January 3, 2014 at 2:55 am #14451
This is a problem that has stumped dozens of docs, and several online gurus and/or WAPF or Paleo-type groups, so if anyone can help me, I’ll be indebted forever and put you in my will. Not much in there, but you’ll get it. :)
In all due seriousness, I’m very sick — have been ill with CFS for 15 years feel like just giving up many times — just so sick of being sick, and now use a wheelchair probably 50% of the time as it’s become so painful to walk on skin and bones.
I know I need to eat more nutrient dense foods and calories?yet every time I try to increase fats in my meals, I get this very odd ‘restless leg’ type reaction in my left leg(!), and sometimes in both.
If that doesn’t happen, I’ll still get what seems to be a circulation-related neuropathy in my feet and toes?which goes away when I cut back on the fat. And by ‘back’, I mean to practically zero fat?which I know isn’t good. My anxiety is very high (as is cortisol during parts of the day), and I’ve lost muscle (and fat) during the past 3 years and was too skinny to begin with.
I have better luck with fish oil, or just fish, but olive oil, butter, palm oil, and of course the vegetable oils, all cause a LOT of discomfort, which just make my anxiety and stress levels that much worse.
I’ve been taking betaine HCL for 10 years, and also digestive enzymes, and recently have started ox bile extract, but haven’t really noticed a difference.
Any suggestions would be very much appreciated.January 3, 2014 at 5:00 pm #14459ErinElizabethParticipant
I’m in a very different place than you are so this may not be helpful but just in case I thought I’d share my experiences with “restless legs.”
I’ve had it for years and it cropped up sporadically with no rhyme or reason that I could detect until after seeing a comment by Matt on a blog post. Restless legs for me is VERY closely correlated with a rich dinner and insufficient fluid to counter balance it. If the balance is off enough I can’t even sit down in the evening. So I’m trying to eat my fattier/heavier meals earlier in the day and lighter meals in the evening now with more fruity cobbler/pie kinds of desserts than ice cream/cake kinds.
I don’t know what quantities of fat your introducing and how but I wonder if starting out with small amounts just in the morning and increasing slowly might help give your body a chance to adjust.
I hope someone else has some suggestions for you as mine was really a stab in the dark, best of luck to you in your search for answers!January 3, 2014 at 6:47 pm #14467
Thanks Erin for your reply — I appreciate it. I don’t know if you’re in so much of a different place at least when it comes to restless legs — you sound like you have the same issue as me, which I think is circulation related(?), but I can get it even during the day?in the morning, or at least by noon, if I have “too much” (which isn’t much at all) fat or “rich food”.
I just this morning read the one needs pantothenic acid to metabolize fats, which is something I’ve avoided for 3 years on the recommendation from a ‘copper toxicity specialist’ (???), who said that pantothenic acid ‘stimulates’ the adrenals, and mine were already overstimulated.
I’m guessing she was wrong. ???January 3, 2014 at 7:04 pm #14468ErinElizabethParticipant
I had to look up pantothenic acid as I knew nothing. While we know how reliable wikipedia is as a research source ;) it looks to me like that must have been a really hard vitamin to avoid and a lot of its deficiency symptoms overlap with yours so while if the advice is only three years old it probably isn’t to blame, I doubt its avoidance has helped. I don’t know anything about copper toxicity either but it seems to me that advice to avoid something that’s in darn near EVERYTHING isn’t very useful advice.
There is SO much information out there it is so hard to figure out what actually applies to each of us as individuals. I wish there was just a handbook “Do this and you’ll be fine” that actually was right.January 5, 2014 at 12:35 am #14503DavidModerator
I’m curious why you feel you need to eat more fat. If fat in your diet makes you feel ill in various ways, maybe your body is telling you something.
If your concern is that are getting too skinny and need extra calories, there are other ways to eat more, sugar and refined starches being two options. These aren’t nutrient-dense foods, but most fats aren’t nutrient dense either. (Adequate protein is also important, but I’m sure you know that already.)
What really struck me about your post is that you are often wheelchair bound. I feel for you. I imagine that regaining some strength is probably about your number one priority at this point. If exercise is truly impossible, and your muscle is continuing to waste away, I hope you’ve talked to a doctor about your options. Honestly, in a condition like the one you describe, you might think about anabolic hormones. I know they’re sometimes prescribed for people who are wasting away, such as patients with AIDS. Maybe they would help you (literally) get back on your feet enough to start exercising and rebuilding strength. Just a thought.January 18, 2014 at 3:13 am #14696bananagirl1Participant
this is a random suggestion but you could try unrefined coconut oil. it’s very high in medium-chain-length fatty acids, raises your metabolism, may help prevent inflammatory stress and bone loss in the body, and when used in moderation, helps reduce body fat because medium-chain fatty acids are used as energy and are not stored in the body. but make sure it’s UNREFINED coconut oil because otherwise the vital antioxidants and phenol compounds will have been removed. i hope this helps!
January 21, 2014 at 2:36 am #14726
- This reply was modified 8 years, 5 months ago by bananagirl1.
