I am an adult and I have had vasculitis HSP in the past a couple of times since 2007.

[Phylis]

I am now experiencing excruciating burning pains in the muscles around my shoulder and legs. Is it related?

[PatriciaAnn]

Hi Phylis

One of the symptoms of HSP can be painful joints, but I don't know about burning pains in the muscles. I don't have HSP.

It is always difficult for us to decide whether something is related to our vasculitis or whether it is just "one of those things". I guess this hasn't happened before has it? Best to err on the side of caution and I'd suggest either contacting your consultant or seeing your GP.

PatriciaAnn

[Phylis in reply to PatriciaAnn]

Thank you for replying. Here is some more information.

I have been having what I think is called flitting pains since 1972. They usually attack muscles and joints and then after days or sometimes weeks just go away.

I was given Amoxicillin when I had had a chest infection for 6 weeks in Jan/Feb, and the pains in my shoulders increased then. I already had shoulder pains which came on due to over exertion in November. Perhaps the vasculitis attacked the week muscles? Now the pain is moving around my shoulder and arm areas of both arms. Today it is in both arms at the front upper arms. Also in my right collar bone and in my left index finger, plus my legs. I have no pain when I am at rest..

I also have pains in my legs and find walking difficult and getting out of a chair is very painful.

I have contacted my GP; I have only had her for the last 18 months or so. She arranged for me to have blood tests on Thursday so I will hopefully get the results tomorrow. She has also arranged an X-ray of my back which I will have next Thursday. The X-ray on my back will not sort out my legs of course.

The HSP led on to me having leg ulcers, and one of these old scars erupted into a leg ulcer about 6 weeks ago which is being dealt with by the practise nurses.

Below is what I wrote in my diary on Tues 14th May 2013

At 3.30 am I thought I would get up and go downstairs to take some painkillers because of my shoulder pain. It took me an hour to be able to get out of bed. I sat on the edge of the bed until the pain in my arms had subsided, and then stood up.

When I got to the bedroom doorway I couldn't take a step forwards or backwards for about 5 mins. It was about 4.30 am and I was able to wake my husband to help me. We somehow got me painfully and slowly downstairs safely, and rang the doctor when the surgery opened. The first lot of painkillers didn't work but after speaking to the doctor and then taking a second lot, I was able to slowly and painfully move around for the rest of the day.

Later when the doctor rang me in the middle of the day she decided to arrange blood tests and X-ray. I have not spoken to her since, but the pain has continued although not as bad as it was in the early hours of Tuesday morning. I haven't been to bed since then, but I sleep in a slightly reclining chair with raised legs which stops the inflammation forming in my shoulders.

[John_Mills Volunteer]

Quite a lot of people with Vasculitis complain of burning sensations in their legs and feet, so it just could be a symptom of your HSP. It is also very important to have regular kidney checks when you have HSP because HSP has the potential to affect the kidneys, even long after the disease seems to have died out. So as Patricia has already said it is best you contact your consultant or ask your GP for a referral.

John

[Phylis in reply to John_Mills]

Thank you John for your reply. As you will see I have replied to PatriciaAnn.

I was very interested to read what you said about other people get pains in their legs. I have a Myopathy caused by the drug Amlodipine, but only in one leg. These leg pains are in both legs above the knees and came on with the Amoxicillin.

I will take you advice and ask for a referral to the specialist.