FOR THOSE OF US WITH ME/CFS...

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Godismystrength, Jan 15, 2013.

  1. Every time I read a description of symptoms for ME/CFS, it always bothers me that they use the word "fatigue" as a main symptom when that word doesn't even BEGIN to describe what we go through. How can we hope to have others understand our illness when the list of symptoms sound so mild? (ie fatigue, sore throat, tender lymph nodes, muscle aches, etc)

    Instead of "fatigue", I feel like a more accurate description would be "extreme or profound WEAKNESS that may include episodes of temporary paralysis", "extreme lethargy and disabling fatigue"...

    I would be very interested to hear from those on this board with ME/CFS as to what your symptoms are and whether the current descriptions of our illness bothers you as well.

    For me, besides the above mentioned symptoms, my symptoms include:

    Dizziness... Severe headaches... Sleep problems... Poor appetite... Digestive problems... Shortness of breath/difficulty breathing... Extreme sensitivity to heat... Unrefreshing sleep... Muscle pain... Muscle twitches... Vertigo.... Problems with balance/equilibrium... Neurological manifestations such as feeling like your extremities are vibrating (DOES ANYONE ELSE EXPERIENCE THAT?)... Low blood pressure... Post-Exertional malaise... Visual disturbances... Diminished sense of smell and taste... Food sensitivities... Multiple chemical sensitivities... Hormonal/endocrine disturbances... Impaired memory and cognitive function, and ... Joint stiffness and pain.

    That is all I can think of at the moment (as if that's not enough!). I do have fibromyalgia as well, so some of my symptoms are attributed to FM.

    But I would really like to hear from all of you who suffer with ME/CFS and get your input. I know we all have differences in how this disease affects us, so I would really like to get your feedback.

    Maybe we can make a difference in getting the description of our illness to be more accurate, which will help in getting others, including doctors and healthcare workers, to better understand our disease.

    Thanks so much!

    Blessings and Gentle Hugs,
    Shel :)


    [This Message was Edited on 01/16/2013]
  2. neoplus1

    neoplus1 Member

    I have Fibromyalgia and ME/CFS.

    Exhaustion, weakness, pain of the extremities, yes the vibration sensation as well as other sensations such as cold, heat, restlessness, internal tremor, etc.

    I have head+neck pain, swollen tender lymph nodes, flu-ish feelings which include the all over aches and pains(different form the other fibro pain I have), dizziness, and occasional vertigo(although usually after consuming Omega-3 fats).

    Tightness and pain in the mid/upper back, abdominal soreness, abdominal tightness, and feelings of pressure in the abdomen that extends upward towards the thoracic area.

    Problems with concentration, memory, jumbled thoughts, and just plain mental fatigue.

    Post-exertional malaise and crashing.

    I may have left out some things, but that is the bulk of it. Some of these symptoms are not severe but their presence makes life more difficult on top of the more dominant symptoms. Although I didn't add them as symptoms, Depression and Anxiety often accompany these conditions.

    -Steve
  3. ...for sharing your symptoms. As you said, some symptoms are more dominant, and some we don't deal with every day. I think for most of us, the profound weakness coupled with the dizziness and lightheadedness we experience when standing are some of the most challenging symptoms we have to deal with...

    Anxiety and depression can certainly be an issue when suffering such disabling symptoms as we have to deal with. For some, medication helps with that... For others, like myself, our faith helps keep anxiety and depression from getting a foothold and becoming a problem. But either way, it must be addressed... Because if not, the depression and anxiety will make our symptoms worse.

    Steve, how do you deal with that issue, if you don't mind me asking? And how are your other symptoms lately? I hope your symptoms are better these days...

    Blessings,
    Shel :)

  4. neoplus1

    neoplus1 Member

    I don't mind you asking at all :D

    For depression, mine tends to be more on the mild side. I have hit lows for sure, but not too bad overall.

    For the past few months I have been practicing Qigong, Buddhist Vipassana Meditation, diet, vitamin d, vitamin k2, coconut oil(as part of diet), and VERY light yoga and stretching.

    These have helped with the anxiety and depression. I also have been doing a bit of studying about the Buddhist philosophy to perhaps gain perspective on suffering and that has helped with the emotional side of things.

    I would say overall the Qigong, Meditation, yoga, diet, Vitamin D+Vitamin K2, and coconut oil. have been helping. Over the past few months I have seen improvements little by little.

    Two weeks ago I had a flare which I realized I hadn't had one in over a month before that. The flares usually occur weekly or biweekly and last many days. This one lasted 1 and 1/2 days.

    I have had improvements in a lot of the symptoms such as pain, tremor, restlessness, head+neck pain, being reactive to things(foods and supplements), some improvement in dizziness, and some of the cardiac symptoms such as palpitations and rapid heartbeat.

    The exhaustion isn't being helped as much, but I didn't start to notice any improvement until about a week and a half ago.

    Any and all improvement has been SLOW. None of it has been sudden except I may suddenly realize in retrospect that I have been doing better. I don't want to give the impression that I am SOOOOO much better, because I am not. I still wouldn't be able to work or go back to school. However, it does seem that my condition is moving in that direction.

    It could also be that I am just naturally getting better as well. I am only 27(turning 28 this year), and my condition was slow and progressive onset. I could be on the other end now slowly getting better regardless of what I do.

    You may notice I don't take many supplements. I was jumping around too much with supplements and doing it too frequently it was hard to tell what was doing what.

    I decided to stop anything and everything and keep it simple and SLOWLY modify what I was taking over time. Vitamin D and Vitamin k2 are important, so I started with those. Then I added coconut oil to my morning meals and that actually helped with some energy.

    Next I will be adding whole ground turmeric with a minimum of 4% curcumin to my daily diet and work up the amount I consume. It is possible to get high levels of curcumin from diet depending on the concentration in the turmeric.

    Eventually I may start methyl-b12 and methyl-folate with lecithin. All of this depends on how things progress. We will see.

    I am sure there are things you have never heard of or heard of but haven't tried. As long as there are those things, there is still hope. Who knows, maybe some things you have tried in the past may have a different effect now.

    I really hope you feel better. I know all of this is heavy on you. Don't stop looking for help. Don't give up hope.

    -Steve
  5. jaminhealth

    jaminhealth Well-Known Member

    sound like yeast/candida issues...have you addressed that.

    I don't deal with CFS but have a lot of the issues you mention, pain and inflammation for sure...

    I don't think i deal with yeast overgrowth per se, and if you would like to hear what I do, let me know and I'll post on that....jam
  6. MicheleK

    MicheleK Moderator

    I'm not feeling that great so I won't give a list of symptoms. Symptoms come and go and are always changing but one thing that is most often present is the "fatigue" which I refer to as "cellular exhaustion".

    A number of patient advocacy groups, one of which I am involved with, are working with the CDC to try to get the generic term "fatigue" changed. Also the distinction between the word "tired" which people usually interpret as "sleepy". We are not "sleepy", we are absolutely exhausted on a cellular level.

    The word "malaise" too is a thorny issue. "Malaise" almost sounds pleasant.