Help and advice on crashing

[Ellie_Finesse]

Hi everyone I am from uk and am new to these boards!
I am feeling rather low at the moment and fed up! Would really appreciate some advice from you lovely people!

After spending 2 1/2 mths off work I finally went back on phased return doing 3 mornings a week, with days off inbetween. I work in a primary school as a TA working 1:1 with a child in mainstream setting and am very lucky to have employers that are very understanding.

The problem I have, is that I am really struggling to function and keep crashing! Its not as if I am doing much..... By not doing much I mean, 3 mornings working and a minimum 80% resting when not working and I am still crashing! Sometimes it will take a few days to happen, then bam am out for 4! Other times it can happen almost instantly or day after and may not last as long.

On my good days, I still cant move very fast as I have muscle weakness in my legs (jelly legs and sometimes they are like lead) but I can move around the house with reasonable ease, which is why thought I could manage to go back to work! The more I use them the worse they get and when its severe its my whole body. Tuesday I was sent home early because I could barely stand and by the next night it wasnt as bad. I was very stupid yesterday and went in and forced myself to complete the morning, my reasoning on it was.... Its just today then off till after half term. Now I am paying! When standinng/walking it feels like I am going to collapse, but I know I won't, if that makes sense. I now couldn't sleep last night because I slept in the afternoon.

What am I doing wrong and is there anything I can do to help myself manage it better like food, supplements etc?

This is really getting me down am housebound most of time on sofa or in bed, if I'm not working!

Have had this condition for years although only recently after all relevant neurological test and scans to rule out other conditions are they now saying that they deffinately think I have ME. Years ago it was mentioned that I might have ME by my GP but was never formally diagnosed and was basically sent away with no information. This relapse is my first attack in about 9 years and it has come back with a vengeance..... It was no where near this bad when I had relapsea in the past!!

Any advice will be much appreciated thx

 

[jeff_w]

The problem I have, is that I am really struggling to function and keep crashing! Its not as if I am doing much..... By not doing much I mean, 3 mornings working and a minimum 80% resting when not working and I am still crashing! Sometimes it will take a few days to happen, then bam am out for 4! Other times it can happen almost instantly or day after and may not last as long.

Any advice will be much appreciated thx

Hi @Ellie_Finesse -

Welcome to the board!

It sounds to me like you're not well enough to work right now. If you keep crashing, then that is your body's way of telling you important information. It's best to listen to it.

My concern is that by continuing to work, you will make yourself worse. It's happened to a lot of us on this board, and you could even end up completely bedridden.

I know this isn't "happy news," but I'm being completely honest with you. If I were in your shoes, I would stop working immediately.

 

[Keela Too]

Sadly this advice from @jeff_w is true. Please be very careful. I had to leave my job - and even with that it is a tough adjustment to a life to scale it down. There are NO easy answers with this illness. How I wish there were. ((Hugs))

PS I have replied to you on another forum too and given similar advice to the poster above. I was given great advice near onset, that I believe helped me to avoid ending up fully severe - however be in no doubt, this illness has severely curtailed my lifestyle. xx

 

[jeff_w]

I was given great advice near onset, that I believe helped me to avoid ending up fully severe - however be in no doubt, this illness has severely curtailed my lifestyle. xx

@Keela Too -

I'm glad you were given advice early on. I wasn't so lucky. I kept pushing through, just like @Ellie_Finesse is doing. I ended up bedridden for nearly 6 months. I then found an excellent specialist, and I'm improving, but I'm still not well enough to go back to graduate school.

It's extremely important to not push with this illness. You need to rest and stop crashing if you want any shot at improvement or recovery. Every time you push yourself and exceed your energy limit, you are playing with fire. You will crash, and crashes often lead to long-term and even permanent damage.

 

[Kati]

Agreed, you should not be working if you are crashing just trying to maintain your current level of activities. Thing is the type pf job you are doing is very taxing for the ME brain. Noise, sensory overload, upright, cognitive demand of doing work with a special needs student.

 

[ahmo]

So sorry to hear how unwell you are. Please listen to the voices saying

Here's a very interesting thread re using extreme rest as a way to avoid crashing and help healing.

I've been using a high antioxidant strategy this year, which has kept me just back from the verge of crashing. It's based on recommendations of Martin Pall. there's a vid link for him in my signature. But the website has become unavailable for some reason. There are threads about him, if you want more info, re his NO/ONOO theory. The short form is that we're very poor at compensating for oxidative stress. The more you push yourself, the greater the problem. I'm pasting in a list of antioxidants he suggests. He also feels FIR saunas are very helpful, and avoiding EMFs. (Sorry the list is a bit disorganized.)

