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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Depression

Messages
54
I know that talking about depression and CFS/ME can be a touchy subject, because for so long so many of us were incorrectly and frustratingly told that what we had was not CFS but depression (and many "experts" still insist on it).

But some of us do have both, and dealing with the isolation and inability to engage in life that CFS/ME imposes on us can make depression that much harder to deal with. For me, at the moment, depression is taking a bigger toll than the crushing fatigue of CFS/ME.

I recently had a depressive episode, and it wasn't that I felt sad, but that I was struggling to get through every moment of the day, like I was in severe pain -- though it wasn't physical pain, other than the usual aches of FM -- and I couldn't find relief from it anywhere. I felt like I was hanging on by my fingernails, and I couldn't tolerate any small setback, like a disagreement with my bf or even something stupid like a leaky drain that I tried to fix under the bathroom sink, and I just lost it every time, just started sobbing and yelling like it was the end of the world. I could see myself overreacting, but I had no reserves to cope with even the smallest thing.

I think part of it was that I had started taking Lyrica, which I later learned has the potential side effect of causing mood disturbances and even thoughts of suicide. All SSRI antidepressants have that effect on me as well, so I don't know of any medication I can take for depression. I think my sensitivity to meds has to do with my CFS/ME.

I also can't go out and have fun, or even do something engaging at home, like a creative project, which I think could help ease the depression, because I'm too tired.

I'm wondering if others here have been dealing with depression and if anyone has found some relief?
 

Hysterical Woman

Senior Member
Messages
857
Location
East Coast
Hi Bee,

Having doctors diagnose us with depression as the primary cause of our illness is absurd. I was lucky enough to have a primary care doctor who did not do that. I was also lucky in my life to have never suffered from depression before I became ill with CFS. As I have posted on many other threads, magnesium glycinate has made several of my CFS symptoms a lot better, and that includes the depression/sadness that comes with any long term chronic illness. Yeah, I know, I am the magnesium maniac, but I can't help it since it has made my day to day life so much better. Does it "cure" CFS? I only wish that were true, but I do have a better quality of life where I can research other treatment possibilities and keep up with the XMRV news.

Good Luck bee,

HW
 

Lesley

Senior Member
Messages
188
Location
Southeastern US
Bee,

I'm sorry to hear about your difficulties. Sometimes people who can't tolerate SSRIs are helped by Wellbutrin. It is also sometimes prescribed for fatigue and orthostatic intolerance. You may need a fraction of the normal dose.

Best of luck finding something that helps.

Lesley
 

julius

Watchoo lookin' at?
Messages
785
Location
Canada
Bee,

If anyone criticizes you here for bringing this up, I will be here defending you tooth and nail.

Pharmaceutical antidepressants have been proven, time and again, to be no better than a placebo.

http://content.nejm.org/cgi/content/abstract/358/3/252

and this extract in Wikipedia 'Antidepressants', from a Washington Post article.

A May 7, 2002 article in The Washington Post titled "Against Depression, a Sugar Pill Is Hard to Beat" stated, "A new analysis has found that in the majority of trials conducted by drug companies in recent decades, sugar pills have done as well asor better thanantidepressants. Companies have had to conduct numerous trials to get two that show a positive result, which is the Food and Drug Administration's minimum for approval. What's more, the sugar pills, or placebos, cause profound changes in the same areas of the brain affected by the medicines, according to research published last week... the makers of Prozac had to run five trials to obtain two that were positive, and the makers of Paxil and Zoloft had to run even more... When Leuchter compared the brain changes in patients on placebos, he was amazed to find that many of them had changes in the same parts of the brain that are thought to control important facets of mood... Once the trial was over and the patients who had been given placebos were told as much, they quickly deteriorated. People's belief in the power of antidepressants may explain why they do well on placebos..."

There was a long discussion about this on this thread, http://forums.aboutmecfs.org/showth...rers-dont-miss-this-A-really-good-study/page4

I don't think there was any strong argument against this position, but you can read it and decide for yourself.
 
Messages
36
Hi Bee,

I also have had depression consequential to CFS. I had CFS for 20 years before I ever had a depressive episode.

