my neck. I know Botox has been around for a long time now, but I need time to think about it being injected into my body. And I would first want to make sure that the Botox would not have a drug in reaction with my other medications.
 
Ann - my doctor is wonderful! They have to be careful with addictive meds though. My doctor knows me - and my family - very very well. (Where I live is very rural - the local doctors know you not just as a patient. The chemists too. My chemist has even given me meds before I got the prescription from the doctor before now.)

I thought physio was wonderful too though. What is your rheumatologist hoping physiotherapy would do for you? It can really help. I was helped so much when recovering from paralysis, and I'm being referred again now to help with my pain and back/leg problems.

I've had botox in my bowel - had it done years ago. It didn't help but it hasn't done me any harm. You should try it.
 
Physical Therapy on my neck was $45.00 per visit and I went at least 12 times. In order to keep my neck feeling better I would probably have to have the PT on an ongoing basis. I must admit that having a young, handsome guy massage my neck was pretty nice ! Right now the pain in my neck is less than it was a few weeks ago. I carry most of my stress in my neck, head , jaw. My muscles are SO tight. I have had full body massages in the past and every massage therapist mentions my neck ! I have a huge "knot" near the bottom of the left side of my neck. I have very little mobility in my neck and they can't do anything, really, to make my neck move, but they can offer PT or Botox for pain. My shoulders have arthritis and pain too, so the shoulders and neck are connected and what a mess. Thanks for listening. Going to eat lunch now....oh, goody.....it's rice ( because my colon was NOT happy yesterday and I had 6 diarrhea BM's). : - (
 
nogutsnoglory said:
I'm really happy to talk about this because I know most crohnies deal with fatigue at some point usually because of malnutrition or dehydration but I think I'm dealing with extreme debilitating fatigue unrelated to my crohns. I was diagnosed with fibromyalgia/cfs. I wonder if others here may have as a result of crohns had another illness like that activate. They think that chronic fatigue syndrome is an immune disorder as well.
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NGNG I haven't been diagnosed with CFS, but I think my fatigue is not related directly to my crohn's. My symptoms see to be under control, but I still struggle with fatigue. How did they diagnose the CFS?
 
New member here so please bear with me. (Not that computer savvy at 50 years young, LOL...))) Diagnosed with Crohn's April, 2008 but the fatigue is killing me. All my blood work, B-12 is normal or on the low end of normal but have absolutely no energy at all.
 
Welcome, and please know that this site is brilliant. It's where we all come for understanding of what others are going through. The people here do experience the same as you, and are helpful even if your family/friends have no real knowledge of what you're going through. The fatigue is a major problem for many of us. We are the sort that would give anything just to live a normal, boring life, rather than feeling so ill and coping with very little in the way of everyday life.
 

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