Learn about series- It is vital Electrolytes are corrected as you recover from the dysfunctional body state that is ME/CFS.

[CSMLSM]

My own experience tells me how important these elements are to our health and that we are depleted of them by our dysfunctional state ME/CFS.

Have you had times a treatment has been working and you get a stall, maybe your electrolytes are depleted because of the new and more vigorous activity that you will ultimately be doing as a result of any improvements gained from the original treatment that was helping.

Here are some videos that help explain these Electolytes and what is involved in the lacking of these nutrients.

I myself have just started taking potassium citrate recently. I believe my attraction to coffee in recent times was because it contains potassium. I had recently cut right down as it is not good for adrenals when trying to prevent them being stimulated artificially (caffeine). This lead to less energy, less stamina, restless legs abit (might be related) adding potassium citrate seemed to correct the situation.

Hope these videos are helpful,
CSMLSM

POTASSIUM: The Most Important Electrolyte Yet an Ignored Epidemic - Dr. Berg - YouTube
Dr. Eric Berg DC Jan 2, 2022 15.50min

Learn more about potassium and why it’s the most important electrolyte.
0:00 Introduction: Potassium is the most important electrolyte
0:10 Why potassium is important
0:40 What is an electrolyte?
3:52 What does potassium do?
9:35 Potassium deficiency causes
15:34 Are you consuming enough salad?

Today, I will cover what you need to know about potassium.

An electrolyte is an electrically charged mineral. The body uses electrolytes for various things, such as:
• To help conduct nerve impulses
• To help contract and relax muscles
• To help maintain pH in the body
• To help push fluid through the body

30% of all of the energy in the body comes from the sodium-potassium pump. The purpose of the pump is basically to maintain cellular energy.

What does potassium do?:
• It provides energy
• It provides endurance during exercise
• It helps prevent cramping
• It helps prevent arrhythmias
• It helps prevent twitching
• It helps prevent tremors
• It helps prevent constipation
• It helps prevent vascular calcification
• It helps prevent insomnia
• It helps prevent insulin resistance
• It helps prevent high blood pressure
• It protects the kidneys
• It helps prevent edema
• It counters sodium toxicity
• It helps make stomach acid
• It helps prevent gout

Causes of a potassium deficiency:
• A lack of potassium in the diet
• Vomiting
• Diarrhea
• Diuretics
• Stress
• Sugar
• Refined carbs
• Keto
• Alcohol
• Consuming excess fluids
• Sweating
• Diabetes
• Fasting

The best sources of potassium:
• Leafy greens (7-10 cups per day)
• Avocados
• Salmon
• Nuts and nut butters
• Seeds
• An electrolyte powder high in potassium

 

[CSMLSM]

What Does an Electrolyte Do? - YouTube
Dr. Eric Berg DC Apr 24, 2021 5.17min

We know electrolytes are important, but what do they actually do? Find out.

Timestamps
0:00 Electrolytes
0:10 What do electrolytes do?
4:30 Bulletproof your immune system *free course

Today I want to cover what electrolytes do, with a special focus on five specific electrolytes.

1. Sodium:
• Hydrates
• Is involved in oxygen transport
• Works with potassium to generate electrical potential (the sodium-potassium pump)
• Decreased sodium can lead to weakness, tiredness, and low endurance

2. Potassium:
• Supports the nerve and muscle interaction
• Works with sodium to generate electrical potential (the sodium-potassium pump)
• Decreased potassium can lead to weakness and tiredness

3. Magnesium:
• Controls the absorption of sodium and potassium
• Is associated with oxygen
• Supports the relaxation of the muscle
• May help prevent muscle cramps
• May be necessary for workouts (especially long or intense workouts)
• Decreased magnesium may lead to muscle cramps and low endurance

4. Calcium:
• Supports muscle contraction
• Supports neuromuscular excitability
• Decreased calcium can lead to tetany, muscle cramps, and skeletal muscle weakness

5. Chloride:
• Supports hydration

FREE COURSE➜ ➜ http://bit.ly/BulletproofImmuneSystem...

