CFS, burnout or depression ? Help please!

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Hello and thanks for reading!

I am a 30 year old male who up until last year was a healthy man with no underlying conditions, and was actually doing quite well at gym (4 days a week) and very good condition.

2016 on a while though wasn't a great year , I found out my partner was seeing someone else and caused a lot of stress trying to unravel the truth as she never admitted it but drove myself crazy for couple months!

I'm cutting out loads here but cut a long story short , I then developed a random patch of alopecia on my beard ) bald spot no bigger than a 10 pence ! I felt fine , but googled it and said it was either auto immune or stress *

I still have the spot now one year on and has not grown back.

Around august so pretty much a year ago from now , I suddenly shut down. I had pounding headaches. And i don't mean headaches you get when hungover or had no sleep , I mean pounding disabling headaches! These lasted at this severity for 2 weeks. I then stressed myself out more thinking I have a tumour I'm going to die !! It was all so random how they just started. I felt exhausted. Falling asleep by 7pm sleeping 12 hours straight. Then I had brain fog for months , dizziness , weak felt like I was riddled with a disease but I looked fine ! Still had colour , no temperature , wasn't vomiting or anything ?!?!

Again trying to keep this story short ish I'm still living with this however there has been slow improvement.

I have had MRI scans of the brain , 2 CT scans , Lumber puncture (spinal tap) and atleast 6 blood tests. Thyroid , hormones , even an ANA blood test. All fine !!

The falling asleep has at 7pm has stopped although I'm always tired. I'm not bed bound 24/7 however I don't go out much now. My muscles feel week and headaches have eased from chronic daily headaches and pounding ones to just the odd headache maybe once a week. I stay on my feet more than I did , and I can go food shopping etc however I have quit work ! I don't claim benefits as I fear that will be final straw to letting this thing beat me!

I wonder if this is just sever burnout stress rather than CFS? I feel so guilty when I see people with CFS who can't walk , or lift a bag because it causes them immense pain for days after and I think but I'm not that bad? I'm bad but not that bad if this makes any sense. I can still function day to day , just whatever that freaky episode was , it's left my body in ruins.

Neurologist diagnosed me with CFS and said people can get better with time. Some don't. Everything I've read is horror stories where people offer no hope.

I want to run , go back to work , see my mates have a beer , but I can't. I want to go to theme parks with my son but i can't. He will have to do with occasional kick about in garden. I wonder what people's opinions are on all this , the physical symptoms are very real still to this day. I used to be the type of guy who would say ah get on with it , mind over matter. But really this isn't like that atall !

You wonder if there's an underlying disease they haven't found , yet I seem to have had every test in the book !

Please help on opinions whether it's CFS, burnout , stress depression in open to all ideas however please bare in mind this hit me out of no where , thank you very much x

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12 Replies

  • Posted

    HI Reyad,

    I'm so sorry to hear about the diificult time you are having with this. It sounds like you have CFS, but as we all know, depression can go hand and hand with it. Not all people who have CFS are home bound; there are so many different degrees of this disease. Hopefully you have a more mild form. My chronic fatigue started after a very stressful event in my life, as well.

    I have periods and days where I feel better, but I rarely feel 100% rested the way I used to feel. I would suggest that you pace yourself and try to avoid as much stress. Try to get the right amount of sleep. I take an tricyclic anti-depressant to help promote REM sleep. As you may know, many of us are exhausted but can't sleep.

    I also used to be the type of person that loved going out with friends and was very active. I now have to be selective about what is important to me and limit myslef. It is hard to make committments, becasue I never know how I'm going to feel, but I try to funtion as best as I can. I'm funtioning at about 40-75% depending on the day. 

    I hope this helps. Good luck. KPD

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  • Posted

    Don't give up, return to some normal life is possible. I too wonder if my CFS is burn out but I no longer care about finding the cause, I am on a mission to get better, after years of struggling I have had enough and success is here, I can cycle 45 miles now.

    how did I get here, it's taken me about 3 years. Pacing is the key and saying NO a lot. Learning how much energy I can spend in a day and then no more. I view it as trying to run a marathon when you can't walk yet. It's a very long programme with ups and downs. I do too much, pay for it and go back a few steps. Learn from it and then don't do it again. 

