What To Do In A Crash With M.E/CFS & Fibromyalgia

[@clairewelch1269]

Crashes really frighten me as I always think this could be the start of a huge relapse which puts me back in the severe category where I'm unable to do anything for myself again. Meditation to try to calm myself and trying to stop catastrophsizing helps.

[@stephg4273]

Me too. How are you now ?

[@simongarner5340]

I'm hearing more and more good things about meditation for improving your condition.

[@catherinewylie6959]

I guess this is why they say CBT therapy can help? I realize the scary thoughts going on in my head, but mostly it's disappointment. I feel I should be able to push through and I sometimes can when I have to, but if I don't have to, it feels more natural to rest until my battery is recharged again.

[@ianh8284]

Had a crash couple of weeks ago i decided to try and run, next day then bang had no energy to stand. I use to be a cyclist who cycle everyday, so very hard for me to lie down when im in one. Still recovering from this crash but on the up now. Your video helped me when i was in it kept me grounded, thanks. Try tell myself a crash is a healing process for my body. At the moment im one year in, so hoping im one of the lucky few who recovers from it. The loneliness hurts more than the fatigue for me.

[@Katherine-ds2ft]

I think a good tip is to change the language around it. A crash makes me think of the worse and triggers my stress response. I've started using less triggering language- like a "dip". :)

[@lalitaholmesstressfreefast1897]

I agree, if you keep affirming the word crash your brain will keep giving you more of it. It's very negative language

[@simongarner5340]

I had to check myself this morning as I woke up to a barrage of negative thoughts. It's hard when you're low but you don't need to enteratain those thoughts!

[@mashandboo9933]

Really helpful video! Thank you. I started drinking even more water and was shocked to find that in those crash moments, which is everyday or during crash days- the extra water quickly makes me feel better. Also- I have stopped or diminished the usage of the word Crash in my inner dialogue. I feel more relaxed and less frightened about the crashes. Instead, I say to myself " I'm deeply resting". That has a more positive spin to it. It just removes so much anxiety for me. Now I see it as a time to recharge.

[@lambeth94]

My biggest tip (which I rarely manage) is to REST WITHOUT GUILT. I’m a single mum with 2 kids and adhd, so was generally failing to feel effective at home before M.E. There is so much to do in a home, which is easily overwhelming when you’re so weak and achey you can’t move. I lost count of the hours I spent inactive or ‘resting’ that I gained no benefit from whatsoever, as I doesn’t the whole time feeling guilty and aware of everything I needed to do, I didn’t ever let myself enjoy any of it guilt free. Fail/fail! A CBT therapist said later ‘ah so you feel worthless if you’re not busy doing things’ um yeah… I guess?! Interesting and shocking!

[@jimkeys4758]

Thanks again Toby for the regular uploads. We just don't have access here in the US to practitioners that actually have a record of helping people recover from this nasty life sucking disorder.

[@simongarner5340]

This is an excellent video and really helped me over the weekend. I'd pushed myself too much last week and was stressed out that I'd crashed again. I took Toby's advice, tried to relax and did some things I enjoyed. I'm not back to where I was but I'm not as bad as I may have thought I was.

[@CFSHealth]

Great to hear Simon!

[@catherinewylie6959]

In reading the comments, it's comforting to know I'm not alone, though I'm sorry others suffer too. I'm the only person I know who has this problem to the extent I have it.

[@shahilagh]

Crash is common for us but some of them are unforgettable....... I had one 1.5 years ago which was exceptional among all crashes I had over 9 years .... sometimes I get better and want to forget I have chronic issues I remember that crash and it wakes me up that remember that autumn .... i remember the words I used to describe my pain .... as I don’t use those works to describe my current issues they remind me how significant that was...... and also it reminds me it can happen again .... that feeling is compote surrender ....

