What has helped you the most?

Messages
18
Likes
11
Location
London, England
Hello!

I stumbled upon this website yesterday and it's made me feel so happy to see so many people supporting and helping each other. I'm so excited to be a part of it!

I don' t know if this questions has ever been asked before (I haven't looked at all the topics yet) but I was wondering : what has helped you the most?

I know it is kind of a broad question, but I am so interested.

You can tell me about treatments you've tried, doctors you've spoken to or just little things that you have found have a possessive difference to you. It doesn't matter what stage of recovery you are in, I want to know what you think has helped you out, in a big way or a small one.

This is a space to talk about recovery and exchange recommendations and ideas, and hopefully it will provide us all with a few new things that will help make positive changes to our life styles!

I am really looking forward to hearing what you have to say.

Hannah xo
 

Raindrop

Senior Member
Messages
129
Likes
130
Location
USA
Thank you for this!
My sleep is helped by trying to wind down 2 to 3 hrs before I am trying to sleep. No (or very very low)
noise (so hard)....very low light, Not talking to anyone on the phone and *not being on the computer or
watching TV* (which activates the brain) -- all of which I find extremely difficult to regularly do!!!!!
When your cognitive faculties are the best late at night, it makes you want to use them, but
it sabotages the "wind down".

Amazingly, long Yoga classes used to help reduce my glare/light sensitivity when I did them, and so did massage.
Sadly, I have been unable to do these things for years due to lack of money.
 
Messages
18
Likes
11
Location
London, England
Thank you for this!
My sleep is helped by trying to wind down 2 to 3 hrs before I am trying to sleep. No (or very very low)
noise (so hard)....very low light, Not talking to anyone on the phone and *not being on the computer or
watching TV* (which activates the brain) -- all of which I find extremely difficult to regularly do!!!!!
When your cognitive faculties are the best late at night, it makes you want to use them, but
it sabotages the "wind down".

Amazingly, long Yoga classes used to help reduce my glare/light sensitivity when I did them, and so did massage.
Sadly, I have been unable to do these things for years due to lack of money.

Hey! Thanks for replying, I was scared no one would :')

I agree, is so important to have a good routine at night. It is hard to get into one though! I've found drinking herbal teas that are specifically targeted at making you feel calm a very helpful. My favourite one is by a company called 'Pukka' and it's called 'Night Time Tea' - I usually drink it while reading a book or sometimes I go and sit in my back garden (if the weather is nice enough, obviously.) Somehow it stops my mind being all jittery, I can't explain it.

What type of massage did you use? I've never tried it but people have been saying it works wonders. Also , with regards to yoga, have you heard of the book called 'Beat Fatigue With Yoga' by Fiona Agomar? She is a recoverer herself and all the poses are very gentle. It is also a DVD too, but for a nightly routine the book is probably better :)

Thanks so much to replying!

Hannah xo
 

peggy-sue

Senior Member
Messages
2,623
Likes
3,243
Location
Scotland
I've got Fiona Agombar's book. It's far too much for folk with ME. I personally suspect a case of CFS.
There are lots of poses that involve arm raising - out of the question unless I can achieve something by it, such as getting the laundry hung up.

Simple, easy things to incorporate into your lifestyle, which will save you a ton of energy:-

Never stand when you can sit down; never sit if you can lie down.

If you have to stand, shuffle about a bit.
That way, you are shifting between muscle groups which are doing the work of keeping you upright, and keeping you balanced...

rather than keeping a strain on the same muscle groups, all pulling in opposite directions to each other to keep you upright and balanced.
That, although you are not aware of it, is a lot of work.

If you have to sit, sit with your legs raised.

When you are walking around, the muscles in your legs physically squeeze the blood which has gone down to your feet back up again, because they are expanding and contracting around your blood vessels. There are valves which keep it up.

When you are sitting, your poor heart has to do all this work on its own.

When the blood reaches your feet, it is at its furthest point from the heart, your heart has to push really hard to get the blood form your feet, back up against gravity...

