Chronically Genetic

Chronically Genetic

By Liza Zoellick.

Ever since I can remember I wanted kids. Growing up as an only child I fantasized about having a large family. I envied my friends who had siblings and my cousins who had dozens of cousins themselves. I had two cousins, who I adored then and still do. Also, I am adopted. I think this, in and of itself, ignited a desire to have children. I wanted to look into the face of another and see myself, or even  little traces of myself in the form of similar expressions or shared talents. When I thought of having little girls, I pictured them borrowing my clothes; earrings, sweaters and jeans, because I was going to be that cool mom. I don’t think I ever thought I would quite so literally, share my genes with them but, I wasn’t diagnosed with many of my issues until after I had kids. Not that knowing would have changed my mind about having kids, I just would like to think I would be more prepared.

Liza Zoellick

The reason for my writing this particular post is that my 23 year old daughter was just diagnosed with fibromyalgia and may possibly have rheumatoid arthritis too. I had sent her to my rheumatologist because she and I have had similar issues and since learning from my rheumatologist that some of the surgeries I have had may have been unnecessary, I decided it was in her best interest to see the doctor before having any more surgeries herself. When she got home, it was: “Guess what? You have a fibromyalgia buddy!” I can’t express enough my surprise. I really thought, if anything at all, we might share the RA, but not the fibromyalgia. She explained to me that our doctor also believes she has the RA, but of course we have to wait for lab results now.

I spent much of the night doing even more research on RA and the gene link. Sadly, while researchers do think that certain genes may increase your risk of RA, they also don’t consider RA to be a genetic disorder meaning, geneticists can’t calculate your risk of developing RA based on your family history. The story isn’t much different for fibromyalgia. While research so far concludes that fibromyalgia isn’t passed from parents to children, the odds of developing fibromyalgia is much higher in immediate families of people with fibromyalgia than in families without any history of fibromyalgia. The remaining part of my sleepless, evening entailed a growing frustration over how these two illnesses manifest themselves. Primarily, in regards to fibromyalgia because, insomuch as what I have learned, what precipitates this is trauma of some kind (physical or emotional) or an infection. There is no trauma that readily comes to mind, that I can say “Yes! This must be what caused it.” Likewise, there is no illness that comes to mind as a trigger for fibromyalgia. In looking at my own life, I have had both trauma and infection that I could choose from as culprit for this illness and so for my daughter, all I can come up with is hereditary.

In some ways I wish genetics had nothing to do with it because I feel like I am somehow responsible for it. In other ways I hope it is genetic because, if the medical community can look into families with a history of fibromyalgia, maybe it will help in the development of a cure for it or at least an effective medicine. I know many other disease/illness studies have benefited from being able to trace family history and the hereditary nature of it. At the same time I don’t think it should take something like hereditary to bring awareness to a certain disease, however I do know that unless there is awareness people do not like to open their purse’s to donate unless they have certain facts and I certainly don’t have hard feelings about it because none of us can afford to give even small amounts, to every organization in need of it.

As for RA, it seems gene factors account for 50% of the risk in developing RA though the cause of RA is still, ultimately unknown. Everything from genetic, hormonal, immunologic and infectious factors may play a role. Too, it would seem that socioeconomic, psychological, and lifestyle factors such as tobacco use, may have an influence in the development of the disease as well as the progression. I really hope that there is an eventual concrete cause for this disease. Though I am at a loss as to between RA and fibromyalgia, which might be the worst, they both deserve more research and more funding.

I hope my daughter has a better outcome. I think that even if the biologics work to manage my RA that there has been significant damage done already and because I still have the fibromyalgia, which there is not only no known cure, but no known effective treatment that works for everyone, that the future doesn’t look as bright. I’ve already watched while these illnesses have stolen a tremendous amount of my life from me; I am not prepared at all to watch it steal things away from my daughter while she is still so young and vibrant. There are many young men and women who have one or both of these illnesses. I think they are remarkable and brave for pushing past it and going on with their lives. I think it is natural for me not to want my daughter to live in pain, but I do know for a fact that she would not let it stop her either and she hasn’t.

Liza Zoellick lives in Houston. She is a delegate of the International Pain Foundation. You can follow her writing lovekarmafood.com and follow her on Twitter @fibrohippiechic

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Authored by: Liza Zoellick

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Byron

I will post again, for the umpteenth time::

Every chronic pain patient needs to be VERY concerned about HR 4482, the Meadows-Renacci “Opioid Abuse Deterrence, Research, and Recovery Act of 2017” https://www.congress.gov/bill/115th-congress/house-bill/4482/committees?r=6 .

