Since being diagnosed with vasculitis, exclu... - Vasculitis UK
Since being diagnosed with vasculitis, excluding the direct effects of the vasculitis, what have been the biggest issues for you?
Suzym2uModeratorVasculitis UK135 VotersPlease select all that apply:
Being tired much of the time but being unable to sleep at night.
Weight gain which led to lack of confidence & depression
Frustration being unable to tell when I can manage to do something or not. Sometimes feel too ill or too tired to fulfil an engagement. I don't like fuss so I don't want to explain to everyone that I am not well.
On diagnosis The Consultant at Norfolk&Norwich hospital gave me 60mg of preds and a glass of water, told me I would probably need to up my insulin dose, and sent me home. No one explained anything about the disease. I relapsed 2 weeks later and had blurry eyesight. The local surgery did not understand vasculitis at all, and nearly killed me with the wrong insulin regime. Thank goodness my wife and I could use google to try and educate ourselves. After several more relapses we found Dr Jayne at Addy's and my treatment has been amazing. Now down to 5mg pred daily but have a slight liver problem for which I await a referral to a liver specialist.
I am sure that I could have avoided the depression and loss of self confidence if this horrible disease had been explained compassionately to me at diagnosis instead of leaving me to find out by myself.
Also feel tired and quite a lot of days i feel sickly and really out of sorts
Being unable to do things I took for granted, being independent and having to rely on neighbours and friends to help with daily life.
lost quite a lot of hearing now need 2 hearing aids, find people don,t understand the distress you feel at not being able to join in the conversation. often feel nauseous, and although in remission the illness never really feels far away.
I suffer with aching bones, tiredness, i get fed up of not being able to do things i have always done,lack of sleep, feeling lonely,depression some times
Fatigue which stops me from leading an active life as I did in the past. Weight gain.
Family and friends do try to understand but they are not...I can see they expect me to do things I cannot, they cannot see my frustration when I want to things but physically can't.
Weight gain is my other problem...even being very careful with my diet I gained 2 stones and it seems I am stack with them... I have never been so fat in my life and find it very hard to accept my new me....
I agree with you Zoe, I struggle in the same way i.e. with weight gain also physically and mentally dealing with the my new image especially seeing myself in photographs and in the mirror, I am getting used to it
I am improving slowly , but as I am doing more, family believe I'm capable and then I get frustrated.
Tiredness, not sleeping properly, not being able to do things which wouldn't have cost me a thought 18 months ago, uncertainty about how far I will be able to get back to normal. Dealing with problems (cardiac in my case) which are not seen as related to my vasculitis but which the initial vasculitis symptoms predated and I am convince are related.
Having to explain to work any time i am off ill.
Yes i do look well (steroids are marvellous for that) but if they let people come to work who are so ill (flu, virus, ect) i am more susceptible to catching it and having to take time off so my sickness record looks bad.
Send the person home before they have time to spread the germs.
Weight gain and tiredness. Frustration for the things I can't do anymore
Seems a similar complaint tiredness weight gain friends not really understand when you look well aching bones - not being as active as before and not doing much socially as no energy left by end of day ....... BUT still here and better off than so many others!
I find that I can now lead a fairly normal life excepting if I do something strenuous then I can be knocked back for two days up to a week with painful tendonitis and of course fatigue. The two seem to go hand in hand. But it can be a bit frustrating at times.
Under Other I would add:- Anxiety, it is a constant thought and, having had 3 flares in the 5 years since first remission, the fear that the slightest niggle is the beginning of yet another flare. Fatigue and unable to do the physical activities I did before. There are probably more!
Not knowing which of my symptoms belongs to vasculitis, which belongs to RA or secondary Sjogren's. Consultant hasn't really explained this and I don't think she really cares. She claims my Nodular Prurigo is part of my Systemic Rheumatoid Vasculitis!!
Making the mental adjustment to a changed life & the emotional effort in getting my head around it have been big issues for me. Also not being able to travel to see my family who live in another country.
