My rant

Discussion in 'Fibromyalgia Main Forum' started by celina, May 8, 2003.

  1. celina

    celina New Member

    I can't seem to comprehend this DD. I have had all the little pieces of it for 10 years, but when they happen all at once it's a disease. And there's no explaination. A broken arm is a broken arm, you probably fell down stairs. Depression is depression a permanant haze of tears and denial. fibro is...........................? A whole mix of things that attacks different people different ways, it hurts and makes me inable to move, but later in the day, I can water the lawn and watch the kids outside. Mornings aren't the worst for other diseases. Lunch isn't bad if you have an earinfection, just because. AHHHHHHHHHHHH. Everyone thinks I'm nuts, because everyone doesn't sleep enough and their sore in the mornings, they make themselves get up, if i make myself get up, i'll fall right back over in to a ball of screaming pain. I can't control this, and the different drugs are going to drive me loonie. Anti-deppresants, pain-killers, muscle-relaxants, sleeping pills, more pain-killers, vitamins and teas and diet.AHHHHHHHHHHH!!!!!!!! I think I'm going to lose it. What this hell is this disease other than an uncurable pain in the ass and a crowd-confusing dart of misguided doctors and health-care proffensionals.AHHHHHHHHHHHHHHHHHHHHHHHHH. Celina
  2. donna13210

    donna13210 Member

    I agree wholeheartedly! It is SO frustrating. Every article I read says "THIS" is what you should try, "THIS" got the best results. I get all excited, spend a bundle trying "it" and it does nothing.

    I could scream along with you!

    You forgot one thing....how "well" we look while fighting this DD! I've always said if you don't have the "Big C" or have open, oozing wounds, people tend to believe you're not really sick.

    Do what you can, Celina. And hang in there, that's all we can do!

    Take care
  3. billiegail

    billiegail New Member

    I just thought I'd scream too!
    That feels much better!
    Thanks
  4. layinglow

    layinglow New Member

    I know how frustrating these DD's are. If you look at the whole thing it is overwhelming, it does feel as if as you say you can't control it.

    May I make a suggestion? Write your symptoms down---all of them----putting the worse symptoms at the top of the paper.

    Take the first two----research on what causes these symptoms, and what alleviates or reduces them. Your choice whether RX meds, herbs/supps/vita. I have to take a combination for my individual treatment.

    Work on these two symptoms, researching, and experimenting with treatments.

    When you succeed, move on to the next symptom, and so forth.

    You must introduce things slowly and give them time to work, so this is not a get well quick.

    This makes these Disorders much less overwhelming--and it also removes frustration because you are taking control, and being proactive.

    This does work. There may be stubborn things, I have some on my list still---but I am working on them. I have accomplished alot. This removes that frustration, as you see yourself making progress.....

    Here is the other important key----do not waste one minute or one dollar on "misguided doctors" as you call them. They are adding to your frustration, and stress, which in these DDs makes the symptoms worse.

    I think sometimes we just get on this bandwagon of what everyone else is using or popular treatment regimes, and start taking so many things at one time....we cannot possibly ascertain what is and is not working for us.

    It is imperative to find a Doctor who is a specialist in FM/CFS, who keeps abreast of the latest research, has a large enough client base of suffers of these DD's that he/she has lots of experience and knowledge accrued, one who genuinely cares, and wants to TREAT you, and feels the same pride and contentment as each symptom is addressed and removed or significantly eased. I use a D.O, as they are able to prescribe RX'es, and also are very well informed on vitamins, supps, herbs, nutrition, and alternative treatments. Mine is much more affordable than the conventional docs I was seeing who were charging me on the average of $120./5-10 mins. I see my Doc for 30 mins/$60. or 45min/$80. I am receiving TREATMENT now, whereas before I was just receiving what you describe---Frustration.

    You are right, it is a whole mix of things, systems in the body that have gone awry. There are people getting better though. No cure---but definite improvement with treatment....addressing and repairing the individual downed systems. These treatments vary greatly--individual treatment regimes....as we all respond differently to meds and supps...and what works for one , doesnt always for another. There is hope to end your frustration.

    LL
    [This Message was Edited on 05/08/2003]
  5. lorgirls

    lorgirls New Member

    I get so damn fed up. Was in a flare all last week had a day of relief now in a worse flare this week. I feel like throwing away all my med and saying to hell with it all! Ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!
    Ok,feel a little better now,,,lol,,,,,,,,,Lori
  6. tansy

    tansy New Member

    sometimes silently at other times out loud, we all need to vent.

    Layinglow has given you excellent advice.

    Prioritise the symtoms that are having the worst effect on you and address them one by one.

    Research.

    Use this board to find out what others do.

    Think about what YOU think will help your particular problem in the way you think is right for your body.

    Try it out but take things slowly and gently eg one thing at a time and start on very low doses.

    Finding a good doc will help too.

    Good luck

    Tansy
    [This Message was Edited on 05/09/2003]
  7. baybe

    baybe New Member

    You have it nailed, maybe this is the letter to send to the politicians,lol
  8. kerrymygirl

    kerrymygirl New Member

    I have seen so many patients,when I could help out at clinic. Try this try that. MLM`s this will cure you. I have been in many test studies,research etc. for yrs. Once or twice I thought I was on the road to recovery. One major barometric front moved through "BAM", Gee I sound like That cooking guy? Disappointment, vertially my life savings now I have very little to live the rest of my life off of. Like you said this herb, that tea,diets, this drug all bandaids if you make 1 mistake or something in the air etc. The vacation I could have taken I cannot even think about. I could have hired my own live in help and massage therapist. We thought at the clinic someone was doing so much better, then we get the dreaded desperate call---HELP ME! Every doc or person has a different view. YIKESSSSSSS

    BTW I forgot my diet, herbs, vita`s,just usual meds. I got the same relief till I over did it. Ijust got fed up & 1 day I was out and had all this renewed energy, go figure???

    I have to use my insurance which only 1 doc that even assepts fm,he has along way to go,of no real help.I need a lyme doc & none for me to go to on my insurance. So it is not always that easy.