Hi, I don’t normally post as feel a bit shy about asking for advice, but I am just interested in knowing anyone else’s experience. I have since my diagnosis, tried to do some exercise each day, however little. I thought, and I have seen on this site, that there are advocates for exercise as reducing the effects from vasculitis; I think a study was even done about the benefits of it. What I am curious about, is I never seem to get any fitter in fact last 2 weeks I have barely been able to walk as my legs have felt like lead, breathing heavily, heart racing and feeling light headed, so not sure if doing more harm than good. It’s always a bit dispiriting as never seem to get further forward and I just wondered if other people with vasculitis GPA have the same issues. I still have low level raised ANCA, also my feet and joints suffer so I can barely stand as it’s so painful. I just get so frustrated as want to push myself to feel better, but always seem to go 2 steps forward and 4 steps back! I was diagnosed in 2016 after 2 years of misdiagnosis, I have 10 to 15% scaring into lungs and I still in 10mg of pred a day as having to slowly reduce as feel so Ill if reduce too quickly. I see others on here saying they have run marathons etc and I feel a bit rubbish as it takes all my effort and energy to do the bits I try to do each day! I would really appreciate other people experience or advice. Thanks 😊
Help with exercising with GPA.: Hi, I don’t... - Vasculitis UK
Help with exercising with GPA.
Firstly, don't ever be afraid to come on here or Facebook and ask for advice or others comments. We're all here to help. My husband has had GPA for 10 years now and put on the normal weight due to the steroids. He got down to 6mg but just bumped up to 40mg short term. On his way down again. He is always breathless, gets asymptomatic chest pains, can't walk very far and is very slow so doing any fitness regime is a no no. He exercises by cutting the grass, taking the dog for a walk and working in the garden generally. He does what he can and not what he can't, does it in small bursts and rests. Everyone is different, so just do what you can to keep some level of movement and try to eat sensibly. Best wishes
Thanks for this, it’s helpful to see how it affects others, otherwise you just see yourself as being useless and not going anywhere! When I say I’m exercising, it really is overstating as just trying to walk a little every day and some very light resistance weights, it’s just frustrating that I don’t seem to get any further forward. It’s not knowing if this is it, is this the damage that’s being done or if things can better. It’s being 4 years now, so I feel I should be feeling better, this disease really takes from you, I’m always amazed at how little I’m able to do and even that completely wears me out! Thanks again and best wishes.
You may simply be trying too hard. OH is on rehab physio and the instructions are what I always say on my home forum: 5 mins out and 5 mins back for the start with walking. With time you can add a minute each direction as you feel up to it. One day exercise, one day rest is also VERY important. Later you may maange one day walking and the next day something different using different muscle and less of it.
And the rehab doctor says she isn't expecting great improvements - she is looking for maintaining what he has. He did too much at the appointment before last and it really put him back for over a week, still not really right. It is a slow process - months, not even weeks.
Thanks for this, I know I do have a tendency to push myself as feel this is how I should be beating it, but I’ve also tried building up etc., and I really do not see any difference to stamina. Also it’s so varied to how I feel on different days, so as I said last 2 weeks have been horrible, legs feel like lead, even having a shower I come out heavy breathing and legs feel wobbly so have to sit down, it feels ridiculous and I do doubt myself. It’s vey hard to accept the limitations of the disease and I do always feel is it me, am I not doing enough etc,. I guess it’s about perseverance and acceptance, which I’m still learning to do. It is helpful to hear others experience and this has been frustrating me for a while , which is why I decided to reach out. Thank you and best wishes.
Hello I have an unclassified MPO ANCA vasculitis before it was diagnosed I was pretty ill and in a lot of pain this plus fatigue meant my muscles were very weak and I was pretty much doing nothing just existing I didn't even realize I was so weak I just felt so ill.Once on immunosuppressants I felt so much better but very weak.I went very nervously to a chair based exercise class which was a supportive group.Must people were either twenty years older than me or had other chronic illness.Gradually I got stronger and improved my balance I then started an over 50 s circuit class and finally low impact aerobics.I would never have ever believed that would be possible and aerobics was hard but the teacher was supportive and if I found it too much I stopped.Also if it was a bad week I would not go.This was all over 18 months,these classes are stopped and now I'm doing online classes I think I have lost fitness being shielded but once this is over I will go back.
