Chronic fatigue

[Retire3603]

I was diagnosed with anca vasculitis MPA in May of 2017 it had a terrible effect on my eyes and my kidneys before I realized what I had. It now seems to be in remission(not getting any worse) but the fatigue is terrible. Exercise seems to make it even worse. Grocery shopping has become a real chore, just walking through the store makes me so tired and nauseous. Does this feeling ever go away. Also the joint pain is sometimes unbearable. I would like to hear from other folks experiencing symptoms like this, and what they are doing about it.

[AmyS1]

Are you completely certain that you are in remission. It might be that you have low level disease making you feel ill. Speak to your specialist vasculitis nurse.

[AmyS1 in reply to AmyS1]

Nb kidney disease can make you feel unwell ensure that you are being treated at a specialist vasculitis centre and ask for a review.

[Webbyj]

This sounds like me! I was also diagnosed with MPA in May 17 and am also in remission (no anca). However I also get tired and suffer terribly with my eyes which is being ignored by hospital. I suffer with fatigue too. If you don’t mind me asking what treatment or advise was given for your eyes and what were the issues ? What hasn’t helped was suffering a heart attack 6 weeks ago!!

[Mooka]

I agree with amyS1 it sounds like you still have grumbling symptoms. I remember the supermarket well. I used to want to crawl up in a ball in any convenient corner. I started taking my husband with me or doing online shopping. You also need to pace yourself during the day. Think of it as you only have so much energy to spend and then prioritise what you want to spend it on. You should discuss this with your Vasculitis team as a change of medication may help.

[2534]

Hallo. I have mpa and 'burning feet syndrome'. I also have sero-negative rheumatoid arthritis. I do not have identifiable anca but do qualify for Rituximab.

My experience is not identical to yours but when it started I had years of being pushed round from pillar to post trying to get a diagnosis. My symptons were all over the place and pain and tiredness shot up. I learned to immediately respond to tiredness by lying down, to fit in with where my body was at. I was put through a series of drugs including prednisolone and Cyclophosphamide which triggered atrial fibrillation. I found this period exhausting and it went on around six years until a good neurologist at the Royal National Hospital for Neurology.... referred me to Professor David Jayne at Addenbrookes. He put me on Rituximab and slowly, slowly things stabilised. I would say pain and tiredness are both 10-15% less than before but it is an important 10/15% improvement in that it makes my life more manageable. The symptoms are not ricocheting all over the place now but are more even and predictable. Through wearing a Reveal monitor for the atrial fibrillation it was discovered that my heart was stopping for 4/5 seconds in the night so I now have a pacemaker, and the tiredness is much less marked.

So for me getting a proper diagnosis (of everything that is going on) and seeing excellent practitioners was all. I have read in Health Unlocked that the experience of unpredictable symptoms, difficulty finding an accurate diagnosis, pain and tiredness at the beginning giving way to a more manageable, even experience is not uncommon.

I wish you all the best. it sounds difficult and i hope you get the best treatment for your particular package of symptoms

Take care ajh

[Retire3603 in reply to 2534]

Thank you

[Oldharry]

Hello. I can well feel for you. I was diagnosed with ANCA Vasculitus about 18 months ago. I had very high C-reactive protein over over 170 ish. Norm is between 0-10. I must admit I've been through hell and back. I started with night sweats which moved on to 4" wide red rings around my legs. Then intense hot shooting pains down both legs and like electric shocks in my feet. Many times I've cried with the intense pain. I went through many tests but strangely /i found the most helpful pain killer to be an over the counter fizzy /codien and /paracetomol. Unfortunately I went from bad to worse. Since I was Asthmatic from birth it started to affect my breathing ( I also developed Bronchiectosis 10 years earlier following a collapsed lung ( twice) so my chest was bad. I had been given Prednisolone ( for over 25 years in younger days.) 60 mgs Of Pred followed by head biopsy( clear so dropped to 45 mgs day) I also had Mexotrixite? for 11 weeks -rubbish.

A year ago I was given my first Rituximab infusion and within days I had Shingles followed by Chest infection after Chest infection, Urinary tract infection, eye infection etc 10 days in local Hospital, 14 nights Royal Brompton ( God bless them) After they cleared my Chest infection I had my second Rituximab in June. If this isn't complicated enough I Also got blood clots in my left lung. ( Thinning Skin on backside, Osteoporosis Years of Prednisolone,) Terrible sleep patterns,, Indegestion, Constipation, Headaches, and now Anaemia. Oh and not forget blood pressure, and suspected Bowl cancer( cleared).

