Dear group, I'm writing to ask you how you work on your health aside from medication. Do you use complementary or alternative measures/treatment Outside of your DMT? Have you found changing your diet to affect your health? Looking for new ways to get healthier. Any and all ideas are welcome. I should probably let you know what I'm doing. I do themsgym.com, became a vegetarian, PT twice a week, craniosacral therapy which is a long discussion in itself, and some other stuff. Looking for ways to decrease stress because I believe stress really deteriorates my health. Thanks for reading, warm wishes, Sandy
Food as medicine and other coping skills... - My MSAA Community
Food as medicine and other coping skills too
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Hi Sandy, I find sugar to be the main culprit, it instills lethargy but I love chocolate so much, I can’t stop it completely. 🍫 🤷♀️
I have to have sugar in my diet. if my levels go down i would become dizzy sometimes I have come close to passing out .I dont eat processed foods
Thanks rjoneslaw do you do anything else for your health? thanks again
themsgym, pt, and peddles
What is themsgym?
Themegym.com is a wonderful exercise and motivational program. It works for whatever level you are at. They also have free access. I’m in the paid version $35/month and use it almost every day.
Thanks!!
here is the site below they also have a free facebook page you can join
for me i started with the free facebook page then i did a trial membership and now i have a regular membership.
when you go to the site and download the exercises you'll get notices
I like the paid because there is structure and there is feed back as well
Thanks, rjoneslaw . I don't have Facebook and I went on the site but got so confused...I will have to try it again.
Hi Sukie427 You can go to youtube and look up the exercises as an alternative.
Thank you, Sandy! I'll try that.
Great! I just checked it out and there is a lot of good free stuff there on youtube. You have to scroll down a bit after the ads but it's there. LMK what you think. I find it so helpful.
Sandy, I see myself as the alternative success story. My Doc's do too, though they won't advocate my success via my means, not that they disagree with them in any way, they do acknowledge their results, as they each has seen me for many years. Looking back, (you can look my posts up to see everything), but I essentially went from years of "comatose" to DRUG/ DMT FREE, with a pharmacy $0/month budget after many years of $$$$/month, food is my medicine, the unintentional gut reset did it?, juicing to keep from slipping into the depths of deep brain fog too bad to even watch crapola TV, to killing the every night evening pain keeping me from sleeping though really, really , really tired, using cannabis "prescribed" by my neurologist, having tried every drug in his and other doctor's arsenals, to being able to hang up the cane needed for many years, on my wall like a trophy, not "cured" by any means, with lots of M.S. "gifts" that I get to keep, but relapse free after having lived through "almost every relapse including a few un-imaginable I did", to literally pushing myself to walking, still can't run, but walking a minimum of 10K steps/day, cane free, and how to handle things like the GPS bladder stops needed.....Yes, food is the answer, but not just I'll do vegetarian today, and broccoli tomorrow. It's a major commitment. I eat meat. Sugar is not my enemy. Organic is icing on the cake, which yes I like both, icing and organic. Appropriately. And, I live on a poor man's budget. I see whole paycheck 12x a year, once a day during their 12 days of cheese, when I get to taste their totally unaffordable cheeses, at a total splurge into my budget to experience cheeses way out of what I can afford, at less 50% plus less 10% with Amazon discounts. I get most for less than $3 a piece. Even though I get there at opening to grab the smallest pieces of $$$$ cheese, at a discount. Heaven is just a taste.
But I have also gone from stress worse than air traffic controllers' job life, to as stress free as I can, which has contributed to my success.
So, in short, you have the right formula. If done right. It works! I've had the best M.S. doctors money could buy. They tried their best. I sank like rock, over many years. Then I found success in simple nutrition. Now, if any one wants to teach me how to become un-poor again, where I can buy something not on sale. Let's see, Avocado's are at their annual low again this week! I can get 4 or 5 more to make.....And, let's really splurge again, the year end sale has lobster tails on sale for $3.99 each! That would go great with grilled zucchini and yellow squash with onions....I have an old long distant friend that spends that on a pack of cigarettes, from the Indian reservation, where prices are cheapest. Glad I gave up smoking decades ago. I can eat lobster tails!!! In budget. And stay healthy!!! You can too!
Hi Mark, so juicing was the one thing that works for you?
