The Impact of Juvenile Fibromyalgia on Families with Jara Halfen
My Daughter’s Diagnosis at 14 Changed Everything
- When you have a sick child, your entire world revolves around them and their illness and helping them get better.
- With multiple children, we have to learn to manage our energy, to step back and focus on each of them specifically, and to create time and attention for all of them.
- There is no magic bullet. The key to feeling better with fibromyalgia is really a bunch of little things that add up together, the tools that we figure out for our toolbox.
- There are options for families with kids that need that extra support, like IEP programs and the 504 plan.
- Parents, you know your child better than anyone else. Pay attention, and observe what they are going through. You have to dig deep and be an advocate for them.
- The sooner you get a diagnosis, the sooner you can find solutions.
Jara’s daughter, Lexi was just beginning seventh grade when she fell and ended up with a very mild concussion. It didn’t seem like a big deal. Soon after, she was in constant pain and fatigue. It took months to diagnose the cause and even longer to figure out how to help Lexi spring back to life. The entire family is affected when a child has fibromyalgia, but there is hope. Jara shares the tools and resources she found most helpful, and the keys that helped her daughter feel like a normal teenager again.
About Jara Halfen
Do you have an adolescent at home who is newly diagnosed with Juvenile Fibromyalgia or Chronic Fatigue? Perhaps you have a teen who just seems to have unidentifiable pain and extreme fatigue but hasn’t been diagnosed with anything specific? If you need advice on how to move forward, consider scheduling a complimentary coaching session with Jara Halfen.
Jara is a Certified Fibromyalgia Coach who partners with adolescents and their families to learn ways to cope with and manage Juvenile Fibromyalgia. A mother of two teenagers, Jara learned first-hand about living with fibromyalgia when her daughter was diagnosed at the age of 14. Through this journey, Jara has gained understanding of what fibromyalgia is, what its impact is on her daughter and the entire family, and what it’s like to be a caregiver.
Links & Resources
- Get free copies of Tami’s books at FibromyalgiaPodcast.com/book
- If you are trying to understand the ins and outs of managing Juvenile Fibromyalgia and want to consider coaching for you or someone you care about, you can contact Jara at jarahalfen.com.
- What Is an IEP? Everything You Need to Know About IDEA, IEPs, and 504 Plans. ADDitude Magazine. 24 Nov 2019.
- Dr. Melissa Congdon at MelissaCongdonMD.com and in Episode 16.
- What Your Doctor May Not Tell You About Fibromyalgia, by Dr. Paul St. Amand (the guaifenesin protocol) https://amzn.to/1LiJLHo (Affiliate link)
- EpicGenetics FM/a Test (fibromyalgia blood test)
- Below you will find both a full transcript and video of the episode, with the studies mentioned in the show linked in the transcription.
You are listening to the Fibromyalgia Podcast with Tami Stackelhouse, Episode 25.
[00:50] Welcome to the Fibromyalgia Podcast! I’m your Coach, Tami Stackelhouse.
I just wanted to pop in really quick before our interview today, just to wish you a happy Thanksgiving. I hope you guys had a great Thanksgiving, and if you are feeling a little bit overwhelmed going into Christmas and the other holidays this season, I just want to remind you to go back to Episode 22 for your Holiday Survival Guide. There are a few tips and tricks that I threw in there to help you feel less overwhelmed and get through the holidays with a little bit more grace.
[01:32] In today’s episode, we’re going to be talking with one of my Certified Fibromyalgia Coaches, Jara Halfen. Jara was one of the coaches who was at my alumni retreat back in October. You guys may remember from earlier episodes, I really wanted to interview some of my coaches while we were there, but the environment just wasn’t conducive to doing a podcast interview with good sound, so I interviewed Jara today, and I want to share that with you.
[02:07] Before we dive into today’s episode, I want to share another note that we received on Instagram. This one is from @redheaded_darling, and she says:
“Hello Tami. I want to reach out and thank you. I am recently diagnosed and found your podcast. It’s been a great way to learn about this disease and how to deal with the day to day. I’m so excited to see what you have next. Thank you so much.”
