chronic fatigue, and post exertional malaise

[aksundell]

I was diagnosed and start a treatment for B12 deficiency neuropathy, six years ago. I’m one of those people who started to get better and then took a turn for the worse and now I need to inject twice a day. I’ve been suffering with debilitating fatigue, brain fog and increased exhaustion if I push myself too hard, as well as just feeling rubbish all the time. I finally googled the diagnostic criteria for ME/CFS and realize that that’s what is going on with me. That led me to look at my orthostatic intolerance (feeling bad with standing and sitting and better lying down), that’s when I realized I have POTS, postural, orthostatic, tachycardia. I believe these are both problems with my autonomic nervous system as the results of my B12 deficiency. Now that I have a better understanding of my problems, I’m finding some things that help. Mainly, I am just boosting my parasympathetic nervous system through transcutaneous vagal nerve stimulation, and good self-care. Lots of rest and relaxation to keep me from overdoing it, and developing post exertional malaise, or worsening of my symptoms, and to keep me in a healing mode. I’m sharing this in case some of you are in the same boat, and could benefit from my experience. I’d be so happy to answer any questions people have.

[Nackapan]

My daughter was labelled with fibromyalgia and Me .Then low b12 and megobolastic anaemia.

She went on to be diagnosed with POTS by a tilt table test and HR checks on standing.

A high salt diet helps and has to drink alot of water.

Exercises can be taught lije crossing legs and clenching calves before getting up from sitting.

Not to stand on the spot and elevate legs as much as possible.

Shd also got diagnosed with heds ( ehlers danlos) internal hypermobility.

A week of extensive tests at Queens Hospital London.

Now after several trials of self help is on a drug to reduce almost eradicate 'pots episodes'

More than a faint more of a fit .

Scary things that ended uo in a and e too many times .

A drip of saline helping.

Pirates help her.

Swimming.

Also a total change in diet .

And wheelchair use .

And of course b12 injections.

Also needs daily folate .

Hef life is so much better

[Saoirse2016 in reply to Nackapan]

I recently bought Himalayan salt, and I swear it's helping one of my symptoms...not sure which one, but I feel 'better'

[wedgewood]

There is an excellent book by Dr Sarah Myhill about CFS/ ME “It’s Mitochondria not Hypochondria “Obtainable from Amazon.com

[aksundell in reply to wedgewood]

thank you

[Purplegirl2]

thank you for sharing. I’ve found that my energy levels fluctuate, my fatigue is much worse when I’m not getting frequent injections multiple days a week but even still I struggle with fatigue even on an ideal injection schedule. Fatigue, brain fog, poor executive function, daytime sleepiness. I hope more research can be done to understand b12 treatment and why people with PA differ in their ability to benefit from different injection schedules.

[Sid_Arthur in reply to Purplegirl2]

. . . too often, we & . . . our medical 'advisors' are unaware of, & therefore not using the potentially helpful research that's already available ! 😕

For CFS/ME like presentations, & FM too - conditions in which post exertional malaise is usually present - this 2015 paper about B12 💉s & folic acid sups, is one example: ncbi.nlm.nih.gov/pmc/articl... - worth a close study, I'd think . . . even for those well on the way to feeling much better ?

AtB,

Sid 😑

Saturday 27 May 2023, . . . on a 🌞nny summer's day !

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[Cornwaller]

I've started using c8 mct oil and it seems to have really helped with post exercise malaise. I'm only five days into it but so far.....

[autumngreen]

Thank you for sharing, it’s really interesting and helpful. I identify with some of your symptoms and will look into POTS. I’m already having B12 injections which help enormously.

I’m very grateful to this forum, which is very supportive and full of good information.

All the best,

[Jillymo]

My first diagnosis was ME/CFS then FM together with both thyroid and parathyroid. Various autoimmune conditions followed, Lupus was questioned because of two positive results and one boarderline. Antiphospholipid syndrome, Sjogrens and now Raynauds have all added to my decline.

I am in the same boat and also now inject twice daily. The exhaustion is dreadful and now waiting for a synacthen test to test my adrenals. Numerious gastric issues are waiting for investigation but everything is long winded these days and I just feel as if I am constantly treading water.

I have heard the words pace yourself repeatedly over the years but no matter how much I rest I still extremily lathargic.

