What is your biggest challenge getting healthy and battling an Autoimmune Disease?
kimberlypedersen812
Posts: 9 Member
I have had Rheumatoid Arthritis since 2008 and have struggled to get it managed. Recently, I have been able to get the pain, stiffness and swelling under control through medication. Being obese, has not helped. In my effort to become healthier I have found my biggest struggle is two part. First, eating constantly (boredom, depressed, hungry) and second; not having the energy to exercise. The first, has been helped with medication from my doctor. And though I want to be able to get off as much of the medication I am on, I need to develop really good eating habits. The second struggle is the exercise. I upgraded my FitBit Charge to a Surge with the heart rate monitor. This step is helping me to see how much effort I need to exert in order to reach the fat burn, cardio or peak performance.
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Thanks for starting this group, Kimberly. I, too, have rheumatoid arthritis and Sjogren's. I just started the Whole30 Autoimmune Protocol. I did standard Whole30 a year ago, lost weight, and my joints felt great. However, I did not stick with it. I am now one week along on the stricter protocol. I do not yet see much reduction in joint pain, but edema is reduced, and I have lost 8 pounds in 6 days. After a few days of detox/migraines, I am also no longer craving food. My biggest challenge will be exercising. I have a rebounder and plan to begin to use that.3
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I am starting an autoimmune protocol - today is day 2. Thanks for sharing your success, Hiwot. It is helpful to hear for inspiration.
Question - I heard IB profin is not good on an elimination diet, but I took some for a bad headache. Anyone know if it messes with results of the diet or have an alternative way to deal with the headache?0 -
Hi, I just joined this morning at my daughter's urging. I have scleroderma sine scleroderma(scleroderma without the skin hardening), primary biliary cirrhosis, Sjogren's, Raynaud's, and GAVE (watermelon stomach). I also have a flare-up of bursitis in my right hip right now.
I have been gluten free for 7 years, and am currently grain free. My rheumatologist has put me on a low fiber diet due to the digestion issues I have due to the scleroderma. Due to the low fiber diet, I haven't really tried AIP, though I have pretty much every book about it.0 -
Hello. I have Celiac, which was under control with a gluten-free diet. Now my joints are being attacked and I'm in constant pain. My doctor suspects another autoimmune disease, and I'll be in the diagnosis process for a while. My symptoms seem most like RA. Right now, my biggest struggle is limited mobility and pain; it's keeping me from exercising or even moving much. I'm also experiencing unusual fatigue.
I'm looking into starting the AIP protocol once I've gathered enough recipes I know I can stick with it. I'd love to hear what has helped for all of you.1 -
jlowejharrinjann wrote: »Question - I heard [Ibuprofin] is not good on an elimination diet, but I took some for a bad headache. Anyone know if it messes with results of the diet or have an alternative way to deal with the headache?
I am prone to headaches, too, and got a 3-day detox headache when I just started. I took Advil Migraine twice. By day four, the headaches were gone. My assumption is that your headaches will lessen on the elimination diet. So long as you are not taking it on a regular basis, I think an NSAID for the isolated headache should be fine.
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Hi everyone, I'm glad this Group is seeing some action! It's always hard when you're suffering with these type of diseases to remember that there's others out there as well. I wanted to share some of the things that I've started to do and the results and I've been getting from those actions. I've done a lot of research with regards to rheumatoid arthritis and diverticulosis and what I kept finding were elimination diets or foods to avoid to keep the inflammation from the RA down. I tried those for a while unfortunately some of my favorite ingredients in my cooking are tomatoes and peppers. When I was finally diagnosed with endometriosis and underwent a full hysterectomy I thought things would be better and they were to start. After a few months some of the remaining problems started to rear their ugly head- headaches, and joint pain were predominate. I admit I was not really good about taking my injections on a regular basis but I've made a commitment to myself now to be so. I happened upon a video recently put out by a doctor regarding 'leaky gut'. Because of my diverticulosis my digestive system can easily get messed up and I can end up with gastroenteritis very easily. After watching the video and seeing how the good bacteria in the bad bacteria that is naturally occurring in your intestinal system functions, I realized that my system may be out of whack and it may be a result of imbalance of intestinal bacteria. The video indicated that there may be some links between headaches, anxiety, depression, inflammation, along with your general stomach issues and the ratios of good and bad bacteria in the intestines. I started taking a probiotic which my rheumatologist and general doctor recommended anyways. The probiotic that I looked for was one that had a better chance of surviving the stomach acid, had more than just a few strains of bacteria, and also handed at least 15 million or more bacteria per capsule. Now the one that I am taking is called ultimate Flora and I think it's working very well. The stomach issues were digestive issues that I've suffered for