[02:37] Thank you, also, and thanks for letting me share that on our podcast today. That was sent in as a private message, so I asked if she would be willing to share that. For those of you who might be where she is, being relatively newly diagnosed, I hope that you will use this podcast as your class, so to speak, and feel free to go back to Episode 1.
[03:05] When we started this podcast, we really tried to start with the basics. I planned out what the main themes are — the main things that I teach on over and over and over again — the things to really lay a foundation for what we we’re going to be talking about in this podcast. We have the Foundations Series, which is our foundational episodes. If you go to FibromyalgiaPodcast.com, click on the Episodes link in the top menu bar, you will actually see Foundations as one of the options, and you can see those foundational episodes. You can also go back and start listening with Episode 1, and a lot of those episodes are things I talk about over and over again, key concepts, things like the fact that your body isn’t the enemy.
[04:08] I tell my story in Episode 3, and we have a discussion on what fibromyalgia is, some of the basic research and the history. I also talk with Dr. Ginevra Liptan about what she believes fibromyalgia is. We talk about self-care, the patient’s role in their own healthcare, and these are all great things for you to get a foundation for as you are listening to this podcast. If you’re newly diagnosed or just joining us, I hope that you will go back and listen to some of those earlier episodes, because they really are a good foundation, both for what you hear in this podcast and also for your own healing journey.
[14:59] TS — Now I would like to introduce you to today’s special guest, Jara Halfen. Jara is a Certified Fibromyalgia Coach. She partners with adolescents and their families to learn ways to cope with and manage juvenile fibromyalgia.
Now, many of you may have heard our earlier episode on juvenile fibromyalgia, which was an interview with Dr. Melissa Congdon, and you can find that in Episode 16.
[05:33] TS — Jara is a mother of two teenagers and learned firsthand about living with fibromyalgia when her daughter, Lexi was diagnosed in her early teens. Through this journey, Jara has gained understanding of what fibromyalgia is, what its impact is, not only on her daughter but on their entire family, and what it is like to be a caregiver to someone with fibromyalgia. If you are trying to understand the ins and outs of managing fibromyalgia, if you are considering getting some help for you or for someone you care about, I would highly suggest connecting with Jara, particularly if you have a young one in your family who needs some help with managing fibromyalgia.
[06:24] TS — As we discuss in our interview, Jara has a lot of experience in helping Lexi [her daughter] with her own schooling and managing fibromyalgia. There are a lot of things that can be done to make that journey go a little bit smoother, and I hope you would reach out to Jara if you need help with that. You can reach out to Jara directly at JaraHalfen.com. That’s J a r a H a l f e n.com and we will have that in today’s show notes.
[06:59] TS — Do stay tuned after my interview with Jara, there are several other links and resources that I want to share with you guys, and we will have that at the end after my interview. Remember as you listen, you never have to stress about taking notes or bookmarking things. We will have all of the links and all of the resources mentioned in this interview for you to find at FibromyalgiaPodcast.com/25 for Episode 25.
[07:35] TS — Hi Jara, thanks so much for joining us today. I’m so glad you could be here to share your story.
[07:41] JH — Hi Tami. Thank you so much for inviting me to be on the podcast. I’m so excited about it.
[07:47] TS — Awesome. Well as you know, a few episodes back we talked about juvenile fibromyalgia, and I thought it would be a great opportunity to bring you in and actually tell your story and your daughter’s story. Why don’t we start there? Tell us about your journey with fibromyalgia and your daughter’s. Okay?
[08:09] JH — Thank you, I will. That was a great episode with Dr. Congdon as well. I enjoyed hearing her. It was interesting.
My daughter, Lexi was just beginning seventh grade year. Right before school started, she fell from her horse. She was going over a jump, fell off her horse, and ended up with a very mild concussion. It didn’t seem like a big deal. She started back a week later to school. Everything seemed okay, but it wasn’t okay. She was having nausea, fatigue, headaches, stomach aches, all kinds of things were going on. We took her to GI specialists. We took her to her primary care doctors. Nobody could figure out what was going on.
