Recovery from Lupus & RA & Fibromyalgia

I have been asked not to post on this forum because of accusations that I was somehow selling a particular diet or whatever. I have adhered to the letter that request. However I get many private messages asking me to post. Today I break that silence and if NRAS wish to delete this post that is their choice.

Today I go to a funeral of a loved neighbour who had fibromyalgia and consequently had a stroke. I believe in my heart that had she not come from a family of butchers and so lived a life of eating meat she might have lived a much healthier retirement, and certainly one that was not foreshortened. That is what my heart and mind tells me. I could not help her, and that hurts me. At 10am at her funeral this morning I will be crying inside because this is reality. For me this is about people living in needless pain.

And so I will finish with woman's video. Jill Harrington has brought her life together by ignoring the advice of doctors and rheumatologists who said "diet has no effect." As you hear her tell her own story just look at the health shining from her face and compare that with the story she tells. She has lived healthily Lupus & RA and medication free for 13 years. Then you tell me a whole food plant based diet has no effect.

Regards

Andy Swarbrick.

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  • Hi Andy,

    I wonder if it's just my ipad but there's no sound in the video?

  • I just tried it on my phone and there is sound so maybe the settings on your iPad xx

  • Hi Andy I am so sorry to hear about your friend and neighbour. I truly hope all goes well for you at the funeral. My best wishes goes out to everyone at the funeral today.πŸ’–πŸ’πŸ’—πŸΆπŸŒ·πŸŒΉπŸŒΊπŸŒΈ.

    I listen to the video and of course it makes sense we all know that what ever we eat has affected on your body. I have inflammation and I am not sure what I can eat to help with that and fibro. Any advice would be great fully welcome. For the last few weeks I have had no appetite and have lost a couple of stones nearly and I am not a large person to begin with. But the weight I put on it has gone in the 2 stone but I really don't want to lose anymore as I will get to small and then you start to look ill.😟 Take good care of yourself my friend. Jan xxx

  • Sorry to hear about the loss of your neighbour Andy. No one wants to hear about the death of friend. We are not experts in the area of fibromyalgia so here is a link to ARUK's article about diet and fibromyalgia:

    arthritisresearchuk.org/art...

    Regards

    Beverley (NRAS Helpline)

  • Thanks Beverley, as yet another auto-immune condition the NHS define fibromyalgia as a long-term condition that causes pain all over the body possibly with one or more of:

    -increased sensitivity to pain

    -fatigue (extreme tiredness)

    -muscle stiffness

    -difficulty sleeping

    -problems with mental processes (known as "fibro-fog")

    -headaches

    -irritable bowel syndrome

    In my worst days I had every one of the above apart from the IBS. My illness was labelled by my doctor and rheumy as RA, but there is so much in common with fibromyalgia that to distinguish them seems pointless to me. Distinguishing them helps doctors etc in choosing medication to suppress symptoms.

    If I may suggest, arthritisresearchuk.org/art... is a slightly better link on the subject of diet. It is good because, as NRAS do, there is an increasing emphasis on exercise. It is bad because it recommends a Mediterranean diet, and I think many people here know my opinion on that sales pitch which means people fill themselves with oils and so a heavy dose of calories in the hope they may get some omega-3's. So much healthier to stuff oneself silly with lots of omega-3 and a lot more other fabulous nutritional ingredients like fibre that you can only get from things like eating a daily bag of salad, a piece of broccoli or bag of kale.

    Here's an interesting fact for anyone interested in keeping their energy up. Did you know that per calorie, broccoli has 50% more protein than steak!

  • Where do you get your facts from Andy? Can't find those statistics for broccoli.

    Beverley

  • This particular statistic comes from Dr Joel Fuhrman's book Eat to Live, page 71. He has an online resource drfuhrman.com/learn/library...

  • The kind of protien Andy is different in meat and broccoli, so I have understood. The aminoacids differ and in order to get the same quality protien from broccoli you need to mix it with quinoa or other grains, which is as it is done in PP, so I have undetstood.😊

  • very true.

  • But I do eat an enormous amount. Broccoli is bought at very shop I do. And despite eating hummungous meals each day my doctor thinks my recovery is as much due to my weight normalising inside my BMI. At the funeral I wore a white shirt that has been sat in the wardrobe was too fat for it for I guess the last 40 years.