Dr. Eric Berg DC Bio:
Dr. Berg, age 56, is a chiropractor who specializes in Healthy Ketosis & Intermittent Fasting. He is the author of the best-selling book The Healthy Keto Plan, and is the Director of Dr. Berg Nutritionals. He no longer practices, but focuses on health education through social media.


Disclaimer:
Dr. Eric Berg received his Doctor of Chiropractic degree from Palmer College of Chiropractic in 1988. His use of “doctor” or “Dr.” in relation to himself solely refers to that degree. Dr. Berg is a licensed chiropractor in Virginia, California, and Louisiana, but he no longer practices chiropractic in any state and does not see patients so he can focus on educating people as a full time activity, yet he maintains an active license. This video is for general informational purposes only. It should not be used to self-diagnose and it is not a substitute for a medical exam, cure, treatment, diagnosis, and prescription or recommendation. It does not create a doctor-patient relationship between Dr. Berg and you. You should not make any change in your health regimen or diet before first consulting a physician and obtaining a medical exam, diagnosis, and recommendation. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition.

#keto #ketodiet #weightloss

Thanks for watching! I hope this helps explain what electrolytes do.

 

[Wishful]

My own experience tells me how important these elements are to our health and that we are depleted of them by our dysfunctional state ME/CFS.

My experience is the opposite. I've never noticed a difference from adding extra electrolytes, or from sweating/urinating more than usual without supplementing electrolytes.

 

[Rufous McKinney]

Thanks for posting, @CSMLSM very useful!

I'm doing a Potassium aspartate, citrate and OROTATE combined.

Recently lost most electrolytes, BP Plummeted to extremely low levels.

BP cuff is now not working, built in senescence. Im stuck unable to purchase another plastic device built to end up at the landfill permanently.

Yesterday: I read about a miracle magnesium that contained SEVEN kinds!

 

[Hip]

FREE COURSE➜ ➜ http://bit.ly/BulletproofImmuneSystem...

Dr. Eric Berg DC Bio:
Dr. Berg, age 56, is a chiropractor who specializes in Healthy Ketosis & Intermittent Fasting. He is the author of the best-selling book The Healthy Keto Plan, and is the Director of Dr. Berg Nutritionals. He no longer practices, but focuses on health education through social media.

Eric Berg (c. 1972) is an American quack, antivaxxer, chiropractor, cholesterol denialist, conspiracy theorist, scientologist and ketogenic diet advocate. Berg promotes pseudoscientific health advice and quackery. Berg is not a medical doctor. Berg practiced chiropractic for 29 years and is now a full-time YouTube blogger

Source: https://rationalwiki.org/wiki/Eric_Berg

 

[Wishful]

Im stuck unable to purchase another plastic device built to end up at the landfill permanently.

Even products that were designed to have parts replaced eventually reach the 'no more parts available' point. I went to buy a replacement chainsaw bar tip, since those were meant to be replaced when they wear out. Well, the chainsaw is several decades old, and still working well, but sorry, no parts available. I might be able to find parts online, at least for a little while longer. Parts for my 1985 Toyota pickup are getting hard to find too. Not much selection available for tires; that might be what forces me to scrap the truck.

I've heard some talk about legislation to require repairability of products, but I don't expect that to pass easily. At some point in the future, it might be possible to have replacement parts printed on demand, so legislation can require production data to be archived and available, and products designed to be repairable, but there's more profit in selling new products.

Oh, for that centuries-old axe, still going strong after several replacement heads and handles.

 

[lenora]

Yes, it's very true that electrolytes are important in our bodies. Even more so as we age.

It's easy to drink too much water, coffee or tea which can leave us low in certain electrolytes. I've had seizures b/c of electrolyte imbalance and now have two different types of epilepsy & I'll be on meds for the rest of my life. So please take this seriously. Of course I'm sure that at age 75 that also plays a role, but.......!

I live in a hot climate so it's even more important to be aware of this problem for those of you who are. A banana a day is a good idea for those who need potassium. Fluid intake may be more moderate than you think....and don't totally give up iodized salt.

Unfortunately a good calcium supply does not prevent osteoporosis in everyone. This has been a problem for me since my late 30's, early 40's....a big problem.

