Jean in Newcastle Posted February 22, 2020 Posted February 22, 2020 I am musing “out loud” in hopes that perhaps someone will have some insight that might help me in my fight. And it definitely is a fight. Brief synopsis: fibromyalgia for 30 plus years (which includes exercise resistance), hypothyroidism (well treated by naturopath), immunocompromised (well treated with an immunoregulator which boosts or tamps down my immune system as needed), liver disease (my numbers finally look good), type 2 diabetes (I test six times a day and eat low carb). Oh and I am wracked daily with muscle contractions which have literally pulled my knees, hips, ribs and shoulder out of place (though magnesium and zinc has made that slightly better). Obesity despite eating less than Laura Corin and much less carbs (just as a comparison to a thin healthy person on this board who shared her daily food intake awhile back). (I just looked on my carb counting app and I averaged 40 g carbs per day in the last 90 days). ANYWAY- I have been on a weight plateau for years. I dip down a bit when my sugars are better. But I literally eat the exact same things two different days in a row and one day has sugars which are in the 110 range two hours postprandial and the next day it is in the 130’s, 140’s for the same meal, same portion. Exercise makes my sugars go up. I hiked about four miles yesterday and am still in pain. My sugars went up high enough that I was unresponsive (probably 200’s)- I can’t keep awake enough when that happens in order to test but it was 130’s when it was coming down and a day later my fasting bloodsugar is still that high. So inflammatory response? I count my steps. 6500 minimum but I am trying to increase that without going into the pain and high sugars that I triggered with my hike. I also do stretches and core strengthening exercises. I will just listen to advice/comments without evaluating on the spot because it drives me crazy when people shoot down everyone’s helpful suggestions. Plus I need time to think things through and try them and possibly tweak them. 9 Quote
Laura Corin Posted February 22, 2020 Posted February 22, 2020 Sorry you are dealing with such complex issues. I would have no idea where to begin except perhaps with swimming if that doesn't bring on pain. 3 1 Quote
Scarlett Posted February 22, 2020 Posted February 22, 2020 I am sorry too Jean. I have no knowledge of what would help, but I did want to tell you what my friend was told recently by her doctor....she is the friend who spent 17 days in the hospital with an extreme case of psoriatic arthritis. Anyway she is also struggling with her weight and the doctor told her that until they get these autoimmune things under control she has zero chance of losing the weight. Although in one way she felt a little hopeless she also felt better. BeCause she had validation that it wasn’t her fault. 4 1 Quote
Lang Syne Boardie Posted February 22, 2020 Posted February 22, 2020 Jean, you have probably tried this, but just in case: Dr. Furhman's program cured my type 2. I also have autoimmune disease, and some kidney damage from lupus, and I spent a few years on steroids for an allergy-related lung problem. All systems were just...wrong...for a long time. Finally, I did develop type 2 diabetes. Low carb never worked for me. A dietician argued with me for some time that eggs and butter should not raise my blood sugar, but they do! They spike them higher than candy does. And I always feel very awful on low carb, probably because my kidneys can't handle much animal protein or fat. Eating tiny amounts and going low calorie don't help the fact that I just don't process a low carb diet very well. Dr. Fuhrman's End of Diabetes program was the only thing that ever brought my blood sugar down, tamed my autoimmune problems, and caused me to lose 10 pounds per month, nearly effortlessly. My theory is that along with the kidney problems, I must have some food allergies or sensitivities that I'd never figured out, that are just avoided by the Fuhrman plan, and there were possibly some quantities of nutrients that I wasn't getting before. I did choose the most extreme, vegan version. I also eliminated gluten and corn, because I'd already learned that those cause inflammation for me. I took Fuhrman's women's vitamin daily. It's a difficult diet, it's boring, it's expensive, and I am a slow salad eater so I feel like I'm spending hours per day just chopping veg or chewing veg. But the result is a youthful health that is honestly better than my actual youth, because I was diagnosed with lupus at 13 and never felt as energetic and strong. Exercise-wise, I chose to walk four or five miles per day. Other than that, rest seems more important than super vigorous exercise, for me. 6 1 Quote
