Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
This is long, so sorry but I can't seem to condense it....
Dear DS friends
I am reading the Wikipedia definition of CFS and am struck again by the fact that a diagnosis of clinical depression or bipolar disorder automatically excludes a CFS diagnosis.
I have lived with depression for over 25years and with CFS for 8 years. I can appreciate the similarities between the conditions but to me they are two very different experiences. I'm interested in finding out if anyone else lives with and can distinguish between the two conditions.
My experience with CFS started with a period of significant stress which resutled in what I call a nervous breakdown. I literally felt something inside of me break. I reached out for help and saw a psychiatrist and over a course of 2 years cycled through 8 different anti-depressants.
I was experiencing a new set of symptoms which just would not clear up and just kept getting worse with medication. I was nauseated all the time, I couldn't think, I was walking into walls, I was in pain all the time and just could not get rid of this overwhelming, crippling fatigue. I gained 60lbs and my hair turned grey over the course of a few months.
When I stopped taking the anti-depressants the symptoms eased somewhat, the nausea went away and my weight stabilized but the other symptoms remained. This is what I call CFS.
I was diagnosed with Bipolar Disorder a few years ago, depression is a big part of my experience but I also get hypomanic episodes. BPD is cycles so I get fairly predictable swings from hypomania to depression.
I think that sometimes I can clearly identify when I am dealing with BPD and when the CFS is influencing me. Other times I feel caught between the two conditions so I will have the energy and drive that comes with a BPD high but the exhaustion and weakness that comes with CFS. Those periods are very frustrating,
Let me try to summarize the differences I can detect between CFS and the depressive side of BPD.
FATIGUE
Yes depression makes me tired. I get listless and apathetic and don't want to do much of anything. It is nothing compared to the debilitating fatigue of CFS.
Before CFS I loved to work on my home and would do strenuous, physically demanding labor when depressed. This activity was one of my coping mechanisms. With CFS even simple tasks like hanging a curtain rod can be too demanding for months on end. Some days I am so weak I cannot hammer a nail.
RECOVERY
With depression I'd crawl into my cave and hibernate for a few days than I'd recover and go back to running full-speed ahead while juggling a dozen balls in the air.
I remember distinctly having a point where I noticed that my body was not responding to exercise as it used to. I've always enjoyed exercise and pushing my body hard but with CFS I wasn't getting the rush aafter exercise and my body just felt different. As the CFS worsened I got to the stage where my body would just shut down for days even weeks after significant exertion. I never had that with depression.
I have always had a temper and can rant and rage with the best of them. With depression a rant would clear the angst and I'd feel better. With CFS a rant can land me in bed for days or even weeks. Before CFS I thrived on stress and actively sought out challenging situations. Now goal in life is to avoid stress as much as possible because stress can lay be out more effectively than anything else.
MOOD
For me a clear marker of a depressive episode is when I lose interest in everything. I experience significant malaise, I don't find joy and I just want to crawl into a hole and go to sleep. Before CFS my response to a depressive episode would be withdrawal and I could read/sleep for days on end.
When I crash with CFS I shut down physically and mentally. I can't concentrate enough to read or watch tv. Sometimes my body needs rest so much I'll sleep for hours and wake up feeling like my body is cannibalizing itself. I feel a tremendous need for energy and my body just can't seem to get enough. With CFS I'll sleep for days even weeks waking only to eat and use the bathroom. And I'll still wake up tired.
Before CFS I did not experience a lot of the self-esteem issues that come with depression. I'm pretty confident, I'm comfortable in my own skin, I love myself, I love others, I love life. Even depressed guilt, shame, self-pity etc were not feelings which I contended with.
I started to experience anxiety and feelings of helplessness with CFS. They have gotten worse over time. I also note a singificant increase in the tendency toward feelings of self-pity, helplessness, worthlessness, shame and guilt.
Isolation is a feeling I associate with depression. Its not just about feeling lonely, with depression I feel like I'm in a glass bubble. I can interact with the world, I look normal but there's a barrier that I cannot cross. The rest of the world can tap into something that I can't and I'm alone, trapped in my bubble.