  • Indeed, though I would suggest it's as simple as incorrect information actually IAAE. The figures quoted are from 1986! Things have moved on a pace since then, we've far more available to us at the press of a button to check such claims are in fact correct!

  • see my reply below.

  • I don't normally bother reading blogs because as we all know they're more often than not me, me, me & ott about one thing or another. I decided because of the info shared it was worth breaking my rule because broccoli simply does not per calorie have any percentage of protein more than steak, that is unless you're happy to eat so much broccoli your teeth would be so full of green bits you'd start losing friends. Anyhow this is it, you'll note that the author who started this , in his publication of 2005 chose to quote from another publication written in 1986. This is despite more reliable up to date information from the the Gov run US Department of Agriculture info being readily available. It's always best to check such claims before sharing as fact. eathropology.com/2013/04/08...

  • Which I guess is why he updated his information in the link I provided - which also cites USDA as his source. (His web page is not a blog so you can trust it more, perhaps?)

  • So are you saying that the information above correlates with the USDA's? Could you provide a link which gives more detail please, specifically the excerpt from which you quote "per calorie, broccoli has 50% more protein than steak!"

  • I was thinking about providing a link to a blog, but then I am sure you wouldn't trust it anyway.

    Instead let us draw a line if you wish. You tell me how much more protein is in steak per calorie, and we'll leave it at that. I am not asking you to justify your figure. I won't even contest it. Just come up with a number and then we can hopefully agree to differ and move on.

  • You certainly are a master of manipulation.

  • I am not sure what to make of being called both a salesman and a master of manipulation.

    All I know is I am just a man who had horrible RA and found his way out of that hell-hole and feels obliged to tell that story to whoever is interested in hearing it.

    If using diet to aid recovery does not interest you then you are completely feel to disregard this thread.

  • Seems like you've decided for us both. Would have been nice to have the choice but hey. Bold considering you were asked not to post on this forum, yet here you are.

  • No, I did not decide for both of us. You have your views and I have mine.

    I stated at the beginning of the thread the why's and wherefore's of this thread exists. Perhaps you would like to go to the beginning and read it. Whatever, you are also free to ignore this thread. Or indeed you can report me. Whatever that is similarly your decision.

  • Thanks but that won't be necessary, I prefer not to kowtow, your post has been edited so all's well.

    I wish you continued good health & that you do eventually manage to come off meds altogether.

  • Sorry, nomoreheels, I did not understand your comment about posts being edited. What you mean is if people do not like a post they can click the drop-down button with the down arrow below a post and report it to NRAS, who may then take action like trimming offending parts out of a post, or indeed entirely deleting a post.

    Now I understand I totally agree with you. So much better for people who are transgressing forum rules to have their errors in full view. I have used the report button and an aggressive post has been deleted and I regret that action by NRAS.

    So much better, in my opinion,if the forum technology allowed NRAS to flag the parts of the post as being offensive or whatever.

  • On the contrary, not just if people do not like a post. The Report button is provided for if a member has "ANY concerns about a post you have read on the NRAS HU forum we want to know about it." ....."It might be that you feel the comment was abusive or upsetting, or it may just be that you feel it was misguided or giving incorrect information." healthunlocked.com/nras/pos...

    In this instance the post has been amended not deleted, the preferred action of admin.

  • We weep with you, andyswarbs. πŸ˜₯ We weep with you. πŸ˜”

    Gawd bless you for having courage to speak truth & touch so many lives. πŸ™

    Truth outs eventually.

    Please know our hearts πŸ’“ πŸ’“ πŸ’“ are with you. πŸ™ 😌

  • Don't know if this will be of any comfort:

    .

  • Sorry to hear of your loss .

  • But you give people false hope. There is at present NO cure for RA. Diet MAY help in some people but the only way to help stop RA getting worse is to use medications such as DMARDS and Biologics.STOP giving people false hope!!!

  • Andrew I can only speak from my own experience. Is that giving false hope?

    I am increasingly thinking that cure is the wrong word. We all clearly have a predisposition to RA and its like - and that will stay with us for life. The question is more of whether we have the tools to hold it at bay.

    Some people are happy with their medication, others prefer and even need alternatives. NRAS are increasingly stressing the importance of exercise as one technique. I use diet and very intense cardio-vascular exercise, daily Bikram Yoga. My wife thinks the exercise has been more influential in my recovery, I argue that I could not have got to the yoga without my dietary changes.

