PMR and ceramics/pottery: Having just recently... - PMRGCAuk

PMRGCAuk

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PMR and ceramics/pottery

apttony
apttony

Having just recently being diagnosed with PMR, and now on a course of Prednisolone, I find myself asking why now. As a 75 year old male, I can accept that I fall into the predominate age group, but when exploring information regarding possible causes for PMR, its all rather vague. Accepted opinions include the idea that certain genes might increase a person's susceptibility, or that there maybe some form of a an environmental trigger. As a medical layman, there is a lot of research that is way beyond me and I make no attempt to understand - that would be foolish.

However, is there something specifically relative to me? As a qualified engineer, I worked in industry all my life, but the last 30 years of my career have been in what I regard as a relatively clean and safe environment when H&S is considered - IT/software/machine and instrument control. But after retiring in 2009, I started a hobby working with ceramics and pottery, which involves clay, high temperature kiln firing, and glazes, smoke and fumes. The range of substances involved is huge, many of which are toxic and dangerous. Nine years in and I have been diagnosed with PMR.

Is there a link? Is there a significant number of ceramists who have been affected by PMR

All comments welcome

Tony

41 Replies
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PMRpro
PMRproAmbassador

I doubt it - and few of us on this forum probably have that as a part of our history!

It is an accumulation of events and factors that stress the immune system - and they are not the same for any two people probably. Even in twin studies there is nothing that suggests that. There does seem to be a seasonal factor, there does appear to be a clustering effect, both temporally and spatially which might suggest an infectious connection but nothing has been identified that is common to everyone. But the infection may have been the straw that broke the immune system's back in several people in a short time - who knows.

I envisage autoimmune disorders as a shop counter with a pile of shelves behind, stacked with boxes of symptoms. We are sent to the shop and are handed a selection of symptoms - we don't have a shopping list, we just get a selection according to the whim of the assistant. Then we get sent to the doctor: who hands out a label on the basis of what "sets" of symptoms he can see. I don't think there is that much difference between autoimmune disorders - it depends on the predominant image.

Why now? Why not?

apttony
apttony in reply to PMRpro

Hi PMRpro,

That may well be the case, but I suspect that the toxicity of some base metals, etc, that come in clay itself, and used within glazes, both in raw form, i.e. dust, and when fired, generate fumes, and the effects that they have, is not fully understood and explored. Since there are 6000+ members on this forum, I thought it would be worth while exploring if there are any other potters who might be registered here, and see what proportion that takes. If the cause for PMR remains unknown, why not explore the possiblity.

piglette
piglette in reply to apttony

Hi apttony, it may be more worth while seeing if stress causes PMR as a lot of people reckon it does or even genetic reasons. I think any research into toxicity of base metals etc could be a bit limited for the number of patients you can find with PMR. You could see if metal toxicity is linked to any auto immune disease possibly. That may give you a larger base.

ClarkB
ClarkB in reply to piglette

I have wondered about a stress/anxiety connection. I feel as if I’ve always had it, for numerous reasons and my mother suffered from anxiety, as does my son. Today I went to the eye hospital in relation to my double-vision, which I had wondered if it was caused by PMR or steroids. However, I was informed that it was a condition which should have been treated when I was a child, with ‘eyepatch’ to correct. I have been told that anxiety can cause the brain to respond to this double vision occurrence! I hadn’t even mentioned it. Anyway, now have a prism fixed on my glasses to correct it, even though I no longer have double vision, but quite a bit of distortion when I move my head!

aladymo
aladymo in reply to PMRpro

How I would love to take PMRpro to the dr with me. 😏

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

Don’t think there’s a definitive answer to “why”. Many of us have asked that, and many more will continue to do do. But as PMRpro says perhaps it should be “why not”?

On a lighter note these may give you some thoughts -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

There’s a ‘married to a David’ thread somewhere as well, as a risk factor.

Seems no logic to this illness Tony it can hit anyone! Worked with lots of chemicals over the years that were a part of my job & that's what's unknown! You are on the right forum.

That is a very interesting theory apttony. Does it make you happy and satisfied as a hobby though? If so, it should really mitigate against your body turning on itself. My pet theory is a period of unremitting stress, a bad virus, a bereavement, over work, stress at work, an operation, huge responsibility for another human being, that kind of run up to the disease. I guess it can be random bad luck though.

Hidden
Hidden in reply to SheffieldJane

That sounds just like me before I succumbed to PMR and GCA!

I belong to a pottery club here in nz. 200+ members and I'm the only one with PMR. Many have been potters all their lives but none have PMR so anecdotally there isn't a link here

apttony
apttony in reply to Angiejnz

Hi, I'm in a similar size pottery group here in the uk, though I haven't asked if anybody else has PMR yet. However, there are so many metals, oxides, glazes, etc that may or may not be used by individuals, it would be wrong to rule out a link based on membership numbers only. What sort of work do you do?