I have to agree with you - in my view depression is far worse than the other symptoms I have. Because when are you depressed, nothing is of any value and nothing is enjoyable. It's not sadness, though it has some similarities. It's a completely different order of magnitude.

Both times I've been depressed, I found it cleared up after a few months. The first time I just took St John's Wort and the second time I took an SSRI (lexapro). I have no idea if either of these actually worked or if the depression just went away over time.

I think that this natural tendency for depression to be a transient episode for most people is what confuses the studies of various antidepressants. It's certainly true that placebo appears to be about as effective as antidepressants for mild to medium cases. But SSRIs are still effective for severe depression. Personally, I think SSRIs are mildly to moderately effective but probably vastly over-prescribed because most cases of depression are likely to be transient anyway.

I second the suggestions above to try magnesium - I think it helped me to sleep and relax which is super important for getting over a depressive episode. If you are having sleep issues, I think trying to address those is very important too since sleep is clearly linked to mood. I've also found melatonin to be very helpful for sleep as well as Clonazepam.

I also suggest *forcing* yourself to do something that you would theoretically find interesting and constructive. I say "theoretically" because I know that nothing seems interesting or useful when you are depressed. But if you can make yourself do something, sometimes it clicks and you find yourself actually enjoying it. You sort of need to pull yourself up by your bootstraps. I know this is insanely hard when you have CFS as well. Perhaps you can something online that doesn't require physical activity? Writing? Studying online?

The other thing I think is worth mentioning is that there are a ton of other drugs that you can try if you turn out to have treatment resistant depression. MAOIs and TCAs are still considered to be effective and it can sometimes be a matter of just rotating through different drugs until you find one that works. Don't give up, there are lots of things to try!
 
Messages
39
Location
South Florida
I also suffered a pretty bad depressive episode after CFS came back into my life after what I would call 10 years of remission. I had been able to work full time and more as a CPA in public accounting and more than keep up with my wife and kids during my "remission" When I had my relapse, feeling that sick and not being able to do the things I wanted to do again was beyond frightening. Luckily, a year and a half later, I am substantially improved (not recovered, but who is?)

To Hysterical woman... I agree 100% that CFS is not depression. I have high titers to epstein barr and HHV-6, low natural killer cell activity and endocrine dysfunction However, we are very much predisposed to depression given our abnormal sleep patters, elevated cytokines, etc. There are various statistics out there that between 40-60% of people with CFS have some form of depression at one point during their illness. I am a full believer that when depression occurs in CFS, there is a physiological basis and is a secondary disorder to CFS. Unfortunately, it is stil a very real problem when it happens and was without question the worst period in my life. I would also say that if you are on medication that seems to be a causative factor or is making you worse, try something else. Physcologists know absolutely nothing about how to treat you... putting you on an antidepressant may be necessary depending on how severe the depressive episode is, but there is currently no way to determine which neurotransmitter in your brain is dysfunctional and which drug will be effective for you.
 

Tammie

Senior Member
Messages
793
Location
Woodridge, IL
hey, just wanted to say I can relate.....CFS has most deinfitely made me depressed; at times severly so......and I, too, cannot tkae antidepressants - not only do I have horrible side effects but i actually become far more depressed on them.....I have tried a ton of them in the past, and the only excpetion to this was welbutrin - however, it was NOT a good exception - it made me manic and I do not have bipolar disorder, have never experienced anything like that prior to or after going off it

I do take magnesium, too, and though I have no doubt it is beneficial for many thigns, it has never made any difference in my depression.....actually the only supplement that made a difference as fara s depression goes was fish oil, and I can no longer take that either (it won't stay down)

not really sure what to suggest....I even have a degree in cousneling, but most all the thigns I learned that would help are not possible to put into practice when one is so physically sick, but i wanted you to know that you are definitely not alone in feeling this way
 

Carrigon

Senior Member
Messages
808
Location
PA, USA
I think it's very hard to have this disease and not become depressed because of the disease. You can't be happy if you cannot participate in life. I struggle with it every day and I'm pretty much half suicidal after nineteen years of it. I'm finding that it's harder and harder to come up with reasons why I should stay. I can't join anything, I can't take a class, I can't commit to anything, can't volunteer, can't work, can't keep up a friendship. And in fact, I seem to be the only one trying to keep up the few people I call. They no longer call me. The only time I speak with anyone is if I do the calling. Doesn't exactly make me feel wanted.

