Does anyone with any type of Vasculitis suff... - Vasculitis UK

Vasculitis UK

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Does anyone with any type of Vasculitis suffer from a relapse, flare or ill health due to stress or upset in their life?

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Ayla profile image
AylaVolunteer

Certainly, yes. Stress that is intense, or even relatively mild like long travel, usually causes a flare, especially if coupled with a viral infection which, I suspect, adds to the strain on the body.

Like many people with vasculitis, I can trace the start of my disease in 2003 to a long period of intense stress and a bad cold and cough that lasted over 6 weeks.

It would be interesting to learn if my experience is common.

LynneJ profile image
LynneJVasculitis UKVolunteer

We were involved in a hit and run accident last year and for about a month after my symptoms (mainly nerve damage and fatigue) reappeared. I had blood tests and my inflammation markers were still the same so I can't really call it a flare or relapse. My GP suggested it was because I was panicking I was not breathing properly which was bound to affect me.

This, I think ,shows the importance of relaxation and 'proper' rest. I so often sleep but do not relax and can tell the difference when I do. This 'unrestful' sleep started with the vasculitis before I took any medication.

deniseann profile image
deniseann

I can relate to the car accident situation although it was hubby that had it,in Jan,.Which at the time I was trying to cope with what everyone was calling a minor flare.

I know this sounds silly but dealing with the insurance company, picking up a viral infection and s and d ! TOTALLY STRESSED.

Now dealing major flare, having too raise medication ,sleeping for England ,even ended up back in hopital for a day to help get things under control.

ps two weeks down the line just beginning to feel as though Im coming out of the wood again .;) .

The link between stress and flares is scientifically proven ( Nov 2011)

eurekalert.org/pub_releases...

John_Mills profile image
John_MillsVolunteer in reply to

Thank you for sharing this information it is very helpful :-)

BooBoo39 profile image
BooBoo39Volunteer

Hi ... I can totally relate to the car accident,,, I was involved in an accident not my fault.... hit from behind in oct 2005.. At A & E initially whilst strapped to a spinal board i continued to shake uncontrollably for just over an hour not like me to take a long time to settle after any type of trauma/shock. Within a couple of days i was suffering severe headaches but was told it was referred pain from a neck injury. Within 5 days i had lost 85% of sight in my left eye later told this could have been optic neuritis. My sight more or less returned after about 7-8 weeks. Soon after this with daily headaches unresponsive to pain relief i developed flu type symptoms that turned very quickly to pleurisy and pneumonia. This happened twice. Whilst recovering from this and just getting back to work but feeling dreadful all the time and worn out and joint pain i collapsed at work. To find at a later date this was the first of 3 strokes i was to have . This first one some 7 months after the accident gave me severe anterograde amnesia with a loop memory time span of only 10 mins at a time this severe memory loss went on for over 3 years according to notes my family kept at the time. This was the point at which all the investigations started. Some 9 months from this point and 15 months from the accident it was ascertained i had suffered 3 strokes causing brain damage and these strokes in turn were a direct result of Cerebral Vasculitis ... Prior to this trauma /shock to my body i thankfully was very fit and healthy( this my consultant believes saved my life during the strokes alone) and i cannot think of anything else that had changed prior to me becoming ill.... We will probably never know !!!!!

Jo

John_Mills profile image
John_MillsVolunteer in reply to BooBoo39

Jo, you very clearly suffered surgical shock, physical injury, some of which was obviously unseen. There's good evidence to provide a link between the physical stress of injury or even a surgical procedure or an infection and vasculitis. All of these stimulate the immune response in slightly different ways. What is not so clear is mental "stress". Some people thrive on it, others succumb. Andrew McCleans current research at Birmingham might throw up some clues.