Stomach problems (depending on what they are) can also cause imbalances. Yours, Lenora.

 

[CSMLSM]

Source: https://rationalwiki.org/wiki/Eric_Berg

So is what he says about electrolytes wrong? I felt this particular area was ok and explained well as I always look at multiple sources on a particular subject to get a balanced view. I felt he explained it well. Please tell us all what is wrong with this information so we can benefit from your insight.

 

[CSMLSM]

Yes, it's very true that electrolytes are important in our bodies. Even more so as we age.

It's easy to drink too much water, coffee or tea which can leave us low in certain electrolytes. I've had seizures b/c of electrolyte imbalance and now have two different types of epilepsy & I'll be on meds for the rest of my life. So please take this seriously. Of course I'm sure that at age 75 that also plays a role, but.......!

I live in a hot climate so it's even more important to be aware of this problem for those of you who are. A banana a day is a good idea for those who need potassium. Fluid intake may be more moderate than you think....and don't totally give up iodized salt.

Unfortunately a good calcium supply does not prevent osteoporosis in everyone. This has been a problem for me since my late 30's, early 40's....a big problem.

Stomach problems (depending on what they are) can also cause imbalances. Yours, Lenora.

I am sorry to hear about the epilepsy you have to suffer it is a brutal condition. I would just like to share that vitamin K2 helps with absorbing calcium into the bones. It is suggested to take K2 when taking high vitamin D because of the chance of removing calcium from the bones because of the high D. I believe older people are given calcium and D tablets but not given K2 with it. Just something to think about maybe.
Yes stomach issues, improper digestion and absorption can cause so many issues, especially low vitamin B12. Our immune system and nervous system play a large part in our intestines and when one is off it affects the others. We really should class this condition as Neuro/Immune/Gastro.

 

[lenora]

Hello @C SML SM......Yes, my epilepsy (2 types were brought on slowly b/c of the imbalance of electrolytes.

I also had a heart attack that summer and presently have 7 stents. Autoimmune encephalitis at a later date....and almost nothing was know about it then. Today, there's far more information....although I have reached the point where I'm fighting so many different things.

You're quite correct in saying that calcium, D and K2 all together for proper bone formation. My osteoporosis began early in life....genetic?, certainly not lack of exercise as I walked everywhere when young and continued that and bike riding most of my life. I was eventually able to return to walking (although much less mileage) and just do what I can for myself. I'm presently nursing 5 pelvic fractures and 1 vertebra (second break). So I know that I don't represent the best of us....but I'm also 75. Congenital birth defects left me with other neurological conditions.

I wouldn't worry about what transpires in your world....I'm far from a good example. I agree, first we went from no information to too much information and some of it just plain wrong or confusing. How can I expect even the best of doctors to figure out an answer to this puzzle that is my body. I expect empathy, their knowledge and help as much as possible. Treatments change over the years....at least I've seen that. What was once commonly done years ago has been stopped. We're forever evolving, just like our meds. Today is not forever, but you know that. Good health to you. Yours, Lenora.

 

[CSMLSM]

Hello @C SML SM......Yes, my epilepsy (2 types were brought on slowly b/c of the imbalance of electrolytes.

I also had a heart attack that summer and presently have 7 stents. Autoimmune encephalitis at a later date....and almost nothing was know about it then. Today, there's far more information....although I have reached the point where I'm fighting so many different things.

You're quite correct in saying that calcium, D and K2 all together for proper bone formation. My osteoporosis began early in life....genetic?, certainly not lack of exercise as I walked everywhere when young and continued that and bike riding most of my life. I was eventually able to return to walking (although much less mileage) and just do what I can for myself. I'm presently nursing 5 pelvic fractures and 1 vertebra (second break). So I know that I don't represent the best of us....but I'm also 75. Congenital birth defects left me with other neurological conditions.

I wouldn't worry about what transpires in your world....I'm far from a good example. I agree, first we went from no information to too much information and some of it just plain wrong or confusing. How can I expect even the best of doctors to figure out an answer to this puzzle that is my body. I expect empathy, their knowledge and help as much as possible. Treatments change over the years....at least I've seen that. What was once commonly done years ago has been stopped. We're forever evolving, just like our meds. Today is not forever, but you know that. Good health to you. Yours, Lenora.