Hi, thank you for giving me your experience. While I have not been to any classes, I have been trying to do something, if not every day then most days, mainly walking. I do have very painful feet, from peripheral neuropathy from the vasculitis, and I get such wobbly legs, that for my own peace of mind I tend to walk laps around my garden. I also do resistance exercises and weight baring as I know you lose it if you don’t use it. I just wondered why I wasn’t seeing my stamina getting better after 4 years and if this is what I could expect. I just can’t find rhyme nor reason for when I feel worse, it makes no sense and has absolutely no pattern - it’s incredibly frustrating. I wondered if it is because I still have slightly raised markers, despite being on 6 monthly rituximab infusions that my body is not in remission, do things get better when completely in remission? I know this disease can very personal and can affect people in very different ways. You just see people posting amazing comebacks on this site and it is quite disheartening and you do question yourself as being useless. Anyway thanks for reply it’s appreciated. Best wishes.
NEVER, EVER compare yourself to others. That way lies madness! No two people experience autoimmune illness alike, nor do they respond to the medication the same.
Even if all you do is manage to maintain where you are, that is positive. I collected a rollator for OH this afternoon - his progress using it to get to the car was utterly different to him walking around the flat. And he walked from the car to the flat better even without it.than he was walking going out. Confidence has a role to play too.
Please don't be disheartened it's a long hard process and I have ups and downs I find that it's very frustrating never knowing just how I will be.I had years during the process of diagnosis when I felt like I was dying (not exaggerating that was how I felt.) During those years I did pretty much nothing I had to take early retirement because I was too ill to work. This was a life changing illness for me and everyone is different there's no right way to be it is what it is.If you saw me I don't look fit I'm not.But I am a lot lot better than I was and that's because I finally found a doctor who could help and the right treatment.I hope you and your doctor's will get your condition under control and you will feel improved.My blood tests are all normal now something they hadn't been for years before I was put on immunosuppressants
I have a liver disease too known for fatigue I found this article and cried as it summed up how these diseases feel maybe you will find it interesting.It helped me realize it wasn't just me.
bmj.com/content/345/bmj.e70...
Before this was diagnosed when I just had the liver disease I took part in a trial involving an exercise bike and saw the doctors graph that the point when my exercise became harder was lower than for a healthy person so it's a real physical thing.My treatment for vasculitis has helped my liver too something it's not meant to do but I think these conditions are all connected anyway.
Jane.
Hi Jane, wow thank you for this link, while it presents a more extreme case of fatigue it still resonates with how I feel. It is also interesting to read the response from the doctor. I think you are always measuring yourself with how you used to be and as I said I am so far away from how I was. I am also not very good at saying I’m struggling, I just say I’m fine keep pushing, keep going as feel so guilty I don’t work, can’t drive my kids around, or do any of the number of things I used to as a working mum. My husband is always saying how amazing I am, I just never listen I just focus on what I’m not able to do. I also think that the medical profession do not allow the conversation about how fatigue affects your day to day life, which is why I don’t mention it as I feel so silly, because it’s ‘invisible’. It’s the lack of a pattern to it that’s so frustrating, as believe me I have tried to establish if there is any pattern to how I feel on a day to day and there is no pattern, so it makes planning for anything nye on impossible!
The article also mentions ‘brain fog’ OMG I so have this, to the extent that I have real trouble reading, using the computer etc., again it’s very debilitating to every day life.
Thank you again Jane for your reply and link it’s appreciated. Best wishes x
Thank you PMRpro, I know what you saying is right, it’s just so frustrating being in your own body at times, when it won’t do what you want it to!😕 . It’s hard to ask these sort of things at the doctors/ consultants as it sounds so silly and it’s not obvious to see or explain, so you think it’s all in your head. I think it’s why I felt the need to ask the question here, as just wanted to know if others had the same/ similar experiences. Thank you again, you are always very helpful.
I do my best - and I also try never to over-hype anything. I lost most of my 50s to my a/i disorder, I'd been reasonably fit and there it was gone. My late 50s and 60s were a bit less upsetting - I was older and retired. But now, late 60s, and the last 18 months have been pretty rubbish. But some bits are easier to accept ...