So move over and let me come aboard. ⛵

[aksundell in reply to Jillymo]

oh Jillymo, so sorry to hear things are headed in the wrong direction for you. My understanding on ME/CFS is that your brain stem is signaling your immune system to activate your primary immune response that makes you feel sick and fatigued. Your brain stem also plays a roll in quieting your perception of less relevant sensory input so people become more distractable and sensitive to light and sound etc. People also become more sensitized to other things in the environment and can develop food intolerances, intolerances to chemicals, electromagnetic fields and even themselves, that is autoimmune disorders. Your brain stem controls your digestion, healing and inflammation via the vagus nerve. So people often have multiple digestive issues and problems with their microbiome. Come aboard! I’d like to recommend you try stimulating the parasympathetic side of your autonomic nervous system which seems to underperforming in me/cfs. People have been doing it for millennia though meditation, yoga, breath work etc, but I’ve had good results using a small electric current from a tens unit. It stopped my brain fog and sick feeling. My mood is fantastically improved. I’ve been smiling and singing and my social anxiety is very low. I’ve had a palsy in my left vocal cord that is now much improved and I have a bit more energy after 3 weeks of use. Apparently our bodies do most of their healing when the parasympathetic nervous system is dominant. This dominance is also required for restorative sleep. You may want to try it. I hope it might help you. youtu.be/Rf9X9OJNbsE(Not working as expected?)

Also, I’ve learned lots of great things from this YouTube channel youtube.com/@RaelanAgle

actually the YouTube channel keeps feeding me good info. I’m hoping we can find our way out of this

[Jillymo in reply to aksundell]

Hi,

I have used similar machines in the past for my back and my feet. I would need to seek medical avice before using on my brain stem due to my sticky blood condition (APs). I have suffered a stroke /TIAs and also have small vessel disease and would be apprehensive of inducing another stroke or even a clot.

I have done many therapies over the years. I attended the Royal homeopathic in London for food allergies (if it was good enough for Princess Diana ) it was good enough for me. I was put on diets for candida and given desensitising injections albeit I still react to gluten.

I did many remeadial therapies including a floatation tank and spent two weeks on a health farm which I enjoyed. I have coped reasonably well with all my various ailments over many years but since suffering heart failure and the B12 deficeincy things have become unbearable.

The neuropathy and raynauds being the worst. I was doing quite well on the injections but since going down with the nuro virus and shingles everything has flared up with a vengence. Sleeping is not an issue I can fall asleep at the drop of a hat. The gastro issues need to be sorted of which I suspect will need surgery. I suspect I am not absorbing but until I am seen by a consultant and scanned I am left in limbo.

I shall be seen by a gastro on the 14th of June - I just hope he knows his stuff when it comes to a complecated patient such as myself.

I do a lot of my relaxation therapy on Utube - I love listening to bilateral beats and tibeten singing bowls. 😘

[aksundell in reply to Jillymo]

I hope he knows his stuff too! And that you find some relief. hugs 🤗

[Showgem]

are you having enough foods high in potassium as b12 injections can lower potassium and cause problems with tiredness and feeling shaky.

[Sid_Arthur in reply to Showgem]

. . . is the easiest, least costly way to get potassium . . . from products like 'lo-salt' . . . which often have a good proportion of potassium chloride ?

Sid 😑

Saturday 27 May 2023, . . . on a 🌞nny summer's day !

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[Showgem in reply to Sid_Arthur]

I would prefer to eat potassium rich food rather than a supplement. I think it’s likely to be easier to absorb and better for you. It may be more expensive but we have to eat anyway so can make it part of our diet.

[Sid_Arthur in reply to Showgem]

. . . I'd hv thought KCl, potassium chloride . . . was as natural a 'food' as one cld get - as much as sodium chloride; salts of the 🌍, . . . you cld say ! 😊

AtB,

Sid 😑

Sunday 28 May 2023 ... - & gently into a 🌞nny pm ! 😊

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[Zac2022]

Back in 2018 I was very sick and diagnosed with ME/ CFS, fibromyalgia and pots. I went private. B12 deficiency was found and I started frequent injections plus cofactors. Then further tests showed bacterial dysbiosis in the gut which had caused widespread vitamin and mineral deficiencies which had caused compromised biochemistry. I did four four years of treatment with functional doctors and all symptoms are now gone. I was housebound for a year but not back working, travelling the world and doing 8 hours a week in the gym. Imo, if b12 deficiency is discovered, more investigation of the gut is needed together with more widespread searching for deficiencies. An OAT test is useful.

