New here: My life:story - Warning: some nasty language due to frustration.

Discussion in 'Fibromyalgia Main Forum' started by pro_photog1970, Oct 1, 2008.

  1. pro_photog1970

    pro_photog1970 New Member

    If there is one thing about this condition, the conveniently misnomered "Chronic Fatigue Syndrome" (It should be renamed Myalgic Encephalmyelitis) it's that when you're fatigued and you over-do really end up feeling like crap. I feel nauseous; practically sick to my stomach and I've got little tingles in my arms and palms of my hands. It's hard to describe. What I end up feeling is that I have no energy at all to do a damned thing with. And on top of that it's frustrating when someone asks me to do something and I don't even have the energy to complete one single task and then I get really pissed off when I get b*ed at "for not getting what" they "want done". Well, it's really tough when you want to get something done, but your body just doesn't want to co-operate.

    And I've gone from doctor to doctor and they just want to keep doing blood tests. And I find the more I end up getting blood taken from me, the tougher it is to bounce back. There's been times when I've been incapacitated for days on end. And what's even more frustrating is the fact that this month is one where I have to get as much done as I possibly can with regards to packing. I have NO choice whatsoever. I have to do whatever I can to the best of my ability and wear myself out over this next one and a half weeks and get this done so that I can get enough rest before the move and completely get it over and done with.

    I'm a photographer by trade and unfortunately, my business has gone to part-time because when ever I do a shoot, I'm wiped for two-three days after. Even on my best days, I'm walking around in a daze because I'm still pretty damned tired. I have pain in my forearms. I am lactose intolerant. I drink milk and I feel like I'm about to puke or I get a stomach ache. I've had to drop out of a web-design program because I can't think. The only reason why I can seem to keep photography knowledge: regarding f/stops and shutter speeds straight in my head is because it seems to be intuitive knowledge. I've done this pro-quality work without having to pay money to take a course on it. The last time I had to take a course on photography, I gave up because the instructor was confusing the hell out of me. Anything that involves studying doesn't help me much at all. The muscle pain and the fatigue are the most irritating symptoms out of this problem. And yes, there are days that I've been unable to move from the bed, because I've been so tired and in pain. Three years ago, I took a fall down a set of steps and impacted my back in three places, no bones were broken but there's been nerve damage and that has exacerbated my fatigue and pain symptoms. There are days when I ache all over, not just from the ME, but from the symptoms related to the fall as well.

    I've been bounced from doctor to doctor and they just keep doing blood test after exclusionary blood test because they can't seem to friggin' believe that there is no diagnosis. I seem healthy by all my blood tests yet they can't figure out why I'm in pain and why I'm fatigued. Or maybe it's just because they're not doing the right blood tests. And what really pisses me off is that they tell me "Oh, maybe you're just imagining it." Yeah? Well, how about living in my body for a day or two, maybe a week...and then tell me if I'm imagining things? I've been living with these symptoms for well over 24 years (ever since I had the measles at 14) and they just seem to be getting worse, at least the fatigue symptoms, the pain and the "brain fog" that I seem to be constantly in.

    My list of symptoms:

    Mental ('cognitive') difficulties such poor concentration, reduced attention span, poor memory for recent events, difficulty to plan or organise your thoughts, difficulty 'finding the right words' to say, sometimes feeling disorientated.
    Sleeping difficulties: Too much sleep, too little sleep, and definitely UNABLE TO SLEEP.
    Pains - most commonly muscular pains (myalgia), joint pains, and headaches.
    Intolerance to foods: Lactose Intolerant, and I'm also intolerant of bright light and loud noises, it jars my senses.
    Gut symptoms similar to those that occur in 'irritable bowel syndrome'. For example, excess, wind, bloating, alternating diarrhoea and constipation, abdominal pains, nausea (feeling sick).
    Gut symptoms similar to those that occur in 'irritable bowel syndrome'. For example, excess, wind, bloating, alternating diarrhoea and constipation, abdominal pains, nausea (feeling sick)

    Now, Health UK (and I'm reading this off of there) has stated that my symptoms (based on my self-assessment of them (due to personal experience) are of the mild variety and considering what I have stated in the above paragraphs, it's pretty accurate.

    you can care for yourself and can do light domestic tasks, but with difficulty. You are still likely to be able to do a job, but may often take days off work. In order to remain in work you are likely to have stopped most leisure and social activities. Weekends or other days off from work are used to rest in order to cope.