J-rap Posted February 22, 2020 Posted February 22, 2020 I'm sorry, that must be so, so frustrating. It sounds like you're doing everything right, but genetics gets in the way. My ds is kind of over-the-top health-conscious . He researches things like crazy and reads and consults with experts, and several years ago he decided to go on a strict paleo diet for some stubborn allergies that never seemed to go away, and also for fatigue that set in every afternoon. (He had suffered both of those things throughout his childhood.) He felt like a new person after being on paleo. He's pretty strict about intermittent fasting too, so he eats all of his food within a designated window of time every day. 1 Quote
Jean in Newcastle Posted February 22, 2020 Author Posted February 22, 2020 Oh one clarification: I am celiac level gluten free. My daughter has celiac disease and while I have been gluten free for years, going the extra bit to avoid all traces and cross contamination has actually helped me a lot. 5 Quote
Carol in Cal. Posted February 22, 2020 Posted February 22, 2020 Bodies are all different. I wonder whether you might have tried the often recommended antiinflammatory foods like turmeric, ginger, etc.? Also there are supportive herbs for liver--particularly milk thistle and dandelion root--that might be helpful in general. As well, wobenzyme is supposed to be an antiinflammatory supplement, per my husband's chiro. I am cautious about that last one because I have a touch of fatty liver myself, and I'm not sure whether it could contribute, but the rest are good for me, numbers wise. I suspect that in the next 10 years we are going to learn a ton about bacterial colonies as that relates to obesity and inflammation, and that both of those problems are going to be dealt with a lot more easily once we know how to adjust gut bacteria reliably. I don't mean to belittle your goals at all, but really it sounds like you're already doing all the right things, and I hope for your sake and for the sake of many others that this intractible stuff becomes very treatable, and naturally so, sooner rather than later. 2 1 Quote
Jean in Newcastle Posted February 22, 2020 Author Posted February 22, 2020 (edited) Good thoughts. Gut bacteria is most definitely an issue. Before my immune system was brought under control I was on antibiotics for six consecutive months one year and seven consecutive months the next. Edited February 22, 2020 by Jean in Newcastle Typo Quote
Carol in Cal. Posted February 22, 2020 Posted February 22, 2020 10 minutes ago, Jean in Newcastle said: Good thoughts. Gut bacteria is most definitely an issue. Before my immune system was brought under control I was on antibiotics for six consecutive months one year and seven consecutive months the next. Probiotics are amazing these days. Recently I had to go on very strong antibiotics twice in a row two different times for serious tooth infections. The first time I didn't take probiotics and got horrible intestinal cramping during round one AND a yeast infection early in round two. The second time I took probiotics, and had no intestinal or UTI issues. I used OTC probiotics that were labelled as being for intestinal flora rehab and for female infection prevention (which included cranberry elements), and I had no issues. This was VERY convincing to me, and now I'm all about trying to build up my gut flora with substrate work--insoluble fiber, more fruits and veggies in general, adding in cooked veggies when I normally mostly eat raw ones, etc. I am really glad to have found this because having rosacea I have to take antibiotics pretty often. For me they are antiinflammatory but with these gut bacteria tradeoffs, which are now avoidable. 1 1 Quote
