Extreme Fatigue Support Group

Crohn's Disease Forum

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ChristieJP said:
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.
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That's really interesting. My son plays tennis on the JV team for his high school and he really, really struggled this year with fatigue - like couldn't even walk up the stairs kind of fatigue. As a mom, it's incredibly hard to watch this young body not be able to do something as basic as that. Thanks for sharing the article.
 
I do a little bit at weekend and.im totally wiped out couldn't get to sleep last night till 4am and iv slept on and off all day stomach bloated pain gurgling joint pain x
 
I went for a walk the other day, pushing my kids in a double stroller. I used to be able to do this with no problem... Well, this time I made it halfway through my normal route and was worried I wouldn't be able to make it back to my car! :( I need to lose some extra weight (not a lot, just 10 pounds), but I have NO energy to do anything.

I hate it!
 
edentenley said:
I went for a walk the other day, pushing my kids in a double stroller. I used to be able to do this with no problem... Well, this time I made it halfway through my normal route and was worried I wouldn't be able to make it back to my car! :( I need to lose some extra weight (not a lot, just 10 pounds), but I have NO energy to do anything.

I hate it!
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Have the kids push you next time. ;)

Don't worry about 10lbs, that's not that much, and diet will affect your weight more than exercise anyway. Sometimes exercise gives an energy boost but sometimes you just need rest.
 
AirCooledChillerMech said:
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.
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Welcome! This forum is wonderful to express our frustration with fatigue and this illness. Feel free to ask questions and look for support. We understand!!
 
edentenley said:
I went for a walk the other day, pushing my kids in a double stroller. I used to be able to do this with no problem... Well, this time I made it halfway through my normal route and was worried I wouldn't be able to make it back to my car! :( I need to lose some extra weight (not a lot, just 10 pounds), but I have NO energy to do anything.

I hate it!
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I am with you! And no energy means no motivation and it just cycles. Sigh Hopefully you can take shorter walks and know when you just can't walk that day. I could use to lose a few pounds too, but no energy or motivation to get moving! I am lucky to get the things done around the house I need too and take care of myself!
 
I apologize if this has been addressed in the previous pages, But I havent had the time to read the whole thread yet.

Has anyone found anything that helps? Specifically supplements, herbs, vitamins, and "natural" treatments? Has anyone had any luck with Prescription medications?

I have been fatigued for the past 2+ years, and I have only recently been suspected of crohns and waiting for a diagnosis. I eat healthy, I quit smoking, I cut out caffiene except for green tea, and I exercise when I can(biking).

I would love to hear from someone who has found something that has helped them. Thank you, I really appreciate being part of this community. All the best to everyone!
 
mackraslo said:
I apologize if this has been addressed in the previous pages, But I havent had the time to read the whole thread yet.

Has anyone found anything that helps? Specifically supplements, herbs, vitamins, and "natural" treatments? Has anyone had any luck with Prescription medications?

I have been fatigued for the past 2+ years, and I have only recently been suspected of crohns and waiting for a diagnosis. I eat healthy, I quit smoking, I cut out caffiene except for green tea, and I exercise when I can(biking).

I would love to hear from someone who has found something that has helped them. Thank you, I really appreciate being part of this community. All the best to everyone!
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I've never found any natural treatments that help. Prescription codeine helps me a lot, but it is addictive. I've also tried Modafinil, which didn't help me, but does help some people.

Have you been tested for anaemia and other deficiencies? If you're underweight or losing weight, that can increase fatigue a lot too. So getting the right nutrition can help if that's an issue for you.

I know it's obvious, but good quality sleep is crucial. I can't function without a lot of sleep.
 
@mackrasio I haven't found any real solutions except for trying to get enough rest/sleep (9-10 hrs a niight) so I can function when i need to. Light exercise can help manage, but doesn't get rid of the fatigue. (and by the way I am really bad about doing any. Walking, yoga and Tai Chi are all I try when I am motivated to) I really have to pace myself during the day with lots of rest breaks. That all being said I ended up leaving my job due to not being able to keep up even with a short day.

I wish I had more help for you, but I think everyone is individual in what helps them as well.
 
Hi kit don't u work now that's what I'm bothered about I'm on sick and have been since Feb iv been in bed all week no energy in worried iwill never be well enough to go bk to work it putting big strain on my marriage and family life still waiting for diagnoses I'm so glad I found this site don't feel so alone
 
mrspecker said:
Hi kit don't u work now that's what I'm bothered about I'm on sick and have been since Feb iv been in bed all week no energy in worried iwill never be well enough to go bk to work it putting big strain on my marriage and family life still waiting for diagnoses I'm so glad I found this site don't feel so alone
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It is so difficult making the decision not to work anymore, but I was achy all the time, fatigued, no social life and wasn't performing my job very well. May manger and friend told me she would let me know when I wasn't doing what I needed to be doing at work. She was going to help me find another type of job in the system, but I didn't have the energy or motivation to find one and keep working until I did. Fortunately my husband has a good job and his salary can support us for now and he is a HUGE support for me. I thought about disability, but all I have medically right now is me saying that I am fatigued and can't function sometimes.

Hang in there and explore options as able!
 
Have u tried claiming pip if u work or don't work its not the condition it how it affects ur daily living u should claim it there website that tell u about it x
 
mrspecker said:
Have u tried claiming pip if u work or don't work its not the condition it how it affects ur daily living u should claim it there website that tell u about it x
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What is pip? Do you have the website? I live in the United States. Does that make a difference? Thanks
 
PIP is only in the UK.

https://www.gov.uk/pip/overview It's a benefit which covers extra costs associated with your illness or disability involved in mobility (travelling, getting around outside) and/or daily living (taking care of yourself, e.g. washing, preparing food).

