Many of y’all have emailed or messaged me to ask how my little sister Betsy is doing lately. I’ve continued to be incredibly touched by & grateful for your prayers, kind words and good advice ever since Betsy fell so ill last April. However, I wanted to wait to share the latest update on her condition until she finished up at the Mayo Clinic, where she just spent 8 days being poked and prodded from every angle.
Now that she’s just home from her time in Minnesota, we finally have an explanation for what it is that’s left her so disabled and in terrible pain for the past 10 months; Mayo Clinic physicians have now conclusively diagnosed Betsy with Fibromyalgia.
In the first month or two after Betsy became sick last spring, she was diagnosed with something called Transverse Myelitis (TM). However, after that diagnosis, we learned to our dismay there is no local doctor who seems to know much about helping TM patients manage the condition once they’ve been diagnosed. Plus, Betsy just kept getting worse, despite faithfully taking the meds she was being prescribed at that time.
She was feeling desperate. She had many questions but no one to answer them. There seemed to be no path forward. Then, late last summer, an old friend of ours was able to get Betsy referred in to see a renowned neurologist at Vanderbilt in Nashville who actually specializes in TM. Betsy’s hopes in going to see him were for a second opinion on her diagnosis, and also for more information on what treatments or strategies might help her. To everyone’s great surprise, this Vandy doctor told her pretty quickly that he didn’t believe she has or had TM, and he also freely admitted that he was frankly baffled by her symptoms and test results. So he decided to run a whole bunch of new tests, including some very relatively obscure ones like checking for paraneoplastic syndrome. However neither that test nor any of the others gave him any better insight into Betsy’s sudden onset (April 2012) severe pain, muscle spasms, neuralgia, cognitive decline and fatigue, so he decided to refer her right away to the Mayo Clinic, where the docs there could review all her records from the beginning, and also examine her starting from scratch, with no preconceived opinions.
So two weeks ago, thanks to the persistence of the specialist at Vandy who was determined that someone would figure out what was wrong with Betsy even if he could not, my little sister and my mother left for 8 days in Rochester, Minnesota. Once she arrived at Mayo, Betsy was checked out in every possible way, and also, once again, all her medical records and testing results – now nearly a year’s worth – were reviewed. And after all of that, the multifisciplinary team at Mayo provided what they really feel is the right diagnosis: Fibromyalgia.
I knew almost nothing about Fibromyalgia before Betsy was diagnosed. Neither did the rest of our family. I had read about it, but only in a general way. Now, of course, we are all educating ourselves as quickly as we can. We have a lot to learn.
Getting this new, rather unexpected diagnosis after all these months was a shock for Betsy, and for us. Obviously, we all hoped that whatever Mayo determined to be the problem would ultimately be curable, while our deepest fear was that they would tell us that she had a progressive, wasting illness like Multiple Sclerosis or Lou Gehrig’s Disease – something that would eventually leave her fully wheelchair-bound before an early death.
However, Fibromyalgia isn’t either of those things. It’s a chronic, disabling syndrome (it isn’t called a disease because of the still-unknown etiology) for which there is no cure, yet. Until there is a cure, my little sister will live with “Fibro” every day of her life from now on, and she will have to learn how to best manage the symptoms. On the other hand, as radically and negatively as this illness has already altered Betsy’s life, its progression isn’t typically one that will end her life. She will live with Fibro. That’s a concept that’s hard for her and for those of us who love her to wrap our head around. We are still processing what this means.
So that’s the latest update: my little sister has Fibromyalgia. Pretty much overnight 10 months ago, she went from an active, healthy mom of three kids, ages4, 9 and 13 (at that time) to a very, very sick person with major limitations on what she’s able to do every day. She’s in chronic pain and her brain doesn’t work exactly right. She can’t sleep and sometimes she can’t walk. And at the moment, I think she’s still in some shock with this new diagnosis, and its implications.
Because there is no cure for Fibro at this time, effective treatment is focused on managing symptoms in ways that work best for each patient’s body. Bets is lucky that there is a local rheumatologist she will be able to see who is highly regarded for her successful management of Fibro patients’ treatment. But a whole lot of the motivation and responsibility for the trial and error process for developing a management strategy that works will be entirely up to Betsy herself. There’s no pill or surgery or transfusion that can do the heavy lifting for Fibro patients. That’s a tough fact to accept when you feel so physically awful and foggy in the head that it’s hard to even manage taking a shower every morning, much less plan and execute a radical lifestyle overhaul with no guarantee that any of it will even help.