I've had around 6 CT scans, 7 Ultrasounds, A radioactive CT scan, A @ Polo mint Type Scan, Biopsies, Sygmoidoscopy, Needles shoved in my legs, 5 Iron infusions, Zelondronic Acid and at one point about 75 tablets a week.

By rights it should have been 'Goodnight Vienna' but I've had to scrap with my health all my life so I try to find ways round problems.

About 12 years ago I successfully fought off a colonised Pseudomonas after being sent home from 10 days treatment in Hospital with little hope of surviving it.

So I am now in remission. My C- reative protein is below 10, My chest is a lot better thanks to RBHosp, I have slowly cut my Prednisolone down to 5.1/2 mg. I have one very skinny funny shaped leg and one very swollen leg and need more tests. My eyes are sometimes blurry and I had 3 eyetests but Opticians know less than Doctors and it's my experience that most Doctors know very little about Vasculitus. I do exercise on a bike and walk with crutches as many steps as poss a every day. I do get Fatigue but nowhere as bad as you.

I need to have a sleep during the day. Every day is different -somedays I feel good and other days I feel rough .

I have a number of self help procedures that I do. They might work for others but I can't obviously guarantee they will: Try to eat healthily.( Greens, fruit, cut down fats and frys etc. Look for high Vit C foods, Oranges Red Peppers etc etc. Drink a lot of fluids-not too much tea/ Coffee. Plenty of water. Get your mind into a positive one. You brain is your most powerful weapon, Where you can make sure you seek an expert in Vasculitus to get best help . Try to gently build up your excercise gently at first. Don't give in- keep saying to your self 'I'm going to beat this !' One final thing which some may not wish to follow but what I believe has probably helped me the most. Pray for help. My local church has prayed for me every Sunday for 18 months.

Incidentally I'm over 70 and I've been out busking for Charity twice lately. Very best wishes and I hope you can soon recover.

[GPASufferer in reply to Oldharry]

Thank you. You gave a boost when I very much needed one!

[Retire3603]

Thank you

[MelBeck]

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[MelBeck]

I really do sympathize with you as Vasculitis can be a vile, unrelenting disease with many symptoms,notably chronic fatigue being one of them, which many people appear to experience and complain of. I am a 72 year old male in the UK diagnosed in 2015 with PACNS (Cerebral vasculitis). Brain biopsy proven after suffering a stroke, headaches, memory loss, high blood pressure, painful joints and generally feeling very unwell for a number of years. Initially I had Chemotherapy (Cyclophosphamide) and high doses of steroid (Prednisolone) and following that Methotrexate which I am stilll on and gradually reducing, as I am thought to be in remission. My excellent and very caring Neurologist thinks the medication could be adding to the Chronic fatigue and tiredness and that's why I am gradually reducing it. Before being diagnosed with this dreadful condition, I was a strong, physical and active person, but unfortunately now, I am alot weaker and unable to do the things I use to be able to do.Just a quick comment on eyes, people with vasculitis often mention issues with these. Luckily my eyes and eyesight remain pretty good, but I do experience considerable problems with dry, sore ,runny eyes which give me a lot of discomfort. I have seen Ophthalmologist consultants, but have never had it confirmed that the eye condition is caused or associated with the vasculitis. I am subsequently prescribed Optive Plus or Viscotears eye drops to address the issue. Unfortunately Vasculitis is so rare, cerebral vasculitis even more so and therefore, there does not seem a lot of information,knowledge or expertise available. Apparently some doctors particularly GP/s may never see a case in their career. I hope this information is of some help and wish you all the very best,try and remain positive.

[Retire3603]

I also received cyclophosphamide and steroids for six months than on azothioprene for two years. I have supposedly been in remission since May of 2019 no drugs other than for extremely high blood pressure. I have stage 4 chronic kidney disease, an optical stroke which damaged my optic nerve in left eye and a crvo in my right eye which required injections in the eyeball for four months to stop the leakage in the veins, causing terrible vision. Everything seems stable not getting any worse. But the fatigue has really gotten me down. I am 60 years old and was a miner for 35 years, always outside and very active. Now I can't even mow my lawn. Does it ever go away and get better or is the damage already done.