Is it possible to get better even if you are broke?

[Abrin]

Sorry if this has been asked before and I missed it but does anyone have any free/cheap tips on how to improve ME/CFS symptoms even if it is only 5%?

I can hardly afford to pay rent or buy groceries (it sucks that healthy groceries cost so much more than an unhealthy one...especially when you don't have the energy to prepare things from scratch) so supplements and other medical devices aren't in my budget.

I've tried reading through the forums but I am so overloaded with how much information there is to learn and there really isn't a way that I can sort that information by cost. Everyone on this forum is so smart so I figured it would make the most sense to ask my question here so I could lean on all your expertise to be able to sort through it for me.

I am just hoping for some guidance on where I should be directing my meager financial resources and energy. I completely understand that what works for one person may not work for another but I am open to all suggestions. Thank you so much in advance!

 

[Luke S]

Hi Abrin,

Sorry to hear you're sick AND broke!

To answer your question:
> Is it possible to get better even if you are broke?

If it was, I suppose we'd all be much better, both in terms of our health and our hip pockets

A better question might be:
> Is it possible to get better even if you were extremely rich?

Unfortunately the answer to that is the same as if you're broke: probably not. The science just isn't there yet.

Is it possible to spend thousands of dollars over years and years chasing better health on the faint hope that supplement/drug/therapy XYZ will help? Absolutely. Do I have much to show from doing just that? Nope.

The best thing you can do is (IMO) focus on your lifestyle to alleviate stress as much as possible. There's a bunch of free things you can do on that front, from e.g. trying relaxation and breathing exercises on Youtube, to experimenting with how you sleep (http://www.healthrising.org/blog/20...sing-an-easy-way-to-improve-sleep-and-health/).

There are low costs tools that can help in the day to day as well, e.g. I use a walking stick to take the load off my legs (you get used to it), a stool in the shower, etc. I also do better on a low salicylate/anime diet (doesn't have to be expensive) & very occasionally salt tablets, but that's just me.

It might seem like everyone here is doing great with all their research and supplements etc, but reality for most of us is just not like that. We're all sick, we're all struggling, no one here has definitive answers (and there's a LOT of very dubious speculation and uncritical pseudo-science). But I don't say that to get you down, I say that to encourage you to relax and not become any more broke than you already are

Being sick is deeply frustrating for all of us, but when you say...

> I am just hoping for some guidance on where I should be directing my meager financial resources and energy.

...I'd say direct them towards your mental health. Create a stress-free space for you to exist in (as far as that's possible). Do something fun. Treat yourself. But don't feel you need to chase ghosts with resources you don't have. The research is getting there (e.g. Fluge & Mella's work) and when they know, we'll all know, and then there will be something worth spending money on. Until then, save your cash!

Hope that helps!

 

[AquaFit]

Abrin, you're the best authority on what to pursue according to what you already know about your body and exactly how you need to feel better. The best place to start is to know if you're missing any of the basics. If you were better tomorrow, how would that be different from today? What's your greatest concern right now?

I wasn't compelled to read so much and talk to others until I became really sick and pharmaceuticals made me sicker. I have the history of being involved in helping medical cannabis become a reality in Canada. The movement started out here in the east in the 90s with a few teenagers reading all they could about cannabis and cannabinoid receptors and using their skateboards to deliver pot to mainly AIDS and cancer patients in Toronto. These young fellows (and later gals) worked together, trial and error, developing oils, edibles, sharing information, and their great work and others like them form the fantastic body of knowledge we have about cannabis in North America which scientist have used as directions to study (once gov't finally gave the green light for funded studies to explore the benefits rather than the harms of cannabis). (Bayer developed a synthetic pill, Marinol, but it's never been liked much.) The legal cannabis companies went to these early homegrown "researchers" for advice when they set up their businesses. I'm really proud and overjoyed with what was accomplished. Especially for the children whose seizures are helped by cannabis oils. The original Toronto Compassion Club is still around: http://tccentre.org/ I think it's pretty cool that today's cannabis industry was shaped by patients like us educating ourselves rather than scientists who work with rats all day and clinicians who have a high tolerance for human deaths.