I think feeling depressed because of all of this is normal. It would be pretty sick to be happy that you have no life.

I don't believe in antidepressants. I let an idiot doc, my uncle the hematologist, talk me into taking one when I first got sick. It literally made me suicidal. All I thought about for the month I was on it was ways to kill myself. When I stopped it, within twenty four hours, all thoughts and fantasies of suicide went away. I swore right there I would never let anyone give me an antidepressant again. They can work the opposite and make you commit suicide. And there have been plenty of people who killed themselves on those drugs, including Lyrica, that's why they now have to put that in the commercials.

There are no easy answers. I'm very miserable from it. I'm sick of watching everyone around me go out and have a life and I can't have one. I'm tired of being in pain every day and having all kinds of new symptoms all the time. I'm tired of getting no answers from doctors. I'm just tired of all of it. I have no family to live for. There is nothing keeping me here but my cat. So I have been living for this one cat. And if something happens to the cat, I don't know. It's not good. There is no "therapy" or shrink that can help me. Can they give me back my health, my life, even half a life? No. What possible reason can they come up with for me to want to stay here? There is none. No family, no real friends, no career, no nothing. And my money is gone cause I can't work. So basically, I spend every day now asking God why I'm in this situation, what I'm supposed to do about it, and if you won't let me even have half a life, than what am I doing here. Questions without answers.
 

Hysterical Woman

Senior Member
Messages
857
Location
East Coast
Hi Bee,

Having doctors diagnose us with depression is absurd.

SNIP

Hi Guys,

Just wanted to clarify this, I am going to edit my original post since I worded it so poorly. I didn't mean that doctors shouldn't recognize that we might have serious depression issues secondary to our underlying CFS problem. Nor did I mean that patients shouldn't treat their depression with whatever works for them. My original comment was commenting on the frustration I feel at seeing fellow patients having to deal with depression listed as their primary diagnosis. Hope that makes sense.

Take care,

Maxine
 
Messages
54
Thank you for all your kind replies.

I have tried many antidepressants in the past. Most of them (mainly SSRIs) made me more depressed, in the same stark and sudden way that Tammie and Carrigon described, including St. John's Wort. Wellbutrin just made me feel uncomfortably strange, like I was on drugs and had had too much coffee. Tricyclic antidepressants just made me tired, which is all I need with the CFS!

I did have an unexpected and partly beneficial reaction to Risperdal and Zyprexa, which are antipsychotics. I am not psychotic, but my doc was running out of ideas. Even though they are in a class of drugs that used to be called "major tranquilizers" and are supposed to subdue any manic or agitated feelings that one might be having, they had the opposite effect on me. Risperdal made me crazy-happy, but almost verging on mania (even though I have never been bipolar), which was good in a way but a bit much, a bit scary. I took it for about two months and then the effcect just faded away. Zyprexa I only took for a week because it was just too weird, too close to mania. I also was helped a lot by Lorazepam, which I only took in emergencies, when I felt like I was having a meltdown, but because it's a controlled substance and I don't have a close relationship with a doctor I see regularly, I haven't found anyone willing to prescribe it in over 12 years.

All of these experiences make me think two things, and I mention all this in case it might be helpful to others and also for any thoughts anyone might have, since people here are so knowledgeable:

One, I think that my sensitivity to meds (which seems to be common in pwc) could mean that the meds might work like they are supposed to if I were to try a dose that is much smaller than the normal dose, as Lesley mentioned as well.

And two, the fact that I was not helpd by antidepressants but was helped by anti-anxiety meds could mean that what is causing my depression has a lot to do with anxiety, and maybe those are the meds I need to focus on. Usually docs will say, well, if you're already dead tired why do you need sth to calm you down? Yet the inability to sleep is a major issue, and so is te stress and anxiety of being cooped up in the house!

I appreciate all the suggestions. I will try magnesium, which I have but only take now and then rather than regularly. And jonc I agree that trying to do something even if it doesn't seem worth the trouble is important, and I do have to do that more.