[@tracyhagler2315]

I had a severe crash/ relapse where I was bedbound from August to November and it's been a slow five months getting back to my baseline since. I'm still not there. My main symptoms during a crash is fibro pain, postural orthostatic tachycardia (POTS), flu like symptoms and the most frightening is shortness of breath and sleep apnea and I can't eat. My nailbeds actually turn blue during my crash. They took me off my beta blocker I had been on for a year because it was causing Raynaud's and worsening of my breathing issues. I am now on verapamil, mestinon, iron, vit b, and vit d because they were all low. I've been on the mestinon for a week and have been able to do more than I've done in months. I've been expecting the PEM to come but it hasn't come. Praying that a full recovery comes instead. I don't like to take meds but I'm so severe without them. My heart rate rises to 170 upon standing without meds and I can't walk to the bathroom. We are all different but exactly what you have said in this video was all I could do to pull out of my crash. Thank you Toby for these videos. Very encouraging and positive for those of us suffering!!!

[@constance4065]

Tracy Hagler Hi Tracy. I have a couple of questions if that’s ok. What exactly is POTS? And when you have a crash, how does it feel? Reason I’m asking is for the past 3 days I’ve felt like a truck has run over me! I feel so bad I can hardly go & that’s with taking my meds! My heart seems to be skipping beats or fluttering, I feel like somebody’s punched me in my stomach, I don’t sleep but about 4-6 hrs a night but it’s not a deep sleep & I haven’t wanted to eat anything in 3 days!! It is a horrible feeling. Think I may have some fever as well. Just wondering if I’m having a “crash”. Thanks for answering these questions, if you have some free time. I would greatly appreciate it!

[@tracyhagler2315]

lucy girl I don’t mind to reply at all. Pots is postural orthostatic syndrome. My heart rate jumps up 30-50 beats extra upon standing. Which causes all sorts of symptoms. POTS is actually Comorbid in people with MECFS. They are using a tilt table test to diagnose POTS which can also be helpful in diagnosing mecfs. This is actually one symptom that they can measure and actually see. During a crash I will have heart palpitations and fluttering. I can barely walk through the house. It seems that I don’t even have the energy to breath. My skin will be burning hot. My husband will swear I have a fever of 104 but when we check it it will be normal or very low grade. I can’t say for sure what yours is but I do have all of these symptoms during a crash. I have a blog where I share some of my story and things that I did to help myself. It may not help everyone but here’s the link www.unspoken-words-of-the-heart.com/post/as-a-nurse-and-as-someone-who-suffers-from-me-cfs-i-want-to-share-5-ways-to-manage-this-illness I think after we go through such suffering we have a passion and desire to help one another out. Praying that you feel better. Contact me anytime with any questions. I don’t mind at all!

[@constance4065]

Tracy Hagler Thank you so much for responding Tracy! When I read the part about the fever, it made things a lot clearer 2 me. I woke up this morning a little chilled but my body felt so hot! I checked my temp & it was 97.1! So I’m so glad u mentioned that part. I still have not figured out why I feel like somebody has punched me in my stomach. Haven’t heard anyone say they have felt that way. I will definitely check out your link! You’re right about wanting to help people with their struggles. I like 2 do that too! Thanks again & I will be praying for you as well Tracy!

[@tracyhagler2315]

lucy girl thank you. Please keep me up to date with how you are doing and what you find out. 🙏

[@constance4065]

Tracy Hagler I just subscribed to your blog. I like that you bring God into your recovery & just everyday life because without him, we are nothing... So happy I found you on here Tracy. Have a wonderful day!

[@stephg4273]

What if you literally feel like you’re in a crash daily

[@monicaapril1006]

Do you have an audio version of your book? While I’m an avid reader, I’ve really struggled reading anything. I’ve found I can get through books if it’s in an audio format though.

[@PokemonTenLV]

does anyone else have muscle twitching with this?

[@wakofish]

TenLettersRap every day especially in my legs, it’ll tense then twitch 5 or 6 times then relax again

[@jalle5873]

Yes, especially when I am relaxing or trying to sleep. I've tried magnesium, which helps some people, but didn't work for me. The only thing I found that helps the muscle twitches is to go gluten-free. My doctor(!) recommended eliminating gluten from my diet, saying that it aggravates the nervous system. Going GF brought so much relief, I was very surprised.

