Suicidal exhaustion - how to deal with it

[Esmeralda]

I'm writing on behalf of my wife who has a progressivly worse ME/CFS. She is more or less totally bedbound with "attacks" of an exhaustion that she descirbes as suicidal. Its is unbearable. It does get better if she is playing her cards right, but it seems to return for periods every day. This seems to frighten her quite a bit, a fear and anguish which in itself does not help. She is generally a very positive person, but this development seems to break her down. It has disrupted her sleep pattern which makes it harder to get some energy back in her system. She is in contact with good doctors, but they do not have any new ideas at the moment. She has gotten benzodiazepine in order to calm her down. She is also trying the "usual" ME/CFS strategies and remedies but they does not seem to stop her quite aggressive form of the illness.

Does anyone have any experience with similar "suicidal" exhaustion and have any tips how to cope with it? She is in need of some hope so any positive stories would be appreciated.

 

[SOC]

It sounds like she might be in a push-crash cycle. Does she have a sense of the size of her energy envelope?

As far as I know, there are no "usual" ME/CFS strategies and remedies. Maybe if you shared more about what exactly she's doing, we'd be better able to make some suggestions about what might help. It would also help if we knew what country you are in since some treatments are more available in some countries than in others.

 

[Sallysblooms]

Yes, the country will help everyone know about treatments you can find. I am so sorry. Please tell her there is hope for sure! Finding the doctors that will test and help with supplemments will help her improve.

 

[nanonug]

Does anyone have any experience with similar "suicidal" exhaustion and have any tips how to cope with it? She is in need of some hope so any positive stories would be appreciated.

Having a chronic disease sucks. It sucks even more when you stop having a life because of it (believe me, I know!). There are lots of band aids for ME/CFS, depression, anxiety and the like. But, unless the root cause of the problem is found, your wife will never get well enough to live a normal life.

So, what is my advice/suggestion? Have your wife tested for as many bacterial, viral, yeast and parasitic infections as possible. Have her also tested for nutritional deficiencies. Have her tested for MTHFR mutations. Be ready to spend some money, as I did, because doctors are less than helpful when doing this "shooting in the dark" approach.

I wish you and your wife all the best and I hope she gets well soon!

 

[Esmeralda]

Were in Sweden. I guess "usual" was a bad choice of word from my behalf. She is VERY sensetive to a lot of things so what we have done is mostly getting vitamins, minerals and probiotics in here. And pacing strategies. She has tried some other stuff, like LDN, but has not been able to take it because of side effects. Were quite well read up on diffrent approaches but none she's been able to try has stopped the worsening of her symptoms. We have been able to get in contact with KDM in Belgium and she will hopefully go through some more thorough testing. Now, were the ones "shooting in the dark". Hopefully this will reveal something. But until we get any results from that, which can take some time, we take it one day at the time. Here exhaustion however is getting increasingly unbearable so aiting for test results seems like to long a time. Thats why I asked about any experiences in coping with this type of extreme case of exhaustion while we search for the root cause of her illness.

 

[Sallysblooms]

Has she had B12 testing and the other tests needed? Does she take a good Coq10, l carnitine, magnesium, Dribose? How is her thyroid and coritsol levels throughout the day?

 

[justy]

Hi, i am so sorry to hear about the suffering of your wife. She is so lucky to have a partner like you to support her and care for her.

I tend to agree that she could be in a push crash cycle. If she is severely affected with M.E then this could be caused by very small amounts of activity. When my illness was more severe i was in a constant debilitated state for a long while and every small thing caused extreme exhaustion. I also found that my mood was affected by these swings as well and i had many times where i felt i could not carry on.
It may be that she needs to stabilise with aggresive resting therapy (ART) which basically means do nothing until you feel ok at rest, then and only then very slowly increase your activity, all the while staying within the energy available. This can sometimes make you feel more tired at first. For me i became more exhausted, but slowly, over a period of months i was able to be upright for longer and be out of bed/off the sofa more and more.
It has now been a slow improvement over the past 3 years, and i am still mainly housebound, but able to go out for trips with family etc (i take a wheelchair with me these days)
What also helped me a huge amount was (and still is) daily Methyl B12 subcutaneous injections. I was prescribed 500mcg per day but have ony ever been ab;le to tolerate 300mcg (initially only 200mcg)

If your wife can rest as much as possible (including not talking too much etc) then she knows that she has her visit with KDM coming and that this at least may help her to find some answers.