    And yes, I have used medication - and still do. My last med being MTX and currently dropped to 3 tabs with no repercussions. By July MTX should be out of my system. If I decide I need MTX or other med again in the future I will take it under medical supervision. I don't think I will need it.

    The video I posted at the beginning of this thread is by a woman I only heard about a few days ago. She is now at thirteen years free of any RA-related issues and takes no medication for it. I have not read her book yet, but according to her website she used diet. The person whose diet I follow is now five years clear of medication and symptoms.

    That's not to say changing diet is easy or trouble-free. Some people on this forum have tried and failed. Others have or are succeeding. Thus I argue for people who are very determined to follow this path - that is giving hope.

  • Kindly see if this addresses your legitimate concerns about "false hope", "cure", etc., Andrew12: paddisonprogram.com/ankylos... πŸ™

    (If you've time to hear/ read the whole, I think misperceptions may be clarified.) πŸ™ πŸ€ 🌺 🌞

  • There is no cure, true enough but so many people have benefited greatly even put their RA into remission with dietary and lifestyle modifications. I wonder if the promise the med treatment for RA couldn't just as well then be seen as giving people false hopes? We know that the meds do not work for everyone and we know there is an abundence of side effects and adverse effects of these meds and we also know that they stop working at some point. Some course of action must be taken when diagnosed but I really wonder if one size fits all protocol is really the best way to go?πŸ€”

  • Well said Andrew12. Sadly, they're not being given false hope - they're being sold it.

  • Barbara, "sold" is totally incorrect as far as the diet I follow.

    Yes you can pay, but as I have repeatedly said it is free to anyone on this forum. If you followed through the link from Kai above you would see that "free" offer also extends to anyone claiming hardship.

    I paid for my copy of the diet. That was my choice. That is the choice many people make because they know that by paying they might also help other people make similar choices.

    I have a vague hope this clears the "sold" matter up once and for all. My guess is that your assertion will be repeated by others time and time again. Hopefully you at least will be clear on the matter and perhaps you might chime in to clarify this for others as well.

    Best Regards, Andy

  • You certainly are a good salesman. I can see why they chose you.

  • I am no salesman. If I was I would be paid. This is also no sales pitch, it is just me talking because I feel my story holds some truth that others may wish to hear.

    No one chose me. RA hit me right between the eyes.

    There is no "they". Clint is a one-man band. Unless you include his wife and two young children.

  • Sorry for your loss, Andy.

    I have followed your videos (links kindly provided by Kai) and have been inspired by your story. But I would say, this is not the place to share your success. Here, we are very "clinical evidence" based, and sadly, at the present time, clinical evidence is lacking for the precise effects of diet on RA.

    For those that want to explore the issue, there is lots of scattered research out there on the effects of plant-based diets, and other, less hostile forums discussing and sharing this kind of information and encouragement.

    The negativity and spite sometimes shown here saddens me as we are all in this together, however we chose to deal with it.

  • Thank you Em13. That is a very reasoned response and thank you for the clarity and politeness in which you have expressed your opinion. As I said at the beginning of this post, exceptional circumstances caused its creation. After this thread is done I will respect your post and refrain from posting further.

    Hopefully my response to your post will encourage others hereabouts to think about following your style of post when they next put finger to keyboard.

  • Hello Em13,

    Yes I also find the hostile reactions very saddening. Did I understand you correctly that you see this forum more or less exclusively for those who have chosen the med treatment and that diatary modifications and different ways to understand better our illness do not have a place here? If so this should perhaps be made clear to all newbees and those who seek answers and experiences of others on alternative therapies? 😒 This I also find very sad. Simba

  • I don't think it should be either/or as both approaches have a place here. I take many medically prescribed drugs but am also convinced that lifestyle issues play a big role in managing these diseases. And that includes smoking, weight, exercise as well as diet. The problem comes for me when either approach is expressed too vehemently, too exclusively, or extrapolating information too loosely, as we all know how individual our particular disease is. But it would be sad if there was no place for these issues.

    I recommend Ben Goldacre's book Bad Science....

  • "Bad Science" by Ben Goldacre: amazon.co.uk/d/Books/Bad-Sc...

    .

    Ben Goldacre: Battling Bad Science (TEDGlobal 2011): ted.com/talks/ben_goldacre_...

    .

    Transcript: ted.com/talks/ben_goldacre_...

