Living with PsA and using the Social Model of Disabil... - NRAS

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Living with PsA and using the Social Model of Disability and meditation as coping mechanisms

jlt54
jlt54

Hi, I'm new here. I was not diagnosed as having Psoriatic Arthropathy (PsA) until about 20 years ago but I'm pretty sure it would explain why, back in the late 1950s, when I first started school, I couldn't sit cross-legged on the floor like all the other kids in class (and later, all the other physical things that non-disabled kids can do without effort).

Medical examinations, including frequent MRI scans, X-rays and Ultrasound scans, have uncovered a miriad of other conditions but PsA remains my main bug bear. I've been through the usual regime of medication try outs, from NSAIDs, to anti-TNFs and - most recently - Biologicals. I've also tried lots and lots of the alternatives, from visiting Shaman healers in the Amazon forest to Gong ceremonies to accupunture (on the NHS!)

With some success I've used both the Social Model of Disability and meditation as coping mechanisms. I'll write more about them at length, perhaps ...

13 Replies
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Hi jlt54, I was also the kid who couldn't sit cross legged! I'll be interested to hear about your brush with alternative treatments. I hope you are doing well now?

jlt54
jlt54
in reply to paulywoo

Hi Paulywoo,

It's nice to know I wasn't the only one. I was only four and a half years old and my teacher beat me, because she thought I was being disobedient, for not sitting on the floor. The next day my grandmother came into school and, in front of all the children, she waved her walking stick and said "If you lay another finger on my grandson, I'll give you such a beating with this!" Word spread around and I was never beaten, given the strap or caned ever again in school. And only once was I spanked (and that teacher never did that again!) I also got to sit on a stool!

My partner, for 25 years, was a Brazilian and all of the relatives in his massive family seen to be medical doctors of one sort or another. We finished six years ago but are still very close and I get updates from them about the latest PsA research and also suggestions about alternative treatments. Brazil is a very advanced country in terms of medicine (if you are rich enough to afford it). Nearly twenty years ago anti-TNF was being used as first line attack medication on PSA by Brazilian doctors. It took ten years before my Rheumy succumbed to allowing me onto it. Goodness knows what damage was caused because of the delay in using effective medication!

The Brazilians are also big on alternative or complementary therapies too. They've come up with some really wacky ideas, from shark cartilage extract through to staying with an Itapu-Guarani family in the Amazon forest and visiting a Shaman for healing (it was fun but like most of the rest, didn't "work"). I've tried Bach Flower Remedy, homeopathy, hypnosis, Alexander Technique, aromatherapy, Chinese herbs, Ayrvedic medicine and reflexology. When it comes to diets, I've tried every fad diet in the book (and some that aren't!) and nothing has ever had an impact on my PsA, positive or negative. It's all cost me a King's Ransom but I've little to show for it!

I regularly get acupuncture on the NHS, referred by my Rheumy, I get gently moved about by students at the London School of Osteopathy too, I like Gong ceremonies, I meditate on a daily basis, I permit a good friend to do Reiki on me (although I think she benefits from it more than me!) When all else fails I go back to bed with my TENS machine and a hot water bottle!

How about you? Have you tried any alternative treatments yet? Which ones are you interested in trying? Do you have psoriasis as well as PsA?

paulywoo
paulywoo
in reply to jlt54

Such a fascinating account, thanks for sharing. I wish I'd had your grandmother, she sounds like a very strong woman.

I was diagnosed with ra in 2012 although I'm sure I'd had it some time. At first I was convinced a healthy diet and exercise would help me beat it. I bought a few self help books which really didn't help at all and gulped down apple cider vinegar with honey. I also tried Epsom salt baths but unfortunately none of this made any difference. I'm now on tocilizumab which is helping somewhat as well as methotrexate injections. I'd still like to explore more alternative therapies but am very sceptical as there are so many fake treatments around which just offer costly false hope. I'd like to try acupuncture x

jlt54
jlt54
in reply to paulywoo

Hi Paulywoo,

Yes, my grandmother was a real character. She drank like a fish, smoked like a chimney, took snuff a lot and gambled away the family silver. But I loved her a lot!