[aksundell in reply to Zac2022]

thanks for the recommendation. I’m pretty sure my mitochondrial function is messed up

[Sid_Arthur in reply to Zac2022]

. . . OAT - organic acids testing, . . . hmm, had not heard of that ! Thanks ! 😊 Looks pretty interesting . . . at first glance ! While not inexpensive, . . . could be worth the cost, . . . if it produces info leading to recovery !

This does seem to fit in with cutting out sugars, & the carbs that produce them, . . . which broadly is the food for yeasts, fungi, molds, etc !

Any more info on where you got this done, . . . & whether its at all known in the NHS ? Just begun to look into it . . . ! 😊

AtB,

Sid 😑

Saturday 27 May 2023, . . .

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[Zac2022 in reply to Sid_Arthur]

I found the NHS had no clue. I almost died. The OAT test is about £300 and can be done by most nutritionists or functional doctors. It’s a urine test….gets flown to USA to be tested, hence cost. So useful…..sort of like a biochemical MOT. Shows everything that nots working. I have done it three times.

[Catz72]

Decodeme are still looking for people to take part in following study.

decodeme.org.uk/

[aksundell]

Thanks, that looks great. I would definitely do it if I lived in the UK

[Rosydawn]

Along with all the other good things you are doing, and advice in other replies can I suggest you try a supplement with a course selenium. SELENIUM is a key to helping the mitochondria in every cell in the body like b12.

I find I cannot get enough of some vitamins and minerals because of the poor condition of my gut.

After a year of working with a functional practitioner we discovered that I was deficient in selenium, despite eating a reasonable diet. After a couple of days of supplements my energy levels saw a step change improvement and I could reduce the frequency of my SI injections from every other day to every 4 days unless I know I am going to be exerting myself. I have to keep supplementing though otherwise it all slides backwards.

I was able to start chair yoga (I found using my legs was just too exhausting), this taught me more healing practices. I have now progressed to into the class of beginners but still have to pace myself.

I also have done as others but under guidance from a functional practitioner …

I have replaced my usual sodium table salt with the IODISED TABLE SALT which is potassium iodate a source of potassium and iodine widely available in supermarkets. This also helps with borderline thyroid issue.

Before I do anything that requires more than usual physical activity I eat half a BANANA before and then half a banana afterwards which seems to help with the recovery. I feel like an elite sports athlete but it works. I believe this is high in potassium.

I also regularly (every day I SI) soak in EPSOM SALTS which helps with recovery and keeps the magnesium level up without having to ingest it. Buy it from animal feed store in bulk …much much cheaper than your supermarket fancy packages.

I also did a FODMAP food exercise and discovered that I cannot tolerate oats, high histamine foods and dark green leaves. They were all stopped and my gut has been healing slowly ever since. This means my body is starting to work again and I can now have a small amount of these foods. Through this I discovered citric fruit ( but not juice alternative) at breakfast gives my mental day a real boost. No idea why …

I would suggest you find a functional practitioner if you can afford it and work with them to help you work it all through. I thought it was expensive, but it gave me my life back and that is priceless.

Good luck and I hope you find the help and support you need.

[aksundell in reply to Rosydawn]

Rosydawn, thank you so much for sharing that. I’m so glad you have found some things that help you. I have seen a functional practitioner who wasn’t much help but maybe I’ll try with someone else if my current improvements hit a roadblock. I hope yours continue!

[Polaris in reply to Rosydawn]

Re. “Through this I discovered citric fruit ( but not juice alternative) at breakfast gives my mental day a real boost. No idea why…”

Likely that the citric acid or other bitters help stimulate the body’s digestive system via the tongue to begin the absorption process of B12 🤗

Having had long term stomach problems, it’s why I now take sauerkraut with a meal.   Another alternative that helps absorption is Vogel’s Centaurium.

[Sea-blue]

Thankyou so much for posting . This could be me too. Post exertional malaise , dizziness when standing on the spot. I even forget to breathe .So questions , where’s the best place to look for info on transcutaneous vagal nerve stimulation . And any tips at all from you gratefully recieved. I’d read about dysautonomia too.

[aksundell in reply to Sea-blue]

Dysautonomia International is a great resource dysautonomiainternational.org/

[Sea-blue in reply to aksundell]

Thanks so much

[Sea-blue]

just seen your post further down with the you tube vid thanks, no need to repeat for me

[aksundell in reply to Sea-blue]

good luck. The YouTube algorithm has been feeding my lots of good resources and you can always message me again