 

[Ladyliegh]

I like AquaFit's comment, no one has the answer to healing CFS\ME yet... However your state of mind is important, it is easy to feel depressed, it is challenging to relax & be happy. But that is important, give yourself the gift of joy, even if it is green & skunky...
My first recovery I focused on doing something that made me happy everyday & it really helped.
That doesn't mean it is all in your head, only that by directing your thoughts to the positive will help facilitate healthy potential.
Positive attracts positive.

 

[Abrin]

Is it possible to spend thousands of dollars over years and years chasing better health on the faint hope that supplement/drug/therapy XYZ will help? Absolutely. Do I have much to show from doing just that? Nope.

Oh my goodness, that makes me so sad to think about. While I am very thankful for your advice that even if I had unlimited money to throw at this problem I'd be no better off.....my heart hurts to know that you had to come by this knowledge by having to experience it personally.

I did find your answer very, very helpful. Thank you so much for sharing it. <3

 

[Abrin]

I have the history of being involved in helping medical cannabis become a reality in Canada.
<snip...>
The original Toronto Compassion Club is still around: http://tccentre.org/ I think it's pretty cool that today's cannabis industry was shaped by patients like us educating ourselves rather than scientists who work with rats all day and clinicians who have a high tolerance for human deaths.

That is really cool!

I am in Canada too, also in the Southern Ontario area.

 

[Abrin]

My first recovery I focused on doing something that made me happy everyday & it really helped.

Thank you for this really good advice! Like the majority of people who are afflicted I am one of those pesky overachievers perfectionist so I would do me good to incorporate this idea into my life.

 

[rebar]

For me,
Striving for inner peace, the goal being to reduce my obsessing about this illness. It has been quit difficult as my symptoms and mood at times correspond.
I do it by mediative prayer, it won't fix the ME/CFS, but it does help my life to be more bearable. Being observant of your mental state and gently moving it away from negative thought trains, helps too.

Also great things are happening in the research community!
We all will know so much more in the next few years.

 

[Remy]

A better question might be:
> Is it possible to get better even if you were extremely rich?

I would say yes, but probably only because, as @Luke S pointed out, stress is a real killer in every way. More money typically means less stress but it is possible to do things that reduce stress and to focus your energies there very cheaply. I totally agree with meditation and breathing work and mantra meditation.

I've tried All The Things, mostly and I don't regret doing it. I'll continue to try more things, I'm sure, but mostly because they bring me Hope. And I think that Hope, where or however you find it is probably the most important thing. It doesn't have to be expensive.

 

[sharon]

Sorry to hear about this, Abrin....in my opinion, pacing and good sleep are essential components for improvement. I do not know if you have seen an ME specialist....I know they are hard to find in Canada[ I am also from Canada]...but it would be good if you could. I do not think there are any magic supplements out there[ I take many myself..lol] If your budget stretches to it...I think a good multivit, would be good to take, and not too expensive. A good site for pacing is cfidsselfhelp.org......lots of good info there....has been around for a long time....I wish you all the best, as I do anyone with ME....it is a difficult illness, but I do think you can make improvement. And I also think hope is so very important.

 

[Abrin]

I do not know if you have seen an ME specialist....I know they are hard to find in Canada[ I am also from Canada]...but it would be good if you could.

Sadly, I haven't been able to see an ME specialist. The only specialists that are near me are in Toronto and I can't afford to cost of travel to get back and forth and I find that long travel causes me to crash.

Thank you for you sweet thoughts and well-wishes they are truly appreciated.

 

[sharon]

Sadly, I haven't been able to see an ME specialist. The only specialists that are near me are in Toronto and I can't afford to cost of travel to get back and forth and I find that long travel causes me to crash.

Thank you for you sweet thoughts and well-wishes they are truly appreciated.

 

[sharon]

you are more than welcome!

 

[rebar]

Concerning specialist, they can be important, but usually can't give much real help, as yet. I have one of the top ME doctors in the states and have tried most every pharmaceutical suggested for treatment, yet nothing has been much help, several have caused additional problems.

I will continue with my doctor we have developed a solid friendship and I know she struggles with one of the most profoundly baffling of illnesses.
Most of my appointments now are taken up with conversation about the state of treatment and research. She will make suggestions based on her experience and the latest research but not the level of throwing everything at this dysfunctional system of mine as she did initially.

My experience is not unique.

I wait for the real treatment to be available, not to say antiviral's don't work for some but, that is a very small percentage of our population.

All good suggestions here, do what you can with the symptoms, sleep, digestive problems, pain and mood and patiently wait for the breakthrough in treatment.