If your feet are raised, your heart doesn't have to work against gravity to get your blood around.
 
Messages
18
Likes
11
Location
London, England
I've got Fiona Agombar's book. It's far too much for folk with ME. I personally suspect a case of CFS.
There are lots of poses that involve arm raising - out of the question unless I can achieve something by it, such as getting the laundry hung up.

Simple, easy things to incorporate into your lifestyle, which will save you a ton of energy:-

Never stand when you can sit down; never sit if you can lie down.

If you have to stand, shuffle about a bit.
That way, you are shifting between muscle groups which are doing the work of keeping you upright, and keeping you balanced...

rather than keeping a strain on the same muscle groups, all pulling in opposite directions to each other to keep you upright and balanced.
That, although you are not aware of it, is a lot of work.

If you have to sit, sit with your legs raised.

When you are walking around, the muscles in your legs physically squeeze the blood which has gone down to your feet back up again, because they are expanding and contracting around your blood vessels. There are valves which keep it up.

When you are sitting, your poor heart has to do all this work on its own.

When the blood reaches your feet, it is at its furthest point from the heart, your heart has to push really hard to get the blood form your feet, back up against gravity...

If your feet are raised, your heart doesn't have to work against gravity to get your blood around.

Hi Peggy-Sue! Thanks for the tips.

I'm sorry the book didn't work for you. ): Did you try ignoring the parts which involved raising your arms or did that not have the same effect? Also, have you found any other yoga styles that suit you instead?

Forgive my ignorance, but I was under the impression that ME and CFS were the same thing? It's just that when I got diagnosed with one (I forget which one now actually) I asked my doctor if I had the other and she said 'well they both mean the same thing' so that is what I've always thought. Can you explain the difference to me please?

Hannah xo
 

peggy-sue

Senior Member
Messages
2,623
Likes
3,243
Location
Scotland
It's quite simple, basically.
If you've got PEM, (Post-Exertional Malaise) you can't do any exercise without getting really ill afterwards - much afterwards - with an exacerbation of all symptoms. That's ME.

Your body simply refuses to go aerobic - you get lactic acid build up in your legs if you try to walk upstairs or up a slope, (or raise your arms) while walking on the flat isn't nearly so much of a problem as long as it is slow and easy.

This obviously is only for mild or moderate ME - not the severe sort, where you're bedridden in a dark room with earplugs.

If you don't get PEM, it's likely to be something else causing the CFS, which is a group of symptoms cobbled together by psychiatrists, who believe the problem is caused by too much rest during an illness and then us being to lazy to get fit again. It's not a real diagnosis of a true, known illness. It's a wastebucket of heterogenous groups of sick folk.

I did Vimi Yoga practise for 5 hours a week, had been for 3 years, when I got sick. I was super-fit then!

I can do the "corpse" pose ok, these days.

There is something funny going on with my pc. I haven't got any emoticons
and I can't bold or italic or underline anything to make my posts a little bit more
legible and clear.
 
Last edited:

SOC

Senior Member
Messages
7,849
Likes
16,387
1) Valcyte -- got me from bedbound to housebound, so huge improvement. Daughter went from nearly housebound to remission. Also got rid of flu-like symptoms, a large part of the cognitive dysfunction, an the rest of the muscle pain (see below for the rest of the muscle pain issue)

2) Florinef (for hypovolemia) and verapamil (for tachycardia) -- made me much more able to be upright, do things around the house, and be out and about in public more.

3) Pacing based on staying well below my AT (as determined by a one-day CPET) -- Stopped my downhill slide, and ended a lot of the muscle pain, and the constant tiredness that was the result of overdoing.

There are other medications and supplements that helped to a lesser degree, but those are the big ones. :)

These treatments would not be appropriate if you have only chronic fatigue (the symptom). In the UK, simple fatigue is often incorrectly diagnosed as CFS or ME. If you have only fatigue without the PEM and other neurological and immune symptoms, then you should insist your doctor look for a better diagnosis because your fatigue might be treatable.