    .

  • Thank you helixhelix and Kai. Very good TED talk. Ordering the book now. I went to a local NRAS meeting on this very subject. Headlines, for instance, are a big minefield that hit each one of us every day.

  • Here is another talk by Ben Goldacre talking about publication bias for prescription medication, implicating systematic flaws in the way drugs come to market, and down our throats and how doctors are generally very unaware of these issues.

  • I find it horrific that you go to a neighbour's funeral and you sit there smuggly knowing it was her fault...if only she followed your diet plan....I'm aghast and speachless...So sad your neighbour died of a stroke & fybromyalgia may she rest in peace. My heart is with her family.

  • Hi suzannedale, and welcome to the fold. Please refrain from attributing smugness to me or anyone else, it does you a disservice. I never asked her to follow my diet plan. All I expressed were, what I felt useful tools for life, which were changes to her diet that might improve her lifestyle. This was all in response to her asking me how my arthritis was, and so I explained how I was using diet to help recovery - and that I knew (at the time) nothing about fibromyalgia.

    Oh, and on one visit I remember returning from the market with two large shopping bags full of fruit. I asked her to choose what she wanted, which she gladly did. Our local coop has a poor selection in comparison. Perhaps I was so smug I should not have done that either?

    An apology might be appropriate...

    Please tell me what I should have responded? Perhaps you would have recommended, "The meds are working" - when they clearly were not, not for me nor (in her words) for her. She was on a range of drugs including ones to address her extremely high blood pressure. She was clearly extremely worried about the medication. Hers were a complex of medications. Replacing that with diet would have been totally foolhardy, and certainly nothing I would have ever recommended - for anyone. Not even for myself.

  • " I believe in my heart that had she not come from a family of butchers and so lived a life of eating meat she might have lived a much healthier retirement, and certainly one that was not foreshortened."

    Maybe you don't realize by wrting this you are blaming her for her death? So sad. A woman died, may she rest in peace.

  • An entirely wrong interpretation and let me apologise if I have given that feeling.

    I take the view that society is to blame. Without the good access to the Internet she would not be able to hear messages like World Health Organisation negative statements on saturated fats, ie many animal foods aka meat, esp beef and processed meats eg sausages.

    For the purposes of clarity may I add that by society I mean the fact that it is very difficult to get people to understand the long-term damage people may be doing to their bodies by eating processed foods, especially meat. Butchered meat these days carries increased risks because of modern farming methods such as the use of antibiotics in animals to fatten them quickly and thus keep meat cheap at the counter.

    I have no research evidence to offer but I am increasingly finding instances of antibiotics being linked to onset of RA. Clint himself reported that he used antibiotics for 5 years in his late teens to help keep his acne at bay, after a suggestion from his father who had also used antibiotics for the same reason.

  • Hi Andy,

    Sorry for your loss.

    I believe a very big issue with all of this is that researchers have not yet been able to more clearly differentiate between the variations of RA

    Some researchers contend that RA is not a separate and distinct disease, but rather represents a common clinical endpoint for various starting points, each of which is guided by as yet poorly understood aspects of the genetic background of the affected individual

    "Depending on the trigger and the individual’s genetic makeup you get different manifestations of what we call RA, and these different presentations are lumped into one diagnosis"

    So what I see happening is that there are some people who are diagnosed with RA that may later be changed to a different diagnosis altogether or even in some cases found out to have never had RA because we don't really clearly know what that is.

    I try to ask questions of people who have gone off their meds to list as many characteristics of their disease as possible in some hope of trying to connect some dots. This may prove futile and way to random but I think it's a step in the right direction and would be less emotional in terms of understanding what's going on.

    Researchers have found distinctions with MS but haven't been able to do the same for RA. Sero positive and sero negative distinction isn't even straight forward. Some doctors say sero positive is categorized as RF+ and not anti CCP+ while my doctor and doctors at the Mayo Clinic say that anti CCP+ is sero positive. Often patients are told that anti CCP is only for diagnosis and isn't important after that and still others, like myself are told it matters a lot.

    MS subtypes arose from the need to have a common language to describe and label the clinical course of MS. Defining the terms used to describe subtypes were important not only to physicians trying to describe what was happening to their patients, but also to researchers. In clinical trials, the more homogeneous the study population, the fewer patients are needed to demonstrate the benefits of a medication.