I also went through an very bad time with depression. Thankfully, this is not the case now
and terrible fatigue, of course 
Where do u start so tired all the time. Depression, pain, worry u are starting another flare, worry u can't do what you want to
Exhaustion
Probably the worst thing has been watching my contemporaries being busy and positive...and not being able to do the same things as them. I'm a lot better, and can usually join in for a day, but the next day has to be a 'quiet' one. I just can't keep up.
Also, not being able to travel as we planned, putting on weight that won't come off, not being able to get a good nights sleep, being unable to walk up a small hill, let alone a big one. Not being the real me any longer?
Wow! You summed it all up for sure with your final statement! "NOT being the real me any longer!"
I have to also be cautious about everything I do. I can't stand for long, walk for long, seat for long, easily run out of energy. People find it hard to understand my mood swings, and I hate it too
I am so so so very tired all the time, it makes it very hard to do anything... And when I do get up the energy to do something, I know sometimes I will have to spend days resting to recover. Sooo very tired, yet do not get restful sleep... I believe this leads to depression, and a vicious unending cycle. They say you only look as good as you feel, this is not good!.. As I know I don't feel good!
Feeling tired most of the time bothered me most after I was first diagnosed, however I have learned to live with it and don't really notice it much anymore. I lost 2 stone within a few weeks before diagnosis so the initial weight gain I experienced from steroids didn't have too much of an impact. I am now far more active than I was prior to diagnosis and my general health is much better than it has ever been (diagnosed 2 years ago and now in remission with no medication).
Fatigue and having had to give up the active life I had before, depression, aching joints, lack of sleep and a loss of confidence.
My life is completely different now and I have to take each day as it comes. I could go on but think its all been covered.
fatige, i dont blame pred for weight gain like people do, pred makes u hungary so watch what u eat.
Completely life changing, due to having to give up work, social life etc
The tremendous loss of independence
Gaining weight
Family and friends telling me how well I look but in truth I have felt very poorly but just agreeing with them unable to say Just how I really feel
The fear for the future
Being unable to work since I fell ill aged just 22 with this, 21 years ago. And being unable to have children, because of the toxic cocktail of immunosuppression drugs I've been on since aged 25. Including at times Methotrexate (used for drug-induced abortions) and Thalidomide (notorious for birth defects). These are perhaps the most upsetting things other than numerous problems my severely disabling cerebral vasculitis causes directly.
Apart from the side-effects of the medication and the effects of the disease itself (which the question ruled out), I think it's all been pretty positive. Husband and I are closer than ever and I've found I have more friends than I thought I had (ie more folk than I expected are still asking after me and wishing me well). As for not being able to do all the things I could do before, I have so many hobbies I can usually do/enjoy at least something, even if it's just listening to music - and I don't allow myself to get frustrated about the ones I can't manage ... yet! I've had to give up a lot of things I loved doing but that's fine. I may get them back, or I may not. As I also like learning new things and mastering new skills, this new life of mine is interesting in itself
Lack of energy & tiredness; unable to do much exercise; breathlessness.
tiredness breathlessness lack of confidence in my own body to be able to do what I want
I cannot rely on my self not to have a bad day when arranging days out or suddenly run out of energy
Also frustration at not being able to do what I want to do or used to be able to do.lack of sleep, unable to sleep for more than 1.5 hours at a time.
Fatigue definitelay affects my quality of life.
I can lie in bed first thing in the morning, I'm feeling good, my thoughts tell me , `well I can do this or that, or maybe I could finish the water feature I started weeks ago, but have been too tired to continue with.
So I get up, shower & dress, & would you believe it, more often than not, I have to sit down to rest & the day goes by
My point is, sometimes I have a good day, I do most of the things my brain has planned, the lack of sleep the horrendous fatigue, all are forgotten for a few hours. I'm always hoping that I'll put a few good days together
Somehow life seems O.K to me because there is hope
Tony
Tony, I really relate to that! Sometimes I'm able to push through the fatigue and sometimes not. The days when it's not there for part of the day or even an hour or two are just brilliant, aren't they?
Lack of energy and fatigue
Other; Feeling judged for having this disease and the stigma attached to my obesity. Avoiding social situations and hiding myself away as embarrassed and paranoid about my appearance. I have low confidence which has affected my moods, behaviour and the people closest to me. Frustration and general mental anguish. Other than that, I'm great.
