Fibromyalgia and/or Chronic Fatigue Syndrome, anyone?
CoconuttyMummy
Posts: 685 Member
Hi guys,
Ive been off the forums for a while due to ill health - my symptoms (a list as long as my arm, in particular fatigue/exhaustion not improved by sleep, deeply aching body, muscular cramps & spasms, stiffness, weakness, brain fog, sensitivity to pain, intolerance to physical, mental or emotional exertion etc) have been worsening and becoming more frequent over the last few years but this recent year my symptoms have really snowballed and im sick most days, unable to do much of what i could do even 6-8 months ago - my body just wont allow me to; climbing the stairs feels like scaling Mount Everest and i have to lay down and rest after small chores such as preparing my son's breakfast or getting him or myself dressed or unloading the washing machine, hoovering, etc .. so as you can imagine my TDEE has plummeted due to frustratingly having to limit my weight-lifting along with much less physical movement in general.
So, my doctor has finally made a preliminary diagnosis of fibromyalgia (likely along with chronic fatigue). Has anyone here been diagnosed with either of these conditions?
Im struggling to find the best nutritional balance to support my body in the best way i can, in an attempt to feel better in general, at least not to exacerbate my symptoms, and ideally to provide me with the energy to complete simple day to day chores, let alone managing a little weight-lifting as and when i feel up to it.
I just dont know what to do with my calories right now, let alone my macros.
I feel like im between a rock and hard place because ive obviously gained a little of the weight back that i lost over the past year but when i drop my calories to a sufficient deficit to start losing again i feel unbelievably weak & exhausted (more so than usual), resulting in me being able to move around so little that my TDEE just drops even further.
Regards macros im even more unsure what is best for me, in particular for the fibromyalgia symptoms. I went low carb over a year ago and keto about 9 months ago. I dont know if its a coincidence but this is right around the time my symptoms started to worsen, dramatically so after going keto. I love the low-carb woe and i credit most of my weightloss to dropping the carbs, particularly as i seem to have metabolic syndrome too (lucky me!) and always felt carbs didnt suit my system. But my energy levels suffered so hugely when i dropped my carbs to below 20g total and despite sticking with it for 9+months the overwhelming tiredness and weakness never went away. Body composition improved dramatically however.
The weird thing was, even when i raised my calories to above maintenance (keeping carbs still below 20g total) i still felt as though my body was missing something important - almost like mild malnutrition, which is crazy when ive always chosen a wide variety of nutritious foods.
My family have become so worried about me and are adamant that my body is not getting enough carbs to function properly. Ive argued until im blue in the face that the body can run on fats for fuel etc etc, but 2 months ago i got so sick i held my hands up and decided to try adding some carbs back into my diet to see if it helps with energy and at least. So since then ive been playing with my macros, trying to find my carb sweet spot - until now i literally dont know what the hell im supposed to be doing.
I tried high carb, low fat again - definitely big no-no. I just felt & looked really bloated with lots of gastro discomfort. I did feel a slight increase in energy but i felt bloated, uncomfortable & generally gross - not to mention the overwhelming cravings and urge to over-eat/binge. Then i tried 100-150g total carbs - which was still too high as i was still experiencing the carb-induced side-effects.
So 'low-carb' appears to necessary for me to keep my weight in check and prevent IBS issues. But how low? Seeing as Keto (below 20g total) made me feel so drained and weak, that leaves me anywhere between 30g-99g total carbs. Im just really unsure of how many grams of carbs to try next, sensibly.
Can anyone suggest what macros you think i could try next? I was thinking of ~50g total carbs, maybe? Does this sound sensible?
Changing my macros is becoming so confusing - i just want to find a reasonable plan and stick with it so i can concentrate on coping with my fibromyalgia better.
Sorry for such a long post. Really appreciate anyones thoughts.
Ive been off the forums for a while due to ill health - my symptoms (a list as long as my arm, in particular fatigue/exhaustion not improved by sleep, deeply aching body, muscular cramps & spasms, stiffness, weakness, brain fog, sensitivity to pain, intolerance to physical, mental or emotional exertion etc) have been worsening and becoming more frequent over the last few years but this recent year my symptoms have really snowballed and im sick most days, unable to do much of what i could do even 6-8 months ago - my body just wont allow me to; climbing the stairs feels like scaling Mount Everest and i have to lay down and rest after small chores such as preparing my son's breakfast or getting him or myself dressed or unloading the washing machine, hoovering, etc .. so as you can imagine my TDEE has plummeted due to frustratingly having to limit my weight-lifting along with much less physical movement in general.