When I first went to the dr. I was in really bad shape. All pain came on pretty fast. The first question the Dr. asked me was had I been under any unusual stress. Well, My sister had just given birth to a stillborn baby (quite unexpected) and then she almost died. I went into shock and haven't been the same since then. Now, Every time I am presented with any stressful situation I go into shock. Luckily for me not to many situations have happened in the last 1yr and 9 mos.

Good Luck trying to find a cause for this happening to you.

You don’t say if you have PMR and Giant Cell Arteritis, which is what I got a year ago. I had had shingles, just before and apparently that might be related. However PMR/GCA is more prevalent among Northern Europeans so that might mean there is a genetic factor. But if your immune system is low as it can be as we age (I am 73), there is more chance of getting an auto immune disease. Doesn’t help you much but there is a study going on at Johns Hopkins University Hospital in Baltimore, U.S.A.

apttony
apttony in reply to Stella3

Hi Stella3,

Only PMR confirmed.

Lots of potential triggers, for any of scores of autoimmune

syndome/disease, including

stress, hormones, metals, food antigens, pesticides, and poisons.

Stress refers to either mental emotional or physical, all these can

create the similar effects on the body as exposure to toxins

or poison by eating, drinking, breathing, or transdermal.

You mentioned IT, even the WHO recognizes electrosmog,

and ES and EHS as a disabiity, sometimes reversible but sometimes not.

Just one example of many where the buildup is slow, over many years,

tolerance turns into intolerance, and with age, hormones change,

we hear about new skin or food allergies where no such problems

existed before.

You say you are not medically trained, but one of the problems

with autoimmune is doctors arent well trained in this rapidly growing field either,

therefore patients looking for relief/solutions turn to books and blogs.

Doctors are learning too, and they also get

PMR, and the others. I have now discovered quite a few doctors specializing in

autoimmune conditions, having or having had one themselves, having researched hashimoto thryoid for several freinds. (wrong tests, wrong diagnosis,

wrong specialist referral, etc). And doing that I also discovered

the BSEM - British Society for Ecological Medicine (BSEM),

uk doctors focusing on environmental issues.

bsem.org.uk/about-the-bsem/

Last thing I would suspect is pottery class, assuming you are in a traditional

pottery workshop setting, using only old fashioned tried and trusted tools.

(even white spirit and turps are banned at my art school except for printmaking).

You havent mentioned much more obvious potential "poisons", like prescribed drugs.

(many doctors blame statin side effects being underreported, and one

wrote a book on that too, I recommend you watch the video, takes two hours, on how things work, as opposed to how things should work. I am here not for myself

but for a freind with PMR, who changed his views after watching this video,

he is now asking doctors alot more questions, having been told to take pred 3 times

a day, instead of all at once. His GP wants him to go back on statins, not a cardio,

like dr Malhotra and 3 other cardios I could list, its a painful learning curve.

youtube.com/watch?time_cont...

Ruadh
Ruadh in reply to kate24

Superb link - Dr Aseem Malhotra- have copied to my f/b slate - hope many open and listen to the link.

Have you found Dr Malcolm Kendrick ? Dr Malhotra is on the same page as Dr Kendrick. Kendrick has a superb blog on 'What causes heart disease' - and it aint cholesterol... : -

drmalcolmkendrick.org

piglette
piglette in reply to Ruadh

If you have a chance read the Great Cholestoral Con by Dr Kendrick, really worth a read and quite amusing.

Ruadh
Ruadh in reply to piglette

Have been following for years and am an occasional commentator - l have a huge respect for Malcolm Kendrick (wish he were my doctor).

Of course, Kendrick's 'book'. No. I refuse to buy anything on-line. Once had my a/c infiltrated, very expensive! I refuse to put up any form of financial details out on the internet, bit of a bore, as would like to buy many books and certainly any authored by Kendrick. But nowadays...Ho-Hum !

apttony
apttony in reply to kate24

Hi Kate,

No, I'm not refering to pottery class, where the students are usually divorced from raw chemicals and kilns, but in a home based studio/garage/workshop, where glazes are mixed from many materials, some very toxic, and where pots/pieces are fired in a kiln, many as high as 1250 degrees C, and inevitably some fumes are emitted from the kiln, perhaps containing toxins. Even with kilns being fired out of doors, it is often possible to get smell fumes being blown as the wind changes direction.

I've always put my pmr down to stress in various situations but mainly ridiculous hours at work and a nasty fall.Work being dental nursing for 16 years working with toxic cleaning substances and of course amalgam 🤔I haven't linked that with pmr until now .I'm thinking about it but none of the other staff have it ..??