It certainly sounds like you are one of the true worriors in this fight against random unfairness that falls on some of us and 75 a true veteran. We must always aim to be the best we can even if that means we manage to smile each day and try to live and feel life in a meaningful way instead of wanting nothing to do with it. Unfortunately we cannot control bad people with bad intentions that seek entertainment from our situations or simply refuse to believe us.
Do you have an ME/CFS diagnosis or chronic fatigue diagnosis I wonder. Epilepsy being so devastating during an episode as I am sure you know too well is a very tiring experience, it drains you. Maybe experiencing ME/CFS symptoms by a mechanism that is different to many with ME/CFS. I personally think so from what you have told me. It is possible that you may benefit from cannabinoid medicine but not what I am using (would not hurt either).
I would in your situation try CBD on its own at first and if live in a legal state (I assume USA) try adding a small amount of THC with the CBD and over time increase until you gain some better control of epilepsy and find the right ratio. There has been some major things in epilepsy with CBD. Infact UK law was even changed (very slightly) because children with epilepsy had to travel abroad to get cannabis oil. It was essentially stopping the severe epilepsy in its tracks and preventing disability and preventing death due to no severe seizures. It happened in the USA and involved these people
The surprising story of medical marijuana and pediatric epilepsy | Josh Stanley | TEDxBoulder - YouTube

Charlotte Figi, the girl who inspired a CBD movement, has died at age 13 - YouTube

Growers & Manufacturers of CW Hemp Oil | Charlotte's Web (charlottesweb.com)

These children however continue to deal with problems obtaining the life saving medication here in the UK despite a law change specifically for them.

Sorry for late response I tend not to come on here very often since I felt not part of the community. Hope you are in good spirits and well.

 

[lenora]

Hello @C SML SM.....It makes me sad to think your last sentence may be true. Please, whatever you do, I (& so many others),want you to feel a part of this community. You're one of us, plain and simple. Add your thoughts and yes, some may attract a negative reaction, but really people don't tend to behave that way. Look at us again, please.

OK, yes I've definitely been diagnosed with CFS and FM both....this was years ago, and things do tend to change as far as symptoms go. At least that has been my experience. Many of us are fighting many things and at my age, I expect certain problems, but one of the worst is severe osteoporosis. I've been basically bedridden (OK, I've had good PT...not more than my body needs or can handle, and do occasionally feel depressed and really, there's just no answer to it). One learns to live with uncertainty....I know that most people feel they can't, but you're stronger than you think.

On the plus side is that my father died from heart disease at age 40. I've had a heart attack, have 7 stents and may have to have more this summer. So I can see that medicine does make amazing progress, albeit slowly.

Yes, epilepsy is a horrid disease and killed my niece at age 25. True, a different type than I have, she was born with the illness, but it can destroy the brain and is a not-great experience, especially for those seeing it. We can feel it coming on, but don't actually remember the full attacks. Falling is my worst problem with it, although my meds control the epilepsy quite well.

I believe in natural medicine, including vitamins, supplements, etc., but also use meds that have proven to be most useful (in my case). I was lucky enough to have a diagnosis right from the beginning....very unusual for those days. I'm very fortunate with my doctors and surgeon. We're all getting older, including them.

Yes, I live in Dallas, TX (from Pennsylvania a very long time ago), and no, marijuana is not legal here. I do have a daughter in CA if I ever get well enough to visit her again. I've tried CBD oil, still have it and it hasn't helped with pain. I've never tried full-on marijuana b/c I saw what starting with it led to with my brothers and sisters. Marijuana and LSD are a very bad combo. I've discussed it with my neurologist (who has a very bad home situation himself...someone quite ill) and he's very accepting of other methods, but has been met with failure. I would eat a brownie with it at my daughter's, for example. After all, if it helps it helps.
A friend sent me a liniment containing CBD and it often helped....so I'm not against it.