years with him of all but gone away; in other words I don't have the trouble with constipation (sorry to be gross). I'm also hoping that I can stop taking the anti-acids. Some of the other things that I am doing is consuming a product called Kefir which is a yogurt drink that has a lot more bacterial cultures in it than your traditional yogurt and not as much sugar. I've seen it in the stores recently and I've been afraid to try it until I found out what it supposed to taste like. I've tried a product by wallaby Anna product by Siggis. Both taste great however wallaby is made with whole milk and the other is made with nonfat. Nutrition wise I am really trying to focus on my fiber, protein which I was told by the doctor that did my hysterectomy the Protein helps your body heal. I'm also focusing on making sure I get enough potassium among the other nutrients. One piece of advice to anyone would be to keep trying different things until you find something that works for you. And don't be afraid to try new foods (as long as her medically OK for you)1
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One less thing that I forgot to mention was that as a result of taking the steps I am actually feeling better, I have less joint inflammation and as a side benefit I'm actually losing some weight (I do have medication that is also helping me lose weight - just want to be upfront on that one!)0
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Thanks for sharing this information, Kimberly. It confirms that I need to add prebiotics/probiotics to my regimen.0
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I'm just starting on the air, but I tried paleo a long time ago and found milk products are definitely a problem for me with causing inflammation. Large amounts of egg whites also cause instant bloating, gas, and discomfort. My calories end up lower when avoiding these and so far that seems to also be the case on the air.0
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Myasthenia Gravis is tough because the more you move during a flare, the weaker it makes you. It affects my swallowing and chewing ability, as well as my limb muscles. Trying to push through it can lead to respiratory arrest and the need for intubation/ventilation or a BiPap machine. It's a disease that refuses to give up any control!
I've had to learn to batch cook on my good days, so I have foods prepared in the freezer for when I can't cook.
After a hospitalization this Feb, I realized that I'd have to be better prepared still. The puréed food at the hospital was mainly processed corn and soy, with artificial flavorings. Both corn and soy make me flare. No wonder I was an itchy, achy, flaking mess while there!
I've had to learn to ask for help recently. I'm usually fully independent. But the past couple of months, I've relied on friends to help with food prep and housekeeping. My best friend was by for two days last week, helping to cook and purée about 2-3 weeks worth of food. We portioned it out and froze it, so if I'm re-admitted I can take it along. In the mean time, I save a lot of energy because I'm not puréeing (and cleaning up after) each meal individually. Just pop a couple of "pucks" of puréed chicken or beef in the microwave and enjoy. I've puréed veggies in batches and have a few days worth in the fridge. Sour cream to mix in to perfect the texture.
Thanks for creating this group, Kimberly!! So nice to have support from people who understand the extra challenges we face!!0 -
Wow, it is interesting to hear all of your stories. I struggled with joint pain and exhaustion for years, constantly being told that there is no way anything auto-immune was going on because my tests were negative. Finally saw a rheumatologist that said "Nope, they were wrong. There is something going on." She ran a bunch of bloodwork, XRays and an MRI or two to figure it out. In the end, I didn't stick with her because her bedside manner was awful and she didn't really listen to me about the meds she put me on. But she got the ball rolling. It has been about a year and a half since then and I have tried many meds, but am on some that mostly work. I still take Prednisone and have failed getting off it. It caused quite a bit of weight gain, which I stabilized over the past year but haven't really been able to lose. I might lose 5 pounds here and there but I keep gaining it back. I'll be pretty motivated, watch my diet and get exercising but then I'll have a flare or get sick and have to take a month off and then start over. I really wish there was a magic fix here
Anyhow, I'm glad to join this group!! 1 -
I was diagnosed with Sjogren's and RA. I was placed on a restrictive diet including NO gluten, corn, eggs, dairy, or soy. I figured I'd just go whole hog with it and do no nightshades too. It's Day 49. I'm feeling SO much better. More energy, less joint pain. A couple of months ago, I could barely walk when I got out of bed and hobbled around like a 90 year old for the first few hours in the morning and then after I had been sitting. I am just now reintroducing nightshades, so we'll see! My doctor told me I should really think about going vegan....I told him to slow down, buddy, LOL! I am going to cut back on the amount of animal products I eat, though. I did have gluten on Day 35. The next three days were torture. SO tired, depressed, joint pain. So that's one thing I won't ever reintroduce, that's for sure! I'm trying not to have to take medication and just try to heal myself with nutrition. Good luck to you all!1
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@Rp4420 kind of curious, what are you eating? I also dodge nightshades, gluten, corn, dairy, sugar and soy. Suspect histamines are my issue.