With CFS the isolation has become physical. Loss of ability to participate in activities, socialize and even work combined with limited tolerance of interactions with others has created a double-whammy. So even when I'm out of my bubble I'm feeling more alone and isolated than ever.
PAIN
I don't get pain with depression. With CFS my joints feel like they have acid pooled in and around them. My muscles feel like I've done a 10 mile hike, everything hurts.
I sometimes get some weird headaches that to me feel like a stroke, they always worry me.
With CFS pain has become my norm. I'm in pain everyday and I've learned to ignore it. People will see my face scrunched up (headache) or see me rubbing my tummy or limping, its when they comment that I become conscious of the pain.
I've also developed IBS type symptoms. Excruciating pain which has me writhing and groaning sometimes for hours. Been to so many doctors, so many tests, so many treatments .. this is now part of my new normal.
COGNITIVE IMPAIRMENT
Never had cognitive issues with depression. Have always been able to concentrate and function at higher than average levels of intelligence.
With CFS I can't even complete an IQ test. Words jumble in my head or disappear into the void. When I write I reread and correct 4-5 times, I write like I'm dyslexic. I frequently lose the ability to read and comprehend for long stretches (weeks even months). Yup. Brain fog is a reality. Never had that with depression, ever.
OH .. and I get visual disturbances where my vision blurs to the point where I can't read street signs or even make out human faces. Had my eyes checked and they're perfectly fine. This only happens when I'm crashing.
PHSYCAL / POSTURAL CHALLENGES
25 years with depression, never had physical issues. Strength, coordination etc have always been perfectly fine.
With CFS my ability to judge distance seems to be off a bit, to the point where I'm aiming for the door and run into the wall. Or I go to sit and miss the chair. Or I don't lift my feet enough and stumble on the edge of the sidewalk. I have so many bruises that I've picked up from just stumbling into stuff, sometimes without even realizing it.
When I'm crashing I do get dizzy and lose my balance. It's so hard to sit upright and when I'm standing up I feel the pressure through my entire body. I also find that my head is extremely heavy.
So with depression I'd lie down because I don't have the motivation to get up. With CFS I lie down because I can't get up.
SENSITIVITIES
Aaargh! I've always been sensitive to smell. Now I get to add sensitivity to light, sounds, noise and [drumroll please] ENERGY. I'm now sensitive to other people's general energy and will channel whatever they are feeling (well usually the negative stuff).
I had a girlfriend living with me who has significant levels of anxiety, OMG it was like nails on a chalkboard. Just being in the same house with her stressed me out horribly, just from her energy.
DEBILITATION
Depression has always been part of my life but I led a full, rich and active life despite it. Before CFS I had maybe 1 major depressive episode per year. I think I would have a few minor slumps which I could process and recover from in a weekend. With CFS depression has become a constant.
Before CFS my 'normal' was hypomanic. I always seemed to have more energy and curiousity and bandwidth than everyone else. I always dreamed bigger, reached higher and usually succeeded at whatever I put my mind to.
With CFS my normal is depressed. I have no energy, simple things seem so hard and I now fail at pretty much everything.
ABILITY TO PUSH
I've always been a go-getter, I have always challenged myself and I believe in reaching for the stars. I now get so frustrated when people say "If you really wanted to, you could push through this".
I CAN'T!!
I hate that phrase, never entertained it before but now it is my reality. I can't push through because when I do I crash.
But I do it anyway. Sometimes I push just for the satisfaction of getting something done. Sometimes I push because I'm mad at the limitations of this damn disease. Sometimes I push because I still don't get that making a bed may be outside of my capability. So my life is really just a never-ending series of push-crash cycles.
COMORBIDITY
Before CFS with depression I was slightly overweight (5'6", 145 lbs) and always exercising, dancing, doing martial arts, hiking etc. I was always in the process of losing that last 10 lbs. Truth is I was in good physical shape, fairly fit and rarely had reason to visit the doctor.
In the last 8 years I've consulted with 15-20 doctors. For 5 years I was at the doctor monthly, doing tests every visit, trying new treatments every 2-3 months and living as a walking zombie (side-effects)
.
