FM In Blood Relatives?

Discussion in 'Fibromyalgia Main Forum' started by StephieBee, Jul 13, 2006.

  1. StephieBee

    StephieBee New Member

    I was curious as to how many of you have one or multiple blood relatives with FM. I know they believe that it may run in families. My sister was dx'ed with a mild form, so was my uncle, and we believe my aunt (but hasnt been dx'ed yet) because even if you touch her she hurts. I just wanted to get a poll to see how often or rare it is. Thanks!

    Take Care,
  2. suzetal

    suzetal New Member

    I only have my 2 children left 32 D and 24 S. Thank God niether show any symptoms.

    My Grandmother might have had it not sure she passed a long time ago.


  3. barbinindiana

    barbinindiana New Member

    and I both have FM and also IBS, CFS, Orthostatic Intolerance. We know of a cousin who also has FM. Isn't it strange that this happens so often?
  4. StephieBee

    StephieBee New Member

    One of my old friends got dx'ed with it years after I did. She was in many many car accidents. After that, her sister did also.
  5. MtnDews

    MtnDews New Member

    Yes, I have it and so does my sister. My daughter has all the signs but not mentioning it to her doctor...she doesn't want it. Can't blame her.

    HOWEVER, I was diagnosed with Ehlers Danlos too, something I think MANY with FM have. Orthostatic Intolerance, hypermoblity, pain....all part of Ehlers Danlos, but very under diagnosed. Just thought I'd share that with you.
  6. carebelle

    carebelle New Member

    I have two brothers and two cousins with it. My two best friends. And the same Brothers both their wifes.I also am seeing symtoms in all three of my children.

    I think we can catch it because what are the odds of so many people close to me haveing this and they do.
  7. sorekitty

    sorekitty New Member

    with FM. My aunt and cousin. Both on my father's side. My sister and I both have hypermobility too.
  8. razorqueen

    razorqueen Member

    mother has it as well, diagnosed after me. My daughter is showing signs as well. My moms mom possibly had it too. She had a lot of pain issues.

  9. SPR30

    SPR30 New Member

    My mom and her mom have it. My father's sister too, I think.
  10. rockyjs

    rockyjs Member

    Everyone in my family with fibromyalgia also has Ehlers-Danlos Syndrome (Type III, hypermobility). My rheumatologist said often when we're younger our brains are able to filter out the pain signals, but if something happens to mess with that filter, like a car accident that causes a lot of pain or as in my case encephalitis, then suddenly we begin to feel it full-force. Makes sense to me.

  11. TheOtherGracie

    TheOtherGracie New Member

    Risking sounding like a broken record here, click on my name and read the post all in caps.

    It may indeed be genetic, and FM and this disease may be one in the same. The doctors are catching up with this thought, but not the American docs.
  12. victoria

    victoria New Member

    hemochromatosis (iron overload in blood) should also be checked for, runs in n. european descent, can show up at any age despite the generality that women don't show it until later in life because of menses. Men can also show up with it later than sooner altho they do generally show up sooner with it.

    And on the other hand, my son started to show all my problems plus more... turns out he has lyme. I am doing the Marshall Protocol and getting results, so I assume I have some sort of bug, whether it be lyme or something else. How severe one's symptoms are from lyme or mycoplasma or a multitude of other stealth pathogens seem to be determined by our genetic weaknesses.


  13. BethM

    BethM New Member

    My mother has FMS, I have it, my eldest sister says she has it, and a first cousin on my dad's side also has it. I suspect my younger son age 22 years) also has it, and I pray it never fully manifests for him.

    RA also runs in the family. I fully believe there is a genetic component to fibro. Someday that will be proven, I bet.

    Interesting connection in another post about fibro and Ehlers-Danlos syndrome. I've never seen the two connected before this. hmmmmm.


  14. mme_curie68

    mme_curie68 New Member

    Yes - my maternal aunt has it. She was dx'd in the early 90s.

    I also have a paternal aunt who has MS. She's been living with that since the mid 70s.

    Madame Curie
  15. lana24

    lana24 New Member

    My aunt had been diagnosed before i was diagnosed, Possibility my mother is also suffering from fibro symptoms
  16. MsE

    MsE New Member

    I have CFS and the doc says probably FM as well, my sister has FM and MS, one of her daughters has been diagnosed with FM.
    I am suspicious that one of my daughters has CFS.
  17. rockyjs

    rockyjs Member

    Here's a really good article that gives information on the connection and also the hereditary factor. Scroll down till you see the heading "Fibromyalgia and Joint Hypermobility" for the details.