[08:54] JH — Well, lo and behold, we ended up going and seeing a specialist, a pediatric GI doctor in Los Angeles, and he said, “Oh, it’s her gallbladder.” They did a scan on her, the HIDA scan. Her gallbladder was 90% dysfunctional, so they said it has to come out. Joy, joy. We’ve found our problem. We now know what’s wrong with Lexi. She had her gallbladder taken out that January, and lo and behold, we thought everything was fine.
[09:23] JH — She went back to school after the surgery and boom, within a few days of being back in school again, the pain and fatigue were back. She would come home from school, and she would lay down in her room. She couldn’t do anything. Some days she couldn’t even get up and get to school. From that point, we’re thinking, “What’s wrong here?” We took her back to the doctors. Nobody could figure anything out. It was a big mystery.
[09:53] TS — I bet that was a scary time.
[09:57] JH — It was super scary, because you have so many things run through your mind. You start thinking, “Well, what could this possibly be? Is it in her head?” This went on into eighth grade, before we finally got a diagnosis from a neurologist, and then a pediatric rheumatologist, that she had fibromyalgia. Before that diagnosis came through, I mean there were times where we were thinking that she just didn’t want to go to school, but that wasn’t the case. I mean, this is a girl who loved riding horses. She basically had to give up riding her horse because she had no energy for it, and she was in constant pain.
[10:39] JH — One day she was getting ready to leave. She was on the Spirit Team at school, and she was getting ready to go for Spirit Friday. She was dressed in her uniform and was so excited. She got up, got ready, went out to get into the car, so I could take her to school that morning. I’m grabbing my purse. I run out, and she’s literally sitting down, kind of in the street next to our car, and she’s just sitting there crying. I asked, “What is wrong?” She said, “I can’t do this, mom. I just can’t do this.” Getting ready took every ounce of her strength and energy, and she couldn’t get to school. At that point, that’s when I knew there is something dramatically wrong with her.
[11:25] TS — Right. When she can’t do the things that you know she really wants to do, that is not just because, “I don’t want to go to school because there’s a test today.”
[11:35] JH — Yes, yes, that’s right. It was not just some nervousness or anxiety. Like I said, we finally did find out, when I went to the neurologist in our town, and I said to him, “Do you think this could be fibromyalgia?”
[11:51] JH — I had started doing my own homework and research, and he did some testing on her. Of course by then, they had ruled out everything else. I mean, they had done blood work. They had done rheumatology. They had done a workup to see if it was arthritis, if it was lupus, if it was mono. All those things had been ruled out, and at that point the neurologist said, “I think this very well could be.”
[12:14] JH — He sent us to a pediatric rheumatologist in L.A. because we were living in a small town in California. We went to the pediatric rheumatologist. She did the sensitive point tests, where she did the touching of the sensitive points, and she said, “Yes, I believe she has fibromyalgia, juvenile fibromyalgia. “We were like, “Okay, so we’ve got a diagnosis. What do we do now? Where do we go?”
[12:42] TS — How old was she when she got that diagnosis?
[12:45] JH — She was 14 when she got the diagnosis.
[12:47] TS — That’s young.
[12:48] JH — Yes. We were so relieved to have a diagnosis, to have a name for what she had. At that point, they put her on amitriptyline and Cymbalta, and sent us on our way, and said, “Good luck.” You know, “We wish you the best.” Well, the amitriptyline and Cymbalta combination did end up taking care of her pain, which we were thankful for, but she spent another two years after that basically in bed, homeschooling, not riding her horse, not going and doing normal teenage activities with her friends because of the fibromyalgia. They couldn’t tell us what to do at that point for the fatigue.
[13:33] TS — Wow. So how did that affect your family? Because she was only 14. That’s pretty young.
[13:43] JH — It had a big effect on us because a lot of our time — me as her mom and her primary caregiver, and her dad — we were both pretty busy researching and trying to figure out what was going on with her. There was a lot of worry and a lot of stress. There were times from age 14 to about 16 where we even wondered if she was going to get through high school, if she would even be able to get her high school diploma, let alone go to college or have a career or support herself and do all the fun things in life that we want [her] to be able to do. That took an emotional toll. It was difficult for her. It was difficult for us. We have a son who is two years younger than Lexi, and it took a toll on him because he had a sister that was sick all the time.
