To what extent does "vasculitis fatigue" hav... - Vasculitis UK
To what extent does "vasculitis fatigue" have an impact on your day to day life? (Please leave any appropriate comments)
I'm lucky to be in remission now, and really not impacted at all, but when it was in its prime, I was without energy, napped a lot, and could scarcely walk - very light-headed due to anemia, and who knows what else.
Sounds a lot like how I feel right now. I am weak from the chemo treatments that I had. Plus I have Rhumatoid Arthritis also and osteoarthritis. So this has really taken a toll on my body. I can't stand on my feet very long because I get weak and break out in a sweat. Then I have to go lay down. I'm on 20 mg of prednisone a day and a pain pill for my pain. Trying to get off the pain pill tho. I just pray that the Lord will help me through this healing process. People just don't know what it's like to have to live with this awful Vasculitis. Prayers for you.
Fatigue something that came into my life a month after diagnosis. It is not as bad as it was and I have learned to plan my days and listen to my body.
I was a "machine" before I got ill. Days full and couldn't sit for long. Now I manage to do 6 hours/week volunteer work plus 3-4 hours my private lessons ( plus 2 hours prep). My house is not as tidy and clean as before and my nights out are rare, well planned and never late. But I live a quite normal life again...I am building my stamina up, I think it will help.
If I eat too much sugary things my fatigue is worse.
What kind of Vasculitis do u have zoe69? I have periarthritis nodosa. I also have Rhumatoid and osteoarthritis. The Dr. is checking to see if the Vasculitis is in my sinuses. I pray that it isn't. I'v taken 3 Cyolophosmide Chemo treatments and 2 Rethuxian treatments to put my Vasculitis in remission. The doctor said its in remission but I'm still in a lot of pain and on prednisone and a pain pill. I'm 63 yrs old, I'm to young for this. There's a lot I want to do and I can't do it. How old are u? How long have u had it?
I was originally diagnosed with GPA (Weggeners) but my rheumy thinks it is more possible it is a cross over with EGPA ( Churg Strauss).
I was very fatigued while I had cyclophosphamide infusions and took high dose of preds. Now I am on azathioprine and only 5mg of preds. Had to adapt my life and yes it is a hell of a journey but I am alive and I feel fine most of the days!
Most days I'm Tired and find it hard to motivate myself. I get breathless quite often as well. Before being diagnosed with LVV
With Aortitis and In the Subclavian in January of this year I was extremely active and was full of energy, some days it's a constant battle, because I want so much to be how I used to be, but then I think I'm so lucky to have a very good Rheumatologist who has got me this far.
I find that the support I receive from the so called NHS has diminished to next to nothing. I had a heart attack last September and, apart from all the leaflets tha I was given at the time, I've had one visit last year! Three months ago I received a phone call to tell me I had 'fallen through the cracks in the system', but someone would be in touch. Still waiting.
My last visit for a routine hospital appointment resulted in 'we'll be in touch'!
My local GP has now told me that they are no longer allowed to do my blood tests as they can't get hold of the necessary vials which they require? The only contact I have with then is on-line request for repeat medication, one of which is apparently only available in one month supplies? One other prescription only is continually not available from my Pharmacist?
I live with then sole help of my 72 year old wife and our daughter.
The care element seems to have disappeared from the NHS. Maybe I should make an official complaint?
So sorry you have this too. I hope things go well for you. I have have/had this too.
I have GPA with kidney & lung involvement. My breathing difficulties significantly impact on what I can do or have the attention span to do. Compared with my pre-illness self, whilst I have good intentions, the energy to carry them out isn't there.
Have had to reduce from full time to part time hours. Fatigue not as bad as in initial stages but still limits me on a day to day basis. Would say is the one symptom that impacts on my life more than any of the others. Apart from the horrendous headaches prior to diagnosis (GCA).
Get so exhausted cannot even get up out of bed, sometimes cannot even wash my face, after large steroid infusion 500ml methyl pred I am a lot better for about 10 days, still fatigued but able to get through the day just. Maybe mine is worst because I have just found out, with the help of a second opinion, that I have fibrosis in my lungs, despite being ignored or not even being bothered to give me a CT scan. Yes and I have fallen through the wonderful NHS Cracks too. Over 15 months of suffering badly, my second opinion and CT Scan is terrible, got urgent appointment next week. 15 months of complaining to GP, Consultant etc, etc, CT Scan results very scary, thank god for this new specialist.
