Depression/CFS

[Snoozermcsleepsalot]

Have you ever been evaluated for Upper Airway Resistance Syndrome? I know you said you’ve had several sleep studies, but apparently not all sleep labs check for this.
Some info:
http://www.potsuk.org/stories/58
https://www.academia.edu/12170930/A..._Findings_in_Upper_Airway_Resistance_Syndrome
https://www.forbes.com/sites/melani...nown-health-condition-that-steals-your-sleep/

If you have a history of teeth grinding, sleep walking/talking, have had teeth pulled due to overcrowding (meaning you have a smaller than average jaw), tmj pain, hypotension or orthostatic intolerance, and are thinner or more petite than average, you may very well have some degree of airway resistance that may be preventing you from getting deep sleep. There are some inexpensive things you can try:
-10mg Loratadine before bed to help clear nasal passages.
- tongue retaining device (can be found for under $4 on Amazon) which keeps your tongue from falling back and obstructing your airway.
-try a different sleep position: http://www.uarsrelief.com/sleeppositions.html

 

[soxfan]

I had to cancel my appointment with the counselor because she isn’t in my network and I would have to pay out of pocket $300 a visit.
I had to reschedule with an in network MD who is also a therapist but can’t get in till June...

It’s fine because I can’t take medication anyway so it actually won’t make difference if it’s depression fatigue.

 

[Mary]

Hi @soxfan - something came to me the other day. I could be wrong here, but I don't think depression per se causes real physical fatigue. I think if someone is depressed, they may not feel like exercising, but if they force themselves to do it, they are physically capable of doing it. And generally will feel better if they do push themselves to exercise.

However, someone with ME/CFS is the opposite. They generally want very badly to be able to do things and live their lives, but physically they are incapable of doing this. And if they force themselves to exercise, they feel worse.

I think this is one way of helping to figure out what's going on. I think doctors way too often throw around the word "depression" when they don't know what's going on. TBH, I'm surprised I'm not more depressed given my real physical limitations due to ME/CFS. I do think the 5-htp helps. Also, stay on top of your omega 3's - low omega 3's are linked to depression.

 

[Mary]

One more thing - all your blood work being normal would match many if not most of us. ME/CFS generally does not show up blood tests. So "normal" blood work means very little in terms of ME/CFS.

I can't remember, you may have talked about this before, but have ever had something like Nutreval testing done? It's a lot more comprehensive than blood tests.

Also, normal or high results on B12 blood tests can be deceiving. It doesn't tell us how much is actually being used by the cells - e.g., my B12 is always very high on blood tests because I take a lot of it - but I have to take a lot for it to make any difference, to actually be able to use some of it. My former doctor (unfortunately deceased) used to do a hair analysis every year and my cobalamin was always almost undetectable, despite B12 injections etc. It wasn't until I started taking liquid methylcobalamin, 5000 mcg. sublingually 2 x a day - that I finally was able to feel a difference from taking B12.

 

[Shoshana]

It's good to see your update, @soxfan I have thought of you.

In addition, i think that you had said that you sometimes feel better, while walking, so I wonder if trying out,
some schedule of short walks, might help you to feel more stable and help with relaxation or mental state, or with sleep or something else.

 

[BeADocToGoTo1]

Whilst you are waiting for your appointment, here are two books to consider:

Primal Body, Primal Mind
Rituals of Healing: Using Imagery for Health and Wellness

 

[soxfan]

@Mary ...I am certain I was labeled with depression is because of the questionnaire I answered in the doctor office. I was a 16 and she said someone not depressed is a 6.
I am just trying to figure out this fatigue. The reason being is that I don’t have any of the major CFS symptoms.
Sure I have awful sleep but that happened when I got Lyme disease.

I do feel that fatigue from depression would be different from what I feel. My fatigue feels mostly mental like in my brain...it gets exhausted easily. I rarely feel physical fatigue in my body.

I quit my B12 but am going to go back on it .
My doctor had told me to stay on but because the level was so high I quit.