If your wife is having suicidal ideation then it may be that she has become depressed due to the nature of having a chronic illness. I am not sure what should be done in this situation - some seek help with antidepressants and counselling. But i imagine your wife is too sick for counselling currently and antidepressants can be bad news for M.E sufferers.
Please help her by giving her hope to carry on - she can improve with help - many of us on this forum have regained some better level of functioning that we can live with, and still we hope for more with time.
Take care, Justyxx

 

[SOC]

Were in Sweden. I guess "usual" was a bad choice of word from my behalf. She is VERY sensetive to a lot of things so what we have done is mostly getting vitamins, minerals and probiotics in here. And pacing strategies. She has tried some other stuff, like LDN, but has not been able to take it because of side effects. Were quite well read up on diffrent approaches but none she's been able to try has stopped the worsening of her symptoms. We have been able to get in contact with KDM in Belgium and she will hopefully go through some more thorough testing. Now, were the ones "shooting in the dark". Hopefully this will reveal something. But until we get any results from that, which can take some time, we take it one day at the time. Here exhaustion however is getting increasingly unbearable so aiting for test results seems like to long a time. Thats why I asked about any experiences in coping with this type of extreme case of exhaustion while we search for the root cause of her illness.

Seeing KDM should be a big help.

Do you think her suicidal feelings are psychological (she gets very sad thinking about her losses due to the illness) or neurochemical (she knows she has no reason to feel suicidal, but feels that way anyway). If she's emotionally depressed by this illness (and it's hard not to be) then there are lots of measures to help improve her perspective, a number of which are given in earlier posts. Appropriate psychotherapy can help, too, but not the type that tells her she's not sick when she obviously is. There are psychotherapists who deal with the stress and trauma of having a chronic illness.

It sounds more like she's having some kind of neurochemical crisis, rather than an emotional crisis, but you can judge that a lot better than we can at a distance. You might also want to think about whether the suicidal ideation came after the benzodiazepine. Suicidal ideation is a rare side effect of benzodiazepine.

This is probably WAY oversimplified, but just to cover all the bases -- could it be that her body is screaming at her to sleep? Does she sleep at all during the day, or does she try to stay awake all day?

Does she have symptoms other than exhaustion, like pain, orthostatic intolerance, or flu-like symptoms?

 

[Sushi]

Hi,

I am a patient of KDM. I sent you a private message. If you would like to chat, you can sign into chat in the lower right corner of the page where is says xxx people here. Then click on chat next to the name of the person you would like to chat with.

"Real time" discussion is often helpful to us all.

Best wishes,
Sushi

 

[Esmeralda]

What a tremendous amount of support! Thanks. As for supplements, she has tried coq10, dribose an l carnitine but couldn't tolerate it. Sensitive stomach. She is taking transdermal magnesium . She has tried b12-injections but got worse from it. Were suspecting potassium defiency. We have done som testing with a nutitionist (minerals, coq10 and fatty acids) but still waiting for the results. Hopefully that will result in something. And then there is KDM as I mentioned. I think her suicidal feelings are mostly phsycological. They tend to go away as soon as she feels a little bit better or finds something to put her hope to. Here other symptoms are mostly in the pain department, and over sensitivity to a lot of things. She had a lot of problems with allergies before she got ill so there is something problematic with here immune system

 

[jeffrez]

In addition to standard labs, thyroid, viral titers, etc. make sure to check cortisol levels throughout the day with the adrenal stress index test. Standard docs won't do that, but I think you can do it yourself over the web (just not sure about how that works in other countries). KDM would likely know how to go about it.

Allergies are a classic sign of deficient cortisol and adrenal function. If her cortisol/dhea are low or out of whack, the right supplements can make a huge difference almost immediately. Not that rest won't be an important component of recovery even then, but proper adrenal treatment can make the difference between being fairly functional for basic things and totally or near totally bedridden. Wishing her the best.

 

[Hope123]

I have bad periods but have not been bedbound fortunately for long. She may already have tried these things or they might be too much for her but here is some of what I do during bad stretches. Having a chronic illness means preparing mentally for the ups and downs.

1. Specifically look for 3 good things during the day and write them down; this is also good to do even during good
patches as it reminds you of times that are better
2. Remind myself that the bad time will pass; when I get a cold, I can feel worse for weeks-months but if I wait it out,
things do improve. I sometimes mark the days and weeks but this might make some people more sad. Mark the days
to KDM's visit? Having some sort of resolution helps.
3. Watch some funny TV shows or movies as possible. Or read/ listen to something funny. Distraction works wonders.
4. Indulge in favorite items within reason. If she has favorite foods, buy some. If she wants a particular say CD, buy it.
5. Set goals to work towards, even if they are small ones. Learn two Spanish words a day, knit part of a scarf.
6. Have something to look forward to. I still make plans -- for me, the anticipation of things is as fun as doing them, even
if plans fall through. [Also, there is research to show that getting some instantly makes one less happy than
something planned for and worked/ saved towards.] Plants are nice - I have help gardening - you get to see
them grow and change.
7. Get angry, sad, cry, whatever she feels out. For some people, scheduling a time to do this actually helps out but doing
it all day may result in feeling worse.

Somewhere on the internet is a list of things some people with ME/CFS wrote about low-energy things to do.

On the med side, depression can cause problems with sleep too and that might need to be addressed. Some antidepressants do work well for sleep but she might need to try different ones at low doses to start. In the US, there are some psychologists who consult via Skype/ phone; don't know if any in Sweden?Get some sunlight in the room everyday or failing that, full-spectrum light bulbs, if light sensitivity is not an issue. May help with regulating sleep.

[Or conversely, since it's summer in Sweden, could light be a problem at night?]

She is lucky to have a supportive spouse; don't forget to take care of yourself too. Caregivers can get tired also.

 

[Sushi]

Hi Hope,

I noted your "learn 2 new Spanish words a day." I have been studying Spanish both for these reasons and it seems to help the brain. Even though it is a struggle to beat something like new vocabulary into memory, when you succeed you feel like you have accomplished something.

Best,
Sushi

 

[SOC]

If she has immune issues, AHCC could be a help. That said, she probably should wait until after her immune testing with KDM before she takes anything likely to alter immune function. Might be worth calling KDM's office to ask. Or maybe another KDM patient here knows if AHCC will affect the immune testing KDM does.

Low vitamin D3 is common in ME/CFS, especially among those of us who are house- and bed-bound. D3 deficiency is linked to depression. My ME/CFS doc recommended 3000mg D3 daily until my D3 level is near high end of normal range.

 

[taniaaust1]

Im so glad to hear she has someone to help (you). How long has your wife been sick with this illness?

It has disrupted her sleep pattern which makes it harder to get some energy back in her system.

By this I figure you are saying she's not sleeping during the night (if she is NEEDING to sleep night and day.. she should be allowed to do so. Aggressive Rest Therapy (ART) has helped many of us (myself included) who had this illness quite severe and may be the key of stopping her condition from worsening. It thou takes time.. may take a long time before you fully see the benefits.

Trying to sort her sleep out should be a priority, lack of sleep can lead to more emotional issues and doesnt help healing. Maybe check out some sleep threads here and try to get some more ideas of things she could try for sleep. Things like a completely dark room to sleep in.. can be very important in those with this illness. We also may be sensitive to things like trying to sleep with the electric blanket on due to EMF (electromagnetic frequencies) etc.

I still suffer from "suicidal exhaustion" on rare occassions (but commonly when I was extremely sick). Its like when Im very exhausted, it pulls my whole body including my emotions down. As the others have said.. make sure she isnt in a push-crash cycle.. when she's able to do things she needs to be very aware of her pacing and how much she is doing. Sometimes it too can be things like pain pulling one emotionally down (in which case her doctor needs to be treating her pain better) but suicidal exhaustion I found to be a different thing entirely.

Be aware too how you are affecting her. When I was very sick and bedridden long term.. just someone talking to me would have major reconcussions on me and help to keep me terribly unwell. I had to be in silence and a dark room for months. Make sure you arent trying to hold convos with her which are too long etc etc. Things like TV on in the background can also "frazzel" our minds when we are too sick and noise intollerent if she is suffering from that. There may be a lot of things she isnt telling you as she dont wish to impact you too much.

My advice to her is rest, rest, rest.. and when the intense exhaustion passes.. maybe so will the suicidal feels. (If she is too sick I dont suggest councilling.. I tried that when I was too sick and all it did is taxed my body more.. and I couldnt even absorb the things being said to me as I was far too tired so counselling while I was in that state and suicidal, was quite useless).

I wish her the best.

ps some of us have found the sleep aid, Doxylamine Succinate which is also an anti histamine to be good for sleep. It can be brought over the counter.. she could trial it from a very small amount eg quarter of a pill used to work for me. Being an anti histamine.. she may tollerate it better then some of the other things she's tried.
Many of us who have severe sleep issues will need to take several different meds for sleep (the above med was one of a mix of things I used to take for sleep.. I used to cycle my sleep meds to stop tollerance from buidling up).

 

[merylg]

Low doses of B2 (Riboflavin) spread through the day, have helped me with sleep onset & muscle relaxation overnight. I never realised my muscles were NOT relaxing overnight before I took this.
The B2 (Riboflavin) has also helped elevate my mood (without the need for antidepressants, which I cannot tolerate - I experienced bad side effects and am treatment resistant).
Finding ways to deal with any physical pain is important.

 

[Esmeralda]

Thanks for all encouragment. My wife has been ill for five years, but it has gotten much worse the last year and a half. I think our main strategy at the moment is ART. She does have quite a lot of problems with pain (headaches) which we try to deal with but its not easy since she doesnt tolerate painkillers very well. I do believe good sleep is a key to her getting better. She has gotten a new pill to take against anxiety called Atarax (hydroxyzine). It is also supposed to help her sleep. Hopefully we can get her sleep back in order with that and all of your tips

 

[caledonia]

Fish oil should help with both pain and mood. Make sure to get pharmaceutical grade (or at least molecular distilled) due to pollution in fish. I've had significant reduction in headaches and PMS with fish oil. I use the liquid version of OmegaRx brand and take 1-1/2 tsp per day.

 

[Dreambirdie]

Whenever my adrenals become overly stressed and exhausted, I begin to slide into depression and anxiety symptoms. What has helped me most during these times is keeping myself in as restful of a place, both physically and emotionally, as I possibly can.

Resting the body is usually easier than resting the mind, which can becomes REST-LESS and even fearful during these kind of setbacks. I use acupuncture and self-hypnosis (in the form of active fantasizing/daydreaming) to help myself deal with and alleviate some of that restlessness. Because I have MCS in addition to CFS, I can't take pharma drugs, so acupuncture is a life saver. And active engagement of my mind in pleasant fantasies really helps a lot as well. Being outdoors in nature, even just in my yard watching the trees and clouds and birds can be very soothing. Doing rhythmic breathing can help too. Anything that feeds the peace inside is good during times like this.

As far as supplements and treatments... that is so very individual, that I would not even know what ideas to begin to share with you. It sounds like you need to find a well rounded healthcare practitioner, who would be willing to do some house calls, and help you get some ideas on how to proceed. I wish you well with that.

 

[Nielk]

One thing that caught my eye is the fact that you state that your wife has been given Benzo medications and that she is sensitive to meds. I think it's important to point out that it is possible for certain people to become depressed and suicidal from benzo medications. Did her depression start before introducing these meds? Benzos in general are tricky meds to beon and especially to get off of when needed.
The best to your wife. I hope this gets resolved soon for her.