Discussion in 'Fibromyalgia Main Forum' started by tig519, Mar 28, 2010.

  1. tig519

    tig519 Member

    I'm curious, for those of you that have been diagnosed with BOTH, which was diagnosed first? Are you sure you do indeed have both and how do you define the symptoms that define each?

    I've done quite a bit of research on this, although I will admit, not very scientific. I have interviewed many people and doctors whenever I'm presented with the opportunity. Just like these boards, it's another way of possibly learning something new. I travel a lot so I actually have many possible opportunities to discuss. I don't try to hide my symptoms (not that I could) from customers or my employees, and it's inevitable that someone asks why I wince when I stand up. I will generally just say I have FM. One things leads to another and you'd be amazed how many people know someone who has FM (or CFS). Even in those conversations, I can't tell you how many people think they are the same (they don't have, but knows someone who has one or the others). I'd say about 70% think they are the same illness.

    Anyway, my other observation is that many people have been misdiagnosed Because their primary doctor didn't want to do a lot of tests (or insurance didn't want them done), many lumped them into CFS. I was one of those, but understand why that was the diagnosis at the time (1984). All the symptoms fit at the time and I had just gone through a flu like bout at the time. I didn't have anywhere near the pain I have now. I'm thankful for that dx, because it caused me to research everything I could (library back then) and caused me to change my diet and eliminate most of the artificial things in my life. The item that didn't fit was the pain and the extreme insomnia. I could not sleep without some type of aid. I found sleep to be key if I wanted a chance at a good day.

    flash forward 20 years and I just could not stand the pain, and my OTC sleep aids were no longer working. My primary doctor (different than 1984) sent me to a rheumy. I was then dx as actually having FM (after a full history taken and some tests). I asked if that meant I had both CFS and FM, and my rheumy said no. She told me that although some symptoms cross over, the causes are different and therefore the treatment different. Not to say it's not possible, but she is the one that informed me that many people were misdiagnosed with CFS. Not just as it relates to FM, but also Lyme Disease and other possibilities. Again, her opinion, but it makes sense.

    I believe that FM is caused by something that causes our brains to be overactive. I believe that's why I have gerd- because if my nerves are overactive and my brain is overactive, why shouldn't my stomach be overactive and producing too much acid? I believe I can't sleep unless I take something that turns my brain off, so that I can relax enough to sleep. I believe I'm actually good at my job because I can truly multi-task (if I avoid drugs during the day that cause fogginess). I believe my pain is so unbearable at times that it brings down my whole body to the point of wanting to stay in bed all day. Even if I take a drug that numbs the pain... it is pain non-the-less for my body and my body can only take so much until it crashes.

    I believe CFS is most likely caused by some sort of virus that stays with you. Sort of like Mono-like thing. Something that can be more active at times than others. There may be good days and really bad days. I know there are issues with sleep and obviously overall fatigue that can lead to other major issues. I just don't have personal experience with these, so I won't try to list.

    Although both can benefit from some common things, I believe they are things that would benefit anyone. Things like going organic. Looking at supplements that can counteract some of our symptoms vs taking prescribed drugs, especially ones that make us "foggy."

    I believe the root treatments are quite different.

    I guess my whole point is that people's good intentions on responses to posters as to what someone should take or try is not segmented by CFS or FM. This can cause confusion and possibly adverse reactions or waisted money and time.

    If the boards can't be split, I would ask that people identify what they have in their original post to help alleviate the issue.
  2. Nanie46

    Nanie46 Moderator

    I do believe that the cause of these illnesses is infectious.

    Many people here have later found that they had a chronic borrelia burgdorferi infection (lyme) and other common coinfections like Babesia, Bartonella, Ehrlichia, etc.

    Babesia is known for causing overwhelming fatigue, migraines, sweats and air hunger...but not always.

    Lyme commonly causes fatigue, pain, and cognitive problems, among many other symptoms.

    Bartonella commonly causes enlarged lymph nodes and anxiety or depression.

    I too thought my illness (FM) was caused by a virus for 21 years.

    Finally I opened my mind to the possibility of lyme and coinfections and found that I had it despite negative tests.

    Now I am getting treatment and improving....after 22 years. Same thing happened to over a hundred other people from this board.

    Please read this important info....

    symptom list p 9-11 and coinfection symptom info p 22-27.....
  3. shari1677

    shari1677 New Member

    I was diagnosed with FM about 5 years ago. Pain was my major symptom. Fatigue was second, though I was still able to work and live a somewhat normal. life.

    About 2-1/2 years ago, I ended up in bed for 6 weeks (fatigue), then short-term disability for 6 months. I have never been the same. I spend about 95% of my time in my PJs.

    My doc says that FM and CFS are the same - I disagree. I believe I "came down" with CFS 2-1/2 years ago.
  4. Aberlaine

    Aberlaine Member

    I was diagnosed with FM eight years ago. More recently after researching it, I think I have Lyme Disease. But how do you get diagnosed when your doctor has already run the Elisa test which has come back negative?

    The biggest problem with all these illnesses is the lack of belief by our doctors. They just don't want to be bothered with us when they've already run a test that's come back negative.

    I know I also suffer from hypothyroidism. But my TSH test comes back "normal" so my doctor refuses to increase my medication. I've gone to an endocrinologist who told me the same thing - I'm normal.

    Where do you go to get the correct diagnoses?
  5. Nanie46

    Nanie46 Moderator


    99% of Dr's do not understand Lyme disease, a complex bacterial infection.

    You really should find a Lyme literate MD (LLMD) for a good evaluation for Lyme and common coinfections like Bartonella, Babesia, Ehrlichiosis, Anaplasmosis, etc.

    It is a huge mistake when Dr's rule out lyme with only a blood test that misses most cases of lyme disease.

    Dr Burrascano, a lyme expert, writes on page 7 of this very important paper, that the ELISA is worthless. Even western blots can miss alot of cases of lyme disease...

    Lyme should be diagnosed clinically...means that it should be based on medical history, symptoms, exam and labs.....not just a lab test.

    You can find a LLMD by going to on flash discussion....sign up for on the Seeking a Doctor on Post a New Topic and ask in the Subject line for a LLMD in your state.

    Then after you do that, click on either Forum Home or Questions and Discussion...that will take you back to the flash discussion page where the different boards are listed.....Click on the Medical Questions Board and read posts and post your questions.

    All the boards on lymenet are for lyme patients...there is also General Support, Activism, etc.

    There are tons of helpful and intelligent people there who will help you.

    I look forward to seeing you on where I am Dekrator48.

    Here is some more info about lyme and common coinfections:

    Good luck!!

  6. ellikers

    ellikers New Member

    I had CFIDS first, diagnosed in 2005, but with "fibro-like symptoms" according to Nurse Practitioner's notes.

    Then diagnosed with FM spring 2010, after CFIDS issues had gone away with a lot of hard work, medication, supplements, etc.

    And folks, I realize that a lot of people have undetected viruses that cause their CFS/CFIDS, but that doesn't mean everyone's was viral or from a stealth pathogen. There can be many causes.