Fibromyalgia, exercise and weight loss
brookdalemom
Posts: 6 Member
Hello — I am back to MFP after a few years of not logging. Not surprisingly I gained back the weight I had lost and am in not great health. I have fibromyalgia and Epstein Barr, along with some pre-diabetes numbers that aren’t great. Was wondering if exercise is a challenge for others with Fibromyalgia. My mind is willing but the body is not. I will take a class, do a workout, etc and then spend 2-3 days in pain and with tremendous fatigue. Looking for others to talk to with similar chronic illnesses.
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Yes, I have the same experience. It helps me to start easy and add to it. I wore a pedometer and kept very good records for several years, adding a few steps at a time.1
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My wife, around 8 years ago, was so sick with Fibro and Chronic Fatigue that she could barely get out of bed. She asked me if I could just let her die. That was my breaking point. I spent a year trying to help her, researching everything I could on what might work. During that time, she took only OTC pain killers, never any prescriptions.
Fast forward to today, she's healed. I have my wife back. Hard to say exactly all that worked, but we started with going gluten free (there are at least three studies that report significant improvement with going gluten free). We're talking strict. No cheating.
We also found a Holistic doc that did tender point shots. Pretty expensive, not covered by insurance, but they helped her manage the pain. In the meanwhile, we green juiced 5 days a week, using celery, cucumbers and cabbage as the base. Adding only some pineapple, cilantro (great for clearing out heavy metals) and maybe a bit of beets or green apple. She also took Chlorella/Spirulina, which helps with heavy metals (many think heavy metals have a lot to do with pain -- cilantro moves it out of your cells and Spirulina/Chlorella are supposed to clear it from the body). We also eliminated fried foods and nearly all sugar. Started eating only Organic Beans and Grains (not that expensive, but that eliminates a lot of Round-Up out of your diet -- Round-Up, IMHO, isn't as bad as some think, but it does have antibiotic properties and can impact a healthy microbiome, which you need. We started eating more whole foods and cooking at home. Fiber is important. This was gradual as she had bad IBS too.
Found another Holistic/Functional doc. They did allergy testing. Found out she was allergic to cow dairy. We both eliminated that (we since have added back in goat/sheep cheese in limited amounts). They found her Cortisol levels were way low (stage three adrenal fatigue). Got her on some adrenal supplements, light acupuncture.
Omega3s are huge. So are Methyl B Vitamins. Minerals and Magnesium are very important. She added in CBD Oil, Turmeric and Mirica (a pain reliever made from a root vegetable derivative and a polyphenol -- it's a European, holistic pain reliever that won't kill your stomach like NSAIDS).
She was doing CICO and not losing a lot. When she eliminated gluten and dairy, she dropped 25 lbs in 4 months. It was astonishing. During menopause!
It can be done. She's living proof. I'm sure I'll get some "woos" on this, and I don't give a dog's rear end about that. The conventional docs told her take Opioids, Gabapentin, Lyrica and Cymbalta. Don't get me started on any of that garbage. We all know about opioids. Gabapentin kills brain synapses. That's OK, docs said, after a certain age, your brain doesn't create new synapses. Whoops! That was proven wrong four years later! Lyrica and Cymbalta have only been proven to work because they help you sleep! Guess what, so does Melatonin. Sleep is so key as well -- easy to fall into that trap of screen time at night when in pain. Get rid of the screens at night. She took 5-HTP and other more natural sleep supplements.
Other think it could be combination of latent viruses, genetics (MTHFR is huge in Fibro), a catastrophic injury (my wife had one) and diet. Monolaurin is something else she takes daily, which seemed to help a ton.
If you can afford it (because insurance doesn't cover it), work with a Functional doc. They should do a blood test, allergy test, hormone test and work with you. If you want to PM me, feel free.6 -
brookdalemom wrote: »Hello — I am back to MFP after a few years of not logging. Not surprisingly I gained back the weight I had lost and am in not great health. I have fibromyalgia and Epstein Barr, along with some pre-diabetes numbers that aren’t great. Was wondering if exercise is a challenge for others with Fibromyalgia. My mind is willing but the body is not. I will take a class, do a workout, etc and then spend 2-3 days in pain and with tremendous fatigue. Looking for others to talk to with similar chronic illnesses.
