Fatigue and Vasculitis

Somebody told me a good analogy only today. Imagine your body has 2 batteries, a normal running battery and a reserve.

Both batteries get recharged overnight when you sleep. If there are special demands, such as vigorous exercise or you have to go short of sleep, the reserve battery cuts in. But people with vasculitis don't have the reserve battery, so when the normal running battery runs out, there's nothing to fall back on. I thought that was good!

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  • Have been having a bad week energy wise. In fact, have hardly had any at all. I've tried to explain to my Managers how I am feeling and how badly it affects me. One them said "I get tired too but when I get home I put on my overalls and paint my sons house and I find I feel all the better for it" Yes, but you are not suffering with the illness I have!!!

    I really don't think they believe me to be honest. I'm only doing 3.5 hours per day, which equates of half a day as I'm back to work on a phased return and, according to my Occupation Health Advisor, should be back to full time hours within 8 weeks of stating back. That 8 weeks is up end of next week but I don't feel I would be able to full time at the moment. I need to have another chat to my Managers next week. Frustrating to say the least!!

    Taffy x

  • I am lucky to be retired because I don't know how I would manage to work like you. I had my sister and family visit from NZ and so we went sightseeing for two days. I cooked a big meal on the day they left and spent the next two days in bed because I was burnt out!!

  • I can totally understand that Binko, it is easy to do too much more than is good for us isn't it. My wish has always been to retire when I'm 55, which I will be in 13 months, but this is now very unlikely to happen in the current economic climate sadly. Hey, maybe I'll will the lottery :-) xx

  • I am 59, I have had Vasculitus for 3 years, the flair only died down for a while and has been nagging in the background ever since, I have never got any energy to do anything, I have been on sick for 3 years, I cant see myself ever getting back to work Im too ill half the time, I also suffer from pains in the joints and fibres that connect, it is really painful and it takes me ages to move some mornings, I also have a job to walk, my biggest problem is fatigue and loss of energy I sleep 12 hours a day nearly, and still get tired, I am off to Barts Hospital recommended by my Daughter, the GPs are not very good here and I know I need treatment, I am at presant not getting any, all I need is my batteries back

  • would you like us to send you some leaflets about vasculitis and fatigue. we have produced them especially for sharing with family and work colleagues. There is a research report due out next month into fatigue and vasculitis by Andrew MacClean from Birmingham University.

  • Yes please, that would be very useful indeed. Thank you very much x

  • Yes please me too

  • Yes please from me too! It's the single biggest problem right now. Affects my life and enjoyment of it significantly. Incidentally, my 'new' Rheumatologist tells me it is quite 'normal'

  • Hi John, Its your friend in Lincs trying out this site i too would like some copies of the leaflet for Occ Health/ HR thats Human Resourses not the Queen lol and one for one of my new consultants who is adamant that fatigue is not an issue with Vasculitis. I know i mentioned about the connection with CNSV and the affects on the hypothalamus and the reduction in Orexin-A. But as i am not a medic at least an approved leaflet may kick start some belief with said consultant that A)fatigue is an issue and B) i am serious about having an informed view in my personal medical care and progress.

    Thanks and hope i have managed to send this question correctly for my first attempt

    ps if at a later date it is possible to access the report findings of Andrew MacClean i would be very interested

  • Do you mean the Understanding Vasculitis leaflet? The report findings will probably be another month. We are going to a meeting and Andrew MacClean will be presenting his findings.

  • I was interested to read your words as my partner has Vasculitis possibly WG and fatigue is the most dominant and recurrent symptom that and night sweats at a level I have never seen. It is most definitely a symptom.

  • Please could you send me some leaflets about vasculis & fatigue.

  • Hi there, please could you e.mail me a copy of these leaflets please.

  • John,

    Please would you send me just one copy of this leaflet about "Vasculitis and Fatigue". Is there a version I can download from the website?

  • Hello Taffy, sorry you are having this challenge and you are far from alone in this. It is very hard for some people to comprehend the chronic fatigue that accompanies vasculitis, especially if you look so well (as in my case). There is a theory called the spoon theory, (http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf) this may help them to understand. Have you suggested they read the information on the Vasculitis UK site?

