I very recently found out I am hypoglycemic & I have had Rheumatoid arthritis since 1991. I've tried various pills, drugs & intravenous Rheumatoid arthritis drugs through the years all after a while have hardly any effect or relief. Just as i was giving up hope I began treatment for my hypoglycemia with a hypoglycemic diet & eating 7 tiny meals a day instead of 2 or 3 regular meals & my arthritis pain completely disappeared but the most I could keep up the food plan was for 2 months but 2 great months without any pain! The trouble is I'm a food addict & it is very hard for me to consistently eat a tiny meal so I'm back to being in pain again; of course I consulted my Rheumatologist & they were very supportive & listened but I was told that they could only provide me with drugs & they wished me the best of luck. I need professional help to cure this disease; how do I find a Rheumatologist who has the knowledge & who is willing to guide me?? I've tried all the hospitals in San Francisco & the East Bay near where I live & UCSF medical school--no luck.
While a healthy diet can certainly improve your health and make you feel better, once you have RA you have it - nothing will cure it. I know many people who have done very well by going gluten-free or eliminating certain foods that they'd found are triggers for a flare.
Very few people can stick to a restricted food plan for any length of time, so good for you for doing it for two month at a time! The brain is the most powerful organ in your body, so it's hard to fight it. Try not to beat yourself up for falling off the wagon - that's the one big thing weight watchers taught me. Pick yourself up, dust yourself off and get back on. :)
It sounds to me like you need to assemble a team of professionals to help you. No one specialist is going to have all the answers you need. Many, many patients I know use a combination of therapies, both alternative and "traditional" western medicine, so it doesn't have to be all-or-nothing. Keep seeing a rheumatologist to be monitored even if you choose not to take medication. Even if you feel better, you will need periodic x-rays and bloodwork to track disease progression.
A good rheumatologist will work with you on whatever you choose to do. You don't have to take a medication just because the doctor wants you to. However, keep the rheumie as part of your health care team, which might include an endocrinologist for your hypoglycemia, a qualified naturopath to guide your supplement choices, a nutritionist, an acupuncturist, a massage therapist, etc. Whatever you do, please, please don't try to treat yourself based on what you find out on the web or in any one book. Going the natural route isn't easy, it's a lot harder than letting the doctor make all the decisions for you.
I don't think there's any reason you can't keep seeing your current rheumie, as long as you make it clear that you're only there for periodic checkups. Aside from how you're feeling, the black-and-white evidence provided by xrays and blood work will tell you if your methods are working.
Thank you so much for your response & very supportive encouragement!! I am already doing this as you suggest. I'm just very frustrated that it is hard to get access to the Rheumatologists who are open & interested in curing this disease. The researchers seem to be far more interested in mapping the genetics & pushing the drugs (Drug companies influence--there is just more money there) than finding a cure or being open to someone like myself with important new information. So sad that Rheumatoid arthritis field is not like heart disease field where doctors & professionals & insurance companies & drug companies are interested in important in preventative, curing it as well as the pushing medication part--which don't get me wrong is extremely important!!
This is where I think stem cell and gene therapy are eventually going to help us. The reason why autoimmune diseases are so frustrating to treat is that each person's immune system is as unique as a fingerprint. No two people are going to respond the same way to the same treatment.
People can argue all day about the profit motive in drug research; I used to believe patient care was the number one motive but recently, drug companies that produce generic injectable drugs for cancer and RA treatment have simply stopped making them due to the small profit margin. Now hundreds of thousands, if not millions, of patients are at risk. Cancer patients are dying; RA patients who can't tolerate the oral form of the injectable have no alternative and face loss of quality of life, jobs, etc. I myself will have to go back on oral methotrexate when my injectable supply runs out. Luckily I CAN tolerate the pills, but I don't want to. The pills have more potentially serious side effects and interactions.
Yeah, it pisses me off! :)
FWIW, I used to have a rheumie who started out as an internist. She seemed to be more interested in the whole patient than treating specific symptoms. If all you want are periodic xrays and bloodwork, maybe consult with your primary care doctor or an internist? Either one can order those kinds of tests.
Keep me posted! I'll be interested to follow your journey.
Thanks so much for your info & support feels good not to be alone out here!! I've been posting adds at universities & with arthritis organizations & conferences trying to find someone who is doing research on the hypoglycemic/food angle etc & or someone who may want to make it their PhD dissertation, but all this is slow going, if you run across any outreach ideas let me know. Again thanks!!
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