* I've changed the blog address from www.sarahsworld.me back to the original (badly chosen, but I'm stuck with it) address of www.kiwikchat.blogspot.com .

This means that some links to older posts and old links from other sites don't work. :(

Sunday, April 24, 2011

Things I wish someone had told me about M.E.

Everything is clear with 20/20 hindsight. What would you tell yourself if you could go back to when you first got sick?  What would you have done differently?

For me personally there are a few things I would have liked to know when I first got me/cfs.

This isn't medical advice, I am not a doctor and my body is no doubt very different to yours, but I'd like to share some of the things that would have helped me on the off chance that they might help you or someone you know.

I update this periodically as I learn more about myself and M.E. The last update was March 7 of 2012. 

Immediate practical advice on pacing and diet:

I know an accurate diagnosis at the very beginning isn't possible because me/cfs is a diagnosis of elimination and there is no blood test yet.  However if me/cfs had been considered a serious life changing risk straight away or at least one month in, it might have been different.

I think if you have all the symptoms of M.E. as per the International Consensus Criteria 2011, the doctor, should prescribe pacing and dietary changes immediately (at least cutting out alcohol and preservatives). What harm could it do?  I know there are a lot of other medical problems that have similar symptoms but while looking for them couldn't we have gotten a head start just in case.

Please take the risk of M.E. seriously

It's a nasty nuero-immune disease and you need to give your body a fighting chance and make major life changes fast.  It's up there with a diagnosis of M.S.  

Don't have any unnecessary operations:
I was advised by an ENT doctor who was very helpful about me/cfs that a corrective surgery on my nose to fix a deviated septum might help. 

Frustratingly it was the absolute wrong decision. Looking online and talking to various doctors there wasn't really much info about me/cfs and post operative recovery. I thought I would take a bit longer to get better but had no idea how much longer.  Before the operation I was able to work in a reduced capacity and was slowly getting better, after the operation I had to leave my job as I was progressively getting worse.  I took a long time to heal and I am still a lot sicker than I was before the op.  It was for me the difference between moderate and severe me/cfs.

If it's not medically necessary, think long and hard about any operation if you have me/cfs or suspect that you might have me/cfs.

Autonomic Nervous System Dysfunction and Saline IV's: 
The ANS is the part of your nervous system that controls a lot of the unconscious things, like digestion, heart rate, circulation etc..  It's pretty dysfunctional with M.E. and understanding this is important.

One thing it seems to fail at, is controlling the blood volume, leaving us with super fast heart rates (see POTS below) and low cerebral blood flow.  All made worse when we sit or stand.

The one treatment that has really helped me in this area is Saline IV's.  The saline IV's have been a MAJOR help to me, actually without them I don't know where I would be as they pulled me out of a nasty health decline.

You can find more info about how they helped and hints on how to get them here.

Stomach advice:
I think a lot of my sore throats and burning chest pains (reflux) were related to my stomach problems.

I've tried many different meds and diets with varying degrees of success.
The elimination diet from the Royal Prince Alfred Hospital in Melbourne has pretty much cured me of these symptoms.  I discovered I am intolerant of salicylates which are a natural food chemical in most foods.

For a long time I took nexium as well, one in the morning, one at night but after going on the PA diet I was able to wean myself off it completely.

I also use Mylanta (dual action) occasionally.  My doc recently pointed out that Mylanta and the like have aluminium in them, which is linked to Alzheimer's so not to take too many too often.

What didn't work - motilium, an anti nausea drug.

I still get nausea, and find the only thing that really helps the nausea is pacing and rest.

Everyone seems to have different vitamin supplements regimes.  Blood tests are good place to start. I find some supplements hurt my stomach so try to keep tablets to a minimum and use injections instead. Vit D is important if you don't get out into the sun.  

Vit B12 is absorbed in the stomach and because I have gastritis I don't absorb it. Vit B12 is a great pick me up, and excess B12 is peed out.  The injections with cyanocobalamin in the name do contain cyanide so you don't want to have too many. How much is too much? I don't know. It's easily avoidable though, just ask for Neo - B12 otherwise known as Hydroxocobalamin, it doesn't have any cyanide in it. 

Iron injections:
For a long time I've need Iron injections and really had a great pick me up feeling from them.  I had low stored iron levels, around 20, wheras I need to be in the 100's to feel 'good'.  This has helped but obviously not that much.  Still it's worth getting checked out and being aggressive about getting and keeping you  levels up.  With M.E. you don't need anything else draining your resources.

Apparently iron is used up quickly when we are fighting an infection.

Iron is something you don't want to have too much of in your system so regular tests are needed to check levels.

