Newly diagnosed? Searching for an alternate to the scary-sounding drugs your doctor prescribed? That’s normal. If there’s a natural cure, spending thousands of dollars on medicines with long lists of serious side-effects doesn’t make sense. Unfortunately, there’s a long list of unscrupulous people willing to take money from anybody willing to hand it over, regardless of whether or not what they’re selling really works. Others might not be deliberately deceiving people; they just don’t realize the harm that they’re doing. Regardless of the motivation, there are many people out there trying to push alternative treatments for RA. I was surprised, then, at one conversation with a doctor:
At least with RA, the treatment is clear. Nobody’s trying to talk you into doing something different. I feel bad about all the fibromyalgia patients who have to deal with scams everywhere. I even called a few of those phone numbers to see what they were saying, and it’s just a way to take people’s money; those things won’t help. With RA, there’s nothing like that for patients to deal with.”
My rheumatologist said this. Laughing, I told her about the gin-soaked raisin cure. She’d never heard of it, but admitted with a grin, “Well, I guess if you eat enough of them, you won’t notice your pain.”
I was shocked that she had no idea what her patients face. Do doctors really not know that everybody and their brother has a sure-fire “cure” for RA, and patients face quite a battle when well-meaning family and friends present us with all the things they think we should be doing instead of following our doctor’s advice?
For everyday short-term illnesses that just need a quick round of antibiotics, not a lot of explanation is needed. People are familiar with that. RA is different. When I was faced with the need for life-long treatment, it would be great if my doctors had provided me with solid information to combat the nonsense I’m inundated with on a daily basis.
Most of us don’t share our medical information with other people, but when friends know you’ve been to the doctor again, it’s natural for them to ask, “What did the doctor say this time?” When the doctor just gave you a diagnosis of rheumatoid arthritis, the friends only hear “arthritis” and respond with some variation of, “Oh, I have that in my neck/knee/little finger; just take a motrin/ibuprofen/tylenol plus.” The first thing doctors should tell RA patients is that this is a disease in which the immune system starts attacking healthy tissue (both joints and organs), and it is nothing like the wear-and-tear arthritis that many people get as they age. The second thing RA patients need to hear is about the class of medicines called NSAIDs, and that they are not sufficient treatment for RA.
Next some well-intentioned person will say, “Doctors prescribe too many medicines without even checking how they interact with other things you’re taking. Don’t let them give you a bunch of pills.” Or my favorite: “Medicines are toxic; you shouldn’t be taking that stuff.” Doctors need to explain what “early, aggressive treatment” means. Patients need to understand that the consequence of CAM instead of DMARDs is permanent deformity. Doctors need to thoroughly explain the treatment plan for RA, explain about combination therapy, and explicitly state that all the prescriptions are (a) necessary, and (b) not going to interfere with one another. Patients needs to understand all this well enough to explain it to friends who try to dissuade them from following their treatment plan.
Family and close friends will start surfing the net, somehow certain that the physicians who’ve dedicated their lives to learning about this disease, searching for a cure (or at least effective management of symptoms), have missed something so obvious that a simple consultation with Dr. Google will clear everything up.
Patients’ email boxes are filled to overflowing with links to websites, and phones ring off the hook as friends follow up to make sure we got the information they sent us and we are now going to ignore our doctor’s expert advice in exchange for the word of a stranger with questionable credentials (if it’s on the internet, it must be true). Doctors can help their patients by knowing about the internet “cures” and teaching patients how to address those issues.
I imagine that people with other chronic diagnoses face similar issues. With RA, some of the “cures” most frequently recommended by people with no medical credentials are:
Gin-soaked raisins
Antibiotic protocol (Road Back)
Marshall protocol
Treatment for Chronic Lyme Disease
Cider Vinegar
Honey
Copper Bracelets
Bee Stings
Certo Pectin
Magnets
Diet
Then there are people trying to sell stuff:
MonaVie
Vitamins
Minerals
Various improvements on glucosamine
I’ll do some future posts with more information about some of these so-called cures (and edit this to add links to those posts as I get them up). Any you’d like to add?
∞ itis 
I’m not really surprised when docs don’t know as much as I do about my multiple conditions, how they work together to deteriorate my body in different ways than one alone would do. Even the specialists. It never fails — I ask questions about this med or that one and how it will relate to other meds I’m taking and they say it’s no problem. I produce medical printouts that say different. They look shocked. I go find another doctor. I really don’t care that they don’t know as much as I do sometimes. But it burns me up when they don’t listen and are not willing to even consider what I say. I have a great team now – -family physician, rheumy, endo, and ortho. They listen and often will go along with my requests and suggestions. I won’t go to a doc more than once if he/she dismisses what I say and insists on doing it their way. Docs should be partners, not arrogant little shits who think they know it all and breeze in and out of the appointment giving instructions without taking time to listen. Worse is when they listen and then dismiss it all as inconsequential. Now that I’m older – I like the younger docs — they are more empathetic and they don’t yet think they “know it all.”