Difficulty in having hope for a future.
Wake up after a few hours sleep,feel as if I could conquer the world sometimes,so I get up wash and dress and find that no way could I conquer anything!!!!!
Feel tired ,in a fog, my weight gain isn't good and my whole body hurts.
Also I can't keep up with people when they are walking at a steady pace, therefore this whole list of symptoms make me feel rather fed up and frustrated.
Until recently I didn't have the fatigue that others have described but I am now unbelievably tired, don't know if it's the heat, a stressful period in my life or the disease, therein lies my problem.....defining symptoms of disease vs life in general ?
Dear Susan,
I now have to be 'looked after', not in the Personal Care sense- more in the Might say/Do The Wrong Thing sense. This is difficult to explain/quantify (imagine the trouble we have with the 'Benefits System') but, according to those 'look after' me, I am 'vulnerable' because I don't see 'danger'. Apparently I 'talk to anyone-yes I am quite sociable, it's true-but don't see the 'danger', in certain situations. It is hard for me to comment on this, after all, if I don't see something......
Put another way I have gone from someone who organised, and 'looked after' others-to one who is 'looked after' by others. I hope that this does make, at least, some sense to you-I'm never sure if it does to me, to be honest.
I guess that I STILL don't fit into any, of the available, 'categories'-oh well!
Love to John please, hope you are both well.
AndrewXXX
Hello Suzym2u
Yes apart from all the side effects of Churg Strauss Syndrome which I have had for 10 years. The greatest battle I have had is related to working. They all see we as looking healthy but when I have had bouts of sickness I am viewed with suscipion. I have trued to explain the disease to the managers and some have been mildly interested and the rest nothing but as I said, they were quick to call me behind my back. In reality, I have been a better worker than some of our healthier staff but to my detriment now. I am now seeking medical retirement so perhaps they may realise I wasn't lying about my vasculitis.
I think another issue has been the isolation of dealing with a rare disease on my own. The unknown has caused great anxiety and depression for me.
In summary, there needs to be a greater public awareness of vasculitis and an understanding from employers that this is a disease and rare and life-threatening. I was recently diagnosed with severe cardiomyopathy caused by Churg Strauss Syndrome so I think I am living proof that vasculitis is a sinister disease.
poor appetite.
constant worry/anxiety about threat of losing benefits
postcode inconsistency for med's, support, therapies,
across many hospital departments.
i have takayasu arteries a lovley very rare form of vascalitus,since i was diagnosed in novemeber which consisted of me being rushed to hospital with a massive heart attack 43 years old,things have just got worse and worse,i was a size 16 with lovley long hair now im a size 22 with very short hair thanks steroids.ive just had radiation therapy for a none working thoroid,im now insulin dependant,steroid induced diabetes,and i have blockages all over my body.i need open heart surgery as my left side of my aorta and heart are totally blocked and my right side is closing,i can just manage to get up the stairs then i cant breathe.i am actually inoperable at the moment,they have tried 3 times to get stents into me but the blockages stop this,i have crashed on the tale twice,things are not good,going in again wednesday for another attempt i would just love a small piece of my life back but im still here and im still fighting,i have the biggest buffolo hump ever and belly but im aliveeeeeeeee and ill fight and beat this disease,so come on everyone lets kick vasculitus up the bum laugth at our big bellys and swollen joints and smile everytime we take a pill or 30 xxxxxxxxxx
I have Takayasus as well....but not on the same scale as you. My thoughts will be with you on Wednesday, and I hope all goes well. Keep fighting, it's amazing that you have got through so much.
Worry sometimes the fatigue/weakness will become even worse and prevent me living living independently.
Lack of energy and fatigue
Unsupportive partner
Fatigue
Just not being "me" anymore. I'm sure you know what I mean.
The frustration at not being able to walk fast (or slowly at times!), run, swim, hop, skip or jump without becoming breathless. Makes me feel old & unfit, affecting my self-image & confidence.
Lack of understanding from employer and ignorance of occupational health staff
Lack of understanding from senior work management and occ health who tried everythingto get me out the door still there two years later
