I was talking to a lovely lady the other day. A qualified physiotherapist, counsellor, who has worked in rheumatology, orthopaedics, general medicine and surgical, cardiothoracic, intensive care and musculoskeletal outpatient work! Phew. Oh and she has had RA. She now treats people privately in a holistic mannner and became and spiritual healer 7 years ago having become disillusioned with the NHS approach to care.
She has worked with many many people with RA, and has suffered with it herself, and she reckons there is a definite type of person. Does anyone else recognise these:
Stoicism- does not want to give up, give in (prior to and during diagnosis of RA)
Guilt complex - even mild - where you think if something happens especially to one of your close family, it was something you could possibly have avoided or prevented?
In the past if someone has done a job for you, it's never quite as good as you would have done it?
Not prepared to just sit back and let things happen but likes to try and do things for people and have a certain sense of indispensabliity - if you arent' there to do thing, who will do it???
Do you also find you are one of those people who does everything, and the more you do the more other people expect you to??
I don't know about you but it rung a few bells with me.
She also believes that the body produces its own acidity (and therefore encourages inflammatory conditions) through things like, diet, environment temperament and this causes stresses in the body, which causes the acidity. We should apparently aim to make our bodies alkaline. Suck Lemons!!
She says our body are making us ill, so our bodies can make us better again - simplistic?? She is convinced 100% that she has "cured" her RA and has gone from someone who used to spend all day in bed and walk with crutches on her heels because or her damaged feet ( I saw pictures) to being able to lead a "normal" life, and work when she wants to.
Whaddya think? Answers on a post card....
29 Replies
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wow!!! that is so enlight.., thought provoking..., did a personalitly test once and i was efstj or somethiing... can remeber what all the letters were but e is extovert(well b4 ra!) f is feeling s is serious t is thinking but j is my downside it means judgemental,,,, bad perso social trait...... got told off once for the way I looked at a heroin addict... felt ashamed of my self...
Brill article julie xx
Yes she was fascinating to talk to and the difference in her joints was there as evidence, she had actually got better, no doubt about it... Hmmmm veeeerryy
interesting. She has used a combination of mineral supplements and diet and changed the way she thinks about things too!!!
Hello from my daughters iPad!! That is very interesting Julie before I was diagnosed I would have ticked all those boxes and was taking everyones problems on board and trying to solve them. No one can do a job as well as me!! I knew it was stress triggered mine no doubt, I have changed since and now live in the day I'm in and try to stay out of others problems and lives and not to be drawn in! It's hard as I am one of lifes bridge builders and like everything to be perfect, accepting that it's not has really helped.
Pictures...? Well, aparently if we all drink a teaspoon of apple cider vinegar a day we'll all be cured too. P'ah.
I'm happy that she found something that worked for her but am always slightly sceptical (I blame the parents - soz m&d) of such proclamations! I too recognise myself in her descriptions, but then that could be used for many other things too. Often is all comes down to your outlook on life. I am not religious and don't believe that big G has it all mapped out for us. I believe that you get what you're given and somehow with these 'positive' triats we will find a way to make it work for us...eventually! Without a doubt postiive thinking will be beneficial but it falls back to the old chestnut - if it was sooooooooooo simple then why aren't we all doing it already?!?!
Shortly after I was diagnosed I went to the docs and saw a locum gp. She read through my notes and airily stated that she didn't think I had RA at all but my problems were solely down to my Vit D def...She informed me that as it was a sunny day (in March) to get myself outside in a t-shirt for a couple of hours. Not helpful when one is all skin and bones and feels the slightest of cool breezes!! When I returned to speak to my usual gp, enraged by the thought that they'd mis-diagnosed me, she retorted that the locum doc lives in S of France and was heavliy overweight and would doubt she'd have any problems stripping off in March to absorb what little Vit D there was. She also said they wouldn't be asking her back again so I don't think she was very popular!