    Cycling was my exercise. When I first started I couldn't spin the pedals for a minute and I use to be able to cycle 60 miles without training. Now 35 miles, even up steep hills is possible. 

    Best of luck, be patient and don't give up 

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  • Posted

    Hi Reyad,

    Have you been tested for Lyme Disease? Most doctors ignore it completely, but here in the States, there are hundreds of thousands of cases. Getting diagnosed isn't easy, as it's known as the Great Imitator."

    Here's a link to Canada's Lyme website so you can see what the symptoms are:

    https://canlyme.com/lyme-basics/symptoms/

    There are far too many people searching for answers that are very hard to find. Sorry you are one of them!

    Good luck, Koresun

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  • Posted

    Hi, it sounds like you have a lot to deal with at the moment and need help coping with stress, exhaustion, muscle weakness, depression and poor sleep patterns. It does sound as if you've burnt yourself out and really need to rethink your day to day living to see some improvements.

    ?The things that have helped me the most are pacing myself, healthy diet, very gradually increasing activies, CBT and relaxation techniques. When I was first ill I was practically bed bound for a year but very slowly improved through trying different things. I have good and bad days but on a good day now I can do things like walk the dog for an hour and do yoga which is a huge improvement on how I was when first ill.

    ?The best book I've read on CFS is one called Fighting Fatigue by Sue Pemberton and Catherine Berry. It is full of helpful solutions to for coping with CFS. It covers things like managing your daily activity and energy, sleep, diet, stress and relaxation, managing your moods, dealing with other people, physical activity and exercise and relapses. You might find it helpful to read as it would give a goal too aim for to getting your life back on track. Don't give up hope - things can get better!

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  • Posted

    It does sound like you have a relatively mild form of ME/CFS. There's a very broad spectrum of severity of symptoms with this illness, from people who are able to work, to those who are bedridden. You mention slow improvement in your post, which is a very good thing. If you pace yourself and don't push outside of your energy envelope, you may get much better and find your way out of this illness. People can get better. Regarding whether someone has ME/CFS or depression--first of all, you can have both. It's very hard not to be at lest somewhat depressed with such a loss of function. Here's what I think of as the main difference between depression and ME/CFS. With depression, a person typically does not want to do anything. With ME/CFS, a person wants to be active but can't. This can result in a huge amount of frustration.

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    • Posted

      Hi Jackie,

      You really summed up the difference between depression and CFS very weill. Thanks, KPD

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  • Posted

    Thank you very much for all the kind replies , I will take chunks of advice from each post !

    When I say I'm improving slowly , I still feel awful but I'm atleast I'm not bed bound like the first 2 months! I can now tolerate light , and sit in the living room for example. I can potter round during day , light house work , pop to shops but I always need an 1 or 2 sleep in afternoon... however ... every 4 weeks or so I have a bad flare up" as in achey muscles , weak , and I get dragged to bed more , this normally lasts 5 days to a week.

    I have heard this is through not learning how to pace andn is a crash "

    I have been referred to CBT and graded exercise although some people tell me this is a waste of time ?

    I have put on 2.5 stone in weight around 35 IBS) in the last 10 months through eating crap food that gives me quick bursts of energy.

    1 thing I forgot to mention which I don't know is relevant is I did get a stomach virus called H PYLORI around a month before. But I simply took anti biotics and that was healed ? I was staring into space a lot before I got wiped out , maybe the body was slowly shutting down and I was exhausted through stress then the virus topped it off?

    You all seem very honest and positive which I like , I see a lot of con artists on the internet trying to sell you the miracle cure , but I now rely on the NHS eho have no knowledge about this vile illness to be honest.

    Does crashing mean I'm not recovering ? Or is normal to crash with flu symptoms as part of the process ?

    I hate the name chronic fatigue , people always say I'm tired to !! And I want to punch them lol because it's so much more than tiredness !!

