This post is aimed mainly at people with ME but some elements are relevant to fibromyalgia and POTS.
Most people with ME (pwme) experience problems walking. The spectrum of this difficulty is wide, from people who don’t have the muscle power to get out of bed to people who appear averagely fit but who were previously athlete level (so feel limited). Symptoms associated with this may be weakness (legs are shaky or give way), pain (all over hot achiness, stiffness, pulling muscles easily, back pain being upright), heavy “concrete legs”, muscle spasms, and fatigue or reduced endurance.
For the last 3 years I haven’t been able to walk more than a few metres without my legs turning to concrete or giving way. Obviously this is highly disabling and I would like to get to some practical solutions. This post is an attempt to organise different approaches that may help, in line with the reasons researchers give for our problems walking. My focus is on the tips which could be inferred from the relevant research: this isn’t an attempt to give a full explanation of the muscle problems in ME.
Table of Contents:
mitochondria problems and what may help
Dr Myhill Cocktail;
fatigue and pacing;
adapting to not walking.
(yes I’ve worked out how to link within a WordPress post!)
I’ll try to be as brief as possible, focusing on practical tips and cheap alternatives.
It is important to note that I am writing from this patient perspective. I have no background knowledge in muscle biochemistry and don’t fully understand the underlying mechanisms. Don’t use any of these suggestions without double checking a more authoritative source.
Mitochondria generate energy in cells, they are often called cell powerhouses. We seem to have some problems with our mitochondria although it is unclear whether this is at the level of it being a mitochondrial Disease or just dysfunction.
I will outline some things you can try that are likely to help with mitochondrial function.
On her website Sarah Myhill details this mitochondria supplement combination:
A typical regime, if the gut works perfectly, would include magnesium 300mgs by mouth (but ideally magnesium by injection), co enzyme Q 10 200mgs, acetyl L carnitine 2 grams, D-ribose 15 gms, niacinamide 1500 mgs and vitamin B12 1mg by mouth (ideally by injection). These should be taken in addition to the Basic Package and, where tests indicate, extra anti-oxidants.
If you take all of this regularly it is going to cost quite a bit. In fact it is prohibitive for anyone living on benefits.
We can easily get into a trap of taking supplements because they help other people. This is why I think it is important to introduce things one at a time and try to measure the effects.
Also you can get some benefit from food (and you have to eat anyway). To start with stabilise blood sugar (eg balance sugars and carbs with protein), look at fatty acid ratios, trace minerals and anti-oxidants.
Food that may help: olive oil, avocados, coconut, nuts, seeds, animal products, lemon, lime, pink salts, turmeric, rosemary, ginger, oregano, cinnamon, cloves.
My Diet Study Review including info on B12 and Magnesium
CoQ10 is a mitochondria supplement that many pwme and fibromyalgia use. It tends to be on the expensive side though, so it would seem important to work out whether it really works for you personally.
Mendus has just started a random order, placebo controlled study into a type of CoQ10 called MitoQ. The first cohort of 50 CFS (ME) patients and first 50 fibromyalgia patients to sign up will get sent 6 weeks of placebo pills and 6 weeks of MitoQ for free, in a blinded order. If you missed that cohort, you can still sign up for a study but you will have to pay (a discount rate) for the MitoQ. With Mendus studies you get to see your personal results at the end.
Take part: The places are going very quickly and the CFS placebo study has filled up as I’ve been writing this. To take part in the fibromyalgia free, placebo study or the discounted CFS study email MitoQ at this address firstname.lastname@example.org with the subject heading “Study Enrollment CFS” or “Study Enrollment FM” saying you want to take part. Then go to www.mendus.org/mitoq-study-home.html and follow the instructions. You need to return the consent form within 48 hours. You complete it at home so it could be accessible to those with Severe ME (who are otherwise underrepresented in research).
Read more: Chronic Fatigue Syndrome, Fibromyalgia and Mitchondrial Disorders: A Comparison Plus the MitoQ Trial Begins
D-ribose is a type of sugar that is used in mitochondria processes. I’ve previously taken part in a Mendus study on D-ribose. We were trying to include a stevia placebo as comparison, which I didn’t tolerate, and I had to stop the experiment. I did get some results, just not enough for a proper statistical comparison at an individual level.