Does anyone know if there's some equivalent in the US maybe?
 
There is something here if we do not qualify for disability it is called SSI social security entitlement, its strictly need based and you can get it if you qualify for disability and if you don't. its just a little extra stipend to help. I am looking into getting it. Have already been denied once so this time I'm getting a lawyer. Last chance to try and get it I believe, we didn't qualify before because we had two cars in our family of 3. Big deal but to them it was like we were super rich.
 
That's different to PIP then. PIP isn't means tested, it doesn't matter how much savings/property/investments you have or how much you earn. The main benefits in the UK for people not healthy enough to work are means tested (but people can claim PIP as well if they qualify), I don't know much about them as I've never qualified, but I get PIP because I can't manage without carers (my parents).
 
AirCooledChillerMech said:
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.
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Welcome !
This site has been great for me and I hope it works out well for you too.
:dusty:
 
mrspecker said:
Do u have crohns iv got my colonscopy tmoz x
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I have been sick since 1997 but I was not properly diagnosed until 2006. I have Ulcerative Colitis. Right now I take Questran 2× day and Lialda once a day and I just started taking Metamucil. Anyhow, I have been "tired" since around 1996. I don't know why I remember the specific year. That is almost 20 years of being "tired". :-(
 
No one has posted on here in 10 days ?
I almost got heatstroke the other day ? Now I have been so terribly tired. No energy at all. I see my Endocrinologist on Wednesday. I want my blood tested.
 
That's a good idea to check your blood. I do so monthly myself to make sure my iron stores do not drop.

I get extremely tired as well, hard to tell if it is the medication or the disease sometimes...caffeine goes right through me and I think contributes to iron deficiency. Besides alternative ways for energy boost I don't have a lot of answers myself.

Hope you feel better.
 
KHCD5 said:
That's a good idea to check your blood. I do so monthly myself to make sure my iron stores do not drop.

I get extremely tired as well, hard to tell if it is the medication or the disease sometimes...caffeine goes right through me and I think contributes to iron deficiency. Besides alternative ways for energy boost I don't have a lot of answers myself.

Hope you feel better.
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Thanks !
 
Yep anyone else find that their hemoglobin has a big effect on their energy? I also find that elevated SED rate levels and CRP make me more tired because of all the inflammation the body is fighting.
 
I wish I could give reasons for my fatigue, but I have no clue. I just try to manage it by good planning and resting.
 
Ann Morgan said:
No one has posted on here in 10 days ?
I almost got heatstroke the other day ? Now I have been so terribly tired. No energy at all. I see my Endocrinologist on Wednesday. I want my blood tested.
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The problem with Extr. Fatigue is we tend to dissapear for long periods of time... :( I know the heatstroke fealing for sure. Just finished Pred Taper... always no fun.

I am actually going to see an Endo shortly. But I am going to make sure that I have everything together before I see him/her. I really want to have a thorough examination/blood panel, and need to know if anything is borderline.
 
Extreme fatigue?? omg, after 6 months on the waiting list I got to see my NHS gastro bloke, Steve Lewis, Derriford. I explained I bleed a lot, but sometimes the blood just gushes out. it's so bad, and I feel so ill. He ordered 5 vials of blood tests, and gave me that form with another. I said "and when will I see you again?". He said, "I've written in 8 months time" So I sat right back down in the chair and demanded a colonoscopy. He was not amused. Told me it will take 3 months. I'm so tired, and physically incapable of using my muscles well, I struggle to get my hands into the kitchen sink to wash a mug out. I cannot wash my hair cos I have no energy.

I have also been on pred for my Iritis (eye disease that's painful) and I still don't feel well. I'm so exhausted and am despising gastro blokes who don't care about how much blood we are losing, nor want to investigate, nor care for how exhausted we are. Life seems to get more exhausting with every year into the 2nd half of a century, and does anyone care? no. that's the shock, just bloods? omg, I really wish I could go to a country that has health care that does care. Hard to do with no insurance and no one to help when too fatigued to live a life of ordinary standards.

I'm so sorry to all suffering. I asked (as my nurse asked me to) could I have b12 bi monthly not every three months. No! Gastro bloke said one injection is enough to last a year. No luck here trying to find health and energy.

I wish you all luck finding a cure for the diabolical disease. Sooo tired and with no help from anyone. no understanding either. At least we have each other. I can't find understanding and empathy from anywhere else other than this thread.
 
mackraslo said:
I apologize if this has been addressed in the previous pages, But I havent had the time to read the whole thread yet.

Has anyone found anything that helps? Specifically supplements, herbs, vitamins, and "natural" treatments? Has anyone had any luck with Prescription medications?

I have been fatigued for the past 2+ years, and I have only recently been suspected of crohns and waiting for a diagnosis. I eat healthy, I quit smoking, I cut out caffiene except for green tea, and I exercise when I can(biking).

I would love to hear from someone who has found something that has helped them. Thank you, I really appreciate being part of this community. All the best to everyone!
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Welcome. A few things.

Stimulants dont really give us energy... however, some stimulants can help some people deal with 'zombie' feelings. I take vyvanse in the morning... so I don't drift off for the whole day. After I take it... I still lay down (like I always do), but I can do basic computer work. Stimulants can sometimes give you the illusion of energy... but if you act on it... you'll often get sick or even more tired. I still have to take drugvacations every month or so.

I also use light therapy... which can help with 'setting your internal clock' so you can sleep better at night.

And of course... there is the big 'P' (Prednisone). It does wonders for me and many others, but of course, it's not meant to be a long term cure, and has a lotsa side effects and dangers.
 