I've also found that FMN form of Vitamin B2 has had spectacular results in lowering my oxidative stress. I know I'm throwing out a lot of information, but you can digest it in your own time.

I've been using green tea and carrots as my mainstay, as well as a number of other things from the list. I hope you feel better very soon.

http://www.thetenthparadigm.org/therapy.htm Below taken from the varied protocols quoted by Pall:

flavonoids, including “bioflavonoids,” olive leaf extract, organic botanicals, hawthorn extract

Flavonoids (flavones, rutin, hesperetin and others)

Grape seed extract (flavonoid)

Four different flavonoid sources: Ginkgo biloba extract, cranberry extract, silymarin, and bilberry extract

GABA agonists—GABA acts as an inhibitory neurotransmitter to lower NMDA activity—these include the drug neurotin (gabapentin)

Histamine blockers—mast cells which release histamine are activated by both nitric oxide and vanilloid stimulation (Chapter 7) and may therefore be part of the cycle mechanism

Spirulina—blue-green alga is a concentrated antioxidant source

Artichoke extract—as flavonoid source?

Carotenoids (alpha-carotene, bixin, zeaxanthin and lutein)-lipid (fat) soluble peroxynitrite scavengers

Other phosphatidyl polyunsaturated lipids—this and the phosphatidyl choline are predicted to help restore the oxidatively damaged mitochondrial inner membrane

Zinc—antioxidant properties and copper/zinc superoxide dysmutase precursor

Acetyl-L-carnitine—important for restoring mitochondrial function

Vitamin B6—balance glutamate and GABA levels, lowers excitotoxicity

Riboflavin 5’-phosphate; Vitamin B6 in the form of pyridoxal phosphate

a-Lipoic acid

Valine and isoleucine—branched chain amino acids known to be involved in energy metabolism in mitochondria, and may be expected,therefore, to stimulate energy metabolism; modest levels may also lower excitotoxicity


Table 1. NO/ONOO- Cycle Summary of Individual Agents or Classes of Agents

Vitamin C (ascorbic acid)

Tocopherols/Tocotrienols Gamma form of Vitamin E

Selenium

Carotenoids

Flavonoids

Reductive stress relieving agents

Mitochondrial regeneration agents

L-Carnitine/Acetyl-L-carnitine

Hydroxocobalamin/B12; AdenoB12

Folic acid

Vitamin B6/pyridoxal phosphate

Riboflavin

Other B vitamins

Glutathione/glutathione precursors

a-Lipoic acid

Magnesium

SOD minerals/zinc,manganese, copper

NMDA antagonists

Riluzole

Taurine

Inosine/uric acid

Long chain omega-3 fatty acids

Clinical Trial Data

Agents that lower NF-kB activity

Curcumin

Algal supplements

Hyperbaric oxygen

Minocycline and Other Tetracyclines

Creatine

Lowered vanilloid activity

Carnosine

TRH

D-ribose

Ecklonia cava extract

The mechanisms predicting that these agents may be expected to down-regulate NO/ONOO- cycle biochemistry are presented in my book, as are the clinical trial, clinical observation and anecdotal evidence relating to one or more of these multisystem illnesses.

One important caution: To be effective, these various treatments require, in my view, that individuals avoid stressors that may be expected to up-regulate NO/ONOO- cycle biochemistry. Those include:

Chemical exposure in MCS patients

1. Food antigens in those who have developed food allergies
2. Excitotoxins such as MSG and aspartame that may be expected to increase NMDA activity
3. Excessive exercise leading to post-exertional malaise in CFS patients
4. Psychological stress, especially in PTSD patients

 

[Valentijn]

After spending 2 1/2 mths off work I finally went back on phased return doing 3 mornings a week, with days off inbetween.

Did someone suggest a phased return to work? If you're too sick to work than that's pretty much the reality of it. It's not something that we can "work up to".

On my good days, I still cant move very fast as I have muscle weakness in my legs (jelly legs and sometimes they are like lead) but I can move around the house with reasonable ease, which is why thought I could manage to go back to work!

Your "good days" sound pretty damned bad. If you still felt like that during or after a flu, would you think it's time to return to work? Your body is telling you to rest, and that's the best way to avoid crashes.

What am I doing wrong and is there anything I can do to help myself manage it better like food, supplements etc?

Nothing that helps with PEM. But a doctor should be able to assess you for Orthostatic Intolerance. Most ME patients have difficulties with low blood pressure, low pulse pressure, and/or tachycardia. This can be pretty disabling by itself, especially when upright for a while, and can also contribute to PEM crashes.