    Many thanks again

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    • Posted

      A word of caution, Reyad. The NHS study that recommended CBT and graded exercise has been debunked. For instance, I tried graded exercise and became much more ill. That study did a huge amount of damage to the ME/CFS community, and many doctors--not aware of all the problems with the study--are still following its recommendations. I also wanted to mention that for many of us, the pathway into this illness started with a virus plus stress. That was the csse for me. Finally, crashing does not mean you're not recovering. It just means you've gone outside your energy envelope and need to rest. However, a doctor here in the U.S. believes that multiple crashes can lessen chances for a full recovery. She says it's better to prevent these crashes through pacing than to have to deal with them after the fact. 

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  • Posted

    1 more thing is sleeping at night would love tips

    I feel exhausted but brain won't switch off. I get into bed around 9.30 tired then suddenly my brain comes to life , I fall asleep around 12 , wake up at 4, 6 and finally 7.30 , I don't get why I come to life at night ?

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    • Posted

      Hi Reyad,

      Most people with CFS are exhausted, yet they can't sleep. I, too am often exhausted during the day, and then in the evenings, I feel much better. Feeling substantially better in the evenings gives me a false sense of hope, and I often think about all the plans I want to make during the next day. I do suggest that you ask you doctor about possbly prescribing you something to sleep. I think getting into a regular sleep pattern is so important because it improves the level we can function during the day. There are a few safe medications out there that can improve REM sleep. 

      I agree that CFS is such a terrible name for this illness. It makes me crazy when someone says, "I get tired, too!" They are clueless, but frankly, I didn't believe in CFS before it happened to me. The difficult part is that we look fine. 

      Do make sure that you have your thryroid checked. I've read some interesting articles on how the thryoid can cause many of the same symptoms of CFS. By the way, there is a small group of people who do improve with anti-viral medications, especially those who started with a virus. I took anti-viral meds for many years, and I do think my symptoms improved. My doctor found high levels of the Herpes 6 virus. 

      I recently came across this support group on Facebook. It's a private group. You may want to check it out.  It is a group of people who have been chronically ill for a long time and have not formally been diagnosed. It is called Undiagnosed Warriors - Support Group

       And, yes. Be careful of the people who claim to be able to cure you with costly supplements. I made that mistake once. Never again.

      Forgot to answer your other question...Many of us crash and have periods were we feel worse. That doesn't mean you are not gettting better. This is so common. Just rest, pace, meditate, do some graded exercise (if up to it), eat healthy, and you will get back to how your were feeling before. 

      Good luck. Keep us posted on your progress. KPD

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  • Posted

    Hi reyad,

    The causes of CFS/me can be stress related and as you stated you also had the issue with your beard, it could well be from the break down with your wife. My case started after a car crash and I was also an active, carry on type of person. I just stayed like I am now. It's hard to swallow because it's intangible. Many people with CFS/me have post viral fatigue first which then leads on to CFS/me. In a way maybe it is easier to think a virus caught your system out. I know of a woman getting it after an operation and another after pregnancy. I also know a young woman with CFS and fibromyalgia from a nasty break up with a boyfriend. It seems that we have to have had something that challenges the system: physically or mentally to end up with this condition. The good thing is that people can recover. As others have advised here, pacing and rest is the key.

    Also there are different levels of CFS/me: mild, moderate and severe. Sounds like you're mild to moderate as you aren't able to work at present. The mild level is where people can and do work but still have to account for the fatigue etc. People who are moderate aren't able to as far as I remember but do Google ME and the differences. I can't work either and it really bothered me but, I accept that to recover you need to concentrate on balancing activity and rest.

    Be good to yourself. Eat as well as you can and rest as much as you can. I know it's hard (I have children too and live alone) ask for help when you need it.

    Best wishes

    Beverley

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  • Posted

    Hi Reyad, 

    Just found this discussion and wanted to check in to see how you are doing, I myself am going through a similar story at the moment. I have just stopped work to try and rest and recuperate and early indications is after a very busy/stressful period in my life combined with a nasty virus I have early diagnosis of CFS. 

    I have always suffered a bit of brain fog daily and lack of energy, but none of which has ever stopped me from holding down a job. It could just be burn-out but my brain fog is incredibly bad at the moment. My physical activity has slowly improved ( I was bed ridden for a month and now can walk about 30 minutes a day) after a further month of pacing) 

    Just wanted to check in and hope you are doing better, you are certainly not alone....

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