Carrigon, I'm sorry that you are struggling so much. You are not alone. Many of us understand what you are going through. I hope you keep hanging in there and try to find the things that can lift you up a bit, even if it's just listening to music or even watching TV shows that you enjoy.
 

Carrigon

Senior Member
Messages
808
Location
PA, USA
bee33, thanks :) I used to use an herbal combo for anxiety. Hops/Valerian/Skullcap. It helps. Never got me to sleep, but it did make me alot calmer.

I'm just at the point of having to trust in God and believe there's a plan somewhere. It's just really hard. And blind faith is what all our religious beliefs are about regardless of the religion we believe in. But it's really hard and really scary, especially when you see your money go further down cause you can't work and there doesn't seem to be an out at all. And there are no answers as to why we are so sick and can't have a life. There has to be a reason for it somewhere.
 
Messages
39
Location
South Florida
HW....There is no question that the first "diagnosis" that most physicians make is depression. The hallmark symptoms of CFS are fatigue, headache, insomnia, malaise, muscle pain which overlap substantially with depression. Typical blood tests are generally normal. When I first got sick about 13 years ago, I went from doctor to doctor (primariy care, endocrinologist, rheumatologist)... none of them could figure anything definitive out and after a while, they start to look at you like you are crazy and start talking about the antidepressants. It was not until a family friend got me in to to see Dr. Klimas and she ran a blood volume study, immune profiles and a tilt table test that my diagnosis was made. I was basically down close to two quarts of blood (low blood volume) at the time and had some pretty high titers to infectious agents.

I think my story is typical of almost everyone with CFS (and I am a man... not to be sexist, but I would imagine it is even worse for woman to be taken seriously by some of these "I am god" male doctors).

Carrigon, please do your best to hang in there... I know much easier said than done. There are absolutely no easy answers and when I was depressed with my second go-around of CFS, I spent a great deal of time asking myself some of the same questions. The problem is that depression does not allow you to think clearly and absolutely makes the symptoms of our illness 100% worse. I had some of the same experiences with anti-depressants... I spent eight months on Cymbalta and felt horrible and at times suicidal. As soon as I changed over to Lexapro, my depression went away.... I have not had a depressive thought in over a year and am on a pretty low dose which I now take every couple of days. Medication can and does work and while I am also not a big believer in popping pills, I have come to the conclusion that until someone comes up with a cure for CFS, we need to use everything in the toolbox that helps us.
 
Messages
36
Bee33 - I guess you probably already know that anxiety is commonly associated with depression so I don't think it would be at all surprising for anxiolytic or anti-psychotic drugs to be helpful. For example, Clonazepam is something that several CFS doctors have recommended, not for its use as an anti-psychotic, but instead to reduce excessive neural excitation. I think this Cheney article has been posted elsewhere on these boards before:

http://www.prohealth.com/library/showarticle.cfm?id=3154&t=CFIDS_FM

I've personally also had both anxiety and depression. What it *felt* like to me was that my chronic fatigue caused the anxiety and then the anxiety and fatigue together led to depression. Let's face it, when you are fatigued, anxious and suffering from all the other chronic fatigue symptoms, what's not to be depressed about? :Retro smile:

Maybe try some anxiolytic drugs rather than pure anti-depressents? If you're finding prescription medication too strong, have you tried any of the milder anxiety supplements/herbal cures like Kava Kava, L-Theanine, Picamilon, etc?
 

Victoria

Senior Member
Messages
1,377
Location
Melbourne, Australia
I wonder whether Aromatherapy & essential oils might be uplifting for you bee33.

They are not anti-depressant per se, but I do know many that are mood uplifters. You might also like to try Bach Rescue Remedy. There's a Blog of mine on Bach Flower Remedies written early last year. Not my best effort in writing, but I was a "Blog Beginner" at the time.

If you'd like to know more about Aromatherapy (as opposed to prescription drugs), send me a PM with your email address & I'll forward you some information as an attachment. The article I wrote on Aromatherapy is about 6 pages long & explains the therapy, some suggested essential oils & some methods of use.

Cort started a thread after he had a very positive reaction from some samples I sent him. All he did was sniff the piece of paper I put 3-4 drops on, & mailed it to him (so, to read his reaction on the thread he started, will give you some idea of the effectiveness).