My own challenge right now is to avoid bombarding Betsy with advice, information and ideas. I want to text her every blog post I find in which a Fibro patient explains how a certain diet change or medication or supplement made a big difference for her. But Betsy’s not there yet. I am a fixer my nature; I want to make things right for everyone around me – especially my family. But I can’t fix this. I really can’t. So I am trying hard right now to be more of a listener than a fixer. (I’ll let you know how that goes!)
The last three years have just slammed into our previously pretty healthy and whole family like a Mack truck. I have absolutely no doubt whatsoever that for my little sister, the grief and traumatic stress of losing Henry, to whom she was very close, and also the burden of helping to keep me from spinning completely off the rails in that first year after he died, were both part of the complex triggering mechanism for this physical illness.That’s hard for me to think about, but I know it’s true.
However, there’s no way to change what has happened. The only way through is through. Our whole family simply has no choice but to deal with what we’ve been dealt in this perfect storm of loss and illness, and to keep trying to figure out how to move forward with all the joy, grace and integrity that we can muster.
Thank you again SO much to all of you who have reached out to me and to Betsy with prayers, information, love and support since she fell ill last spring. Your kindness and support have meant and still mean more to our family than I’m able to explain in words.
I’ve suffered from Fibro since 1999. It was overnight. It went into somewhat of a remission after I had my second child. I still have flares, but not as badly and usually only when I do stupid things like stand at a concert for three or four hours (I was in bed for nearly a week after that one and symptoms declined over two weeks). So there is hope.
Sending lots of good energy Betsy’s way. (As per the inquiry-Google Chrome)
Not to bombard you with information, but you might want to look at a TEDxIowa talk by Dr. Terry Wahls. She cured herself of progressive secondary MS with a paleo-type diet, and I’ve heard it helps with fibro, too. Sending lots of strength and hugs! Also, I’m using Mozilla Firefox.
This is a tough diagnosis but I am sure you will all be supportive and helpful as Betsy learns to cope. There are a lot of good support groups online as well. (Using Chrome on a macbook)
So glad Betsy has an answer, even if it is not the most ideal one hoped for. Will hold her in my prayers. See FB for commenting notes.
I know that your sister is thankful for a diagnosis. My sister, niece, one of my daughters and I all have Fibromyalgia. I have had it for at least 30 yrs, but not “diagnosed” until about 5 yrs ago. There are so many doctors who won’t acknowledge Fibromyalgia. My gynecologist actually suggested the possibility of Fibro shortly after my hysterectomy at the age of 32. I am now 62 and each day is a challenge. Because I am very overweight, most doctors say, “just lose weight and you won’t have pain”. My current orthopedist and nerve specialist, is the one who said, “yes, it’s Fibro and as long as you are in serious pain, you are not going to be able to do much to work the weight off”. I am grateful for his care and compassion.
Beckie in Brentwood, TN
Your entire family is in my prayers!
I was disagnosed with FMS in 1999. Some days, weeks, months or years are much harder to live with. Flares are tough, but once I learned what helps me manage my symptoms, the flares aren’t as bad.
I hope with all my heart that your sister will find ways to manage — it’s very hard. No doubt. But at some point, it’s unlikely that FMS will frame so much for her in a profound way as it does now. It will, I hope, become one more thing that is part of life like glasses or a trick hip or extra sensitivity to light….
In no way do I mean that to sound unsympathetic. What I’m saying is that it DOES get better and easier. It’s a wonderful thing that you are such a loving, supportive family. That’s the very BEST healing.
I was just thinking about Betsy this weekend. I’m glad she has a diagnosis, but I also feel for her knowing she has been given a diagnosis with no cure. As someone with Type 1 diabetes, I know something about living daily with a chronic illness that can take over your life.
It does get better. It does get better even if there is no hope today for a cure.
I once read a book by Dr. Naomi Remen who lives with Crohn’s Disease that it is possible to heal even if can’t be cured, and this has helped me very much on bad days.
I’m sending healing prayers to Betsy .
Thank you for letting us know what is going on. All the best to you and your family.
I have no words, other than keep the faith…..sad to learn of this XXOO
Hi Katie -
I don’t usually play medical police, I swear, but I feel compelled to set the record straight r.e. multiple sclerosis (MS). Although it’s true that MS is a chronic, progressive neurological disease, it is not a “wasting” disease with a fatal outcome like AMS (Lou Gehrig’s disease). The degree of disability varies significantly from person to person, depending on a number of factors (including age, sex, type of presenting symptoms, etc.). In fact, the majority of patients (over 60%) will remain able to walk throughout their lifetime. Happily, there are also a variety of medications currently available that can slow the progression of the disease, which is really encouraging for those of us fighting to stay healthy and mobile as long as possible.
