Chronic crippling fatigue : Hi everyone Chronic... - LUPUS UK


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Chronic crippling fatigue

19 Replies

Hi everyone

Chronic fatigue- any techniques to help combat this ? Since I had GBS in January it’s still an issue. Waiting for 1st Rheumatology appointment- all delayed with covid of course. so no other diagnosis at present but plenty symptoms.

He fatigue is really affecting my work life 😥 I am trying to fight it but it’s crippling at times

Thank you 😊

19 Replies
PMRpro profile image

Fatigue is an inherent part of almost all autoimmune disease and unfortunately there is no pill to sort it, It is all down to knowing your limits and learning to pace and rest appropriately. Fighting just doesn't work, you end up crippled and collapsed. It may help to anticipate the collapse and rest before you get there.

There is a collection of links here that may help you:

I think it is on the lupus forum somewhere but this was to hand.

in reply to PMRpro

Thank you so much I’ll have a read of the links. I’m in a phased work return I’m a nurse so it’s so hard when it strikes

PMRpro profile image
PMRpro in reply to

I suspect it will be hard - I worked in the NHS, one daughter is a nurse, so I do know what you are facing. All the best

in reply to PMRpro

Absolutely- thank you , links are useful

Oshgosh profile image

PMRpu has said everything I was going to say.

I have SLE,RA, Scarred Lungs, caused by the auto immune ,they think.

Also have long-standing asthma,Sjogrens IBS.

Pacing and rest are the only way to cope with the fatigue.

I have tried fighting it,I just end up wipes out for means that I can’t do everything I want to,but have had to come to terms with it.

It is my grandsons 18 th birthday next month.

I will have to plan for it,so that I can manage the evening. ( Covid allowing.)

I’m sorry I can’t give you more encouraging advice.

I worked till I was 67,

I didn’t get m diagnosis until I finished work.

Looking back I have paced myself for a long time,without realising it. You have to be kind to yourself


in reply to Oshgosh

Thank you - just off for a nap as I can’t do anything right now. It’s just nice to hear understanding from you all. I’ve had IBS too for most of my life but it’s worse now.

Take care x

Oshgosh profile image
Oshgosh in reply to

Touching wood IBS has settled down,I think the Myclophenate May have helped also going for a lie down ,otherwise am asleep on settee by 6 pm.

I’ve managed to plant some seed.i gs,but it’s too hot to stay out,even with cream on.look after yourself. Rest is really the key.

in reply to Oshgosh

I had 3 hours sleep ! Hope you got rest too . Yep I’ll take the rest advice 👍🏻

Oshgosh profile image
Oshgosh in reply to

Glad you got some sleep.

I only got an hour,buti read my book for a bit.hope you’re managing ok.x

in reply to Oshgosh

Better than earlier, still foggy but I’ll take that xx

I have M,E or CFS as it’s now called. I paid privately with a very good alternative practitioner and was told most foods were making me very ill. I had Candida and thrush 24/7. I was bedridden and was put on a very strict diet by a alternative practitioner I stuck with it and recovered but I will quickly relapse of i don’t stick to the diet. I am on a no sugar, dairy, wheat diet. I only drink bottled water and avoid anything in a tin or packet and everything I eat has to be cooked from scratch I take dozens of supplements and I get well. Also have you been tested for B12. A new dr has given me almost 12 shots over 2 weeks and am finally feeling well. My blood work was fine and after 9 years was told that the blood work is not always accurate hence the decision to test for B12. I also have malabsorption issues. Make a full list of every symptoms you are having and speak to your drs if you get nowhere pick the best dr at the surgery and write to them. Let us all know how you get on. Cheers. Elena. xx

in reply to

Elena thank you - I have vit D deficiency on supplements. B12 was ok but may fluctuate? Diet I need some solid advice I’m sure will help. I worked 5 hours today , a better day.

I’m keeping diary of symptoms for when see rheumatologist/ eventually!