So, my doctor has finally made a preliminary diagnosis of fibromyalgia (likely along with chronic fatigue). Has anyone here been diagnosed with either of these conditions?
Im struggling to find the best nutritional balance to support my body in the best way i can, in an attempt to feel better in general, at least not to exacerbate my symptoms, and ideally to provide me with the energy to complete simple day to day chores, let alone managing a little weight-lifting as and when i feel up to it.
I just dont know what to do with my calories right now, let alone my macros.
I feel like im between a rock and hard place because ive obviously gained a little of the weight back that i lost over the past year but when i drop my calories to a sufficient deficit to start losing again i feel unbelievably weak & exhausted (more so than usual), resulting in me being able to move around so little that my TDEE just drops even further.
Regards macros im even more unsure what is best for me, in particular for the fibromyalgia symptoms. I went low carb over a year ago and keto about 9 months ago. I dont know if its a coincidence but this is right around the time my symptoms started to worsen, dramatically so after going keto. I love the low-carb woe and i credit most of my weightloss to dropping the carbs, particularly as i seem to have metabolic syndrome too (lucky me!) and always felt carbs didnt suit my system. But my energy levels suffered so hugely when i dropped my carbs to below 20g total and despite sticking with it for 9+months the overwhelming tiredness and weakness never went away. Body composition improved dramatically however.
The weird thing was, even when i raised my calories to above maintenance (keeping carbs still below 20g total) i still felt as though my body was missing something important - almost like mild malnutrition, which is crazy when ive always chosen a wide variety of nutritious foods.
My family have become so worried about me and are adamant that my body is not getting enough carbs to function properly. Ive argued until im blue in the face that the body can run on fats for fuel etc etc, but 2 months ago i got so sick i held my hands up and decided to try adding some carbs back into my diet to see if it helps with energy and at least. So since then ive been playing with my macros, trying to find my carb sweet spot - until now i literally dont know what the hell im supposed to be doing.
I tried high carb, low fat again - definitely big no-no. I just felt & looked really bloated with lots of gastro discomfort. I did feel a slight increase in energy but i felt bloated, uncomfortable & generally gross - not to mention the overwhelming cravings and urge to over-eat/binge. Then i tried 100-150g total carbs - which was still too high as i was still experiencing the carb-induced side-effects.
So 'low-carb' appears to necessary for me to keep my weight in check and prevent IBS issues. But how low? Seeing as Keto (below 20g total) made me feel so drained and weak, that leaves me anywhere between 30g-99g total carbs. Im just really unsure of how many grams of carbs to try next, sensibly.
Can anyone suggest what macros you think i could try next? I was thinking of ~50g total carbs, maybe? Does this sound sensible?
Changing my macros is becoming so confusing - i just want to find a reasonable plan and stick with it so i can concentrate on coping with my fibromyalgia better.
Sorry for such a long post. Really appreciate anyones thoughts.
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Replies
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What kind of supplementing for sodium, magnesium and potassium have you done?
Those are always the first suspects0 -
You've heard my sodium rants before, so I'll refrain this time.
IIRC, you felt pretty good when you were doing paleo, right? Why not stick with those levels? Avoid stress. Check out this diet (200g/d carbs):
http://perfecthealthdiet.com/0 -
I have fibromyalgia. Was diagnosed with it fifteen years ago. I have seen drastic improvements at 20 gm, or less, daily. My thinking is that your electrolytes may have been low, making you feel so weak and tired before. With this woe 3000-5000mg of sodium is needed, everyday, to maintain your energy..... As long as I get my sodium (along with magnesium and potassium supplements) I feel great, but if it drops (I'm not being diligent about it when it does) I feel terrible. Best to you!0
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I agree completely with @karlottap.