Now I use the bathroom 4-6 times per night (kidney damage from meds), have been diagnosed with high levels of toxicity and cortisol overload. Liver is under duress, blood pressure is high and am pre-diabetic.
My docs have noted that I seem to constantly have some type of low grade infection. I still live with undiagnosed issues that I just don't have the energy to try to figure out anymore. So I went from a clean bill of health, to things falling apart in a relatively short period.
CONCLUSION
So that my friends is my journey with depression and CFS as simultaneous conditions but certainly not the same. I would really like to hear your experience.
Dear DS friends
I am reading the Wikipedia definition of CFS and am struck again by the fact that a diagnosis of clinical depression or bipolar disorder automatically excludes a CFS diagnosis.
I have lived with depression for over 25years and with CFS for 8 years. I can appreciate the similarities between the conditions but to me they are two very different experiences. I'm interested in finding out if anyone else lives with and can distinguish between the two conditions.
My experience with CFS started with a period of significant stress which resutled in what I call a nervous breakdown. I literally felt something inside of me break. I reached out for help and saw a psychiatrist and over a course of 2 years cycled through 8 different anti-depressants.
I was experiencing a new set of symptoms which just would not clear up and just kept getting worse with medication. I was nauseated all the time, I couldn't think, I was walking into walls, I was in pain all the time and just could not get rid of this overwhelming, crippling fatigue. I gained 60lbs and my hair turned grey over the course of a few months.
When I stopped taking the anti-depressants the symptoms eased somewhat, the nausea went away and my weight stabilized but the other symptoms remained. This is what I call CFS.
I was diagnosed with Bipolar Disorder a few years ago, depression is a big part of my experience but I also get hypomanic episodes. BPD is cycles so I get fairly predictable swings from hypomania to depression.
I think that sometimes I can clearly identify when I am dealing with BPD and when the CFS is influencing me. Other times I feel caught between the two conditions so I will have the energy and drive that comes with a BPD high but the exhaustion and weakness that comes with CFS. Those periods are very frustrating,
Let me try to summarize the differences I can detect between CFS and the depressive side of BPD.
FATIGUE
Yes depression makes me tired. I get listless and apathetic and don't want to do much of anything. It is nothing compared to the debilitating fatigue of CFS.
Before CFS I loved to work on my home and would do strenuous, physically demanding labor when depressed. This activity was one of my coping mechanisms. With CFS even simple tasks like hanging a curtain rod can be too demanding for months on end. Some days I am so weak I cannot hammer a nail.
RECOVERY
With depression I'd crawl into my cave and hibernate for a few days than I'd recover and go back to running full-speed ahead while juggling a dozen balls in the air.
I remember distinctly having a point where I noticed that my body was not responding to exercise as it used to. I've always enjoyed exercise and pushing my body hard but with CFS I wasn't getting the rush aafter exercise and my body just felt different. As the CFS worsened I got to the stage where my body would just shut down for days even weeks after significant exertion. I never had that with depression.
I have always had a temper and can rant and rage with the best of them. With depression a rant would clear the angst and I'd feel better. With CFS a rant can land me in bed for days or even weeks. Before CFS I thrived on stress and actively sought out challenging situations. Now goal in life is to avoid stress as much as possible because stress can lay be out more effectively than anything else.
MOOD
For me a clear marker of a depressive episode is when I lose interest in everything. I experience significant malaise, I don't find joy and I just want to crawl into a hole and go to sleep. Before CFS my response to a depressive episode would be withdrawal and I could read/sleep for days on end.
When I crash with CFS I shut down physically and mentally. I can't concentrate enough to read or watch tv. Sometimes my body needs rest so much I'll sleep for hours and wake up feeling like my body is cannibalizing itself. I feel a tremendous need for energy and my body just can't seem to get enough. With CFS I'll sleep for days even weeks waking only to eat and use the bathroom. And I'll still wake up tired.
Before CFS I did not experience a lot of the self-esteem issues that come with depression. I'm pretty confident, I'm comfortable in my own skin, I love myself, I love others, I love life. Even depressed guilt, shame, self-pity etc were not feelings which I contended with.