Contact your US Representatives, especially members of the Energy & Commerce Committee https://energycommerce.house.gov/about/ and Judiciary Committee https://judiciary.house.gov/wp-content/uploads/2017/12/115th-House-Judiciary-Committee-Updated-120517.pdf .

I have studied hundreds of Fibromyalgia patients and concluded it is a repetitive stress disorder whereat gravity is the stressor. In my opinion, about 15% of women are born with loose ligaments manifest in varying degrees as joint hyperextension and flexibility, a trait favorable for ease of childbirth. Mundane slip and falls, lifting injuries, childbirths and pratfalls can all injure joints of persons with loose ligaments. Prolonged inactivity secondary to injuries or illness can lead to soft tissue deconditioning. The largest joints in the axial spine, by far, are the sacroiliac joints (SIJ) which are intrinsic to the pelvis, the “foundation” for the spine. A unilateral unstable SIJ potentiates a slight scoliosis, which begets asymmetric shoulders and a slightly tilted head. Chronic widespread painful soft tissue spasms ensue. Painful Thoracic Outlet Syndrome evolves in the shoulders leading to upper extremity dysesthesias, cervical muscle spasms and tension headaches. Autonomic neural tracts contiguous with unstable and subluxing joints manifest as sciatica and an host of dysautonomias: migraine, POTS, gasrtroparesis, panic attacks attack, IBS, Interstitial Cystitis. Femaleness, multiple childbirths, mechanical injuries, prolonged convalescence, inactivity, obesity, and Hypermobility are some of the factors which contribute, in varying degrees in individual patients, to the evolution of Fibromyalgia, chronic arthralgias, joint wear, and chronic widespread pain from soft tissue spasms. Lying down imposes two body struts, pelvic and shoulder girdles, to the ground forces of the rest surface; leading to torque of these hypermobile structures and pain. Nonrestorative sleep leads to depression. Gravity is unkind to joints which have hypermobility, which is an inherited condition mostly found in women.

Audrey Lynn

I believe there is a strong link to heredity with fibromyalgia and other diseases (not all, obviously). I was diagnosed with fibromyalgia, CFIDS, and chronic myofascial pain in 1998 after a “stomach bug” hit me, but I had signs of fibro and early trigger point development since before I can remember. My parents told me about myself waking and screaming from “growing pains” at night.

At any rate, my daughter was diagnosed with fibro when she turned 16. My grandmother and great grandmother on my mother’s side also had very similar symptoms to fibro. My rheumatoid factor had gone up and down a few times since being so ill, and I have other diagnoses as well. So far my son and granddaughter are relatively symptom free, although I think I will always worry. Hopefully we will see at least effective treatments in our time.

Dooney

The only good that comes out of this is having someone going through the same symptoms and feelings you are. We are judged by our own healthy family memembers, hopefully here there will be no judgement, as sad as that is. Wish you all the best.

Kelly stroud

Glad I found this sight. I have had 3 L surgeries in 7 yrs, 2 L shoulder both knees and C 2 fusions. I went to a pain clinic and was that care of. May 2016 I had a seizure and went to the hospital. Since I was on strong meds the hospital sent Dr that I was doing and kicked me out. Now I am in so much pain I can’t get taken serious. I don’t get out of bed and when I do I go straight to the couch. Live is getting old. Not suiciel but at 55 I don’t know how long I can take it.I can see how people turn to illegal drugs. Real injuries and DR don’t care. Its not like oh Dr my arm hurts! Lost!

Rhea Bullock

I developed Fibro after brain surgery. I come from a large family and I am the only one to suffer with it. I’m praying that none of my three sons will develop this insidious disease. I’m sorry your daughter has developed it. It so hard to see our children sick.

My mother had diebetis and so do I people always think that heavy people just get diebetis.Not so my mother weight was 110 so do yourself a favor get checked .

Michael G Langley, MD

In my studies, I found that lupus and RA share the same gene. Some people with fibromyalgia have a positive rheumatoid factor in the blood. I did. But, it has now gone negative!(?) It is my thought that fibromyalgia may, also, share that gene! But, up to now, I have not seen that it has been discovered. I hope it is like chlamydial pneumonia. I discovered it six months before it was reported, in an article, in one of my “throw-away” medical magazines. But, be that as it may, I think stressful lives brings it out in people. I feel it may have happened to me, being a type B personality in a type A profession!