    Joint Hypermobility And Fibromyalgia
    By Tamara Liller, M.A.

    [Reprinted from Fibromyalgia Frontiers, 2004, Volume 12, Number 1]

    During the last decade, the medical condition known as joint hypermobility syndrome (JHS) has captured the interest of a rising number of researchers and clinicians. It is not just JHS alone that is of interest, however, but its overlap and interrelationship with other maladies which fall under the heading of "soft tissue rheumatism", including epicondylitis, tenosynovitis, bursitis, and fibromyalgia (FM).

    As its name suggests, joint hypermobility occurs when large or small joints in the body are able to extend beyond their normal physiological limits.1 Most of us can probably remember childhood friends or classmates who were able to effortlessly contort their bodies in seemingly impossible ways. We may have seen ballet dancers, athletes, or musicians who are able to perform incredible feats in their crafts. Some of us may even be aware of joints in our own bodies which hyper-extend, pop out of alignment, or become dislocated. Often though, people are unaware of the condition unless it causes them pain or other problems. Because JHS is inherited, several members of a family can have it and just not realize that they are any different from anyone else.2

    For many years, JHS was considered a minor rheumatologic malady which occurred in 5-15% of the general population, largely females. JHS seemed to cause mainly biomechanical problems which typically occurred following periods of excessive or repetitive physical activity. However, as noted by Rodney Grahame, Emeritus Professor of Clinical Rheumatology at the University College of London Hospitals and a leading authority on joint hypermobility, a lot has changed since then.

    Professor Grahame recently addressed a special symposium on JHS at the 2003 Annual Meeting of the American College of Rheumatology (ACR), the first time the condition has ever been discussed in a full program by the College. In his presentation, he characterized joint hypermobility syndrome as a problem with connective tissue matrix proteins which in turn is caused by genetic defects--some of them identified, others not. He described JHS as a complex and largely neglected condition that "bridges the adult/juvenile divide in a way that no other disease does" and which is now thought to be associated with a range of neurophysiological defects including:3

    Skin Characteristics: One of the more prominent aspects of JHS, the skin is frequently very "stretchy", soft, fragile, and sometimes also thin or transparent in quality with a tendency to bruise easily. Scar tissue, when it exists, is often thin and papery. Stretch marks may develop on certain areas of the skin, particularly during the teenage years when the body is growing rapidly,

    Proprioceptive Impairment: Patients have trouble knowing where certain joints are in space, which in turn causes difficulties with musculoskeletal function and stability.

    Pain Perception And Characteristics: Studies have suggested that as many as half of JHS patients have enhanced pain perception as well as noticeable pain in multiple sites in the body. Many seem to respond poorly to local anesthetics (i.e., at the dentist or during surgery) and require larger dosages for effective pain control.

    Autonomic Dysfunction: Typical non-joint related, autonomic symptoms include orthostatic hypotension, light-headedness, fainting, tachycardia, fatigue, and heat intolerance, among other symptoms.4

    Anxiety: For reasons that are not yet clearly understood, JHS is also associated with anxiety, post-traumatic stress disorder, and panic attacks which may be explained by over-stimulation of the sympathetic nervous system’s "fight or flight" response.5

    Overlap With Other Disorders: JHS appears to share certain characteristics with three less common connective tissue disorders: Ehlers Danlos Syndrome, Marfan Syndrome, and osteogenesis imperfecta, but its manifestations are more benign. For this reason, the syndrome is also sometimes known as benign joint hypermobility syndrome, or BJHS.

    Joint hypermobility syndrome is more disabling than originally thought, however. Among its symptoms are chronic pain, fatigue, synovitis, spinal problems, osteoarthritis, and dysautonomia.6

    Diagnosing Joint Hypermobility Syndrome

    Since the late 1960’s when serious research on JHS first began, a number of classification systems have been used to diagnose the condition. Because there has been no standardized approach to diagnosis, it has been difficult to compare research studies and to move forward in the understanding of JHS.

