Hi all,
I was diagnosed with ES 2 weeks ago - after 24 years of pain and what I was told was fibromyalgia.
I was wondering if anyone could explain how ES would cause fatigue? Is it the restriction of blood flow? Or that pain is exhausting?
By the way, does anyone else find the word 'fatigue' totally lacking in describing their level of exhaustion?
~~ Hopeful
"Fatigue" does not do it justice.
I could nap for 4 hours........wake up and want to curl up and go to sleep again. Everyday.....you just slog through it.
Amen Hopeful.....I feel your pain (fatigue).
todd
~~ Yeah, I go to bed around 8 pm .... sleep at least 10 hours, usually more. Then in the morning I have anywhere between 3 to 6 hours before I have to take a nap (90 minutes minimum). That takes me into the mid-afternoon, where I again have 3 to 6 hours before it's nightie night, lights off. ~~ As you can see, I am a real party animal!
My best to you, Go Cougs,
Hopeful
Go Cougs! said:
"Fatigue" does not do it justice.
I could nap for 4 hours........wake up and want to curl up and go to sleep again. Everyday.....you just slog through it.
Amen Hopeful.....I feel your pain (fatigue).
todd
I’m so glad I’m not the only one that just wants to sleep. Just taking a shower I just want to go back to bed. And when I’m at work I’m fighting to keep awake 
I’m in bed by 5…45 every Saturday night and 5.45 every Sunday night when I don’t work I’m back to bed by noon. It is nothing for me to sleep the day away after I take pain relief
I definitely think it's an oxygen thing to the brain, in the case of carotid compression. If it's jugular compression, then the pressure IN the brain is higher...just like the pressure a tumor puts on a brain, or a brain injury....people with these sleep a lot. That's all just my hypothesis, with some rookie research on my part. I don't know about the pain fatiguing aspect...I don't have the pain in my ES.
On those fatigue days (mine would come in chunks of days, followed by a decently awake day), I would get up, drink coffee, sit there in pretty much a complete stupor, and give up and go back to bed. I would get up later, and was good for about 4 hours a day. I was always sighing, and overall felt like I had just drank a bottle of NyQuil. I slept 20 hours a day, and felt like I hadn't slept for even an hour. It was too much to sit upright...I was always slumped over, and walked with a shuffle. I would be all excited about doing something that day, and within an hour, feel completely exhausted, and was 'over' the exciting plans for the day. I was just too damn tired! Those days frustrate me more than anything; I haven't had that in a few weeks-- thankfully!!
One thing that wipes me out is the vertigo. I was told it was because the brain is overtaxed by the disagreement in the feeling of spinning vs what the brain is receiving...a signal mix. The brain is constantly trying to make the senses agree, or something like that.
I tried explaining this overwhelming fatigue to friends, and they say, "Oh, yeah...I've had that. It sucks." NO...that is nothing you have had. I promise you. THIS type of fatigue is beyond normal exhaustion. It's like knowing the difference between "It's hot in here," and your body catching fire. If your body ever actually caught on fire, you would KNOW it; there would be nothing else you could compare it to in intensity. It's nothing compared to 'it's hot in here'. Make sense? It is NOT a normal level of fatigue that happens after a hard days work in the office, or anything like that. If they caught on fire, they would realize it's quite different than any feeling they ever had before. All they can compare it to, though, is something far less intense. It's hard to explain to people, for sure.
I think Tee has a great handle on this and , personally, I have learned a lot from her!!!
People should utilize her knowledge, as she has gone over and above the "clinical research" aspect of this!!! :o)
I think what she said is dead on.
However, I have a slightly different take......but I think her info is accurate too.
I think that your brain is using so much "energy" (for lack of a better word) to get you "right"......it recognizes that you are cognitively not all there. Therefore, the energy spent from your brain trying to "right the ship" is a major reason why you are constantly exhausted. It is the core piece of what makes you tick.......and when it (the brain) is working a double shift (sometimes triple shift).......pure exhaustion will take place.
Again......my own personal opinion and I do not have any clinical testing to back it up, just my 2 cents :o)
Todd
~~ Thanks guys for your input!
Some of the way you put it sounds a lot like the theory behind Fibromyalgia. Here's how the story goes ... in fibromyalgia there is some huge affront to the central nervous system (which can be viral, an accident, a death in the family ...) - something that knocks the central nervous system out of whack. In the case of someone with Eagle Syndrome, THAT could be the affront to the central nervous system, which triggers fibromyalgia. ~~ and fatigue is a symptom of fibromyalgia also.