I pray they will be able to help you. God Bless you.
Thank you very much. Don't worry god works in mysterious ways. I saw a local Rheumatologist who knew nothing about Vasculitis, he saw how ill I was, sent me for a CT scan, phoned me next day himself urgently. It just took one caring person and now I am seeing him Tuesday. He wants to explain everything what is wrong, he has already sent out urgent letters to gastro consultants and other specialists. Amazing. We all just to fight hard, make sure we are heard. Thank you.
I find that fatigue is the most debilitating symptom of my MPA. I was diagnosed about 10 years ago and had severe kidney damage, along with damage to heart and lungs I have been fortunate to be in 'remission' for most of the time. though have had the occasional relapse. Stamina has been slowly but surely decreasing. I have recently had a knee replacement and have found that fatigue has worsened as a result of surgery - to the extent that the most simple exertion causes breathlessness and dizziness.
I've spent over 5 weeks in hospital this year. I can not seem to get back on my feet, weak, no balance, no energy ...totally depleted. So many problems all hitting at the same time.
Would agree that the fatigue is my worst symptom. I'm limited to an hour's activity at most per day, so can either shower or make a telephone call or put some washing in the machine etc. If I need to do something that takes longer than an hour, such as going to the doc's or the hospital, I need to rest the day before and two days after, otherwise my muscles, brain function and vision deteriorate so badly that I can't even read a book. Thank goodness I now have a much needed home help who comes in once a week to do the washing up and shopping, otherwise I wouldn't be able to cope.
I find my fatigue comes and goes. I have reduced my hours at work to 28 a week and find I feel tired by the end of the week. I have to pace myself with social activities - can't play hard & work hard anymore. I still take naps at weekend in afternoon. Some days - like today - I find it hard to get up & get going. I've CSS and I take aziathioprine for nerve pain which makes you tired and also 150mg a day aziathiprine. I came off steroids about 2 months ago.
I am now in remission on Rituximab. I never thought to feel so well again after quite some years. Fatigue is a real affliction and changed my life but now it is mild and only sometimes. I find it better to listen to my body and not overdo it when I am fatigued and then it passes more quickly.
Thankfully I am now back in remission but am about to have Rituximab no 8 infusion next month. I find that I am able to do most things but occasionally, if I overdo things, then, I get so tired, I literally hit my wall . My colour goes and I have to stop and rest.
I remember reading an article about the effects of WG with fatigue, comparing it with cancer fatigue, a doctor presented it at a meeting with Vasculitis group, I couldn't attend but my sister did. I showed it to my manager in work.
Hi Llinos.
We learn to cope with our bodies and do what we can,when we can.
I am interested by your comment about fatigue in GPA and cancer. I was diagonised with WG 29 years ago, given weeks to live, still here. 2 years ago I was diagonised with aggressive Non-Hodgkinsons Lymphoma, given 12 weeks to live, still here.
I am very low in energy, my get and go has gone but thankfully I am a very positive person. May I ask, when and where was the meeting with Vasculitis group, I might be able to disccover who the docter is.
Take care.
Hi Moley, I have the email on my work computer. It was I think about 5 yrs ago and It was maybe at an Vasculitis AGM in Derby. You could try asking John Mills if he remembers this paper. I don't know if it was ever published but it likened WG fatigue to stage 4 cancer. If you want me to send it just ask away :)
The fatigue is the symptom that really gets me down. To some extent I can block out the pain but I can't ignore the fatigue. Even when in remission I have to watch my energy levels (or spoons*) like a hawk, to the extent outsiders probably think I am neurotic.
*If you know of the Spoon theory associated with chronic illness
Once I had got into remission and started feeling better I was almost back to my normal self, just getting ococcasional bouts fatigue. It stayed that way for about two years but things have slowly started to swing the other way. Fatigue hampers me most days now and whilst I am determined not to give in to it I have to psych myself up to do something that is going to be energetic. It is easier to put it off. I mention this at my clinic appointments but the problem is all the other signs look good and I am in remission.