    I have not been able to work for over two years, and I still live in hope that one day I will be strong and well enough again to do so. Please do not let anyone 'bully' you into returning full time, only YOU know how you are feeling and what you are capable of.

    Best of luck!

    Jackie

  • Thank you Jackie, will have a look at that information. When I returned I did say that I would 'listen' to my body. I said, when they made that comment mentioned in my first post, you have absolutely NO IDEA how I am feeling and your tiredness is totally different to mine. Don't get my wrong, they have been very supportive indeed but am beginning to feel that more of my presence would be appreciated and I can understand that as we are extremely busy at the moment plus we lost one person in the budget cuts. I am currently using my annual leave for hours not worked but that will not last for much longer.

    I'm like you in that I do look so well despite the fact I have put on so much weight and have a puffy face, both due to steroids, in fact somebody told me that I look better than I used to! Must be down the puffy face is filling out my wrinkles :-)

    Taffy xx

  • Hi Taffy, so sorry your experiencing lack of support from your managers.

    Maybe your consultant or Gp could write to your Occupational Health Advisor detailing the many signs and symptoms of vasculitis and how this affects you in your day to day activities.

    You could also look into the disability discrimination act and your rights.

    I wish you all the best and look after yourself.

    Jill

  • Thank you Jill, my managers have been very supportive and maybe I am just sensitive to comments but I really don't think they understand just how serious Vasculitis is perhaps.

    It has been written on the OHA report that I do come under DDA so they are aware of it. I will talk to them again next week. I do keep asking them to research Vasculitis but will show them the information I get from John and Susan and what Jackie29 has suggested so they will have more understanding.

    Taffy xx

  • I'm really not sure that many GPs understand the fatigue element. It's hit me hard recently and it seems somehow to be self perpetuating. I sleep loads but never seem to feel refreshed in the morning. Having said that I take lots of stuff for depression / anxiety. Probably is drug related.

    Regarding your job, I was very fortunate in that I had Permanent Health Insurance. Even then I was concerned that my company would fire me and so deprive me of the benefit. I had to get a court order to prevent this. Having said that, they are a large American company - not known for their caring approach! This was 14 years ago. It may be worth a trip to the CAB. One thing you really should do is get your consultant, your GP and any mental health professional (if you have a need for one!) to write to your company with a synopsis of your current state and an 'outlook'. It is essential to be open handed about your situation. Don't get yourself in the position where you 'fail'.

  • My partner's main symptom has always been fatigue and malaise at a high level, sleeping for days and days but still tired and he is not on any antidepressants as yet but probably will do.

  • I have the same problems at work. I have an excellent Occupational Health report and my vasculitis is treated as serious underlying medical condition and covered by DDA, it states that my medications are very strong and will cause their own issues and that I need a lot of support as a vulnerable worker. I sometimes wonder whether any of the information went in when my managers read it :)

    I was having a really bad day last week and what I got was a snappy ' whats the matter with you' I said I was feeling really poorly that day so was just being quiet. Didnt go down well. Everyone else entitled to have a bad day when they are tired, hungover, hormonal etc but not me apparently!

    I was also going to mention the spoon theory on the butyoudontlooksick site. It is excellent. I can also REALLY recommend in the articles tab, 'sick humor' look at the article 'Keepin it real, terminology for the 21st century'. It is absolutely hilarious.

    I am having a meeting with my team next week and I am going to read them the spoon theory as an equality and diversity lesson. My deputy said to me recently that he doesnt consider me to be disabled in any way as I am not missing a limb and I dont use a wheelchair-Honestly you couldnt make it up!

    Take care

  • We can send you some leaflets specially prepared for family, friends and work colleagues called "Understanding Vasculitis" there is even a diagram of the body and talks about fatigue. If you want us to post you a few private message us

  • John could you please send me these leaflets on understanding vasculitus ,explaining the fatigue.Much appreciated.

  • Hi mick, can you send me a private message giving your postal address. The leaflet only mentions fatigue as one of the features of vasculitis.

    John

  • I must admit I had a little chuckle after reading Taffy's posting! My Occupational health team advised me to resign and get a part time job! I asked that same yeam if they would employ me - the answer was no!

    From many of the comments I've read over the years many people say they look 'normal' and others don't understand. The more we can do to enlighten others, the better.