This is really getting me down am housebound most of time on sofa or in bed, if I'm not working!

It's better to take care of yourself, instead of grinding yourself down from trying to work when you can't.

 

[Ellie_Finesse]

Hi

Thank you all for your replies!

Reading what you all have said am starting to think that I have gone back to work too soon .... I honestly thought I would be able to manage a couple of mornings! Work has helped in one sense, a place to be and my
mind to be occupied with more than just stuck at home looking at these 4 walls, I love my job and the rewards it brings. I guess I am going to have to reconsider about work, is not something you really want to admit yourself!

Thank you ahmo for all the information you have provided I will have a proper look at that when my brain can digest it!

Have answered your questions below Valentijn

Because I wanted to go back to work bit knew that I could not go back full time, my employer made suggestion that I can go back on a phased return lasting, within reason, however long I needed it. They advised me to try 3 mornings for 4 1/2 hrs with days off inbetween to rest. My boss also told me to recognise the signs and stop, even if it means I don't go in or go home early. To be honest they have been really good.

I know written down my good days seem bad but the way I see it, I can walk and I feel ok in myself so to me they are good days!

Not sure what an orthostatic intolerance is but as to others you mention all is fine. Apparently I have blood pressure of a 25 year old and am 40 lol.

Thank you all again

 

[Valentijn]

@Ellie_Finesse - Doctors often won't notice low blood pressure as a potential problem, and almost never are aware of the concept of pulse pressure unless they work in A&E and are routinely dealing with people suffering from massive blood loss.

If the difference between the systolic and diastolic measurements is less than 30 or so, it can make you feel pretty awful. But the systolic and diastolic measurements can look quite normal in isolation, such as being 110/85.

The other factor is that blood pressure and/or pulse pressure might be completely normal early in the day or when completely rested. So if you see your doctor when you're feeling decent, your blood pressure is probably pretty normal at that time. Yet over the course of several hours of sitting upright or standing, it might slowly drop until it's gotten low enough to make you feel awful. If laying down generally helps when you feel awful, OI should definitely be kept in mind as a likely culprit.

Some studies have found OI to be a nearly universal problem in ME patients, and it really should be a routine part of symptomatic investigations for us. Unfortunately NICE muddles the issue by saying that testing for it should not be part of the routine diagnostic process, which might contribute to many doctors thinking it should be discounted entirely.

Regarding missing out on work as a meaningful activity: is it possible that you could privately tutor children at your home? @SOC is another forum member who does that in the US, though she's being medically treated properly and sounds like she's in much better shape than you are currently, or at least more stable. Then you could avoid the exhaustion which can come with traveling to the school, interacting with a lot of people, and even counteract potential OI problems more easily by sitting with your feet up while tutoring.

Most of us had to shift our activities quite a bit in adapting to the illness. Some activities we can do differently - I can still garden a bit, but it has to be 5-10 minutes at a time, and usually while sitting on the ground. And I can still experiment with cooking new recipes, but I mostly do it with pre-chopped ingredients in a slow cooker where there's little time-pressure and I can spread the process out through the entire day. Various games can also be an easy distraction, or non-intensive hobbies such as knitting, writing, or painting (with lots of rest breaks).

 

[Ellie_Finesse]

Thx for the asvice and information @Valentijn I will look into it

Am afraid I can't privately home tutor because I am no a Teacher, I'm a Teaching Assistant and work 1:1 with children who are SEN (Special Educational Needs). I will just have to think of what my next steps are and start learning to pace and recognise when I need to stop!

BTW my husband has said to me after reading some of your comments that he told me so and maybe I will listen him now lol.... Bossy so and so haha

On a serious note your all right! Thank you

 

[Sushi]

BTW my husband has said to me after reading some of your comments that he told me so and maybe I will listen him now

You have had great advice here. Most of us replying to you "didn't listen" and kept working and ended up in an endless crash that my prevent us from ever working again. Though I am cautiously hopeful as I am seeing one of the few specialists in this disease. Still, it has been 9 years since I worked.

Best wishes and welcome here!
Sushi

 

[Ellie_Finesse]

Good luck with that @Sushi I hope it works out for you and thank you

 

[jeff_w]

BTW my husband has said to me after reading some of your comments that he told me so and maybe I will listen him now lol.... Bossy so and so haha

Your "bossy" husband deserves an award, @Ellie_Finesse. A lot of people on here have had families not take us seriously. Some loved ones have even pushed us into continuing with work or school, even though we were as sick as you are. It's great that he sees that this is real and is looking out for you.

On a serious note your all right! Thank you

Good luck!

 

[TiredSam]

Hi Ellie,

I agree with everything above, but ...