@ Hamster, I think we responded at exactly the same time. Yes, finding stimulants. Omg, your so right. Stimulants are a kind of fake energy and I feel they override the real health issue, kind of mask it. I am on Steroid Eye drops for Iritis. The taste down the back of my throat is horrible. I think we all know about prednisolone. Prednisone in US. it's a fake energy, I'm sure it's actually no good, it hides the really physical illness and issues and makes us make believe we might be well. However, steroids always cured my RA. it made the Crohn's worse, I lose weight on pred. Not good for a Crohnie. My eye disease isn't responding too well to the drops. So I'm a tad annoyed. I don't have energy from the drops, not like swallowing.

Never hear of Vyvanse in the UK. could you enlighten us others worldwide if you have something you feel helps. I would give anything for energy. sometimes, and it does go in phases, I'm completely disabled by the physical fatigue. It's as though the muscles are two sizes too small for the skeleton and I just need to sleep all day and night. I'm ashamed of my lifestyle and rarely have anyone to help. Not that I would be proud to have another human see my failings as an ordinary human. I so loved sport when I was younger. I'm a failure with no cure for the fatigue. I always need someone, but if they don't understand through experience then they too see me as a failure. I just want normal in my life. Am seriously considering DIY FMT, and wanting away from this feeling and experience of life. I did not choose Crohns. So knackered. Thanks all for being on this thread.
 
Spooky1 said:
@ Hamster, I think we responded at exactly the same time. Yes, finding stimulants. Omg, your so right. Stimulants are a kind of fake energy and I feel they override the real health issue, kind of mask it. I am on Steroid Eye drops for Iritis. The taste down the back of my throat is horrible. I think we all know about prednisolone. Prednisone in US. it's a fake energy, I'm sure it's actually no good, it hides the really physical illness and issues and makes us make believe we might be well. However, steroids always cured my RA. it made the Crohn's worse, I lose weight on pred. Not good for a Crohnie. My eye disease isn't responding too well to the drops. So I'm a tad annoyed. I don't have energy from the drops, not like swallowing.

Never hear of Vyvanse in the UK. could you enlighten us others worldwide if you have something you feel helps. I would give anything for energy. sometimes, and it does go in phases, I'm completely disabled by the physical fatigue. It's as though the muscles are two sizes too small for the skeleton and I just need to sleep all day and night. I'm ashamed of my lifestyle and rarely have anyone to help. Not that I would be proud to have another human see my failings as an ordinary human. I so loved sport when I was younger. I'm a failure with no cure for the fatigue. I always need someone, but if they don't understand through experience then they too see me as a failure. I just want normal in my life. Am seriously considering DIY FMT, and wanting away from this feeling and experience of life. I did not choose Crohns. So knackered. Thanks all for being on this thread.
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As far as Vyvanse, its actually an ADD stimulant, fairly mild. So I have a feeling it will help more for those who have ADD and not help as much for those who don't... but again... it doesnt give me energy, it just kinda keeps me from staring into space for the whole day, and gives me a very slight motivation to complete some tasks.

If you do the DIY FMT, let me know if it helps with the fatigue... if so, I'll do it in a new york minute.

I am going to try a few unorthodox methods to battle this in the coming months. Its definitely a losing battle, but if you try 100 different remedies... and maybe 1 helps you in some capacity.. that is at least something.
 
Spooky1 said:
Extreme fatigue?? omg, after 6 months on the waiting list I got to see my NHS gastro bloke, Steve Lewis, Derriford. I explained I bleed a lot, but sometimes the blood just gushes out. it's so bad, and I feel so ill. He ordered 5 vials of blood tests, and gave me that form with another. I said "and when will I see you again?". He said, "I've written in 8 months time" So I sat right back down in the chair and demanded a colonoscopy. He was not amused. Told me it will take 3 months. I'm so tired, and physically incapable of using my muscles well, I struggle to get my hands into the kitchen sink to wash a mug out. I cannot wash my hair cos I have no energy.

I have also been on pred for my Iritis (eye disease that's painful) and I still don't feel well. I'm so exhausted and am despising gastro blokes who don't care about how much blood we are losing, nor want to investigate, nor care for how exhausted we are. Life seems to get more exhausting with every year into the 2nd half of a century, and does anyone care? no. that's the shock, just bloods? omg, I really wish I could go to a country that has health care that does care. Hard to do with no insurance and no one to help when too fatigued to live a life of ordinary standards.

I'm so sorry to all suffering. I asked (as my nurse asked me to) could I have b12 bi monthly not every three months. No! Gastro bloke said one injection is enough to last a year. No luck here trying to find health and energy.

I wish you all luck finding a cure for the diabolical disease. Sooo tired and with no help from anyone. no understanding either. At least we have each other. I can't find understanding and empathy from anywhere else other than this thread.
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You had to wait six months to see the Gastroenterologist and now you have to wait three more months for a colonoscopy ! That is just wrong ! :ymad:
It is so wrong to make you suffer any longer than you already have. You may need a blood transfusion if you lose a lot of blood ? At one time I was giving myself B12 shots at home. Then another time I went to a doctors office once a month for a year for the B12 shots. Now I just take B12 Vitamin over the counter from my drugstore.

That NHS does not sound good. I saw many specialist doctors last year, including physical therapy. I had x-rays, ultrasounds, CT Scan and MRI and a DEXA bone scan. I had a colonoscopy. I had many, many blood draws. And I have prescription medications that I take on a regular basis.