Unfortunately both the laws and medicine are slow to change. A lot of proof is needed in the form of research and one study, especially a small one, doesn't help much. A few confirming the same thing is what we're after. This takes both serious researchers, expensive equipment and a lot of money...not just from the govt., but from even each of us. Like everything else, we should give what we can. That's all.

Yes, it's a random illness, but isn't everything? At least until we have a reason. Which country are you in? My husband is from Bath and went to school at the U. of Manchester. We also lived in Canada. My mother was a British war bride and was in the war prior to the outbreak of it. So I'm a child of both countries. I know the U.K. very well and miss our yearly visits.

As per usual, I've gone on far too long. Please join us fulltime....you're most welcome. Bring your problems and you may find answers to them....if nothing else, you'll find compassion. Yours, Lenora.

 

[CSMLSM]

Hello @C SML SM.....It makes me sad to think your last sentence may be true. Please, whatever you do, I (& so many others),want you to feel a part of this community. You're one of us, plain and simple. Add your thoughts and yes, some may attract a negative reaction, but really people don't tend to behave that way. Look at us again, please.

OK, yes I've definitely been diagnosed with CFS and FM both....this was years ago, and things do tend to change as far as symptoms go. At least that has been my experience. Many of us are fighting many things and at my age, I expect certain problems, but one of the worst is severe osteoporosis. I've been basically bedridden (OK, I've had good PT...not more than my body needs or can handle, and do occasionally feel depressed and really, there's just no answer to it). One learns to live with uncertainty....I know that most people feel they can't, but you're stronger than you think.

On the plus side is that my father died from heart disease at age 40. I've had a heart attack, have 7 stents and may have to have more this summer. So I can see that medicine does make amazing progress, albeit slowly.

Yes, epilepsy is a horrid disease and killed my niece at age 25. True, a different type than I have, she was born with the illness, but it can destroy the brain and is a not-great experience, especially for those seeing it. We can feel it coming on, but don't actually remember the full attacks. Falling is my worst problem with it, although my meds control the epilepsy quite well.

I believe in natural medicine, including vitamins, supplements, etc., but also use meds that have proven to be most useful (in my case). I was lucky enough to have a diagnosis right from the beginning....very unusual for those days. I'm very fortunate with my doctors and surgeon. We're all getting older, including them.

Yes, I live in Dallas, TX (from Pennsylvania a very long time ago), and no, marijuana is not legal here. I do have a daughter in CA if I ever get well enough to visit her again. I've tried CBD oil, still have it and it hasn't helped with pain. I've never tried full-on marijuana b/c I saw what starting with it led to with my brothers and sisters. Marijuana and LSD are a very bad combo. I've discussed it with my neurologist (who has a very bad home situation himself...someone quite ill) and he's very accepting of other methods, but has been met with failure. I would eat a brownie with it at my daughter's, for example. After all, if it helps it helps.
A friend sent me a liniment containing CBD and it often helped....so I'm not against it.

Unfortunately both the laws and medicine are slow to change. A lot of proof is needed in the form of research and one study, especially a small one, doesn't help much. A few confirming the same thing is what we're after. This takes both serious researchers, expensive equipment and a lot of money...not just from the govt., but from even each of us. Like everything else, we should give what we can. That's all.

Yes, it's a random illness, but isn't everything? At least until we have a reason. Which country are you in? My husband is from Bath and went to school at the U. of Manchester. We also lived in Canada. My mother was a British war bride and was in the war prior to the outbreak of it. So I'm a child of both countries. I know the U.K. very well and miss our yearly visits.

As per usual, I've gone on far too long. Please join us fulltime....you're most welcome. Bring your problems and you may find answers to them....if nothing else, you'll find compassion. Yours, Lenora.

Hi,
it is good to hear that you have a good relationship with your Doctors and that you find the care positive. I myself have never had an interested or motivated health care experience and have been neglected and mistreated by many and seen as its all in my head and I am not quite normal, its traumatising just to recall it and it still exists but I do not engage with the healthcare system because of this. Otherwise I get mistreated again or neglected and I get depressed and traumatised all over again, I am a target for abuse where I am by everyone including police, healthcare, benefits because I have Fibro ME/CFS. Because they think its all in my head I am untrustworthy to them so when I am attacked (because I have ME/CFS) I am not believed and the attacker says I did something to them and is believed and I am targeted by police even though I am the victim, I get put in hospital and no one is even arrested because I dare to question why people are abusing me. People can attack me and get away with it and they know it, at least now I may be able to actual fight back some instead of standing up for myself even though I knew how weak I was just to not feel defeated so I did not spiral into suicide.

