Anyone else have M.E/CFS or Fibro?

[snailytrail]

Hi everyone

I just started my first Whole 30 (on Day 3) and I was just wondering if anyone else is doing this or has done this with M.E or Fibromyalgia.

 

I'm feeling a bit anxious as to whether I'm pushing my body into a big crash. Ordinarily I have to eat carbs with every meal and it's a huge adjustment to not having big portions of them. I'm trying to keep having small amounts of sweet potato/squash/parsnip and fruit with my protein and so far that's helping. I had a really nasty experience this morning before I ate where I had to lie on the floor I was shaking so much (whilst waiting for breakfast to cook). My heart was pounding, I was sweating. It got better once I got some strawberries and sweet potato into me plus the rest of breakfast and I feel much better now, though still pretty weak and low energy, but I'm just scared it's going to happen again and get worse. At least I have a housemate who's a doctor I guess if I properly crash no amount of food is then going to make me pick up for a bit, which is what I'm most scared of.

 

Just hanging on in there for now, trying not to stress my body further, taking it very easy etc. I have all my food prepped so I can just eat when I need to again. But yes, really scared that given a few more hours my body is just going to crash further and I won't be able to get to the stage where my body is burning fat.

 

So your stories/support would be much appreciated! I'm so excited to think of how much better I will feel if I can stick with this. I know the whole eating lots of carbs and my blood sugar going up and down is making me worse. I know having fat as fuel should mean I have more consistent enegy at least.

[Kirsteen]

Hi Snailytrail, welcome, I have had M.E. for about 7 years now. I can so empathise with the shaky, trembly, sweating lying on the floor feeling and the horrible horrible crashes. I wish I could say W30 has completely cured me but I have to be honest and say it hasn't, I think it'll take more than just diet but I also have to say I have seen real improvement on it.

 

I've been eating mostly W30 since last September. At that time I was also still undergoing cancer treatment (that finished about 3 weeks into W30) The treatment had caused major crashes where I couldn't even get to the loo without help, every time i tried to stand, I collapsed shaking, sweating etc. couldn't stand noise or TV etc. In fact I couldn't complete the treatment they wanted to give me because of the M.E.

 

W30 was a bit of an effort at first as I couldn't stand to cook or prepare food so it took some juggling but it was really worth it. The first thing I noticed was that I could cut out painkillers. I was on Tramadol for pain and occasional Diazepam for muscle spasms but I haven't needed either of those for months. I don't even have any in the house now.

 

I had really bad IBS, as do a lot of people with M.E., that's practically normal now. I've come off the Buscopan, Loperamide and Movicol rollercoaster. My digestion has improved, though I still take enzymes (I also have pernicious aneamia and low stomach acid) I do have more energy, it may be nowhwere near "normal" whatever that is but I can get out the house 2 or 3 days a week now and get out of bed and putter round the house most days. I have had a few total crashes but that's because I've felt better and have pushed beyond my limits (I've always been terrible at pacing) and have paid the price but i do notice I'm coming out of them quicker.

 

I really would recommend trying W30 to anyone with M.E. Preparation is the key. i love my slow cooker as I can just dump stuff straight in it and ignore it and when I've got the energy to cook, I cook in really large quantities. I keep cooked veg in the fridge and cooked meat etc frozen in single portion sizes so when I don't have the energy I can just throw it all in a pan and heat it up together. I also buy a lot of frozen or ready prepped veg as that too saves energy.

 

I really, really wish you the best of luck with this. Any questions at all don't be afraid to ask. If it's about anything to do with M.E., if you don't want to ask it publicly you can always PM me. all the very best, good luck and do keep us posted how you get on.

[snailytrail]

Thank you so much, I really appreciate you taking the time to reply.

 

I think for me this first week is just so scary. I'm not feeling quite right today but I guess no one does in their first week!  I just want to avoid crashing at all costs.  I baked a few sweet potatoes this morning so that at any time over the next few days I can have a few bites if I feel like I did this morning, but haven't had to have one yet today. So that's at least great!  I keep saying to myself that it's extraordinary I've gone 3 days with no grains, that was unthinkable to me before now.

 

I'm being realistic, I'm not expecting a cure from this, but an improvement would be nice and I'm so pleased you've at least been helped by it. I guess for now I just need to grit my teeth and get through this. I also need to have my carer come and cook some more big meals and freeze more portions - I have a few in the freezer but there's still such a huge volume of food prep with this compared to sticking a low fat/high carb ready meal in the oven!