[@dorothygale5032]

Yes I do. It's one of my common relapse symptoms. Not the worst stmptom by any means but there none the less.

[@alien77778]

yes my legs and buttom are the trigger points hard everywhere

[@susana5052]

I’m sure you’re trying to help. Although I have to ask if you suffer from this illness? Good sleep? Doesn’t work at all even if I do sleep.

[@ajc2208]

Good to have a reminder once in a while. Thank you.

[@AhilianFreestyle]

Thanks Toby! Another great video. Really appreciate it.

[@kyehines3611]

I have to see my doctor soon to discuss my constant tiredness, because I'm constantly fatigued, when I get out and have done things like being active I find myself so exhausted that even sleep doesn't help my tiredness. I feel like I must crash, because following these activities, I have to rest for several days and I feel so bad because I don't understand it because when I'm active I can manage a lot. But I still get so tired and it's affecting my life so badly. 😞 I'm just so tired and always so tired all of the time.

[@heathergreenhalgh2289]

😤Can SO relate. I once wrote” I’m TIRED of being Tired,” to my Dr. It sometimes feels like a huge wave - washing over me. Just want to crumple under ITS weight. Waking up, exhausted feels so counterproductive. I hope that you’ve found some ways to recharge and cope over the last year. I’ve finally found a few methods to just allow myself to accept this crazy condition. Ignore what I can’t control- & DO Nothing For my breaks in the day. Getting over guilt/worries/ shame is also a huge part of processing the BAD feeling about some thing that doesn’t make sense and no one KNOWS the cause or cure. I think 🤔 the research might find connections with the current Viral patterns and how long~haulers are in some aspects very similar in the symptoms. Some say our Mitochondria functioning is compromised. Whatever IT is, it sucks the energy right out of many people’s sails. 🙏🏾🙏🏾🙏🙏🏻🙏🏿. Hang In there. Everyone who read this Thread 🧵 of thought! Someone might pick up the needle and figure this out!!! Blessings until then.

[@nm9985]

I’ve been a bad crash fully bed ridden for 6 weeks now. Can’t do anything 😭😭😭

[@niamhseren9913]

Crashess are horrible. I usually just rest and try to eat better more nutritious foods while I’m in one

[@dirkmoolman]

I would love to hear from other "sufferers" (in quotes). A crash for me, takes about 3 days to an entire week, and sometimes, 9 days if it runs over 2 weekends.

[@dirkmoolman]

And yes, it makes me depressed. Cause I know I have to rest, and then when I rest, it feels like my life is just being wasted, going by, counting the days till I die. I wish I could do more. At least I am trying, and reading, and doing my research.

[@mariebrett2179]

Dirk M I just crashed and I feel like u Dirk. It's hard. God bless you, I hope things turn around for u soon.

[@mariebrett2179]

Days weeks and months for me Dirk

[@enrica1998]

I just came out of one. I'm feeling very good (well as good as we can get with this) but I was in bed a lot. I called off work on Monday and Tuesday last week because I still couldn't get up and function well. But it helped. Fortunately, I have a lot of vacation days that they let me take during a crash and for that, I am truly grateful for my employer that understands my struggles medically and mentally and works with me to be the best I can be.

[@sandrawheeler1521]

@@dirkmoolman I have been in a 4 week crash. I am so depressed.As I was doing so well before. This is so bloody hard to deal with. And nobody to talk to...Also my asthma is bad. Symptoms back.