I can see your logic thinking that a healthy diet and exercise would help you (it's just that it doesn't "beat" it, does it?) I'm glad the tocilizumab and MTX injections are helping you. I had a strong negative reaction to MTX, my body reacted as if it was something quite toxic.

I think you're being very wise, being sceptical of costly and fake treatments. There are a lot of gullible people out there (myself included). I have had some success with acupuncture though; I hope it works for you. Does your Rheumy offer acupuncture on the NHS?

It's always the food

Dr. McDougall

Dr. Campbell China Study

Patterson Program

Dr. Michael McGregor

jlt54
jlt54
in reply to Miapalffy5

Eh?

Great that you've retained a sense of humour jlt54! I've walked barefoot in morning dew and drunk infusions of broom and gone down to 7 stone at one point on one whacky diet but have never been as well RA-wise as the past 10 years in Biologics. I now wrestle with the side effects instead!! My attitude to alternative medicine is it seems to be a path that many of us are tempted by at some point (sometimes a dangerous path) but it's maybe an attempt to take back control over a relentless disease which can make us feel so powerless. True of me anyway!

jlt54
jlt54
in reply to Witness2

Yes, Witness2, I think you are "bang on" regarding our (or at least, my) feelings of powerlessness. I'm often asked, in hospital questionnaires, if I am satisfied with having had a say in my own treatment plan. I always answer in the affirmative but, truth be told, the consultation always takes place so quickly, I barely have time to take in what the consultant has said, I don't have time to process what she has said, formulate a question and ask it, and be receptive enough to understand her reply. This particularly applies when the "Arthritic Fog" hits my brain.

Like you, I've walked barefoot on a lawn covered in morning dew (and rose petals), during a mindfulness exercise on retreat and the memory of that often comes back to me during meditation. It is like a "safe place".

What was your experience of drinking broom like? Did it have a positive effect? I come from a farming community where people were always on the lookout for sheep eating broom (it would send them gaga!)

Witness2
Witness2
in reply to jlt54

I love the idea of gaga sheep - maybe any fleeting benefit at the time I drank broom was only delusional! It was bitter and foul by the way but recommended by a Naturopath who was ahead of his time and was already ancient himself when I was seeing him. I just couldn't maintain the regime due to having 3 children at the time who's needs took precedence. It was too expensive as well.

I recognise what you say about consultations - I go into a sort of compliant behaviour too sometimes, only realising afterwards how much more I'd liked to have achieved.

Seems like we on this thread take a pragmatic view towards conventional treatments and alternative therapies. I still get excited when I hear from someone for whom a diet or other type of intervention has worked but have had my hopes dashed too many times. I do however believe in the power of the mind to reduce stress which reduces the inflammation-causing Cytokines which cause pain. If someone I love is suffering I often get some sort of physical reaction and reducing stress in my life has helped enormously.

Thank you for your informative post. Being a true sceptic and coward I tend to stick to the western medicine path although I was persuaded to try acupuncture on an exquisitely painful shoulder many years ago. It worked for me. I could almost feel the pain drain away and it lasted long enough for the natural healing process to begin.

J

I also suffer with Psa and I have had psoriasis since two ish lol I’m 53 now also have fibo but when at school I was same hated sports at school cus it hurt but teachers always said I was making excuses. So I never moan again until my 40s when my pain got so bad. Now I pop the pills hoping they going to work would love to try something that doesn’t mean popping pills if I was brave to go without them. 🙂

jlt54
jlt54
in reply to Nuttyshirlz

Yes, Nuttyshirlz, I too would love to try something that doesn't mean popping pills but I haven't found anything yet. So I pop the pills, inject myself with the anti-TNF Biologicals, etc and "treat" myself to the nice Complementary Therapies.

Nuttyshirlz
Nuttyshirlz
in reply to jlt54

At least we will no each other as we are the ones that rattle lol . 🙂

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