What I'm trying to say is that some people will always pick out a 'weakness' and work on it til you believe that is all there is to it. I don't believe all of it but changing the way we think about things could have an affect on how we feel overall. Got to be good to be positive, but then there are tons of peeps on here a hell of a lot more postive than me and they still have RA!
Sorry guys, for me I have done the holistic way and the homeopathic way. Tried diets, supplements, you name it I've tried it! Before all the 'marvellous medicine' there wasn't much on offer that helped disease control ... you did what you could to help yourself (nothing to lose!). That must have cost me thousands, from Nat Mur to Willow Bark and Green Lipped Mussel, tried and tested the lot!!!
What is interesting is that I know two people who developed inflammatory arthritis post partum and once things settled down and the hormones got back to normal the arthritis went. For me it didn't go! There are people out there who claim to be cured of RA; actually they seem to have recovered from Inflammatory Arthritis, it is not the same thing. For goodness sake, there is no cure, at the present time for RA!!
If this lady's feet were damaged (rather than just swollen and painful) the only remedy is surgery. Bones do not suddenly go from RA damaged to normal, as we all know! Sorry very sceptical ... but still very positive With you on this one Jo
Lyn x
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Have you tried a combination of Boron, and Calcium and Magnesium... just out of interest? Coupled with serrapeptase the Serra Enzyme?
Not too sure about the extent of the damage I must admit.
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Hi Julie
I take Calcium daily, prescribed as Adcal (to prevent against osteoporosis due to steroid intake), Boron and Magnesium I have taken in the past but possibly separately, can't remember! Serra I have never tried.
None of these products have been sufficiently tested for use in the treatment of an auto-immune disease. The only supplements tested are those which include the Omega 3 oils and these have been found to act well as symptom reducers but they do not act on the ongoing disease pathology. The Serra enzymes act as anti-inflammatories too but to my knowledge have not been tested for use in auto-immune disorders, Boron and Magnesium are stabilising elements that help to build up a deficiency occurring in the body. Boron can strengthen joints but I have never read that it can actually repair!
I don't blame anyone for wanting to try what's out there but unfortunately many of the claims made do not stand up to stringent testing. Often they are great money spinners for the businesses that are set up on their heels to take advantage of the thousands who are genuinely looking for help for their problems.
Also, the claims made for arthritis are in many cases exactly that ... 'arthritis'. We have an auto-immune disease not arthritis, a misnomer we have to live with on a daily basis!
Lyn x
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Hmm.... points taken, especially the distinction twixt arthritis and AI disease. I just swing from wondering to not convinced to well ..I don't know what. Perhaps like you say perhaps people just clutching at straws. I am however just as sceptical of drug companies.... who are very powerful with lots of money to control trials. Having done a degree in psychology and done research methodology etc... a research establishment funded by a drug company hypothesize to get the right outcome for the company? There are a lot of people who like yourself are having trouble finding the right combination of drugs... and as you say there is no cure... Hmm perhaps I will give up wondering and just going back to being happy ill and trustinthe NHS... Thanks for the feedback x
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Yes you are right about trials! I have done a few in my time but not without the best info I have been able to get my mitts on. A lady on the forum was offered an anti-tnf trial immediately she was diagnosed ... I was outraged on her behalf! It was a very low dose which would not have been considered as an effective treatment dose by NHS standards. She believed everything she was told unfortunately. After less than a week she claimed to be, miraculously, on the road to recovery!! I was then even more incensed.
Whilst she was fiddling about with nonsense her RA was probably in the background working up to a field day! She's not on the forum any more so I suspect things did not go quite to plan and alternative measures were needed to stem the RA.
I have been on lots of the 'right' treatment over the years but because the pattern of RA changes regularly in some people revised meds are also needed to keep up with it. My problem is I have had just about everything now, back tracking isn't really recommended as often it will simply not work. Hence the reason I am stuck and in serious need of knee replacements!