You can read the International Consensus Criteria for Myalgic Encephalomyelitis to get a feel for whether you actually have ME. Don't expect any UK doctor to acknowledge these criteria, though. For some reason the NHS is determined to keep its head stuck in the dark ages (and maybe somewhere else as well) with regard to ME.

Here's the basics. You'll have to read the full paper to get all the details and references. (PEM is called PENE in the ICC)
Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus.
 A patient will meet the criteria for postexertional neuroimmune exhaustion (A), at least one symptom from three neurological impairment categories (B), at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C), and at least one symptom from energy metabolism/transport impairments (D).
A. Postexertional neuroimmune exhaustion (PENE pen’-e): Compulsory
This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows:
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms.
3.Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.
Operational notes:
For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s premorbid activity level.Mild(an approximate 50% reduction in pre-illness activity level),moderate(mostly housebound),severe(mostly bedridden) orvery severe(totally bedridden and need help with basic functions). There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects.Recovery time: e.g. Regardless of a patient’s recovery time from reading for ½ hour, it will take much longer to recover from grocery shopping for ½ hour and even longer if repeated the next day – if able. Those who rest before an activity or have adjusted their activity level to their limited energy may have shorter recovery periods than those who do not pace their activities adequately.Impact: e.g. An outstanding athlete could have a 50% reduction in his/her pre-illness activity level and is still more active than a sedentary person.
B. Neurological impairments
At least one symptom from three of the following four symptom categories

1. Neurocognitive impairments
a. Difficulty processing information: slowed thought, impaired concentration e.g. confusion, disorientation, cognitive overload, difficulty with making decisions, slowed speech, acquired or exertional dyslexia
b. Short-term memory loss:e.g. difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory
2. Pain
a. Headaches:e.g. chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine; tension headaches
b. Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is noninflammatory in nature and often migrates. e.g. generalized hyperalgesia, widespread pain (may meet fibromyalgia criteria), myofascial or radiating pain
3. Sleep disturbance
a. Disturbed sleep patterns:e.g. insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, awaking much earlier than before illness onset, vivid dreams/nightmares
b. Unrefreshed sleep:e.g. awaken feeling exhausted regardless of duration of sleep, day-time sleepiness
4. Neurosensory, perceptual and motor disturbances
a. Neurosensory and perceptual:e.g. inability to focus vision, sensitivity to light, noise, vibration, odour, taste and touch; impaired depth perception
b. Motor:e.g. muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia
Notes: Neurocognitive impairments, reported or observed, become more pronounced with fatigue.Overload phenomenamay be evident when two tasks are performed simultaneously. Abnormal accommodation responsesof the pupils are common.Sleep disturbancesare typically expressed by prolonged sleep, sometimes extreme, in the acute phase and often evolve into marked sleep reversal in the chronic stage.Motor disturbancesmay not be evident in mild or moderate cases but abnormal tandem gait and positive Romberg test may be observed in severe cases.
C. Immune, gastro-intestinal and genitourinary Impairments
At least one symptom from three of the following five symptom categories

1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion.e.g. sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender on palpitation
2. Susceptibility to viral infections with prolonged recovery periods
3. Gastro-intestinal tract:e.g. nausea, abdominal pain, bloating, irritable bowel syndrome
4. Genitourinary: e.g. urinary urgency or frequency, nocturia
5. Sensitivities to food, medications, odours or chemicals
Notes:
Sore throat, tender lymph nodes, and flu-like symptoms obviously are not specific to ME but their activation in reaction to exertion is abnormal. The throat may feel sore, dry and scratchy. Faucial injection and crimson crescents may be seen in the tonsillar fossae, which are an indication of immune activation.
D. Energy production/transportation impairments: At least one symptom
1. Cardiovascular:e.g. inability to tolerate an upright position - orthostatic intolerance, neurally mediated hypotension, postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness
2. Respiratory:e.g. air hunger, laboured breathing, fatigue of chest wall muscles
3. Loss of thermostatic stability:e.g. subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities
4. Intolerance of extremes of temperature
Notes:
Orthostatic intolerance may be delayed by several minutes. Patients who have orthostatic intolerance may exhibit mottling of extremities, extreme pallor or Raynaud’s Phenomenon. In the chronic phase, moons of finger nails may recede.
 