Just during the last two months I have seen my Primary Care Physician, my previous Gastroenterologist, a new Gastroenterologist, my Endocrinologist, had a stool sample, had a blood draw, had an ultrasound of my kidneys, was prescribed the Vancomycin for my C-diff, and I am seeing my Urologist next Wednesday. And I see my Psychiatrist next month. This may sound like a lot of doctor activity, but last year I was twice as busy ! Oh, yeah, and I saw my Dentist recently too. :yfaint:
 
Spooky: You spoke about needing help ? I am disabled and I just turned 55 years old. I live in an apartment complex. I have to walk a very short distance to toss out my household trash into a large trash bin. I walk very slow and I walk hunched over ( limited mobility in my neck and I have shrunk two inches ) and so I have had at least three of my neighbors offer to take my trash bag to the large trash bin for me.Talk about embarrassing ! If I was 30 years older I would not be embarrassed for people to offer to help me, but I am only 55 ! People older than me offer to help me reach products on the shelves of grocery stores. And people are always opening doors for me. ( Sigh ). Every doctor or doctors assistant asks me "how are you" and the first word out of my mouth is "tired". Everyone try to have the best week you can have. And take care of yourself.
 
prednisolone. Prednisone in US. i
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Do you mean prednisone is the US name for prednisolone? Prednisone and prednisolone are the same except prednisone has to be changed by the liver into prednisolone (I think).
 
The NHS moves fast when it needs to. It doesn't have enough resources so it has to prioritise. I believe it's the best healthcare system, at least in theory, but I think it may be in practise too. I have constant tests, appointments, hospital stays, surgeries, and it costs me nothing and when I have energencies there is no wait at all. The only problem is when you're not an emergency or urgent, you can wait many months.

Spooky - is this the first gastroenterologist you've seen? The problem here is probably not the system but you having a doctor who doesn't recognise the urgency of your situation. Can you get a second opinion? Do you have a good GP? Your GP may be able to speed things along. Sometimes GPs can refer you for tests without a consultant, though many would not find that appropriate. Your GP could also order blood tests, and if the blood tests show abnormalities, or if your symptoms are deteriorating or if you have got new symptoms since seeing this last gastroenterologist, all those things can be used by your GP as evidence you need faster tests and appointments and maybe get you b12 monthly too.

I have found a good GP vital, you need one to advocate for you until you find a better consultant. I never continue with a doctor I'm not happy with.

Additionally, if you are truly struggling to do everyday tasks, have you considered applying for PIP? https://www.gov.uk/pip/overview Though I would warn you that generally someone with Crohn's as their only medical condition would not qualify, and you need to have doctors who will support your claim. But let me know if you have any questions about it. It pays for any help you may need looking after yourself and/or getting around. Having help should help your fatigue and overall health.
 
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I have a new young doctor due to mine retiring. She doesn't have good words said about her. My gastroenterologist left, but I know most the team there. Derriford Hospital in Plymouth has a notorious backlog of patients, I think it's the top of the league for waiting times. I know it's in the top 3 of failing hospitals.

Tomorrow I'm travelling up country to see about a house move. I am only doing this due to the time it takes to get to hospital, snail about the carpark with everyone else looking for a parking place, wait up to 4 hours to see specialist then the long journey home. I can't physically do it anymore, esp as the service and treatment is crap. that's confirmed by other Crohnies I know in this area.

I do get DLA, UnXmas, fortunately.

next time I am gushing blood I will take photos of my loo and get into A and E. They are obliged to treat someone at A and E. I probably don't go there enough as it's such a journey and of course I am pretty knackered.
 
You're moving house to make it easier to get to hospital? It doesn't sound right that anyone should have to do that. :( I'm glad you get DLA, it sounds like you need it. Have you been to A&E many times before? I'm sure you're already aware, that they can help with dehydration, or other complications of blood loss, and may be able to arrange tests for you, but they probably won't be able to help with long term treatment options.

I hope you get some good medical care soon.
 
@Spooky! Follow up with the physicians blood work and ask to see it! (our blood work in the US will tell us what the normal ranges are so we know) Make sure they make a plan for what they are doing next, seeing you in 8 months is inexcusable. So Sorry about the fatigue. Hang in there and try to take advantage of good days, but don't over do it! Hugs
 
Ann Morgan said:
Spooky: You spoke about needing help ? I am disabled and I just turned 55 years old. I live in an apartment complex. I have to walk a very short distance to toss out my household trash into a large trash bin. I walk very slow and I walk hunched over ( limited mobility in my neck and I have shrunk two inches ) and so I have had at least three of my neighbors offer to take my trash bag to the large trash bin for me.Talk about embarrassing ! If I was 30 years older I would not be embarrassed for people to offer to help me, but I am only 55 ! People older than me offer to help me reach products on the shelves of grocery stores. And people are always opening doors for me. ( Sigh ). Every doctor or doctors assistant asks me "how are you" and the first word out of my mouth is "tired". Everyone try to have the best week you can have. And take care of yourself.
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I understand completely. Its embarrassing feeling like a 90 year old in a 43 year old body. When I go out, which is rare, I get into lots of embarrassing situations where others ask me for 'help' since I appear to be in normal health, and I'm quite tall. But I can't really lift things, and I can't bend over... and I try to stand as little as possible, so it usually ends up bad.

Taking out the trash takes a long time for me... I just pace myself. I do manage to walk about 2 blocks every weekday so that I can pick up my daughter from school. Its my only cardio, I do it very slowly, and about an hour afterwards, I am usually paying for it... but Ive worked that 'low' into my routine.
 
Well, the other thing that really annoyed me at the gastro appointment was that he asked to know what meds I was on. when I mentioned that my gp would only allow me one loperamide a day he laughed out loud. The GP said if one doesn't work then 8 a day won't either. I asked him if he could have a word with her and he said no, it's not for him to dictate what she allows me.

So now I just buy as many as I can for myself.
but I do know to take it easy, I too feel 90 years old, can't walk far, can't stand for long, can't sit for long and get exhausted if people speak to me. If only I could focus too.

Never mind, let's hope there is a cure somewhere along the line. But thanks for your understanding all. There's no one around to really know how it is apart from all of you.
 