[14:41] JH — You might be ready to go on a family vacation, or you might be ready to go out for a family dinner, and she couldn’t make it. She couldn’t do it. That changed everything. It changed the dynamics. A lot of time and attention was focused on her. A lot of money was spent on her because, as most people out there know, insurance doesn’t cover a lot of treatments. We have coinsurance and deductibles. We had a big financial hit that directly impacted the family. I think those are all things that people just don’t realize, the total impact of it, until they have a sick kid.
[15:21] TS — Your whole family life basically revolved around her and her illness.
[15:26] JH — It did. We spent a lot of hours traveling at that time, before we moved to Tucson, Arizona. Since then, we have easier access to specialists and different providers here. When we lived in our little town of Bishop, California, we’d have to drive a minimum of three and a half to four hours to get to any kind of a specialist. We really struggled. In fact, that was a big component, a big reason why we actually moved from our little hometown that we loved. We came back to Tucson because Lexi really needed more healthcare services than what we had available to us there. That was a huge impact on our family. It’s been an okay thing. You know, there were other reasons that we had decided to move as well, but that was one of the big major ones. You talk about an impact that families face, from maybe having to move, to having to come up with money and resources that they never dreamed that they’d have to come up with.
[16:34] TS — How were the dynamics between between her and her brother, with all of the focus and everything being all about her? How was their relationship? Can we talk about that?
[16:51] JH — Yes, we can. They have been very close. They’re 23 months apart, actually 24 months apart, and they’re very close. There was, and even now there are periods of time where her younger brother feels like he hasn’t gotten as much. Like he hasn’t gotten as much attention or as much time. We’ve really had to step back and focus on him specifically and create time and energy for him. We even did things to help my daughter keep her motivation and to keep her inspiration going, and to give her that light at the end of the tunnel. We actually kept her horse and kept hoping that she’d be able to get back into riding and taking those lessons. We spent a lot of money keeping that little light for her. In actuality, that was a lot of time and money. My son will say sometimes, “Well, Lexi had a horse all those years, and so now, when I turn 16, can I have a sports car?”
[18:08] JH — The key thing that we’ve learned is you’ve got to really — as a caregiver or as a parent — you have to protect your own energy to a certain extent, because you have to normally give that energy to the child who is sick in your family, but you still have other kids and other commitments. My son still needed time and attention in different ways. We had to really learn how to focus and give him that special time and attention, so he understood he was just as important as his sister who was sick. Most people, if you’ve got sick children, you don’t quit working. You don’t quit parenting your other children. You don’t quit being a spouse or a daughter or a son. You still have to maintain all of those roles while also working with your sick child. It was quite a challenge.
[19:12] TS — No kidding. Tell us… She got her diagnosis. Where did you guys go from there as a family?
[19:22] JH — Well, where we went from there, after the diagnosis… As I said, the pain was under control fairly quickly. We were very blessed that the pain was under control, but the fatigue continued. We moved to a bigger city. We moved to Tucson, and we found a new neurologist. We actually took her to see him. He is a part of her clinical team of providers and doctors, and he did some blood work on her and realized that she was very low on CoQ10 [Coenzyme Q10]. He gave her the prescription — basically to go on CoQ10 — and within weeks her energy level started to come up.
[20:08] JH — She was finding that she was able to get out of bed for a few hours during the day. She could even go and ride a horse every once in awhile. There were little pieces like that. We also found a naturopath that helped her to figure out her thyroid issues. She had thyroid issues. Lo and behold, she actually has Hashimoto’s. Our functional medicine doctor helped us to discover there are supplements and things that she could take to help with her thyroid. That started helping her with her energy. There were all of these little incremental steps that we started taking, through suggestions of her healthcare team.
[20:51] JH — Another thing that was awesome in that process was we got to work with a coach. We worked with Kate Straus, who you set us up with, when I joined IFCI. You introduced us to Kate, and we worked with her as a Fibromyalgia Coach for my daughter.