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(((((Hugs))))) I'm so sorry you're still suffering. I know you've worked hard to find tune your approach to diet and exercise. Have you ever tried the FODMAPS approach? If I recall correctly, it's designed to minimize inflammation, which is always a suspect when pain is involved. I haven't tried it, but I've heard good things.
Wishing you much relief and success!
Mary0 -
Sunny_Bunny_ wrote: »What kind of supplementing for sodium, magnesium and potassium have you done?
Those are always the first suspects
Hi Sunny_Bunny,
Electrolytes are more than taken care of, i would have thought. Daily i take 800mg supplemental potassium (8 pills!), 800mg magnesium (4 pills) & a ton of pink himalayan salt in and on every meal (enough to taste very salty!). I would have thought taking that amount of pills along with all the nutrients in my foods should cover the electrolytes issue, surely? 0 -
You've heard my sodium rants before, so I'll refrain this time.
IIRC, you felt pretty good when you were doing paleo, right? Why not stick with those levels? Avoid stress. Check out this diet (200g/d carbs):
http://perfecthealthdiet.com/
LOL, Wabmester! Hellooooo! Long time no speak
Yeah, i did feel improvement moving from SAD to Paleo, for sure. But my body stopped wanting to lose fat at those level of carbs. I lowered my cals as low as i possibly could towards the end of my Paleo phase and only started to lose weight successfully again after lowering my carbs further. Keto was definitely the best macro balance for fat loss for me, without having to drop calories to ridiculously low levels, and the body recomposition i experienced from consistently consuming below 20g total carbs was like nothing ive seen before - my lean muscle mass increased dramatically whilst dropping fat slowly but surely. Its so very disappointing and frustrating that i felt like death whilst eating this way!
Im wondering if the main problem with me and Keto is that i refuse to drop my protein below 100g a day - my goal is actually 120g a day - as increasing muscle mass is as important to me, if not more, than losing the last few pounds of excess fat, and my training regime (when my health allows it) comprises a lot of high volume, high intensity, heavy weight-lifting (ie anaerobic activity). My goals have always been to pack on as much lean muscle mass as possible, whilst slowly stripping those last few pounds of fat, so its super important for me to get sufficient protein. Seeing as my weight-loss calories are only 1100-1250 that makes my fat grams considerably lower than my protein grams - Could this have kept me out of ketosis and in a permanent state of Keto-flu for 9 solid months? It seems i never recovered from the keto-flu.
Im just wondering if 50g carbs total a day (at ~1200 cals) will also result in me being in never ending keto-flu?
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Oh btw, Wab.. I'll check out the linky you gave me, but 200g carbs a day would have me rolling around like a beachball in no time - i get so bloated from high carb i literally look 6 months pregnant (when i have a flat stomach and smallish waist naturally)/0
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CovonuttyMummy my friend was diagnosed with fibre myalgia and saw a qualified dietician last week. She told me tonight about it and I get home to see your post! Her dietician said too much acidity in the blood increases symptoms so alkaline foods are a good choice. Suggest you use that and maybe do some Internet searches as hearing her "do eat" and "don't eat" list made my head hurt!0
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mlinton_mesapark wrote: »(((((Hugs))))) I'm so sorry you're still suffering. I know you've worked hard to find tune your approach to diet and exercise. Have you ever tried the FODMAPS approach? If I recall correctly, it's designed to minimize inflammation, which is always a suspect when pain is involved. I haven't tried it, but I've heard good things.
Wishing you much relief and success!
Mary
Hey Mary - *Hugs* back! xx
Really appreciate your kind words. I'll definitely check out Fodmaps.
The annoying thing is my body looks its best by far on a very low carb diet.
I just dont know what the answer is
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Just a guess, but two feel-bad factors to consider: stress and low sodium.
I know you think you're getting plenty of sodium, but try a simple experiment next time you feel unwell: drink some salty soup or eat some salty food and see if it helps. You'll lose a ton of sodium at 20g carbs, and you'll lose a ton more by exercising.
In terms of stress, low calories cause stress, exercise causes stress, and yes, even restricting carbs to 20g may increase the production of stress hormones.
The diet in the link I provided seems high in carbs, but he focuses on "safe starch." It might be worth a shot. The site's author is very research-focused, and he and his wife both focused solely on improving health. Weight loss was a surprising side effect for them.
