Regaining strength during treatment.

[luggsey]

My Mum is a few weeks into treatment with pred and cyc, she doesn't yet seem to have regained much strength. Don't misunderstand me, she is much better, she couldn't lift her head off the pillow weeks ago and can now use her arms, which are very weak, wash herself mostly, she can just about roll to one side in bed, she can use the exercise bike for two minutes from a wheelchair and she can stand if helped up for a short time. Definitely no steps yet. She can sit in a wheelchair for a couple of hours and she can lean forwards. Now to me it just sounds like more recovery time and strength building is required but I would like to hear of anybody else's experiences in this respect? How long did it take others to recover? She has been bedbound since mid March. Mum is seventy and was previously well and walking.

[LynneJ Vasculitis UK Volunteer]

Morning

It took me about 18 months to get back up to full strength. It is a very slow job I am afraid.

I have found this link that may interest you.

thh.nhs.uk/documents/_Patie... It has a little bit about muscle loss.

Hope you Mum is feeling a bit better in herself .

Lynne

[luggsey]

Hi Lynne, thanks for that, a very interesting read, My spent three weeks in icu but can't remember it which I think is a good thing for her. She is now at the stage where she just wants her life back and I think she is having a tough time right now excepting everything that has happened to her. She wants to be home!

Hence me trying to see if I can estimate how long before she has mobility compared to other on here.

It is so hard to watch your loved ones suffer, makes me well up just writing this...

[John_Mills Volunteer]

It took John 6 months to get back to some kind of normality but probably a year to get back to full strength, even then he was/is not as strong as he was before WG. . I am afraid age plays a big important role too. Muscle loss can be something that not everyone regains fully. Build up slowly and surely a little more each week. No two cases of Vasculitis are exactly the same and can effect different people in different ways. Hopefully as time goes by your mum will get to know her strengths and weaknesses as she gets to understand her type of Vasculitis more and then she will start feel better in herself.

Best Wishes

Susan x

[luggsey]

I think for my Mum its now hard for her to accept that she can't walk yet, I don't think she will get back her strength until she achieves remission?

She began to lose the use of her legs early on before her collapse,stroke and Renal failure so I suppose the legs will be the last thing to start working properly?

She had little use of her legs weeks ago but feeling and control are returning.

She also feels very sick and dizzy when standing, normal for this situation?

[Robb]

Good Morning

Taking a long term view is so important to her recovery-initially think in terms of 2 years but in reality the journey is on going and much longer-

When my wife finally was discharged from hospital with WG and a Subarachnoid Haemmorage and DVT- simply getting out of bed was a major acheivement-and she would sit in our conservatory just sleeping or resting- because the answer to recovery is to give the body a long time to rest and recupperate-

Taking her out in the car to beauty spots to simply sit and watch the world go round was all part of the healing process-and over time-she gradually walked further- did more about the house and after 9 months started on a phased recovery to work (she was 54 at the time) and 2 years after her WG diagnosis she now has been working full time for 9 months albeit going to retire early in August this year- Still on mainetance drugs and warfarin there is no immediate plans by her consultant to start reducing them further. Time is the key!!

Hope your mum show continuing signs of recovery-

[luggsey]

Hi Rob, glad your wife is doing so well.

Was she unable to walk initially?

[Robb in reply to luggsey]

Hi-

Before being diagnosed with WG my wife was wrongly diagnosed as having RA because her feet and lower legs became sore and swollen when she walked far and her hands and finger joints were also sore and swollen- once she had been diagnosed with WGand on the correct drug treatment she had no problems walking-although initially she could not walk far-and walking up hills or long stairs still is something she has difficulty with- she has come to recognise her limitations and not ask too much of herself-but gradually she is doing more-the past 6 months (almost 2 years on from diagnosis) she has made great improvements while keeping her maintenance drugs constant-