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Autoimmune disease

Managing fatigue

8 replies

JanuaryJames · 19/07/2019 17:30

Hi, I have PSC (primary sclerosing cholangitis), hypothyroidism and Crohn's. I seem to have so much fatigue lately, more than ever. I'm supposed to go out tonight, just a quiet dinner with friends - would be lovely- but I feel a bit under the weather, might be going down with something, and just soooo tired. I could force myself but I worry then about feeling wiped out for the next 2 days. I feel like I'm always cancelling on people 😔

How do those of you in a similar situation manage this? Do you push on through the fatigue? Is that detrimental? I worry that people think I just can't be arsed. Feeling a bit sad about it.

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WitchDancer · 19/07/2019 17:38

I would push through tonight because I have next week off. It all depends on your plans for the coming days

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TinselTimes · 19/07/2019 17:48

I’d go out tonight then plan on resting a lot over the weekend. It’s all about pacing and planning regular rest times. It’s so easy to get isolated when you have chronic illness (speaking from experience here!), you have to prioritise seeing your friends.

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JanuaryJames · 19/07/2019 18:21

I think you're both right witchdancer and tinsel. I do have something on tomorrow morning but I think that I can reschedule and rest if I need to. God it's such a pain having to think this way!! But thank you!

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Allli · 25/07/2019 18:54

I hope you find something to help you with your fatigue. Personally I’ve found acupuncture has helped me back to part time working with my ME/Chronic Fatigue. It’s been a 12 year journey for me and pacing myself and planning ahead to allow lots of rest between activities or events helps. I get the fear before I meet friends for dinner etc in case I have to cancel last minute, but they understand as they are true friends. Have a great time if you go or a great relaxing time if you decide not to! Your friends will understand :-)

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JanuaryJames · 25/07/2019 19:50

Thanks Allli, I did go out after all and was so pleased I did! Had a little lie in the next day. It sounds like you've really explored what works for you. I think I need to start thinking about this properly for myself too. Although I'm relatively informed about my health conditions, take all my meds etc, it's been a difficult few years (unrelated to my health) and I haven't focused enough on ways to help myself more.

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SaxxedtotheMax · 25/07/2019 19:56

Allli Where on the body do you have the accupuncture? Is it all over?

I was talking to my Osteopath about it, but we didn't go in to depth, but maybe I should consider it?

I hope you are feeling o.k O.P Flowers

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tryingtobebetterallthetime · 25/07/2019 20:16

Hi,

Fatigue is a major symptom of IBD (Crohn's and colitis). I have ulcerative colitis and when it is flared I really struggle with feeling very tired. It sometimes is so bad I could swear my legs are filled with concrete!

It is hard to overcome and I know just what you mean about worrying people just think you are lazy.

I find keeping my disease in as good a control as possible helps but all IBD sufferers know how hard that is. I am lucky to have found a really good gastroenterologist who just gets it. I am on Entyvio and my energy is coming back. If you can, try and find a good GI. It makes a huge difference.

Also, I try to practice "pacing." I try to spread things out. I don't try to do everything the same day or same hour. If I am cooking a meal that requires, for example, a lot of prep I do it in bits and sit down in between. I don't do multiple loads of laundry the same day.

I know that regular exercise like walking can help too, but I am not always so good at that.

I do find resting for a bit in the afternoon can help. Usually I do not sleep, just lie down and read or watch something.

Don't force yourself to do everything. I am glad you went out and enjoyed yourself. I find myself enjoying things like that also, as long as it does not involve a lot of traveling to get there and there are facilities around so I don't stress about that.

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Allli · 25/07/2019 21:06

Saxxedtothemax
I’m good, thanks! Re my acupuncture treatments, I tell the acupuncturist what’s wrong with me and all about what’s happening in my life, tiredness, stressful things, work, sleep patterns, gut/tummy probs and everything, and she asks questions until she gets a full picture of what’s wrong. She then works out which acupuncture points on my body to put needles in. The needles interrupt blockages in energy and make it flow again or something. I don’t mind how it works, just grateful it does for me! The needles can be anywhere. The odd ones a bit jaggy but most I don’t feel at all. The treatments can work instantly for me, (like unclogging my blocked or ringing ear with needles nowhere near my head!) or they can kick in hours later when I realise I feel different or better. Sometimes I feel worse for a while before I feel better, just depends on what all needs fixed. I go to someone who is a member of a professional body, and she’s the second acupuncturist I’ve seen. The first one didn’t seem quite so good. Like everything, you can get good hairdressers, joiners, dentists etc and you can get not so good ones! It works for me. And that’s her job so she should be more expert than my GP who offered 6 sessions but is so busy with other patients and illnesses, I’d prefer an expert with many years experience so I politely refused his offer and stayed with her. It costs &40-£60 a session where I am. Some do a double session the first time to get all the background. Good luck with your health treatments whatever you go for, I hope you feel better with them. Flowers

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