does anyone get swollen fingers and burning sensation in their hands?

[Katie18]

I have churg strauss symdrome and recently I have started to suffer from swollen fingers and burning sensations in my hands sometimes. This is particularly after I have done any exercise, been swimming, feeling under the weather or coming down on my steroids. Does anyone else have the same problem or know why this may be?

[Jann]

Hi,

I get swelling in my hands and feet after walking but a long walk of several miles. It is more pronounced before my treatment. However it still happens. It is always much worse if it is hot. I do not get it is I am exercising for a short period. It is the same with the burning sensation. Sorry I do not know what causes it.

[Porky]

Hi

Yes, this has been a constant problem for me starting before Dx, I had extensive rashes, erythromosis (not sure that's the correct spelling) on my my hands and feet to the point I could barely stand or use my hands. the burning is worst if my hands are warm/hot and is accompanied with swelling. Now I am on Mtx, Plaquenil, steroids and it has gradually subsided. It is always worse if I have been using my hands alot during the day, after exercise etc There are times when it can be so painful that I have to top up with pain relief. I now have a loss of sensation in my hands.

[Dave_Buzzey_B]

Hi Katie, this could be a reaction to the medication you are on and as such you should consult your doctor/consultant. I am on methetextrate at the moment and for a few days after taking my weekly dos both my hands and feet and other joints swell. I have consulted my main care team and am awaiting news wether my consultant can have permission to put me on rituximab. Hope this helps and lets us know what your care team think the problem is as this maybe useful to others.

[mandijt]

WG

I have symptoms like this when I'm starting to flare - in my feet too.

[Katie18]

Thanks for your replies everyone. I will speak to my consultant and doctor. I'm a bit frustrated as my consultant has just cancelled my appointment and I've not been given another one until mid April.

[LynneJ Vasculitis UK Volunteer]

Hi Katie

I too get hot and tingly, and a bit swollen after exercise. I did ask about it and they said it may be capillaries. They did not really know. It would make sense as the blood is pumping harder after exercise and if the capillaries are a bit narrow it would be forcing it's way through. That is how I would imagine it anyway, all be it a bit simplistic.

I also sometimes get a really bad sharp pain in my fingers or toes but I find I have better feeling after that! It does feel strange after being numb for so long.

My theory is the nerve pathways have found a way through. It feels like that and in the absence of any explanation from the medical profession I just have that to go on. That and if my bloods are reasonable (they are always a bit out but the doctors say it is due to the medication and normal for me).

I haven't yet had a proper flare. When I asked my consultant (hadn't seen her for 7 months!) how I would know if I was having a flare as I hadn't felt well in November and was a bit confused, as like you I still have the after effects and how do you tell the difference? She said to think back to when it first started and see if you felt like that. I wasn't nearly that bad so I guess it was something else that I got over.

If you are still worried ask your doctor for a blood test to see if it is normal. That will be sent to your consultant and if she is worried she will get you in earlier.

Best wishes

Lynne

[Katie18]

Thanks Lynne you are probably right about blood pumping harder after exercise. I don't think I'm having a flare as I don't feel poorly enough. I find the medical profession only seem to be interested if you are really poorly but I have other questions that would help me understand and manage my condition better.

[LynneJ Vasculitis UK Volunteer in reply to Katie18]

I know exactly what you mean. After joining Vasculitis UK and learning what I could I do find I have a better relationship with my consultants.

My impression now is that they are mainly looking out for a flare which is the dangerous bit but as for our nerve damage I don't think they know what to do. There doesn't seem to be an answer at the moment. Maybe they are as frustrated as we are.

I think the best we can do is to is to ask each other what helps and struggle through.

I was told at the beginning that it would get better for 18 months and that would be it but as I said I still get the sharp pains and can feel better in that area. That is nearly 3 years now, so I live in hope. I don't expect to get completely right but you never know. May advice is to use your 'bits' as much as possible. My left hand has improved no end, it is still numbish at the very ends but I can now type again. Yeah!!!!!!!!

[Katie18 in reply to LynneJ]

I think you are absolutely right. I go to the gym and swim as much as possible and my footdrop has gone, the pain is improving and my foot is working much better. But the never consultant seems to have no answers really.

[LynneJ Vasculitis UK Volunteer in reply to Katie18]

I am so pleased for you. Maybe we will be able to teach them something in the end. Perhaps someone will read this and do some research.

The best advice I had was from the physio. She said as it was in both feet, not to use a walking aid as I would go lopsided. I said 'But I need to hold on to something!' to which she replied ' use your husband!!!!'

Easier said than done if you are on your own, but it did work for me. I think he must have gone lopsided holding me up at first. Bless him!!!