I live in the UK.

Fortunately there is ample research into the Endogenous Cannabinoid System, it is a research area that has a vast pool of research and enough is known to be sure of what I need to know.
Politicians like to say it needs more research and thats all it is, words not fact, one of the most researched areas there is.
If you ever decide to try tapping into this body system for the benefit I think you will be surprised by the results if you apply the medication in the right way. I would be happy to make suggestions if you do. I understand how it is viewed but CBD and Caryophyllene do not intoxicate. When THC is added to CBD it has less intoxicating effects and even none depending on the ratio used.

I never got to higher education as I was dealing with cognitive dysfunction since as early as I can remember and my memory has always been bad. I had an accident about 2 years after starting an apprenticeship doing 1 a week college and 4 work to develope full on severe ME/CFS until recently which is different to my entire life that I can remember now I can treat what I am dealing with.
Thanks for chatting with me, I do not get to actually communicate with anybody other than my mother.

 

[lenora]

Hello @C SML SM.....Well, I can't fault you for your not finding a good physician as I hear this story over and over again. Such a terrible pity.

For years I suffered from rather severe ME and FM (in addition to many other neurological illnesses). All of these years later my FM and even my ME are somewhat better. I'm sure that something like COVID may put me back at the starting gate again, but we do stay in the race, don't we?

I don't know where you live in the UK, but at 75 yrs. of age I was at the beginning of any knowledge we've gained about this illness. My neurologist, most especially, has been a great help and, as I said, he's unusual in that his thinking is more flexible than most. Too bad that more doctors aren't like him.

Medicine has changed since I was first diagnosed and everything has to have a special code...we've had top-notch insurance and some that was not great. Personally, I find Medicare just fine (and yes, we do have to pay for it and co-insurance policies to go along with it). I've never had a problem and my husband has the same. It's the poor physicians who have the awful job of trying to fit tests, exams, etc., into the coding system.

Where in the UK do you live? There are groups throughout the country for people like us....years ago, things were a different story for everyone. I would suggest joining one and you'll probably hearing many different types of stories....some people recover more facilities than others, and one has to be very open minded about it. The illness can range from mild to moderate to truly severe. We do have to find our threshold and work from there.

I'm glad that marijuana is helping you....I truly am. Like I said, if I'm ever able (kept back now by just other "junk" in my body) to visit my daughter and her family in CA, then I'll try a brownie. I've never even had a cigarette to my lips, so that's out. The names of any oils you can recommend, would be appreciated. If you can't do it here, then a PM to me will be just fine.

I'm probably older than your grandmother, right? I may even have grandchildren your age....it's a time of great flux in life. It always was but this generation has just too many choices and it makes life unnecessarily difficult. They'll be working over the summer. Our other grandchildren (CA) are 13 and 16, so I don't know what their choices will be. Like so many of us, different routes are taken along the way.

I hope you're at least able to concentrate on a movie or have an interest of some sort. Me, perhaps I was meant for this as my main one happens to be books....but in all honesty, I don't retain as much info as before. My social life consists of friends dropping by for coffee. We used to go out for lunch, but that's been curtailed by COVID....each time you feel it's safe, there it is again.

We go through so many stages of life, you'll be surprised. I can only advise you to get as much enjoyment as you possibly can out of music (if that's your interest) and anything that can make you smile. Learn to smile and you'll find more enjoyment in smaller things. Yes, this is an old lady talking, but you know...once upon a time I was young, too. We met, married and built our lives from nothing. We were given nothing and expected nothing. Be thankful for your parents, the roof over your head and food to eat. Make an effort (if you can) to do something each day. You'll feel that you've accomplished something.