Juicing was only the start, which got me out of the years of cog fog, however, I went on from there to healthy diet.
We just got a ninja bullet IQ for Christmas do you have any suggestions? feel free to private message me😊
During my juicing days, I started first just juicing (no pulp), but that probably isn't necessary? I transitioned to blending fruits and veggies. Didn't matter, used what was on sale, or in the bargain produce rack. Too many fruits may taste great, but if your diabetic, or trying to keep weight off, you won't. I played with add ins, like seeds... Enjoy. As long as you'r not using processed foods, and you wash everything well using scrub brushes and water, yes I did even have an ozone cleansing basket I found cheap, but stopped using it after a bit, just scrub clean. That was my diet, for a couple years, except for a bit of lean meat, fish, or seafood at night, after which I promptly went into my coma. But eventually that stopped, and I then was able to just eat lots of fruits and veggies, with the bits of lean meat, fish, or seafood. To this day, that's my diet 360 days? a year. Yes, I do a pizza a couple times a year, and a bit of junk food as a treat once in a while, like potato chips. Don't crucify me for I sin! But, that's the idea. Good luck, enjoy! It does take a long time till you start noticing anything, but hopefully you will. It took me 5-1/2 years to loose the cane. Still not perfect, but I walk 10K steps a day, without one now!
Thank you! That’s great. Definitely need to incorporate more fruits and vegetables. I know people dislike it when they hear “I forgot to eat” but honestly I really don’t have much of an appetite and I do forget 🤷♀️ My boys also like making smoothies and such so we will do it together 🙂 Probably just have to experiment huh?! Did you add protein powder or anything?
Hi there, I have been following Dr. Brooke Goldner. She recommends 3/4 full of greens, 1/4 full of frozen fruit and 4 cups water and 1/4 cup flax seeds She cured herself and others of Lupus so I'm trying it. I've been having one green smoothie per day for a few days. It's going fairly well. My walking is good (but that could be weather related) and i might have lost a half pound.I will know more as the experiment continues.
Keto, fasting, and exercise give reliable and fast results. I enjoy a weekly float session when I can. The others I may not remember to do are meditation, vitamin D light, and vibration plate. I’ve restarted massage therapy. Sleep hygiene is huge for me, but that’s a conversation all it’s own. I hope you find something to try!
What is vibration plate?
The thing you stand on at the gym...there’s a home version that is promoted by Terry Wahls (sp?). They are on Amazon too.
oh ok...i see on amazon. Do you think it is beneficial?
I think it is for my legs. I’ve popped down onto the basement randomly for relief of discomfort. I would probably use it more if my bed did not have a vibration module. I can’t say it’s good for MS...just whatever is wrong with my body that makes the posterior fascia “sticky” and causes the muscles to tighten and cramp. Perhaps a roller would do better, but I don’t have all day to roll out half of my body. The vibration is in 10min sessions. I cranked it up to full tilt on the second one I ever did and did fine. I believe there’s a 30 day guarantee. There’s all sorts of exercises that you can do with it, and I do use it after whatever pitiful workout I do now 🤣 I don’t think it’s any miracle but I’m glad it’s an option.
I have a vibration function on my bed but we disengaged it so our kitties don’t get caught up in the motor. Otherwise, I have several balance boards that I forget to use (it looks like the vibration plate helps with that too)
I plan to start intermittent fasting next weekend. I have weaned myself off the one packet of Splenda in my morning coffee and will be weaned off the cream by next weekend. That way I can have my morning coffee without breaking the fast. I don't eat food until noonish anyway. Any tips on IF? I like Atkins version of a Keto diet so will get back on that soon too.What is float session? Is that just floating in a pool?
I try to remember to take my vitamin d. I go to a neuro chiropractor 1-2 times a week. I have been taking collagen powder for over a year now as I read it might have some impact on gut flora. The Beach Body brand I started with helped with my skin but I didn't feel much of a difference in my gut. I switched to the Plexxus collagen and their pink drink for gut health (not the appetite control one) 4 months ago to see if it would be better. Definitely made a difference in my hair and bowels are more regular. After 2 months I went down to half the amount of the collagen because it has a lot of Biotin. The pink drink has alpha lipoic acid in it which is supposed to be helpful for MS. I haven't been good at remembering the pink drink but keep the collagen by the coffee maker and add to my coffee. I am going to have to get a new routine when I start IF as the collagen would break my fast sooner than I want to.
