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CFS or fibro? how do I know?

Discussion in 'General ME/CFS Discussion' started by fibrodude84, Jul 23, 2014.

  1. fibrodude84

    fibrodude84 Senior Member

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    I was diagnosed with fibromyalgia but my major symptom is severe fatigue. I have the other problems too but I can accept the pain if I just wasnt so weak and dizzy.
     
  2. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    There is a test using trigger points to dx FM. And fatigue is a major symptom of FM.

    There a slew of other tests you can get to try find out but a DX of ME/CFS is by exclusion.

    Other's here can give you more specific info.
     
  3. SOC

    SOC Senior Member

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    CFS is a wastebasket diagnosis that can include multiple conditions and many missed diagnoses. Unfortunately, there are a number of definitions, some of which include very different patients. It's a mess. :rolleyes: Depending on which definition is used, almost anyone can get at CFS diagnosis if they're more than usually tired.

    The illness we generally talk about here is defined by the ME/CFS Canadian Consensus Criteria (CCC) or the International Consensus Criteria for Myalgic Encephalomyelitis (ICC). These definitions both require the symptom which is called Post-exertional Malaise (PEM) in the CCC or Post-exertional Neuro-immune Exhaustion (PENE) in the ICC.
    Both definitions require additional symptoms in the neurological, autonomic, endocrine, and immune domains. You can read the ICC or CCC to see if you fit those definitions.

    Fatigue, even severe fatigue, can be the result of many different conditions. It would be wise to investigate treatable conditions that can result in fatigue before accepting a CFS diagnosis. You can find lists of exclusionary conditions in both definitions.
     
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  4. Tired of being sick

    Tired of being sick Senior Member

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  5. Tired of being sick

    Tired of being sick Senior Member

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    If you ask me,

    Fibromyalgia is just one symptom of CFS/ME.........
    Just like POTS is

    Most people with CFS/ME have Fibromyalgia and POTS....
    Fibromyalgia is where most of the myalgia/joint and tissue pain comes from..

    POTS is where most of the Post-Exertional Malaise , Fatigue and Neurological/Cognitive issues comes from..
    or in simpler words: (Heart pumping it azz off (were talking 120-200 BPM)trying to get enough blood to the screaming blood thirsty limbs and brain to no avail)



    CFS/ME is the mothership of these and the other 60+ symptoms.........
     
  6. fibrodude84

    fibrodude84 Senior Member

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    I honestly am so weak and dizzy it's hard to know if I have PEM because I always feel like I got hit by a truck and am so exhausted.

    I think it does make me worse but I would think anyone severely fatigued doing something would feel more exhausted.
     
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  7. Tired of being sick

    Tired of being sick Senior Member

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    Hey!!

    That's my line,

    You stole it!!

    just kidding,

    I always feel like I got hit by a tractor trailer and am so exhausted. when I wake up...
    Then
    I feel slightly better very slowly through the day
    Then
    when its time to go back to sleep at bedtime I feel my best!
     
  8. GracieJ

    GracieJ Senior Member

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    You mean the Mac truck that rolls through my bedroom at night, leaving me with no energy or vitality the next day??

    Update on fibro diagnostics. As of 2010, the tender points are no longer considered mandatory for diagnosis. They can be present but not always are, and a lot of people who did not have them but had, say, 60 of 65 symptoms for FM were falling through the cracks. I was one. I also have a client who ONLY had the tender points, and her gung-ho rheumy insists she has FM and has her nose out of joint over the patient "refusing" treatment with Lyrica, antidepressants, etc.

    @fibrodude84 Good luck with it all! Welcome to the forums.
     
  9. fibrodude84

    fibrodude84 Senior Member

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    I guess that truck gets around and terrorizes us all LOL.
     
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  10. taniaaust1

    taniaaust1

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    feeling weak and dizzy. I strongly suggest to see if you could get a tilt table testing done somewhere in case you have POTS.

    I personally dont agree with that statement. For myself POTS doesnt give me post exertional malaise (by that Im refering to the kind which kicks in long after one has stopped doing activity). POTS tends to hit immeditately, it is the ME which gives the post exertional symptoms which come in later on.

