Those who feel they "inherited" FM/CFS/ME...

Discussion in 'Fibromyalgia Main Forum' started by SleepyMama, Feb 20, 2007.

  1. SleepyMama

    SleepyMama New Member

    While responding to other topics it occured to me that it might not be a bad idea to poll you on my theory.
    Myself, my mother and my brother all have CFS or "mystery seemingly related illness". My Grandmother also seemed to have similar issues.
    My son, on the other hand has Leigh's disease which is a very serious (terminal) mitochondrial disorder. I have read from a couple of sources (one of which is "From Fatigued to Fantastic") that a possible genetic factor in CFS could be related to mitochondrial disease.
    Mitochondrial DNA is inherited from the mother's side of the family. It passes unchanged (with the exception of spontaneous mutation) from mother to child.
    I'd like to know: Q1 If you beleive you have inherited suceptibility to CFS, did it come from a maternal line (Only your mother's, mother and so on....your mother's father, for example doesn't count.) or paternal?
    abd: Q2 Do you know (or are you) a man who seems to have passed suceptibility on to their children?
  2. ravenpaige

    ravenpaige New Member

    Sleepymama,

    See my post under the "CFS infectious" thread. I'm not sure if this supports your theory or not, or if it really doesn't matter, but I do think it is strange that my father has successfully fought off non-hodgkin's lymphoma twice over the course of about 40 years.
  3. Lichu3

    Lichu3 New Member

    My father (now deceased) had an odd severe fatigueing illness in his late 30s which lasted a year (before he met my mom). And one of the men (who recovered in 3 yrs) in the Recovery from CFS book by Alex Barton had a son with what sounds like a mitochondrial disorder as well. There are also people in the recovery book with sisters, daughters and one son with CFS.

    You are correct though in saying that mitochondria normally is inherited maternally so some of this doesn't make much sense.

    It may be that one disease under the heading of CFS is inherited whereas other people have some other disease also covered by the symptoms of CFS but which is not inherited.
  4. Slayadragon

    Slayadragon New Member

    My maternal grandfather had a mystery disease acquired suddenly that caused him to have to leave the Naval Academy and then to live a limited life thereafter. He died in 1984 and thus wasn't diagnosed as having CFS, of course. Based on everything I've been able to find out, it seems that this was what he had though.

    My brother got what was diagnosed as depression (even though he said he didn't feel depressed and didn't respond to antidepressants) in 1987, at age 15. He has led a secluded life ever since. His symptoms are almost exactly like mine would be if I hadn't made a strong effort to chip away at some of my problems (e.g. yeast).

    My mother has what might be called "CFS-lite," meaning she is able to work full-time but has little energy for anything else. (Dr. Bell has stated that children of parents with CFS often have either CFS or what he just calls "chronic fatigue" themselves.)

    My grandfather's parents do not seem to have had energy limitations. Neither did his sister.

    My mother was an only child.

    I have another brother and a sister who (as of yet) do not either chronic fatigue or CFS.

  5. SleepyMama

    SleepyMama New Member

    Thanks for the info. I do understand that mitochondrial disorders can be inherited a variety of ways. I didn't get into that at the head of the topic because I didn't want to write a confusing novel before asking people a question lol. It was said that my son "probably" has an autosomal recessive inheritance, but we do seem to have these problems all on my Mom's side of the family (My Dad's side are just drunks, no excuses there lol).
    I would like to get a biopsy done....to satisfy my curiosity if nothing else. I don't know if a co-Q deficiency test would turn anything up. My son was quite near death and undiagnosed and turning up normal results on everything they tested before finally being dignosed based on his symptoms and having a biopsy done. (Further specified to Leigh's after an MRI) Something about his body compensating for everything so it looked normal (I suspect that has a lot to do with why there's no test for CFS....our bodies are putting out so much compensating that we suffer symptoms without chemical changes)
    I don't know how to get them to test me for anything. I deal with the top geneticist here for my son and she's already seen me and made up her mind that our illnesses have nothing to do with each other. She also runs the hospital where I'd be going for all the tests. (I'm already flippin' mad at her for "forgetting" to send out prescriptions for my son twice, resulting in RAPID progression of his illness and permanent disability)I feel like I'm just too tired to deal with her.
  6. SleepyMama