Basically, in fibromyalgia, the central nervous system is hyper-sensitive to pain and other 'stressors' ... and because it's hypersensitive, it's running full board when it doesn't have to be. An example: press a trigger point on a healthy person and he feels a light pressure. Press a trigger point on someone with fibromyalgia and the central nervous system misidentifies and he feels a hammer pounding him.
I don't know, maybe I'm stretching it a little. I just saw my fibromyalgia doctor yesterday for the first time since being diagnosed with ES. He looked at me like I had two heads ... and didn't have much to offer except to explore the hell out of my options.
What do they say? A rose is a rose by any other name? I have what I have so nomenclature isn't really relevant. But definitely, 'fatigue' doesn't come close to our experience.
Thanks so much for your input,
Hopeful
Aw, thanks guys! I think we are figuring out what symptoms go with what, piece by piece..... it's certainly a slow-go in wading through symptoms and possible causes, then relaying this to docs and hoping that they are willing to hear it all out.
I know there are people here who report oversensitivity like you describe, Hopeful.
I don't have much to offer in the way of theories, but I can say that I know what the fatigue feels like. I have quite literally been laying in bed for over a year now, I've moved my PC here and even the thought of getting up is exhausting at this point. I've been trying to blame it on depression and anxiety stemming from the pain I've been having, until my recent diagnosis. Really hopeful everything is connected to ES at this point and I can one day be free of this jail. It has ruined my entire life, and changed the person I am completely. I no longer talk to friends, I don't go out anywhere, just sit/lay around in bed all day waiting on my next appt, and sleep 18 hours a day.
Been dealing with it since I was 23, am 26 now. Was a very active/athletic person with almost too much energy, would run several km's a day. Even in the prime of your life ES can seemingly knock you down and completely drain you of energy. The side effects of the syndrome while waiting for a diagnosis or even because of severe pain (anxiety/depression) just helps to compound the effects even more in my opinion.
On the bright side, if beauty sleep is a real thing by the time we all have our surgery we'll be the most attractive people of our respective ages. (always need to find a positive in the negatives to keep you going is what I've learned!) :)
Hi Canuck,
~~ I'm so sorry for what you're going through. I totally hear you. I was training for my third Ironman when I got sick one month before my 30th birthday. I'm now 54!
But I love love love your theory! I'm running to the mirror to see how beautiful I am after so much sleep!
Be well, Hopeful
Canuck said:
I don't have much to offer in the way of theories, but I can say that I know what the fatigue feels like. I have quite literally been laying in bed for over a year now, I've moved my PC here and even the thought of getting up is exhausting at this point. I've been trying to blame it on depression and anxiety stemming from the pain I've been having, until my recent diagnosis. Really hopeful everything is connected to ES at this point and I can one day be free of this jail. It has ruined my entire life, and changed the person I am completely. I no longer talk to friends, I don't go out anywhere, just sit/lay around in bed all day waiting on my next appt, and sleep 18 hours a day.
Been dealing with it since I was 23, am 26 now. Was a very active/athletic person with almost too much energy, would run several km's a day. Even in the prime of your life ES can seemingly knock you down and completely drain you of energy. The side effects of the syndrome while waiting for a diagnosis or even because of severe pain (anxiety/depression) just helps to compound the effects even more in my opinion.
On the bright side, if beauty sleep is a real thing by the time we all have our surgery we'll be the most attractive people of our respective ages. (always need to find a positive in the negatives to keep you going is what I've learned!) :)
I'm so glad to see that someone has fatigue with ES as well. It's starting to think it's one of my biggest issues but I'm not sure if ES that is causing it or not.
I started a new job early Nov 2014 and I have a lot on my plate at this company and I'd like to do really well as it's a good job. I'm having issues with concentration and getting motivated and I'm lacking in mental energy and assertion. I've been trying to figure out why I've been feeling so tired and ill and don't want to seem like a drama queen / hypochondriac / mental case to all my colleagues.
I've been on the hunt for answers since the beginning of July 2014 in relation to ES. I've always been a very active and sporty person. I like to ride my bike to work and for the past 6 weeks I've felt too weak to do so.
Are you saying that the fatigue comes and goes? I don't really feel like my energy levels have increased much lately (6 weeks or so). I've been eating extremely healthily and thought that the fatigue was in relation to digestion issues or an endocrine problem (Adrenal or Thyroid).
I just want to get back to normal, do well in my job and start feeling like going out and exercising again. The most I can do it take a walk to the supermarket or drive for some lunch with my partner on weekends. Something has got to change!
I won't stop the hunt for answers and I will be seeing a specialist in the morning to speak about digestive disorders. I'm still hoping that the fatigue isn't due to Eagles. I can live with the feeling of having something in my throat, but I don't want to live with chronic fatigue after being such an active, healthy, sporty person. I want my life back!