Spooky - eight loperamide can definitely do more than one! (As I'm sure you know!) Before I had a stoma, I would take ten or more and that worked even better (though that's more than recommended). You really do need a better GP. It's also perfectly acceptable for consultants to suggest GPs make changes to a patient's medications, since the consultants are specialists. You could ask for a prescription for Lomotil, you can take loperamide and Lomotil together. Maybe your doctors would be happier about doing that than increasing your loperamide.

Being so underweight I don't have problems with people not recognising that I'm ill. Though they do think I'm anorexic. :ybatty:
 
Yes, people think I'm anorexic too. It's a bit rude and hurtful, though at this age I bloody well put them right. Just need to put my doc and gastrobloke right too. I feel so offended that they don't treat me. It's as though they want us to drop dead. Really I should just name and shame those men at Derriford, they have absolutely nothing on the old hat docs of years ago. I've been seen there for 30 years. My god, their standards have fallen badly.

Does anyone on here know if we could, sort of, go on holiday to france or spain with our NHS card and get treated there? I just feel like giving up on this country. But thanks for the responses everyone. If I don't have the medical world on my side I know you lot understand which helps just knowing you also go through it.
 
Hi all,

I'm not sure really if I should be here or not because I am undiagnosed. However, I do know that I do suffer with extreme fatigue! Reading through this thread, I realise how much I can relate!

:ghug:
 
Hey, I'm only recently diagnosed and have been suffering for awful fatigue for a long time now. I had only just stopped pushing myself, and have just began to Trust my body and will actually stay in bed when I'm feeling like I need to. Which can be a lot! I kinda feel vindicated now that I have a diagnosis, I've been chastising myself for feeling so 'lazy' but now I know better!! It is very hard to explain to people, and very hard for them to understand unless they are going through it, so I really appreciate reading all of your stories xx
 
Welcome Hayz and kellehbeans! I hope this forum helps you! It at least lets you know that there are people dealing with extreme fatigue as well!
 
HI all,
It was a rough weekend, no energy for anything. I always feel soo guilty when I don't have the mental or physical energy to do anything. I was feeling better yesterday and today I don't feel too bad, but it is early! Rainy day and I need to go to a meeting tonight! Have a wonderful day my friends and stop to look at God's beautiful creation. (Even if it is raining like it is here! hehe)
 
I'm now trying cymbalta it helps with pain which may indirectly improve my energy. I'll report back on the progress.
 
I just got prescribed Lomotil today had to get it from my hematologist, the GI doc told me it was bad and wouldn't prescribe it because it "masks symptoms" well no shit that is what I want. He said it doesn't treat the problem, well I am trying to cure the problem and to no avail. The Budesonide is total crap, tried taking it for 18 days, probably going to switch to prednisone, i have had 3 entyvio treatments and not working at all. I wish the doctors had to feel what we feel, if he did maybe he would care more about getting me better or making me comfortable.
 
Lomotil helped my symptoms quite a bit. I was very pleased to have my illness "masked" - it meant I didn't have diarrhoea quite so many times a day!
 
Anybody ever heard of Myers Cocktail ? It is an intravenous nutrient mixture. It contains certain vitamins. I saw it on YouTube one day. I was just wondering if this would be an acceptable treatment for fatigue. It probably works better than just taking over the counter vitamin pills ? I also saw a video from two years ago on YouTube from the Dr. Oz Show about intravenous vitamins. A lady that was featured on the show has an IV infusion once a month, every month, and it is a cocktail of different vitamins. The show was not endorsing this treatment, just making it known that it was available and it might work for some folks. The lady on the show did not say she had any certain physical illnesses that she was treating, but that she led a busy life and needed the boost of energy that the infusions gave her. I am getting an infusion tomorrow, for the first time, but it is for my osteoporosis. It is some kind of drug called Reclast ? I have osteoporosis in my lumbar spine and am a high fracture risk. I will be getting this infusion once a year instead of taking a once a week prescription pill for my osteoporosis. Thanks for listening.
 
hamster139 said:
I understand completely. Its embarrassing feeling like a 90 year old in a 43 year old body. When I go out, which is rare, I get into lots of embarrassing situations where others ask me for 'help' since I appear to be in normal health, and I'm quite tall. But I can't really lift things, and I can't bend over... and I try to stand as little as possible, so it usually ends up bad.

Taking out the trash takes a long time for me... I just pace myself. I do manage to walk about 2 blocks every weekday so that I can pick up my daughter from school. Its my only cardio, I do it very slowly, and about an hour afterwards, I am usually paying for it... but Ive worked that 'low' into my routine.
Click to expand...

Just a quick note.......so, I went to Sprouts Grocery Store for the first time in a long time today. I needed two items at Sprouts that a regular grocery store would not sell. I am becoming a vegan so I also needed the soy milk. I like the soy milk that is in the refrigerator section, not the kind that is not refrigerated. So, what do you know.......the soy milk I wanted was about 8 feet up on the very top of the refrigerated section for soy milk ! :sign0085: Go figure ! I had to ask a tall young man employee to get the milk for me (and then it even looked like HE had to REACH for it ). Why on earth would they put any product up that high to where even a grown young tall man could just barely reach it ? Thanks for listening.
 
sehart717 said:
I just got prescribed Lomotil today had to get it from my hematologist, the GI doc told me it was bad and wouldn't prescribe it because it "masks symptoms" well no shit that is what I want. He said it doesn't treat the problem, well I am trying to cure the problem and to no avail. The Budesonide is total crap, tried taking it for 18 days, probably going to switch to prednisone, i have had 3 entyvio treatments and not working at all. I wish the doctors had to feel what we feel, if he did maybe he would care more about getting me better or making me comfortable.
Click to expand...