    SleepyMama New Member

    Wrong thread maybe?
    *edit- Nevermind I figured out where that was coming from.
    [This Message was Edited on 02/20/2007]
  7. wrthster

    wrthster New Member

    My mother's grandfather had terrible arthritis. My mother has just IBS. I guess I was the lucky one (LOL)! As far back as I can remember into childhood: extreme mold sensitivity, terrible allergies, poor concentration and attention, eye hand coordination problems, endocrine issues, and terrible insomnia all as a child. Only got worse from there. So I am 100% convinced heridity plays a huge role in this aweful disease along with environmental triggers that set off the genes!
  8. desertlass

    desertlass New Member

    My mother has been well enough to work all her life, have a busy social life, enjoy hobbies, etc. but every now and then she comes down with the symptoms that I have more frequently, and many of them are of a "mysterious" nature.

    She had "growing pains" in her legs during her twenties, severe post-partum depression (I had severe "present"- partum), a rotation in her spine, SI joint dysfunction, IBS and a mild generalized achiness that comes and goes. She doesn't seem to have a lot of fatigue issues or a lot of tender points, but I would lean toward the diagnosis of very mild FMS.

    I think I inherited this predispostion from her, and then I had several "hits", starting with a possible exposure to pesticides from infancy. I feel that I develped fibro slowly over the years, and that weakened me for when I was hit with the EBV in college. I think that may have been when I first started down the CFS path, with the fibro worsening along with it-- lots of tender points, fatigue, infections. I never felt quite the same afterward, although I did recover for the most part. But with each physical or emotional "hit" after that, I would decline further until finally, I was unable to recover.

    The part that has me discouraged the most is that my youngest daughter who takes after me in so many ways, seems to be disposed to it. I am trying hard to give her the best foundation of health I can, but I can barely do that for myself, and I am motivated. She is too young to be motivated, and I don't want to scare her... "Eat your broccoli or you'll end up like Mom!" "Don't buy candy with your allowance or you'll get sick like me!" I've come close to saying those things, but they don't seem like good tactics. I try to be a good model, but ... sorry, this is turning into a different topic. I guess I just worry that she will eventually experience a hit of her own, and develop FMS or CFS. My prayer is that she will take after my mother and stay mild.

    Thanks for the question
    Lisette
  9. SleepyMama

    SleepyMama New Member

    I understand your concern about your daughter. I can only imagine how my mother feels about me. She's a very good mother and did everything she knew to give her kids a healthy diet and active lifestyles. She had no idea then what CFS was. The fact that mine is much worse than hers in some ways is interesting too. I don't suppose I helped that much by smoking and drinking like a fish in my teens and doing every drug under the sun.

    At this point in my life I'm trying to help my kids by keeping my household free of toxic chemicals which could weaken their immune systems, giving them high potency multi-vitamins. (I get kids chewables which are highly absorbable from Melaleuca) and making sure their diets are REASONABLY low in added sugar. It's not cut-off alltogether, but my 2yo think apple juice and chocolate milk are treats, so that he might choose them over soda in the future. We drink milk and water here day to day, have healthy snacks avoid packaged foods and artificial sweeteners. If and when I'm able to drive and afford organic foods, we'll make the switch. I also plan to move out of the city for cleaner air as soon as I can afford it (cleaner water too, our city water is fuoridated, but the country water isn't here).
    I hope that all these things will give my kids' immune systems the advantages that mine never had....and maybe help mine get strong enough to fight this thing.