Yea, I was finally diagnosed at 47, just got a great job after going back into work after being a stay at home mum. Was in the middle of a master’s and then all gone. It’s been a lot to lose, and im still so far away from how I was, that’s why I think I’m always trying hard to push myself to be better. It’s very hard to get any real routine going as never know from which day to the next I’m going to be feeling. Thank you for replying to me. Best Wishes Tbrz
Hi Tbrz, as you have discovered by the replies your not useless and we are all different, I am lucky I guess, up to now although ANCA Positive was diagnosed quite quickly and didn’t really experience severe symptoms but it was hard. Winter was a bummer, Jan and Feb dark and hopeless, I couldn’t go to the gym because I felt embarrassed I would struggle and then a breakthrough. My next door neighbour is my ex PE Teacher from school and his wife suffers from rheumatoid arthritis and her specialist advised her to invest in an exercise bike.....it worked, supported the body and doing what she could a few times a day got her days going. I did the same, by end of March I was shedding the weight from Steroids and although still ANCA positive I am actually cycling 17 miles a day outside. Lock down would have been unbearable. Keep at it Tbrz you will get there. In your own time though please. If you feel better in your head, the infection becomes a journey and the journey becomes bearable. Just do what’s right for you.
I also have GPA and find it hard to exercise. I used to ride a bike to work nearly every day , now if I have a busy day it takes two days to recover. I was diagnosed in Feb 2018 and as a type 1 diabetic with a heart problem and a couple of other things it makes it interesting 😂😂 and now the sun is out what a bonus
Hi Tbrz
I think you are being too hard on yourself. If you push too much you will feel ill. I suffer from
Sciatica and was told to do Pilates or yoga. I had never done anything like this but 3 years later I am still doing Pilates. Our class is mainly stretching but we also do breathing exercises and it has helped enormously. I also swim and just did swimming when I was unable to do any thing else. During lockdown I have been able to build up gradually how far I walk each day. I was told by one of my docs that the jelly/heavy feeling on my thighs was caused by steroids so you may feel better as you reduce them. Good luck x
I have also had GPA for about four years now. When the medication improved my condition I started swimming a few times a week and this really helped my fitness. As it is low impact the only pain was mild soreness in my shoulders. When the pools closed this was no longer an option. I then started couch to 5k. The first couple of very gentle runs seemed ok but I then started to suffer quite bad lower back pain. I can’t be sure whether this is down to the GPA, poor technique, cheap trainers or something else. I’m having a few days off and am then going to try again when the pain eases. For me I think swimming is the most beneficial exercise and hopefully the pools will reopen soon.
I would just like to thank you all for taking time out to reply to my post, it’s being so helpful just seeing others having the same issues as myself. I think this disease can be a very isolating experience especially, at the moment with shielding, so I’m glad I plucked up courage to post this question. I think what I have gathered is there is no right way and that we are all trying to navigate it in our own ways, using different exercise which suits your own limitations. For me it is walking, I just need to accept that maybe I might not be able to go hiking in the Peak District and that is okay. I think maybe I need to be a bit kinder to myself, but I also think these sort of issues need to be addressed more by the medical profession. I don’t think I have ever been asked how I am doing with exercising, fatigue, or brain fog. I have mentioned it, but the conversation has usually been dismissed, even under the amazing care at Addenbrookes. I think the focus is usually on the immediate threat of vasculitis and ensuring it is controlled and obviously rightly so, but the long term issues do have a significant impact on your day to day life and I do wish this was addressed more, so that you are not left thinking you are useless, a fraud or that you doing things wrong! Thank you again everyone, stay safe and best wishes 😃
Everyone is so different - we have a guy on my home forum who was a firefighter when his vasculitis started and he ended up in a wheelchair. 18 months later he ran a 10km run and with a few years he was back to mountains: he climbed Annapurna IV in the Himalayas about 8 months ago. It can be done - you have to try and you have to go about it the right way. John started his return to physical fitness in the hydrotherapy pool - it was all he could manage.
Hi Tbrv
i too have GPA with lung and kidney involvement. i now walk with the aid of a stick,
i also have neuropathic pain and also find exercise un doable, i have tried to push through it
but find the exhaustion and fatigue too much to contend with..so my exercise is being as active as i can indoors, and not spend too much time sitting.. i have been better since i have been on rutiximab, but the same as everyone else pain is always an underlying persistant problem...Not much help to you, but thought i would share
Hi Wageners, thank you for taking the time to share, I wanted other people’s experiences to see that I’m not alone in my struggles.