Like you I am a teacher (adults and university students) who doesn't want to stop work. At the moment I am teaching about 20-25 hours a week whilst managing my CFS. Perhaps if I describe how I do it there might be something there to help you.

Firstly make sure you really understand pacing and pre-emptive resting, here's an article on a website that helped me a lot:

http://www.cfidsselfhelp.org/library/4-nurture-yourself-with-pre-emptive-rest

At the moment on my days off I have a pre-emptive rest every 2-3 hours for half an hour, whether I feel like it or not (well that's my target anyway, I've had my three rests today and am still going, I missed the morning one yesterday and was good for nothing all day with a headache and tiredness, so I'm still being reminded of how important it is until I finally get the message ...).

Secondly I have delegated /stopped helping out with things like shopping, housecleaning, cooking etc. I'm very lucky to have a wife who accepts that, sounds like you're lucky with your husband too.

You said you rest 80% of the time when not working so you probably don't need telling any of the above. I just mention it because I used to think I was resting when I watched TV on the sofa and only did a little sport, it took me a while to really get the message that it means in silence, eyes closed, and the rest of the time now I hardly do anything that can't be done sitting down, and virtually nothing that involves walking, lifting or moving a lot.

I'm lucky enough to be able to sit in front of my computer working (preparing lessons) for most of the time if I take my pre-emptive rests regularly. Apart from that I don't do much else, hardly ever go out, early nights, hardly do anything at the weekend. That's the price I pay for being able to carry on teaching, and I'm happy with that, consider myself very fortunate and have a good quality of life.

When teaching, I make sure I am sitting down as much as possible. I sometimes stand or walk slowly around the classroom, but mostly I sit down. I always take a tupperware box of sliced apple which I can have a bit of if I start feeling wobbly. For some reason regular snacking throughout the day helps, fruit or salty stuff gives me a boost, or a bread roll with fatty cheese. I mean I eat something during the lesson as soon as I feel wobbly, I don't wait for the break. It's a bad example I know, but I have to do it and no-one's commented on it yet.

If you have a break between lessons, make sure you go somewhere quiet where you can recline / lie down or have a snack until the next lesson. A friendly chat with colleagues is tempting but will cost you too much energy, you need that rest if you are going to make it through the next lesson. It sounds like everyone is aware of your condition so they should understand. I have to do it secretly in a room two floors up no-one knows about or in my car, and risk offending friendly chatty colleagues by cutting them short and escaping.

When teaching I have my lesson plan in front of me at all times and list of students names in case of brain fog.

I make sure my lessons are as stress-free as possible by preparing them at home thoroughly. I spend a lot of time doing this, sitting in front of my computer and taking rests when I need to. On the rare occasions I've had to cancel lessons it's usually been because I was too ill to prepare them. If I can manage to prepare a lesson thoroughly, the classroom bit is easy. When preparing, you are perfectly entitled to make the lesson as CFS-friendly as possible, so lessons that involve you moving around as little as possible, or that keep the pupil busy while you have to do little more than monitor. Don't feel guilty about this - it's a happy coincidence that the more active a student is the better they learn, so a CFS-friendly lesson for you is a more effective lesson for them! I don't know much about special needs kids and I know 1:1 can be very intense, but if you could find activities that keep them engaged for longer periods of time without you having to do too much, or if you had 2 kids they could do pairwork while you monitor?

I consider my CFS quite mild and yours could be much worse, so don't take anything I've said as encouragement to carry on working if you're not well enough, if it's that bad I agree with everyone else - stop overdoing it now or risk making your condition worse. But if you must carry on (2 days a week? 1 day a week?) then maybe one of the above suggestions may help.

Very best of luck to you.

 

[Ellie_Finesse]

Hello @TiredSam thank you very much for your advice I will certainly take on board what everyone has said. It feels good to speak to others that understand what you are going through. Is not an easy thing to explaib to people!

I am only just starting to get over the crash from nearly 2weeks ago. Was due back to work yesterday but I didnt go in as thought it would be bad idea. But I have to say its a nice feeling being able to sit in a chair and not have to spend most of time lying down cause you cant hold your body up

Have just got back from docs, they still dont have the letter from the neurologist that I saw about 4weeks ago. They are going to chase that up so she can follow through recommendations. I explained that neurologist recommended I go to ME clinic and see rheumatologist to rule out anything that may be due to my hypermobility. Apparently waiting list for ME clinic is very long, I could be waiting months She checked me over and said 'yep You have hypermobility and how about some physio' her reasoning was to help strengthen my joints and muscles as they are not being used properly. I just agreed! As she said it might help.