    Oops, forgot to mention: Thanks for your thoughtful response ;)

    Thanks to everyone else too for your responses!
    [This Message was Edited on 02/20/2007]
  10. blkkat

    blkkat New Member

    i hurt so this will be short. my mom has HEP.C ,FM, -her aunt had FM real BAD, i have FM,CFS, i also had HEP. A at age 5, im very SICK 24/7- my 19yr old son has FM,CFS also pretty bad. my son and i dont have HEP. C , fyi i was adopted at one month old and never knew my mom or her ( my ) family just making that statment cause some think this is a learned behavor YA RIGHT!!!!! BLKKAT----hope this helps alittle good poll!!!! hey i think ill start a poll- on HEP.? good idea?
  11. suzetal

    suzetal New Member

    FIBROIs There An Infectious Connection?????????????? 12/21/06 04:48 AM

    I have never read this before .Thought other members would like to read this...........If it has been posted before sorry I missed it ...
    Very good info........Sue

    Education / Articles / Fibromyalgia- is there an infectious con...

    Fibromyalgia- is there an infectious connection?

    Fibromyalgia (FM) is a commonly misunderstood, sometimes misdiagnosed rheumatic disease. The main symptoms are achiness, pain (more in the muscles than in the joints), stiffness, fatigue, accompanied by headaches, depression, sleep disorders, Raynaud's and irritable bowel syndrome. The sites of pain are located in specific areas call-ed tender or trigger points.

    The painful tender points are located where the ligament attaches the muscle to the bone. There are 18 tender point locations. Sensitivity at 11 points defines a diagnosis of fibromyalgia. FM is not life threatening nor does it cause physical deformities. Many lab tests are within normal range. In fact, most patients look extremely well and fit, making it difficult to account for the degree of clinical suffering they are experiencing, yet 10-30% of fibromyalgia patients are disabled to some degree because of their disease symptoms.

    It is 9 times more common among women than men, usually between the ages of 40 and 60, is more common in Caucasians than other races, and is the second or third most common disorder treated by rheumatologists.

    Potential Pathogens As is the case of most forms of "arthritis," no known cause has been established, but a number of possibilities are mentioned in the medical literature. Like many forms of arthritis, the cause of FM is probably not limited to one single factor. 55% of patients identify a "flu-like" or viral type illness, 33% physical trauma/injury and 14% emotional stress as a precursor to the onset of symptoms. The connection of FM to infections is well documented in the literature, especially in relation to Lyme disease, mycoplasma, Chlamydia pneumoniae., Hepatitis C, Parvovirus B19, HIV, and Epstein-Barr. It is believed as many as 25-40% of long-term Lyme patients develop fibromyalgia-like symptoms, particularly pain and fatigue; as many as 25% of HIV patients, 57% of RA patients and 24% of Psoriatic Arthritis patients also have FM symptoms. A 1993 Annals of Internal Medicine article (Lightfoot et al) found 10% of patients with Lyme Disease would have arth-ritis develop as a result of the spirochete infection. Because this organism (like mycoplasma) is difficult to culture, the diagnoses is based on the occurrence of (1) one or more of the classical features and (2) serum antibodies to the etiologic spirochete after the first 4 to 6 weeks of illness.

    Some Lyme/FM patients do not respond to courses of antibiotics, causing researchers to dismiss the possibility of an organism as a trigger for the disease and antibiotics as a therapy. This might be a misleading assumption as explained by Garth Nicholson, PhD, in a recent article (Environmental Phys, 1997). "Are chronic, systemic mycoplasmal infections the answer to CFS, FMS, GWI* and other disorders? Of course not! This is likely to be an appropriate explanation for a rather large subset of CFS, FMS, GWI* and some arthritis patients, but certainly not every patient will have the same chronic infections. Some patients may have chemical exposures or other environmental problems as the underlying reason for their chronic signs and symptoms. In these patients, antibiotics should have no effect whatsoever."