    Futile, perhaps but if we had better distinctions of the disease that was easier to test and detect then we might be a bit more accepting of others treatment choices. Way easier said than done but a wish of mine just the same.

    Wishing you the best.

  • Thank you - a very useful contribution.

  • Hello Lucy11,

    Well written😊 Have you done research on conditions that often precedes RA breakout like hypothyroidism, adrenal fatigue, estrogen-progesterone imbalance, gluten sensitivity, D3 vit, B6 vit copper, zinc, selenium potassium deficiency ? In cases where RA only mild or haven't yet broken out it seems to me everyone would examine the his/her situation before starting the med protocol. Taking care of these underlying conditions can only have a beneficial effect in my logic, may even stop the breakout of RAπŸ€”

  • Hi Simba, very valid thought, considering that auto immune disorders could run in families. I checked aarda.org, and found this fact. Instead of being treated for ailment by ailment, if the totality is taken into account, we would all be better off, I feel. For eg, in my maternal side, my mom had RA, her father had PSoriatic arthritis. I have RA and now ITP too. If I had made the connection earlier, maybe I would not have taken live vaccine like Yellow Fever Vaccine. Because I got ITP after this vaccine. I have had a healthy 2 lakh platelet level even during my menopause . I have got my children checked and found they were very much deficient in vit d, vit b. My granddaughter too daughter is vit d deficient, in spite of playing in the sun every day. Should be a genetic problem, was the diagnosis. These 2 vitamins have a big effect on auto immune disorders as well as cancer. This was what my physician told me after I gave him my family disease details. And I have found that a vit d level below 30 brings back my joint pains, along with increased inflammation markers.

    And for me the diet I follow has made life almost normal. I have even begun cooking after almost 3 years of being in bed, when my ITP and RA together made life hell.

  • It is actually very strange that when people are informed of the adverse effects of meds usually two things are mentioned the adverse effect on liver and the grown risk for inflammations. Biologics have more dangerous adverse effects but they are very rare. So why is there no mention of the effect of immunosuppressants on thyroid function and all the symptoms that follows this? Hypothyroidism can be treated so why inthe world is this ignored by so many doctors? Knowing how important good function of this organ is for so many bodily functions?

    precisionnutrition.com/thyr...

  • Here how an very common RA med, pred affects the thyroid.

    naturalendocrinesolutions.c...

  • Hi, I would like to say that it s not what we eat, but how well we digest it, is what determines how healthy we are. I have been a vegetarian all my life, but only recently I understood that I am better off not eating some veggies. So I f a person eats meat and is able to digest it well, that person would be healthy. This holds good in people with auto immune disorders too.

    My grandfather used to say that our moods determine our digestion. I find it very correct now, and avoid eating when I have a negative emotion, be it hurt, anger, sorrow....

    In India we have a food culture that many find unique. We won't have onions on new moon day, no meat or fish etc on the 6th day, we fast on the 11th day after new moon, we eat only certain veggies on the 12th day of the new moon and so on.

    So there is A lot we don't know . Let's not generalise and hurt sentiments of some people. After all, all of us are on the same boat. And if some don't like the idea of plant based food helping some to find something relief, let's just allow them to have their way. After all, no one knows the subject so well, not much research too. So if not eating a particular food helps one, let us be happy for them. Whatever the food may be.

  • Dr. Hiromi Shinya who wrote the Enzyme Factor (https://www.amazon.co.uk/Enzyme-Factor-Diet-Future/dp/0982290039) goes on about the importance of mastication for good digestion. The book is not focused on RA, instead cancer and whilst no agreeing with everything he says I think there are some lessons for all of us to consider. Every mouthful, as I remember should be masticated 30 times, or something like that.

  • Yes, to quote my grandfather, eat your juice, and drink your food. Saliva is the most important ingredient for good digestion. Make food into juice in your mouth and then swallow, was what he would keep saying. Had we listened to the wisdom of our elders, may be we would have been healthy.

  • Hi everyone,

    In the interests of maintaining the harmony of this forum, I am turning off any more replies to this thread as I think that it has run its course. Some of the comments have become too personal. We all agree that it is very sad that Andy's neighbour has died but please this is not the place to discuss the reasons. None of us can know that for sure. Please remember that this forum is a place to share your support for one another and should not become a distressing place for all the thousands of other users when they come across such heated discussions.

    Regards

    Beverley (NRAS Helpline)

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