I'm confused; CFS or FM?

Discussion in 'Fibromyalgia Main Forum' started by Hinemoa, Jul 27, 2003.

  1. Hinemoa

    Hinemoa New Member

    I am confused, (no surprise there). I was diagnosed with CFS about 20 years ago but in the intervening years I have developed significant symptoms of FM.

    I know it is now widely recognized that CFS and FM are... two ends of the spectrum of one disease? but is it common to develop one after another like this? And is it important to try and bring the doctor up to snuff with the two? Should we just address the symptoms as they occur? Sometimes it seems so, so... I don't know so..lost the word...to keep saying, "Oh by the way, I have this and this and this." I took a list of symptoms to a new doctor once and he wrote in my chart that "I had a laundry list of unrelated complaints and every allergy known to man."

    I was born a New Zealander but I'm thoroughly sick of the 'stiff upper lip' and 'it's just not on to complain, old chap.'

    Does anyone else feel the need to constantly validate their right to be ill...to themselves! My family on the other hand, is completely convinced that I am sick.

    Should I post this? Yes I rather think I shall. It's a bit exposing to send thoughts like this into the ether though. Blast, I sound like a complete ass.

    Oh well, you ARE the most understanding group!

    Thank you,

    Sandra




  2. Mikie

    Mikie Moderator

    I believe that many of us have both, diagnosed or not. You must have 11 of the 18 tender points and they must be distributed in all four quadrants of the body. They cannot all be above the waist or below the waist, and they cannot be only on one side. This is a totally arbitrary criterium but is one which must be met to be "officially" diagnosed as having FMS.

    I've been sick for 12 years and only have had the tender points for a 2-3 years. Now, on the Guai treatment, they are going away.

    There is a lot of overlapping of symptoms, but some of mine definitely fall into one camp or the other. I am treating the symptoms of each differently.

    Love, Mikie
  3. Hinemoa

    Hinemoa New Member

    You are the calming voice of reason.

    I do have tender points but I'm not sure if I meet the strict criteria. I get FM chart and check it out.

    Thank you.

    S.
  4. Hinemoa

    Hinemoa New Member

    I would love to have your list. I have several books but most concentrate on CFS. The doctor I mentioned moved and I have a new internist. His field is mainly endocrinology but he is sympathetic and understanding and though he admits to knowing very little about CFS he says is willing to learn and will continue the meds my original doctor had me on.

    Best of all...He listens!

    I will send you my e-mail address.

    Love,

    Sandra
  5. Shirl

    Shirl New Member

    Believe me, you do not sound any different that the majority of us do.

    I have been diagnosed with FM for over twenty years. The only symptom I have that is like CFS is fatigue. But I only get this infrequently and it does not last more than two to three days. So I would say that I do not have CFS, doctors have never mentioned CFS to me.

    I had to laugh at that laundry list your doctor mentioned, thats one of my husbands favorites to tell me. He also says that I 'have one pain', it just travels all over my body'..............

    Yes, I have to remind myself I am sick, its just that when we feel good, we really hate to admit that we are actually suffering from some kind of strange illness that no one seems to be able to understand correctly.

    I am always telling my family, I am not sick, I just have a lot of pain! I have had this so long, but till yet I do not 'think' in my mind that I am actually sick, sick. Does that make any sense????

    Feel free to air your thoughts on this board, all of us do. Sometimes it truly helps.........

    Shalom, Shirl
  6. Hinemoa

    Hinemoa New Member

    people who speak the same language, thank you Shirl.

    I think that it's because this disease has been denigrated to such an extent that our self-esteems have been eroded and we end up doubting ourselves.

    My original doctor, who was probably exasperated, told me that he was going to tattoo, "I AM SICK" on my forehead... backwards so that I could read it when I looked in the mirror.

    Again, it's lovely to meet you,

    S.
  7. BILLCAMO

    BILLCAMO New Member

    GLANCED THROUGH YOUR INFO....... TOO BAD YOU ARE IN FL. YOU DESERVE A REWARD OF ELK MEAT (BURGER & STEAK )....I'M A NEWBIE....... WHAT IS THE GUAI TREATMENT YOU WROTE ABOUT ??? (IF MY BRAIN FOG SPELLED IT RIGHT ). THERE ARE NO SUPPORT GROUPS CLOSER THAN 75 MILES NEAR FROM WHERE I LIVE....MIGHT AS WELL BE A 1,000....... I HAVE CFIDS , POSSIBLE FMS , IBS , & OTHER "FUN" CHALLENGES...... NOT MUCH HELP WHERE I LIVE... I TRUELY WISH THERE WAS SOMEWAY I COULD SEND YOU 1 OF THE ELK STEAKS I'M BBQ'ING TONIGHT..... YOU DESERVE IT...... IF YOU SMELL THE STEAKS , THE FRAGRANCE IS COMING FROM WA. ST..... BLESSINGS & TAKE CARE !!!!!! BILLCAMO. P.S. PLEASE DON'T FEEL UNCOMFORTABLE... LONG BEFORE I BECAME ILL , I BELIEVED IN RANDOM ACTS OF KINDESS ... RATHER THAN SENSELESS ACTS OF VIOLENCE...... IF THERE WAS SOME WAY I COULD ACTUALLY SEND YOU ELK MEAT,.... I WOULD..... MUCH BETTER THAN BEEF !!!! IT WOULD BE A THANKS..... NOT FROM ME , BUT FROM ALL THE PEOPLE YOU HELP......(SOMETIMES I THINK BEING PARANOID IS PART OF THESE DDS). THE ONLY REASON I HAVE ELK MEAT IS BECAUSE MY BEST FRIEND & HUNTING BUDDY I HELPED GET INTO ELK HUNTING , FEELS MY PAST INPUT HELPED HIM , HIS SON , & BROTHER SCORE LAST SEASON..... I COULD'NT HUNT MUCH.... I ACTUALLY HAD A CHANCE @ A LEGAL BULL , BUT MY ILLNESS FORCED ME NOT TO TAKE THE SHOT.... I STILL BELIEVE THAT WAS THE BEST DECISION. BETTER NO SHOT THAN BAD SHOT....
    [This Message was Edited on 07/27/2003]