If I think back four or five years, the fatigue dominated my life. I really could do very little and was down to one 'task' a day, such as cooking dinner or getting through the washing. Walking anywhere was really hard.
After failing to improve on methotrexate and cyclophosphamide, I'm now stable after rituximab treatment, but still stuck on prednisone (5mg) and all ythe other support drugs. When I look at my contemporaries I think I'm leading a fairly normal life, but maybe that is because I've learnt to manage the fatigue rather than to charge straight into everything? That management includes built in rest periods of reading or something as part of every day and I go pale and cross and reluctant to eat if I miss them out. I have real respect for those who get back to work or have to look after young children.
But I am involved in several charities, still doing exam marking and some exam coaching and this year I'm hoping to go into the winter with a garden that has been sorted out better than it's been for the last few years!
I am now at a stage where I am unable to put on my own socks and shoes. I have had support rails put on the doors, grab rails by the toilet & in the shower plus extra bannister on the stairs. I have become a virtual prisoner in my own home. My only hobby is going to football but I use walking stick and make sure I have 2 close friends who stay close by as I can have seize up. I have been outside and fallen onto the patio when getting washing in and have waited some 4 hours before someone took my cries of help seriously.
I could just as well be tagged as I now don't go out due to the extreme bone and muscle pain plus the seize ups
Jools, my heart breaks to read your post. This disease is bad news for some and a terribly cruel fate for others like yourself. I will truly & genuinely keep you in my prayers.
Thank you so much michichgo I do habe better times in between but when I habe the rigors then I will cough blood and have pain all over my body. It's like having the worst flu but it lasts so much longer. I am hoping that the last tests will show no periodic fever syndrome and then I can go onto Rituximab.
To be frank, I've been taking extra morphine and even a neighbours oxycontin plus benzodiazepines. I take these to try and alleviate the pain but also to try and knock myself out and to try and sleep through it.
I have kind of given up, if that makes any sense ? If I carried on googling the various symptoms then I'd be a nervous wreck. Thank you very much
MPA, July 2013 with kidney involvement.
I used to lead such a full life. That is behind me and I'm learning to cope with my new normal. I am now nearly fully disabled.
Fatigue, shortness of breath, dizziness, joint pain, the palms of my hands (oy vey! what's that all about? ), ear pain, etc! Fatigue and low stamina are constant companions.
No energy and need to rest lot.
I lead a pretty normal life now (Diagnosed in July 2009). Once through the first 6 months of the disease life had returned to what I describe as my 'New Normal'. Before diagnosis and treatment I reached a point where I could hardly climb a flight of stairs! I still cannot do the things I did beforehand to the extent I used to - for example, walks longer than a couple of hours become challenging. A few flights of stairs are no problem but mountains are painfully (and frustratingly) slow!
From my personal perspective I think I can identify 3 distant types of fatigue which I have suffered with:
1. Vasculitus based fatigue - whilst the disease took hold and before treatment had started or was keeping things under control. This was the worst - some days it was a struggle to even get out of bed!
2. Treatment based fatigue - usual stuff we are all aware of with the likes of Chemo (even low dose), etc.
3. Pain based fatigue - I have widespread nerve pain (most likely nerve damage caused by the Vasculitis) which links through to fatigue by the pain itself and the knock on impact of very poor sleep. Now I had this nicely under control with amitriptyline (even if this drug causes some fatigue itself it was far better than the pain/fatigue). However, six weeks ago (after being on it for over 2 years) the amitriptyline starting to cause an irregular heart beat so I had to quickly stop. Jeeps, I now understand what a good job it was doing at controlling the nerve pain. Currently still waiting on a replacement to be prescribed as normal pain killers don't tend to touch nerve pain. Have also started to use a tens machine for some of the more localised pain.
It's interesting to read the comments around fatigue.
I have egpa diagnosed 3 years ago. I used to be able to work hard all day. Sadly those days are gone. I do work full time but need to pace myself and usually with a bit of lifting help from my work mates tend to get the job done.
