Vasculitis UK


I have PAN plus churg Strauss which gives me a lot of pain and nausea. The Steriods have given me diabetes having to inject also sever neuropathy.

However I have now found a breast lump and having to go on Tuesday to get it checked out.

My fear is the vasculitis takes up so much of my energy IF I need to muster up some more energy where can I get it from.

If only you could walk into a shop and get a jar off the shelf it would be wonderful but that is just not a possibility. Exercise I know is good but I have to use oxygen I am unable to walk very far. My husband also has to go to the hospital on Tuesday he has to have a total knee replacement (he is my carer )although my husband first and we do our best to help each other.

At the moment I feel stuck but after Tuesday I hope both of us can see a way forward.

6 Replies

It's a lot to cope with but you just have to do it. All the best, good luck


So sorry to hear what you're going through. Most breast lumps turn out to be benign, and hopefully yours will also. My vasculitis is not nearly as bad as yours. But I know what you mean about wondering where you'll get the energy to deal with something else. I will pray you get good news and your husband's knee replacement goes well. Hang on. Hugs.


I know it's hard to do but try to be positive and focus on one day or action at a time. Don't think to far ahead and take.

Use your time and energy wisely, every time you focus on negativity you deplete rather than recharge your batteries.

Don't worry about something that hasn't happened yet, prepare for things you kn ow will happen. Accept what and who we are and appreciate what good things we have in our life., even the little things!

Talk to someone about your worries and concerns, be open and honest and don't bottle things up.

Think of 10 things each day that you are grateful for before you go to sleep, doesn't have to be anything large and exciting but it can be small and seem insignificant to others, eg I walked up the stairs without stopping to take breath, I enjoyed a relaxing bath, I'm still alive! - absolutely anything you enjoyed or are grateful for.

It's hard to be positive when the world seems to be against us, trust me I know, but it does help.

Sending you positive thoughts and good wishes,



Hi , like yourself I suffer with CSS . The feelings you have described are just like mine . I've had 2 major operations to remove necrotised tissue and may soon lose my legs .

Your genuine fears and concerns are only natural . Due to my lengthy treatment plan to slow the disease down I've experienced severe fatigue like being unable to get out of bed for days and days .

Due to all that is going on I looked at seeing what I could do to support my treatment . I have a light training regime which I'm able to do lay down , sitting or stood up with the use of handles . It's a bit like yoga but without the mat .

I've changed my diet and make daily use of fortified meal drinks ie: Fortisip High Protein and Nutrica High Energy . I've found they've helped especially when I'm lacking energy and the CSS in the gastro is flaring .

I'd ask you to discuss this with your Consultant or GP .

As you've no doubt been told focus on activities that make you happy . Try and set yourself one goal a week . This could be anything but it must give you enjoyment and satisfaction . It is amazing the sense of enjoyment that completing a goal brings .

As you know our journey through this illness will always be difficult .

I'd ask that you just focus on one week at a time and don't look too far ahead . Also never look back and dwell on what has gone or been lost .

My thoughts are with you both during what is a worrying time and I wish you all the best .



Dear Fennahj7115,

Sorry to hear that you are having such a 'rough time'. However, despite all your problems, some of which you haven't mentioned ('tummy' pain, constipation etc.) you ARE still alive! Can I assume that, like me, you were not expected to survive? Thought so, how long were you given, hours/days weeks? I wasn't even given an hour apparently-not that I was in any condition to know about it! So when you feel down, in pain, sick, unable to 'go', itchy, sweaty and so on remember these feelings, even when you could scream (go ahead, if you want) mean you ARE alive. (I bought a 'shit load' of rhubarb recently-it does work, what a relief!).

I can't add anymore, to the above, except to send you my love, prayers, and very best wishes.




I have had M.P.A. for 8 years, from my experience, within a month of coming off steroids the diabetes disappears, thank goodness.

Make sure you have bone density checks, I had narcosis both hips & shoulders, replaced. Certainly does not mean you will, but make sure they keep an eye.

As for fatigue, it`s surprising how. you learn to live with it, just don`t push your boundaries too hard. In the end, I got myself a mobility scooter, so not only can I go to the shops, but I can take my patterdale terrier for long walks.

What i`m trying to say is, you will find your own way, & you will discover the good life. It`s around the corner, you can be sure



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