    And as a result of taking time off: I ended up fired from work because I missed too many days sick becaues my immune system was compromised. I've come down with many respiratory illnesses since my bout with measles. (bronchitis, strep throat, etc etc etc). Now whenever I walk down to Superstore or Safeway, or if I walk up to my wife's work (which is a fair distance away (try about 4 miles), I'm wiped for damned near close to a week and the first two days, I can barely get out of bed.

    I'm tired of feeling this way and I want a definitive diagnosis if I can get the medical community to quit jerking me around and treating me as if I have some sort of psychosomatic/mental disorder.
  2. 3gs

    3gs New Member

    I feel your frustation.

    would think by now docs would get with the program.
  3. Queen of the Dream

    Queen of the Dream New Member

    OK pro_photog is my husband and he's asked me to "edit" his earlier post. He also has dizziness related symptoms and other things such as: A range of other symptoms have been reported in some cases such as dizziness, excess sweating, difficulties with balance, and disordered temperature control of the body.

    In fact I used to wonder with his temperature thing if he has thyroid issues because my mother has thyroid problems which she takes replacement hormones for and a lot of the temp thing reminded me of her. But as with everything else, his TSH levels are fine.
  4. kitteejo

    kitteejo Member


    We've all been there. The problem with CFID is that there is no test that we can take to make a diagnosis. The rule for doctors is to rule out everything else first and than conclude that it is CFID. Your going to have to ride out the testing to get the diagnosis.

    I first became sick in 2003 and was tested, tested, tested.
    Sent to every type of specialist there is and then they tested me and not just blood tests. Many MRI's, neurological testing etc. When nothing was found that is when I got the diagnosis.

    I worked for three years which was very difficult and finally had to stop. You sound like your younger than me which will be harder to take the DD (damn disease).

    When you have CFID you CAN NOT push your self, as you will only crash. This is known as the push and crash cycle. We've all gone through it. You, as we all do, have learned to pace our self's. You can do a little bit and than you rest, do a little bit, than rest. It's a pain but it will be your new way of life, unfortunately.

    Some people here have found supplements that help them, none have worked for me. Your young so I would give them a try.

    There are CFID specialist out there. I have an appointment for the one in Michigan and who knows maybe it will help. His name is Dr. Lerner and does have a Web site.

    My advise to you is to read and research.

    If your having pain you need to see a Rheumatologist. You may have Fibromyalgia also.

    Do to all of our crazy symptoms, you may end up depressed so be careful with that, you may need medication for that.

    To your wife, your a wonderful lady to be so supportive. That is the hardest part of this DD, no one understands what is going on with us. We look normal, we look OK, we get told to just get up and move, you'll feel better. Please continue your support to your husband and don't ever give up on him. His symptoms are real.

    If you need support or have any other questions just write back, I check in all day while I sit here in my chair with nothing much else to do.


  5. monicaz49

    monicaz49 New Member

    I appreciate your very real story. It helps to get out your aggression in words sometimes. I feel your passion and frustration so very much. I have many many issues as well so I can relate to what you are saying. I am lactose intolerant now too!
    And yes, a definitive diagnosis would be an answered prayer(if not a cure). Just validation from the medical community which will trickle down to the community and our family.

  6. pro_photog1970

    pro_photog1970 New Member

    Thanks for telling me your own situation. It's always good to hear that you're not the only one. I've been reading and researching and this time when I go to see the doctor I'm taking my entire medical history file with me after I wrench it free from the doctor's I've gone to see.

    As I said though I'm probably going to have to go through two more "crash and recover" cycles. We're moving from a lousy 250 sq ft. SRO (single-room occupancy) to a 3BR 1.5 bath townhouse at the end of this month. And I'm hoping that I'll get some help with the packing and moving but I'm not holding my breath.

    I tend to look on life with a kind of a "George Carlin" point of view...acerbic so that's probably what has kept me sane for the past few years of this up and down exhaustion. What was tougher was when I was single and living with my parents who thought for the most part that I was "lazy".