Depression/CFS

[soxfan]

@BeADocToGoTo1 ...Thank You for the great advice. I think I am going to start by typing on my IPad and print it out. For me it’s much easier than writing it down. It is a 60 minute appointment so I will be totally fried by the time it is over. My head will be spinning and I expect to crash when I get home.

I know some people have no issues with social interactions and some like me have no issues with physical activity but each is debilitating in its own way.
I am extremely lucky to have a 100 percent understanding husband. He was there with me through the years of Lyme treatment and supported me totally.

I realize no one can understand what we deal with everyday and I don’t expect them to really but I wish they would try and understand that when I can’t do something I really can’t even though I would love to.
For me waking unrefreshed and already fatigued by 10am is seriously like a living torture...
Again I know there are so many worse things I could be dealing with and I don’t want to be a complainer...but life is passing by ....it’s really sad.

I do think because I am able to be physically active when the fatigue isn’t debilitating makes it harder for me personally to stay home and do nothing ...I have a hard time sitting still and I can’t read for long or use computer for too long.

There is a place in Asheville that we went to a few years ago which was like a retreat where you could stay and either join in the yoga...meditation...or walking trails. It was in the woods..very peaceful. Maybe some week we should head out there for a stay.

 

[Rufous McKinney]

I realize no one can understand what we deal with everyday and I don’t expect them to really but I wish they would try and understand that when I can’t do something I really can’t even though I would love to.
For me waking unrefreshed and already fatigued by 10am is seriously like a living torture...

Its the darndest thing, upon awakening, and a few moments in, the exhaustion tsunami. Briefly, there was a window of expectation. Often and mostly, that window rapidly forecloses. It was an illusion.

I have a little energy today, accumulated from many days of not going out (exertion all forms). Husband wants help going to the laundramat. So I helped. But it was NOT where I wanted to be on this pretty day, sitting parked in a car in an alley washing boring clothes. I start becoming comatose again. Its too bright, I"m covering my face with my hands on a beautiful day.

Mostly I don't discuss my situation with others because I"m not around any others; and they aren't interested. Occassionally I lapse. I forget I am supposed to keep all this to myself. Then you face: the strange responses that leave you perplexed.

Its my understanding that people are interested in the tale: How did you Overcome That obstacle.

so: once I figure out how to Overcome this: I'll report back to Planet Earth and see if anybody else is still around.

 

[Rufous McKinney]

I do think because I am able to be physically active when the fatigue isn’t debilitating makes it harder for me personally to stay home and do nothing ...I have a hard time sitting still and I can’t read for long or use computer for too long.

I think you tension is quite understandable.

When you have a bit more physical energy, it is actually harder to deal with the mental and emotional fatigue. I notice I get in more of a funk on the days I have more physical energy. I still welcome: MORE TO ARRIVE. But it gets challenging quickly.

 

[soxfan]

Okay...so a few days ago I messaged my former Lyme doctor in N.H.. I told him that I had been diagnosed with depression and actually didn’t feel that was a proper diagnosis. I had some of my old records but not all. I asked if anywhere in his notes he had written depression...( he was my doctor for 10 years).

I told him what symptoms I still struggle with and if back then I was mentioning them to him or what if anything did he write in my notes.
So I actually spoke with a nurse and when she mentioned this I totally remembered.

I had complained about overstimulation....chronic tiredness....noise sensitivity...riding in the car for long periods is exhausting (moving traffic and scenery) ...shopping or socialize with a group of people...computer use...television...and very sensitive to medications.
He had diagnosed me back then with HSP which some of you might know is Highly Sensitive Person(People).

He had prescribed low doses of Klonopin before activities that cause the overstimulation in order to stop the overload. I remember now that I used it for,that purpose and it did work but I stopped for a while ...then I started it up at night when I quit Lunesta.

I have spent some time on the IPad this morning reading as much as I could handle about this and boy does it sound like me. I know sensory overload is a CFS symptom as well but at least now I have something to tell the doctor in June and maybe she can recommend a therapist that can help me manage ....

Anyway just a thought as reading about HSP was eye opening.

 

[Rufous McKinney]

Anyway just a thought as reading about HSP was eye opening.

I've been theorizing on that HSP component for a while now. I think there are HSP folks who have more sensitive wiring, more intense processing, more energetic cost. And there is nothing wrong.