Trying to get back on track with exercise. I do a lot of walking at work but need more. Unfortunately my left hip/groin/leg started hurting a week ago. I took Ibuprofen 800mg and Gabapentin 400mg three times a day for a few days and it went away but came back yesterday so started back with Ibuprofen and Gabapentin and icing. Hopefully by tomorrow it will be gone. Thinking I will continue the Ibuprofen for a week or two to keep it from coming back. Since it is my "good" side it is making getting around more difficult. Maybe vibration therapy would help. If it doesn't go away I will look into this!
I hope everyone stays healthy in 2021!!
Wish you well with intermittent fasting. I try not to eat between 6pm and 8am. 14 hours of fasting.
My tip for IF is don’t drink a bunch of water just because you’re in a fasting window and don’t look at the clock the whole time. My other tip is that is so much easier to do if you eat Atkins/keto/cv, but you’re already there 🎉 It’s called floating, float tank, sensory deprivation chamber...it’s a pod or pool filled with a few feet of super buoyant magnesium salt water. The room is body temp so if you turn the lights out, you can get the sensory deprivation benefit. There may be a float spa near you that you can check out at an intro price. There’s not a lot of studies on this, but a few show positive effects on hormones or an hour being equivalent to sleep or meditation. The other benefit for some with MS is being able to stretch without pain, and I had a lot of back and hip pain relief when I was pregnant.
I have some collagen powder also and add it to my coffee sometimes, but not if I’m doing a fast.
It’s worth a try! I’ll try anything to get more out of my day 🙌 please let us know if you find something that helps!
Exercise.
You guys are awesome. Thanks for sharing what works for you. Interesting stuff. I'm reading that the gut as 2nd brain, has a lot to do with overall health. Does anyone recommend a particular brand of vitamin D?
Nivagen brand worked to increase my blood level, and I took the 50,000iu weekly formulation. My kids take garden of life and mommy’s bliss brands, and those I trust to be super safe/clean/legit.
Wondering what is craniosacral therapy? Is that massage?
What I like about it: you stay dressed, the pressure is very light. It's hard to believe it does something but all I can tell you is I walk better afterwards and that means the world to me. I also feel very relaxed. My acupuncture doctor does it. Takes about an hour. Of course not covered by insurance but worth it to me. I go twice a week. the doctor said he can feel when the cerebrospinal fluid moves and then he goes on to the next body part to unblock it. It's kind of eastern medicine, unblocking the "chi" but also cerebrospinal fluid has to do with the nervous system, right?
Copied and pasted:
CST is noninvasive. It uses gentle pressure on the head, neck, and back to relieve the stress and pain caused by compression. It can, as a result, help to treat a number of conditions.
It’s thought that through the gentle manipulation of the bones in the skull, spine, and pelvis, the flow of cerebrospinal fluid in the central nervous system can be normalized. This removes “blockages” from the normal flow, which enhances the body’s ability to heal.
That sounds great. I haven't had a massage in awhile. I always like when they do my neck. I have alot of neck and upper back pain that goes up into my head. I should find a doctor who specializes in this. My insurance pays for massage but no one around takes insurance for payment. Chiropractor takes the insurance but not for massage. Also my spine doctor said I shouldn't do adjustments anymore due to the condition of my neck. But I want to find someone who does what your talking about.
it is a very light touch. Not massage exactly. You can barely feel the touch. All I know is it works. Definitely look up people in your area who do it and tell me what you think.
I just googled cranial sacral therapy and there are some about 40 minutes away. I'm going to make some calls next week. Thanks for the info 😀😀
so glad! How is your MS affecting you?
My muscles get so stiff. Besides that, body pain, eyesight, balance, fatigue, brain fog... I used to go to yoga before the pandemic. Since I've been bad about doing good things for myself. I need to kick myself and get in gear. I've always ate healthy my whole life. Hardly ever did fast food and don't fry food. Just saute in olive oil. Lately have needed more fruits and veggies. I'm just being neglectful. I know that's bad. I'm going to try harder like before 2020.
Hands don't work as good so I'm a slow typer. Even though, I made bracelets for all the women in my family for Christmas. I was very impressed with myself since it took while.