It’s nice when we finally get a team put together who will work together and treat us how we wish to be treated. As for younger docs, I’ve always wanted someone older and more experienced than me; recently I’ve started thinking that younger doctors would be more likely to be up to date on the more current research. Funny how our perspective changes.
Just wanted to let you know I love your blog. I have psoriatic arthritis which is a different form of inflammatory arthritis. It is very similar to RA in everything except pain is not always bilateral joints with psoriatic arthritis. It can be just one elbow instead of both or which ever joint is affected. I was diagnosed about 8 years ago and it has been a constant battle trying to find meds that work or ones that will continue to work after using it a while. And best of all, finding one that doesn’t land me up in the hospital with some life threatening infection. People are so eager to say oh here take this aspirin, it always helps mine so much better. My favorite is, boy I played some ball today, my arthritis won’t let me move tomorrow. Hello, it must be nice to be able to play ball period. Rain, yep, it hurts more when it rains, but it also hurts the day before it, and the day before that, and the week entire week before that and before that and so forth. People don’t realize that while our pain gets worse with a flare, the baseline pain is always there on a daily basis. I just love when taking biologics I end up in the hospital with some horrible infection, what do friends say? Oh why are you in the hospital this time? Oh you must be doing something wrong, maybe there is something in your house, maybe it is your dogs, maybe, maybe, maybe. You just get tired of explaining the whats and whys of autoimmune. What we wake up with is not necessarily what it will be all day and what we can do one day has no relevance on what we will be able to do the next. So what do we do, we hold our heads high, plaster a smile on our face, and fight the fight. We live life as much as possible when we can, and during the times when we can’t, we plan for our next adventure. This is the life with autoimmune. Thanks so much for helping with awareness.
Thank you, deb. When I was first diagnosed, I wrote a little flyer that I could hand out to people who just didn’t understand and made uninformed comments. Recently I’ve been thinking it’s time to find and update that thing. If I ever do, I’ll share it here so anyone can use it.
we hold our heads high, plaster a smile on our face, and fight the fight. We live life as much as possible when we can, and during the times when we can’t, we plan for our next adventure
Love this!
You know WarmSocks, if you would just eat more cherries you would feel a lot better. 🙂
How could I forget the cherries? 🙂
So bloody true ! I know everyone means well when suggesting a treatment/cure , BUT , thats why we have people who are specialists in their fields and wouldn’t it be nice if it were that easy to fix !
You are very right in saying that the Rheumies should be a little more forthcoming when you are diagnosed , however , as you well know how complex this condition is I think the best plan of attack is to get the patient to self educate through various courses that are held by most Arthritis Foundations . Blogging is awesome as I also have learnt much form everyones blogs .
It is all so very daunting and ever changing .
Good luck to us all .
Andy in Western Australia
Thank God for blogs! Welcome, Andy. If you have a blog, feel free to leave a link.
I’ve learned way more about autoimmunity the internet than I have from my doctors. I know they don’t have time to do all the education we need at our appointments. Some doctors have started making YouTube videos and referring patients there. Others have brochures to hand out. It would be nice to be given a starting point. Everyone offers diabetes education classes; nobody offers autoimmune arthritis awareness classes.
Dance around a willow tree at midnight–that’ll relieve that pesky arthritis pain every time! I’m surprised you didn’t know that, Socks! 😉
Great post, and true. I’m looking forward to your follow-ups.
Willow tree – ah, yes. The aspirin-willow bark connection 🙂
The follow-ups will take a while. One will go up Thursday. The others aren’t for at least a couple weeks. Have you ever read John MacDonald’s The Girl, the Gold Watch, and Everything? Sometimes I’d really like to have that watch.
… but have you tried standing on your head, rubbing your tummy, wiggling your ears, and farting sparks? I heard from my Aunt Tilly’s best friend’s third cousin that this was a sure-fire cure! 😉
I knew that if we all put our heads together we could figure this out. Now we’ll all be cured!
You can’t totally dis natural cures. Yes there is a lot of bogus information out there but there are also things that you can do to help control inflammation through diet. I known this as fact as I have lived with this diseasenfor thirty years. The key is figuring out what wrks for you as this is a very complex disease with, I believe, many different causes. So yes, get the help you need medically to get things under control but become your own detective, work out your own specific triggers and research other options. Your doctor is not going to do that for you.
You packed a lot in a short little comment. Very impressive. A full response will probably be it’s own post, so I’ll keep it short right now. I agree with a lot of what you said. The problem is well-intentioned but misinformed people who tell us that if we’d only do ___, we’d be cured. Diet can help with symptoms, but the disease is still there. It doesn’t go away like a headache goes away with a couple Tylenol. Absolutely, diet is important!
