Depression/CFS

soxfan

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I have been away from the forum for a while now. I was going through a really rough time and needed to take some time away. During that time I had been seeing a Functional Medicine Doctor. She did a lot of valuable testing which showed I am truly very healthy. She had me on some supplements but none of them made a difference. Because my main problem is Chronic tiredness she decided to have me do a depression questionnaire. Well I came up with moderately depressed.
I tried explaining that this was caused by the fact that my fatigue limits me greatly and I live everyday in a fatigue haze. She had me do a genetic test to see which anti depressants would work best. Once the test came back she decided she didn’t want to treat me and told me I should go see a neurolinguistic doctor. Well I had to google it to find out what they were.

I decided to go see my PCP and see what she had to say. She also gave me the depression test and it came up again moderately depressed. She wanted me to try Prozac which I agreed but I ended up with horrible side effects almost immediately. She then put me on Wellbutrin with the same issue...awful side effects. So now she wants me to see a Behavioral Therapist.

So my question is has any one seen either one of these doctors and did it help. I am truly certain this illness has caused the depression and I do agree I am depressed even though my only real symptom is tiredness when I read the symptoms of depression.

At this point I will try anything instead of medications because I need to feel better emotionally and don’t want to go back to a very dark place I was recently in.

I recently quit Lunesta (one of the hardest things I have ever done) and no longer take anything to sleep even though my sleep is horrible. Doctor won’t give me Klonopin anymore to sleep so I have nothing.

Sorry this is so long but I need to get myself in a better place to be able to cope with this illness and my limitations. I would like to do it without medication since I am so extremely sensitive to them.
Anybody have any luck with a counselor...therapist etc...

Thanks for reading ....
 

BeADocToGoTo1

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Hi soxfan,

Sorry you are going through this. I had to tackle fatigue, emotional numbness, depression, suicidal thoughts in a two-pronged approach.

1. Physical - In my case, the most important cause of these symptoms by far. I had to stop any insults to the body I had control over and supply the body with the necessary nutrients. I was not breaking down and absorbing food properly (EPI, SIBO, Candida, etc.) so needed extra help. Nutrient imbalances and microbiome imbalances have a tremendous impact on these symptoms. Have you had any nutritional type of tests done, such as Genova FMV or Great Plains OAT? Have you tested for Candida overgrowth or SIBO? Also take a hard and honest look at the quality of your food, water, beverage intake. I always thought I lived cleanly and ate healthily, but it turns out that I (and my doctors) had to learn a lot. SSRIs were a no go for me as well and they are more to attack symptoms, not root causes. Amino acid therapy, vitamins and minerals were a much better solution in my case, so that my body could have the building blocks to produce enough neurotransmitters. Many people, including psychiatrists, are not familar nor aware of amino acid therapy, and how metabolic pathways effect neurotransmitters and subsequent mood swings, depression, apathy, etc.

2. Mental - Using e.g. meditation, visualization techniques, therapist sessions, relaxation techniques, yoga, etc. the stress of illness itself, both physically and emotionally can also cause an extra demand on neurotransmitters, and thus deplete them more quickly than normal.
 

nanonug

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She wanted me to try Prozac which I agreed but I ended up with horrible side effects almost immediately. She then put me on Wellbutrin with the same issue...awful side effects.
It is quite normal to have these awful side effects for the first couple of weeks, and sometimes even longer. In any case, it is always best to see a psychiatrist than a general practitioner. I take Effexor XR and Wellbutrin XL and both do wonders for my problem with anhedonia.
 

Shoshana

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I don't know what to answer or suggest, to you, @soxfan :confused:

but I wanted to say hello to you, and that I was happy to see that you had posted, :thumbsup:
after having not seen you for a long while.
(Which is totally fine for you to have whatever breaks you decide, I am just trying to say welcome! :rolleyes: :) )

I truly don't know what might help you, as not having the other boxes checked on the depression questionnaire, makes it not sound like depression to me, but I wouldn't diagnose anyone , of course!

I do encourage you to keep trying things that you ARE comfortable with trying. I hope you find something that helps you, soon!


Have you looked at the older threads with lists of suggestions for sleep?
 