I also walk with a stick, which is why I tend to stay home as feel less vulnerable. Also, because I get so exhausted or the the pain can be too intense it makes it difficult for me to go anywhere on my own. I wish I could go swimming, but I live quite far away from a pool so it would be too much for me to drive (I struggle driving, because of pain in feet and eyesight affected) swim and then drive back, so again I’m restricted. I have a running machine (not that I can run), but I use it to walk as can hold on to the sides to steady myself, but again the pain in my feet is unbearable so have to gear myself up. Mostly, I walk laps round the garden trying to do as many as can, which widely varies from day to day. As said before I have no pattern, so it always seems I am never gaining anything. I suppose the thing I’m gaining is doing something and I should look at it like that! It’s very difficult to accept, which is why I’m always pushing myself just feel so dispirited when see people saying what they’ve achieved ☹️Especially, when having my bad days/ lately last couple of weeks.
I’m also in Rituximab, every 6 months, so while I saw a big improvement after first couple of infusions, I’m now not seeing much now, except my bloods are stable, although still have stubborn slight raised ANCA markers, so I don’t know if that has an impact on my ability to get fitter; maybe someone out there has any thoughts?
Anyway Wageners, so sorry for the ramble, thanks again and best wishes. 😄
Hi there,
I'm about 2 years ahead of you and faced the same barriers, as frustrating as it is there is no fast track. I went from a marathon runner to not being able to get out of bed on the bad days. Listen to your body when it tells you to stop, do so.
Yoga was my go to exercise, when I was able, and gradually built my walking up. I would walk 3 paces then trot ( I can't honestly call it running) 3 paces. Never far from home or help though. I progressed to doing a bit of cycling.
It is tough.
It is slow.
I have a punch bag too, it is a great stress reliever!
I'm not as active as I want, there are times when I still cannot do anything, times when the after effects of exercise are debilitating.
Don't over extend.
Don't give up
Hi, I am interested by how many anca-vasculitis sufferers have these symptoms. I too am treated at Addenbrookes. I have seen three neurologists, all gave the same reply i.e. the tests are fine so I am fine. Unfortunately, I am not. I have "tight sock" symptoms in both feet, sometimes very painful at night, and pins and needles in my left hand but also suffer from the awful weakness in my legs. My ability to exercise is greatly diminished from being very fit to only being able to do minimal jobs around the house, gardening is off and my walking is really limited. Some days are worse than others and if I push it I feel really unwell and exhausted sometimes for an hour or two, sometimes for a day or two. I too am on Rituximab but these symptoms started before the treatment. I agree with you Tbrz, I too am very grateful for the wonderful treatment at Addenbrookes but I do feel that these symptoms are pretty much disregarded and they do greatly affect one's quality of life.
I rather dread just having telephone appointments. Even with a list at hand, it is quite difficult to explain the ongoing problems on the telephone. My various appointments have been either cancelled or turned into telephone calls. I have been shielding throughout and feel quite 'alone' with all this now.
Hi Amms43, thank you so much for taking time to reply and give me your experience. You sound so similar to me, your experience gardening is like mine, even doing something really simple such as clipping a bush leaves me in a gasping wrecking that my husband is horrified when he sees the state I’m in. It feels so ridiculous, they are literally simple tasks, changing the bed, hoovering, cleaning the bathroom all have to be staged as I’m am completely wrecked. It feels so reducing and I feel so pathetic, that’s why I plucked up the courage to ask as I just don’t seem to getting any further forward. I have just come off the back of a UTI infection (another delight since having this disease!) and I have been rendered completely unable to do much at all, it then takes another couple of weeks to get over it and so I’m knocked back again. I also just have days/ weeks where I don’t even know what’s a matter just struggle with even basic things such as showering, it’s hard to not let it make you feel useless. I’m s as kid limited, because if I do anything my feet are in so much pain, like you, tightened skin, burning sensation, spasms, numbness and lots of other fun things!!!!