But then the illness exacerbates these tendencies and so we have a harder time managing the situation.

So everything above you described happens to me. I went for a drive when I was in a crash, and could not process the visual inputs, the input overload. At that particularly bad moment, I felt the mitochondria were simply exhausted and could generate: nothing at all.

Congrats on getting this background on yourself pulled together so you can better think about your situation.

 

[soxfan]

@Rufous McKinney ...I just can’t except the diagnosis of Depression. I don’t behave like I am depressed at all. Plus the fact that I can’t tolerate anti depressants anyway so even if I theoretically was I can’t treat with medications.

I am not sure how I remembered my Lyme doctor telling me how he diagnosis depression and he told me back then I wasn’t. Then this morning I started reading how HSP can cause depression and anxiety because of what was in my office notes. Boom..a lightbulb went on. I read for far too long but it all made sense.

I have said from day one the fatigue is in my head...not my physical body. Plus I use to tell my doc who was wonderful by the way...how I had an abnormal awareness of my heat beat..which was annoying and constant. He told me I was very sensitive and overly aware of my body. Again it makes sense as this is still one of my prominent symptoms. I am fairly certain I was always like this but having Lyme made it much worse.

I am not sure this is the majority of my illness but at least I can talk with the doctor about it and have some information to share.

Yeah car trips are brutal. I am seriously thinking about wearing an eye mask when we drive up to New England this summer. The traffic and landscape flying by actually makes my head feel like it’s gonna explode.

We all have to advocate for ourselves so I am going to keep plugging along. I thought living in NC and having doctors from Duke would be a plus but they all have been very disappointing...from the Intergrative doc to the Endocrinologist...all of them disappointments.

 

[Rufous McKinney]

I just can’t except the diagnosis of Depression. I don’t behave like I am depressed at all. Plus the fact that I can’t tolerate anti depressants anyway so even if I theoretically was I can’t treat with medications.

Cannot tolerate anti-depressants here either. Thats all the doctors I saw for 30 years wanted to do.

I can handle being down now and then: because i can also get rather Joyful and those pills take that joyful away and is JUST NOT worth it. The side effects I experienced were horrendous and arose in the Dark of Night, me asleep (in theory)...awakening to: a NIGHTMARE without ELMSTREET.

Yet I also know we have chemistry, and chemistry can benefit from adjustments.

The traffic and landscape flying by actually makes my head feel like it’s gonna explode

This is how the trip to see my own new Grandaugthter got cancelled (postponed).

 

[Rufous McKinney]

He told me I was very sensitive and overly aware of my body. Again it makes sense as this is still one of my prominent symptoms. I am fairly certain I was always like this but having Lyme made it much worse.

It does not sound like you have depression instead it sounds more like your dealing with inflammatory issues which trigger many of these symptoms. Bodies can do really strange things, and this triggers many odd, strange, and sometimes symptoms which come and go and therefore become hard to understand and explain. So we are In a Body, yet supposed to somehow not let any of those things affect us.

So we work on it, see it for what it is, be kind to yourself. Alot of psychological work and personal internal work seems to be required to : ride this wave with Grace.

 

[soxfan]

@Rufous McKinney ...I was seeing a functional medicine doctor for a year. She had me on an elimination diet to figure out if any foods were causing the fatigue. After months nothing had changed but that doesn’t mean something else isn’t causing inflammation.

I agree I don’t have depression...yes I do feel down on days and sometimes guilty and worthless but it’s not everyday...only on those days I feel really bad. I think that’s normal for anyone with a chronic illness.

Have you ever tried Buspar? It’s apparently a mild anti anxiety...not in the benzo class. My doctor suggested I might want to try a very low dose since I have such bad side effects...never have I on benzodiazepines though. I did some reading on it and might give it a try. I do have bouts of anxiety now and then. I am figuring why not?

She was not pleased I have to wait two months to see the psychiatrist but also didn’t offer to get me in sooner.

Yup I feel as though I am in an alien body and very difficult to explain how I feel...

 

[Rufous McKinney]

Have you ever tried Buspar?

No I have not...never heard of it actually. Will check it out. I do use benzo's myself at quite low dosages.....like sometimes I might take 0.12 mg during the daytime.....I take 0.25 mg to help me sleep. My sleep was seriously disrupted...now its: better, but deep sleep and repairs is still compromised.

there are some general anxiety tips here in PR: for instance one of Hip's links goes to three things that helped him reduce anxiety. I just started trying N-Acetyl glucosamine....