This will be observed as "I don't understanf how awful it is" by some....but I do, only too well. We need to hear stories of both sides....the good and the bad. You'll learn how to deal with the medical establishment as the years pass, and little by little (and yes, it will take time) our illness will be accepted and treatments found. A few have been introduced over the years, but it marijuana is helping you, then why not? We have many on here who feel the same way. If you've had friends or even neighbors in the past, have them over for either a cuppa or coffee. It will give your mother a break also to have their company. I know it isn't easy, and I'm losing friends from illness or death rather constantly now.

We have a daughter here in Dallas, thankfully, and the other in CA visits with her family on a very frequent basis. We're fortunate and they think as much of us as we do them. It wasn't always that way, of course, but we all learn to change and adapt. You will also. Have hope....always!! Yours, Lenora

 

[Rufous McKinney]

These children however continue to deal with problems obtaining the life saving medication here in the UK despite a law change specifically for them.

Sorry for late response I tend not to come on here very often since I felt not part of the community. Hope you are in good spirits and well.

sad to hear the little girl Charlotte has passed away.....

Im still experimenting with the Copaiba and topical applications...

Regarding the community here... maybe visit some other threads and get to know some folks if your looking for more social contact and support.

I hope to read through this thread, alot of good information. I cannot read very much at all. I just lose it in a paragraph and wander away. Its so frustrating....

 

[CSMLSM]

Hello @C SML SM.....Well, I can't fault you for your not finding a good physician as I hear this story over and over again. Such a terrible pity.

For years I suffered from rather severe ME and FM (in addition to many other neurological illnesses). All of these years later my FM and even my ME are somewhat better. I'm sure that something like COVID may put me back at the starting gate again, but we do stay in the race, don't we?

I don't know where you live in the UK, but at 75 yrs. of age I was at the beginning of any knowledge we've gained about this illness. My neurologist, most especially, has been a great help and, as I said, he's unusual in that his thinking is more flexible than most. Too bad that more doctors aren't like him.

Medicine has changed since I was first diagnosed and everything has to have a special code...we've had top-notch insurance and some that was not great. Personally, I find Medicare just fine (and yes, we do have to pay for it and co-insurance policies to go along with it). I've never had a problem and my husband has the same. It's the poor physicians who have the awful job of trying to fit tests, exams, etc., into the coding system.

Where in the UK do you live? There are groups throughout the country for people like us....years ago, things were a different story for everyone. I would suggest joining one and you'll probably hearing many different types of stories....some people recover more facilities than others, and one has to be very open minded about it. The illness can range from mild to moderate to truly severe. We do have to find our threshold and work from there.

I'm glad that marijuana is helping you....I truly am. Like I said, if I'm ever able (kept back now by just other "junk" in my body) to visit my daughter and her family in CA, then I'll try a brownie. I've never even had a cigarette to my lips, so that's out. The names of any oils you can recommend, would be appreciated. If you can't do it here, then a PM to me will be just fine.

I'm probably older than your grandmother, right? I may even have grandchildren your age....it's a time of great flux in life. It always was but this generation has just too many choices and it makes life unnecessarily difficult. They'll be working over the summer. Our other grandchildren (CA) are 13 and 16, so I don't know what their choices will be. Like so many of us, different routes are taken along the way.

I hope you're at least able to concentrate on a movie or have an interest of some sort. Me, perhaps I was meant for this as my main one happens to be books....but in all honesty, I don't retain as much info as before. My social life consists of friends dropping by for coffee. We used to go out for lunch, but that's been curtailed by COVID....each time you feel it's safe, there it is again.

We go through so many stages of life, you'll be surprised. I can only advise you to get as much enjoyment as you possibly can out of music (if that's your interest) and anything that can make you smile. Learn to smile and you'll find more enjoyment in smaller things. Yes, this is an old lady talking, but you know...once upon a time I was young, too. We met, married and built our lives from nothing. We were given nothing and expected nothing. Be thankful for your parents, the roof over your head and food to eat. Make an effort (if you can) to do something each day. You'll feel that you've accomplished something.

