What pain and symptoms can I expect from Cutaeneous Vasculitis please?

my doctor suspects that is what I have and has advised me to go to aerobics classes, swimming and cycling for my joint pains. I can hardly walk somedays as the pain I experience is crippling! I know I dont have it as bad as most of you but I dont understand what is happening to me. Just standing for more than 5 minutes causes infflamation, bruising, the rash worsens.... is this all in my head??

5 Replies

  • Can't tell you a lot about cutaneous vasculitis (not my disease) - but there are a few doctors I'd like to see have some of these illnesses! No one has tried to tell me to do that sort of exercise - but they'd have had the end of my tongue! At one point getting out of bed and getting dressed left me needing an hour sitting down before I could manage to do more than eat breakfast! Before being ill I was at the gym and in the pool every day so not the usual couch potato by any means. But riding a bike????? I couldn't even get ON the cycles in the gym - and if I did, sitting on them was agony.

    Last year I could just about manage from my flat to the village on crutches - maybe 250 yards. Luckily there is a lift or I'd have been trapped on the 2nd floor.

    However - in the UK I was a member of a gym with a warm pool and aqua classes every day and that helped a lot. I was never so bad there that I couldn't get in and out of the pool but they DID have a hoist and they would use it if you discussed your needs with them. Here was a different matter - I was worse and no such gyms - but I was allowed physio in the hospital treatment pool and that helped a lot. An ordinary gym scared the life out of me - what if I had got stuck in the water and couldn't climb out!

    If you can't get that (and it is quite limited) a good gym with a warm pool would be the next thing. You don't need to do an aerobics class, that would probably be too much although you can reduce the intensity to what you can manage. Just getting into the pool and walking is fantastic exercise - the resistance of the water makes it harder so you don't have to do as much/for as long BUT at the same time the water supports your body so there is less stress on your joints. Afterwards you don't have to struggle to get dressed: take a toweling bathrobe and take your swimsuit off and put the robe on and you'll get dry all on your own. Take the easiest clothes you have - I used to put my swimsuit on at home and jogging bottoms and top over it so I didn't have to struggle beforehand. No one cares what you look like - except maybe you. Don't hurry - there's no rush.

    And no - it isn't all in your head! It's a bit difficult to develop the rashes just by thinking about it although I'm sure there are plenty of people who think they have a lot of pain when they don't really. No one with any sense would choose to have an autoimmune disease if they had the choice - and unfortunately the people we come across have no idea what the pain and discomfort can be like. It's even worse when you have one with no visible symptoms - when you take pred you're told "But you look so WELL!"

    Mmmmm - if you think so!

  • Hi there

    I have urticarial vasculitis so can feel your pain. Have you been referred to a dermatologist and/or rheumatologist for investigation and treatment?

    When I first fell unwell and had my rash, fatigue, joint pains, my GP told me to be careful as far as exercise was concerned and not to overdo it. If you do have something autoimmune going on then on the one hand staying mobile and keeping your muscles as strong as possible will benefit you, but this has to be balanced with your pain levels, fatigue levels, exposure to the sun (if this is a factor for you; it is for me). I am able to cycle, swim, walk and Pilates is highly recommended, but only at a very gentle pace.

    For you, I'd say a maximum of 10 minutes every third day to start. And then, and only if then, you find this manageable, you can build this up very, very gradually.

    But more importantly I think you need confirmed diagnosis and treatment to get you feeling better. I hope you are getting the attention you deserve.

  • Hi Badgerswood23

    You really have my sympathy. I have lupus, APS and Raynauds and early last year developed a very painful rash on legs, arms and thighs. Pain at night so bad I couldn't sleep and only relief was covering myself in Aqueous cream every five mins. Because of lupus GP would not treat and referred urgently back to St Thomas . It took 7 months for the appointment by which time the rash had mostly gone. Only other symptoms were burning feet and legs, extreme fatigue and joint and muscle pain. The last three are common with lupus anyway so tricky to know if worse because of rash.

    Firstly Dermatologist confirmed, without biopsy, that it was cutaneous vasculitis and the Rheumatologist agreed. If/when rash comes back I need to have a biopsy done urgently to ascertain type of vasculitis and determine treatment if any.

    I would suggest that you keep a diary of all your symptoms and if anything shows on skin take photographs, it might be the only 'proof' you have. Watch for extreme fatigue and joint pain and any burning or tingling and bruising. As for exercise, well you are your best judge on that one. For sure keep moving, but PMRpro seems to have the right approach. Before I got the rash I went Nordic walking, that's a complete no no for me at the moment nearly a year on, but I try to build up stamina, not easy.

    Take care and keep a careful watch, you know yourself best. Good luck

  • Thank you all for your replies. i have been referred to a Rheumatologist and it was she that suggested the exercise. my tests are not conclusive yet. they have all come back as normal but with a raised protein level in my blood and some blood in my urine (which is normal for me these days)

    she has asked me to stop all medication for now which has resulted in increased rash, tenderness and inflammation. i also have plantar fasciiitis and despite having a steroid injection in my foot it has made only a slight improvement. i am also suffering from weak and stiff muscles and sitting still for short periods makes me stiffen up and have difficulty walking/standing but once up and going I am ok.

    i am due to have a biopsy in March but as my rash fluctuates I have also taken photographs so she can see.

    i asked the question because both my G P and the Rheumatologist have said it is 'JUST'' in my skin. so why I am struggling with pain so much? is that normal with vasculitis of the skin?

    I see the need to keep moving and will take your advice about taking things slowly. thank you all

  • This is clearly not in your head. I too have cutaneous vasculitis and I too have acute joint and muscle pain when I have a flare and other symptoms too. My GP proposed cognitive behavioural therapy as the way forward and I was not diagnosed for seven years. I suggest that you ask to be referred to a vasculitis specialist. Most doctors do not know enough (if anything) about vasculitis. My life has changed since I was eventually referred to the team at Addenbrookes who know and understand and I feel I am receiving the best care and treatment possible. I asked for the referral after doing my own research. It is not all rheumatologists who know about vasculitis. You need specialist advice. You could find out where your nearest specialist team is and ask to be referred to them. I am sure Vasculitis UK will help you with that.

    Good luck.

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