Oh boy ....
Lyn x
I tick the boxes for all those personality traits and as much as I wish it were possible, I don't think there is a simple, magic cure for RA.
I do think that we could all benefit from learning what diet and lifestyle changes work best for us. I know that I need to eat a healthier diet, lose weight, do more exercise and be kinder to myself (although how is that possible without chocolate!)
I'm sure that there are vitamin and mineral supplements that would help too but I would prefer to use them in conjunction with the more toxic drugs to get the best of both worlds.
I'm glad the lady you spoke to has found something that works for her and I hope that one day we all find the right balance of treatments for us.
I've had RA since 2007 (or at least diagnosed since then) and I actually don't tick the vast majority of those boxes. I'd also say, having met a large number of people with RA face-to-face and on line in various contexts, we're all totally different, just like our RA is!
Hummmmmmmmm...... veeeerrryy interesting....... So much to think about... so if someone is cured they didn't have RA in the first place? and I really don't think it wss a case of going suddenly from damage to better it too time. Does anyone believe our body regenerates itself over 7 (or what is the claim) years going on the presumption that we are made up cells which are dying all the time and regrowing?
Hrumphy and dismissiveness was also a personality trait she noticed! heheheh methinks I have stirrred up a hornets nest??
Does anyone know of anyone who has worked in the pharmacuetical industry who knows that certain cheap and easy treatments are pushed under thetable because they can't make any money out of them, or does this not happen in our wonderful society where everyone is out to make as much as they can when they can and sod the rest?
We all know the number of years things have to go through in trial before it gets out into the big wide world, and if there was something that could cure someone sooooooooooooo simply, do you think they would invest in it, when once you were better you would only need a small amount to top you up. No money in that. Or do you think money doesn't play any part in the drugs game?
Or shall I just shut up, if this is all getting a bit skeptical ?? Please say so.
x
No I dont think you are skeptical. I do think however you are using critical thinking which has to be a good thing surely? Going back to what causes RA and whether it can be cured I guess the trick is to stop developing in the first place. There must be a lot of different variables involved in each case ?
I think that there is a relationship between mind and body and brain.
Exactly what that relationship is and how it works is the subject of ongoing learning and research. The East and West have totally different mindsets to what it means to be a human.
I think I am inclined to believe that we are all individuals and should be treated holistically. Unfortunately we are not treated this way in the NHS. We are all made to fit one NHS protocol and policy.
I have read that there is a growing body of work being carried out in a field called Psych neuro imunology ( sorry thats a long word and Ive mis-spelt it) This field as far as I know is being carried out in many universities and is showing that what we think gets translated into chemicals that affect our body. Some studies are revealing links between the mind, brain and immune system.
We can no longer look for single answers ie I am sick because of my personality or I am sick because of my genes etc because we are all unique human beings.
I have had a lot of adversity in my life ( Prolonged childhood abuse, Bereavement of a sibling, Divorce of parents, significant and substantial health issues ie Auto immune problems for the past 20 years and therefore in my case I think that I probably was vulnerable to my immune system malfunctioning
( fundamentally what RA is) because I have endured so much stress.
I havn`t looked into it but I think that stress probably does effect RA and also
contribute to flares so I am going to try to learn some stress management techniques as well as all the other management strategies Im picking up along the way.
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What you say are very much along the lines of what this lady was saying. Especially the stress! Yes. I remember doing Neuropsychology at Uni and psychosomatic diseases and how brain functions can manifest itself into a serious diseases.. through the chemicals. Ergo the stress creates and acidity in the body, which if you are predisposed or maybe not.. i don't know, but if you are predisposed that acidity causes inflammatory conditions,which causes the RA. Now if you are stubborn enough not to believe this is the cause, you have no hope in hell of correcting the malfunction? The stress does not necessarily manifest itself in say anger or mood, but is internalised and taken on board by bodily functions and you are totally unaware of it. Good Luck x
Surely though if we've been this way all our lives (or for a greater part of it) then we'd have been ill from the outset...not years down the line??