The other day I was thinking about how little time my Specialists have to spend with me when I visit them. They are so rushed and they don't want to listen to what I have to say. Some of them are very good at controlling the flow of the doctors visit as to not offend the patient, but other doctors just have no bedside manners. Why is it so hard to find a good doctor ? :voodoo:
 
Hayz said:
Hey, I'm only recently diagnosed and have been suffering for awful fatigue for a long time now. I had only just stopped pushing myself, and have just began to Trust my body and will actually stay in bed when I'm feeling like I need to. Which can be a lot! I kinda feel vindicated now that I have a diagnosis, I've been chastising myself for feeling so 'lazy' but now I know better!! It is very hard to explain to people, and very hard for them to understand unless they are going through it, so I really appreciate reading all of your stories xx
Click to expand...

Welcome:dusty: I totally understand what you are talking about. My sister has many illnesses but she seems to be able to do so many things ! I have many illnesses too, but I am fatigued. I don't get it. She can walk a long way and pull weeds while on her knees in her backyard, spend hours running errands and going to thrift stores. She is always saying she is "tired", so I thought she meant she was "tired" all of the time like I was. But then I find out that she is only "tired" sometimes. I thought she and I had the same type of "tired". I went to thrift stores with her once for two hours and I was exhausted, and all the thrift stores were connected and located in a strip mall ( so no hopping in and out of the car ). I had to sit on a bench and rest ! Thanks for listening.
 
Ann - I'm getting the infusions for osteoporosis soon too. I have awful bone density and a fractured spine (and I am a lot younger than you!). I've had infusions of other things in the past, it's no issue at all, so long as you're ok with needles.
 
Ann Morgan said:
Anybody ever heard of Myers Cocktail ? It is an intravenous nutrient mixture. It contains certain vitamins. I saw it on YouTube one day. I was just wondering if this would be an acceptable treatment for fatigue. It probably works better than just taking over the counter vitamin pills ? I also saw a video from two years ago on YouTube from the Dr. Oz Show about intravenous vitamins. A lady that was featured on the show has an IV infusion once a month, every month, and it is a cocktail of different vitamins. The show was not endorsing this treatment, just making it known that it was available and it might work for some folks. The lady on the show did not say she had any certain physical illnesses that she was treating, but that she led a busy life and needed the boost of energy that the infusions gave her. I am getting an infusion tomorrow, for the first time, but it is for my osteoporosis. It is some kind of drug called Reclast ? I have osteoporosis in my lumbar spine and am a high fracture risk. I will be getting this infusion once a year instead of taking a once a week prescription pill for my osteoporosis. Thanks for listening.
Click to expand...

Havent heard about it... but I think its an absolute must to check for deficiencies. Its very important for all of us to try and 'fine-tune' our diet if we have any deficiencies at all. And sometimes that does mean having to use IV injections if we can't properly absorb nutrients.

But the problem with Crohn's with Extreme Fatigue is that the fatigue resembles lots of other ailments. So unfortunately, lots of things that help others with energy won't help us. I haven't had any luck with nutritional supplements.. I wish I had.
 
Ann Morgan said:
The other day I was thinking about how little time my Specialists have to spend with me when I visit them. They are so rushed and they don't want to listen to what I have to say. Some of them are very good at controlling the flow of the doctors visit as to not offend the patient, but other doctors just have no bedside manners. Why is it so hard to find a good doctor ? :voodoo:
Click to expand...

I'm lucky, my GP and my main surgeon spend ages with me. However, I had to go through a lot of bad doctors before I found them (and I still haven't found good doctors for all the areas in which I need specialists). Only downside is I wait for an hour or more each appointment with them. GP appointments here are given a ten minute slot. Because my GP spends enough time with her patients, there's no way she can see them for only ten minutes. I call before I leave the house to find out how late she's running, otherwise I'd be spending hours in the waiting room. I can't do that with my surgeon because the hospital is a long drive away; with him I just have to wait.
 
Not sure if it's just me, but does anybody experience some real bad fatigue after a BM?? I literally had to lay down afterwards because my stomach was burning up, and I just felt, so, so tired!
 
kellehbeans said:
Not sure if it's just me, but does anybody experience some real bad fatigue after a BM?? I literally had to lay down afterwards because my stomach was burning up, and I just felt, so, so tired!
Click to expand...

Im kinda the opposite. Not that i get a boost of energy after a BM... but it kinda picks me up a little. Or maybe its just psychological... since I generally feel much better in other ways after a BM.
 
hamster139 said:
Im kinda the opposite. Not that i get a boost of energy after a BM... but it kinda picks me up a little. Or maybe its just psychological... since I generally feel much better in other ways after a BM.
Click to expand...


I'm not sure whether it is just because my body doesn't feel empty, and that drains me. No idea, but all I know is it makes me feel worse!
 
I know we've been discussing this on the Undiagnosed thread, but I might as well add here that before I got a stoma, it would take me an hour or more to empty my bowel. By the time I had my surgery it was taking three hours some days. Getting up and sitting down and straining and having to put gloves on and remove some by hand then getting up again sitting down and straining again and on and on and it hurt and yes, I was exhausted afterwards. Especially the times it happened in the middle of the night. But I would eventually finish and feel relieved and exhausted, other times I'd sleep on the bathroom floor for a bit because I knew I wasn't finished but it wouldn't come yet.

(Can I mention again how happy I am to have a stoma now?)
 
I cannot imagine how amazing you must feel with a stoma, especially after that! You definitely have been through the wars! I feel bad for complaining about 30-45 minute bathroom breaks!
 