Forget the focus on weight loss. Focus on your health.0 -
As I recall, there was a lot of concern over your calories being too low to handle your activity levels before you had these flare ups (running crazy low like that can actually slow your metabolism AND trigger massive fatigue and body system failures, though I"m not saying your calories were that extreme). I think it is likely you need a significant number more of calories - that your macros themselves were not the problem. You probably needed to go higher on calories and repair the damage done to your body - fatigue and all, and unfortunately gain some weight, before you can get back down to cutting.
The main reason that I say this is that we all had a number of large and lengthy discussions about how low your calories were before. @FIT_Goat has the link somewhere, but there was a lady who went full carnivore, starting feeling better, but gained weight for 6 months slowly before the fat started sloughing right off. She had to spend a good length of time REPAIRING HER BODY'S OVERALL HEALTH before weight loss could be a focus of any kind.
I don't remember the forum, but there is one that a lady cured her lyme's disease and chronic fatigue in this way, and many other testimonials. Also, for Karla and others, dropping to carnivore/zero carb and not counting calories (or worrying about them far less) was a huge stress relief, allowed them to eat to hunger without sweeteners and other triggers, allowed them to heal their bodies.
I truly hope that folks can send you some better links, but here is the one that got me looking into all of this....there are a ton of great links AFTER this article...
http://zerocarbzen.com/2015/03/09/zero-carb-interview-the-andersen-family/
Sending the hugest of hugs, hoping you feel better.... Keep us in the loop, yeah?0 -
CoconuttyMummy wrote: »Oh btw, Wab.. I'll check out the linky you gave me, but 200g carbs a day would have me rolling around like a beachball in no time - i get so bloated from high carb i literally look 6 months pregnant (when i have a flat stomach and smallish waist naturally)/
Ironically I was mulling over making a similar change today. Keto has done a lot of things for me, except getting rid of the chronic fatigue. I don't think you necessarily have to go as high as 200g. 100g might do it. That's what I'm mulling over. I've gone to 50, but it still doesn't do it. I always feel guilty about staying between 50 and 100 and have a hard time doing it. Just keep falling back down below 50 on accident and end up in endless keto-flu like you mentioned earlier. I LOVE keto, and I believe in it with a passion, but it isn't killing the fatigue for me.
I ate half an apple and 1 tbsp PB earlier before my workout as I was just feeling wiped. Guess who perked up a bit? I'm thinking about making the switch for a whole month to evaluate the fatigue level.
Maybe you can take a maintenance break while you nail down the right carb-level for you. Then you can address further weight loss. All this of course is fine for me to say since I'm only 2lb from goal. All I risk is 5lb water-weight and increasing my "dieting" for another 4 months or so, right?
I'm so close, but I'm so tired of being tired that I'm willing to put my goal further out of reach in pursuit of getting my energy where it should be. Almost 18 years of dealing with this is getting old!
I hope you find something that helps. Battling fatigue is the pits. I only have to do pain when I'm dealing with TOM. I can't imagine dealing with it all the time. I second looking into an anti-inflammatory diet. You might find relief there. Good luck.
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Fibro sufferer here, too, but I've finally got my life back after 6 weeks eating low carb.0
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I think @KnitOrMiss may be onto something. You're working your body very hard when you're able to and eating very low calories. I think maybe trying a few experiments may help to figure it out. Easiest is to add even more salt for a day and see if you perk up at all. If not then maybe try adding more calories from fats for a few days. I would refrain from exercise, unless just some walking for 30 minutes or less while you try to figure this out.
Some other things to consider that come to mind. Do you get any gluten at all? Maybe a sensitivity? Could there be any mold in your home or work? Have you lived or worked in the same place the whole time these symptoms have been developing? Maybe even some other vitamin or mineral deficiency?0 -
After almost nine months being low carb/keto I still had those yucky, very tired days. I added sodium tablets to my supplements about 4 weeks ago and the fatigue has gone (beck, I'm working after ten years of being unable to!!!!). I thought I was getting enough from salting my foods, but we need much more to maintain the energy we need (especially for the energy requirements to heal itself!). Plus, up the calories. Exercise increases the body's need for nutrients... I love @Sunny_Bunny_ recommendations, as well as from @Knitormiss! Ultimately, finding the balance, where you feel the best is key! Ain't nobody got time for feeling bad! Good luck @coconuttyMummy! I sure hope you can find the balance you seek.
