Tired of fatigue. : I was diagnosed with LVV... - Vasculitis UK

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Tired of fatigue.

Elbowpiece profile image
Elbowpiece

I was diagnosed with LVV in December 2020 and l am still trying to understand what l have got. One thing l do have is fatigue, but what is responsible for it, pred., Methotrexate or vasculitis. When l asked my consultant about the fatigue he simply said "we haven't found a cure for. sleep". Any advice better than that.

14 Replies

You might find a lot of help on the PMRGCAuk forum - we have a lot of patients with GCA/LVV/PMR and there is a great deal of overlap between the 3 degrees of the illness.

All three components can lead to fatigue - it is an inherent part of autoimmune disease in general, in some people pred leads to fatigue, in others they develop wings and think they can do everything - until they do it and it was too much, and methotrexate usually causes fatigue for the first couple of days after the weekly dose for most people but when I tried it I lasted a month before saying no more - the fatigue lifted about lunchtime of the day the next dose was due! And I simply could not function - so I said no.

To be honest, many doctors do not "get" the fatigue bit, especially in patients on pred because they think once you are on pred that is it and you are back to normal. They will tell you EVERYONE feels fantastic on pred - no they don't!

This post I compiled some years ago includes some useful links for understanding it. The 15 sorts of fatigue is particularly pertinent - because each part of LVV may cause a different aspect of fatigue - and the articles explaining pacing are very good. That is the only approach: learn your limits and don't push them. Don't try to fight because that wastes precious energy. It does work and you can have a better quality of life with care.

healthunlocked.com/pmrgcauk......

pleides profile image
pleides in reply to PMRpro

That's interesting what you said about your response to methotrexate.

PMRpro profile image
PMRpro in reply to pleides

I'm not the only one!

GPASufferer profile image
GPASufferer in reply to PMRpro

Thank you for posting! Yes, the doctors don’t get the tired thing, and not everyone feels great on prednisone - you’ve said it all! You have helped me more than you know by validating my issues. It’s hard not to feel like I’m just a hypochondriac.

Tbrz profile image
Tbrz in reply to GPASufferer

I agree it is hard to think you are not been a hypochondriac. I have just had a bad week with fatigue and it has really upset me as I feel such a failure. It is a symptom I really struggle with as it is so debilitating and limits my life; I really feel like I’m banging my head against a brick walls as I just can’t seem to have any pattern, I’ve just read the 15 types of fatigue (thank you for this PMRpro for this) and it has helped me understand what I’m feeling a bit more as like many others when you mention this to doctors it is disregarded/ ignored, which just serves to make us feel like we are imagining it. None of us want to have this disease as it has robbed us all, to different degrees, our former lives and we all battle to not feel like we do; however, this disease has different ideas and reminds us it is still there lurking in the shadows . I was just thankful for this site as I thought I was going mad as could not understand what I was feeling. I do think we need more understanding from our medical professionals. Take care 😊

John_Mills profile image
John_MillsAdministrator

Versus Arthritis have an excellent leaflet discussing fatigue and how you can manage fatigue. versusarthritis.org/about-a... is ongoing at the moment regarding Fatigue and Vasculitis at Birmingham QE.

Fatigue is a symptom in its own right which certainly needs further research.

Around 90% of patients diagnosed with vasculitis sadly suffer with fatigue.

May7 profile image
May7 in reply to John_Mills

Thanks for this link, but it leads to Page not found.

John_Mills profile image
John_MillsAdministrator in reply to May7

It works for me ...I will try again versusarthritis.org/about-a...

You have to follow the redirect link after you have clicked on the link

May7 profile image
May7 in reply to John_Mills

That works, thank you!

Sadly I think the only people who truly understand fatigue are the people who have suffered from it and that excludes most doctors. Sleep is not the only answer. Personally I used the spoon theory to explain to my family. Some got it others didn’t. It helped me to prioritise my day and to say I’d had enough when I said I’d run out of spoons. When you are on a lot of meds it’s difficult to differentiate what is causing your symptoms between the disease and the meds. Keep mentioning it to your doctors as a change in meds may help. It does improve as you get the vasculitis under control.

Hi , you are quite early on in this awful journey so be kind to yourself and rest plenty. In my own experience of LVV the fatigue was horrendous but what I did discover was methotrexate made it worse for me. When I got well enough to actually look back over how the illness had developed I realised that the fatigue/ lack of mobility increased the further I went with the methotrexate. I can see from the step counter app on my phone that initially after diagnosis I was still able to go for a walk, it was only when I had a break from methotrexate for a dental infection I started to feel stronger. I went back on it as instructed by rheumatology consultant and 3 weeks/ doses later I could hardly get about again. This is only my experience, are you being considered for tocilizumab? This was the turning point for me and whilst I wouldn’t say I’m fighting fit I’m certainly much improved on last year

I was diagnosed with anca vasculitis MPA 5/1/17. I've been in remission since 5/19. And I am on no medication, fatigue and joint pain is still a major issue for me. Will this ever go away?

Hello Elbowpiece,

I understand you more than you think. I was diagnosed with vasculitis 23 years ago, and sadly I can say I started to experience that terrible fatigue even years before I was diagnosed. I noted certain medications cause more or less fatigue than others, but independently of my treatment, or the dose, the fatigue have been present all this years. There are days I can't make a step without feeling I will faint, other days I can´t even think clearly. Fatigue have been the worst symptom in my case because it limitates me in every way, I can be even more functional with pain, and pain in most cases can be treated, you have many options for that, but a body is useless without energy and, at least for vasculitis, there is no cure for fatigue, I think is an inevitable part of the illness. This condition is poorly understood by friends, family or physicians, sometimes they simply can't belive you how debilitating can be and how affects your everyday life, for exemple, to take a bath for me in a difficult-fatigue-day, is a great achievment. Sorry if I'm breaking your heart, my intention is that you don't feel alone or misunderstood, here we are other people that feel just like you. Rest when you have the chance and don't force yourself, be kind with yourself, because you are the only person that can messure your needs.

Best wishes.

🙂😉

Yes you understand, l wish you didn't then you would not be going through it. If l can achieve one thing a day I'm pleased. Life is so unstructured, you can't make plans. We had hopes of moving into a bungalow but it fell through and l was relieved because l had no idea where l was going to find the energy to move. You are right about doctors. I had got a sore throat and he asked if l could pop down so he could see it. At one time no problem, now a major time consuming process.

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