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Vasculitis UK
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Feet

Although l have had vasculitis for many years l am newly diagnosed with HURS . I have started to have very sudden pain in my feet, so severe l cry out and can not walk , it feels like hot pokers . I wonder if this is part of the illness or a coincidence.

Many thanks

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Has anyone here had an MRI with contrast ?

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What questions do you have? I’ve had many

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Thank you l have appointment ina couple of months. I find it hard to complain about symptoms being told many times over the years that it’s all my imagination. I always wonder if what l feel is real .

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Yes. One of the most frustrating parts of autoimmune disease. Remember that you know your body better than anyone. Look at it as describing your problem symptoms because you are vital to directing the team on where you need the most help.

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Side effects - have you suffered from any unwanted side effects to the contrast agents ?

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Yes whilst admitted to hospital will all sorts of symptoms that turned out to be Sepsis I had MRI & CT scans with contrast and I suffered a severe kidney injury and ended up in a coma on dialysis.

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That is appalling. Kidney damage would be to the iodine contrast used in CT scans. Patient should be hydrated before, during and after the procedure. Before, for 24 hours, and after, another 24 hours. Crucial if any doubt as to kidney problems. IF in any doubt, hydrate. Better safe than sorry - ending in a medical mishap, mess.

So sorry and appalled at what you went through.

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Acute pain should definitely be evaluated by your medical provider. Nerve conditions are common in certain types of vasculitis

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Yes, when l look back I realise that l never put the many symptoms together, which is way it has taken over 30years to finally get a diagnosis. Now I know what l have I’ll go with a list of questions the next time I go to see specialist.

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I seem to have lost your last post while l was replying to it . To answer question I have Hypocomplementemia urticaria vasculitis syndrome diagnosis after 30years with biopsy and blood test .

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I also have HUVS and have been experiencing sharp foot pains that cause a great deal of discomfort. Vasculitis often causes nerve pain randomly. It is so bad at times that I want to cry

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Do you have any treatment for it ? It catches me so suddenly that l cry out in public before l can stop myself. This is new for me I’m never sure if all is related . Thank you .

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I personally have learned to just deal with the random pain that comes with this awful disease. I also have shortness of breath. Each person is different. You should check with your rheumatologist and see if they can suggest something to help you

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Yes thank you l will

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Could it be gout?

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I don’t think so ,different sharper shorter pain more like shingles l think .

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Short sharp pain; tingling pain, like electric shocks; burning pain; deep pain / ache in bone - cal all relate to short nerve neuropathy. Which in turn can relate to unwanted side effects to contrast agents used in MRIs and CT scans. In addition, to fluoroquinolone antibiotics even to one dose of medication.

Very often delayed reaction, from a few days to months and has been known to a two / three years following.

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Dear artists,

Someone has mentioned Kidney Damage, I know 'All About' this. My Vasculitis did Irreparable Damage to mine. I had a Kidney Transplant, in July 2013, after four years on dialysis- three times a week. What I'm going to mention now, may Very Well have NOT 'Crossed Your Mind'- any more that it had mine. It could be GOUT, no really! It IS, in actual fact, Quite Common in Kidney Patients. I am Prescribed Allopurinol, to help, combat it. Just a 'Thought', that I had, having read your symptoms, yes It IS SOMEWHAT Painful, right in- or by- the joint. Yes Gout, caused by Lactic Acid build up, that's what I'm Suggesting anyway.

Tell you what, just Humour, this Fifty-six year old man- silly old sod, that he is- and Speak to your Consultant(s), will you.

Whatever the 'Outcome' is....Have a Happy Christmas artists.

AndrewT

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Thank you seeing consultant next month

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I had this as my first symptom when my main rheumatic disease (initially RA but re-diagnosed as Sjögren’s). It was excruciating as you describe. For me it came out of the blue when I’d get out of bed to go to the toilet and yelp as if I was treading on red hot coals.

Then my entire feet and hands would suffer bolt of lightening pains. Rare pain for me now -this was 8 years ago. Now I’m told that this followed by the loss of sensation everywhere is due to small fibre sensory neuropathy (SFN) quite particular to Sjögren’s and also with some forms of Vasculitis.

My mouth and groin are the only places sometimes affected by the short sharp shock and burning pain just now - something called Trigeminal Neuralgia in face apparently and Pudendal Neuralgia in pelvis. But the pain is exactly the same for me wherever it occurs.

Lucky it’s not affecting my feet or hands anymore. Hopefully this will pass for you too but be sure to report it to your doctors.

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That is exactly how I would describe it , red hot coals . Don’t know weather to laugh or cry .

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