It could be that I simply have idiopathic chronic fatigue...maybe from Lyme...maybe some from
Depression.. I see the Psychiatrist in June and I suppose it’s her job to figure out if I have depression or not.

I probably could use some counseling to help me cope since I am totally unable to accept that this could be how the rest of my life will be. I need to get family to understand better why I can’t participate in everything all the time .

Yes I am sad often but it’s because I can’t do what I want and live in an uncomfortable fatigue state every single day...I also have spells of tears but I am not sure which came first...fatigue or depression.

Because I am chronically tired no matter what...even if I do nothing is also extremely frustrating. I dunno...I really don’t like to complain when I know I am better off than many. I am really just trying to relieve some of the tiredness if possible.
Sorry this is so long ....sometimes I ramble.

 

[soxfan]

@Mary ...PS Yes I have had the NutraEval testing done...

 

[Mary]

My fatigue feels mostly mental like in my brain...it gets exhausted easily. I rarely feel physical fatigue in my body.

I think Hip is similar - I believe he gets PEM from mental exertion and not physical (as I recall). Constant fatigue would make anyone sad or depressed. I know mentally I feel much better on days when I have some energy.

You might do a post asking about what has helped others with mental fatigue (and I would ask Hip too), and I would definitely stick with the B12. My numbers were very high but it meant next to nothing - I wasn't able to utilize it until I was taking quite a high dose.

I don't think you have to accept that this is how the rest of your life will be. I keep looking for answers. If I just think, well, this is it, there's no hope, I would get very depressed. But I just keep looking and reading, because I do believe there have to be answers for us. And I have found some things that have helped me, and most of them I found on my own without a doctor's help. Most doctors can do very little for us. There are some rare ones who are able to help, so I'm not saying don't go see a doctor, but I would not rely on them.

 

[soxfan]

@Mary ...That is my problem...I honestly feel there is no hope and I will feel like this for the rest of my life. I have been searching for answers and things that help for over 14 years and I can say I have found nothing to help with the fatigue. I know how to prevent myself from becoming crashed or horizontal for days. But there is nothing I have ever taken that has helped. I even recently tried CBD oil and had no results at all.
It was quite expensive too.

I totally agree about the doctors except I believe I could benefit from some therapy. If I go on with the doom and gloom over how I am feeling and hopeless then I am afraid of doing something to myself. As You might remember I was seeing a functional medicine doctor...spent tons of money and got nothing from it except some valuable testing.
When she lost interest in me she let me go and wouldn’t let me sign back up with her. So yeah I am really really down on doctors at the moment.

It’s more my mental state I am concerned with..although I can’t take anti depressants at all...horrible side effects.

I am going to get some B12 tomorrow at Whole Foods as they sell the good ones and start up on that again.

I don’t just get PEM from mental exertion...I have mental tiredness/exhaustion all the time. That is how my fatigue presents itself. Within a couple hours of getting up in the morning it hits me...sometimes I can do an errand and sometimes I can’t leave the house.
Overdoing just makes it more intense. I will write a post about it tomorrow and see what others do or take to help with it.
Thanks Mary

 

[Shoshana]

I read and understand what you are saying, in your posts, @soxfan

It is definitely difficult to keep hoping.... but we will keep hoping, with you or for you, that something will change for you, at some point, and we hope it isn't too far away.

Perhaps try to accept it is this way for now, but that it could change in the future.
I just mostly wanted to say hello to you, and let you know, I am thinking of you, too.

 

[soxfan]

@Shoshana ....Thanks for the nice post. I truly understand what you are saying. I know there are so many others here who have much worse symptoms than me and I actually feel guilty complaining about mine.

I have been dealing with this for so long now and I don’t understand it. I don’t really fit into the CFS description because I don’t have the required symptoms yet when I read this forum especially the fatigue and sleep forums I can totally relate.

I have had doctors tell me I have CFS and others say it’s depression/anxiety but I don’t think it can just be depression fatigue...it’s too intense and changes everyday. I would think if I was depressed it would be more constant in intensity daily.

Anyway...I really won’t know the answer till June...