Aromatherapy is very powerful on emotional problems (as well as physical problems such as sprains & burns etc).

Another angle to look into is diet. I discovered every Saturday night (after I'd bought & eaten my favourite bread from the market that morning), I was feeling really "down" & negative. Sometimes I even felt destructive & aggressive.

Grains, particularly white sliced bread, has a strong effect on my mood.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Bee,

I too am extremely depressed. I was hoping 2010 would be better but instead I am becoming sick and depressed. What you describe sounds like adrenal fatigue which I have where you can't handle things and everything makes you want to snap. I have that and it feels like depression.

I have suicidal thoughts and ask God to take me. Please take me. Sad, huh? I can't see living like this. It's been 21 miserable years with hardly any good times and they are so rare. I had a friend with Lyme disease say to me today that what I am living with is unacceptable, there has to be an answer. Well, what if there isn't?

Magnesium calms the muscles but doesn't touch my depression. Not one bit. It helps with sleep. And that helps the depression but the depression for me is coming from being ill and having no one to turn to or to know WTF is going on in my body? Why am I feeling like I have the flu and this is going on for 2 months and it's not getting better.

I too can't take meds. I do take Remeron but that helps with sleep, and even that doesn't always work. It does nada for my depression. I have never been in a depression like this. I don't wish it on anyone. I can handle pain better.

I know I am depressed when I just don't care about anything. Music is my love, but I don't care about it. Art is my job, but I don't care about it. What happened? The light is remaining out.

You are not alone. Not at all.
 

Carrigon

Senior Member
Messages
808
Location
PA, USA
There are no easy answers. For whatever the reason God and the powers that be want us alive. What always amazes me is we hear news reports every day of lots of people dying. They die from accidents, tsunamis, war, everything. They die in mass lots, like more than five people will get killed in a bombing. But here we are, not allowed to die. That just gets me. I don't understand it. Healthy people with great productive lives die every day, but we aren't allowed to die. What is up with that? I don't know.

I struggle with it every day. I feel I am just going through the motions. That's almost funny cause if you watch the Buffy musical, that's exactly what it's like. Going through the motions, and give me something to sing about.

We're hear. We're sick. Why we are expected to live like this when it isn't living, I haven't a clue. But someone up there wants us to be here. So I guess there is some reason. I just wish we knew what it was.
 

jace

Off the fence
Messages
856
Location
England
This might sound a little weird, but WTF..

I spent 5 years of my life nursing people, 1991 - 1996. I was not trained, just an auxillary carer. It was one of those times in the life where evrything goes pearshaped, all doors closed on us, and to support the family I just did whatever I could, which was this. At least the road had heart, if but little money.

I looked after folk with late stage AIDs and folk with MS. And it's this group of patients I want to talk about. It seemed so unfair to me that people got so sick. There seemed no rhyme or reason that this one (me) was well, when these lovely souls suffered so much. I came to terms with it when I generated the up to now private theory that there is a certain amount of suffering in the world and it has to go somewhere, and it's the good guys that get more than their fair share.

I've only been ill with ME since last February, compared with many here that's no time at all, but I can relate to the wish to be gone from this life. Some say that if you are still here, it's because you still have work to do. Maybe that's true. It is hard to see what effect we have on the world, but just sharing real stuff, such as is posted in this and other forums, is affecting others. May your good days grow.

The Mohammedan expression "Insh' Allah" (as god wills) has resonance with me.
 

Carrigon

Senior Member
Messages
808
Location
PA, USA
I think we're here to observe. I also think we're here as a test for other people. When they treat us badly because we are sick, they fail the test. They have no compassion, no feeling, they are empty and dead inside. I really believe we are their test from God. And they are failing it in every way.

I'm not sure why else we're here. Some of us have done creative things we wouldn't have otherwise gotten to do if we were healthy.

There are other things, bigger things. With us out of the workforce, it contributes to global economic collapse. In order for the human race to really move forward in the future, there needs to be one world government, one world economy. I believe that will happen in time, but maybe not in our lifetime.

I wish none of us had to suffer like this. I wish I had my health.