Connection between onset of PMR and travel to Cen... - PMRGCAuk

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Connection between onset of PMR and travel to Central America

KaseyP profile image
38 Replies

Hello new friends. I was diagnosed with PMR in July 2017 after a 4 week acute period. I have been traveling to Honduras to do water purification projects 1-4 weeks per year since 2014. I was alerted that it might be PMR because a peer from a different state who also works in Honduras had been diagnosed with PMR 5 months earlier. Does anyone know of any connections between onset of PMR and travel in Central America or travel in other tropical countries?

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KaseyP profile image
KaseyP
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38 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

Not aware that PMR is specifically connected to South America.

Although environmental causes cannot be ruled out, it is usually more associated with hereditary factors.

It is widely recognised that it is more prevalent in Northern European countries, particularly Scandinavia, and within communities of Northern European descent. That's why it's more common in those countries, plus emigrants from there to North America and Australasia. There also seem to be clusters in Spain and Italy, but not in other Southern European countries.

KaseyP profile image
KaseyP in reply to DorsetLady

Yes. I've read info like this. I just think it's very interesting that 2 of us working thru the same agency have PMR.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to KaseyP

May be just conincidence - or stressful job and regular travelling rather than Honduras per se.

jinasc profile image
jinasc in reply to DorsetLady

DorsetLady

It is down to those Vikings, they got everywhere...................

CT-5012 profile image
CT-5012 in reply to jinasc

Heinz 57 the lot of us! 😊

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to jinasc

They sure did some paddling... amongst other things!

Baileyw06 profile image
Baileyw06 in reply to DorsetLady

My grandparents were from Czechslavakia.I have a friend that also has grandparents from the same area and she also was diagnosed with PMR.Sounds like heritary and stress!

CT-5012 profile image
CT-5012

Hi KaseyP,

Welcome to the club which we have all reluctantly joined. I'm sure that before long people with much more knowledge and experience than I will be along with help and advice. PMR is an autoimmune disease and is thought to be possibly due at least in part to stress of some kind and there is always some stress involved with travel my PMR started after a summer spent making a number of visits to various European countries. I don't think the country is relevant except that some countries are a bit more stressful than others especially if you are working with deadlines to meet. I wish you well on your journey with PMR it can be very frustrating at times but there will always be someone here with help and advice or just to talk who have had this disease.

KaseyP profile image
KaseyP in reply to CT-5012

I would agree that travel often includes stress. Thank you for your good wishes. I am loving learning from you and others on this forum

jinasc profile image
jinasc

quantisurve.com/cgi-bin/pmr...

International Survey, been running since August 2008............take a look and you can fill it in as well.

KaseyP profile image
KaseyP in reply to jinasc

Great idea. Thank you jinasc.

SheffieldJane profile image
SheffieldJane

I haven't read anything making that link but a lot of this auto immune disease is still a mystery to medical science. Theories emerge on here about periods of intolerable stress, a viral illness, bereavement or some kind of trauma that can often precede this systemic disease. My own personal theory is due to noticing a personality type in a significant number of cases. That is a person who is quite selfless and tends to sublimate their own needs for someone they care for or a cause that they care about and work hard for. It's as if the body suddenly says "enough" and demands to be taken care of.

Just my thoughts, it's late. It's interesting though. Something in the water?

KaseyP profile image
KaseyP in reply to SheffieldJane

Very interesting SheffieldJane. Thanks for your thoughts.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SheffieldJane

That's probably why more women get it then!

My friend's late husband and his mother had PMR and GCA. I have seen that several people on here have mothers who apparently had PMR. I am also fairly certain my late father had PMR but he was a bit deaf when he was told and couldn't remember what it was called, but Dr said needed steroids and to be careful because could go blind. Certainly my father hadn't done much travelling but had nursed my mother before she died and suffered the obvious stress that involved. I pushed myself for 10 years working and travelling 16 hours a day with poor health and under great stress. I might subscribe to the theory of heredity and stress as potential causal factors.

KaseyP profile image
KaseyP in reply to

It certainly does sound like stress is a huge contributor to PMR.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to KaseyP

Most certainly - and once you've got it stress does make it worse. So I never reduced if I knew I had a potentially stressful event on the horizon.

Hindags profile image
Hindags

Do Scotland and England count? I came down with PMR after traveling there. Fluish and some shoulder pain. Worse after a short weekend flight to Los Angeles.Fully presented after an hosting Thanksgiving. Couldn't move.

I do think I had overdone all of 2016. Accomplished a lot. I think it cost me.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Hindags

Well as jinasc says many of us are decended from the Vikings!

Scotland & north of England seem to have larger communities than southern England/Wales.

Emigration in previous years gives the connection with Canada, US, Oz & NZ!