 

[Mary]

Hi @soxfan, I agree, a good counselor should be able to help you deal with everything. I hope other members who have similar issues with mental fatigue can help you!

 

[Rufous McKinney]

I probably could use some counseling to help me cope since I am totally unable to accept that this could be how the rest of my life will be.

Most of us benefit from contact and input and a little dialogue with others, so getting some counseling assistance seems like a good idea for just about everyone. I am telling this to myself also. Not good at: finding this help.

Getting that type of support complements our other efforts.

At the same time, I get exhausted just imagining telling the story that lives in my head, which is the story of this, and its ongoing nature and overwhelming incapacitations. If I have an appointment with anyone health related, the internal dialogue and endless narrative take over. I wish there was a knob I could turn that off. (yes, I meditate,some)

It would be wonderful if we could readily find support for this type of illness such that the care giver ALREADY understands it, and can work with our specific Needs and Limitations.

Please know we care and share these challenges.

 

[Rufous McKinney]

I have mental tiredness/exhaustion all the time.

At this current moment, tired all the time is whats going on around here. Just breathing, pumping blood and overseeing Autonomic Nerves...seems to have utilized most available energy units.

So: I do hope to reach the bench outside, because its pretty and sunny and birds are nearby and I know its good for me to be outside a little. So thats one thing I can do to be a little less depressed about all this.

 

[Float]

HI there !! Do you identify as being a super busy person previously ? Someone always on the go , can't relax or highly strung ? If yes then as part of your treatment , a psychologist could be useful to help you uncover why you could never relax much or had to always be busy. Busy sounds harmless and productive but there can be something driving the restlessness.
I'm writing this hypothetically as you have not suggested anything like this.
Chronic illness and the practical affects cam.trigger complex ptsd in some. It's not easy to deal with. And for that alone I recommend having a health psychologist if possible , whether there was before ME trauma or not.
There are other things besides meds for instance st Johns wort.
Vegetables. Sunshine. Friends. Community participation. If you are able to.then fulfilling work or voluntary work. Music. Learning.
IMO counsellors aren't much help nor are social workers or nurses qualified in talk therapy. ....but psychologists and psychotherapists are more helpful due to the nature of where they can go with you.
CBT is a useful tool for life, I imagine it's what a behavioural therapist uses ? So I would take this as its a great thing to know throughout life, whether it helps the situation now or not.
Go well! Anything is worth a go but keep asking for other avenues if you are unsatisfied.
Meds like prozac help some but not all. My friend said they stopped negative thoughts instantly for her ! I'm like you. ..I tried one or two pills of several types over the years but had such nasty side effects decide I would rather be in emotional distress and feel like me rather than have the oddest sense of self I have ever encountered. Very weird side effects.

 

[soxfan]

@Float ...Before we moved to NC five years ago I was working part time. My boss was very understanding and always made a schedule that I could handle. So no I wasn’t always a on the go person...well I was way long ago when raising my boys but they are all grown with families.
Before illness I think most of us were busy...I know I miss the times my husband and I could just on the spur of the moment take off for the weekend and not even give it a second thought.

But no I wasn’t a person that couldn’t relax or always had to be going...

Now I am terrified of making plans or attending things I know will be difficult. For example my son is getting married in July...I have to attend the rehearsal dinner and then the following day a late afternoon wedding and reception. I am honestly freaking out on how I am going to handle all this activity without crashing mid way through.

I have to start with a psychologist first as I have to play by my insurance companies rules. After the appointment with her she can guide me as to what I can do next. I am certain she has no experience with CFS but it’s where I have to start.
I tried Prozac a month ago given to me by my PCP and had severe gastro problems within four days. Years ago I tried Celexa and Ummm I can’t remember but I felt like I was in outer space.
I did have an appointment with a behavioral therapist but she wasn’t in my network and would have had to pay out of pocket so I cancelled.

It’s crazy here how long you have to wait for appointments...I mean if someone is moderately depressed as they say I am and then make you wait over two months to see someone is ridiculous. That is really one thing that aggravates me about living here.

