Structured exercise : Does anyone have a link... - Vasculitis UK

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Structured exercise

Does anyone have a link to a structured exercise programme to address fatigue? My husband has GPA and is doing really well, he would like to regain some of his fitness levels and I have read that exercise can reduce fatigue. I believe professor Harper is doing further research into this.

Thank you.

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Just a gentle walk, starting with a very short walk at first (e.g. 5min out and 5 min back if he's done nothing before) and see how you feel next day is the way to start. Always have a rest day between exercise days at first and only increase if you felt good next day and only add a couple of minutes. It sounds ridiculously slow but it mounts up very quickly. Gentle exercise, preferably out in the fresh air often does help the feeling of fatigue. But walking is fine. As you increase the amount, finding suitable places to rest is a good way of managing the pacing - walk to a park bench, a cafe, somewhere you can rest for a while, and then walk home. But make sure you can bail out and get home if the wall of fatigue hits - less embarrasing that way!

Are you thinking of the structured exercise that is claimed to be a "cure" for CFS (chronic fatigue syndrome)? If so, be wary. There is considerable evidence showing that it is not necessarily a good way to manage CFS and can make some patients worse.

healthunlocked.com/pmrgcauk...

might be a helpful read too.

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Thank you for your comprehensive reply . He tends to be competitive by nature and does not help that he was fit before !!

Will monitor his progress carefully

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Just try to curb his enthusiasm - we meet it all the time on my home forum, PMRGCA, people expect to be back to full fitness in 5 minutes. And after you have been ill you lose fitness so quickly! I spent 10 days in hospital recently - it is 6 weeks now since I had a pacemaker fitted, and I was never really on bed rest as such but I'm only just really feeling back to where I was before. Other aspects are much better because of the pacemaker though!

He will get there - but he will get the quicker by taking it easy to start with.

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Hope you are feeling better as well , thank you for advice

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Getting there!! At last.

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I was the same ...just wanted to get back to normal....but it is such slow going, before I had PMR and GCA/and LVV... I was doing 10 hour shifts at hospital going for 5 mile dog walks and going to the gym.....since January I have done none of those things!! I have retired from work.... the consultant has told me to walk up and down stairs every hour to strengthen my muscles in my legs as the Pred has weaken them , also I have borrowed my daughters exercise bike , but you have to be careful and only do a small amount otherwise you will feel exhausted the following day … I hope he gets on ok

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It must be so frustrating and as some have stated before so difficult to cope with and difficult for others to understand especially when you look well.

Hope your recovery is going to plan

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I go for walks in Regents Park, London with my wife and we try to do at least three miles each time. Besides that, I saw my Cardiologist, Neurologist and Rheumatologist and had MRI and ECG on my heart, an EMG to test the nerves on my peripherals before I engaged with the Physiologist to set up an exercise plan both at the gym and at home to try and rebuild muscle mass, stimulate the blood vessels and so improve blood flow to the nerves. At the same time i'm reducing Prednisolone and some of the heart pills. So far so good and no problems with fatigue nor with the CRP levels.

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Have you asked your GP if there are any classes that your husband can be referred to?

My Vasculitis has affected my heart, I was offered cardiac rehab recently and have been attending that. The classes are good fun, structured and it’s reassuring that they are led by professionals that know what they are doing. My fitness levels have definitely improved.

Some Rheumatology depts have classes specifically to help combat fatigue or Rheumatology exercise classes run by physio’s, it’s well worth asking.

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Good idea thank you

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Hi, I have EGPA but am also an exercise rehabilitation consultant. I work primarily with Cardiac and Pulmonary, and long term Neuro patients and do agree that a gentle approach is best. Exercise in general can definitely help with fatigue, but remember to start slowly. I know that, relating to my own condition, the consultants all agree (especially with my lung issues, which are major) the fact that I was fit when diagnosed, and have persisted (often needing oxygen to facilitate the exercise) I am a lot better placed than would be if I had given up... good luck and remember- always listen to you body...good luck

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I have always tried to keep moving, whether it be walking round and round my garden (slowly), or using weights to keep up upper body strength, but, I can’t say I have noticed too much difference to fatigue. Sometimes it would knock me out for weeks, or just the next day, there really would be no pattern. However, even though I have been really ill and it has taken a long time to even get to this point, 3 years and not quite in clinical remission and still on 10mg/12mg of pred, I have always tried to move even a little. I used to love swimming, but I can’t drive very far so couldn’t drive there, swim and drive back it would be too much for me to cope with. I have now started to use a running machine (no running), but it enables me to walk and hold on to the sides (because of my wobbly legs), but I can set my self little targets (good motivation for me), but again I have not noticed much help with fatigue, usually I need a day to two in between to recover, but again I can be wiped out for a week; so no pattern. However, it helps with my mental health, I feel I’m doing something constructive, having lost my job and much of my life as I knew it before GPA. I have to keep fighting, because believe me it is very painful to walk firstly to even get on socks and trainers and then walking my feet and right leg go completely numb and then after my feet are in agony and my joints, well I can barely get off the sofa! I think you have to navigate this disease as it best suits you, within reason of course! Good luck with everything.

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Sorry to hear you are having such a rough time. Wishing you well

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Dear Main1234,

If you are are in the UK, and I think that you are, there is a System called a 'GP Referral Scheme'. In order to do this, you need to make an appointment, with your GP. (S)he can then refer you to the Nearest 'Participating' Gymnasium for a Full Assessment. This will be performed by a, Fully Qualified Member, of the 'Neurological' Staff. During this Test/ Examination- the Strength, of each individual limb, your Total' Body Strength - along with with their Endurance- will all be measured. A series of Exercises will then be Tailor Made for you, along with How Often and How Long these Exercises should be Done For.

After about six, to eight, weeks 'Progress' will be assessed and Changes made to the Program. Your Husband will be VERY much involved, at every stage- as will you, if He is willing! Jokes apart this is a VERY good way, back into, exercise in a Controlled and Positive way. How do I know, all of this? I used this, very root, myself- probably eight to ten, years ago.

Cost wise, I don't think it was particularly Expensive- especially if Your Husband is on 'Benefits'. I hope, that this, information is 'Helpful, to you Both Main. Can you let us all know How You Get On please?

AndrewT

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Thank you Andrew will share this information with him

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It can all depend on what level your husband is starting from ... the nhs have a great guide for all types of exercise. nhs.uk

Starting slowly is the key...building up gradually...

For many years I did go swimming with my wife , she swam and I walked and did general exercises , I found the water helpful for my knees.

There have been many studies regarding fatigue and ANCA Associated Vasculitis at both Aberdeen and Birmingham Hospitals over the past 6 years. In fact my wife took part in an ANCA vasculitis fatigue study at Birmingham QE as a healthy control back in 2014. Prof Lorraine Harper is indeed following up on the first research study with a second study just at the moment.

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Thank you John. We was fit for 65 and thinks he should be at the same level now!

He can walk 6-10,000 steps with no problem but not able to run as he did before. Think he forgets how Ill he was and how far he has come.

Thank you for your reply. Hope you are keeping well

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