[@douglasvancier7683]

Dude I'm an expert on the subject. I've had CFS for 32 years. I had it really bad the first 2 years starting in 1988 but I gradually got better. Every few years I get relapses and they always last about 3 months. No matter what I do. I am going through a relapse now and it's been like 8 years since my last relapse this bad. I listen to my body. I rest when it tells me to and I do active things when I'm able. I eat well and take supplements and don't drink or smoke and consume low fats and no sugar in the diet. I have tried everything on the planet and nothing cures my CFS or make relapses go away any quicker, they always last about 3 months. After 8 years of feeling great I thought it was gone forever, but it comes out of remission reminding you that it is always within your system. You are correct in saying sleep, rest, hydration and nutrition are key to healing and not touting all these other "cures" that people try to promote. Thank you.

[@donnawiseman3686]

I can relate have both conditions for 30 years I j just had a big crash today ended up in bed scary part it was so bad if something happened like a house fire or a break in I would not have been able to get out of my bed felt like I had been hit by a truck and I am scared how this condition is progressing

[@douglasvancier7683]

@@donnawiseman3686 Bless you. I'm wishing you the best.

[@anna-marieeasmus7529]

Me too. Have CFS for almost 30 years now. I usually relapse after a flu / bronchitis. Very intense three months or less intense 2 years. Toby's advice is the only things that help. I found it out the hard way. I am in a really bad relapse now for 8 months. Starting to feel better but if I do more than my baseline i end up not sleeping for a few days. Resting the whole day do improve my sleep but its a long process. Hope you feel well soon.

[@wakofish]

Hi Toby, I’ve recently gone 20 days without a crash, I was doing my routine which involves a holistic approach but I’ve crashed now. I didn’t change anything in those 20 days, when I come out of the crash should I continue the same thing again? Is 20 days enough of an equilibrium to justify carrying on doing that same thing or should I do slightly less. Pls reply

[@alien77778]

I wondering what do u understand when u hear "crash"??? when I have a crash, I am not able to sit on the computer or do anything 💀 then I just lay half dead in bed in darkness sleeping 4 days without eating, without toilette, without anything - just like DEAD

[@alien77778]

when I watched this video, the only thing in my head: "you never had ME" 😃 it's like the people and "friends" who say: "go a little bit outside for a walk and then everything will be fine again" 💀

[@bobbosworld6795]

When someone tells someone with cfs to just rest when they need it 🤦‍♂️

[@shivanis1537]

Deep breathing ...restorative yoga

[@alien77778]

when I have a crash I can't to anything anymore 🤣🤣🤣 not even stand up to pee

[@andybreedlove]

Same

[@tiffany8154]

How can you tell if you have adrenal fatigue or chronic fatigue

[@alien77778]

u can see in blood

[@andybreedlove]

How??

[@victoriamoody4591]

Omg….I told docs….I’m going into flare after flare….after 22yrs,my language has changed…..A crash…..is a crash…..need help….from my Me friends….thanks

[@royalvictory88]

Do you say things that don't make any sense when you crash?

[@victoriamoody4591]

@@royalvictory88 yes….

[@royalvictory88]

Thank you. I'm trying to help my gf when these happen so any advice is appreciated.

[@mycreativeheart4159]

@@royalvictory88 Roy... as someone with CSF/FM for 50 years and single for the last 30.... I would say she might appreciate the most... if you were to take care of the physical things that she cannot do.... without being asked to do them. Things like doing the grocery shopping, making meals, staying on top of the laundry and cleaning, changing out the bed sheets when she's on the couch. I know these are the main things that would really help me out and that I would be so grateful if someone else were to do them. Then there are those less often occurrences like getting the car serviced or paying bills for her. She might even appreciate help with showering and washing her hair. Consider scheduling a gift... if she's up to it... for an in home massage, pedicure, or haircut. And I agree... when you are so exhausted... it's so hard not only to organize your thoughts into coherent sentences, but sometimes it's physically hard to speak. We may mumble, talk too quietly, stumble over our word, forget words, take long pauses..... just be really patient. Don't force her to remember, hurry up, or "just get on with it".... and don't walk away when she's trying to talk. Love and Hugs to you both! It's hard on both of you. Thank you for figuring out ways to help her!💞

[@royalvictory88]

Odd timing. I'm at the er with her now.