Anyway, sorry for the thread hijack – but I thought it was worth weighing in to clarify some common misconceptions about MS. All the best to your sister as she braces for an intense fight – with a top-notch medical team, it sounds like she’s in good hands.
@sophia – not a thread hijack at all. Thanks a lot for clarifying that, and for your kind words.
-Katie
I am so, so sorry to learn of this diagnosis. It is mysterious in so many ways, in that some people who are diagnosed with it learn to manage it and others are eventually symptom-free and there’s no definitive explanation as to why. Suddenly being in that much pain, feeling foggy-headed and having trouble even getting around after being active and energetic for her whole life must be a living nightmare. I hope Betsy makes some real improvement very quickly. Best wishes, as always, to you and your family.
(Google Chrome)
Hi,
If your sister has daughters they should be checked too!!!!! My sister in law has it and it is hereditary among the women of the family, the doctors advised her to have her young daughter checked, and she has the pre-disposition too (no guarantee when it will raise its ugly head). My sister in law has an advanced heavy version of fibro, shes been confined to be for a few months now…
Weight control is important too. My sil is very obese, and this makes the pain worse apparently. Although not even morphine works for her anymore.
So diet, movement, temp control (no cold!) and regular checks are important….hope you dont mind my butting my advice in!
sending thoughts and hope for Betsy. from someone who has been disabled from birth, I can certainly empathise though I acknowledge the experience and our conditions are different. my mother has secondary MS and has also found following a certain diet helps her a lot, and I have also read it helps for Fibro. something to look into. I hope Betsy is able to manage and most of all accept her condition as best she can. xo
Love to your family…
xo, misha
First I’d like to say I’m sorry to hear about your sister. It’s hard to see a family member in pain and not be able to help.
I was diagnosed 2 years ago with Fibro and have probably had it for longer. Mine was over night as well. I’m 34, married and no children. We are still hoping to have children. But i also have endometriosis, which has been a factor in that venture.
Fibro runs in my family, my Aunt on my mother’s side has it as well.
Her and I both are currently taking pain medication to help lead a some what normal daily life. And it is a day by day journey. I’ve been through 4 different Fibro medications. One which led to me gain 25 lbs in 2 months!!! My doctor did warn that it might be a side effect, i just didnt think it would be so much at once. Weight gain does not help this syndrome either.
I have found that a healthy diet, yoga, stretching, walking, meditation and biggest of all… Less stress!!!! All help to reduce my symptoms. Inflammation is a factor as well. I drink a juice called Nopolea, I don’t sell the stuff, I just drink a bit every day to help with inflammation. It seems to help. I am a fan of any thing that makes a difference!
Fibro is a life changer! Sometimes you feel like your 80 years old and sometimes you feel more yourself. Everyone is different when it comes to what works for them. It sounds like your sister is being treated in the right place. I will keep her in my prayers. The best thing is to be supportive and understanding. People that don’t know Fibro can be very judgmental and frustrated with the person dealing with it. Because its not like a broken leg that you can see. Sometimes the judgment of others is a stress in it self. But hopefully her friends and family can Be educated on what she can and can’t do. Be patient with her and keep a positive outlook. The hardest thing for her is not to be able to be her old self and not having someone that understands her struggles.
All my best to you and your family. Xoxo
Feel free to pass on my email address if she wants to talk to someone who’s been there. I’ve lived with fibromyalgia my whole life and have a number of other conditions that, among other things, cause a great deal of pain.
Feel free to pass on my email address if she wants to talk to someone who’s been there. I’ve lived with fibromyalgia my whole life and have a number of other conditions that, among other things, cause a great deal of pain.
I have suffered from Fibromyalgia for over 30 years so I completely understand how Betsy is feeling. Back then the diagnosis was not easy to obtain, going to many doctors before finally getting answers. It sounds like Betsy still had to see many doctors so things don’t change do they? Like Amanda, I also drink Nopalea, which is an anti-inflammatory wellness juice. My mission is to help others help themselves in their wellness and to experience a better life. Please see my website dedicated to Fibromyalgia: http://www.cactusjuice.weebly.com
Best Wishes to all of you,
Janet Weiner