I take numerous herbs (chinese traditional)...which always include things to calm me down. Yet I am forever greeted with: Oh, your so anxious. Sometimes its irritating as i wasn't anxious until YOU Keep commenting...(my herbalist) (whom I know well, seen for a long time).

In ME: they have found considerable inflammation in the lower brain stem and upper spinal cord. Everything is squeezed. THey' found more heat in the brain (its hotter). Not enough oxygen, too much Lactate. Hotter= more rapid chemical reactions. Sometimes around here folks talk about: Wired but tired. You feel rather amped, restless, but yet hard to relax and truely rest. Its Part Of this swirl.

 

[soxfan]

@Rufous McKinney ...I took 0.25 mg Klonopin to sleep for five years. It worked great and I was actually able to keep working part time. I can’t say my sleep was refreshing but I could function.
I would still be on it but my PCP told me because of my age she wouldn’t give it to me much longer and switched me to Lunesta. Then that stopped working and I had nothing. I tried all kinds of Chinese herbals but had no luck. I tried CBD oil with no luck . I tried Skullcap and Passion Flower for months. I was so hoping they would help.

I think sleep is the main culprit in how I feel and causes me anxiety when I sleep particularly poorly. I actually sleep quite well but it’s not refreshing and I usually wake tired and un-rested. I dream a lot and remember them but I don’t think I get quality sleep.

I saw Dr.Komaroff in Boston 7 years ago. He did a bunch of blood testing but nothing else. He said I didn’t qualify as CFS because I didn’t have enough symptoms but said in his opinion it’s what I had if that makes sense. I saw him a couple other times but he really had nothing to offer and did no other testing at all.

I don’t feel I need to be on a constant anti anxiety as I don’t feel it everyday. I am not sure what I am going to do. I really want to hold off till June.

I am just gonna keep plugging along and read as much as I can ...get outside and walk and try to live each day to the best of my ability.

 

[Rufous McKinney]

I think sleep is the main culprit in how I feel and causes me anxiety when I sleep particularly poorly[/QUOte

The Not sleeping well, for me started around menopause when the hormones drop, plus a bunch of excessive work stress: and I had to travel and Did not sleep one night, for the whole night. I was horribly ill, and having to go to meetings and be in airplanes. Panic attacks start. They don't make sense. I don't understand what this is. That goes on for maybe five more years. The body got worse and worse.

Not sleeping well makes me immediately ill: so ill got MUCH worse during this era.

So now, I've eliminated most of the outer appearance of stress. I have no more lists to think about at 3 am. So I'm able to sleep, but its light and not refreshing, repairs aren't happening, blood sugar a mess.

So do hang in there, I'm also trying hard to just: be relaxed about the situation, not flailing.

 

[soxfan]

@Rufous McKinney ....YES...My sleep became horrible during menopause and the even worse with Lyme. Coincidentally I got Lyme a year before my periods became irregular.
Oh gosh I use to have the best sleep ...I would lay down and be out within minutes and sleep a full nine hours. How I long for that again.

My sleep has been off the charts horrible since 2004. I have taken all kinds of thing s to fall asleep but like you said...it’s never refreshing or restoring. Some nights I wake only once but still wake feeling horribly tired.

I honestly have no stress that should keep me awake. I don’t work anymore...I have a great life . It’s the constant awareness of my heart beating is the worse culprit. If I didn’t have that going on I think I could fall asleep. I almost feel like going to a hypnotist to see if he can help me with it.

Lately I have been taking Neurontin at night only 200 mg to help with my chronic nerve pain but ultimately I end up taking small dose of benzo and that will put me out.

There have been very few things that will actually knock me out...I have tried probably over 20 meds/herbals. Of course the sleep studies show nothing abnormal.

Not sleeping well or waking every couple hours will incapacitate me the following day. It affects me much worse than it ever use to or how a normal person would feel.

I say again sleep is a huge culprit for me and if I could sleep well I would feel oh so much better....

 

[Hope4]

...
I had complained about overstimulation....chronic tiredness....noise sensitivity...riding in the car for long periods is exhausting (moving traffic and scenery) ...shopping or socialize with a group of people...computer use...television...and very sensitive to medications.
...
I know sensory overload is a CFS symptom as well ....