Mary

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Hi @soxfan - I've wondered how you were. doing - I'm sorry to hear you're having a rough time! :depressed: Have you ever tried 5-htp? It's an amino acid which helps the body produce serotonin. I started taking it about 15 years ago and it started helping with sleep right away. I take 100 to 150 mg. before bed. The first week I took it, it gave me a moderate headache but that went away after a week and after that I was fine with it. It may help my mood as well as sleep.

Tryptophan can also be effective for sleep, though I wouldn't take both 5-htp and tryptophan.

Also - how are your omega 3's? Low omega 3's can contribute to depression, and also low vitamin D can cause it as well. But of course this illness all by itself can bring us down.

I can't tolerate prescription anti-depressants. Many of us here can't.

Other things I take for sleep at night are niacin (sensitizes GABA receptors), melatonin, l-theanine, lemon balm. valerian root, and magnolia bark from Bulk Supplements.

Things that have helped me with fatigue are branched chain amino acids, B1, methylfolate, methylcobalamin, B6 (P-5-P), d-ribose, potassium.

Welcome back - I hope you get some answers here! :)
 

Hufsamor

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Both my brother (Also with me/cfs) and I have had a few sessions with a behavioural therapist some years ago. We where both happy with it. The therapist tried to help the patient to change focus, to see the good thing in life sharper and to accept the grieving. To use the energy more wisely, as negative thoughts steals amounts of energy.

To me, he really didn't bring any new thoughts. It was mostly things and techniques I already tried to use. But yet, to get help from a therapist made it easier to use those techniques, like a football player trying to practice on his own, comparing to what he does with a clever coach.
My brother was even more pleased, I don't think he was as familiar to the way of thinking as I was.
(We had two different therapists, but where both really happy with them)

But the therapist need to be familiar with me/ cfs. I have heard about therapists who are eager to get the me / cfs patients to push their physical limits, like they would with someone with "only" depression. So it's difficult to give any advice. If you find a clever therapist, can afford it, and are able to do the sessions, yes, definitely, go for it!
 

soxfan

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Hi all and thank you for all your thoughts and suggestions. I have an 90 minute appointment with a Behavioral therapist in order to try and determine if I actually have depression and or anxiety. I have had a lot gone on in my life the past six years which I could write a whole chapter on . Then a month later I have an appointment with a medication specialist to determine if I actually would benefit from them .
Because of my sensitivity to them I am thinking not.

This is something I have never tried before so I am truly excited to talk with someone. I have no idea if they are familiar with CFS but will find out. Here in NC it takes months to get appointments and I only got the one next week due to a cancellation.

If some of my chronic tiredness is due to depression or anxiety then hopefully they will be able to determine that. I already practice meditation....relaxation meditation...heart math...etc but my body never feels calm inside so most of he time it’s of no use.

The only time I really feel calm is when I am out walking ....it is peaceful and calming to me .

I really need this help because I was at the point of thinking self harm (not suicide).
I honestly don’t know why I have this awful tiredness everyday all day but I hope for some answers.

I didn’t want to stay on the A/Ds because they were prescribed by my PCP because of the depression questionnaire...She told me a 6 would be a non depressed person and my score was a 16.

Thank you all for welcoming me back..@ Mary...I am sorry I suddenly disappeared. I was unable to really function for a while and needed some time. I have some HTP but am going to wait till after I see the counselor to start anything ...

I will find out on Tuesday if she will be of any help and will post then...
 

soxfan

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@Shoshana ...I can say I have written many posts on the sleep forum looking for help. But if I truly have moderate depression then nothing I take will give me a refreshing sleep until that is addressed. I wake up all the time with my heart palps (acute awareness of heartbeat...not fast or pounding.) which is the major thing that interferes with my ability to fall asleep. I feel I have true anxiety as well...
 

Shoshana

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@soxfan, it was very good to read your comments and updates, here on this thread.

@Mary 's suggestion of trying either 5-htp, or tryptophan, caused me to remember they had helped me , in the past.

That seems very, very good, that you managed to get those appointments, :thumbsup:
and that you want to try those people.
I hope that they will come up with some ideas that help you!
Keep us posted, if/when you are able. I will be hoping that you find some good path forward.