Liza

Thank you so much for all your comments. I typically try to say thank you individually but it hasn’t been a great few days, just trying to fight off a cold which seems to make me feel 10x worse that it should.
All your comments and stories that you share with me inspire me to continue to write and share with you. I really do believe we all comfort each other through the shared telling of our stories and maybe that is enough sometimes. To know you aren’t alone.

Linda

My question is why do us cronic pain patients have to suffer because of drug attics I’m having such a hard time getting anything for my cronic pain I moved from LA county to Riverside Calif I can’t get any doctors down her to put me back on my norcos I think it is discussting that my quality of life has been taken I didn’t asked to be born to have cronic pain in my 50s I think it’s cause of drugeys

Stephanie Scarbrough

I worry about the same thing for my daughter. She’s not going to be 8 until April, but she already has IBS, asthma, EDS, and seemingly back spasms & signs of earlier arthritis than I had. I’m happy to have her, but I hate that she’s so sick already. I’ve mostly blamed myself, because I have these issues and much more. Chronic illnesses and pain that she has are heartbreaking, but I wouldn’t trade her for anything. It is still so hard to see them hurt, it tears me up too. All my best, thank you for putting my feelings also into words!!

Barb R

Dear Liza, thank you for sharing your thoughts and experiences with everyone; I’ve been “barely living with Fibro for the past 20+ years following a 6-month bout with CFS. The Dx and Treatments went from “Not a Real Disease to Recognition & acceptance (by many researchers and practitioners) to finally the NIH classification as a REAL DISEASE. Sadly we’ve now become another group targeted by Big Pharma as vulnerable patients willing to take ANYTHING promoted by thoughtless physicians. We patients are now expected to take a plethora of untested or worse, harmful ‘new cures’ which likely are worse than the Fibro itself. I don’t have RA, even after 20 years of being tested; although one Dr. worked (“conned”) very hard to convince me to take an RA drug which half a tab made me very sick. To this day (and I know I’m not alone in this) there are still NO PHARMACEUTICAL products which have reversed the severity and symptoms of Fibromyalgia; I’ve stopped seeking a true cure for what we all have. There are no active R&D efforts to make us Well again. After the past few years working with a dedicated bright NP who’s tested me for a myriad of potential deficiencies and “red flags” I’m now intensely focused on nutritional & supplemental practices geared towards boosting my immune system and mitigating symptoms. Our lives are NOT IDEAL NOR FAIR and sadly we can’t rely on aggressive research or “cures” from our current “Health System”. I wrote this partly because you mentioned “biologics” and I’m not sure what they are — I just got a recent newsletter from Dr. Lam (specialist in Adrenal Fatigue/Deficiency and he referred to the questionable use of BIOLOGICS. I’m going to recommend him as a Practitioner with a Brain; I am going to read what he’s discussed and take him seriously because he’s specialized in the Whole Body System and presents his meaningful medical research solely for the purpose of educating patients and helping them become truly functional again. Our Adrenals seem to be at the root of many of our mysterious symptoms and conditions. I encourage everyone like us to consider his work in our particular searches for true and lasting Relief and hopefully Cure(s). His and others’ dedicated work just might lead us to Lasting Good Health. I wish you & everyone Best of Health & Happiness. Keep informing yourselves 🔆

Rachael Elisabeth Hall

I am so sorry for the suffering you have because you and your daughter are innocent victims of genetics. I, too, am an only child, but wanted my own for just a brief period when I found my soul mate – just too young for it to matter. His parents took him from me and I lost him for 15 years. I got married, like everyone else, but I had my tube station tied 3 months later – at the age of 22. (I didn’t like my first (or second) husband very much.)

My Michael found me again at 31, already well into the suffering brought on by Ehlers Danlos Syndrome. Pain management, lost of injections and even more pain meds (which actually worked decently.)

I didn’t know how devastating Ehlers was when I decided to bypass parenthood. I wish my folks had.

I’m not surprised that your daughter has the same diagnosis, my older of 2 daughters was just put on SSD. Her symptoms were since she turned 15 and not official till last year when she turned 27. The pain has been typically fibromyalgia type pain. I had been diagnosed with the same in 1996, we called it the trash can disease, then, because I was tested for many different ailments,all negative so they were thrown away and we were left with the diagnosis of Fibromyalgia. I truly believe it is a condition I was born with,like arthritis and that she was the one it was passed to. I hope your daughter finds she is like you in many ways, but we never wish that to be the ailments we have lived with all our lives. Maybe a cure is to follow for her and my daughter, now that it is a true diagnosis. Good luck, pain warrior.