I have mentioned it both to the GP and Addenbrookes, and it really is not developed so I’m afraid I just go into a shell feeling I’m imagining things. As said I’m stable, on 6 month Rituximab and 10mg pred, which I’m slowly tapering as get so sick if I rush things, however I do have slightly raised ANCA and other slightly raised markets, which they say the disease is still active although not doing any of the damage it was when before diagnosis. I agree it will be hard to discuss these issues on a telephone conversation, as hard face to face, it’s hard as it is a very lonely experience, even with loved ones as I feel so utterly reduced. I suppose it’s just about keep trying and keep reminding yourself that things have changed and to find little wins, although it’s said than done sometimes! Thank you again, your response really made me I’m not the only one feeling this way, take care and best wishes 😄
Tbrz, everyone's illness is different. First off, my doctor informed my it would take 3 yrs AFTER my lungs healed to start feeling "back to normal". It takes a long time for scarring in lungs to heal up. He also says excercise is good and recommends 40 mins a day. Walking or bike riding will do. I used to run marathons, was diagnosed in 2016 with GPA. I now struggle to finish 3 miles, but I continue and hope to complete another marathon. But if not, at least I tried. Don't give in. Victory over Vasculitis!
Hi, thanks for replying, judging by the different response, people are having different experiences. No one has ever said to me how long lungs would take to heal, I was at my worst 80% affected I both lungs and have luckily reduced to 15%, which they say may be with me long term?? I know I feel that 15% scaring, it can be quite frightening at times. I am walking every day, as I have said i am constantly pushing myself, I was just concerned that I was seeing no improvement and I have sen that they say that exercise improves outcomes such as fatigue etc., well I have not seen any such improvements. I just wanted to know what to expect as I keep fighting, every day feels like a fight and I try to be hopeful, it is just a bit demoralising and was thinking I’m the useless one!
Anyway thanks again, take care and best wishes.
Thank you for coming back to me. I think we are in quite similar conditions. I was undiagnosed for almost a decade before finally getting my diagnosis in 2007. Your reply rang so many bells with me. I am quite old (77) but I find it difficult to overcome my resentment for not getting any better and getting weaker despite my efforts. The respiratory specialist says I am fine but of course he doesn't live in my body and it is so dispiriting to be ignored or belittled. My lung tests, for which I have waited for almost a year, have just been cancelled. I feel that with Covid taking over so much of the medical world it is becoming harder and harder to be heard.
In the spring Lesley Noblett who has run the Cambridge Vasculitis group wonderfully for years had to abandon our meeting where the main lecture and discussion was to speak about peripheral neuropathy and the problems you and I have discussed. I would have very much liked to hear what the consultant had to say and to hear the views of other patients with similar problems.
I am sure my lungs have not healed at all but it has not been suggested to me that they would . We keep trying because we cannot do otherwise but it is getting harder. On we go Tbrz.
I was diagnosed in 2016 after 2 years of misdiagnosis, so it obviously shows the improvements made in diagnosis!!! I’m now 51 and as said I was a busy mum, with a job going places and I the middle of an Masters, sadly due to initial 9 rounds of chemo and aziathroprene I was still not getting any better after 2 years, so my husband asked to be referred to Addenbrookes. Rituximab has greatly improved me I am stable, but these left over issues do get me down as it is just so frustrating not being able to do simple tasks without it being a huge physical toll. That would be interesting to hear about the peripheral neuropathy, as I’ve just been told it’s long term condition and trying different drugs to help, which have not helped at all. Let’s hope you do get to hear the discussion, if you do please post what was said I’m sure many will be interested. Thanks again, your reply has made me feel less rubbish as there is someone out there like me! Best wishes 😃
Hi Tbrz and everyone else who has replied to original post. I too diagnosed in 2016 and feel much better reading that I am so not alone in my daily struggles. I find LOTS of little bursts or something like gardening, ironing, hoovering etc with rests every 20 mins or so and then I'm ready to go again. My specialist has finally referred me to the local Pulmonary Rehabilitation clinic which is mostly for COPD and other lung diseases so we shall see if that is of any help whatsoever. I will of course report back to say if it is or not!
Take care
Thank you for the reply Red-head44. I hope you don’t mind me asking, do you have scaring on your lungs? If so to what extent? And how did you get referred to a pulmonary rehab clinic?
I think my question has hit a nerve with a few of us. It seems we’ve all been suffering in silence, I wonder why this might be, is it because we feel grateful and don’t want to bother the doctors. Or is it because we are told we are better (in bloods etc) so feel foolish or feel we should be doing better. It would be good if the doctors saw some of these posts so could see how we are suffering in silence. Thank you again and best wishes.