John

Galaxy2 profile image
Galaxy2

I attribute my vasculitis by being caused by stress as it started when I was dealing with a relationship breakup and also dealing with the financial fallout from my business going under, I lost my home, partner and business all at the same time and thats when my symptoms first started. I have spent the last few years embroiled in a legal battle and lost my house over my huge legal costs, everytime I had a stressful day in court my legs by the evening would be covered in petechie bruising, would be swollen and so painful and that would trigger off another bad phase for me. When all the stress was finally coming to an end ironically thats when I had my biggest ever flare last year which I have yet to recover from.

Kentish_Man profile image
Kentish_Man

Not always attributable to stress, but certainly sometimes yes. There are other triggers such as fatigue from trying to do too much and other triggers that I have yet to establish !!

Llinos profile image
Llinos

My diagnosis was in 2000, in 2003 my husband died from food poisoning whilst on holiday. The trauma of this event I believe caused a relapse 6 months after he died.I firmly believe that stress causes relapses

Bobs profile image
Bobs

I am new to this disease so any advise would be helpful. Only 6 months ago after a period of intense stress and overwork it came on very suddenly, with severe headaches, abdominal pain, loss of eyesight and memory, and ability to string two words together. I also have serious temperature increases which surge up through my body and make me feel like I am burning inside. After 8 weeks of being told it was migraines I was diagnosed with vasculitis. After an angiogram I was told it wasn't cerebrally based, but my symptoms seem to be similar to other cerebral postings. I have been put on steroids and reducing them but due to stress, I am sure, have had a relapse and had to increase my does again. At one stage my neurologist indicated it might be possible to recover from this disease. Can anyone tell me if this is possible or are we condemned for life?

vivdunstan profile image
vivdunstanVolunteer

Just to echo what I've already posted on Facebook, I was under enormous stress from a family situation in the months before my disease developed. I'm pretty sure that was part of the reason why I fell ill. Very extreme emotional stress which I couldn't escape from, throughout 1994. My cerebral vasculitis started in late 1994, though it wasn't diagnosed properly until late 1997.

mejulies profile image
mejulies

In one week last September, 2 of my dearest friends were admitted to hospiltal for cancer operations, both just over 50 years old and on the Friday of the same week my son broke his collar bone quite badly and that weekend my vasculitis appeared on my skin with necrosing.

That was the start for me and although I have quite a stressful job that has not affected me, just personal stress and worry.

longbank123 profile image
longbank123

My wife and myself have had a rough & rocky eighteen months, very stressful, after our daughter at 28 fell ill & was diagnosed with a rare condition, a chordoma, which is a tumour growing on the spinal chord, she has now died, a year and a half later, I fell ill and was diagnosed with vasculitis.

The link Kimbangu kindly posted shows there is unequivocal evidence of stress triggering flares although I've yet to see anything published which proves a trigger for the actual onset of the disease but I'm sure it may well be found to be responsible at least in part. Current thinking for many of the vasculitides is that it is an environmental trigger acting on a genetic predisposition which causes the disease to appear.

I know I'm not alone in believing physical and mental states can be separated and I subscribe to holistic approaches to healing (conventional and some less so) as being vital to our state of 'wellness'. If we're emotionally and/or physically run down it is likely our immune system is also in a vulnerable state and we often succumb to 'normal' ailments like coughs and colds so it seems logical to assume an overload or trigger will seize it's chance and attack when the body's defences are 'weak'.

In my case, the disease has certainly manifested itself in times of stress and emotional exhaustion and as with others here, was a major contributor in bringing about the break up of a long term relationship and resultant loss of my home plus ending my PhD research. Quite apart from the challenge of coping with the symptoms caused by the disease, the emotional cost has at times been overwhelming and as a result have been diagnosed as clinically depressed with some accompanying very dark days and nights. The cyclical nature of mental distress and physical disorder is well documented so I'm always pleased to read of clinicians who treat the patient rather than their ailments.

If any of us needed a reason to justify why Vasculitis UK is so invaluable as a portal to bring together patients and carer's alike to share experiences and where we can appreciate that none of us are alone in this constant struggle then the commendable forthright and honest responses here are are a wonderful testament to the community we all find ourselves a part of.

Healthy wishes & thanks.

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