I started to experience anxiety and feelings of helplessness with CFS. They have gotten worse over time. I also note a singificant increase in the tendency toward feelings of self-pity, helplessness, worthlessness, shame and guilt.
Isolation is a feeling I associate with depression. Its not just about feeling lonely, with depression I feel like I'm in a glass bubble. I can interact with the world, I look normal but there's a barrier that I cannot cross. The rest of the world can tap into something that I can't and I'm alone, trapped in my bubble.
With CFS the isolation has become physical. Loss of ability to participate in activities, socialize and even work combined with limited tolerance of interactions with others has created a double-whammy. So even when I'm out of my bubble I'm feeling more alone and isolated than ever.
PAIN
I don't get pain with depression. With CFS my joints feel like they have acid pooled in and around them. My muscles feel like I've done a 10 mile hike, everything hurts.
I sometimes get some weird headaches that to me feel like a stroke, they always worry me.
With CFS pain has become my norm. I'm in pain everyday and I've learned to ignore it. People will see my face scrunched up (headache) or see me rubbing my tummy or limping, its when they comment that I become conscious of the pain.
I've also developed IBS type symptoms. Excruciating pain which has me writhing and groaning sometimes for hours. Been to so many doctors, so many tests, so many treatments .. this is now part of my new normal.
COGNITIVE IMPAIRMENT
Never had cognitive issues with depression. Have always been able to concentrate and function at higher than average levels of intelligence.
With CFS I can't even complete an IQ test. Words jumble in my head or disappear into the void. When I write I reread and correct 4-5 times, I write like I'm dyslexic. I frequently lose the ability to read and comprehend for long stretches (weeks even months). Yup. Brain fog is a reality. Never had that with depression, ever.
OH .. and I get visual disturbances where my vision blurs to the point where I can't read street signs or even make out human faces. Had my eyes checked and they're perfectly fine. This only happens when I'm crashing.
PHSYCAL / POSTURAL CHALLENGES
25 years with depression, never had physical issues. Strength, coordination etc have always been perfectly fine.
With CFS my ability to judge distance seems to be off a bit, to the point where I'm aiming for the door and run into the wall. Or I go to sit and miss the chair. Or I don't lift my feet enough and stumble on the edge of the sidewalk. I have so many bruises that I've picked up from just stumbling into stuff, sometimes without even realizing it.
When I'm crashing I do get dizzy and lose my balance. It's so hard to sit upright and when I'm standing up I feel the pressure through my entire body. I also find that my head is extremely heavy.
So with depression I'd lie down because I don't have the motivation to get up. With CFS I lie down because I can't get up.
SENSITIVITIES
Aaargh! I've always been sensitive to smell. Now I get to add sensitivity to light, sounds, noise and [drumroll please] ENERGY. I'm now sensitive to other people's general energy and will channel whatever they are feeling (well usually the negative stuff).
I had a girlfriend living with me who has significant levels of anxiety, OMG it was like nails on a chalkboard. Just being in the same house with her stressed me out horribly, just from her energy.
DEBILITATION
Depression has always been part of my life but I led a full, rich and active life despite it. Before CFS I had maybe 1 major depressive episode per year. I think I would have a few minor slumps which I could process and recover from in a weekend. With CFS depression has become a constant.
Before CFS my 'normal' was hypomanic. I always seemed to have more energy and curiousity and bandwidth than everyone else. I always dreamed bigger, reached higher and usually succeeded at whatever I put my mind to.
With CFS my normal is depressed. I have no energy, simple things seem so hard and I now fail at pretty much everything.
ABILITY TO PUSH
I've always been a go-getter, I have always challenged myself and I believe in reaching for the stars. I now get so frustrated when people say "If you really wanted to, you could push through this".
I CAN'T!!
I hate that phrase, never entertained it before but now it is my reality. I can't push through because when I do I crash.
But I do it anyway. Sometimes I push just for the satisfaction of getting something done. Sometimes I push because I'm mad at the limitations of this damn disease. Sometimes I push because I still don't get that making a bed may be outside of my capability. So my life is really just a never-ending series of push-crash cycles.
