CFS relapse?

Oh wow. I’ve had this for probably 3 years and it really sucks. My adrenals go crazy (well from I’ve read it seems it’s my adrenals...) whenever I cheat on my diet and don’t keep my blood sugars stable. And I’m not a diabetic! 😒 But I suppose that what I have to do to live a semi normal life. 

Funny you say that, when I kept my diet and everything was fairly stable... if I ate too many carbs I’d get super sleepy in the morning/early afternoon. But at night if I ate too many carbs... I’d get anxiety! It’s crazy how this affects everyone differently!!! 

Carbs can have the effect of a quick boost but soon flop to make you feel sluggish x

Is good you have found something that helps at least one of your symptoms Maureen . And helping you sleep is a major one. It makes no difference if I sleep or not. Never ever feel refreshed of recharged after any sleep. Infact quite the opposite x

I’ll definitely look into the holy basil. I tried maca to balance out my hormones but it made me extremely anxious and gave me crazy mood swings. I can usually help my symptoms through a moderate carb diet (NO bad carbs... only whole grains) and zero processed foods. But of course after I while I start to cheat and my symptoms come back worse than ever. But while I’m following the diet, my fatigue gets better in a way that I can actually work through the fatigue. And in the afternoons, I feel great! Last night I was finally able to sleep 4 hours straight and then slept 2 more hours (not straight) but hey I’ll take what I can get for now! Usually I don’t have trouble with insomnia when I am strict about my diet. I suppose I have no choice but to continue with it. 

Hi Janet

I understand that feeling all too well of feeling absolutely dreadful on waking and it can take all day for me to feel a little better...then bam! straight back to square one the following morning.

That symptom has never gone away in over 15years.  I am just glad I no longer have the jumping awake every couple of hours or staying away all night.

This condition is the pits!  Here's hoping we can find some respite soon x  

 

Hi Maureen. Im anxious to try holy basil. Never heard of it. You said youve been taking it 9 months but have had very sleepless nights. Did you leave out "few" maybe or is it not working as well? And I dont understand your last paragraph saying youve stopped fighting the severe cfs symptoms, meaning youve gotten better or youve given up? Sorry my comprehension stinks. Lol

I wake every two hours usually. Sometimes hourly. I don"'t pick up at all during the day. Usually worse by the time I have been up an hour or less ! All my symptoms have been worse over about the past six years. It specially the past three . We moved house , death of my mother which was surrounded by negligence so I have spent two and a half years with the investgations of all that . Our 23yr old cat died last may. All manner of horrible and things which cause stress . And stress and ME do not mix ! X

I read it that Maureen is now housebound due to her symptoms overpowering her.

On re reading her post it does read sleepless nights for past nine months. But I think she means the opposite. Is that right Maureen ? X

Hi Janet 

You're right Janet!

Sorry about that brain has never been right since head injury!

What I should have said was that I have had VERY FEW SLEEPLESS NIGHTS since taking the Holy Basil this past 9months.

I have severe CFS and score 20 on the CFS scale.  But this past 18months I have not been able to leave the house, get dressed, and I am bed bound for the majority of the time.

I agree with you Janet that Stress and CFS is a very bad combination. Hugs to you x

 

Hi Tracy 

I am really sorry for the confusion in my post Tracy...my brain is mashed!

It  should read I have had VERY FEW SLEEPLESS NIGHTS which has been amazing after 15years of not sleeping, being awake all night, etc.

What I tried to say but not very clearly was that I have had to stop fighting against the symptoms as I was using the adrenaline/cortisol that my body was producing to try and do the smallest of tasks.

I refused to give in to it, refused to accept it, tried mind over matter, etc.  Nothing worked.

I was warned by a CFS Specialist that if I carried on pushing myself that I would end up totally bedridden and that is pretty much what has happened over the past 18months.

The Holy Basil I found it has a subtle calming effect and I did not expect to see such a great improvement in my sleep pattern.  

I buy mine (Swansons capsules) online from Health Monthly the cheapest source I have found!

The capsules are more potent than the tea.

Hope this helps and here's hoping for better days to come

 

 

Hi Tracy

My apologies my brain is somewhat mashed!

So sorry Tracy it should have read "very FEW sleepless nights since taking Holy Basil these past 9months.

I will try to explain my last paragraph... I was told by a CFS Specialist a good few years ago that if I carried on trying to fight against my symptoms and push through the extreme fatigue I would end up bed bound and that is pretty much what has happened over the past 18months.