    One of the more widely used early diagnostic systems for JHS was the Beighton Score. A patient simply got a score (up to nine points) based on whether (s)he could perform five maneuvers (See Table 1).7

    Although the Beighton tests are easy to perform and are therefore very popular, they have several drawbacks according to Professor Grahame and JHS authority Mary Anne Fitzcharles, Associate Professor of Medicine in the Division of Rheumatology at McGill University in Quebec, Canada. Because it only samples five joints, the Beighton Score can easily miss clinically significant hypermobile joints in other parts of the body.8 For example, having "flat feet" (normal arches which flatten when weight is put on them) can be a tipoff to the existence of JHS,9 but foot characteristics are not part of the Beighton test. In addition, it is not yet known whether having large joints (i.e., shoulders hips, knees) which are overly mobile causes a different clinical picture in a patient than having hypermobile joints in smaller joints, as in the hands.10 Also, the scale makes no allowances for changes in joints which result from aging11 or from other co-existing disorders which affect mobility.

    Recently, a new set of diagnostic criteria were adopted by the British Society for Rheumatology. Known as the Brighton Criteria, they incorporate the earlier Beighton Score but also allow a patient to have other extra-articular complaints (See Table 2).12


    Table 1: The Beighton Score

    From a standing position and with knees straight, bend over and place both hands flat on the floor without bending the knees (one point)

    Bend the knee backwards (one point for each knee that can do this)

    Bend the elbow backwards (one point for each elbow)

    Bend the thumb backwards so that it touches the forearm (one point for each thumb)

    Stretch the little finger backwards more than 90 degrees (one point for each little finger)

    Table 2: The Revised Brighton 1998 Criteria For The Diagnosis Of Benign Joint Hypermobility Syndrome (BJHS)

    Major Criteria

    1. A Beighton score of 4/9 or greater (either currently or historically)

    2. Arthralgia for longer than 3 months in 4 or more joints

    Minor Criteria

    1. A Beighton score of 1,2 or 3/9 (0,1,2, or 3 if aged 50+)

    2. Arthralgia (greater than or equal to 3 months) in 1-3 joints or back pain (greater than or equal to 3 months), spondylosis, spondylolysis/spondylolisthesis

    3. Dislocation/subluxation in more than one joint, or in one joint on more than one occasion

    4. Soft tissue rheumatism greater than or equal to 3 lesions (e.g., epicondylitis, tenosynovitis, bursitis)

    5. Marfanoid habitus (tall, slim, span/height ratio >1.03, upper; lower segment ratio < 0.89, arachnodactily [+ Steinberg wrist signs]

    6. Abnormal skin: striae, hyperextensibility, thin skin, papyraceous scarring

    7. Eye signs: drooping eyelids or myopia or antimongoloid slant

    8. Varicose veins or hernia or uterine/rectal prolapse

    BJHS is diagnosed in the presence of two major criteria, or one major and two minor criteria, or four minor criteria. Two minor criteria will suffice where there is an unequivocally affected first-degree relative.


    Fibromyalgia And Joint Hypermobility

    Increasingly, researchers have found that JHS occurs to a significant degree in a subset of FM patients. At the 1995 Annual Meeting of the ACR, Canadian researchers Hudson, Starr, Esdaile, and Fitzcharles presented data on their controlled study of 393 rheumatology patients, reporting that 50 of them (12.7%) had hypermobility.13 When comparing hypermobile to control patients, they found that the hypermobile ones were more likely to be female (96% vs. 73% of controls) and slightly younger (mean age 45 vs. 53) and were significantly more likely to have soft tissue rheumatism (67% vs. 25%) and fibromyalgia (30% vs. 8%).14 The hypermobile patients were significantly less likely to have inflammatory arthritis (4% vs. 32%). Among the hypermobile, 44% had widespread pain; 44% had multiple pain sites; 80% had spinal pain; and 54% had symptoms of thoracic outlet syndrome. The research group went on to publish their study in the British Journal of Rheumatology in December 1995.

    Two studies reported in 1996 by Spanish researchers Acasuso et al.,15 and Danish researchers Lykkegaard et al.,16 also found strongly significant relationships between fibromyalgia and joint hypermobility. Both groups of investigators concluded that joint hypermobility may play a part in the pathogenesis of FM in adults.

    Two later studies reported by Connecticut researchers Abeles et al. (1997)17 and by Turkish researchers Karaaslan et al. (2000)18 failed to find a significant relationship between FM and JHS. However, it should be noted that the Abeles study used subjects between 40 and 60 years old where age might have had an effect on mobility, and the Karaaslan study included healthy controls composed in part of relatives of the patients studied. Since JHS is highly likely to occur in relatives of patients, this sampling procedure could have affected the results of the study.