[21:11] JH — One of the biggest, most important things that Kate did for us was she helped Lexi with her sleep, because Lexi hadn’t been able to sleep. She would maybe fall asleep and wake up, or have trouble and maybe never fall asleep and stay awake all night. Well, lo and behold, we discovered the key in working with Kate, that taking the Cymbalta at night didn’t work for Lexi. It was almost more like a stimulant. We switched her to Cymbalta in the morning, and that helped her a great deal with being able to start sleeping. Again, all of these little incremental pieces that we pulled together started creating a child who could actually start attending school, riding, doing more normal things that teens expect to be able to do.
[22:02] TS — That’s awesome. That is a huge thing. We talked about this when we interviewed Robin a couple of episodes ago, was that “you don’t know what you don’t know.” So often, having those other perspectives to give you, “Oh, have you tried this? What about what about moving your Cymbalta to the morning instead of at night?”
[22:26] JH — Right? This sometimes it’s just the simplest things, but a lot of times when you’re in the middle of all this, you can’t see the forest through the trees. It’s good to have a team of people that you can rely on who can help you. I always tell people when I talk to them on the phone, that fibromyalgia symptoms are very similar across the board, but treatment varies by individual because there are so many things out there that you can do to feel better. The key thing is to find out what specifically works for you, or what specifically works for my daughter. It may be 10 different things that you implement that end up giving you that energy and giving you control over that pain again, but it’s going to be specific to each individual.
[23:18] JH — You know, CoQ10 may not be something that would work for somebody else. Magnesium has done wonders for [my daughter], but that may not be something that another child would need. I was fortunate to be able to coach a young woman recently, and one of the biggest things that we discovered for her was adding protein into her daily diet. She really hadn’t been eating much at all, not even a lot of calories, so she wasn’t getting much energy from food. At the point we started adding protein in, that made a huge difference for her.
[23:59] JH — Another thing that’s really worked wonders with helping my daughter to get her energy back is cutting out gluten. She’s gone 100% gluten free. I mean, you know, she’s a teen. She will go out with her friends and have pizza, but for the most part, she manages her gluten, and from day in and day out and she doesn’t eat much gluten. It’s kind of a once in a while thing, and that has done a tremendous amount to help her with her energy. With all of those little incremental things, we were able to learn and muddle through and figure out. Now, she’s got her toolbox of things that she relies on to feel good.
[24:43] TS — One of the things I’ve heard you said a bunch of times in our interview here, was talking about incremental things, and I just really want to highlight that for everybody who’s listening. I think so often people are looking for that one magic bullet that’s going to make a massive difference in how you feel. The reality is — feeling better with fibromyalgia is really about a bunch of little things that add up together.
[25:10] JH — Right? That is exactly right. I love how you refer to it as the tools that we figured out for our toolbox. People need to get to the point where they figure out what works for them. Magnesium baths do wonders for some people. For others, not so much. It is important to work through and figure out the combination of things that work for your body. We were lucky enough to do that, and Lexi has done really well. She’s actually graduating from high school in December of 2020. That’s only one semester later. It was going to be in May of 2020. She’s going to school one extra semester, but considering all that she had to miss, we are so fortunate that she’s going to be graduating and only one extra semester longer.
[26:08] TS — That’s amazing. It is.
[26:10] JH — It is. We just took the point of view that “Hey, you know what? There is no rush to get to life. There is no rush to get through high school. There is no rush to start college or get through college at a certain length of time. You know, we’ve got years ahead of us.” It was nice to be able to figure out with Lexi what worked for her, so she could start really pursuing her dreams. She’s going to be graduating. She’s actually taking community classes now at our Pima Community College. They’re dual credit classes. She’s getting a jump start on some of that.
[26:45] JH — She did ultimately give up riding her horse. She had a secondary diagnosis when she was 16. She was diagnosed with a connective tissue disorder. It’s not Ehlers-Danlos, not Marfan’s, but they know it’s some sort of a connective tissue disorder. They just don’t have a name for it. That has required her to go through a couple of different surgeries. She had a lot of cartilage overgrowth in her ribs that had to be taken out. Her foot literally went flat within a month or two. It just collapsed. She had to have that rebuilt. It’s for those reasons that the surgeons have recommended she not ride anymore, because she could do damage to that foot again or to the left rib cage. As far as the fibro goes, she’s managing, which is amazing.