Hi Humbrd I relate to what you are saying about getting in gear. Not to eating healthy my whole life. That is something new for me. Do you know about MS yoga? it's called Yogamovesms and it is usually done sitting, on zoom. The woman who runs it is in Detroit. where are you?
I live in Florida, thank goodness. I can't tolerate the cold. It's been so cold here recently, makes everything hurt. I used to go to gentle yoga. I have tons of videos, just haven't been motivated. My friend got me a book for MS yoga. I can still get up and down off of the floor. But I can feel I'm getting weaker from not being active enough. I think I'm my own worse enemy. I used to be so good to myself. That is my new goal, to take better care of myself. Before the pandemic I was going to yoga twice a week and taking art classes and walking at the park. Making my fruit smoothies. Something happened this year and I got into a funk. I need to pull myself out of it.
Anti-inflammatory diet: All organic, no processed foods, NO gluten, sugar, dairy, oranges or peanuts.
It is my understanding that the DNA of both is so twisted, it no longer is recognized as food by the body. Since I don't eat peanuts anyway, I didn't bother to ask why. And too many naturopathic/Integrative Medicine doctors have said no oranges/grapefruits for me to ask why not.
very interesting. I eat lots of oranges but no juice because it's too concentrated. Hmmm. If you ever find out what's wrong with oranges, please tell me.
So you are not trying to avoid sugar?
@IFwczs I do avoid sugar. Eating plant based Whole Foods so limited ingredients. Nothing processed
Eating fruit is not part of that diet as they contain sugar. I would think this reasoning is enough not to eat oranges, but for some reason, doctors single them out.
Hmmm. interesting. If you have a source i'd like to read the material about oranges being bad for you.thanks
My source was half a dozen holistic and Integrative Medicine MDs as well as a Chinese doctor.
Thanks IFwczs So interesting. I would like to know more.
Also need to eat sweet potatoes instead of regular and no more corn. But you probably already know that.
And trust me, I miss freshly squeezed orange juice, especially on vacation...
thanks. I gave up juice as a calorie thing. Remember that commercial about how many oranges it takes to make a container of orange juice?
Yes, i eat sweet potatoes and hardly ever corn.
I so miss corn!
I miss chinese food... a lot
I didn't even think about it till you brought it up. But can you imagine what restaurants put in it? Even though before the pandemic, one restaurant here started a gluten-free menu.
I think it's the MSG that makes me so, extra stiff. I had it without MSG at...what is that chain that's so good? and they have it in supermarkets? Anyway it was really really good.
They don't do gluten-free anymore (and I don't eat out or order in anymore). We are supposed to eat organic...
I also miss peas...
no peas either?Oh, the restaurant I was think of was PF Chang.
We shouldn't eat peas, but every Chinese restaurant has them.
Hi, Sandy. I had to first learn about my body to understand what would trigger relapses before I could try to avoid them. There were two things that I noticed were real killers for me: first was stress and second was humidity. The stress was by far the worst, and it not only caused MS relapses but also horrific migraines, which were present many years prior to the MS. Because I was a litigator in my prior life, I operated at a very high level of professional stress which basically exacerbated by my high strung personality. Add on to that the stress of raising two sons and a marriage and I was like a package of TNT waiting to explode. I made "me time" out of being with my friends and riding our horses, but I guess it wasn't enough. I tried meditation and biofeedback and all that stuff but I just couldn't relax and it was horribly frustrating, which just added to the stress. So we made some tough physical changes such as retiring from my law practice, which was a whole other source of stress, and moving to Arizona which has almost zero humidity even though the heat has gotten extreme here in the high desert in the last several years.
In the meantime, I am now on Ocrevus. I also take many supplements, including Acetyl-L Carnitime, Alpha Lipoic Acid, Lions Mane, Vitamin B -2 and B- 6, Folic Acid, Turmeric with Black Pepper. I have also had good luck with pain control with medical cannabis; there is a strain called "Blue Dream" which comes in syrup and some other edibles (as well as bud but I dislike smoking or even vaping) that I find works great, either with the MS all-over pain or migraines, the latter of which I rarely get any more.