COMORBIDITY
Before CFS with depression I was slightly overweight (5'6", 145 lbs) and always exercising, dancing, doing martial arts, hiking etc. I was always in the process of losing that last 10 lbs. Truth is I was in good physical shape, fairly fit and rarely had reason to visit the doctor.
In the last 8 years I've consulted with 15-20 doctors. For 5 years I was at the doctor monthly, doing tests every visit, trying new treatments every 2-3 months and living as a walking zombie (side-effects)
.
Now I use the bathroom 4-6 times per night (kidney damage from meds), have been diagnosed with high levels of toxicity and cortisol overload. Liver is under duress, blood pressure is high and am pre-diabetic.
My docs have noted that I seem to constantly have some type of low grade infection. I still live with undiagnosed issues that I just don't have the energy to try to figure out anymore. So I went from a clean bill of health, to things falling apart in a relatively short period.
CONCLUSION
So that my friends is my journey with depression and CFS as simultaneous conditions but certainly not the same. I would really like to hear your experience.
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A tree outside where I live is dying, seemingly from dog urine----with the bully in my building going out his way to not only have his dog urinate there but to have the dog urinate on the fence and sign I bought to try save the tree----and then slide the sign under my apt door.Turns out that was a TRIGGER for me----bullying and humialtion right out of high school. I didn't realize it at the...
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I am suffering from the inability to cope with ordinary every day things. From my housework to watching tv or reading a book. I get palpatations, nervousness, at the moment my heart is palpatating and all I am doing is typing this. I am so scared its silly, I just want to stay in bed and just get up for meals and coffee. Not that that is going to happen. At the moment I have my daughter...
To me the major tell is that with depression (I have dear friends who are afflicted with deep dx depression) is that with depression you are exhausted and don't have any desire to get out of bed (as it were)..and with CFS you want to be out in the world and just physically cannot.. and the post exertional malaise element - depressed alone - about the same tiredness and darkness day after exertion... CFS - crashes.
For a while, I could do "pretend happy, happy" when I was around others. That only exhausted me more. Now, I can't even pretend.
I have no doubt that depression magnifies the CFS symptoms, at least for me.
Whew! Max PB, we have to make a way to master the depression, even if we can't control the CFS! We can't quit. We can't give in!
EVER!
Since then I have had ups and downs in both the CFS and the depression, with my mood usually following the direction of the fatigue. I'm in a strange place at the moment, where my physical ability is at an all time low, but my cognitive function isn't too bad (I'd say about half my normal level). Depression is just a part of my everyday life now. It's a real struggle to keep from sinking into it so far that I just totally give up.
If I can find a med that helps, I'll let everyone know about it.
Cross fingers, pray, etc, etc.
I think Dr. Jarred Younger made a very valid point regarding CFS.
http://selfhacked.com/2016/03/29/dr-jared-younger-cutting-edge-research-on-cfs-neuroinflammation-pain-and-fatigue/
The difference is that situational depression disappears when the environment which creates it is changed...major depressive disorder does not do this.
Sure I'm depressed. But I don't want somebody feeding me happy pills, I want someone to deal with my illness and help me cope with my symptoms...or at least acknowledge that I have a real physical illness instead of treating me like I'm just a whining hypochondriac.
Everything seems connected but I have insisted my entire life that there is something physical behind it. I have good instincts for such things and know my body. Something physical is setting off all of the changes in mood, exhaustion, and there are days where I just feel like I am fighting every structure of my body to move around. I have to apply lots of willpower to order my muscles to work and then my muscles fight against the tendons and ligaments that do not want to move the joints. It all causes a huge loss of energy. Sleep deprivation, depressed mood, stress, and anxiety are the tip of the iceberg in a world where no one believes anything exists below the water's surface.
maxpb, the "fact" that a diagnosis of clinical depression or bipolar disorder automatically excludes a CFS diagnosis is horseshit. I've had clinical depression for most of my life and ME/CFS (though I prefer the IOM's name Systemic Exertion Intolerance Disease; SEID) for going on seven years. I can tell you for a fact YOU CAN HAVE BOTH. A doc even hung "bi-polar" on me, though I've read the DSM and I don't match the dx for any form of BP. That Wiki definition is just more ill-informed crap.