    Nicholson has found mycoplasma infections in approximately one half of patients with FM as well as arthritis. "The identification of mycoplasma infections in the leukocyte blood fractions of a rather large subset of CFS, FMS and arthritis patients suggests that mycoplasmas, and probably other chronic infections as well, may be an important source of morbidity in these patients. If such infections are important in these disorders, then appropriate treatment with antibiotics should result in improvement and even recovery. This is exactly what has been found." (Nicholson JAMA 1995). "Only antibiotics that are effective against the pathogenic mycoplasmas result in recovery, and some antibiotics, such as penicillins, can worsen the condition." (Nicholson, 1996, & 1997.)

    Goldenberg suggests two possibilities for an infectious cause:

    1) the infectious agent would either directly invade tissues such as the joints or central nervous system or

    2) "trigger" factors that would cause the chronic myalgias, fatigue, headaches, sleep disturbances, and mood disturbances... Infectious agents are capable of activating cytokines which may in turn cause severe myalgias, fatigue, and neurocognitive disturbances... The potential role of a microbial agent as a trigger to fibromyalgia remains tenable. Antibodies to Chlamydia pneumoniae have been found in 78.3% of FM patients tested or 67.4% for unselected rheumatic patients.

    These high numbers point to a possible connection between Chlamydia pneumoniae and fibromyalgia. In a Spanish study, Rivera et al found 15% of 112 FM patients had Hepatitis C viral Infection (HCV), and among HCV patients, 10% had FM. The incidence of FM in the control group was less than 2%; the prevalence of FM in the general population was 2%. "The presence of active infection by HCV is more likely to trigger FM than the stress and anxiety produced by the disease." (Rivera et al, 1997)

    Other researchers have described HCV infection as a trigger for autoimmune disorders (Pawlotsky 1994 & Agnello 1992). "In the remaining 85%, other known and unknown viruses that can produce chronic infections, could be responsible for FM symptoms. We think the presence of such viruses should be sought in patients with FM symptoms." (Rivera et al, 1997) Parvovirus B19 infection as a trigger for autoimmune disorders (Pawlotsky 1994 & Agnello 1992). "In the remaining 85%, other known and unknown viruses that can produce chronic infections, could be responsible for FM symptoms. We think the presence of such viruses should be sought in patients with FM symptoms." (Rivera et al, 1997) Parvovirus B19 has been implicated as a cause in cases of chronic arthritis and may mimic rheumatoid arthritis.

    Berg et al identified patients with established FM who had symptoms consistent with recent or distant B19 infection. In fact, 30-60% of the general population test positive for Parvovirus B19, and the incidence increases with age.

    The timing of testing for PV B19 appears to be critical. Testing too early or too late will yield negative results. 25% of HIV patients experience fibromyalgia symptoms, adding additional discomfort and anxiety.

    Epstein Barr Virus (EBV) has been considered a possible cause of FM or CFS because of similarity of symptoms, but so far, a connection has not been proven. Most observers currently believe that no single infectious agent is likely to be the cause of CFS (or FM). Yet it has been shown that chronic persistent viruses may often be reactivated during this illness. Is this merely an epiphenomenon? Or, once reactivated, do these viruses go on to produce many of the symptoms of the disease? And what reactivates these viruses? If it is some defect in immunologic containment, what causes the defect? Could it be stress? genetics? infection with other viruses?

    In the view of Komaroff et al, it is reasonable to speculate that all these factors are capable triggers, with different factors playing different roles in different individuals.

