What has helped you the most?

[MeSci]

In the UK (and elsewhere) its important to be cautious about claims that CBT and GET can help. Cognitive behavioural therapy and graded exercise therapy have not been shown to produce any substantive improvements in functional capacity, but a small percentage of patients do find they help with their attitude toward their capacity .... but against that a large percentage of patients report they get worse from GET in particular. In surveys this is regularly over 50%. Do investigate this thoroughly if its been offered, there are some great commentaries on this site.

The normal type of CBT, as might be given to anyone with a chronic illness to help them to adjust, adapt, see some positives, etc., may help. But I would stay well clear of the type that usually goes with GET and is designed to persuade patients that their own thoughts and behaviours are keeping them from recovering, and to make them unlearn all the coping mechanisms they have learned. The primary thing they do is to try to break the ('perceived') link between activity and ill-effects, which is exactly what must not be broken.

 

[Debbie23]

I used Natures Own Food State magnesium 100mg - as it is food state it equates to 300mg. I took one daily and it had an impact on my daily foot cramps within a week and completely cured the restless leg over a period of a couple of months. Dr Myhill states that it can take at least 3 months of supplementation to replete a deficiency of any kind, so taking it for at least 3 -6 months to see results can be normal.

I know many people with RLS have been helped with magnesium, but most of the ones I know also had M.E.

http://www.natures-own.co.uk/Biofood-Magnesium-100mg-M565/

Can I ask about these is there any other kind of medication they shouldn't be taken with? Im thinking about getting these for my dad, he gets dreadful restless legs with his ME which affects his sleep. But he's on things like statins. Do you know if he Can he take these too?

 

[justy]

Can I ask about these is there any other kind of medication they shouldn't be taken with? Im thinking about getting these for my dad, he gets dreadful restless legs with his ME which affects his sleep. But he's on things like statins. Do you know if he Can he take these too?

Sorry Debbie, I not sure and wouldn't want to give advice. If im not sure I ask my local pharmacist - either in person or on the phone. He is very helpful and knows a lot about drugs.

 

[Debbie23]

Sorry Debbie, I not sure and wouldn't want to give advice. If im not sure I ask my local pharmacist - either in person or on the phone. He is very helpful and knows a lot about drugs.

Thanks, Justy. I'll get him to ask, hopefully he could take them as they sound like they could really help.

 

[SDSue]

Pacing is the only thing that has really helped me thus far. If I pace properly, I can keep at bay the worst of my symptoms, such as severe headaches, nausea, dizziness, vomiting and diarrhea (TMI ) , muscle pain, tremors, and more.

Most often, when I think I've found a medicine or supplement that works, it works for a few weeks and then fails (either stops working or I get a dangerous side effect).

I am currently trying to find a proper treatment for my POTS, having failed on midodrine, florinef, propranolol, and fluid and salt loading. I am also 2 months into antiviral treatment (fingers crossed).

Unfortunately, like so many, I blew thru way too much time and money prior to seeing a proper ME specialist. If I could go back, that would be my first move. Seems every other doctor has a snake oil that will "cure" "CFS". Interestingly enough, the only ones who don't make such wild claims are the top ME specialists!

No medical treatment ever helped. But I'm learning acceptance now that I'm disabled due to mitochondrial defect which is not curable despite of what many claim about orthomolecular treatments like coq10, d ribose, NADH etc. So it is acceptance for me and trying to live with it the best way possible for me

I was also diagnosed (misdiagnosed?) with a mito disease based on my clinical picture and a citrate synthase test, even though over $4,000 in blood work did not find any deficits in my electron transport chain. As you know, mito diseases are very difficult to diagnose without a muscle biopsy, genetic testing, and/or transport chain deficiencies. Even then the diagnosis isn't always clear unless you are one of the 15-20% of adult mito patients with a known variation such as MELAS.

I say this not to challenge you, but to encourage you to look further if you don't have a definite diagnosis. There are many things that cause mito dysfunction, including ME/CFS, oxygen deprivation, age, nutritional imbalances, physical trauma, toxic chemicals, allergic reactions, radiation, infections, parasites, and more. Many are reversible. If you do indeed have a definite diagnosis, I am so very sorry. Keep in mind however, that mito research is currently one of the top 5 in the US, so hopefully the "there's nothing we can do" won't be true forever! Best wishes to you.

 

[MeSci]

Thanks, Justy. I'll get him to ask, hopefully he could take them as they sound like they could really help.

This page tells you about a few interactions with drugs.

This one does too.

Here is another.

I just put 'magnesium interactions' in a search engine and clicked on these three generally-authoritative sites.

 

[Debbie23]

This page tells you about a few interactions with drugs.

This one does too.

Here is another.

I just put 'magnesium interactions' in a search engine and clicked on these three generally-authoritative sites.

Thank you. I'll have a study when my brain feels a bit more up to it.

Edit to say I've emailed it to my mum actually so she can check for him against the list. Thanks very much!