[27:44] TS — That’s great. How old is Lexi now?
[27:46] JH — Lexi is going to be 18 this weekend.
[27:52] TS — Ah, that’s great. Four years from diagnosis to…
[27:57] JH — Yes. Management. She is now working part time. She’s got her own little dog walking business, and she dog sits. She’s going to school and doing all of those fun things now. I don’t homeschool, but we do go through a homeschooling program that is just like a normal accredited high school, and you can do it from home. We found that was the best. She tried both ways. She attended high school, and she has done the homeschooling program. For her, homeschooling was just a little bit easier. Those days of walking across campus and getting there at 8:00 a.m. and leaving at 3:30 in the afternoon, and walking back and forth, things like that. It just didn’t work out as well for her. That’s another thing that we’ve done that’s been really helpful. Another tool. Yes.
[29:00] TS — Another tool in the toolbox. That’s one of the things that I did want to mention to people real quick. Jara is a coach, we’ll talk about that in a second. She does coach juveniles with fibromyalgia and their families. One of the things that she can really help with is figuring out all of this school stuff. With all of the things that they’ve gone through in their family with Lexi, and figuring out the best way for her to attend school. Like she was just saying, figuring out the homeschooling. Do you want to talk a little bit about some of the tools and options that are available for people who might be looking for that?
[29:38] JH — Sure, of course. I’d love to. There are options for families with kids that need that extra support. They are actually like IEP programs, the independent education plans, and those are under the Civil Rights Act. There’s actually an IEP that can be put in place for kids, and that’s typically more for kids who might need like physical therapy or speech therapy. They might have some learning challenges and things like that.
[30:11] JH — There’s also something called a 504 plan. I would highly recommend looking into getting your child on a 504 plan if your child has something like fibromyalgia or chronic fatigue syndrome. The 504 plan is not as difficult to get your child on. It’s a pretty simple process. It basically allows the school to work with you and come up with a plan to help your child get through days of school.
[30:47] JH — There are those little added things that help. Such as for my daughter, she gets extra time to turn in assignments, because she might have a flare. If something’s due the next day, she may not be able to get to it, but she’s got some extension, a grace period on those assignments. Sometimes people have 504s in place when their kids might need breaks throughout the day. Having a 504 in place with your school, it’s a joint partnership between you and your child and your school. At that point, personnel and teachers understand that this child needs to go and lay down for 10 minutes. It’s okay. That child can just get up, go to the nurse’s office, and lay down. There aren’t any questions asked. It’s not a big deal.
[31:41] JH — We always had a lot of support from Lexi’s schools. When she was in middle school and we were figuring all of this out, they worked with us, but we didn’t actually have an official 504 in place, and I regret that. It was an awesome school. They helped us, they worked with us, but there were one or two teachers that just didn’t know what fibromyalgia even meant. They didn’t believe in it. They doubted her. It would have been nice to have had a formalized plan in place, because then everyone knows what they have to do, what their role is in getting through the week of school, from the parents to the kids, to the teachers.
[32:27] TS — Absolutely. I can imagine that, I mean, being somebody who lives in a fibro body, right? Like sometimes we need to get up and stand and like wiggle around a little bit, not just sit in one place for an hour or whatever. You know, wear sunglasses because the lights are too bright or whatever. Those things might not be looked upon so positively if you’re in a school classroom.
[32:56] JH — Exactly. Teachers are dealing with so many students, and they don’t know what’s going on with each individual student. This just helps to clarify. It makes it much easier to accomplish the goals that need to be accomplished and to get through the school.
[33:17] TS — For those of you who heard our earlier episode, Episode 15, where we talked about work accommodations and getting these kinds of accommodations as an adult in your workplace, this is like the child’s school equivalent of that.
[33:33] JH — Yes, it is, exactly. Your child may need protein and frequent snacks throughout the day to keep their energy level going. Well, if most teachers don’t allow food in their classroom, that can get kind of sticky and tricky, you know, so again, 504. We’ll help you define what your child needs and the teachers and the administration then understand — okay, this is for medical purposes.