 

[madie]

I haven't gotten any help from doctors, because I don't have the kind of symptoms they can treat, like POTS or thyroid problems or adrenal issues.

The only supplements I take are vitamin D and B12, because I have tested low for them in the past, and they can affect energy. Also they're cheap and widely available.

Everybody says you have to get good sleep, but I've had insomnia for at least 20 years, so......we do our best. I figured out early on that on thing I can do when I'm physically exhausted but not sleepy is meditate, and - bonus! - it's great for stress reduction. I agree that relaxation really, really helps.

I won't go off on a long food tangent, because I can talk about that stuff for days. But briefly, if you can handle carbs, potatoes eaten without fat are a pretty fabulous and cheap food. I also used to make a blend of equal amounts of frozen peas, corn, and lima beans that I kept in the fridge to eat all day with soy sauce. Tons of protein and fiber, and cheap.

Edit: Oops! I forgot the 'getting better' part! I am worse when I don't meditate, don't stay away from destructive people, don't pace myself, and eat poorly. I am better when I'm attentive to my food sensitivities and follow a diet that works for me. Also I spend most of my time alone.

 

[Abrin]

do what you can with the symptoms, sleep, digestive problems, pain and mood and patiently wait for the breakthrough in treatment.

Thank you....this is really good advice.

 

[Abrin]

I also used to make a blend of equal amounts of frozen peas, corn, and lima beans that I kept in the fridge to eat all day with soy sauce. Tons of protein and fiber, and cheap.

I really need to get better at doing something like this and finding something that has lots of protein and is pre-made. I end up eating junk all the time because I am always too tired to cook.

 

[Zapped]

You could feel better about it all by reading Buddhist philosophy, not as 'religion' but about thre mastery of life, from what it is each minute to a tome 'Buddhism,' by a neurologist, MD, who explored it on foot through the Buddhist countries and applied it to the the known (and unknown) sciences of the brain/mind. My note: in the end, nothing works...everything works; you simply learn to adapt... . Your 'broke-ness' will go away.

 

[Abrin]

You could feel better about it all by reading Buddhist philosophy

I've actually stayed at a Buddhist monastery in the past and while I enjoyed living and learning Buddhist philosophy from a Buddhist monk and have taken some things from its teachings....for me personally, in the 'long-view' it wasn't much help.

 

[Creekside]

Yes, it is possible to find something inexpensive that makes a big improvement in your quality of life. The problem is: what works depends on the individual and no one knows which one will work for which individual. I think of it as a lottery: there's a chance of winning big while spending only $1, but it's a tiny chance, so you might need to buy a lot of tickets. However, that first $1 ticket could be a winner! Also, if you don't buy any tickets, you are guaranteed to not win.

For me, two of my most effective treatments--cumin (cuminum cyminum) and iodine (actually the portion that turned into 3-5 diiodothyronine)--were not only cheap, but were already in my kitchen. I've found a few other treatments that were effective only temporarily, and tried a lot of other things that did nothing. However, I keep trying new things and hoping for another winner.

Buying only the same foods each time is passing up the opportunity to find one of these 'winning' tickets. It also prevents you from identifying some of these foods that might be making your symptoms worse. To make matters more complicated, our responses to these various inputs to our bodies changes over time. Effective treatments might stop working after a while, and something that you tried with no effects might become an effective treatment at a later date.

As an example of something that became a problem, last year I noticed I had become highly sensitive to something in meats. Further experimentation showed that I was also sensitive to non-meats. It took quite a bit of experimentation with different foods to identify the culprit as proline (non-essential amino acid). I couldn't find any foods that had a low proline / other amino acid ratio. Luckily, the sensitivity seems to have passed (at least to some degree).

As another example, at one point I was sensitive to what I'm pretty sure was palmitic acid (a common fatty acid). I managed to solve that by taking supplemental carnitine. More recently, I found that something (conjugated linoleic acid) in beef and lamb countered my proline sensitivity ... although that only worked for a week or so, then stopped working. Cis-linoleic acid still works to counter frequent wakings during the night.

The point is, our ME can be strongly affected by something as basic as a simple amino acid of fatty acid or mineral. It is possible to find something to add to your diet or avoid in order to improve your quality of life. It does take time, effort, and luck, but it can certainly be worth it.