I have MCS, which has some overlap with FM (and CF.) I used to belong to a discussion board for people with these three conditions. Many with FM said that exercise helped, but it had to be very gentle. Most group classes at gyms are the opposite of gentle. Have you tried things like gentle/beginner yoga or short walks?
When I was first diagnosed I put a great deal of effort into cleaning up my environment and diet, which helped quite a bit. Do give Mike's post above a careful read. Oh, if you want to PM him, send him a friend request first - I've heard about messages never being received unless the parties are "friends."1 -
Evidence suggests that resistance training with proper load management is key to lowering the symtoms of chronic pain.
https://pubmed.ncbi.nlm.nih.gov/30657077/
I would think going to a "class" that ignores load management for fibro isn't the best idea.
Personally and for those I train with chronic pain diseases the method I have great success with is involving auto regulation for load management. We have to pay closer attention to all the variables of stressors (e.g., volume, intensity, lift selection, frequency, etc...).
I assure you that resistance training is extremely helpful controlling the symtoms with a careful eye while improving the quality of life.3 -
I have one thing to say… keto diet.
Reversed my Diabetes gives me loads more energy and the weight drops off no exercise1 -
kshama2001 wrote: »brookdalemom wrote: »Hello — I am back to MFP after a few years of not logging. Not surprisingly I gained back the weight I had lost and am in not great health. I have fibromyalgia and Epstein Barr, along with some pre-diabetes numbers that aren’t great. Was wondering if exercise is a challenge for others with Fibromyalgia. My mind is willing but the body is not. I will take a class, do a workout, etc and then spend 2-3 days in pain and with tremendous fatigue. Looking for others to talk to with similar chronic illnesses.
I have MCS, which has some overlap with FM (and CF.) I used to belong to a discussion board for people with these three conditions. Many with FM said that exercise helped, but it had to be very gentle. Most group classes at gyms are the opposite of gentle. Have you tried things like gentle/beginner yoga or short walks?
When I was first diagnosed I put a great deal of effort into cleaning up my environment and diet, which helped quite a bit. Do give Mike's post above a careful read. Oh, if you want to PM him, send him a friend request first - I've heard about messages never being received unless the parties are "friends."
I didn't mention that but yes, most with Fibro also have MCS (Multiple Chemical Sensitivity), even if they don't know it. My wife owned a cleaning business (years ago, long before she had Fibro) and started having huge issues with it after just like 6 months. She would literally have to pull over and vomit. Air fresheners, perfumes, even laundry scents are all out now. She really, really has to be careful with makeup and face care. It's incredible how many things affect her. So I should say, she's not completely 100% (though most days it's not an issue), because if we went back to the behaviors that made her so sick, she could revert any time. We have to stay mindful of that. Just recently, we had to stop her from drinking Nespresso. My son bought her one but nearly all of their pods aren't organic. Coffee has a ton of chemicals used in processing. Organic still has some but less. She's back to Organic Coffee again. It's actually cheaper than the Nespresso. I guess I'm saying it takes a huge amount of vigilance and consistency, but the rewards can be amazing.
As to exercise. It's a struggle still. My wife felt so good for a while she went back to six days a week. What we learned was 3 or 4 was fine, but your body, with Fibro, needs more time to recover than most.
She does use a supplement called D-Ribose, which she does feel helps. It's supposed to help you recover faster. For her, that's critical. But none of her exercise involves pounding. Pilates, Barre, Stationary Bike, Elliptical, outdoor swimming (indoor is bad with the MCS -- we have a pool and I limit the chlorine). Oh, she's having another health issue now that's driving her crazy. She has a disc in her back that might need minor surgery next year. She's doing a vibration plate a lot more. She's 60, so it's just one of those things that have caught up with her -- her form bending over is terrible. Vibration plates don't sound like much (and you're not going to burn serious calories from them) but they help with inflammation and you do burn some. My son, a bodybuilder, former soccer player and wrestler, made fun of it the X-mas I got it -- until he stood on it for 10 minutes. Now, when he visits us, he even gets on it.
There is so much more to it, but if you want to talk, feel free. I certainly don't have all the answers, but there are some great docs and resources that took me a long time to find that helped us tremendously.