And IF those 2 people do not turn out a good match for you, then, remember that you can keep looking, for someone else to help you, or for some other idea that might.
Those are just 2 individuals. VERY worth it, to try them! But IF they dont pan out for you, it would feel disappointing for sure, but they are not the only ones .
 

BeADocToGoTo1

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Just in case it helps, I am copying info from a few posts from other threads.

Of course there can be many reasons. But, here is some food for thought as an underlying physical cause of low neurotransmitters, which in my case was nutrient deficiencies due to malabsorption, which in turn was due to exocrine pancreatic insufficiency EPI, SIBO, and Candida overgrowth.

There are many cofactors and nutrients needed for the body to produce neurotransmitters, so you could check whether you are deficient in any of the following:

  • Tyrosine. An amino acid needed to produce dopamine, which in turn is needed to produce norepinephrine.
  • Phenylalanine. An essential amino acid needed to produce tyrosine. It cannot be produced by animals and must come from food.
  • Tryptophan. An essential amino acid needed to produce serotonin, which in turn is used to produce melatonin. It cannot be produced by animals and must come from food.
  • Choline is a precursor for the neurotransmitter acetylcholine, and impacts tyrosine related neurotransmitters like dopamine and norepinephrine.
  • Tetrahydrobiopterin (BH4) is a cofactor for the enzymes responsible for the production of monoamine neurotransmitters (epinephrine, norepinephrine, DOPA, serotonin). BH4 requires tryptophan, vitamin B6 and zinc cofactors in sufficient levels.
  • Issues with transforming dopamine into norepinephrine, could indicate vitamin C or copper deficiencies
  • Microbiome imbalance can also influence levels. Clostridia bacteria, for example, can inhibit the transfer of dopamine to norepinephrine.
More background details are in this thread:

https://forums.phoenixrising.me/thr...y-epi-and-chronic-fatigue-syndrome-cfs.62997/
 

BeADocToGoTo1

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The only time I really feel calm is when I am out walking ....it is peaceful and calming to me .
Buddhists and many others call this walking meditation, and it is a perfectly good way to meditate !!

Regarding your overall energy level and depression you mentioned the functional doctor performing a lot of tests. I have to ask, but were the following or similar types of tests completed?

1. Genova Diagnostics - FMV - Gives a great overall picture of nutrient deficiencies, neurotransmitter metabolites, microbiome dysbiosis, pancreatic enzyme issues, and many more. Biochemistry and metabolomics in practice. This test should be standard for all primary care and family practice doctors as a regular preventative maintenance test, and for anything chronic or hard to diagnose. Great Plains Laboratories has similar tests.

2. Genova Diagnostics - Comprehensive Digestive Stool Analysis 2.0 with Parasitology (microbiome dysbiosis indicators), Fecal Fat Distribution (checks if you have issues with different types of fat intake and digestion), Elastase (for EPI, pancreas enzyme marker)and Chymotrypsin (for EPI, pancreas enzyme marker). Doctor's Data has similar tests.

3. Small intestinal bacterial overgrowth (SIBO) breath test, for example, Commonwealth Diagnostics International. But the first one will also provide you with SIBO indicators.

But also look at HbA1c as a quick, standard indicator of excess sugar intake which impacts your microbiome, pancreas functioning amongst many other things. 5.2% or lower is what I strive for.
 

soxfan

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@BeADocToGoTo1 - I had the comprehensive stool test from Genova and everything was great. She actually said my gut was one of the healthiest she had ever seen.
She did a saliva test for hormones and cortisol....everything was fine there too.

I had the genetic test for which drugs would work best and which ones wouldn’t since she had thought about putting me on an anti depressant.

I didn’t have leaky gut or anything wrong inside there...everything was normal. I also had a breath test for bacterial overgrowth since I had years of Lyme treatment.

To me she was quite thorough in what needed to be tested. My fatigue is very strange in that some days it’s mental and I feel horrible tiredness behind my eyes and some days it’s just a pure tiredness. It changes almost on a daily basis.

I recently had my AC1 done and it’s perfect. Like I said I am so healthy except for the constant fatigue and very poor sleep...I wake up tired every morning. I slog through each day struggling with fatigue. I don’t nap because it isn’t a need to sleep.