 

[soxfan]

@Rufous McKinney ....Yes agreed ...I am also exhausted thinking about telling my long story to the psychiatrist as I know she won’t understand it. Even I don’t understand it.
I have a couple friends here who have chronic illness’s but they both can do way more than I can so it’s hard for them to understand why I can’t especially when I look perfectly normal and healthy.
I haven’t been able to participate in much at the community I live in because of the chronic tiredness which keeps me somewhat isolated. I live in a beautiful community so am able to get out and walk most days as nature and the sounds of the birds is very calming to me.

It’s the social activity that fries my brain. I can handle a couple people but not a group. So my social interaction is limited. I have no problems physically...I can walk...bike...hike..but it’s the mental engagement that destroys me.

Thanks for posting...I am trying to keep myself from totally crumbling before the appointment in June...

 

[BeADocToGoTo1]

@Rufous McKinney ....Yes agreed ...I am also exhausted thinking about telling my long story to the psychiatrist as I know she won’t understand it. Even I don’t understand it.
I have a couple friends here who have chronic illness’s but they both can do way more than I can so it’s hard for them to understand why I can’t especially when I look perfectly normal and healthy.
I haven’t been able to participate in much at the community I live in because of the chronic tiredness which keeps me somewhat isolated. I live in a beautiful community so am able to get out and walk most days as nature and the sounds of the birds is very calming to me.

It’s the social activity that fries my brain. I can handle a couple people but not a group. So my social interaction is limited. I have no problems physically...I can walk...bike...hike..but it’s the mental engagement that destroys me.

Thanks for posting...I am trying to keep myself from totally crumbling before the appointment in June...

I completely understand the social activity vs. solo activity in nature. Please do not feel bad about that. The fact that you are able to do so and get some form of enjoyment out of it is huge! Some people get their batteries charged with social interaction and some get them drained with social interaction. I am like you in the latter camp. I think the amount of information overload, self-pressures, expectations, and social pressures we get in the modern society is unnatural and part of this constant bombardment causing fatigue and sensory overload. Do not underestimate the digital social pressure and how much of a drain that can be. This forum is about the only social media interaction I do to avoid this energy drain, and avoid all the whatsapp/facebook/instagrams, etc. blackholes.

Also the lack of truly understanding how you are feeling even from close friends and family is normal and something that took me a while to accept. It is not meant maliciously or that they do not care, it is just plain human nature. Until someone experiences something similar they do not really know. Your world becomes much smaller, and this loss of your former life can cause much grief, fatigue, etc. As Float mentioned it can be a form of PTSD as you truly have been going through something traumatic and life altering.

For the therapist or psychiatrist you can write down the story so you do not have to go over it all (again) during the initial meeting. I did this because it was less fatiguing, less frustrating and because I did not want to forget important bits during the talk. I have done the same for any doctor's appointment for the same reason. It takes a little of the stress out of it.

And another thought on the fatigue and depression as I do not think there are set rules. Depression can fatigue you, fatigue can depress you, it can swing wildly intra-day and inter-day. The thoughts of 'what is the point' and 'is this as good as it gets' are normal, but this is where the mindfullness and focusing on the little enjoyments in the now are key.

Have you heard of Plum Village or Thich Nhat Hanh? They might have a location close to you where it is all about trying to find mental peace, mindfullness, walking meditations, not having to do anything but be amongst nature, no pressures, no expectations, etc.

https://plumvillage.org/about/international-sangha-directory/

 

[Rufous McKinney]

I think the amount of information overload, self-pressures, expectations, and social pressures we get in the modern society is unnatural and part of this constant bombardment causing fatigue and sensory overload.

Great advice! Very insightful!! For me, mental and emotional activity related to socializing are immensely draining. Two hours is about it: and even if I don't talk much, I will get like laryngitis, my throat is really in pain and I sound awful.

My voice, and inability to look outward from my two eyeballs: constitute major physical symptoms in my opinion.

Most of the time, I sound sick. So now I don't make phone calls much/ plus no land line anymore. The cell phone does just do something immediately to my brain and I want to toss it away.