any tips for everyday intense fatigue??!

[nada28]

Hello everyone. I was just wondering if anyone had some advice on how to combat the everyday tiredness. Some days I am relatively okay but some (like today) I have to have 3 naps just to get by. I cant remember the last time I went a day without at least one nap. I am a med student as well so it doesnt really help with my studies. Was just hoping for some tips on how to feel more alive during the day!! Thank you xxx

[Turquoise-1]

Hiya nada28,

I find fatigue so frustrating especially when I’ve got things to do, so you have my empathy.

~ On a day to day basis I keep a regular routine of going to bed early, (9 - 9.30pm) & get up around 7am. I prefer to avoid napping during the day & keep myself busy/occupied even if I have to go at a slower pace. I try hard to push past the desire to succumb & sit doing nothing as this aggravates the spinal problems I suffer with. I do try & pace myself to conserve energy for the ‘bigger’ things I need to do….it’s a never ending juggle & balancing act.

~ I’ve learned to say, “No” to others & anything I know I’ve not got the energy for; Being strict with myself & having my own set of boundaries is advantageous to me in the long run.

~ I take Feroglobin Liquid Plus (contains Vit D, Ginseng & Co-Q10), this is the more expensive one, there is a cheaper version but I don’t find it as effective. Or I take Metatone Tonic. Either of them seem to help with my fatigue, although I am not anaemic or suffer with low iron!

~ I eat a nutritious, well balanced & healthy diet with a variety of foods which I enjoy as I dislike ‘junk’ foods. I’m not a perfect angel though & do have occasional indulgences!

~ Sometimes during a flare & despite my best efforts, the fatigue completely knocks me off my feet & I sleep for days on end ….. It’s completely out of my control & as much as I hate it, I just have to be patient and wait for it to pass. I find it hard to accept, get cross, annoyed & angry with myself as I’m a ‘doer’ who enjoys fitness & exercise plus I’m very house proud, have a dog who needs walking & a garden which needs tending!

I was diagnosed as having M. E. in my early twenties whilst working as a Dental Nurse, I went on to become a Paramedic but am now retired.

Aged 16 I had long, thick, wavy hair which started to fall out as a result of having Shingles brought on by the stress of doing GCSEs. My hairdresser Mum cut it all off & I’ve had short hair ever since, (I’m almost 58 now).

Good luck with your studies & managing your symptoms 🙃

[nada28 in reply to Turquoise-1]

Hiya! Thank you so much for your reply I really appreciate it. This is really good advice as well, I think setting boundaries is definitely something I need to do in all aspects of my life. I have heard of Ginseng, do you feel it helps?? I have also lost a lot of hair so your situation seems similar to mine. Thanks again and best wishes to you too xx

[Turquoise-1 in reply to nada28]

I do find that the Feroglobin Plus (which contains Ginseng) does help with my fatigue; I have never tried taking just Ginseng but have read about its health benefits. Metatone is helpful too as is Floradix; I tend to alternate them & avoid taking any of them permanently, have breaks from them & only take when I’m really struggling. They are effective for me and know when I need a ‘course’ of them

Thanks for your nice reply x

[dg70]

The only way I keep my symptoms manageable is a long rest and sleep at lunch time for two to three hours. I go to bed at 10 and get up slowly which starts at 8 and goes on until 9 when I'm ready to do things. Everyone is different I'm 52 and been doing this for 15 years now. I believe my symptoms of SLE and Sjogrens have not progressed very fast because of resting when needed. If I try to go out all day then I pay for it with headaches and even more fatigue for the next couple of days. I say no as well to a lot of things that require my brain to think to much like going out late or talking to groups of people for more than an hour or two. Physical exercise doesn't seem to make me more tired its brain work for me or just being awake and moving for several hours when my body just shuts me down for a rest. If you need to rest try and take it as it's your body's way of saying stop, I can't cope, I need to fight your disease for a bit and keep you going for the rest of the day. My neurologist told me sometimes your body just needs to breath, keep your heart pumping and organs going amidst the autoimmune or illness for that fact, so your brain shuts down all unnecessary functions for a period of time determined by your body not you. Makes sense. No short cuts when it comes to rest. Many older ones have had to give up work full time or altogether depending on how bad the fatigue is. All I know is once fatigue started its never changed for me but it's not getting worse yet. I am lucky I have my own business and support from my husband so my time is more flexible than others. Your tired because your body is fighting itself all the time. Take care and I hope you find a pattern of work/rest that works for you.

[nada28 in reply to dg70]

hi dg70 , thank you so much for your reply. What you’re saying makes a lot of sense I do think I need to listen to my body at the moment and that includes sleeping all the time for the time being. I also understand the thing about physical exercise, a lot of it is the mental side of it so it’s nice to hear there are others that can relate. Thank you again, I hope so too.

[MrsMarigold]

Hello nada28. The best advice in my years of experience is something you are not going to like: when lupus makes you that tired, sleep. The body and mind will not perform well without adequate sleep. How you integrate your studies in between naps may include some mild tea. In my experience supplements that “power” you up / especially the overdone green supplements or fresh green juices and smoothies eventually have the opposite effect and deplete all energy. They stimulate the immune system which is the last thing you need. Our immune system needs rest and real nutritious food. The best calm energizer for me is slow yoga, deep breathing. Best, MrsMarigold

[nada28 in reply to MrsMarigold]

Dear MrsMarigold, thanks for your kind reply I really appreciate it! I definitely need to start things like yoga and low impacts exercise. Also been sleeping so much so thanks for the reassurance that this is normal.

[MrsMarigold]

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