[34:03] TS — That’s excellent. I know that there are a lot of people out there listening to this who probably have kids that fall into this category. You know when I [was younger], this is the kind of stuff I could have used. I wasn’t diagnosed with fibromyalgia back then, but if it was happening today, I probably would be. I see it. It’s just that back in the 80s, we weren’t diagnosing kids with fibromyalgia so much. We weren’t even diagnosing adults in the 80s.
[34:35] JH — Precisely. I was reading something just the other day, and they’re estimating that as high as 6% of school age children might have fibromyalgia. That’s almost 15 million kids in the United States. That’s becoming more common of a diagnosis now with rheumatologists. Pediatric rheumatologists are diagnosing it more and more frequently because it’s becoming better understood. A lot of times, kids have growing pains. My daughter always had growing pains, and you know from listening to Dr. Congdon a couple of weeks ago, there are no such things as growing pains. You know, babies grow tremendously within the first year and it shouldn’t hurt to grow. As people become more educated, as physicians become more educated about what fibromyalgia is, or what it presents, the diagnosis is becoming a little bit more common.
[35:34] TS — For those of you who may have missed the interview referred to with Dr. Congdon, she is a pediatric physician who specializes in fibromyalgia. She does also work with adults with fibromyalgia, but she was trained as a pediatrician, and you will find her interview at Episode 16. FibromyalgiaPodcast.com/16. Her interview is all about juvenile fibromyalgia, and she talks a lot about how that’s diagnosed, what signs to look for with your children, and what to do if you notice some of those signs. I also highly recommend connecting with Jara if you’re a parent listening to this. She has a lot that she can help you with and share with you from a parent’s perspective, as someone who has raised a successful young woman now with fibromyalgia.
[36:40] JH — Thank God. A lot of God’s help and support from reading your book and training from everything I learned about fibromyalgia in your classes. It’s really been quite a miracle that we’ve come to where we are. There were times when we were wondering, “What is this child’s life going to end up being like?”
[37:05] TS — It’s got to be the scariest thing ever for any parents, looking at their kid and thinking…
[37:12] JH — It’s frightening, and it’s frightening for them. I mean, she went through some times of being really very sad. There weren’t proms and there weren’t the football games. She’d go to a football game on a Friday night, and she might be in bed for the next week. It’s very hard for the kids, especially those who are dealing with it and trying to lead what they perceive as a normal life for a teenager. They see that they’re missing out on things. That’s heartbreaking for the parents and caregivers to see as well.
[37:54] TS — Playing “what if” is a dangerous game. At the same time, I’m thinking about the people who might be listening, who may have teenagers, or younger even, diagnosed with fibromyalgia — what advice would you give them, and what difference do you think it would have made for Lexi if you had gotten the right help early on?
[38:20] JH — Well, one thing I’m thankful for, I’m thankful for a lot of things, but one thing in particular is that we figured out that she had fibromyalgia at an early age. I mean, some kids as young as five years old have been diagnosed. I believe there were things going on with her at that age. The younger you are, the more empowering it is to have that diagnosis, because then you start figuring out your body at a very young age and what works for you. I think we were actually blessed to find out at 14 that she had fibro and to have an answer. My advice would be to parents and kids is — parents, you have to be an advocate. You have to fight. You’ve got to be an advocate. You can’t leave any stone unturned.
[39:16] JH — You have to dig deep. You know your child better than anybody else, better than any doctor or physical therapist. You know your child. Be paying attention and observing and seeing what your child is going through. For parents and kids, there will be answers. You can manage this fibromyalgia, even chronic fatigue syndrome, all kinds of things. You can learn to manage and function and thrive and have a life. There is hope, and I guess that would be the main thing I’d want parents and kids to know. Parents: advocate, be there, observe, talk to those physicians, research, make those phone calls and know that there is hope that it can be okay.
[40:13] TS — That’s awesome. That’s so true. There’s so much out there that points in the direction of not having hope, but you guys, you can have an awesome life. Fibromyalgia doesn’t have to be the end.