These are my results, the baseline then 3 weeks on d-ribose:
The pain result is interesting, but obviously not a lot of data to go on. I also did a couple of cognitive tests (digit span which shows working memory, and feature matching for concentration).
|Baseline||D-ribose wk 1||D-ribose wk2||D-ribose wk 3||Placebo wk 1|
|Digit span lying:||6||6||5||6||7|
|Digit span sitting:||5||5||6||6||7|
|Feature match lying:||90||132||98||122||106|
|Feature match sitting:||81||132||116||144||80|
This is off topic (not walking) but the Concentration test showed quite a substantial increase on d-ribose which then went again with the placebo (indicating it wasn’t a learning effect). I’m now taking d-ribose with tea or coffee or electrolytes.
Take part: this is the link for this study if you want to join in: www.mendus.org/d-ribose-study
Julia Newton’s team recently published a paper which showed that 5′ AMP-activated protein kinase (AMPK) doesn’t activate normally during exercise in CFS. This is related to mitochondrial function and how we use glucose.
Things that could help:
Berberine can be bought as a supplement but comes from plants, it is also a broad spectrum antimicrobial and some pwme use it for things like candida; Coptis Chinensis (TCM) contains berberine, may help IBS; Goat’s Rue (Galega officinalis) a pretty herb that diabetes drug metformin is derived from; panax ginseng (TCM) also used for immunity; curcumin (also in turmeric and ginger) has painkilling qualities; green tea; black tea, snow lotus
Salicylate based drugs (aspirin is in this category but I’m confused about whether it helps or not)
Quercetin which is in onions, red grapes, wine, ginkgo biloba. It may be bad for memory. Combine with green tea and caffeine for improved exercise performance? Shows improved VO2 Max combined with other antioxidants. Has low bioavailability.
Resveratrol which is in wines especially red Bordeaux (but alcohol generally has bad effects for pwme so you may need to use in cooking which reduces resveratrol by half); grapes; raspberries; plums; grape tomatoes; peanuts and cocoa powder (yum!)
Alpha-Lipoic Acid is a mitochondrial fatty acid that is also anti-oxidant. Like most of these things it is most straightforward to buy as a supplement, but cheapest in food. It’s in spinach, kidney, broccoli, tomato.
Substances which protect plants against infection seem to increase AMPK.
A self-experiment by Mark Vink, a medical doctor who now has Severe ME, was published last month: The Aerobic Energy Production and the Lactic Acid Excretion are both Impeded in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. He was able to measure his own lactic acid levels before and after walking to the bathroom and found an abnormal increase. To him this is extreme exercise, which I can empathise with as I have been at that level and sometimes still have days like that.
It might sound strange but walking back and forth to the toilet is more difficult than running a marathon. However if you see my lactate levels of 8.0 mmol/l around the 5 minute mark, and 11.8 mmol/l around the 30 minutes mark, both produced by the same exercise, it means that the actual lactate production for this very trivial exercise is 19.8 mmol/l. That is a level that many professional athletes will never / not often reach and that sort of level of lactate makes it easy to understand why this trivial walk is so strenuous an exercise for me and more difficult than running a marathon. And it is therefore no wonder that I have severe loss of muscle power combined with severe muscle pain from this trivial walk to the toilet and back.
Lactic Acid may relate back to the mitochondria problems as well, and could be more a sign that something is wrong rather than the problem itself. You can buy gadgets to measure lactic acid at home, but they are a little expensive. It may be easier to remember back to doing extreme exercise before ME and try to think if it feels the same. I don’t think for me it is the same. When I go weak or get concrete legs I don’t feel pain at the time. When I get abnormal pain it tends to be all over rather than in the leg muscles.
Things that may help
Bicarbonate Soda Loading (aka sodium bicarb and baking soda) is something athletes do to reduce lactic acid. The extra sodium may help with other things too (below). Be aware that pwme often have low stomach acid though and this could exasperate this problem (lemon and ginger tea or cider vinegar before meals can help with that but not at the same time as bicarb).
Avoid Anaerobic Threshold – see this post – work out your anaerobic threshold heart rate (or use an estimate) and wear a heart rate monitor to stay under. Lactic Acid is produced over the anaerobic threshold so this should be preventative.
Alkaline Diet – I’m a bit wary of the Alkaline Diet as it may over promise. People say it helps to reduce general body acidity though and it is fairly healthy in itself.
