Your feedback is needed - Fatigue in Vasculitis

[Suzym2u]

Please follow this link to the Vasculitis UK website for more details 😊

Fab-V Project vasculitis.org.uk/news/fab-...

[amms43]

I am diagnosed with MPA and leukocytoclastic vasculitis and am treated by Professor Jayne at Addenbrookes. I am waiting for appointments for two more doses of Rituximab. I have been under treatment since 2009. Currently my main problems are joint and muscle pain and weakness and I find it impossible to know whether the fatigue is the chicken or the egg! The first lines of the summary in the leaflet describe exactly where the fatigue leaves me. I have almost given up on my normal walking exercise as it leaves me feeling so ill and exhausted but of course I recognise that the less I do. the less I am able to do. I have no guidance or help so this research is of great interest to me.

[michichgo in reply to amms43]

2013 MPA diagnosis with kidney involvement at age 48, too many other health issues to mention. I'd estimate I feel good and healthy, with limited activity, about 25% of the time. All the rest is fatigue and pain; pain and fatigue. Docs keep trying but it is difficult to remain optimistic of leading any sort of enjoyable life. And why do I feel so darn unwell, so much of the time...

[Christophene47 in reply to michichgo]

I am sorry to say that optimism has left me entirely now. I am sure I am clinically depressed. Where else can one be with a life that is not a life, but rather fatigue and pain with no let up; nothing to look forward to. My life is doctor's appointments which have become more and more meaningless. I am entering my third and a half year. Mostly, I have become reclusive and don't want to hear or speak to anyone. A bad dream without ending. I hope michichgo that your mood state and life is better than mine.

Best wishes to you.

[Vo321 in reply to Christophene47]

These sentiments are all too familiar with those of us enduring chronic illnesses. Does it ever get better? ... who knows! I'm 23 years old and the majority of the time I feel anything but youthful. Sometimes it may be the medications prescribed or the illness itself that induces depression. This forum brings me comfort in hearing other people who understand exactly how I feel. Do not give up on yourself. 🙏

[Hadley1234 in reply to Vo321]

I agree with you all....I have 3 vasculitis deseases, and have only been on steroids since January this year, I couldnot tolerate Methotrexate, and after 7 injections of this new drug, have now had a reaction to that......the worse thing is the exhaustion, the pain comes and goes, I take turmeric which I find very good, there doesn't seem to be much knowledge on this desease take care hope everyone feels better soon .

[Gjw62 in reply to Christophene47]

Hi Christophene don't give up I'm egpa anca + got on to duluxatene for depression which also helps with nerve pain pregablin which helps with nerve pain and paracetamol 500ml on bad days still get pain but it sometimes takes the edge off hope this helps

[Kentish_Man]

I was diagnosed with PAN in/around March 2007, I also now have a range of other ailments. This results in my having to take over 20,000 pills a year. I guess that my main problem is that I still have not accepted the fact that I have PAN and therefore try to do things that I either should not do or cannot do. I feel to give in to it is to give up, but unfortunately with that attitude I quite often suffer the consequence of my actions.

Having dental treatment or surgery also knocks me back. I had a knee replacement in January and was told I would be in hospital for 2 days afterwards. Wrong. I was there for 2 weeks and I am still in a flare of my PAN. The physio has given up on me as she says that with the PAN flare there is nothing she can really do to help me as it will re ignite the flare.

I have no stamina, cannot walk far or stand for too long. Now my bed or sofa are my best friends. When I feel up to it I do go out in the car, but then cannot venture far after I have parked up. I have a Blue Badge, but even so the number of disabled spaces seems to be on the decrease in my area. Then there are the able bodied people who use other peoples badges in order to park for free.

A friend said that 'Old age does not come alone' ! How very true, yet we are meant to 'enjoy' retirement !!

[ReidyWG]

Roller coaster fatigue, I try to exercise to 'use it or lose it' but despite pushing through the barriers I come down with a bump. I'm currently involved in walking football which is becoming manageable.

Hospital answer is always "no active signs of disease, see you in 3 months". That is beginning to annoy me.

[Hidden in reply to ReidyWG]

Quite agree you try and exercise but if you exercise one day the next day you feel as if you have done marathon. Nobody seems to understand how this feels. I have GCA