I would definitely say, from my point of view, that if people claim to have been cured of RA then quite possibly they didn't have that particular disease in the first place. It is difficult to diagnose because the early symptoms could be any of a number of conditions. I was told that the disease could burn itself out within two years (even though I was diagnosed with RA!) so this is known to happen, well back in 1988 it was!! Better diagnostic tools should now help to ensure correct diagnosis from the outset.
Our bodies do undergo cell regeneration and much has been written on this. The three types of body cell act differently, some multiply throughout our lives continuously (skin, mouth, urinary tract), some can regenerate when required to do so (liver, kidney, ), permanent cells such as the brain cells, nerve cells and the cells of the skeletal and heart muscles do not regenerate. For this reason our bones, once damaged, do not repair.
Money is a big part of the drugs industry and huge amounts could be made from 'a cure'. It's possible that underhand dealings go on but I'm pretty sure leaks would soon spring forth!
Yes Julie I can be very dismissive ... it comes with trying just about everything going, prescribed and other, spending a lot of money in the process and still onl succeeding in having to live with with this wretched disease and the associated large amounts of joint damage!!
I'm not a physiotherapist but I am a trained counsellor and it makes not a jot of difference to this disease. I'm still not cured!!! Now I'm nearly rolling about giggling and husband and two cats are looking at me like I've totally lost the plot ... I have!!
Lyn x
Great discussion Julie
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He He He I saw this after I made my comment above Lyn. i really appreciate your experience and knowledge and depth of this god awful disease. It's always worth another look at things in a different way.
You watch those puddy tats and rolling about at your age... should be ashamed of yourself! Take care x
well well ladies miss judgemental here!! think we all have had a field day here .. taken my mind off my flare... rose hip any one......., devils claw... oh im stirring but there is evidence these can work.... devils claw gets simliar efficacy ratings to etorocoxib..........
Ha !ha ! great discussion, I decided in the beginning from diagnosis just to do exactly as I was told by conventional medicine after a particularly nasty incident with suction cups and a chinese gentleman!!! so I have, aside from the alcohol! However 3 years( I'm only a ba ba compared to some) down the road I'm considering some Rose hip I agree with Lynn they never had it if it's cured they r just in remission or pain free maybe. I firmly believe that if something makes you feel better then go ahead with it! Or as my good professor says when I ask her about devils claw, cidar vinegar etc etc, if you want to try that, go ahead, she made me choose between biologics too, as if I had a clue at the time. I have said this before and find it particularly helpful when someonesuggestsa remedy (my 83 yr old mum today suggested Greek yoghurt might help me) my standard answer is now " I ll mention that to my consultant on my next visit and see what she thinks" it works really well,
Apologies for joined up words am using daughters iPad & can't get words to space out. X
Hi Julie, only got to a certain part in your blogg when it said "she has HAD RA" that didn't sound right to me. I know they say it can burn itself out as I was told that too, am still waiting after 17yrs. In all the years I have had RA have never heard anyone say is as just gone away, especially as she was saying about her feet it sounded like some sort of miracle cure! I'm sorry but in the real world it just doesn't happen like that I wish it did.
Have not yet read all the comments but will in a bit I just couldn't wait to have my say.
you do need a positive attitude that's true, we all know that I have always tried to lead a "normal life" who in there right mind wants to be housebound all the time? nobody!
It's about finding the right balance so that the RA doesn't get the upper hand, sometimes though it will knock you off your feet but, you get back up and and try again you have to. On the other hand you can't fight it too much either as it will drive you into the ground, getting the right balance that's what we have to do.
If it was just a matter of eating certain food's or taking certain supplements that would be great but it's not. I'm not saying don't try it as it may help and if it does that's great.