Electrolyte imbalance can cause a range of symptoms which make walking more difficult such as weakness, pain and fatigue. This is relatively easy and quick to correct with salts and electrolyte drinks, but may be worth getting checked with your doctor if this is a frequent problem. For those of us with POTS, retaining enough salt is difficult and there are also prescription drugs that can help with this (I’ll cover this in other posts). Some people find magnesium good for muscle pain (but see this post, it may also increase pain).
Things that may help
Eat something salty such as crisps, olives, sundried tomatos, bacon
Balance potassium and sodium intake as when you have too much of one you lose the other (and wee frequently). Sources of potassium include avocados, bananas and potato. Lo Salt is high in potassium
Try special salts such as pink Himalayan salts which contains a greater range of minerals
Epsom Salt baths if you can tolerate it
Autoimmune issues may be what causes a lot of us dysautonomia issues including orthostatic intolerance and POTS. These are more accurately problems with standing but that obviously causes difficulty walking!
Things that may help
Vasoconstrictors can help prevent blood pooling eg caffeine, chamomile, cypress oil
Hypertensives can raise blood pressure eg cocoa extract (chocolate), rosemary, caffeine
Limit vasodilators or things which reduce blood pressure. Unfortunately this includes a lot of things that are otherwise helpful such as CoQ10, garlic, fish oils, valerian, melatonin
Shouting About POTS (this post covers tips on how to get diagnosed and some management ideas)
I had a high creatine kinase serum (CK) result from a day that I was experiencing what I label as “myalgia” (every muscle feeling achy and inflammed). Creatine kinase is a general measure of muscle damage. I hadn’t done anything a well person would consider exercise and I hadn’t injured myself. On a non-achy day retest I was back to normal (10x less). This doesn’t give much information about what is going on but it does mean that there is objective damage in my muscles. In other words, it cannot be attributed to false illness beliefs or a CNS misinterpretation of pain signals. I have heard other people with ME say they have high CK but I can’t find any papers about it, it is unusual to get it tested.
Things that may help
Painkillers are an obvious answer to deal with muscle pain. Personally I’m cautious though because if actual muscle damage is going on I don’t want to block out the pain and increase the damage.
CoQ10 (see above) has been found to prevent creatine kinase increase
L-Carnitine (also in Myhill’s list) can reduce creatine kinase damage and reduce heart rate
Read more: L-Carnitine -down Ck Down Bpm Fibro Scientific Review on Usage, Dosage, Side Effects | Examine.com
I cover Activity Management in a number of posts so I won’t go into it too much here. Post Exertional Malaise will limit future walking if activity isn’t limited in the present. This can apply even if you feel OK at the time. It is a process of getting to know your own limits.
Things that may help
Pedometer – getting a pedometer to objectively measure how many steps you do each day and trying to keep it more even rather than high one day and then low
Heart rate – these things all overlap, keeping under your anaerobic threshold can prevent PEM, this may be tied up in the lactic acid stuff and in turn mitochondria (above)
Baseline – keep a diary to establish a baseline if you have a boom and bust cycle
Realistically you’re not likely to implement these changes and suddenly do a hike from Land’s End to John O Groats! There is likely to be a phase where you have to adapt to less walking. Try to take practical steps so this has as little impact on your quality of life as possible.
Things that may help
Electric wheelchair/scooter even if you can walk a bit this can prolong activities and make life a bit more interesting
Blue Badge (or other parking perks) it is tricky to get these for ME at the time you need them – the criteria often means you’re housebound and not parking anywhere! They are useful though for getting closer to where you need to be. You don’t want to be wasting spoons walking through a car park.
Home delivery – don’t waste your walking on things you need to do but don’t enjoy. Get your shopping delivered and so on.
There’s a lot in this post. From doing this research I’m going to start with MitoQ or CoQ10 and later add in L-Carnitine (I’m already taking d-ribose and B12) so I’m getting there gradually in terms of the mitochondria cocktail. I also keep an eye on magnesium, B12 and salts in my diet. I have a POTS appointment coming up and I’m hoping to be prescribed a vasoconstrictor or something to help me retain salt.
Writing this post involved looking at an overview of muscle problems in ME and fibromyalgia. Two things strike me. Firstly that almost everything can somehow be linked back to mitochondria function and secondly that there is objective evidence of dysfunction in muscles when people look in the right places.