This will be observed as "I don't understanf how awful it is" by some....but I do, only too well. We need to hear stories of both sides....the good and the bad. You'll learn how to deal with the medical establishment as the years pass, and little by little (and yes, it will take time) our illness will be accepted and treatments found. A few have been introduced over the years, but it marijuana is helping you, then why not? We have many on here who feel the same way. If you've had friends or even neighbors in the past, have them over for either a cuppa or coffee. It will give your mother a break also to have their company. I know it isn't easy, and I'm losing friends from illness or death rather constantly now.

We have a daughter here in Dallas, thankfully, and the other in CA visits with her family on a very frequent basis. We're fortunate and they think as much of us as we do them. It wasn't always that way, of course, but we all learn to change and adapt. You will also. Have hope....always!! Yours, Lenora

Hi again, I think you may have missed some things that I thought you were aware of.
I am in almost full recovery and just trying to share how and why with people and am currently enjoying near full health and am at the end of a nearly forty year fight with this condition started by Croup (EBV) as a small child and progressed as I got older and went severe after an accident at work.
I have been mistreated by all and targeted because I am ill with ME/CFS. I know how to deal with the medical establishment, the problem is they have no respect or anything for me.
I use extracts from cannabis and other plants that contain cannabinoid like molecules for very specific molecules (cannabinoids) to target specific receptors that affect the part of the immune system needed to control ME/CFS.
I come to these conclusions after decades of research and experimentation on myself.
I only come on here in the hope people will listen and get better but reality is stranger than expected and I feel like I am offering a gold bar but I am looked at as offering a turd.
I know all about the severe end of this condition as it has taken the last 20 years from me completely. But now I am well after using every bit of energy I had looking for the answer, just no one else will listen and I feel like I am in the twilight zone.
I only live with my mother because I was severe and no one believed. What else could I do. Even if I could afford health insurance noithing would be covered anyway because its ME/CFS and have to prove everything and cannot. Getting basic benefits almost made me end my life several times over the years because of how I was treated.
Things will only change now Covid has come with Long Covid and this is already happening here but it changes nothing of how people treat the disabled and especially the non visibly disabled.
My friends abandoned me and my neighbours harrass, abuse and assault me while saying nothing is wrong with me, except being crazy of course because I think I have ME/CFS and constantly being abused and isolated dose nothing to a person.
I have not started a family of my own because I was dealing with being to ill to function.
My Mother dose not need a break I look after myself and she was my abuser for many years along with everyone else.

 

[lenora]

Hello.....I'm not upset with you in any manner at all. I just don't know what to say to make your situation better. Well I may, but I'm afraid it may be misconstrued. I do wish you well and I'm so very glad that you're undergoing better health now and hope if continues for the rest of your life. That's from the bottom of my heart. Thank you for trying to help us....and I'll try the oil once again and then again. Yours, Lenora

 

[Lala]

What electrolytes do you all take? I know I need some but there are so many products, many of them filled with unnecessary additives, I am confused...

 

[CSMLSM]

What electrolytes do you all take? I know I need some but there are so many products, many of them filled with unnecessary additives, I am confused...

The 2 main are magnesium and potassium. Others are sodium and calcium bit these are not as much of a worry as calcium will just be taken from bones if needed (not good long term if not consuming calcium) and people consume way too much salt(sodium) for it to be an issue.
Potassium will be difficult to increase if magnesium is initially deficient also. So when magnesium is addressed then the potasium will be able to be increased and brought back to a good level.
I am taking epsom salts (magnesium and sulfur) baths to increase magnesium and later (now) take potasium citrate to increase my potassium. I plan to increase through diet as I improve what I am eating, so supplements for now. Leafy greens are the best source of both I believe especially chard.

 

[CSMLSM]

Hello.....I'm not upset with you in any manner at all. I just don't know what to say to make your situation better. Well I may, but I'm afraid it may be misconstrued. I do wish you well and I'm so very glad that you're undergoing better health now and hope if continues for the rest of your life. That's from the bottom of my heart. Thank you for trying to help us....and I'll try the oil once again and then again. Yours, Lenora

Hi Lenora. Please do not take offence you just were off point on a few things and some were triggering for me. I believe when someone is under the wrong impression it is more respectful to correct than to allow misunderstandings to propagate.