Extremely fatigued : I struggling with fatigue. I... - LUPUS UK

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Extremely fatigued

ijeasike profile image
33 Replies

I struggling with fatigue. I am useless in the weekend. I barely can function. I am doing a bare minimum during the week. I am just exhausted. I do some yoga and I go swimming once a week but on a good week twice. I am considering stopping my membership because some weeks am unable to go. Please any advice on how to help with my energy. Thank you

Ije

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33 Replies
Tiggywoos profile image
Tiggywoos

I have complete sympathy for you as will many others on here . Fatigue is so so hard to manage . I’m sure you’ve googled spoon theory ? That can help in making you more aware of how even simple tasks can drain us so must be factored in . Even showering uses energy when you have chronic illness . Sometimes I find just a bit of fresh air helps but it’s such a fine balance between enough or too much . Saving energy for the most important things is essential eg work / caring for family etc .

I’m so sorry I can’t help you but wanted you to know you’re not alone . It’s great you do yoga and swimming 🙂 . Try not to be too hard on yourself and avoid compare life now to how it used to be . Take care x

Ps try and explain spoon theory to someone close to you . Took ages but my husband understands it now …

ijeasike profile image
ijeasike in reply to Tiggywoos

Thank you. I will try the spoon therapy.

PMRpro profile image
PMRpro

healthunlocked.com/pmrgcauk......

You might find the links in this post from another forum useful. It is on here somewhere but I'd have to find it!!! Almost everyone with an autoimmune disorder have the problem - it doesn't matter what the label says - they are all the same.

Why not go to the pool and not swim but just do some very gentle movement in the water - you can do a lot more in the water than on land and get a lot more bang for the buck.

ijeasike profile image
ijeasike in reply to PMRpro

Thank u. I will try and do that. I use the swimming for exercise

PMRpro profile image
PMRpro in reply to ijeasike

Yes - I assumed that but it may be a bit too much just now, By doing things in the water you can carry on exercising but not get quite so fatigued. Just be gentle on yourself.

jilk profile image
jilk in reply to PMRpro

I so agree with all autoimmune disorders having so much in common, i wonder if labels really matter. I am convinced by my experience from a type of dementia and usual pain, fatigue etc, to only restless legs [?now looking at vitamin b1 definiciency for that] that removing foods , using a food diary with BP recording twice a day, has been the answer for me, over thirty years to achieve this. thanks for the rant.

PMRpro profile image
PMRpro in reply to jilk

Actually, I think we all have our own version of an a/i disorder, jilk syndrome or PMRpro syndrome for example. The trouble is, the labels were written yonks ago before we had the science or technology to identify so much and it results in doctors looking at a patient and deciding "it can't be x, y, z as you don't tick the right boxes" and nothing happens. This blinkered view harms us all ...

Djlr profile image
Djlr in reply to jilk

pillfold.com/collections/bo...

ijeasike profile image
ijeasike in reply to Djlr

Thanks I will read it. I am currently writing an essay on my experience with lupus.

BrooklyneDeanne profile image
BrooklyneDeanne

Hi, I don’t have advice but do feel so bad for you! I have also been dealing with debilitating fatigue for the past several weeks. It’s absolutely horrible. I hope you start feeling a little better soon. 🙏 Take it easy and be gentle and patient with yourself.

Djlr profile image
Djlr in reply to BrooklyneDeanne

pillfold.com/collections/bo...

BrooklyneDeanne profile image
BrooklyneDeanne in reply to Djlr

I need to get this - thank you!

ijeasike profile image
ijeasike in reply to BrooklyneDeanne

Thank you. I think the worse part are being exhausted for doing absolutely nothing. My son says to me "mummy you are always tired".

MrsMarigold profile image
MrsMarigold

Hi ijeasike. It’s helpful if you list all your symptoms and autoimmune diseases. I do not want to assume it is lupus or only lupus.

What helps me I think is 1. A very unexciting diet lol. No sugar or very low, good protein and recently in last 2 months is green matcha tea. Very weak in the beginning (the tea!) and I’m almost making it as per directions. 2. If my body says sleep and it’s 11am. I don’t flinch anymore. That alone lifts my overall attitude. My acceptance to do what my body says. ( I do not work) 3. I swim too but not for a workout per se. I look at as physical therapy. I will be taking adult ballet in next few months. Literally moving dining room out and transforming it into my little studio. 3. I drink water and take a few supplements I like. 4. I put each week on paper in front of me and I can see where I want my energy to go. I color that red. I give myself 2 more “events.” But as the spoon theory teaches; you may not have enough spoons/energy for those plans. 5. Talk through frustration fatigue with a friend or counselor. Fatigue is probably the symptom most here have shared a lot. Hope this helps.

Djlr profile image
Djlr in reply to MrsMarigold

SPOON THEORY - great example of limiting excessive activities to accomplish what is more (or most) important to us.

health.clevelandclinic.org/...

butyoudontlooksick.com/arti...