Thanks so much for your reply. I’m sorry for my late reply, but I didn’t get any email notification (and the one I did get from Bananagirl ended up in my junk file!).
The reason I believe I need more fat is that fats, including cholesterol are apparently essential for so many functions in the body. Plus, just the lack of fat is making my skin so dry, and I’m losing not only muscle, but have lost a lot of the ‘fat pads’ on the bottoms of my toes, my feet, and even in my fingers. I started taking pantothenic acid about a week ago, as one site said it’s essential for “fat production” (???) and am also trying lecithin and ox bile to see if that helps.
Definitely getting as much starch as my (non-existing) appetite will allow, and also some occasional sugar, but when I tried increasing sugar in late 2012, early 2013, my triglycerides shot up (and my blood pressure, which has always been normal), so my medicaid doc gave me the standard lecture, and I actually took blood pressure meds for about 3 weeks until I was able to bring it down with fish oil, vitamin e and magnesium. The fish oil made me very sensitive to light, so had to cut back and now the BP is up again, although not as much.
The medicaid doc does try her best, but is really hopeless as her hands are probably tied by government watching her every move, so I can ask about hormones, but not sure I can get to far with that. I do very much appreciate your input David?and again sorry for the late reply.January 21, 2014 at 2:40 am #14727
I thank you too for your kind reply. I have tried coconut oil, except the REFINED type (!), because I have a phenol/salicylate intolerance, or at least I’m 80% certain I have one. :)
I do seem to tolerate tiny amounts’so perhaps if I try to slowly increase it it may help get the ball rolling.
I do need to increase my body fat, not decrease it. So far though, the only place it ends up is around my middle?(due to the carbs and possible metabolic syndrome?)’the rest of me is skin and bones. 6’2″ and about 160 lbs, maybe less.
Thanks again GB!January 21, 2014 at 3:16 pm #14730LeightonParticipant
I’m so sorry for the troubles that you are having, and I probably cannot offer much, but I just wanted to throw this out there. Have you been tested for autonomic disorders? Dysautonomia? Orthostatic Intolerance? The list goes on and on, those are just two examples. Autonomic problems are typically difficult to diagnose; a normal MD cannot do anything to diagnose them. I’m not sure where you live, but the Mayo (Rochester, MN) has a great autonomic clinic/department. A good place to start, may be with the utilization of compression hose. If your restless leg issues are caused by a problem with your circulation, these may help. Ideally, they need to be waist high. If you cannot tolerate those, thigh high is second best. I would not recommend knee high, they cannot get the blood back to your core sufficiently. They need to be medical grade, and will cost approximately $160.00 USD. (If you are diagnosed with a problem regarding your circulation, insurance will often cover them.) Also, you need to wash them after every use. If you do not the oils in your skin will break down the compression.
Sorry, I cannot offer more. I wish you the best, and please let us know if there is anything else we can do!January 22, 2014 at 10:52 pm #14744
Thanks so much for your reply, I really appreciate it.
I actually don’t have orthostatic intolerance, although I do suppose I have some symptoms of dysautonomia — like anxiety, delayed gastric emptying, and of course (more than) ‘excessive fatigue’.
But no dizziness or faint feeling when standing, in fact my BP has gone up during the last 2 years or so as I increased my sugar intake. So I’ve countered that with magnesium, fish oil, and vitamin e, which brought it down to the normal range within about a month.
This feeling (or sometimes lack of feeling) in my legs and feet is hard to describe, but it does feel worse when my blood vessels are constricted. So while I’ve read about the compression hose, I have a feeling that they would just make things worse but maybe I’m missing something, or misunderstanding something about them?
It is quite common for peeps with ME/CFS to have orthostatic intolerance and dysautonomia, which I guess can come as a result of low blood volume, and yes, many have found compression hose very helpful. With my situation, it feels like not only low blood volume, but low blood levels — you know, like I’m about a quart low — not enough to go around?
I’ve tested positive on 2 (out of 4) occasions for parasites over the last 11 years, and have recently found info that suggests that 90% of testing misses parasites, so am wondering if perhaps that might be an issue? Maybe I have parasites eating my food or screwing up digestion in some way — perhaps in the gallbladder(?) or liver or the gut as well?
I know’that sounds like another scam diagnosis, but it just might be something worth pursuing??
Thanks Leighton.January 24, 2014 at 6:34 pm #14757LeightonParticipant
Hi again DannyJ,
Yea, you can actually have an elevated bp and still have issues with orthostatic intolerance–however, it is less common. You mentioned that you are taking fish oil (which is fat). Maybe, if you seem to be tolerating it well, try adding fatty fish to your diet? I know that not everyone on this website is a fan of fats that are not saturated, but I would explore all options that may work for you.
No, you are not misunderstanding the compression hose. Some people love them, others hate them. I guess that’s just like anything else. The only other thing that I could think of, if you try them, is that you want them to be tight at the ankle and not so tight through the calf. Unfortunately, even well meaning medical professionals will often fit them incorrectly.