Also, in regard to building muscle while losing fat comes after adaptation. Your fat levels have to be in line with macros, but what I am seeing (with my muscles is blowing my mind, especially since I don't workout. My husband says that my muscles (biceps) are harder r to touch, but that's or b0 -
If I recall, you are very close to, or AT goal weight? And your goal was to decrease body fat%? The best way to do that is with a very small calorie deficit over time. I'm thinking that 1200 calories is too aggressive a deficit considering the energy you were expending with your workouts. Agree that perhaps this was contributing to the stresses on your body.
Forget fat loss or weight loss for a minute and think health first. What happens if you increase your calories to 1500, does your fatigue lessen? Do the sodium experiment, does that help? If there is no improvement with those then I wonder if there could be some other cause. This is crazy, but I was watching a t.v. show where a woman was having similar symptoms and her doctors and even her husband were beginning to think she was a hypochondriac, but it turns out after months and months of unexplained fatigue and pain, her breast implants were growing a fungal infection.
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If I recall, you are very close to, or AT goal weight? And your goal was to decrease body fat%? The best way to do that is with a very small calorie deficit over time. I'm thinking that 1200 calories is too aggressive a deficit considering the energy you were expending with your workouts. Agree that perhaps this was contributing to the stresses on your body.
Forget fat loss or weight loss for a minute and think health first. What happens if you increase your calories to 1500, does your fatigue lessen? Do the sodium experiment, does that help? If there is no improvement with those then I wonder if there could be some other cause. This is crazy, but I was watching a t.v. show where a woman was having similar symptoms and her doctors and even her husband were beginning to think she was a hypochondriac, but it turns out after months and months of unexplained fatigue and pain, her breast implants were growing a fungal infection.
This is a very thoughtful post. We that have fatigue can be caught in a balancing act.0 -
GaleHawkins wrote: »If I recall, you are very close to, or AT goal weight? And your goal was to decrease body fat%? The best way to do that is with a very small calorie deficit over time. I'm thinking that 1200 calories is too aggressive a deficit considering the energy you were expending with your workouts. Agree that perhaps this was contributing to the stresses on your body.
Forget fat loss or weight loss for a minute and think health first. What happens if you increase your calories to 1500, does your fatigue lessen? Do the sodium experiment, does that help? If there is no improvement with those then I wonder if there could be some other cause. This is crazy, but I was watching a t.v. show where a woman was having similar symptoms and her doctors and even her husband were beginning to think she was a hypochondriac, but it turns out after months and months of unexplained fatigue and pain, her breast implants were growing a fungal infection.
This is a very thoughtful post. We that have fatigue can be caught in a balancing act.
Fortunately for me a low sugar low carb diet is giving me high energy whilst eating 1200 to 1500 calories. I only started low sugar on doctor/nutritionist recommendation. Love feeling alive again0 -
I have myasthenia gravis, an autoimmune disorder that leads to weakness and fatigue, and often misdiagnosed as chronic fatigue or fibro.
I also find that I got too worn-down on less than 30 net carbs a day, unless I did an almost all-fat day (like broth with added fat, or coffee with coconut oil and cream) on days when I can't chew or swallow well. But, those days are pretty bad to begin with, so maybe I just didn't notice the extra fatigue.
I set my TDEE at a sedentary level, and use a FitBit to track my steps. On a more active day I eat back some of the calories. I used the website in the intro posts to set the TDEE.
You might want to consider an elimination diet, like the Paleo Autoimmune Protocol, to see if you have foods that are triggering your pain or fatigue. I was surprised to find that almonds and tomatoes are problematic for me. Too much dairy-based protein will catch up with me, too. The reason I recommend the AIP is because of its focus on high-nutrient-dense foods, to promote healing in the setting of chronic illness, as well as avoiding all inflammatory foods for a month or more. Once your symptoms and flare settles down, you reintroduce foods one at a time, to see if it increases your symptoms.