I thank you for all your suggestions...I have a binder of all the tests she did in the past 10 months.

It’s time now to look in another direction in case depression is aggravating the fatigue or the fatigue caused the depression. That’s the million dollar question !

I like the “walking meditation”
 

Hip

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I tried explaining that this was caused by the fact that my fatigue limits me greatly and I live everyday in a fatigue haze.
I think those life limiting circumstances can play a role, but I suspect that when ME/CFS patients do experience depression (and I am one of them), it's more due to the adverse biological effect this disease causes in the brain. If for example you have a chronic viral infection in your brain, as studies indicate is the case in ME/CFS, that sort of thing may well physically cause depression, anxiety, and other mental symptoms.

One of the things I found quite helpful for depression is Spanish saffron. One systematic review found this to be as effective as standard pharmaceutical drugs. But watch out for fake saffron.


For anxiety, this might be of interest:
Completely eliminated my severe anxiety symptoms with three supplements!
 
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soxfan

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@MTpockets ....I have had them all checked. I have been taking Vitamin D for 10 years and Vitamin B12 for about 5. Everything else is in the high normal range. I did manage tor raise both D and B12 immensely and really don’t need them anymore but continue on them so I don’t go backwards. I seriously have a binder of testing I have had done.

My problem with falling asleep is he continuous abnormal awareness of my heart beating. My mind focuses on the beats and then it becomes annoying and disturbed the calming that you should have when trying to sleep. I have tried everything to get my mind off the beating with no success yet.
 

BeADocToGoTo1

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Hi soxfan,

A few more thoughts. Just tell me if I should stop. :)
  • How is your sleep hygiene? Have you checked the area where you sleep for noise, air quality, high EMF, LED or other sources of lights, temperature, etc.? No food a few hours before bed, no electronic screen blue light a while before, no tv watching in the bed, etc.
  • Your body might also have become used to expecting sleeping pills and it might just take a while for the body to readjust.
  • Taking vitamin D when you do not need it has recently been shown to cause issues. Perhaps see whether there are other supplements you are taking unnecessarily.
  • Have you tried a hot Epsom salt bath before bed for calming, meditation effect and magnesium?
  • Have you had your thyroid properly checked, which would include all six of these: free T4, free T3, reverse T3, TPOAb and TgAb antibodies (to exclude Hashimoto autoimmune), and TSH?
  • What about food and beverage intake? Have you taken a close look at timing, quality, etc.?
  • Do you feel your heart flipflopping, skipping beats as well, or is it just more present and noticable. Have you tried CoQ10 for the heart? Whenever my heart now is more 'present' or I start skipping beats here and there it is a signal from my body that I need to add some more CoQ10.
 

soxfan

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A few more thoughts. Just tell me if I should stop.
  • How is your sleep hygiene? Have you checked the area where you sleep for noise, air quality, high EMF, LED or other sources of lights, temperature, etc.? No food a few hours before bed, no electronic screen blue light a while before, no tv watching in the bed, etc.
  • Your body might also have become used to expecting sleeping pills and it might just take a while for the body to readjust.
  • Taking vitamin D when you do not need it has recently been shown to cause issues. Perhaps see whether there are other supplements you are taking unnecessarily.
  • Have you tried a hot Epsom salt bath before bed for calming, meditation effect and magnesium?
  • Have you had your thyroid properly checked, which would include all six of these: free T4, free T3, reverse T3, TPOAb and TgAb antibodies (to exclude Hashimoto autoimmune), and TSH?
  • What about food and beverage intake? Have you taken a close look at timing, quality, etc.?
  • Do you feel your heart flipflopping, skipping beats as well, or is it just more present and noticable. Have you tried CoQ10 for the heart? Whenever my heart now is more 'present' or I start skipping beats here and there it is a signal from my body that I need to add some more CoQ10.
[/QUOTE]
@BeADocToGoTo1 - I have been dealing with this fatigue for well over ten years. Poor sleep since Lyme in 2004. I have tried everything you suggested. I am on thyroid medication since 2006 and have all those tests yearly.