    I do find thou that a severe POTS episode places strain upon the body and hence can trigger off the ME side of things (thou that doesnt often happen to me).
     
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  11. fibrodude84

    fibrodude84 Senior Member

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    I was seen by an ENT who did a tilt test and he said I was fine. Something is very wrong though.
     
  12. SOC

    SOC Senior Member

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    Same here. PEM is entirely different from fatigue or exercise intolerance. OI made it hard for me to do a lot of things, but it wasn't the cause of PEM. Even after I got the OI under control and could do a lot more routine stuff without fatigue and light-headedness, the PEM still hits after the fact by several days if I exceed my threshold. The PEM is not just excessive fatigue. It's more like having a really, really bad flu.
     
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  13. SOC

    SOC Senior Member

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    That happens to a lot of us. One reason is that some of us don't have the most common form of POTS, or we have other types of OI entirely, so it doesn't show up on the basic POTS tests. One problem is that some of us have delayed symptoms, so if they don't test for long enough they don't catch it.

    I was given a TTT 6 or 7 years ago and told I didn't have POTS. For years I believed that and didn't seek further treatment. Last year I finally started treatment for OI and it made a big difference in terms of how I feel and what I can do routinely. I'm pretty unhappy that I spent all those years feeling worse than I had to.

    You might gain some useful information from reading this article here at PR and trying the Simple Test for Orthostatic Intolerance in it.
     
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  14. fibrodude84

    fibrodude84 Senior Member

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    The thing is I don't think it's OI because it's chronic and not just getting up but sitting too. I just feel off balance.

    I don't even know if it's worth dropping so much money on an expert to find out if it's CFS, fibro or both because the treatment is the same and barely any at that. It would be nice to know though what the hell is wrong with me.
     
  15. SOC

    SOC Senior Member

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    OI can be chronic. It doesn't just happen when you stand. Lots of us have OI symptoms sitting, and some even lying down. For example, many people with ME have low blood volume, which can cause problems all the time. One rough way to check for low blood volume -- it's not a perfect test, but it might give you a clue -- is to measure your first morning BP. If your pulse pressure (systolic-diastolic) is less than 30, and certainly if it's less than 25, you might have low blood volume.

    The treatments for fibro and ME/CFS are definitely not the same. A number of years ago many doctors thought they were the same illness and treated them the same. Now we know they are not and treatment can be very different.

    There are plenty of treatments for ME/CFS. None of them are a cure, but they can improve quality of life significantly. You can find out about a lot of them by reading here at PR. There are also some significant treatments for fibro that could help such as Cymbalta, Lyrica, Savella, physical therapy, for example. Exercise can also help with fibro, as long as you don't have ME/CFS also. Don't give up too soon. Life is too short to waste it being in pain and fatigued unnecessarily.
     
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  16. barbc56

    barbc56 Senior Member

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    @SOC

    I have both. How are the treatments different. Anti viral use? Interesting. I didn't know this.

    Thanks.

    Barb
     
  17. SOC

    SOC Senior Member

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    Lyrica, Savella, physical therapy, and exercise are treatments for fibro, not for ME. Antivirals, abx, and immune modulators are treatments for ME, but not fibro. I'm sure there are lots of overlaps in treatment. I'm no medical expert. The best way to find out the treatment differences are to do some internet research and/or talk to expert (biomedical) clinicians for both illnesses.

    It's got to be tough having both as some treatments that help one are contraindicated for the other.
     
  18. taniaaust1

    taniaaust1

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    As SOC said OI can be chronic too, I get it sitting as well. Hence I always need to sit with my legs up and my wheelchair had to have raised up legs.
     
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  19. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @SOC What did you mean if your BP is less than 30 or 25 than you could have low blood volume? Do you mean subtracting one number from the other or some other way to track it?
     
  20. taniaaust1

    taniaaust1

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    Measuring pulse pressure is done by substracting the dystolic (lower BP number) from the systolic (higher BP number).

    Those with ME can have "narrowing of the pulse pressure" mine can get as low as 7 (that's enough to cause a collapse in a person). I dont know thou at what point those numbers really matter. I think Dr David Bell used to say it shouldnt be less then 17?
     
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