At home I tend to have a nap after work on tough days. My lovely wife is very supportive and usually spots my fatigue before I do and advises me to stop whatever I am trying to achieve. Sadly there are a few projects around the house on a sabatical waiting for the next big push.
I just have to stay positive and leave it for another day.
Hi michichgo
I'm afraid to say that fatigue impacts on almost everything that I do. From being very fit before MPA hit, to feeling exhausted from just putting a log of wood on the fire. I still try to stay focused and positive - my wife and I are off for a few days in the motorhome and I have put the bikes on the rack!! Hopefully I will be able to do a few kms!
It's a constant struggle for me. I was very active before being diagnosed. Swam half a mile a day, palaties twice a week, walked 2/3 times a week and sometimes cycled in the summer. The gym was a winter time mostly. So you can imagine one day active the next day nothing. This has been for the last 2 and a half months and still fatigue controls my day. I may have an occasional burst of energy but if I don't listen to my body and limit what I do, I suffer with pains in my legs and aching in my body.
94444Barbie Hi I was active up to diagnosis in 2010caring for my 95 year old parents. Had done so for years ran two homes really. But what energy I had! Dad died October 2008 and Mum 6mths later exactly in April 2009. We then had all the usual of house selling etc. There was a lot of family stress which shockingly ended in me and my husband being completely ignored at Mum's funeral. Totally unexpected and emotionally I was in a bad way.My brother who lives a long way away hasn't seen me since despite everything I've tried to do or say. So was it just one of those things I ended up with vasculitis kidney failure / lung involvement . I have been so fortunate cos lungs OK and kidney function came back to a reasonable level. So yes .Very grateful. however on the fatigue front same as all of you really. you start off OK but quite quickly come to a halt. I am sorry to go about emotional stuff and have always been reluctant to mention it before' especially after reading what others have to cope with. But do feel the stress paid apart and as I am now 75 suppose has some effect on energy levels.Has anyone else felt there could be a link between stress and their illness. Our daughter had cancer in 2012 so that just about finished me. But down south we went of course to take care of our precious girl and grandaughters and husband who had to go to work. Somehow we all got through and things are going along ok really. Dare I speak!!! But oward and upward and thanks to those who manage to stand reading my saga x Good Luck everyone
I now wonder if the discs prolapsing had anything to do with the Wegeners. My sciatic nerve is pure agony. I have to lay or sit with weight on my right hand side. It really can be so hard
MPA diagnosed 11 years ago. Severe kidney damage along with some heart and lung involvement. Stamina and tiredness drastically affected and probably the hardest thing to accept
Good morning. The fatigue/ exhaustion is most days overwhelming . I was very fit / active and had a huge capacity for work / play and enjoyed mostly all that life three at me... I find this disease one of the worst I have encountered... coping with the fatigue being one of the worst aspects of it as no one can assist !!! I have a superb rbeumo team but the exhaustion is not really considered by them !!! I am recording details daily on diet except use severity of fatigue trying to find something that helps ...
I didn't even know a person could be so tired. Struggle to describe it... You know when you are woken suddenly in the middle of the night and your whole body is jangling and bewildered... Well that's me, all day every day... Its horrid. I have my shopping delivered and the man puts it in the kitchen for me. I have a cleaner. Everything takes forever, even little jobs. I have to chunk things down into little sections. I don't plan. I just think about now, this day, this hour. I have good family. Can't bear watching TV, can't concentrate to read a book. Have literally taken to picture books and looking out of the window. I'm rubbish company for any longer than about 10mins, words not going in, just washing about in the air. Most things in my life have ebbed away, and I've just watched, I haven't had the energy to sustain them. On the plus side I don't have enough energy to worry or get upset. It is a very terrible, invisible symptom.
GPA diagnosed 2015 following sinus surgery. In the early days severe fatigue, excruciating pain and loss of vision. Local hospital unable to gain control. This lead to optic nerve damage and mononeuritis multiplex. Refered to Addenbrookes. Massive amount of immunotherapy and steroids, rituximab, ivig etc. At present appears to be in remission and slowly reducing steroids. Can get tired for no reason and vision impaired, but feel i am under the best care possible under Addenbrookes and Preston Royal.