peggy-sue

Senior Member
Messages
2,623
Likes
3,243
Location
Scotland
Hanhanhannah11 is in England, @SOC. No valcyte, no florinef, no verapamil, no proper tests.:(

I got a lot of help from Dr. Myhill's site, and from Hummingbird's.

There is information in those about the sorts of supplements that are available to us in the uk.

The ones I find most useful are high dose EPA and sublingual Vitamin B12.
 

SOC

Senior Member
Messages
7,849
Likes
16,387
Hanhanhannah11 is in England, @SOC. No valcyte, no florinef, no verapamil, no proper tests.:(
She didn't ask what was available in the UK, she asked what works.

It's beyond sad that the most helpful tests and treatments are not allowed in the UK. That's one reason I continue to encourage UK patients to go outside the country to see KDM.

There are few patients who live within 2 hrs of a top specialist. US patients generally travel MUCH farther than that to see specialists, and our tests and specialists cost a lot more than you'll pay KDM. If you want decent treatment for ME/CFS, you have to do what it takes to get it.
 

peggy-sue

Senior Member
Messages
2,623
Likes
3,243
Location
Scotland
Well, yes, you're correct of course.

Paying for it can be a huge problem.

We don't have compulsory health insurance here - and it's an expensive extra to take out. We already pay for our health care via taxes and National Insurance. (Or so we are told. The money gets used for other things, but that's government for you.)
 

SOC

Senior Member
Messages
7,849
Likes
16,387
Well, yes, you're correct of course.

Paying for it can be a huge problem.

We don't have compulsory health insurance here - and it's an expensive extra to take out. We already pay for our health care via taxes and National Insurance. (Or so we are told. The money gets used for other things, but that's government for you.)
So true, but even health insurance, which we pay a lot for, doesn't cover 100% of all medical costs. There is still a large out-of-pocket expense even with good insurance in the US. Some US patients have found it can be cheaper to fly to Brussels to see KDM than to see a US specialist, even with insurance.

I can't speak for other US families, but out-of-pocket medical expenses (including travel to see our specialist 2000 km away) for 2 ME patients is one of my family's major expenses -- more than food, for example. We will probably have to sell our house and downsize to continue to afford it. We have good insurance, or we wouldn't be able to afford ME treatment at all.

It's worth it, though. If we didn't choose to make the effort and pay the cost for good medical care, I'd still be bedbound and unable to read or think clearly. My daughter would have had to drop out of college and be housebound or worse. Instead, I'm largely housebound, but able to earn some money tutoring, and do some light housework. Daughter graduated from college, is now in graduate school, and has enough of a social life to meet a charming young man and get engaged.

I wish it didn't cost so incredibly much to get decent medical care. I wish we could get that care from a doctor within 100 km instead of having to travel 2000 km. But it is what it is. I'd do it again in a flash if all we got was a real life for our daughter. Our other choice was to let her drop out of college and have no future. Not an acceptable solution.

It's not fair we have to give up so much (in effort and money) to keep our daughter functioning, but we do what we have to. Nothing seems to be fair about having ME. Nothing.
 
Messages
10
Likes
19
Location
Long Beach
What has helped me the most is to learn to accept what I cannot change. I focus on what I can do and not what I can't. Doctors have not been particularly helpful as I do not have any indication of having anything in my blood work. I have idiopathic chronic fatigue and aerobic exercise intolerance. Instead of becoming depressed about not being able to do martial arts and dance, I am appreciative that I can walk, paint, read, write, etc.
 