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One of my pet peeves is when people insist that stopping all medications and going “natural” with herbs is the solution to, well, any health problem. Because herbs of course never have nasty side effects. They totally ignore the fact that many herbal remedies can interact with each other in negative ways and/or have just as nasty of side effects as the drugs that come from laboratories. And if you’re adding herbal medicines and supplements to the meds your doctor prescribes, they can interact with those meds so they’re less efficient.
I think I’m ranting … sorry! 🙂
This is my True Story of How I Cured Myself. I call it, I went from a Legal Drug User Zombie to a Healthy, Fit Sexy Woman! No doctor can cure any illness they just give you drugs that make your pains dormant for a few days or weeks and the pain comes back and keeps eating you inside. All drugs have serious side effects that damage all the organs in the body. The legal drug Lords now days are the Pharma companies that have to keep inventing and producing drugs to have investors that get millions including the gov. the doctors, hosptials and etc. in the Millions. If doctors cured anyone they would all go broke, including pharma co, gov, investors, etc, etc. This is a NO, NO! The definition of the word Medicine is something that cures. No drug cures anything. I Beleive that there is Healing in Nature. But No Doctor is going to agree with this or they will lose their patients and go broke! They will tell you, “Do Not read the side effects or stop taking this medication” or beleive Natural Cures will heal you,.. you have a serious disease and have to take the “medicines” I give you for the rest of your life! Yea right, until your insurance runs out or you die.! They want to keep you hooked and even refer you to their other doctor friends for all the other diseases that you develope caused by the side effects of the drugs he’s giving you, that will give you more drugs with side effects that will develope another disease. It keeps going until you got every disease in the book. You keep getting worse and like a zombie hooked on drugs and loving your doctors that are trying to help you and save your life. And then you need, an operation, or something cut out! God gave us all the plants, herbs and spices to heal ourselves of all diseases. I got real sick with R.A., which they say has no cause or cure, then as years went by I developed Lupus, High Blood Pressure, Colesterol, bad circulation, inflammation, Diabetes, using insuline 3 times a day, depression, gain weight and got really fat, and for 13 years suffered like Hell so much pain that I even wanted to die. Realizing that I was getting sicker and all the drugs that I was taking, 3 for blood pressure, 1 for colesterol, 3 for pain, 1 for Lupus, another for stomach ulcers due to the drugs, insuline 3 times a day for diabetes and 1 IV was not making better, but worse each day. I got so depressed, so tired of being sick and tired, that I decided to read and research all I could about R.A. and all the Natural Cures, etc. So to make the story short I took the bull by the horns as they say, through away all Drugs and went completly Vegetarian, with only fresh tuna, salmon for fish for protein, No Dairy products, no additives, and eat only salads, vegtables, and fish. Bought a juicer and started jucing in the morning veggies and some fruit. Lunch a big mixed salad with vinager and pure Virgin Olive oil and my own veggie soup without additives for dinner. After 7 do not eat anything. And drink alot of water all day and night. No coffee, juices, or anything except filtered water. Buy a filter. Add drops of PH to your water. Read about PH. I bought Omega 3, Turmeric, Cod Fish Liver oil, Green Tea Extract, Co Q-10, 1000 Vit C and I started feeling better and better as the days went by, (had headache the first 3 days, for I stopped drinking Coffee, was addicted to it and to Carbs, sugar, etc.) I lost the weight and now feel great and doing all the things I use to dream of doing, walking, excercising, talking Zumba classes, riding my bike, dancing and I feel alive and full of energy and well. Bad foods is a killer and people are getting all kind of diseases eating junk foods, meats, processed foods. All that is processed, has added antibiotics, hormones, pesticides, and things that poison the body slowly. Read all labels and go to Youtube and see Videos on how they treat animals in farms and proccess the meat you eat. Do not buy anything in a Supermarket. Go Vegetarian and go to farmers market where everything is fresh and free of pesticides and additives. Also having faith in God and his word has helped me alot and found that God does talk about good foods and bad foods in the bible. Anyways, this is my story and my cure. God gave me the strength, wisdom and gutts to Cure myself eating the right foods and taking certain supplements and herbs. There is a plant, herb or spice that does cure, even cancer. Go to Youtube and see how many people have Videos that had Cancer and Cured themselves doing what I did. Hope this gives hope to those that read it. If your drugs haven’t made you better or cured you, what do you got to lose by trying God’s given Natural Cures in the plants, herbs and spices he has freely given us? I read of this doctor that his son got sick and gave him all the best and most expensive drugs he could to heal him and even took him to the best specialist who gave him more drugs and still he was getting worse and dying, would not even open his eyes or move, and then somehow someone told him to try Natural Cures and he read and researched on this and started giving his son some kind of tea and his son got better and was well again in a few months and lived. This doctor became a Natural Health Doctor. Also see the story of Dr. Mercola on Youtube. He use to be a regular doctor and is now a Natural health doctor. There are lots of doctors that have converted to Natural Cures. Read all you can about your disease and, Natural Cures and check out these converted Doctors on YOUTUBE! Be pain free, be well, be healthy, be happy and be blessed.
Case in point.