What @Chieflrg said about lifting. So important. What you can. My wife had a Fibro support group that, until she shut it down, was up to 3K members. I was her researcher. So, so many women have joint issues with Fibro. IMHO, there's something in Lyrica and Cymbalta that destroys/dissolves joints. I think, in the future, there will be a huge class action lawsuit related to that. Hip, knee replacements in the 30s and 40s. Whether it's the drug or the lack of lifting and movement, something is going seriously wrong. Lifting is so important, but you have to know your limits and just do what you can.3 -
MikePfirrman wrote: »kshama2001 wrote: »brookdalemom wrote: »Hello — I am back to MFP after a few years of not logging. Not surprisingly I gained back the weight I had lost and am in not great health. I have fibromyalgia and Epstein Barr, along with some pre-diabetes numbers that aren’t great. Was wondering if exercise is a challenge for others with Fibromyalgia. My mind is willing but the body is not. I will take a class, do a workout, etc and then spend 2-3 days in pain and with tremendous fatigue. Looking for others to talk to with similar chronic illnesses.
I have MCS, which has some overlap with FM (and CF.) I used to belong to a discussion board for people with these three conditions. Many with FM said that exercise helped, but it had to be very gentle. Most group classes at gyms are the opposite of gentle. Have you tried things like gentle/beginner yoga or short walks?
When I was first diagnosed I put a great deal of effort into cleaning up my environment and diet, which helped quite a bit. Do give Mike's post above a careful read. Oh, if you want to PM him, send him a friend request first - I've heard about messages never being received unless the parties are "friends."
I didn't mention that but yes, most with Fibro also have MCS (Multiple Chemical Sensitivity), even if they don't know it. My wife owned a cleaning business (years ago, long before she had Fibro) and started having huge issues with it after just like 6 months. She would literally have to pull over and vomit. Air fresheners, perfumes, even laundry scents are all out now. She really, really has to be careful with makeup and face care. It's incredible how many things affect her. So I should say, she's not completely 100% (though most days it's not an issue), because if we went back to the behaviors that made her so sick, she could revert any time. We have to stay mindful of that. Just recently, we had to stop her from drinking Nespresso. My son bought her one but nearly all of their pods aren't organic. Coffee has a ton of chemicals used in processing. Organic still has some but less. She's back to Organic Coffee again. It's actually cheaper than the Nespresso. I guess I'm saying it takes a huge amount of vigilance and consistency, but the rewards can be amazing.
[snip]
I am MUCH better than I was 20 years ago, but air fresheners, perfumes, and artificially scented laundry/dish detergents are still not an option for me. Fortunately, all the major laundry detergent brands have fragrance-free option now. For dish detergent, I can use naturally scented brands like Seventh Generation. (This is not true for everyone with MCS.) I used to get headaches walking down the laundry aisle in supermarkets.
I CAN'T WAIT until we move this fall - at the new place there aren't neighbors close enough to plague me with their fabric softener. YUCK. I hate it when I had planned to garden or want to have my windows open and can't because of a neighbor's fabric softener.
Needless to say, I don't use regular fabric softener myself, but apple cider vinegar in the wash acts as a natural softener. (I don't bother with this on a regular basis. I will use it on new clothes to help them off-gas faster.) The clothes will smell like vinegar when wet, but this goes away as they dry. I use the big cheap gallon jugs of ACV for cleaning tasks like this and Bragg's for cooking.
I too am very careful with personal care products. I like bareMinerals for makeup and Acure Organics for shampoo and conditioner, which I also use for body wash and shaving cream. I've found a wide variety of personal care products without artificial fragrance on iherb.com. (Also Whole Foods, but iherb is generally cheaper and more convenient. Alas, Whole Foods products cannot be assumed to contain no artificial fragrance. Read labels!)2 -
@kshama2001 -- I can't tell you how familiar all of that is. There's a Lush store at the local mall with a Nektar (juice/coconut ice cream) next to it. My wife loves the bowls at Nektar but can't get close to the store because all the overbearing smells from Lush.2
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Thank you all - I really do appreciate all the information.2
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MikePfirrman wrote: »She took 5-HTP and other more natural sleep supplements.
This is purely a curiosity question - I read somewhere (don't even ask me where, I really don't remember), that 5-HTP works great for awhile but eventually is no longer effective. How long has she been using it & during that time has she noticed any change in response to it? If it's effectiveness has waned for her over time, has she cycled it at all?
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While no Fibro, exercise can be challenging due to osteoarthritis that flares easy. In a recent doctors visit, my doctor suggested looking into tai chi as a new addition to my exercise and mindfulness routine. Not a big calorie burner but gentle and possibly a good starting point?0
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I haven’t built up to a full one-hour tai chi class yet. Even though it is gentle, an hour is still a lot of any exercise.