Hi all, I've had Crohn's disease for 5-6 years and only recently has fatigue became seriously enough to affect me on a day to day basis.. Any symptoms fatigue related previously I could just man up and cope with. Recently I've found every muscle seems to weigh a tonne and picking up something feels twice as heavy as usual. Getting up to fast makes me light headed and concentration doesn't last long. I've recently had my first child and not being able to pick him up when really bad is mentally depressing. I wanted anyone's advice on how to combat extreme fatigue. I try eating and drinking things with high sugar for energy, I try sleeping but wake up more tired and unmotivated than before. Any more ideas anyone ???
 
hamster139 said:
Im kinda the opposite. Not that i get a boost of energy after a BM... but it kinda picks me up a little. Or maybe its just psychological... since I generally feel much better in other ways after a BM.
Click to expand...

The same thing happens to me, I seem to feel better after having a good BM in the morning. All of a sudden I am washing dishes or vacuuming my carpet ! :ylol:
 
I took a two hour nap yesterday afternoon. I was still tired when I woke up. I guess I sort of rested/slept, but I WAS dreaming. I couldn't figure out a specific reason why I had to sleep for two hours in the afternoon, I did not do anything different than my normal stuff. This has happened before in the afternoons, occasionally.

I was recently on jury duty for three days and at about 3pm in the afternoon I just lost all of my focus and concentration - - - but I had to try to be as attentive as possible because my decision in the jury room would be affecting a persons life ( it was a DWI case ).

Thanks for listening.
 
Just had to withdraw from my college classes this summer. I finished one but I can't seem to stay awake or focused enough to do all the reading. This disease is so tiring and the pain is so distracting. Especially hate how it makes me not be able to give my best as a mom. Physically and emotionally
 
sehart717 said:
Just had to withdraw from my college classes this summer. I finished one but I can't seem to stay awake or focused enough to do all the reading. This disease is so tiring and the pain is so distracting. Especially hate how it makes me not be able to give my best as a mom. Physically and emotionally
Click to expand...

Soo sorry Sehart. This disease zaps your energy and I feel for you. Concentration is hard for extended periods. I hope you can find a solution! That being said sometimes we don't have the energy to be able to find a solution!
 
@Dippydale---I just try to pace myself and rest when I need to. That being said, I don't work now, don't have children and don't have any urgent responsibilities. Here are some suggestions but everyone needs different things. Tai Chi is something I liked. Slow movement and gentle, but 10-20 min is all. Same for Gentle Yoga or walking for exercise. But sometimes you just need to rest your body and mind. (not necessarily sleep) As for food, sugar and caffeine give you energy for a short time, but then you crash. Eat healthy if you can and make sure you get lean protein and water. Everybody is different in what they need, so you have to try things and see what helps. Also just some days you will be really fatigued and need to adjust that day. It is a lifestyle change unfortunately and motivation becomes an issue. (haven't figured out what to do about that yet) I hope this helps.
 
kellehbeans said:
Not sure if it's just me, but does anybody experience some real bad fatigue after a BM?? I literally had to lay down afterwards because my stomach was burning up, and I just felt, so, so tired!
Click to expand...

For me I think its the intestinal cramping that can go with it. I can be totally wiped out after a trip to the bathroom. Plus, when my energy is super low, everything fatigues me-no reason this should be an exception I guess!
 
If I exercise - I do find more energy after a while...but getting motivated to do it is another thing altogether. If I can make myself do it - I tend to be in better spirits too. Yes, the frequent BM's wipe me out. I sometimes think I may be dehydrated. I hate drinking plain water. I've come up with a drink of club soda with splash of cranberry and some lime. I can get that down. Although they say bubbles are not good - I do it anyhow. I am not sure how else to hydrate.
 
sometimes I have to head straight for bed after a BM. it's as though all my energy zoomed straight down the loo, my legs ache and I feel weak. I know how it is to cut class. I could only ever study for a couple of hours per day and then it was in shorter sessions. so part time degree study suited me. I never manage full time anything. I too have problems focusing. It's awful when its when someone is chatting to you and all you want to do is fall asleep.

At least we all understand. It's hard to find others that can relate to what we suffer.
 
my fatigue has been the worse symptom for me. It started a year ago without any bowel issues so i put it off to stress or depression kicking in. But it continued to worsen so I eventually saw a sleep specialist. I did a sleep study and MSLT. it showed that despite normal night time sleep I still suffer from moderate daytime fatigue (I fell asleep on all MSLT naps within 9 minutes). He couldn't say what was causing the sleepiness but reassured me that this is not just being lazy! He said I would likely be diagnosed with idiopathic hypersomnia in the future.

I'm not sure if what I'm experiencing is crohns related or if it's something else all together... I'm now having bowel issues but the fatigue kicked in long before the bowel issues. Do you experience fatigue only during a flare or during remission too? Has anyone else done a sleep study and MSLT? I was started on Vyvanse for daytime alertness. Has anyone else had experience with medication for daytime alertness? what was your response?
 
@Sar As much as I can remember I didn't have as much energy as my friends, but I just pushed through it. After being diagnosed with Crohn's it got worse. I could no longer work an 8 hour day. I would consider myself in remission with intestinal symptoms, but fatigue is still an issue. I no longer work due to it. I try to rest a lot. I have never taken any medication for it and they haven't found an additional reason for the fatigue. I just try to manage it and luckily I have a supporting husband.
 
I was only diagnosed 5 weeks ago but have been symptomatic for 3 months and have been extremely fatigued the entire time. It makes working extremely hard as I work 11 hour days. When I get home I have NO energy to play with my 2 children. It is very depressing. I hope it will end soon or I will adjust to it.
 