I also exercise a lot. In addition to horseback riding every day, I go to PT at least twice a week, as well as to the therapy pool and massage therapy. I know that not everyone enjoys or can go horseback riding, but the point is that that is my "me time" and is an activity that I have loved beyond measure since I was 7 years old; you need to find an exercise or physical activity that is not a chore or something you have to do, but rather something you love to do! It not only helps you strengthen but also brings you peace. I think that the trick to physical activity is that you keep moving. Even while I am watching TV, I am exercising my ankles and lifting my featherweight barbells.
I eat healthy; lots of fruit and veggies. I wish I could be a vegetarian, or maybe even a pescatarian, mostly because I love animals, but my husband is strictly a meat guy, so I find myself eating way more beef than I want to. I do try to eat organic, non-GMO, and I did remove veal and lamb from my diet for humane reasons, but every once in awhile I find myself craving a steak. I think that's because I am prone to anemia. I also try to eat more fish and poultry, or go meatless, but I haven't found anything regarding my diet that really affects me.
Sorry for the length, but I hope this helps.
Dear @Sukie427
Thanks very much for the long post. I love Sedona and would love to retire out with there. I forgot to mention that I try to play piano. Not exactly physical exercise but it is something good for the brain and it is something that I love to do. Vegetarian was not something I would have imagined ever doing because I loved BBQ steak but I had a doc who gave me lots of research about how it helps MS. She did a documentary called Code Blue and it’s on Amazon
Sedona is actually great for retirement, but the COVID is killing it, just like everything else. They are building like crazy, and not in a good way. Also, we are totally inundated with people from other states where COVID is rampant and most of them refuse to wear masks or socially distance, and none of them can drive! 🤬 The air B&B explosion is causing major problems. I guess nothing is safe any more, and my husband is beginning to dislike living here when once this was such a paradise....but I am not going back East!!!
@sukie427 it has to get better once vaccinations are in practice. Did you find good treatment professionals?
One would hope, Sandydemop ! They say it will be available to the general public in the spring, but I am kind of scared. I am going to have a zoom appt. with my neuro tomorrow and am going to ask him. After living in very large metro areas all my life it was hard to wrap my arms around life in a small town, and that includes very sparse good health care. Up here there are no MS specialists, so I go to Barrow Neurological Institute in Phoenix, which is two hours south, but I am happy with them. Don't know where you live, but how do you feel about your care???
My husband and I are looking for a place to retire. I can't deal with this cold much longer. We've never considered Sedona. Would you recommend it? I understand it's not what it used to be, but if there is no ground for comparison, is it acceptable? Thanks.
I think it's wonderful! It is primarily a retiree community. We basically have no crime, although in the last year there have been a couple of criminals who've shot it out with the police; luckily no bystanders got hurt, although unfortunately a police officer was wounded the other day and the car thief was wounded. also. We frequently leave our doors unlocked but I think not so much any more. Trouble is rising here, as everywhere else, but after living in 3 big metro areas, especially Miami--Ft. Lauderdale--this is nothing. The night sky is full of stars and we sit outside and watch them--so peaceful. And if you like being outdoors--so many walking/hiking/bike trails (we also use them with our horses but commercial stables are not permitted) you will never see them all! Lots of things to do around town, and almost every religion is represented. Lots of restaurants, boutiques, etc. Medical care, not so much. If you have real problems, you will likely need to go to Flagstaff (45 min.) or Phoenix (2 hrs.--that's where my MS specialist is). You can find larger chain stores in Cottonwood (about 30 min.) but if you want Big City you will need to make runs to Phoenix. Although my friends make Costco and Trader Joe's runs to Prescott, about 1.3 hrs. away. On the other hand, Grand Canyon is about 1 hr. 45 min; Glen Canyon about 4 hrs.; Zion National Park about 5 hrs.,; LA about 8 hrs. and San Diego about 5 hrs. Once you're up at Zion, you're not far from Bryce Canyon, Canyonlands and Arches Nat'l Parks (in Moab), and Las Vegas is 5 hrs. If you want to see concerts (like rock), you're stuck with Las Vegas or Phoenix, but they're easy if you've got the time! Even Yellowstone and the Grand Tetons are doable by car, as is New Mexico. If you like wide open spaces and peace and quiet (although can be ruined by the tourists) you will love it here. I would suggest visiting first, in every season, and for several weeks at a clip so you get the feel for it. Let me know if you come!