Djlr profile image
Djlr in reply to Djlr

Also- SARA GORMAN’s Book:

Despite Lupus: Living Well with a Chronic Illness

(GREAT ADVISE from Lupus Thrivor)

(Available on Amazon)

despitelupus.blogspot.com/?m=1

pillfold.com/collections/bo...

ijeasike profile image
ijeasike in reply to MrsMarigold

Brilliant, thank you for sharing your technique. I also have the policy of stopping when my body says stop. I can only work once a week that's all I can do. I resumed swimming because I went back to university and noticed I was always seating down. My course work is also tasking, because I can only work at a slow pace and I am happy with that. So I started swimming once or twice a week for 30mins. My weight is an issue I don't burn fat as I used to. But I am on that phase of accepting my weight and living with it. Thank you for the tips

MrsMarigold profile image
MrsMarigold in reply to ijeasike

Yes. Weight becomes an issue for so many of us. The meds and not being able to counter it properly with enough cardio. I am still coming to peace with it. I have 3 sizes in my closet! I think if we make an effort to eat very healthy food and limit carbs it is what we can do. But I want to try to inspire you to do this: with every household task find a ‘movement’ of resistance. Stirring a recipe for dinner? Lean in. Lean out. Repeat several times and do other arm. Every time you go through a doorway in your house/apt….put your arms in the air and stretch as far as you can. Do you need to change a lightbulb? Or another less silly task? Do it with one knee held up as far as you can lift. Do it for a month and your balance and tone improves. It takes courage to live in the slow lane!

ijeasike profile image
ijeasike in reply to MrsMarigold

Nice! Thanks

Ophelia1 profile image
Ophelia1 in reply to ijeasike

Hi IJeaskike - I have a diagnosis of lupus and am currently taking methotrexate. Like you I struggle a great deal with fatigue. Sadly, I don't have a cure for that. if I did, I'd be a zillionaire, 😀. Like you and many others on this forum I have begun to struggle with my weight since my diagnosis. I gained three stone between 2018 and 2021. In January this year I started a couch to 5 k programme, using the treadmill at my local gym - before lupus I used to run every day, so doing a couch to 5 k felt a bit sad, but it worked. I began to lose weight after a couple of weeks. In May I decided that I needed to do something aerobic every day, so now on the days when I do not go to the gym to job I do a youtube step class at home, which for me is brilliant. I bought a step on Amazon. The class I do is run by an American woman called Jenny Ford. I follow her 'seven summits' series and have been doing it since May. There are about 48 seven summit classes on youtube. They are only 35 minutes long, but they are good. I've lost more than a stone and a half since January. I still feel tired, but I feel thinner and that's good. I can recommend. All the best.

Boeingbabe profile image
Boeingbabe

Low dose naltrexone ?

Djlr profile image
Djlr

When your BODY needs REST - It means Business.

Lupus is like living with constant Flu - You REST to recover with the FLU, so if we don’t REST When our Body “cries” out for REST, we can pay dearly with more serious cytokine storms throughout various organs of the body.

We have a NEW NORMAL, it takes time to adjust. Plan REST TIMES (days) “before” big events or extra work or VACATIONS, then you should have Energy for the event, family gathering, work, vacation, etc. and afterwards plan a day or two of rest just to get back to a normal routine.

Living with Lupus, I have learned that rest is my greatest friend plus staying OUT OF THE SUN & lowering Stress from outside influences.

The more I take care of my body, then I have less problems with pleurisy, joint excessive pain, skin rashes, FATIGUE, hair loss, gastrointestinal issues, muscle weakness, etc.

IF we don’t LISTEN, our body has a way of slowing us way down.

So learning Preparation in RESTING & SCHEDULING helps us live more normal throughout the day or week.

ijeasike profile image
ijeasike in reply to Djlr

Very true xx

Poshcards profile image
Poshcards

hi, I have had this for over 30 years now with my Lupus etc, and I have learned that you can only go with what your body wants, and you need, I fall asleep at the touch of a button, everyday, I can't beat it so I join it as they say xx

Lucylou72 profile image
Lucylou72

The exhaustion can feel like you have lead weights pulling you down, I have sle and ss. I agree with the list, even if one of the tasks is to just take the rubbish bag outside to the bin it's accomplished with a tick because let's face it that's exhausting in itself on really bad days. Learning to be kind to yourself is really important, it took me a while but I'm gradually feeling more grateful at being able to do the small things that I can manage instead of worrying about the things I would of liked to have done.

ijeasike profile image
ijeasike in reply to Lucylou72

Very true xx

Djlr profile image
Djlr in reply to Lucylou72

Great analysis of living or “thriving in Spite” of Lupus 💜

Learning your limitations and making time for YOURSELF 😊

Paprika60 profile image
Paprika60

I used to feel bad about not being able to do things due to fatigue. And I cannot take a nap (part of sleep hygiene). So I just rest in bed in a quiet state of mind doing some deep breathing. But feeling less bad about not having the strength or feeling so tired has helped very much. It has taken time and patience but I am gaining a little more strength. I think it is by not asking myself too much. I have completely stopped comparing now to what I used to be. Acceptance I suppose is a huge thing. Please be kind to yourself and treat your body almost as you might with a baby. Lots of care and love. And slowly things will become better. And lots of good nutritious food including high protein and carb which all help with having more energy. I eat nuts and seeds whenever I want to snack along with fruit. Stopping your gym membership is not a bad thing. You are moving onto doing something else and at least you won't feel bad that you are wasting your membership and failing. Instead have a good walk daily. Feeling good about yourself is the first step. Hope you feel better soon. X

ijeasike profile image
ijeasike in reply to Paprika60

Last year I was almost caught in the Web of comparing myself with other people. I had course mates who said they did 3 jobs. I just told myself the truth, I can't function with any job in addition to studying. Thank u xx

Paprika60 profile image
Paprika60

Focusing on study alone is enough!! Well done you! Doing one thing well at a time is far more rewarding and worthwhile in the long run. Too many people try to do too much with less than good results and that's why people make mistakes and jobs don't get done properly.

Stay well!! X

ijeasike profile image
ijeasike in reply to Paprika60

Thank you xx

LuzyCLL profile image
LuzyCLL

I am also EXTREMELY fatigued from health issues (chronic leukemia and some autoimmune problem). My new Rheumatologist prescribed 1 MG Folic Acid 2/day. As you, I exercise, do yoga, breathing exercises, don't nap... and have tried everything, but always feel I need to lie down. The last two weeks I have been busy some of the time, it feels good.

ijeasike profile image
ijeasike

Thanks for sharing

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