I am sorry for being so vague I actually do not realise what I am typing half the time!!lol

Hugs to you x

 

Oh its ok! Janet explained it to brain foggy me. Lol! I did the same thing. I pushed myself working 2 part-time jobs and hurt myself. I didnt realize it was POTS making my heart pound and race while busting my butt in a nightmare kitchen job. I thought i was going to keel over running the dishwasher with tons of heavy plates. And now i cant work at all. My heart hurts if i stand too long or do too much upper arm work. And i feel more sick then before. Think i reactivated the ebv. ? Had this for 27 years and i feel like my hearts had enuf. I need to take krill oil. Just started vit e with my antivirals and midodrine. See if that helps. I think it does. Anyway, at least you get dressed!!!! LOL i stay in jammies all day if i dont have a doctors. Ugh. Thank you!!

Amazing brain foggy me worked it out lol . Don't work tacey . I constantly can't remember think of names of common household items. X

I get mixed up but also the keyboard writes it's own words too! X

I have been housebound for years now. I usually get dressed because I just don't feel right still in night clothes. As it is it always seems like night time. Comes round so uicklg each day as it takes me a few hours to sort myself out. And I can't say in bed because I can barely move and I don't want to end up totally unable to move. I have to sleep semi upight since arm injury caused frozen shoulder a few years ago. Not ideal but is all I can manage. Is a begger because I can't wait o to to bed , but equally can't wait to get up again. But before I get up i am thinking I will be glad when it is bed I'm again. And I haven't even got out of the bed yet ! Mad ! X

Hi Tracey

So sorry to hear that you have suffered for so many years.

No sorry Tracey I can't get dressed!

I've not been dressed at all Since Sept 2016 that was the last time I left the house.  

From 2011 I was only able to get dressed to attend GP and Hospital appts but could only be taken there by my friend in my wheelchair...

I now have telephone consultations or home visits.

Before 2011 I could get dressed probably 2days a week and get out the house on average once a week.

I bought myself an early Christmas Present last year...an Electric Adjustable Bed off an online Shop!

It's flipping amazing!!!  

Being able to be moved effortlessly from lying to sitting(well reclining really as I can't sit upright for long)!

It's so exciting LOL!!!!

 

Hi Janet!

You did really well there as I read the post and it made no sense!! lol

Oh my word I have same problems with words and typing rubbish! xo

 

Hi Madai

I did a lot of research before I started taking supplements as I didn't want to make myself worse.

I  tried Ashwaghanda first but it made me jittery and restless.

The Holy Basil just calms me with no side effects.

I had to have my gall bladder out a couple of years ago so was forced to change my diet drastically as I could not tolerate fats.  Also could not eat cake, pastry, sugars, chocolate...all the stuff I relied on for years to give me a short term energy boost.

So like you I no longer eat processed foods or ready meals.  No potatoes, very little wholemeal bread.

Mainly fish and chicken, Home made vegetable soups.  I cannot cook for myself so I have help with these things.

It sounds as though your body is producing high levels of adrenal hormones, probably cortisol which gives you the feeling of overcoming the fatigue then as it comes to night time when levels should be low so you can sleep, they are still high.

I feel slightly better because I am now getting the sleep, but that could also be because I do not do anything strenuous or push through the fatigue with adrenaline(I  have been in fight or flight mode for years and jumped at the slightest noise...this has calmed down a lot with the HB)!  ooooh I've just found the smiley faces!!!! lol

 

Oh good for you! Ive always wanted one of those. But sounds like you need it way more than me. Gosh im so sorry you've been housebound that long! See, i just reread your post and misread the getting dressed part. Duh. I get dressed maybe twice a week especially after my hot Epsom salt bath. Sounds gross, i do sponge baths in between and change pajamas. Lol. Have you tried magnesium supplements? So yours all started with a head injury?

Hey janet thought I'd ask you first before a new discussion as it may have already been discussed in past. Jow old is this forum? Anyway, have you heard of Dr Petrovic and his cfs cures? Was just wondering what it was and if anyone experienced it. ? 3,000$$. I couldnt find him on Google. Wonder if hes been taken off internet. Lol

Hi Tracy

I  would definitely recommend it as the best aid ever...best £400 I have ever spent!

Showering every day is a major problem

Yes I take Magnesium supplements and I have found it does help with the muscle pain, it doesn't get rid of it all together but it's definitely much better. I have been on Magnesium about 7years.

I take L-tryptophan for brain,  high dose Vit C, and B12 Methylcobalamin self injections daily(I pay  for private).

The only NHS(UK) prescription I have is Levothyroxine!

Not sure how old this forum is . not many years. Never head of that man at all. He was probably taken off ! There are no real cures for ME. No one 100% knows exactly what it is so how can something be 'cured' if it isn't determined what it is ?

I am always skeptical about such things.

Very true! I bet they did. I did find a forum mentioning his name saying they were skeptical also and that his regime was high antioxidants and some formula for the immune system. Heck its probably transfactor plas/myc that my doctor special ordered. 80$!!