Hmmmmm. You feel like you are actually low in blood? How are your red blood cells? Any abnormalities? That would be too simple a solution, but you never know. I would think that any movement you could do would be beneficial (just to get things somewhat circulating), but I realize with CFS this is often a horrible suggestion.
I would absolutely look into parasites. When the traditional medical community has completely failed you, I would look into anything and everything. Of course, taking everything with a grain of salt and doing a proper cost/benefit–risk/reward analysis. And yes, the gallbladder is a common offender in the inability to tolerate fats.
For whatever it’s worth, about a decade ago, I lost an obscene amount of weight. I was eating and eating and I literally melted (being that your appetite is reduced, I realize that you are in a different situation). At this same time, I had surpassed my ability to tolerate stress and I felt like something was eating me. I saw an endocrinologist and my cortisol levels were horribly elevated (blood, urine and salivary). He told me to, “Calm down and do yoga.” (Great, thanks, I never thought of that.) Anyway, it was not until my stress level was reduced that the feeling of being eaten went away and I was able to regain some weight. Most likely your weight loss is occurring because of other factors, but maybe something is really eating you? Unlikely, but an interesting thought.
All the best, DannyJ. I hope you have a good weekend.February 1, 2014 at 9:18 pm #14882TrueVisionParticipant
Regarding restless legs & fat. You might try NOW MCT oil. It is liquid. David Apray ( Bulletin Proof Coffee website) sells a super charged MCT oil. I have suffered from restless legs on and off for years. I realized that urinating so much was causing my electrolytes to become unbalanced, which was causing restless legs. I took potassium, zinc, and magnesium. Some people add calcium. It works most of the time. I read in one of Matt’s books that potassium isn’t what you should take, but rather salt. He also mentioned in an interview that after exercising to get back your balance to drink things like Gatorade, but said the soda, Sierra Mist, was the best. Another thing I discovered about restless legs was that your pelvic could be unbalanced, putting pressure on your legs. Not many people know about this and it is a situation that you don’t know you have. Finally, the last cause could be your lower back. If you hip bones are not supported properly, it puts pressure on your legs, causing problems. Chairs and couches don’t offer that support. Same as mattresses. Try sitting on a small board that won’t allow your hips to drop, which puts pressure your lower back. Stand up often.February 10, 2014 at 11:46 pm #15093
Thanks again for your reply. I meant to reply ages ago (time flies when you’re not having fun!), and can’t believe it’s already been more than 2 weeks?my apologies.
I’m not sure if I have any RBC abnormalitiesI think my medicaid doc ruled out things like pernicious anemia (at least based on their lab’s norms), but that was a few years ago, and when I looked online, I was considered anemic for a male. But it is common with ME/CFS to have low blood volume and low RBC mass:
I am eating salmon probably twice a week, and lately, sometimes I seem to tolerate a little bit of pumpkin seeds — for the parasites(?) — but like you say, we need saturated fats, and those I can’t seem to tolerate, with the exception of maybe one half-cup of LOW-fat ice cream every two weeks or so.
Thanks too for your input re a possible parasite problem. SOMETHING has to be interfering with proper digestion and/or sucking my blood dry’so I’m trying to look into it, on limited funds. Thanks Leighton!
And TrueVision — thank you as well for your input. I haven’t tried MCT oil in years?might be worth a shot?and also the Sierra Mist. I’ll have to look that up. I do worry if I have some sort of ‘syndrome-x-pre-diabetes thing’ though, as when I tried to do the full Matt protocol a year ago or so, my triglycerides shot up quite high, as did my blood pressure. So complicated isn’t it.
Also I have thought about maybe lower back issues and pelvic bones putting pressure on the legs in an odd way. Was thinking about “gentle” chiropractic stuff — if there is such a thing — to help with that. And have wondered about my mattress as well?
Anyway, I really appreciate your replies’thanks again. :)February 11, 2014 at 12:36 pm #15097TinaTParticipant
I’m not help on most of this discussion, but if you really think parasites might be an issue, you could look into Diatomaceous Earth (DE). Make sure you get Food Grade. It’s a good source of silica (might see if that interferes with anything else you’re taking), and the powder will basically desiccate any big bugs in the gut – from what I’ve read, it leaves the good bugs alone. You have to handle the powder carefully, it’s really fine (like ash), and you don’t want to inhale it.
Hope you find something that works!!February 11, 2014 at 1:15 pm #15102TrueVisionParticipant
Leighton: I’m following another Ray Peat eating plan. You are suppose to eliminate all grains, veggies that grow above the ground and nuts. The gut has to be allowed to heal. The foods mentioned have toxins in them to dissuade animals from eating them. Below ground veggies fight fungus and viral infections. Get sugar from fruits. The pumpkin seeds are probably disturbing your gut. Also, no salmon or sword fish, they contain PUFAs that upset your system. If you have parasites look at the product called three-lac. I have recommended it to a dozen people, who had success with it. Easy to take. Best buy might be on drugstore.com But I think your issues are digestive
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