Arctic Bunny Posted February 22, 2020 Posted February 22, 2020 24 minutes ago, OneThoughtMayHideAnother said: Oh gosh, I am so sorry you have to deal with all this. I will make some perhaps a little out there suggestions for further research, on the slim chance they might help, but please feel free to ignore them, as I am no expert, and I would never presume it's my place to give out dietary advice. I used to be on low carb paleo and then keto diets for IBS and gluten sensitivity, but I no longer think they are optimal for me, and can now eat a more standard diet. My thinking changed when I started reading about gut bacteria and the role of resistant starch (RS). I took a very high dose probiotic (Elixa) and went on a higher RS diet. After about a month, my gluten sensitivity and most of my IBS symptoms were gone. This was life-changing. Now, I also know that, anecdotally, people have used high RS diets (or simply supplemented with potato starch) to tame type II diabetes. Studies are limited, but here is a meta-analysis: https://www.nature.com/articles/s41387-019-0086-9 I think it might be something worth looking into. RS is severely lacking in many low carb diets, but it is essential for maintaining healthy gut flora. Now, RS itself might not be enough to repopulate the good bacteria, so it might be worth it to consider a powerful probiotic or other interventions. Additionally, there is this pretty interesting model of appetite regulation proposed by Seth Roberts in his book "The Shangrila Diet". It is based mostly on mouse studies and self-experimentation, and I don't really think you need it, as you are already able to keep your food intake low, but if appetite regulation is an issue, I think SR's model/method is something to consider. Plus, it's intellectually fascinating. Anyway, again, please feel free to ignore the above and best wishes! How long and how much RS did you have to add to notice a difference? Quote
Scarlett Posted February 22, 2020 Posted February 22, 2020 1 hour ago, Jean in Newcastle said: Good thoughts. Gut bacteria is most definitely an issue. Before my immune system was brought under control I was on antibiotics for six consecutive months one year and seven consecutive months the next. Same with my friend. Her gut is so messed up from the Lymes treatment and now from the hospital stay where they were trying to get her psoriasis under control. I definitely believe it is all related. 1 Quote
Pen Posted February 22, 2020 Posted February 22, 2020 While looking at sites on Vitamin D related to Vitamin D thread and Covid19, I noticed that there’s possibly a vitamins D, K, A (maybe E?) connection for fibromyalgia and autoimmunity. Hiking 4 miles with fibro etc seems amazing!!! I am glad you can do that at all, But I am sorry you are in pain. 😢 2 1 Quote
Jean in Newcastle Posted February 22, 2020 Author Posted February 22, 2020 3 minutes ago, Pen said: While looking at sites on Vitamin D related to Vitamin D thread and Covid19, I noticed that there’s possibly a vitamins D, K, A (maybe E?) connection for fibromyalgia and autoimmunity. Hiking 4 miles with fibro etc seems amazing!!! I am glad you can do that at all, But I am sorry you are in pain. 😢 I do take high doses of vitamin D. I will check into the others. Re. my current status. I am so much better than I was even a few years ago. I have been a semi-invalid a few times, clawing my way back to functionality each time. There was a time when I could not sleep lying down (due to pain) and spent 90% of my time in my trusty armchair. I used to average 3 or 4 ER visits a year. I used to be only able to do things in 5 minute bursts, sometimes less. My daughter used to have to help me dress because I couldn't manage to even put my pants on by myself. I'm still clawing my way some days but nothing like where I was. I suppose that some might think that I should be satisfied with how far I've come but I'm not. I am very aware of how fragile my mobility is and as I age the motivation to hold on to my mobility and even increase it becomes greater. (I would have given up the hike at 2 miles in but I had to turn around and still get back to my car. 😉 My puppy Juliet motivates me to get out there and push myself. ) 12 Quote
Chris in VA Posted February 23, 2020 Posted February 23, 2020 Have you seen Brittany William's cookbooks? She uses an instant pot and air fryer to make dairy- and gluten-free recipes with whole foods. She has a webite-- " instantloss" I think. I really like her calm, kind and fun way of dealing with weight and health. 1 Quote
Soror Posted February 23, 2020 Posted February 23, 2020 I don't have any fresh ideas for you but wanted to wish you well. I know how hard you have worked and how far that you have come. 2 1 Quote