Sounds so attractive and ideal! I was there in August and the heat was manageable. The winter is not my friend. But I'm still working from home, with a New York license so it can't be soon. Yes, I will contact you if i can come out there. thanks!
Thank you for such a detailed response! Sedona sounds wonderful. I too am used to living in large metro areas in Russia, Germany and the US, but I am a city girl. Even though we experienced great turbulence, vandalism and shootings here a few months ago, I love big cities. And I think I need to be by the water. We were a tally thinking Florida. Why did you leave? Was the humidity unbearable?
Wow, you have lived in a lot of places! I also was a city girl until I had just had it. South Florida was just too much crime everywhere— we made up our minds to get out the first chance we got after a friend’s 9 yr. old son was abducted and murdered while on the way home from school. It was just all over and you could not get away from it. Also it was terribly overcrowded which put a massive strain on services and recreation resources. The humidity was bad but became unbearable with MS. The schools were poor unless you paid very high taxes to live in one of a handful of exceptions. There is technically no state sales tax but if you are a homeowner you pay all sorts of specific taxes that essentially make up for it. We lived just 14 miles inland and I can count on one hand the number of times I went to the beach. I think that I was born to live out west but it’s not for everyone, for sure.
Hi Sandy-I started an Auto Immune Diet a month ago that’s similar to Terry Wahl’s diet. I’ve been seeing a Naturopathic Doctor this last month and I’m still seeing my Neurologist and other doctors too. What I like best about him is he doesn’t have me go off any of my present medicines or treatment, he just adds healthy things to support my overall health and immune system. I reached a point where I had it and said enough!! Especially this year-with my daily intense fatigue, spasticity and nerve pain and knew things were slowly getting worse over the 7 years I’ve had MS. I did not expect first though to be put on a strict diet. The diet is not for everyone that’s for sure and many days I get very tired of eating sweet potato 🍠 or a pancake made with cassava root flour, lol instead of grains, but the great benefits have been happening so far and that’s where I keep my focus as I look at that sweet potato or plate of vegetables. To feel better is worth far more to me. I’m excited to see what’s to come. It has reduced some of my pain so far which I think is amazing and my mental and physical fatigue doesn’t feel as intense but I still have it. This will definitely be a lifestyle change for me, along with other things he advised me to take daily.
What else does he recommend?
My Naturopathic doctor personalized my plan based off my blood test results. He saw that I was low in thyroid hormones (hypothyroid), but my reading has been normal to my medical doctors. I asked him why my Docs never noticed this before and I never saw a problem either on my tests. He said the range is an average of people who have a thyroid condition and people who don’t so it’s not exactly accurate. He also told me that my T Helper immune cells are the confused cells in my body that attack my brain cells not the B cells. I always knew since Dx that confused T cells or B cells were main culprits of MS lesions, but I never knew which one is actually attacking my cells. He also advised daily supplements to take for anti-inflammatory benefits: extra strength Curcumin supplement twice daily, Fish oil caps, organic green powdered drink a few times a day for more green veggies and most of all, sticking to AIP diet, which I’ll do.
Ok so i'm curious. What is AIP? I'm so glad you have a doc who knows about nutrition. My neurologist is an MS specialist and old school so no talk about supplements I am adding 3T refrigerated flax seed oil for Omega 3. That might be doing something. I have been making green smoothies for the last week and it seems to be making a difference. Yay.
Hey! Just going to comment in case you didn’t know, Japanese sweet potatoes taste like French toast of you add a little cinnamon. I learned this back in my vegan days. No syrup needed.
Today I realize i am not walking as well as yesterday because there were some fried onions in my green beans last night. Ugh.
I agree with a lot of what's been said so far. I've:- cut sugar out of my diet. Only get what's in fruit
- cut dairy product - milk, cheese, ice cream, butter for cooking
- have become mostly pescatarian
- Yoga several times a week
- avoiding stress at all cost (I must admit that working from home has been a blessing for me as it removes the stress of driving and gives me more "me" time throughout the day)
- avoid sedentary days at all costs.
- routine is my new mantra. Any unexpected mental or physical drain is avoided.
With the above, life has been acceptable maybe even better than prior to diagnosis and treatment. And I'm learning ways to not have it too boring.
@Nicoly3467 💛it. I never heard of cassava root flour