Take care x

Jmiller623 profile image

Chronic fatigue is rough. B12 and vitamin D can help if they are low so have them checked. Also make sure they check your thyroid.

Sorry you had GBS. That’s scary. You probably will have some element of POTS/autonomic dysfunction after GBS as it affects the nerves in your legs and can cause blood pooling in lower extremities. Does your heart go wild with little activity? If so, record your heart rate at rest and when up and about. Take this to your doctor.

Ask your provider about some things that may help with fatigue. I used to take adderall, which has a bad reputation but this gave me 10 years of a good quality life without fatigue. I cannot take it anymore because it worsens my Raynauds, but I think it’s underutilized in the autoimmune population. It is approved for the treatment of chronic fatigue. I now take Wellbutrin which is like adderall light and doesn’t exacerbate Raynauds. Antidepressants can sometimes help with fatigue because they modulate neuroreceptors and should be called neuro modulators. Exercise also helps. It’s the one thing that keeps me going. If I don’t exercise, my day goes caput.

Hopefully rheumatology can pinpoint exactly what’s going on and if your troubles are due to a connective tissue disease. It also might be a good idea to find a good neuroimmunologist if you haven’t already.

Hope this helps if even a little. Hang in there. ❤️ xx

PS... I saw you are a nurse. I am an internal medicine physician but am no longer working. 🙌 HCP!!! God bless your soul.

in reply to Jmiller623

Thank you 😊 that makes sense. Yes do get heart races when doing nothing and still shock type nerve pains to feet. Fingers get numb. My area is tissue viability!

Going to see GP until see rheumatologist 👍🏻

Jmiller623 profile image
Jmiller623 in reply to

Sounds like you may have an element of autonomic neuropathy which will cause your heart to race for no good reason. Nerve pain is also probably small fiber neuropathy. Autonomic neuropathy can take the wind out of your sails. Your heart racing can make you feel tired and breathless. Something as simple as stairs can make you feel like you’ve run a marathon. Let your neurologist know about this. They can test you for small fiber and autonomic neuropathy. Something to slow your heart until your nerves recover might help so I’d ask GP for referral to cardiology if necessary.

Tissue viability.... like extreme wound care? You ever work with burn patients?

Hope your rheumatology appt sheds more light on things. ❤️

in reply to Jmiller623

Thank you really helpful, I’m so breathless a lot which I never was before GBS. Hmmm 🤔

Yes wound care, all types mainly leg ulcers pressure ulcers but burns yes

in reply to Jmiller623

I know symptoms can be related to other conditions but BP raised, headaches, sweating unbelievable ( May be age?) bloated on v small amount etc etc interesting

Jmiller623 profile image
Jmiller623 in reply to

Could be age but maybe not. Autonomic system controls bowel movement, urination, BP and heart rate. Many with autonomic dysfunction have sympathetic overdrive symptoms. High BP causes headaches, heart rate goes up, bowels stop moving (making you bloated) and you feel like you have to pee all the time because it controls your pee sphincters. Loss of parasympathetic tone can also do this. Sometimes dysfunction will cause full body flushing and/or swelling. These are all also symptoms of hyperthyroidism/hypothyroidism among many other things so these must be ruled out as well. But given your history, I’d ask rheum about possible autonomic dysfunction. This happens in some CTDs esp Sjogrens.

Autonomic dysfunction is also associated with mast cell activation. Mast cells sit at ends of nerves. When they get inflamed, they can cause nerve dysfunction. This is why some ppl find diet helpful because when they react to foods, their nerve problems flare up. Many find relief with antihistamines and if they help, it’s usually diagnostic of an allergy or possible MCAS esp in setting of nerve problems and autoimmune illness.

I could talk about this stuff all day if you let me. Let me know if you’d like some resources on autonomic dysfunction and MCAS.

in reply to Jmiller623

Thank you so helpful and makes sense to me as a HCP

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