CT-5012 profile image
CT-5012

I can relate to the Viking theory, my grandmother came from the northeast and her family name was Stevenson but I have no family history of autoimmune disease but one of my sons and two of my brother's children do. However we all tend to put others needs first. Perhaps we should have been more selfish...b⛵️⛵️⛵️⛵️⛵️dy Vikings! 😊

PMRpro profile image
PMRproAmbassador in reply to CT-5012

Not history of a/i disease perhaps - but I bet a member of your grandparent's, even parent's, generation had "rheumaticks". And many of those people who complained about their rheumaticks actually had PMR.

CT-5012 profile image
CT-5012 in reply to PMRpro

Thinking about that most of them died in their mid 60s so probably never got old enough. My mother was the only one who lived to her 80s but she was Welsh so probably didn't have Viking genes. 😊

PMRpro profile image
PMRproAmbassador in reply to CT-5012

PMR happens in over 50s - and probably younger too. They just don't look for it!

CT-5012 profile image
CT-5012 in reply to PMRpro

No NHS either, they would have had to pay to see a doctor and would be likely told wear and tear, you're getting older. Would have gritted teeth and carried on. Wouldn't have mentioned any problems to me a small child.

KaseyP profile image
KaseyP in reply to PMRpro

I keep hearing of people for whom it took ages to get diagnosed. With the pain I had in only a 4 week acute phase before diagnosis I can't imagine enduring that pain over a long period of time like many people have done.

HeronNS profile image
HeronNS in reply to KaseyP

Kasey, the doctor I saw today commented regarding my regular doctor's cavalier (her word) attitude that, face it, PMR doesn't kill you. To which I replied, but if you aren't diagnosed for a long time you wish it would. :D

KaseyP profile image
KaseyP in reply to HeronNS

I would agree HeronNS!!

Slosh profile image
Slosh

Vitamin D deficiency as pre-cursor??

When do must people's symptoms get bad? I started feeling ill during the summer - was caring for someone in a very large Manor House and had not got outside at all. By the end of summer I was really ill.

I seem to have Vit D absorption problems - come from European ancestors but lived in Africa basically all my life (been here just over two) - and although Zi worked out of doors, was brown as a berry and never wore sunblock, a hat or sunglasses I was diagnosed with Vit D deficiency even then.,

Never heard or came across someonecthat I can think back on now as having PMR in Africa.

Have two other autoimmune diseases and have had HUGE amounts of stress for long periods of time.

PMRpro profile image
PMRproAmbassador in reply to Slosh

If you were brown that reduces the amount of vit D made - same as a sunscreen or people of colour. Many are vit D deficient, especially when they have moved further away from the Equator.

It depends on the person - my husband had a vit D of 7 and no symptoms at all.

PMR is far less common in certain ethnicities - but it can still occur.

Gaijin profile image
Gaijin in reply to Slosh

I never used sun block, got plenty of sun from March to October and then took vitamin D supplements ( 10,000 units almost daily) during the winter months. But I still had a defficiency which caused osteomalacia and a multiple, spontaneous, pelvic fracture.I had Vitamin D defficiency way before the PMR so perhaps my PMR was due to that.

Slosh profile image
Slosh in reply to Gaijin

Thanks for your response. What ethnicity are you and did they discover any reasons for you Vit D deficiency - genetic , obesity, skin colour?

Gaijin profile image
Gaijin in reply to Slosh

Sorry Slosh, I thought I had responded to your question but somehow it wasn't posted.

I'm 3/4 European and 1/4 Japanese. I'm still in the process of figuring out what caused my vitamin D defficiency.My Parathyroid hormone is still raised , 3 months after my Vitamin D was normalized , So, my endocrinologist is considering something called normocalcemic hyperparathyroidism, but it doesn't explain why I was so resistant to vitamin D supplements. I also had my gall bladder removed, I read somewhere that that can cause one to not assimilate vitamin D as it is fat soluble, making it necessary to take a lot higher dose .

HeronNS profile image
HeronNS in reply to Slosh

I actually turned out to have too high a D level but it was as result of another autoimmune disorder. Maybe D level is a factor, one way or another.

Slosh profile image
Slosh in reply to HeronNS

That is so interesting - which autoimmune disorder was that - if you don't mind me asking.

HeronNS profile image
HeronNS in reply to Slosh

Sarcoidosis - otherwise non-symptomatic, but I have granulomas revealed through x-rays, and these are thought to actually activate Vitamin D which normally would not be activated by the body until needed.

Slosh profile image
Slosh in reply to HeronNS

Oh wow - that's interesting.

I'm amazed at just how many auto-immune diseases are out there and how common they have become.

HeronNS profile image
HeronNS in reply to Slosh

Yes, and apparently if you have one of the diseases the chances are good you'll have at least one other.

HeronNS profile image
HeronNS in reply to HeronNS

And for people who need treatment for sarcoidosis (I didn't) prednisone is the medication! It will be interesting to see what happens if and when I'm off pred altogether. Guess this is something I'll have to keep an eye on from now on.

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