maize Posted February 23, 2020 Posted February 23, 2020 Have you looked into intermittent fasting/limited eating window? If you haven't tried it yet it might be worth seeing how your body responds. 1 1 Quote
ktgrok Posted February 23, 2020 Posted February 23, 2020 Inflammation/pain/stress/disease absolutely will spike blood sugar. (for instance, cats get so stressed by veterinary visits that we typically don't use the actual normal values to evaluate their blood glucose - have to use a higher number as the ceiling because we know the stress of the visit will spike it). And then the high blood sugar leads to high insulin which leads to fat storage. The only thing I can think might be helpful is shorter exercise, or water exercise, and fasting. Fasting is supposed to help with inflammation and possibly autoimmune stuff, and definitely with weight control. There is a new documentary on Netflix on Fasting if you want to check it out. 1 Quote
DawnM Posted February 23, 2020 Posted February 23, 2020 I cannot do high protein, Keto, any of that, I feel horrible. And I took a DNA diet test a few months ago when they had a $19 special. It was interesting that they recommended the exact same diet to me that my doctor recommended and that I had been looking at: Mediterranean. No processed/packaged foods, limited meats (and fish and poultry if you have it), whole grains, lots of fruits, veggies, avacados, only certain oils, etc..... I haven't ever gotten it in full swing, but DH and I just had a talk about food and he is on board with starting this sometime this week, after we can get a list together and shop. I have also been diagnosed with knee arthritis and psoriasis this year. I am worried I have more arthritis than just in the knee. I am nowhere near your level of auto-immune so I am not trying to compare, but just saying what we are looking at trying. 1 Quote
Hoggirl Posted February 23, 2020 Posted February 23, 2020 3 hours ago, maize said: Have you looked into intermittent fasting/limited eating window? If you haven't tried it yet it might be worth seeing how your body responds. My type-2 diabetic cousin has had great success with this. I think she uses Dr. Fung’s recommendations? She has been at it since last April, and has has lost about 90 lbs. Her blood sugar is in range now, and her doctor said she would take her off her Metformin if that holds steady at her next check. She does 5-2 fasting plus one other 16 hour fast during the week. 2 1 Quote
ktgrok Posted February 23, 2020 Posted February 23, 2020 1 hour ago, myblessings4 said: What is the title? It's just called "Fasting" I think. 1 Quote
Scarlett Posted February 23, 2020 Posted February 23, 2020 3 hours ago, DawnM said: I cannot do high protein, Keto, any of that, I feel horrible. And I took a DNA diet test a few months ago when they had a $19 special. It was interesting that they recommended the exact same diet to me that my doctor recommended and that I had been looking at: Mediterranean. No processed/packaged foods, limited meats (and fish and poultry if you have it), whole grains, lots of fruits, veggies, avacados, only certain oils, etc..... I haven't ever gotten it in full swing, but DH and I just had a talk about food and he is on board with starting this sometime this week, after we can get a list together and shop. I have also been diagnosed with knee arthritis and psoriasis this year. I am worried I have more arthritis than just in the knee. I am nowhere near your level of auto-immune so I am not trying to compare, but just saying what we are looking at trying. Do you have psoriatic arthritis? Quote
PeterPan Posted February 23, 2020 Posted February 23, 2020 On February 22, 2020 at 12:17 PM, Jean in Newcastle said: hypothyroidism (well treated by naturopath) Are they using prescription meds? Quote
Jean in Newcastle Posted February 23, 2020 Author Posted February 23, 2020 10 minutes ago, PeterPan said: Are they using prescription meds? Prescription natural thyroid (like Armor but not). 1 Quote