Wow! This is awakening! Excuse the pun!!!! My husband just told me he thinks I'm depressed. Yes! it is part of the equation of having ES. I'm not sad.! Frustrated yes..... of feeling tired, constant headaches, dizzy, and a number of other physical symptoms... But, what kills me the most is.... losing quality time, with my new grandchildren (3yrs, 1yr, & 3mos) ... I would rather say goodnight, instead of living my life filled with Doctors rejection's, and not being productive, in my own life.....Blaah.....Day to Day....Every little things gonna be awright~ This forum is great therapy! Thanks for letting me babble......
MissEmme said:
I'm so glad to see that someone has fatigue with ES as well. It's starting to think it's one of my biggest issues but I'm not sure if ES that is causing it or not.
I started a new job early Nov 2014 and I have a lot on my plate at this company and I'd like to do really well as it's a good job. I'm having issues with concentration and getting motivated and I'm lacking in mental energy and assertion. I've been trying to figure out why I've been feeling so tired and ill and don't want to seem like a drama queen / hypochondriac / mental case to all my colleagues.
I've been on the hunt for answers since the beginning of July 2014 in relation to ES. I've always been a very active and sporty person. I like to ride my bike to work and for the past 6 weeks I've felt too weak to do so.
Are you saying that the fatigue comes and goes? I don't really feel like my energy levels have increased much lately (6 weeks or so). I've been eating extremely healthily and thought that the fatigue was in relation to digestion issues or an endocrine problem (Adrenal or Thyroid).
I just want to get back to normal, do well in my job and start feeling like going out and exercising again. The most I can do it take a walk to the supermarket or drive for some lunch with my partner on weekends. Something has got to change!
I won't stop the hunt for answers and I will be seeing a specialist in the morning to speak about digestive disorders. I'm still hoping that the fatigue isn't due to Eagles. I can live with the feeling of having something in my throat, but I don't want to live with chronic fatigue after being such an active, healthy, sporty person. I want my life back!
The pain just wears on you. If you are like me, it kind of sneaks up on you. Sometimes slowly, then bam, suddenly it is there everyday. All you want is relief and sleeping away the pain if you can is the best option.Then when you finally have a good surgery, you can't believe how bad you actually felt, because you realize it was worse than you even knew. Some of you may not agree, because it came on suddenly and ferociously, but not with me. I know I had the bone in my throat at least 10 years before I really went to a doctor. It was a slight feel at first and I did not really give it much thought.
Hope you all feel better. I am better most of the time. Sometimes, I still have ear and neck pain, but not sure if it is still eagles. Could be vertebrae and TMJ. I do have a horrible jaw.
Wow! This is awakening! Excuse the pun!!!! My husband just told me he thinks I'm depressed. Yes! it is part of the equation of having ES. I'm not sad.! Frustrated yes..... of feeling tired, constant headaches, dizzy, and a number of other physical symptoms... But, what kills me the most is.... losing quality time, with my new grandchildren (3yrs, 1yr, & 3mos) ... I would rather say goodnight, instead of living my life filled with Doctors rejection's, and not being productive, in my own life.....Blaah.....Day to Day....Every little things gonna be awright~ This forum is great therapy! Thanks for letting me babble......
MissEmme said:I'm so glad to see that someone has fatigue with ES as well. It's starting to think it's one of my biggest issues but I'm not sure if ES that is causing it or not.
I started a new job early Nov 2014 and I have a lot on my plate at this company and I'd like to do really well as it's a good job. I'm having issues with concentration and getting motivated and I'm lacking in mental energy and assertion. I've been trying to figure out why I've been feeling so tired and ill and don't want to seem like a drama queen / hypochondriac / mental case to all my colleagues.
I've been on the hunt for answers since the beginning of July 2014 in relation to ES. I've always been a very active and sporty person. I like to ride my bike to work and for the past 6 weeks I've felt too weak to do so.
Are you saying that the fatigue comes and goes? I don't really feel like my energy levels have increased much lately (6 weeks or so). I've been eating extremely healthily and thought that the fatigue was in relation to digestion issues or an endocrine problem (Adrenal or Thyroid).
I just want to get back to normal, do well in my job and start feeling like going out and exercising again. The most I can do it take a walk to the supermarket or drive for some lunch with my partner on weekends. Something has got to change!
I won't stop the hunt for answers and I will be seeing a specialist in the morning to speak about digestive disorders. I'm still hoping that the fatigue isn't due to Eagles. I can live with the feeling of having something in my throat, but I don't want to live with chronic fatigue after being such an active, healthy, sporty person. I want my life back!