    A 1993 study published by Israeli researchers Gedalia, Press, Klein, and Buskila,19 suggests that there is also a strong association between joint hypermobility and fibromyalgia in children. The researchers studied 338 children (179 boys and 159 girls, aged 9-15 years) in an Israeli public school. Of the 338 children, 43 (13%) were found to have joint hypermobility and 21 (6%) fibromyalgia. Of the 21 with fibromyalgia, 17 (81%) had joint hypermobility, and of the 43 with joint hypermobility, 17 (40%) had fibromyalgia. Statistical analysis confirmed that the two were highly associated.

    Professor Fitzcharles reminds us that we still do not know why the pain mechanisms of fibromyalgia show up predominantly in the musculoskeletal (MSK) system, and this is why a link between FM and JHS is of interest. She hypothesizes that because tendons and ligaments are important in joint stability, excessively loose ligaments could cause a person to experience repeated microtrauma during the course of even a normal day. This might be exacerbated by the proprioceptive difficulties experienced by people with JHS. She concludes: "It therefore follows that recurrent microtrauma to ligamentous structures in some hypermobile individuals will lead to repeated pain experience and may trigger disordered pain responses".20 Dr. Andrew Holman might also remind us that: "evidence of altered autonomic function, whether primary or secondary, in patients with fibromyalgia is building".21

    Clearly, a lot more research needs to be done in this area, particularly now that more comprehensive and definitive diagnostic criteria are available for JHS. However, as Professor Fitzcharles concludes in an editorial in the Journal of Rheumatology (2000):

    There is thus increasing evidence that at least a subgroup of patients with soft tissue MSK pain, widespread pain, or FM are hypermobile. Clearly, hypermobility is not the only or the major factor in the development of widespread pain or FM, but rather a contributing mechanism in some individuals. Physical conditioning and regular but not excessive exercise is probably protective towards the development of MSK pain.22

    Aside from exercise, the treatment of JHS involves a team approach which includes the use of pain medication as necessary, physical therapy, joint stabilization, podiatric care, and patient education.


    Karaaslan A et al. Joint Hypermobility And Primary Fibromyalgia: A Clinical Enigma. J Rheumatology 2000;27(7):1774.

    Grahame R. New Insights Into The Joint Hypermobility Syndrome. ACR/ARHP Combined Clinical Symposium, ACR Annual Meeting 2003.


    Holman AJ. Is Hypermobility A Factor In Fibromyalgia? J Rheumatology 2002;29(2):397.


    Ibid, Grahame.

    Website of the Hypermobility Syndrome Association: www.

    Ibid, Grahame.

    Ibid, Grahame.

    Fitzcharles MA. Is Hyper-mobility A Factor In Fibromyalgia? J Rheumatology 2000;27 (7):1587.


    Grahame R. The Revised (Brighton 1998) Criteria For The Diagnosis Of Benign Joint Hypermobility Syndrome. J Rheumatology 2000;27(7).

    Hudson N et al. Diagnostic Associations With Hypermobility In New Rheumatology Referrals. ACR Annual Meeting 1995, Abstract #571.


    Acasuso M et al. Fibromyalgia And Joint Hypermobility: A Close Association. ACR Annual Meeting 1996, Abstract #378.

    Lykkegaard JJ et al. Prevalence Of Joint Hypermobility In Patients With Fibromyalgia, Chronic Low Back Pain, And Healthy Controls. ACR Annual Meeting 1996, Abstract #379.

    Abeles M. Fibromyalgia And Hypermobility: A Reassessment. ACR Annual Meeting 1997, Abstract #87.

    Ibid, Karaaslan.

    Gedalia A et al. Joint Hypermobility And Fibromyalgia In School Children. Annals of Rheumatic Diseases 1993;52(7):494-6.

    Ibid, Fitzcharles, p. 1587.

    Ibid, Holman.

    Ibid, Fitzcharles, p. 1588.

  18. Rose73

    Rose73 New Member

    I have a sister who has FM and Lupus. A brother who has FM. My two other sisters deal with pain, and don't know what it is. About other relatives I don't know. I read somewhere that it runs in families.

  19. angellwolffe

    angellwolffe New Member

    I read this thread the other night and did a lil asking. yep 5 out of 7 of us kids have some form and dear old mom does.i remember an aunt and a great aunt that suffered from rheumatism way back when, 30 years ago. From what i can tell mine is the worst but my body and life has been shaken up the worst.

  20. dafoefan

    dafoefan New Member

    My Paternal Grandmother was diagnosed with Fibro (she has passed). I believe her son has it as well. He has been told only that he has different types of arthritis.

    My Grandmother and I both had/have hypermobility.

    I'm afraid my daughter may have it, I pray she doesn't.

[ advertisement ]