[Terresa]

I too have ME, and have been living with it for 9 1/2 years.  I have also had Hypothyroid since I was in my early teens.  I had to cut out grains and nightshades 2 1/2 years ago, due to an ulcer, and digestive issues.  

 

I know now that high carb eating, even before the ulcer, was making the joint and muscle pain worse.  About a year ago, my doctor, concerned about my low carb diet, had me reintroduce some whole grains.  One serving a day was all my stomach would tolerate, and my ME symptoms got worse.  Over the winter, I had pneumonia 3 times.  By April, I had been on Nexium (stomach acid suppressant) for two years.

 

Early this year, I discovered Paleo, and then Whole9.  I've done 2 consecutive W30s (May and June) and am now remaining compliant, with the exception of the reintroduction of wine this month.  I weaned myself off the Nexium in the first two weeks of my first W30, and have not taken it since.  My hypothyroid symptoms are all but gone (YAY!), I actually have an appetite and a functioning digestive system, the quality of my sleep has improved, and my pain level is down.

 

I knew that it would take more than one W30 to heal my digestion, simply because I was convinced (and still am) that the Nexium was part of the problem.

 

My best advice:

1. make use of the wealth of knowledge and support here;
2. follow the meal template;
3. read all labels carefully;
4. give yourself time to learn and to heal;
5. remember that you're healing, not dieting;
6. and always know that you deserve this healing!

This isn't a miracle cure, but it is healing in so many ways!  Just finding something that we can do for ourselves that gives us the feeling that we do have some control over what happens with our bodies is an amazing empowerment and relief.  At least I know that this is how I feel.  After years of feeling helpless and at the whim of ME, this feeling, this way of eating, and this community are gifts that I treasure.

[snailytrail]

Thank you, it's great to hear your story

[Bet]

Snaily, I don't have ME, but I do have whacked out blood sugar regulation and I can get the shakes sometimes if I haven't eaten. This is my first day on W30 and I'm feeling a bit shaky right now! What can help is to keep some coconut oil around and just swallow a teaspoon of it. It will give you some energy (fat energy is better than sugar energy) and tide you over.

 

Or, if you can, get a coconut from the store and crack it open and keep some of it in the fridge. It is a great snack. You can also grate it and keep it longer.

[Terresa]

I carry almonds in a zip-baggy in my purse at all times for just this reason.  I've never tried coconut, but that sounds yummy too!

[snailytrail]

Coconut sounds really great. I bought some shredded coconut only to find it has sulphites in it (I think! Some forbidden preservative anyway). I need to go and buy some other coconut products I can eat. Good luck with your whole30 Bet. I did feel a bit shaky again this morning but had a sweet potato prepared so a few bites of that sorted me out. The interesting thing is I thought I'd be eating them with every meal but I've really only had a tiny bit a day.

[Bet]

If you can find a whole coconut in the store, it's not that hard to open them and harvest the meat. If you shred and store it, one coconut will last awhile. Just make sure you shake it and it has liquid sloshing around in it. And don't wait too long to open it (we use a drill to make a hole and drain out the liquid then a hammer to smash it). If it smells/tastes soapy, it's no good. You can also drink the water.

[Autumnangel]

Hi, yes, have had a long history of chronic fatigue, sensitivities and fibromyalgia and have tried various things with some success over the years, but never complete relief and have also never gone completely grain free for any length of time.   I have a problem it seems with anything starchy!

 

I have read so much over the last few years about the paleo way of eating and have simply not been able to stick to it or start it successfully.  I really do need to be able to get through the first few days and the emotional as well as physical withdrawal from the 'comfort' of sweet and starchy/fatty stuff.

 

I am hopeful as this site seems to be perfect in the way that it encourages the support and lays everything out to simply.  Will be very appreciated to stay in touch through the forums and hopefully all is moving in the right direction.

[snailytrail]

Good luck Autumn, what day are you on? I'm feeling much better now I'm onto my second week and I'm just so relieved I'm still able to do this. I really didn't think when I started that my M.E would let me get past the first few days. I keep saying in disbelief 'I did it?! I'm on Day 12!!!' It's lovely to have the worst behind me.