As for the heart beat problem..it is just an abnormal awareness as it feels like a pendulum swinging back and forth. It’s is very annoying and keeps me from feeling calm at bedtime.

Done the epsom salt thing (lavender scent) taken magnesium....listen to meditation of all types.

The fatigue changes daily...it doesn’t always feel the same. My sleep is never the same either. Some nights okay and others wake all night.
I have been off Lunesta since December 14 2018 and Klonopin since June 2018.

I am not sure anyone will ever know why I have this fatigue or what can be done to help me live a more comfortable life.

Our bedroom has black out shades ...no lights from any source ...quiet at night except for the owls or frogs which I enjoy.

The problem talking to doctors about the fatigue is that it feel different on any given day. Some days behind my eyes are very fatigued...sometimes it a sleepines all day ...some days mental exhaustion....etc. Anyone would feel depressed dealing with this for years and years.

My sleep is not restful ( had several sleep studies) unrefreshing...fractured and just plain lousy.

I totally appreciate all your suggestions and I don’t mind reading them...
 

BeADocToGoTo1

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Truly frustrating that nothing has helped you. I can only imagine the horrible impact Lyme has had.

Ok, a few more thoughts.

The sleep issues remind me of what my wife goes through when her thyroid medication is out of alignment. She had it really bad when on Synthroid, but it improved a lot on Armour. But even then, she sometimes has to adjust the dosage up or down due to symptoms. There are a few people here that are far more experienced with the thyroid, and every situation is of course going to be a little different.

Have you tried a period of complete reset on supplements? I will stop all supplements for a few weeks to see/feel the results, and only slowly reintroduce those that I know have an effect for me (like CoQ10 on my heart...heart rhythm issues would keep me from sleeping properly for a long time).

Do you keep a detailed and honest food, beverage and supplement tracker/diary? These can obviously have a tremendous amount of impact on sleep patterns, depression and mood. Even timing can have a big impact. Ever read up on the Primal lifestyle?

Have you tried adding a bit more healthy protein or amino acid supplements to your diet?

In addition to the amino acid points from earlier, here is another factor to keep in mind:

Melatonin is a hormone which is synthesized from tryptophan (amino acid). It is key in your sleep-wake cycle, by helping you fall and stay asleep. It follows the same metabolic pathway as serotonin, and thus needs vitamins B6, B9, B12, copper, zinc, and magnesium. Any deficiencies in those can also cause sleep disruptions.

The counselor action is worth trying as well. Try to find someone with personal experience of chronic illness as they seem to understand the struggle a bit better. And, do not in the slightest feel like you have to stick it out with someone. If it does not click in the first couple of sessions, move on.
 
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soxfan

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@BeADocToGoTo1 -I appreciate all your suggestions. I have my thyroid checked twice a year and an ultrasound every other. I take Levothyroxine but have tried NP Thyroid Andrew it didn’t make a difference.
I hardly take any supplements now. I was taking quite a few in the past year that the Functional Medicine doctor had me doing.
She also had me eating certain foods in case some were causing inflammation.
I eat very well....coffee is my worse vice but I only drink two cups in the morning.

I feel like my body is an alien...it never feels right. I feel like adrenaline is constantly flowing.
What I really want to find out from the counselor/therapist is if I truly am depressed or the constant fatigue is just CFS. So many doctors have told me different things and I just want to know what a specialist opinion is rather than what my PCP says.

Since I really can’t tolerate anti depressants it I guess doesn’t matter since I can’t take them and would have to try and resolve it other ways.
I take melatonin every night 1mg.

My sleep is junk....I never feel well rested. I will post on Tuesday after the appointment.
 
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What I really want to find out from the counselor/therapist is if I truly am depressed or the constant fatigue is just CFS. So many doctors have told me different things and I just want to know what a specialist opinion is rather than what my PCP says.
this article seemed reasonably informative....:

https://www.psychiatryadvisor.com/h...c-encephalomyelitis-chronic-fatigue-syndrome/

At the bookstore I got a book the therapist recommended for me (Anxiety, Panic disorder) they are very good and comprehensive type books: with a chapter on just about everything. They have one for depression.....(they don't have that same book for ME/CFS pretty sure). probably worth getting just to look at and get some good ideas.