I do eat eggs n fresh fish n meat, kale, courgette, cucumber, lettuce, asparagus, cauli, bimi, broccoli, nori, almond flour n almond milk, not much else so looking for ideas.0 -
I have joined this group today after reading your posts. I was referred to a rheumatologist about 6 months ago with joint pain in knees, toes, hands and hips. I also was diagnosed with dry eyes. So far all the specific tests for RA, Sjogren's, etc have been negative except I definitely have an increasing autoimmune value. Very disheartening to know what really what is going on. I was given Plaquenil (a mild 1st level med for RA). That actually helps somewhat with the pain. I also try to make sure that I am exercising 5 days per week for at least 45mins at a time. But, my weight just stays fairly constant even though I have been tracking and staying below my recommended calorie count. I recently was put on CPAP because of my frequent sleep apneas and told by my pulmonologist that my airway is anatomically small. I apologize for all this info - but am looking to this group for advice and/or support as my ultimate diagnosis is not really determined yet. Thank you guys!1
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My RA due to Sjogren's.....and the fact that I have to constantly add water to my food, thus taking out the taste lol0
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I have GI problems and need to be on a strict diet (this was caused by medical injury). When my GI problems flare up I get skin problems. I have histamine reactions to tons of foods, further restricting my diet. I have nose pain, eye pain, trigeminal nerve pain in my face (also caused by a medical injury). I have other nerve pain as well. And joint pain. And I get attacks of pain in parts of my body that have cartilage. I have elevated rheumatoid antibody factor. We don't know what my diagnosis is. My Rheumatologist thinks it might be relapsing polychondritis. The immune system attacks the cartilage in the body. It's rare. But, it all started after misdiagnoses and medical injury because they kept wrongly prescribing meds instead of referring me to a specialist. My Rheumatologist is helping me through the medical injury. I have a neurologist as well. He says Neurogenic Rosacea. My Rheumatologist is great. My Neurologist is nice. I'm on a year long waiting list to see a GI specialist. I have six months left to my wait. I never know if doctors are going to be mean to me. I got so used to them being mean to me. And that's difficult when you are in pain and can't eat and everything is going wrong and you don't know what to do and they are just saying, "Go away". I'm so happy I have a great Rheumatologist now. It was very bad for a year. I'm doing better now. But, still sick, tired, pain, can't eat so many foods. But, I have a high pain tolerance. I have had pain conditions in my joints, cartilage, and nerves since I was 14 (I'm 38 now). And I am actually a dancer. My Rheumatologist has me avoiding meds because of the medical injuries. Some days are difficult. I felt good for a month. Then relapse. But, improving in some ways.0
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I have sjogrens, sicca, and ra. Trying a gluten, sugar, and dairy free diet to help with imflamation .0
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Hello, I'm new to the MFP thing, I stopped by to say hi Struggling with coeliac disease and hashimoto, hoping to make some progress in my diet like you guys! 0
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Hi, I have PMR ( Polymyalgia rheumatica ) which is a autoimmune disease and severe Osteoarthritis, and now because of the Prednisone I was told I have osteoporosis.
I was on 40mg Preds now down to 12mg a day. It's been almost 2 years and I put on so much weight the 1st 6 months due to Preds, I have lost some, but find while still on them it's very hard. I would love to hear more about everyone's journey and what you do to control inflammation which is the major factor for PMR .......... Hit me up for friends anyone who has PMR or are taking Preds, much appreciate any and all help.
Gentle Healing All / Dea
Thanks for creating this group, Kimberly!! So nice to have support from people who understand the extra challenges we face!!0 -
Lupus and RA here. Biggest hurdle is the fatigue with flares. Just came off prednisone so need to really watch what I eat - was 170 before pred now 179. Quit WW -- didn't really help much since instructors were not very familiar with autoimmune diseases.
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Sjögren’s, Raynauds and arthritis here. Pain and poor energy are my biggest barriers. Recently started methotrexate, which seems to be having a benefit for joint pain.0