I worked with a nutritionist familiar with the AIP to set up my low-carb plan. She recommended a tablespoon of coconut oil, 3 ounces of meat, 1-2 cups of low-carb veggies, and an additional fat serving (1tbs oil, 12 olives, etc) for each meal; 1-2 snacks of 1 ounce protein 1/2-1 cup low-starch veggie, and one fat serving each snack (they're really more of a mini-meal).
And, off the topic of food, don't feel guilty about giving your body the rest it needs during a flare. The inflammatory response itself is draining, and you NEED rest. Also, if the weakness (ie inability to climb stairs) doesn't improve, you might want to see a neurologist if you haven't already.
Let me know if you want to talk about it more, you can always PM me.0 -
I just read that a severe Vitamin D deficiency can mimic fibromyalgia.0
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I just read that a severe Vitamin D deficiency can mimic fibromyalgia.
@deksgrl it seems like Vit D deficiency is a factor in most premature deaths from many causes. Thankfully the Vit D3 and Vit K2 needed to get our Vit D levels into the 70-90 range costs very little. I have ready the same thing about fibromyalgia that you mentioned.0 -
I plan on doing 50 carbs a day and I'm not actually officially diagnosed but I've had symptoms of fibro and CFS syndrome for over 15 years as I have an autoimmune form of hypothyroidism since childhood. Feel free to add me if you want, I'm here to lose 65 lbs AGAIN using low carb all over0
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Dx with fibromyalgia just over 5 yrs ago. Nothing made a difference to me until I went gluten free and upped my magnesium.
I post all clinical trials/studies re: FM that come in my inbox from Medscape (health professionals' cont ed website) here: http://community.myfitnesspal.com/en/discussion/10104325/medscape-updates-on-clinical-studies-medical-professionals-continuing-ed-site-re-fm#latest0 -
I now take cod liver oil- pure liquid form, from my health store refrigerator, plus Electro Mix (sometimes 2 packets if I am exercising)made by the same folks who do Emergen-C which I also take; light version, dissolves in water.
I am not a huge believer in pills but I heard that collegen as found in Reserveage ( expensive) is helpful to fatique and joint pain.
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I mention this on another thread, @CoconuttyMummy, but I wanted to make sure you saw it too...
http://www.health-science-spirit.com/borax.htm
Boron deficiency can aggravate so many pain related disorders. It's worth checking into...0 -
baconslave wrote: »Keto has done a lot of things for me, except getting rid of the chronic fatigue.
@Baconslave, you are so knowledgeable about so much stuff, I'm surprised you haven't found this out yet. Chronic fatigue has been strongly linked to magnesium deficiency as some other posters have already pointed out. Suggestions: soak your feet in hot water with Epson salts every day; or take a hot bath with Epson salts every day or might I suggest the use of a very pure form of magnesium oil if you aren't currently using any...:I'm sure you probably already are supplementing Magnesium in some way since you follow LCHF.
http://www.sunfood.com/magnesium-oil-4oz.html
Hope this info helps.0 -
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baconslave wrote: »Keto has done a lot of things for me, except getting rid of the chronic fatigue.
@Baconslave, you are so knowledgeable about so much stuff, I'm surprised you haven't found this out yet. Chronic fatigue has been strongly linked to magnesium deficiency as some other posters have already pointed out. Suggestions: soak your feet in hot water with Epson salts every day; or take a hot bath with Epson salts every day or might I suggest the use of a very pure form of magnesium oil if you aren't currently using any...:I'm sure you probably already are supplementing Magnesium in some way since you follow LCHF.
http://www.sunfood.com/magnesium-oil-4oz.html
Hope this info helps.
Yes I've been supplementing mag for awhile.I have a topical oil lined up to use after the pills run out that DH got me for Christmas.0 -
Sunny_Bunny_ wrote: »Hey @KnitOrMiss there is boron in my magnesium supplement.
That's cool. I think that is the minimum effective dose, @Sunny_Bunny_. LOL If you have any continuing joint discomfort, you might look into adding more... What exactly is that stuff, like a powder like a form of Emergen-C as far as how it mixes up? It looks interesting. Do you have a link to where you get it? I'm not currently taking a multi - as most of my blood work showed specific areas of deficiency...0
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