I seem to have tried everything going, and still 11 operations on and more to come would love to be cured!!
Sorry I'll stop now as I could go on for ever.
wasn't on here yesterday so am just catching up.
mand xx
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Thanks for your comments Mandy. Still pondering... feeling bit down today. I have not had this thing long and I have no idea what it must be like for you and others who have had to live with it for years. I have to take my hat off to you and am respectful of your knowledge and experience. Cheers julie x
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Hi Julie, I hate it when you get one of those day's, you feel down and just can't explain why. Nothing we do seems to cheer us up, then I have a day when life just feels great, strange I know.We just have to deal with it I suppose it's so hard though at times.
Chin up Julie you'll be ok tomorrow, you have to be! your the one to cheer me up! lol
I've had RA for 12 yrs & I ticked a lot of those box's Julie!
Have tried numerous alternatives, read far too many books & still live in hope…
My latest quest is bio identical hormones, mmm, to do or not to do, lol, will finish the book first.
In the beginning I was so bad I did all the drugs then I resisted & messed about with other stuff & do regret that now as damage has been done.
I now do both & I do think they compliment each other very well, well I know in how I feel & what my bloods say. If I have to take toxic poison then at least I can control what else goes in & try & support my body
My diet alone has enabled me to loose one & a half stone & keep it off! More importantly have managed without steroids for well over a year! Before my knees were like pin cushions!
"Hrumphy"? Good word! Yup, that's a personality trait I WILL sign up to. I'm definitely hrumphy. That's about the only one, mind. As to cheap solutions being pushed under the table - methotrexate is, to quote my practice manager at the surgery, 'cheap as chips these days' and it's the one they mostly choose. The NHS can't afford to go pushing expensive drugs because they can't afford to pay for them!
yep metho, chloroquine, sulphasalazine, gold all cheap.. some times the word cheap and nasty springs to minn in more ways than one!!
That was an interesting read. "Don't eat it if it makes you sick" or could sprinkling the right essence of gnats pee on your cornflakes make all the difference? Its fine, its "natural" I think our drs must be up in arms when the next patient comes in and says I'm taking the "scented bearded woman remedy drinks" when our meds are rigorously tested, re-tested, pharmalogically and biologically, put through years of trials and marked for contraindications and someone comes in explaining that someone has got this drink that will fix it all because its "natural." So is arsonic. some people make a fortune out of this stuff and have no compassion when you cannot move and the "cure" hasnt worked. I have to say I loathe the people who laugh all the way to the bank having made peoples lives a misery.
As for the personality test thing, to be honest you could apply that to most women- certainly ones of a generation. Bearing in mind its 2:1 women to men ration and the majority get RA around the change of life it kind of fits doesn't it?! When I was first diagnosed arthritis was associated with moaning, bitter old ladies (whether thats OA or RA I don't know). In my experience people with RA are very brave and dont moan and want to take on positive messages.
Very interesting discussion, I'm way at the end of it! Just a personal comment which is that prior to diagnosis I had very extreme mood swings, was quite testy etc. After ten years of anti-TNF I'm much calmer - but also older!
Swings and roundabouts I suspect
Yes me too, awfully moody. Now I am so even tempered I suprise myself...! Like you say, perhaps it comes with age,but my ol Psychology lecturer always said that old cantakerous people, don't become cantakerous when they are old, but have always had that personality trait but we become less inhibited?? Don;t know what that's got to do with the price of cheese
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I think our drs must be up in arms when the next patient comes in and says I'm taking the "scented bearded woman remedy drinks" when our meds are rigorously tested, re-tested, pharmalogically and biologically, put through years of trials and marked for contraindications and someone comes in explaining that someone has got this drink that will fix it all because its "natural." So is arsonic. some people make a fortune out of this stuff and have no compassion when you cannot move and the "cure" hasnt worked. I have to say I loathe the people who laugh all the way to the bank having made peoples lives a misery.
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