Hi @soxfan Did that doctor ask you about extra-sensitivity in all the senses? Multi-sensory hypersensitivity is common in many forms of ailments. A toxicologist I am acquainted with believes that many people with multi-sensory hypersensitivity have carbon monoxide build up in their tissues.

I know several people with chemical poisoning (commonly called MCS) that are very, very sensitive in all senses.

And having other health problems, or any other challenging situation, causes more stress, which exacerbates the hypersensitivity.

I am smiling healing thoughts to you.

 

[Rufous McKinney]

I almost feel like going to a hypnotist to see if he can help me with it.

This might be something that hypnosis could help with, I know I"ve considered it for IBS triggers. IBS exists regardless but definitely exacerbates due to the Gut having its own opinions.

It might just help you reduce the intensity of what your feeling.

Have you heard of Emotional Freedom Technique?(aka: tapping, you tap points on the body and it helps release blockages). Another tool that might help. Alot of info online. Its also a somewhat useful: displacement activity.

Hang in there.

 

[soxfan]

@Hope4 ...I have several sensitivity issues. They include noise...bright lights in stores..medications...so specifically I can’t go to the movies...malls...noisy restaurants...be around a large group of people...socializing etc. computer and television are also rough for me. Riding in the car ( long trips). Even hanging out and playing with my five year old granddaughter exhausts me.

I can do all this but I feel like my brain is gonna explode and I get extremely tired and exhausted...mentally. This all happened after Lyme so I blame that.

I have no problems with foods...smells...

 

[Rufous McKinney]

I can do all this but I feel like my brain is gonna explode

It does sound like you have your particular and unique version.....Decades ago: and not during what I would call feeling Chronically Ill: I could not understand why everyone is enjoying this screaming loud restaurant I cannot STAND THIS. I had a horrible time. Everybody else proclaimed they could hardly wait to return.

I now have a grandaughter and I know I will have to limit time and take lots of breaks. I'll have her read to me!

I recall being wiped out when I spent a few hours with my brother's twins. I held one for like 5 minutes and then was supposed to play longer.

Jody talked about White Space in a recent essay here in PR. I need to create more white space, to rest the brain, here.

 

[Hope4]

@soxfan. I wish I knew how to solve the challenges. I avoid the things you do. Best wishes to you for healing.

 

[soxfan]

@Rufous McKinney ....I am considering going to a sleep specialist but I have to get through the appointment in June first. I went to one a long time ago and he tried to give me a medication they give to Alzheimer’s patients. I don’t remember the name. I had the prescription filled but never took it and never went back,

I am not sure what they could do for me except another sleep study ( in which I hardly sleep) or prescribe more pills.

I need more brain resting too...I just have to focus on what is good or bad for me and make sure I implement it. I definitely over do when it comes to my granddaughter but she knows sometimes grammie needs a break to go and lay down...then my husband takes over.

I will have to try and find that essay and check it out...

 

[percyval577]

@soxfan
I too am from a Lyme subgroup, I must have got some borrelia when I was a little child (I remember that), but I got uncomfortable ill when I was 30 from EBV.

Borrelia contain huge amounts of manganese (Aguirre et al 2013, cf Posey and Gheradini 2000). The first game changer for me (since 2015) was an avoidance of high manganese food, and since then I sleep well enough, not already very very well though. My pain still vanishes slowly.
There is a pathway in the brain: Mn + Arg + LPS = Nitric Oxide (eg Filipov et al 2005). I think that this pathway has become out of tune. I like to reason that the manganese component exists for an adjustment to the live-important arginase enzyme in the liver, which does show as well Mn + Arg.

Maybe it´s worth try. The need for manganese is not high, but it must be said that some of the few tasks are important. Manganese competes with iron for the same transporter. Milk facilitates manganese resorption.

If you try it, would you leaf me a message? Two or three other members couldn´t confirm the success (one of them from a EBV subgroup).

All the best.


Edits: The improvement was also difficult. As result from my trials of the last year the second major influence seems to be - and it does not feel as if would stop to work - citrate acid in lemons (chelating metals) and vitB12, and chocolate (intake of metals) and vitB12. I think nerve actions will take place where these metals are.
Chocolate contains oxal-acid, a chelator for manganese, so there is no manganese uptake from chocolate, at least not from milk chocolate in my experience. When I began my diet I made some mistakes, eg I got horrible reactions from green tea.