@Cody hang in there an hopefully if you get on medication that gets you into remission you will start getting energy back. It is very hard to deal with and at some point you may have to rethink your lifestyle. Take care you yourself1
 
It is hard to juggle between work and a life outside work, especially when you have severe fatigue. I had to cut back my hours at work and I'm applying for long term partial disability. I can only manage a max of three hours work right now. Otherwise I don't have the energy to even get back home. I agree that eventually lifestyle has to be looked at, once I put my health above my job, I felt such a huge relief.
 
Sar said:
It is hard to juggle between work and a life outside work, especially when you have severe fatigue. I had to cut back my hours at work and I'm applying for long term partial disability. I can only manage a max of three hours work right now. Otherwise I don't have the energy to even get back home. I agree that eventually lifestyle has to be looked at, once I put my health above my job, I felt such a huge relief.
Click to expand...

Thank you so much for this post! I agree once I put my health above my job was a huge relief!
 
Just decided to join this support group... fatigue is a big issue. I have to have an "energy budget" for the day, so I don't start anything I can't finish.
However, things are a lot easier since I finished work and I sympathise with anyone who still has to go to work when colleagues (and especially bosses) don't understand the astonishing levels of fatigue we sometimes have.
Cheers, everyone.
 
i'm trying to get some energy together for a house move next Monday. I started to sort things two months ago and i'm so wiped out all day, the fatigue is so exacerbated by stress. I will do nothing for two months after i move, i swear. Everything can stay in their boxes. I'm too tired to cope really.
 
Spooky1 said:
i'm trying to get some energy together for a house move next Monday. I started to sort things two months ago and i'm so wiped out all day, the fatigue is so exacerbated by stress. I will do nothing for two months after i move, i swear. Everything can stay in their boxes. I'm too tired to cope really.
Click to expand...

@ Spooky - I hope everything can go smoothly for you! I agree moving sounds exhausting and daunting! We have talked about moving a while ago, but the idea sounds well actually unbearable. I hope the new home is good for you Spooky and brings you some peace and healing!

@Agent X20 - Welcome! Thanks for sharing your insights and support!
 
Agent X20 said:
Just decided to join this support group... fatigue is a big issue. I have to have an "energy budget" for the day, so I don't start anything I can't finish.
However, things are a lot easier since I finished work and I sympathise with anyone who still has to go to work when colleagues (and especially bosses) don't understand the astonishing levels of fatigue we sometimes have.
Cheers, everyone.
Click to expand...

I agree I so have an energy budget as well. I don't even like to plan little outings each day, I like a day in between. Have you ever heard the spoon theory? http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ It is a good way to explain fatigue! I love this article, but I cry every time I read it. It is such a good description!
 
:ack::ack:
Essieluv said:
The fatigue is starting to affect my attention span. I cannot seem to concentrate on anything. I can't read for very long, the sentences get all jumbled. And it's so hard to partake in conversations....
Click to expand...

I know exactly how all of you feel! I am so tired all the time that I just want to sleep. I can get up & do one thing & I'm completely done in! My husband tries to be understanding but it really doesn't get it, just worries himself sick over me!

I would like to join this group!
 
so agree, aching n tired all the time .. at the mo im at home waiting to start a new job, ( still weary doing nowt )which will be better for my mental health, as my old boss was the devil incarnate... but it will mean longer working hours n more traveling, so iv very long days ahead of me , but i dont care as i will be treated much better, like the human i am ,not something on the bottom of a shoe :mad2:
i am hoping i'll manage the extra, no choice really , but at least i wont be as busy all day there, so that might counteract it a bit...:dusty:
keep hanging in there peeps..:ghug:
 
Spooky1 said:
Yep, join the club. Life is so exhausting I get very little done and feel so ashamed of myself
Click to expand...


It is hard! We think that you can just push yourself to do things and that makes it worse and then you can't even get the everyday life things done. I am so glad for this support group that understands and supports us in this journey.
 
Thanks for the telling off, lol. I'm my own worst critic sometimes. Would just love to have some normal energy and less of the physical and mental fatigue.

Yep, it's a great support group this. I'm so pleased it's here, otherwise we would have no one understanding what we go through.
 
Question: looking for similar experience.

I used to have a couple good weeks followed be a few bad. Now I'm luckyto have a few good days in a month. I have no idea what changed. Blood work looks good (iinflammation markers continue to drop, not anemic, B12, are all looking good.

Quite perplexed.
 
Spooky1 said:
Thanks for the telling off, lol. I'm my own worst critic sometimes. Would just love to have some normal energy and less of the physical and mental fatigue.

Yep, it's a great support group this. I'm so pleased it's here, otherwise we would have no one understanding what we go through.
Click to expand...

so true, i only wish i'd found it sooner, when times were very bad for me pre op, but im glad i did find it , it helps me a lot, i have learnt things i did not know, i hope i have been able to help n support others, n bring a little fun along the way, for with a laugh now n then things feel better i think . as for the telling off sometimes it's got to be tough love :ylol2: any time you need a gee up let me know :)
if you find some normal energy send a bit my way kid would ya..:hug:
 
It does help to have someone on here that makes us smile. Some of the threads do give me a giggle, the rest is support and be supported. Yep, I wish I had know of this site years and years ago. Would have helped me through some hard times.
Thanks for being here everyone.
 
hi ye some threads are funny, i once spent an entire sun afternoon on the joke thread laughing out loud at some, sure cheers you up :ylol:
you all take care now you here! :ghug:
 
DJW said:
Question: looking for similar experience.

I used to have a couple good weeks followed be a few bad. Now I'm luckyto have a few good days in a month. I have no idea what changed. Blood work looks good (iinflammation markers continue to drop, not anemic, B12, are all looking good.

Quite perplexed.
Click to expand...

I hear you!!! I don't really show any signs of inflammation but still get the fatigue! (as you not anemic, B12ok and even Vit D looks good)
The elusive fatigue! Constantly having to adjust my life for it. sigh
 

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