I am also taking what I think of as my hopeful supplements, things that might be helping with the bigger picture and don't seem to be hurting.

- Probiotics
- Fish oil
- Slippery Elm
- Digestive enzymes
- L-carnitine
- Usana brand multivitamins
- Vit C (the type without ascorbic acid)
- Berrocas
- Vit D
- Calcium
- Magnesium (this helps achy muscles)


Is tricky with me/cfs, firstly getting asleep and staying asleep.  I used to take a tricyclic anti-depressant called Deptran 10mg, but even at that low dose it turned me into a zombie over time and made the brain fog worse.  Now I am on a newish drug called Valdoxan which works on your circadian rhythms.  This seems to be working and combined with a strict sleep routine I am getting 8 hrs most nights.

Sleep routine:

- No visual stimulus after 8pm and (although I usually stretch that a little to 9pm)
- audio books or music from then on
- meditation and relaxation cd's are great and are often my saviour when I am finding it difficult to sleep. (it took a lot of repetition before my body got the 'go to sleep' message from the cd's)
- eyemask, ear plugs, locked doors and a fire alarm all help me feel safe and secure and sleepy.

note: it takes persistence to get a sleep routine to work.

I believe that it doesn't matter when you sleep, just that you do.  This has to be a priority with your treatment.  Don't let anything or anyone mess with your sleep.  Any meds that consistently stop you from sleeping are not okay.  I am usually 2-3 hours out of sync with everyone else, whenever I try to bring it forward my sleep becomes difficult again.

I still get the occasional night where I stay awake the whole time.  I try not to stress about it and just do lots of boring guided meditations which is the closest thing you can get to sleep and if you're lucky might just put you to sleep.  Jack Kornfields meditations are great, I was able to hire them out from the library.

Yes like lots of people with me/cfs I have an under active thyroid, I take a thyroxine tablet on an empty stomach as soon as I wake up to counter this and whenever I get a blood test I ask them to check this also.

Underlying infections - for me UTI's

I think a piece in the me/cfs puzzle is dealing with other chronic infections and avoiding antibiotics. I have had persistent low level UTI (urinary tract infection) infections over the last 7 years and been on lots of antibiotics which no longer work for me.

Now I keep them at bay by:
- Taking cranberry pills
- Change of diet, I have a low/no sugar diet and lots of fluids.
- Applying a cream called ovestin topically twice a week.  The ovestin is basically a hormone cream which a doc said sometimes helps women with chronic UTI's.

I had a couple of bad infections at the beginning of my me/cfs battle but the above treatment combination has worked for me.

Finding Activity Boundaries:

It's so hard to know where your exercise/activity boundaries are when struggling with me/cfs.

Some things that helped me include:

- pedometer to monitor steps
- heartrate monitor
- my new fabulous super duper spreadsheet where I record just about everything, meds taken, sleep, activities, symptoms, periods, doctor visits, treatments on an hour to hour basis, with a summary page so I can see how I'm progressing throughout the month.

I was keeping a health journal but found that it was hard to spot a pattern in it. I tried a drug called reboxetine which apparently helps some people.  For me, it was terrible, but it was a slow change and using my health journal I didn't spot it.  My new spreadsheet is my attempt to be able to spot any changes like that sooner and trace them back the cause before it becomes really bad.

I know it sounds obsessive, but this is M.E. it has to be taken seriously.

Mental Health:

The second GP, I saw when I got sick, looked at my blood tests, listened to my symptoms and asked me if I was depressed.  I burst into tears, which didn't do much to convince her otherwise.  Suffice to say depression is not causing my me/cfs symptoms but it is something that is constantly lurking, ready to overwhelm me on a bad relapse day.

I find the following things help:

- Blogging about it, helps to clarify things in my own mind and feed back is great as is reading other peoples blogs.

- Tweeting/facebook is a great way to reach out and get an immediate response from people in a similar situation. thanks to all my internet friends.  

-  valdoxan, which I primarily take for sleep is also an anti-depressents.  It took a while to find what works for me.  Perseverance is good.

- urgh it's hard to make yourself do this, but meditating is really good, clears the mind and soul.

- trying to focus on the 'now' and not worry about the future.  Thinking about what I have, not what I don't.

- seeing a psychologist who understands me/cfs is very helpful. It's so important to have someone you can talk to without holding anything back.  Someone you don't have to try and protect from the effects of your illness.

- friends in small doses so they don't exhaust me.  I love my friends and can't wait to feel well enough to see more of them, but in the meantime I limit the visits to 30mins at a time.

NB: In Australia if you have a chronic illness you are eligible to 12 psychologist appointments a year to help you cope, ask your GP for a referral under the mental health plan if you feel you might need it. (under the Gillard government this has changed to 10).