    Brian

  • I have WG and sometimes people just dont understand that I can get v tired especially as I work full time. My managers at work are very understanding at work, but some people dont understand the fatigue aspect of the disease, one even compared it to her diabetes. Would it be possible to have something that I could print out so I could give it to my employers to have on file and that I could show to others so that they can understand. They already have paperwork that tells them about my illness and letters from the hospital that explain that I may need to have treatment at short notice if I have a flare.

  • I get really tired and am feeling worse than normal at the moment as I had my first infusion of my third rituximab treatment last Wednesday. I have come to work today so will prob be really shattered later on. I sometimes think that people don't believe me, everyone including the Drs always say I look really well. Anyway better do some work.

  • After being diagnosed with WG in June, I am hoping to start a phased return back to work at the beginning of December.

    I have been on Azathioprine for the last 4 weeks and have been experiencing the chronic fatigue as mentioned by so many other vasculitis sufferers. I too wake up feeling like I haven't had any sleep whatsoever even though I have literally slept for England the night before!

    Because I am on steroids people have also commented on how well I look & how much better it suits me having "a bit of weight" on my face (which then makes me feel like I looked ill before I was even diagnosed ill LOL).

    It's hard to tell people what it's all about when it's a passing pleasantry made. Instead of the usual response to a quick "hi, how are you?" "I'm fine thanks" scenario, I find myself wanting to let them know just exactly what I am going through, as on the outside I look "healthier" than I have ever done (allegedly!).

    I am hoping that upon my return to work I won't have to constantly remind people of my situation but I can see once I am back full time, folk may not be quite as understanding and expect me to be how I was. Maybe they expect me to have lost my sense of humour too in the whole process 'cos surely you can't be ill & have a sense of humour??? ;-)

    Only time will tell.......

  • Hi John and Susan could you send me some of those leaflets as I to am having problems informing my family and friends of the fatigue I feel but, as usual the response is you don't look unwell in fact you look healthier than we have ever seen you, "Yes well that was when I dropped in weight to just above 8 stone from 14", but now I am back to 14 due to steriods and other drugs due to other illnesses, ipso facto I must be well again, in fact I parked my car on a double yellow line and a traffic warden pulled me and when I showed him my disability badges he said "you look to young to be disabled" my response to him was "Why how old do you have to be ?" I really can't figure the ignorance of some people. So I really would appreciate some reading matter for them. You still should have my private email from the photos you asked for, if not message me and I will supply my email addy.

    Thanks

    Dave Buzzey B

  • Can you send us your home address by message and we will post you our info pack :-)

  • Hi John and Sue, do I just reply yo your message to leave my details?

  • If you send us an email to jandsmills@btinternet.com saying what you want we'll get it sorted for you.

  • Arrived yesterday, fab service. Thanks

  • Hi

    I get very tired even after simple tasks but i also start to get the shakes in my hands then it feels like my whole body has it, legs go to jelly and just want to sit, have to find the nearest seat.

    Has anyone else had this?

  • There is a research project taking place at Birmingham University Hospital at the moment, into the reasons for fatigue in patients with ANCA Associated Vasculitis. It is a very thorough piece of research. There will be an article about it in the Vasculitis UK Spring Newsletter which comes out at the beginning of April. I think you will find it very interesting. There are only preliminary results at this stage, but very revealing.

  • Hi I would be really interested in any information regarding fatigue as I suffer from this due to my Cerebral Vasculitis and I dont sleep so there is no chance of recharging my batteries as my brain damage seems to never allow my brain to switch off? Any advice would be gratefully received. I tried to go back to work for 2 years after my onset of Cerebral Vasculitis but due to fatigue and other resulting problems from the brain damage I couldnt cope and lost my job due to ill health last September:?

  • There is an article in the Spring Newsletter about fatigue and Vasculitis. If you send us a private message with your home address we can post you a copy at the beginning of April. Hopefully for the Vasculitsi-uk AGM 2013 Andrew MacClean from the Birmingham University Hospital will be giving a presentation talking about his research into Fatigue and Vasculitis.

  • Where is the link to download this presentation? I requested this also on a private message a few days ago, but still no reply .....

    "Andrew MacClean from the Birmingham University Hospital will be giving a presentation talking about his research into Fatigue and Vasculitis".

    Thank you ...

  • Thank you I will

    Sarah

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