vmsurbat1 Posted February 23, 2020 Posted February 23, 2020 5 hours ago, DawnM said: It was interesting that they recommended the exact same diet to me that my doctor recommended and that I had been looking at: Mediterranean. No processed/packaged foods, limited meats (and fish and poultry if you have it), whole grains, lots of fruits, veggies, avacados, only certain oils, etc..... I haven't ever gotten it in full swing, but DH and I just had a talk about food and he is on board with starting this sometime this week, after we can get a list together and shop. We are following this way of eating and I can highly recommend a couple of sites worth exploring to get you started. First off: The Olive Tomato which provides a very authentic (yet modern day) look at the Mediterranean Diet as the site author is Greek but also a bonafide nutritionist. Lots of good info on that site. And secondly, for a more American (but still helpful) take, look at Oldways which outlines a number of different traditional diets (including the Mediterranean diet) with recipes and helpful hints as well as a book you can buy. They also have a mildly active FB group for encouragement and questions. I find it very motivating to pop in every couple of days. 2 2 Quote
Ausmumof3 Posted February 23, 2020 Posted February 23, 2020 Bodies can let us down ridiculously sometimes. only thing I can think of is how’s your sleep schedule? Quote
Jean in Newcastle Posted February 23, 2020 Author Posted February 23, 2020 1 minute ago, Ausmumof3 said: Bodies can let us down ridiculously sometimes. only thing I can think of is how’s your sleep schedule? My sleep schedule allows for 9 consistent hours in bed. But my sleep is often interrupted by pain and muscle cramping. Quote
Ausmumof3 Posted February 23, 2020 Posted February 23, 2020 1 minute ago, Jean in Newcastle said: My sleep schedule allows for 9 consistent hours in bed. But my sleep is often interrupted by pain and muscle cramping. Frustrating. That’s the only other thing I can think because lack of sleep can worsen the muscle pain but sounds like for you it’s the other way around. 1 Quote
matrips Posted February 23, 2020 Posted February 23, 2020 I’m not an expert by any means, but have some thoughts. If you’re plateauing but doing everything right, then your body just might need a different something for a bit to get metabolism switched up. Maybe try probiotics? Some folks use them to help digest/process foods and think it helps with weight loss. Maybe intermittent fasting? Experiment with that a little. Maybe alternate with eating more and your normal diet and fasting? Sometimes when I diet, I’m able to eat higher calories and they seem more beneficial than not for awhile. Maybe look into a different type of exercise? This article suggests different exercises affect blood sugar levels differently. https://diabetesstrong.com/why-some-types-of-exercise-can-make-your-blood-sugar-increase/ Best wishes. I hope you find something that works for you. 1 1 Quote
Jean in Newcastle Posted February 24, 2020 Author Posted February 24, 2020 42 minutes ago, Seasider too said: Magnesium? Are those levels good or might a supplement help? I take between 600 and 800 mg a day. Quote
prairiewindmomma Posted February 24, 2020 Posted February 24, 2020 I would also point you towards fasting. There are a few studies out there (I think someone here linked one one time) about how longer fasting (not the 16/8 kind) allowed the body to reset. I don’t think it will be a cure-all to your issues—but it might be a big enough boost. I did a 3 day fast recently (not intentional, post-op, long story) and it *did* re-set some things for me. I am still working on gut health. Also, fwiw, with my T1D and T2D extended family members, sugars were way better when they came off “low carb”. One did better on keto (medical level keto), another on Mediterranean. So, you might tinker more with upping fat and lowering protein and carb or by hitting mostly veg. 1 Quote
klmama Posted February 24, 2020 Posted February 24, 2020 33 minutes ago, prairiewindmomma said: I did a 3 day fast recently (not intentional, post-op, long story) and it *did* re-set some things for me. That happened to me last year when I was sick in bed for several days and had no appetite. Afterward, my appetite was significantly reduced for about a month, and I was finally able to lose weight. Weight loss continued even after my appetite returned, as long as I walked the dog. 1 Quote
DawnM Posted February 24, 2020 Posted February 24, 2020 16 hours ago, Scarlett said: Do you have psoriatic arthritis? I don't know if they are related or not. Quote
ktgrok Posted February 24, 2020 Posted February 24, 2020 Oh, and protein can absolutely be something that can spike glucose if eaten in too large an amount. Fat will not. But agreeing that fasting might be the missing item here. 1 Quote
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