Heart rate: Orthostatic Intolerance and POTS

Big thank you to a blog by Sue Jackson about O.I,   After reading Sue's blog I started thinking about orthostatic intolerance, which is caused by a fast heart rate.  I did have the symptoms, getting dizzy and blacking out every time I stood up and difficulty standing for any length of time followed by feeling instantly better when laying down.

So I bought a heart rate monitor $60 online. On the first day I hit 150 beats/minute while washing my hands at the sink.  That was a bit of a shock.  I said to Mum tongue in cheek, 'wow there must be something wrong with me' .  Finally something we could measure!

I've had lots of checks, including an echocardiogram and a holter monitor.  I do fit the definition for POTS, Postural orthostatic tachycardia syndrome which is common with M.E.  It's important to see a cardiologist if you have POTS, check first though that they know what it is and are experienced with treating it.

A lot don't.  Also if when you mention this to your doctor don't be surprised if they start asking you about anxiety.  POTS symptoms mimic anxiety but won't be fixed by anti-anxiety pills.  Although if you have anxiety and POTS they might help a bit.

So far in treating the POTS side of things I've used:

- saline IV's help boost blood volume (these are crucial).
- added lots of salt to my diet and lots of water to increase my low blood pressure.
- I was doing pilates to strengthen my leg and abdominal muscles which helps POTS, but I got too ill to cope with that, hopefully as I am now a getting better after starting saline IV's I will be able to start these again soon..
- am trying a drug called Ivabradine which works on the sinus node (the timer) in your heart to slow it down.  So far no bad side effects and the tachycardia is reduced.

If I had known all the above a year earlier, I might not be writing this from my bed with my laptop perched precariously on my stomach....!

I wish M.E was better known and that the common M.E. complications were better documented and known in the medical profession.

In the meantime at least we have the internet and social media to spread the word.

I would love to hear what has helped you with dealing with a chronic illness!

What treatments have turned a corner in your health battle?

What did you try that didn't work or made it worse?


  1. This is a very helpful post kiwikchat. My nutritionist said to me that the gut is key and I believe him, tho he's not an M.E. specialist.

    I think the supplements I take have helped me not to become bedbound, but without specialist care (which is practically non- existent) it's very much suck it and see. Also when I was diagnosed with chronic Lyme, I was put on antibiotics, but after 8 months felt that the damage they were doing was greater than the help, so moved onto the salt/ vit C protocol.

    I think what we are all waiting for is a proper diagnosis and treatment plan. Until then we continue to manage the symptoms the best we can.

  2. Thanks for your comment Carolyn,
    I agree, I think trying to get a grip on the gut/stomach issues is important and seems to be an inherent part of it. I was on antibiotics for the UTI's and think they were really bad for my overall health and an glad (fingers crossed) that I don't need them at the moment.

    It is a bit like stumbling around in the dark in a room full of furniture. Eventually we will have more info, thanks for sharing your experiences.

    :) Kiwikchat

  3. I think cutting out the alcohol and preservitives helps so many diseases. I just can't tolerate either one of them.

    I have systemic candida... well, I did.. hopefully I have healed it, but it has caused a lot of devastation to my body. I am sure your disease has done the same thing.

    I am following your blog because a lot of the things you are doing are the same as I am doing.

    Good luck in your journey...

  4. Hi Terry,

    Thanks for commenting and sharing. I did do and am still on (sort of) the candida diet and it seems to help. Dietary changes made a big difference to me and I am still learning what works and what doesn't so my diet is changing still.

    Good luck to you too :)and thanks for following.

  5. I'm so sorry to hear about your illness. I've had CFS for nearly 15 years. I just thought I'd share some things that have helped: for UTIs try D-Mannose rather than cranberry. Have a look at this website for information: http://www.waterfall-d-mannose.com/. But more importantly perhaps see if you can find a doctor who is trained by or familiar with Dr. Klinghardt, who does a lot of work with chronic illness. http://www.klinghardtacademy.com. The only doctor who really helped was one in Germany, Klinghardt trained, who finally diagnosed me has having Rickettsia - similar to Lyme disease. I had gotten tick bite fever in South Africa about a year before getting ill with CFS type symptoms, and no other doctor made the connection. She's an 'orthodox' doctor but used muscle testing. I was put on year long protocol of high dose herbs, also specifically tested for me. While I'm not 100% better, it definitely made a huge difference.
    All strength.

  6. HI Sandra,

    THanks for your comment, it's always great to get more ideas and things to look into at the docs. I'm glad that you are feeling a lot better.