I kept mentioning my shortness of breath and as my specialist couldn't see a reason for it decided to refer me herself. I have scarring on one lung but it isn't bad. I think we come up against a culture of 'specialist knows best' when it comes to complaining about other things that are limiting our quality of life, and we are brushed off. Perhaps now is the time for Vasculitis UK to push to have our concerns taken more seriously - with Covid 19 patients are left with life limiting conditions after they have recovered from Covid and these are being taken seriously so why not us?? And yes we do feel foolish complaining too.
Hi, I totally agree about what has been said about Covid-19 patients who have been experiencing symptoms so similar to me. Suddenly this is of interest, yet as you rightly say, this is what many of us have been experiencing for many years! Maybe Vasculitis Uk can push this agenda, with these sort of symptoms currently in the news; use the opportunity to highlight how this affects many in the community. Because, I have totally had this reaction when I’ve mentioned these things to GP’s, specialists etc, hence why I’ve felt stupid and that’s it’s something to do with me doing something wrong. Thanks again for the reply.
We are told do often to 'get moving, lose weight, eat healthy', sometimes though we try really hard to do the right thing it just doesn't happen the way we think it should . Other people around me seem to lose weight once they start to put some effort in, but no matter how hard I try like you I end up feeling worse , achieving nothing except depressing myself. I have always been a competitive person and find vasculitis and bit of a 'rug pulled from under you disease', just when you seem to get to a place you feel like you are achieving , another part of you gets affected. I still get mentally affected at how little I seem to be achieving especially when you go for check ups at the hospital and they weigh you every time, I tried doing sensible exercise, 'Couch to 5k', it was only after the first one where you walk mostly and only run for a few mins, but I ended up in hospital as it set everything off. I then tried the gym, under supervision from gp, that ended up the same way, its exasperating, so now I garden, walk, and do cleaning and housework vigorously, I am also experimenting with the intermittent fasting , all ok so far touch wood. I am doing this as I have given up mentioning everytime I have pains to gp, firstly I can hardly ever get an appointment and when you do they don't really have a clue what to do anyway. Sometimes my ankles and feet have been so bad I could hardly walk, would come out of the blue, could last up to a month or so then disappear as quickly as it arrived, that can happen to any part of me that I stress if I overwork it. Sorry this unexpectedly turned into a bit of a rant, but what I have learnt after having this thug of a disease, is don't look round at what other people are doing, don't compare, just do things that keep you as active as you can within the realms of your comfort, like I say I used to work for RHS and love gardening but now I have to do it in segments, otherwise I would be ill in bed , pace yourself and don't feel guilty , we are all unique and you know yourself better than any doctor. Good luck don't be so hard on yourself.
Are they sure it is whatever the diagnosis is and not palindromic rheumatism? We have someone on the forum who had similar movable feasts of joint pain - and when PR was suggested to the rheumy they agreed.
Hi regarding palindromic rheumatism, tbh I have given up suggesting things it could be , it took 5 years of constant coughing and recurring chest problems before I was diagnosed with sarcoidosis and then when I was having all the biopsies for that , they suddenly discovered I had vasculitis, but I am also supposed to have fibromyalgia, inducible laryngeal obstruction, lymphadenopathy etc etc so I am a bit reluctant to add another disease to the list that appears to be growing and I am only in mid 50's. I am fed up of all the drugs especially the methotrexate and maintenance prednisolone, but I need to look on the bright side , I am working still quite active , but it is hard as it is a health problem that because people cant see it, unlike a broken arm, they don't realise how serious and hard it can be to do 'normal' things on some days. I have found massage enormously helpful , but very expensive, and anything that can help with stress does seem to keep some symptoms at bay.
Thank you dovegirl51 for giving your experience, this is helpful and some comfort that I’m not the only one experiencing such limitations. I like you am highly competitive person, especially with myself. You are right about finding what works for you and I think walking might just be it, with a few strengthening exercises thrown in. I have a little trouble with my head saying absolutely go on a run, 10 mile hike, only to very shortly realise that is an absolutely not going to happen!!! 😂
It has been very helpful, hearing everyone’s experiences and to know I’m not alone in my struggles. Thanks again for taking time out to this. Best wishes.
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