    COMMON FM SYMPTOMS chronic, widespread pain - most fatigue - 70-90% morning stiffness - 80% migraine headaches - 50% depression - 25-50% sleep disturbances - 70% anxiety - 25% Raynaud's-like syndrome - 33% numbness, tingling - 75% irritable bowel syndrome - 50% positive ANA - 10%

    ORGANISMS THAT MIGHT BE CONNECTED TO FM Borellia borgdorferi (Lyme) Hepatitis C Epstein-Barr Virus Mycoplasma Chlamydia pneumoniae Parvovirus B19 HIV References AM Berg, SJ Naides, RW Simms, Established Fibromyalgia Syndrome and Pravovirus B19 Infection, J Rhu, 1993; 20: 1941-1943. D Buchwald, DL Goldenberg, JL Sullivan, AL Komaroff, The "Chronic Active Epstein-Barr Virus Infection" Symdrome and Primary Fibromyalgia, Arth & Rhu, 1987; 30:10, 1132-1136. D Buskila, DD Gladman, P Langevitz, S Urowitz, HA Smythe, Fibromyalgia in Human Immunodeficiency Virus Infection, J Rhu, 1990; 17:9, 1202-1206. XJ Caro, Is There an Immunologic Component to the Fibrositis Syndrome? Rhu Dis Cl N Am, 1989; 15:1, 169-186. B Freundlich, L Leventhal, The Fibromyalgia Syndrome, Primer on the Rheumatic Diseases, Arthritis Found, 1993; 247-249. DL Goldenberg, Fibromyalgia and Related Syndromes, Textbook of Rheumatology, R Klipple ed, Mosby, 4.15.1-10. DL Goldenberg, Fibromyalgia and other Chronic Fatigue Syndromes: Is There Evidence for a Chronic Viral Disease? Seminars in Arth & Rheum, 1988; 18: 111-120. DL Goldenberg, Do Infections Trigger Fibromyalgia? Arth & Rhu, 1993; 36: 1489-92. DL Goldenberg, Fibromyalgia and Its Relation to Chronic Fatigue Syndrome, Viral Illness and Immune Abnormalities, J Rhu, 1989; 16 (suppl 19); 91-93. VM Hsu, SJ Patella, LH Sigal, "Chronic Lyme Disease" as the Incorrect Diagnosis in Patients with Fibromyalgia, Arth & Rheum, 1993; 36:11, 1493-1500. AL Komaroff, DL Goldenberg, Chronic Fatigue Syndrome: Definition, Current Studies and Lessons for Fibromyalgia Research, J Rhu, 1989; 16 (suppl 19), 23-27. JM Krueger L Johannsen, Bacterial Products, Cytokines and Sleep, J Rhu, 1989; (Suppl 19) 16; 52-57. P Langevitz, D Buskila, Studying Tenderness - A Clue to Understanding Fibreomyalgia, Isr J Med Sci, 1992; 28:" 41-42. LJ Leventhal, SJ Naides, B Freundlich, Fibromyalgia and Parvovirus Infections, Arth & Rhu 1991; 34: 1319-1324. RW Lightfoot, BJ Luft, DW Rahn, AC Steere, LH Sigal, DC Zoschke, P Gardner, MC Britton, RL Kaufman, Empiric Parenteral Antibiotic Treatment of Patients with Fibromyalgia and Fatigue and a Positive Serologic Result for Lyme-disease, Ann Int Med, 1993; 119: 503-509. I Machtey, Chlamydia pneumoniae antibodies in Myalgia of Unknown Cause (including Fibromyalgia), Br J Rheum, 36:10, letter, 1134. GL Nicholson, New Treatments for Chronis Infections Found in CFS, Fibromyalgia Syndrome and Gulf War Illness, Environmental Physician, Fall 1997, 13-14. GL Nicholson, Doxycycline Treatment and Desert Storm, JAMA 1995; 273: 618-619. GL Nicholson, NL Nicholson, Diagnosis and Treatment of Mycoplasmal Infections in Persian Gulf War Illness - CFIDS patients, Int. J Occup Med Immunol Tox 1996; 5: 69-78. GL Nicholson, NL Nicholson, M Nasralla, Mycoplasmal Infections and Chronic /Fatigue Illness (Gulf War Illness) Associated with Deployment to Operation Desert Storm, Int J Med, 1997 (in press) J Rivera, A De Degio, M Trinchet, AG Monforte, Fibromyalgia-associated Hepatitis C Virus Infection, Br J Rheum, 1997; 36:9; 981-985. *CFS - chronic fatigue syndrome; FMS - fibromyalgia syndrome, GWI - Gulf War illness
  12. bunnyfluff

    bunnyfluff Member

    No. No one else in my family has ever had anything like this. I do, however, attribute it to a blood transfusion. It made me "sick" in a different way, and I haven't been the same since.