There is a great class at my gym, great teacher!2 -
MikePfirrman wrote: »She took 5-HTP and other more natural sleep supplements.
This is purely a curiosity question - I read somewhere (don't even ask me where, I really don't remember), that 5-HTP works great for awhile but eventually is no longer effective. How long has she been using it & during that time has she noticed any change in response to it? If it's effectiveness has waned for her over time, has she cycled it at all?
She cycles off and on a lot of supplements to be honest. That was one thing I was astonished at when we went to a Holistic/Integrative Doc -- the cost. They had her on around $400 a month in supplements. After around a year, we really went through them all to sort the "throw everything against a wall" mentality to more science based. I think we have it down where it's around $75, maybe $80 a month.
Once the pain subsides some, it's been easier for her to sleep at night. Pain and sleep are a viscious cycle that's hard to break. You can't slow down pain without sleep and it's so hard to sleep in massive pain. She actually mosty takes a blend now that (I'm pretty sure) includes 5-HTP but also has Melatonin, Valerian, L-Theanine, and Chamomile. That and a CBD Oil, along with really watching caffeine after noon, has done the trick -- obviously being out of pain helps a ton.2 -
MikePfirrman wrote: »
She cycles off and on a lot of supplements to be honest. That was one thing I was astonished at when we went to a Holistic/Integrative Doc -- the cost. They had her on around $400 a month in supplements. After around a year, we really went through them all to sort the "throw everything against a wall" mentality to more science based. I think we have it down where it's around $75, maybe $80 a month.
Once the pain subsides some, it's been easier for her to sleep at night. Pain and sleep are a viscious cycle that's hard to break. You can't slow down pain without sleep and it's so hard to sleep in massive pain. She actually mosty takes a blend now that (I'm pretty sure) includes 5-HTP but also has Melatonin, Valerian, L-Theanine, and Chamomile. That and a CBD Oil, along with really watching caffeine after noon, has done the trick -- obviously being out of pain helps a ton.
I'm glad she's gotten the pain (and the money, yikes!) under control at least. Thanks for your response!1 -
NerdyScienceGrl wrote: »While no Fibro, exercise can be challenging due to osteoarthritis that flares easy. In a recent doctors visit, my doctor suggested looking into tai chi as a new addition to my exercise and mindfulness routine. Not a big calorie burner but gentle and possibly a good starting point?
With the caveat that some tai chi styles involve turning on a weighted leg, which may be contraindicated if someone has certain kinds of joint issues. I did tai chi for a long time (my late husband taught tai chi among other Chinese martial arts), eventually stopped practicing because it was not a thing that worked sustainably for my particular knees. It can be great for many, though - not dissing it as a generality.3 -
NerdyScienceGrl wrote: »While no Fibro, exercise can be challenging due to osteoarthritis that flares easy. In a recent doctors visit, my doctor suggested looking into tai chi as a new addition to my exercise and mindfulness routine. Not a big calorie burner but gentle and possibly a good starting point?
With the caveat that some tai chi styles involve turning on a weighted leg, which may be contraindicated if someone has certain kinds of joint issues. I did tai chi for a long time (my late husband taught tai chi among other Chinese martial arts), eventually stopped practicing because it was not a thing that worked sustainably for my particular knees. It can be great for many, though - not dissing it as a generality.
Thanks Ann, that’s good to know! Not having any experience, I only had some of the preliminary reading about its benefits for arthritis sufferers to go off and fibromyalgia had been discussed.3 -
I think I have CFS but don't know how to confirm it or even if that makes any difference. I had it very badly about 25 years ago and progressed to where I could work full time, but I still can't do much activity without an impact. I can walk 2000 steps one day, struggle to do 2000 the next day, and the more days I do this the worse I get. I also have depression and anxiety problems so the doctors easily blame my fatigue on that. I agree that I have those problems, but not that they cause my fatigue. Exercising should make me feel better, not worse. And the more exercise I do the worse I feel. I've been dealing with this for a long time so I've tried many things, including most of what is discussed here. I'm happy to be where I'm at from when this first started, but I still wish I could do better.
On a good note, I just retired so I hope a new lifestyle will help me. I want to work on dietary changes and losing weight.4
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