SOC

Senior Member
Messages
7,849
Likes
16,387
What has helped me the most is to learn to accept what I cannot change. I focus on what I can do and not what I can't. Doctors have not been particularly helpful as I do not have any indication of having anything in my blood work. I have idiopathic chronic fatigue and aerobic exercise intolerance. Instead of becoming depressed about not being able to do martial arts and dance, I am appreciative that I can walk, paint, read, write, etc.
Have you tried seeing a top ME/CFS specialist instead of local docs who know nothing about the illness? Getting appropriate medical treatment seems more beneficial than simply accepting disability. Or is that not useful for idiopathic chronic fatigue and aerobic exercise intolerance?
 

Allyson

Senior Member
Messages
1,684
Likes
691
Location
Australia, Melbourne
Hello!



You can tell me about treatments you've tried, doctors you've spoken to or just little things that you have found have a possessive difference to you. It doesn't matter what stage of recovery you are in, I want to know what you think has helped you out, in a big way or a small one.



Hannah xo
D ribose for muscle aches,

IM B 12 innections for sleep


POTS testing - POT is one symptom that responds well o treatment for many

good luck!

Ally
 
Messages
93
Likes
59
1) Valcyte -- got me from bedbound to housebound, so huge improvement. Daughter went from nearly housebound to remission. Also got rid of flu-like symptoms, a large part of the cognitive dysfunction, an the rest of the muscle pain (see below for the rest of the muscle pain issue)

2) Florinef (for hypovolemia) and verapamil (for tachycardia) -- made me much more able to be upright, do things around the house, and be out and about in public more.

3) Pacing based on staying well below my AT (as determined by a one-day CPET) -- Stopped my downhill slide, and ended a lot of the muscle pain, and the constant tiredness that was the result of overdoing.

There are other medications and supplements that helped to a lesser degree, but those are the big ones. :)

These treatments would not be appropriate if you have only chronic fatigue (the symptom). In the UK, simple fatigue is often incorrectly diagnosed as CFS or ME. If you have only fatigue without the PEM and other neurological and immune symptoms, then you should insist your doctor look for a better diagnosis because your fatigue might be treatable.

You can read the International Consensus Criteria for Myalgic Encephalomyelitis to get a feel for whether you actually have ME. Don't expect any UK doctor to acknowledge these criteria, though. For some reason the NHS is determined to keep its head stuck in the dark ages (and maybe somewhere else as well) with regard to ME.

Here's the basics. You'll have to read the full paper to get all the details and references. (PEM is called PENE in the ICC)
@SOC
How long on Valcyte if you are up to sharing details?
 
Messages
93
Likes
59
My biggest help so far is pain meds plus my heating pad, very low tech but helps for the pain in my legs. I have tried many supps and some valgancylovir for only three months and feel like I am not dosing high or low enough or long enough maybe. I do not have a good ME/CFS doctor, specialists exist but do not take insurance and charge high fees.
This forum is a big help!
 

SOC

Senior Member
Messages
7,849
Likes
16,387
My biggest help so far is pain meds plus my heating pad, very low tech but helps for the pain in my legs. I have tried many supps and some valgancylovir for only three months and feel like I am not dosing high or low enough or long enough maybe. I do not have a good ME/CFS doctor, specialists exist but do not take insurance and charge high fees.
This forum is a big help!
If your doc is not familiar with Vacyte, s/ he may not be aware that it crucial to get blood tests to check for neutropenia and liver problems every 4-6 weeks. Both are reversible if caught quickly and potentially fatal if not. Please make sure you are getting proper testing.

In my first round with Valcyte I felt nothing for 4 or 5 months, then pretty awful for about 2 months, and then noticeably better after that. Daughter, otoh, had a slow continuous improvement after the first month and had no bad stretch.

In this second round, I felt much better after the first month, while daughter is improving but more slowly.

Response to Valcyte seems to depend on a lot of as yet unidentified factors.
 
Last edited: