Suicidal exhaustion - how to deal with it

[Esmeralda]

Yes she did get benzos from her doctor. she has not been able to take them due to side effects. She tried a fraction of one pill and did get very problematic headaches. We have been warned against benzos as well so that was maybe for the best. The doctors alternative was atarax wich is supposed to be a "kinder" medicine

 

[SOC]

I'm wondering if your wife might be more fibromyalgia than ME, in which case pegabalin (Lyrica) might be something to ask her doctor about. It's supposedly helpful for both pain and generalized anxiety. Now that it comes in a liquid form she could start at a very low dose to see if she tolerates it.

Cymbalta can also be helpful with both ME/CFS pain and depression. Her doctor might know if this could be of some help to her.

 

[Wayne]

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.

Hi Esmeralda,

I would have to guess that most everyone who has any degree of ME/CFS has dealt with suicidal thoughts and/or tendencies at some point or another. So your story and queries certainly resonate with many here. I noticed most of the replies seem to revolve around physical approaches, and I'm not sure if you were looking for replies beyond that. But I thought I would at least mention that the most helpful tool I've found to "reset" myself, both spiritually and psychologically, is by incorporating an ancient spiritual mantra (Singing HU) into my daily life. The link will take you to a 3 1/2 minute video which explains more about it. If this is something that would be in line with your wife's own orientation, perhaps it could ease some of the "suicidal exhaustion" you describe.

All the Best, Wayne

 

[CJB]

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.

I missed your asking for those with similar experiences.

I found myself in this situation after a year of being as sick as I had ever been (flu-like onset) and seeing test after test come back negative. I had no idea how to pace and was in a constant push/crash cycle and spiralling downward. I hadn't had a decent sleep for a year. I was fighting for benefits and receiving notices for command appearances before attorneys, their "specialists" and trying to keep up with my friends, family, etc.

My thinking about suicide had always been that it was a selfish act. But when it hit, my thinking was "if my loved ones had any idea how much I was suffering, they could not hold it against me." Something had to be done - I just couldn't continue with the combination of physical pain, exhaustion, misunderstanding by docs and the benefits system.

I had a plan and started to execute the plan, but needed so much rest that I had a lot of time to think about the details. The one issue I couldn't resolve was what to do with my little Yorkie. She was only 2 years old at that time and there was no way I could take her and no way I could leave her behind.

So, it took so long to implement the plan that my husband came home, discovered what I was trying to do and got me in to the doc. He talked me into taking 300 mg of doxepin for sleep. Up until then I had rejected pharmaceuticals, but by then I was seriously suicidal and I agreed just so they would leave me alone so I could finish the job. He also prescribed Zoloft.

Guess what? The doxepin worked. I slept and woke up still sick, but not wanting to die any more. It was that dramatic. The Zoloft was horrible for me, so that only lasted a couple of days, but I ended up taking doxepin for about 15 years. It didn't give me perfect sleep, but I had no side effects and it worked almost always.

It's really hard to lose the ability to "do". Some personality types will feel bad for taking up oxygen if they can't accomplish something in the world. Do their jobs. Take care of the people they love. So we struggle with the idea of "being" and what that means. Christopher Reeve wrote a great book on that subject.

I know meditation may seem impossible to her now, but a simple "checking in" for a couple of minutes in the morning and evening is a start. No goal - nothing to accomplish - just checking in with her interior. Her mood, physical sensations, sensitivity to noise, touch, etc. There's been a lot of research around meditation and it works, but it needs to be a regular practice and she's in no shape to start now. But checking in allows you to see the improvements even when they're very small and that's encouraging. I tried Wayne's Hu meditation and it is beautiful and soothing. That would work. The idea is to just notice how she is and not judge.

I guess I would agree with everyone else who has said to focus on sleep. Sleep and digestion seem to be the two biggies where we can make improvements that lead to a better quality of life while we wait for a cure. That and pacing. Pacing is key. ART works.

Mostly what she has going for her is you. Please take care of yourself. I was both caregiver and receiver during my 35 year marriage and I have to tell you it is far easier to be the sick one than the caregiver. Take advantage of whatever support you are offered and continue to reach out.

 

[taniaaust1]

http://drmyhill.co.uk/wiki/Sleep_is_vital_for_good_health_-_especially_in_CFS

Dr Sarah Myhill (English ME specialist) has some good sleep advice at her site

 

[Esmeralda]

I heard that ME sufferers has a lot of lactic acid in their bodies and that this also effects the brain where it causes anxiety attacks. I guess this is part of the explanation for the exhaustion as well. Anyone else have any knowledge about this? Is there a way to counter act lactic acid in the body?

 

[Sallysblooms]

Do you take L Carnitine?

 

[Valentijn]

Someone mentioned fish oil, and that really does make a huge difference if it's a constant pressure headache. The long-chain omega 3 fatty acids (EPA and DHA) reduce inflammation. It can take a day or so to start working, but I just take a couple pills every day and the headache stays away unless I skip a dose or two.

There are almost certainly mitochondrial issues in ME/CFS, and it's possible that having protein frequently might help, to keep the body from trying to break down muscles as a fuel source. I also agree that aggressive rest therapy is a great place to start. It might help to stay laying down as much as possible, in case Orthostatic Intolerance is contributing.

MethylB12 can be pretty rough in regards to potassium depletion, but HydroxyB12 doesn't seem to create the same problem. It has to get converted before the body can use it, so it stays under control. I use sublingual "Recovery Power Vitamine B12" from bloem.net (suggested by my ME doctor), and it helps quite a bit, without the potassium issues.

Another thing that might be contributing to low mood is depleted neurotransmitters. I've got very low serotonin and norepinephrine, which could cause mood issues in addition to contributing to problems with Orthostatic Intolerance and ATP production.

 

[Ocean]

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.

Good point, Neilk. I had depression problems with ambien which is a benzo-like med. So I agree about taking a look at benzos as a possible culprit.

 

[Esmeralda]

Do you take L Carnitine?

Yes, she tried that but it was too tough on her stomach. She's very sensitive to all sorts of things

 

[Adster]

Sorry to hear of the difficult situation there, sounds like she is really doing it tough. For sleep you might like to investigate Melatonin, I think it is well tolerated if you get the dose right. It is available over the counter in some countries and as a prescription med in others. Tryptophan and 5 HTP are other options worth investigating too.

Hope things get better soon.

 

[taniaaust1]

Sorry to hear of the difficult situation there, sounds like she is really doing it tough. For sleep you might like to investigate Melatonin, I think it is well tolerated if you get the dose right .

Melatonin can be an issue for those who have POTS due to the ME. A study has found it makes POTS worst. (I thou do have POTS and in my case it doesnt seem to affect the POTS and it does help me with sleep).