ClarkB
ClarkB in reply to Sandradsn

Over the years I have often had some of the symptoms similar to PMR which was diagnosed last January- painful shoulder, unable to move my arm. I had all the amalgam removed from my teeth nearly twenty years ago, at great expense, as I had a strong metallic taste in my mouth. I had to find a private dentist who specialised in the removal. That, with other toxins absorbed over time made me conclude that there was a connection somewhere, although I hadn’t heard of PMR until Jan. I was trying to find answers; my drs certificates for work stated ‘malaise ‘, (which didn’t go down very well), but I do feel it hasn’t arrived out of the blue after all!

Sandradsn
Sandradsn in reply to ClarkB

My dr put 'stress related illness' on my certificates!

ClarkB
ClarkB in reply to Sandradsn

I caught the school secretary in the staff room reading my certificate out to the rest of the staff. She said ‘We’ve all got malaise!’ To think she had taken it from her office to the staff room to show them when I walked in!

In the the past when I described symptoms which were similar to some I get with PMR today, (not the initial pains which prompted diagnosis and blood tests), my dr said, ‘Well you’re a mystery to me!’ I don’t think it’s a condition that some drs are overfamiliar with.

Celebrant
Celebrant in reply to ClarkB

This seems like a very unacceptable invasion of privacy. What did you do?

ClarkB
ClarkB in reply to Celebrant

The then me felt intimidated and depressed because I wasn’t well. Some of my fellow teachers weren’t understanding of my condition-one telling me to pull myself together. I suppose I was stressed as well at the time, as my son had a serious illness. I would certainly stand up for myself now, looking back. I never forgot the school secretary’s action, and was reminded of it recently when I heard that she died. She had always appeared a gentle soul until that day!

PMRpro
PMRproAmbassador in reply to ClarkB

I agree with Celebrant - patient confidentiality should extend to school personnel...

ClarkB
ClarkB in reply to PMRpro

Yes it should. Even though it was a different time, it was still out of order, and am sure similar situations occur now. People can be quite bitchy in workplaces, and often in schools from my experience.

Sandradsn
Sandradsn in reply to ClarkB

My Gp said PMR only lasts 2 years so she wouldn't put that on my last certificate.She assumed I had something else as I was over the 2 year 'cut off' by a few weeks😳I see a different GP now!

PMRpro
PMRproAmbassador in reply to Sandradsn

Delighted to hear that! Send her this link in the post as she is obviously a dinosaur:

practicalpainmanagement.com...

Sandradsn
Sandradsn in reply to PMRpro

Great article! Will print it off and post it under her door😂

PMRpro
PMRproAmbassador in reply to Sandradsn

The study was done by a top Mayo Clinc PMR/GCA expert. Just in case she sneers...

Hi. My rheumy told me it’s usually brought on by stress. Plus genetics. My mother and probably her mother had pmr. Whatever it is - it sucks!! 😞😞

When I was at college I worked with resins, and tiny pieces of fibre glass stuck on my hands, and the smell was powerful. I used to strip furniture, not bothering to open the window. Add on to that traffic fumes, cigarette smoke, hair spray products, household sprays, they must all play a part in one’s health. I have had breathing problems, and a tight chest but it didn’t occur to me to connect with PMR, but possibly it does, along with other ailments along the way! Although I felt PMR ‘suddenly ‘ appeared, I now think it had been simmering in the background for a long time.

apttony
apttony in reply to ClarkB

There are so many toxic items out there that we do not yet know what the long term consequences might be. Whilst no-one yet seems to be able to specifically to say what the root cause of PMR actual is, other than what seems to me as a lot of speculation, I'd prefer to keep an open mind and look at what might be relevant to me, hence my original post. Regards

Tony

This is most interesting. My husband often asks the same questions, I wish we could get some definitive answers. x

apttony
apttony in reply to Daisychain12

Hi Daisychain12,

When you say that 'your husband asks the same question', does that mean that either he or yourself are also potter?

Daisychain12
Daisychain12 in reply to apttony

No but I have spent many years painting in all mediums and mosaic. My dad was a senior draughtsman years ago and used to clean his drawing board with CARBON TETRACHLORIDE!!!

apttony
apttony in reply to Daisychain12

Ah, wonderful stuff, for getting things clean, but the fumes were downright lethal. :-)

Daisychain12
Daisychain12 in reply to apttony

Something like one part per million was lethal!!

I believe it is a combination of things- hormonal - thyroid removed 5 years ago due to over abundance of nodules

Physical stress- excessive international business travel

Mental stress - highly visible job that everyone thinks they can do better

Personal stress- husband disabled due to stroke/cardiomyopathy/type 2 diabetes

All of these point to one thing in my mind - Stress.

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