  13. SleepyMama

    SleepyMama New Member

    I somehow missed your second post until I came back to re-read. Thank you for the information. And for your understanding. It's much appreciated!
  14. i feel that i inherited fibromyalgia from my mum.but i most definately didnt have chronic fatigue syndrome at that same time,but got it many years later,like 10 years later,after having had a full hysterectomy operation.

    anyway..

    my mum told me that in 1940s,when my mum was 14 years old, her mum and dad had thought my mum was dying.she was bed bound with a stiff body,and very high fever.my grand parents couldnt afford to pay for a doctor to come visit my mum.there wasnt a free NHS in the uk,back then.

    anyway when my mum was maybe in her middle 40s, she had to go have all her teeth removed,because of some sort of gum desease she had.and this dentist must have had her medical report,because i remember her telling my dad.

    today the dentist told me i have a weak heart,and that i have had rheumatic fever.she,d told him about that mystery illness she,d had when she was 14 years old.so there it was on her medical record that she,d had rheumatic fever.

    she,d been a migraine sufferer from age 24 years,but her migraines lasted 3 days at a time,with vomiting.mine dont last that long.

    anyway,in the 1980s, when im at my anti natal appointment,at the hospital.i was expecting my first child.
    id had to have a amneo sentesis (cant spell it) performed,as there is spino bifida in my family (my baby sister had died from it)

    well they scan your pregnancy,and put a needle into the fluid that surrounds the baby.take some fluid out,and check to see if the baby has spino bifida.

    my baby was fine,thank the lord.

    but at a later anti natal check up,as im sitting in the waiting room,a nurse comes to me and asks...

    has anyone in your family had,or have..rheumatic fever?

    i said ,yes my mum had it when she was 14 years old.

    i stupidly never asked why the nurse had asked me that question,i was too busy worrying if my baby was ok,and didnt have spino bifida.

    but i wish i had asked,because over 12 years ago i was told i have fibro,and that they at the hospital have known ive had it many many years,but didnt choose to tell me about it,as in their words...i wasnt having problems with mobility back then.

    migraines,i believe are connected to the fibro,and i believe (looking back) that i started having fibro,at 19..when the migraines first attacked me.

    my mum and i are the only two recent family members to suffer from migraine.i wish i knew more about my mums side of the family.

    my grandma (my mums mum) did have that wrist swelling that i get,and that swelling in the ankles,i can remember seeing that.its a different swelling to fluid retention.

    so id say i inherited this fibro from my mums side of the family.

    mum also had ..

    irratable bowel syndrome

    blurred vision

    severe hot sweats and weakness

    nasal passage discharge (that white crusty kind that i get)

    difficulty passing urine,ended up taking fluid pills for the bloated tummy,and to make her pee.

    she got that rash on her face and chest before the sneezing bouts came.

    had very sensitive skin on her scalp.

    had that swelling at the base of her spine,like i have.it would come and go.

    she had a sort of dry skin rash inside her ears,that would itch.i have that too but figure that mine is psoriasis.

    she had the sore throat and loss of vocal chords occasionally. well i could go on,but you all know the signs of fibro.


    kind regards
    fran
  15. BEARANDBUGSMOM

    BEARANDBUGSMOM New Member

    My mom.....it's almost like were twins linked together we have a lot of the same pains and feel the same a lot of the time and have felt the same way during the years.....