She has been very thorough and has ordered more bloods I can only remember about B12 not sure of others. Doc has also signed me off for couple of weeks and told me to get some fresh air and go for a little walk if I am able, which I do anyway.

 

[jeff_w]

Hi @Ellie_Finesse -

It feels good to speak to others that understand what you are going through. Is not an easy thing to explaib to people!

Yep. Most people don't get it at all.

I am only just starting to get over the crash from nearly 2weeks ago. Was due back to work yesterday but I didnt go in as thought it would be bad idea.

Oh, wow. As sick as you were, you really didn't give yourself much time off at all. It's quite dangerous to go back to work as soon as you get over a crash that was the result of that job. If I were in your situation, I'd take at least several months off, ideally more than that.

I hate to say this, but true improvement/recovery from ME/CFS generally takes years -- definitely not just a few weeks!

She checked me over and said 'yep You have hypermobility and how about some physio' her reasoning was to help strengthen my joints and muscles as they are not being used properly. I just agreed! As she said it might help.

My understanding is that physio involves exercise, correct? If so, then this is NOT a good idea for someone with ME/CFS. If this person is recommending exercise, then they clearly have no clue about how to deal with ME/CFS. You're very likely to become worse as a result of physio.

She has been very thorough and has ordered more bloods I can only remember about B12 not sure of others.

Ordering extensive blood work sounds good. At least they did something right.

I know this isn't fun to hear. Please think all of this over. Hopefully others will chime in here as well.

I'm concerned that between going back to work and physio, you're very likely to get worse and could even crash in a major way. Either one of those on their own is dangerous. Combined, they're even worse.

To put it bluntly: It sounds like you're headed towards a disaster.

 

[Ellie_Finesse]

Hi @jeff_w

Oh, wow. As sick as you were, you really didn't give yourself much time off at all. It's quite dangerous to go back to work as soon as you get over a crash that was the result of that job. If I were in your situation, I'd take at least several months off, ideally more than that. I hate to say this, but true improvement/recovery from ME/CFS generally takes years -- definitely not just a few weeks!. .

I understand what you are saying and you are right, what ever I have, I have had since my early 20's, docs have said for years they think it's ME but have never been actually diagnosed with it. It would appear to go then couple of years later would come back. 9 years ago was the last time I had it bad, this time is the worse. In that time all was fine ish, I lost weight got into cycling and last summer due to fitness levels going right up decided I was going to work towards doing the London to Brighton event. Then in September I had a nasty accident on my road bike, I skidded on gravel fell off hit my head and damaged my ribs. From then on everything went pair shaped. I got back on my bike as soon as I was able but things weren't the same, Migraines were worse, couldn't breath through my nose and generally my fitness wasn't as it was. Then in Februaury I went to docs cause I felt dizzy again due to what was thought as a migraine and doc gave me triptans and amytriptalyn as preventative. OMG for next 3 days was literally off my rocker, never took anymore after that and never recovered. I swear the combination of all that happened set it off and the meds was the last straw.

My understanding is that physio involves exercise, correct? If so, then this is NOT a good idea for someone with ME/CFS. If this person is recommending exercise, then they clearly have no clue about how to deal with ME/CFS. You're very likely to become worse as a result of physio. I'm concerned that between going back to work and physio, you're very likely to get worse and could even crash in a major way. Either one of those on their own is dangerous. Combined, they're even worse.

I did try to say that but she was quoting that excercise helps boost serotonin and then my mum chipped in. I gave up in the end. I will give it a go but I won't be stupid and I will make it perfectly clear if I feel at any time it's too much I will stop it. I really don't want another crash like the one I have just had. Work have been really good, they want to help and they have said that they don't want to be responsible in making me sicker. They are going to speak to occupational health for advice in the hope that they maybe able to move things along in the terms of getting seen quicker so I can get help. I want to try Pacing along with CBT but not GET, after what I have read it's too risky. I have also researched the best ME clinics nearer to me but the nearest one is Maidstone and there is no way I am going there. The next nearest one to me is Essex near London which is further away but the lead is a Neurologist and he states that at his clinic he does not give psychological reasons for ME patients. I can either see him as NHS patient or private but on NHS waiting lists are long for ME clinics, I could be waiting months.

I really appreciate all the advice everyone has given thx

 

[Ellie_Finesse]

Ohhhh just to add, my bloods came back, was very quick, they came back within 24hours. They were all clear except my folate levels, I have to take 5mg of folic acid for the next 3 months and no action necessary after that. When I asked about whether a I will need another blood test, she said that won't be necessary but can have it if I want to. Does anyone know why I will only have to take them for 3mths and why no blood test to make sure all ok?