[40:29] JH — It doesn’t, and some people are fearful of being labeled. They don’t necessarily want to have that diagnosis because they don’t want to be labeled. The sooner you know what you’re working with and dealing with, the more quickly you can find the resolutions to all the different things that you’re dealing with. If your child has GI problems, there are so many things that you can try and work with and figure those things out — and better at a young age. There have actually been some studies showing that a lot of times when kids, adolescence, preteens and teens are diagnosed, they really end up almost being symptom free as they get older, because they’ve learned how to manage everything.
[41:17] TS — Like any illness, if you let things go too long, all those problems just sort of add up and compound, and you end up with more problems. If anybody listening to this is noticing anything in their child that suggests fibromyalgia, don’t hesitate to get them help. We want to get them as much help as we can early on, because that gives them the best hope for a more normal future.
[41:49] JH — That’s right. Then they feel empowered. They feel like they have some control over their lives.
[41:55] TS — As you were talking earlier about making sure as parents, leaving no stone unturned, getting yourself educated, what have been the resources that have really been helpful for you, both as Lexi’s caregiver, and also just for you personally?
[42:16] JH — Hands down, when I discovered your program, that empowered me. When I was able to join your program and get trained as an Advisor, and then I was a Coach. That was empowering for me personally, because I started understanding that there were so many things that people can do for their fibromyalgia.
[42:45] JH — Another thing that’s helped me personally is belonging to support groups. There are some support groups. For example, on Facebook there is a support group, parents of teens with chronic illness, and that has helped tremendously to realize I’m not alone out there. There are a lot of parents out there who are trying to figure out what the best thing is to do for their kids, and how to keep their kid’s spirits up, and to keep the energy going, and to keep the motivation going. That was really helpful for me.
[43:21] TS — Awesome. I do want to remind you guys, we will have links to these things in the show notes. For today’s show, you want to go to FibromyalgiaPodcast.com/25, this is our 25th episode, we will have a link to that Facebook group. Jara, if you want to send that to me, I can link to that. We’ll also have links to the other episodes that we’ve talked about, and how you can connect with Jara if you want some help with some of those other things we’ve discussed. Any other books or resources that have been particularly helpful for you guys?
[44:00] JH — There’ve been some other things. Actually, we met with Dr. Congdon, and Lexi was going to start the guaifenesin protocol. I’ve worked with some people who are on the guaifenesin protocol. It’s really awesome when it works. It works, and she’s had so much success with that. We ultimately didn’t do that for my daughter, because about the time we were going to start her on the guaifenesin protocol, she was diagnosed with a connective tissue disorder, and Dr. Congdon said, “There’s just too much going on right now. Let’s put this on hold.” Now we don’t really need to do the guaifenesin protocol because what we are doing, Lexi is doing great. She’s managing. That was super helpful, reading about the guaifenesin protocol and meeting Dr. Congdon.
[44:50] JH — We also went through EpicGenetics. We did their blood test, the FM/a blood tests, because there again, you want confirmation, you want to know. For us, we needed confirmation.
[45:07] TS — I remember having conversations with you. Didn’t you get some people saying yes, she does [have fibromyalgia] and some people saying no, she doesn’t, she’s got something else? There was a lot of confusion about what is actually going on.
[45:20] JH — Precisely. Because the connective tissue disorder mirrors fibromyalgia. The thing is about the tender points — Lexi had the tender points. She had, I think, five of the 18 tender points. Lexi has a very high tolerance for pain, which is kind of weird with fibromyalgia because you’re highly sensitive to pain. She does have a high tolerance. Someone touching those tender points isn’t the same for her.
[45:51] JH — Yes, we were getting mixed diagnosis, and people weren’t sure, so we went through EpicGenetics and the FM/a blood tests — at the time, they weren’t covered by insurance. I think now a lot of insurance companies are paying for that information because once again, once you have information you’re empowered, and then you quit spinning your wheels, and you quit spending money on more testing, or spending your money on treatments that really aren’t going to pertain or be useful.
[46:29] TS — Right. Yes. That’s great. We will link to all of these things in our show notes today. We will link to the FM/a test and that fibromyalgia blood test. There are others out there as well, but we’ll link to that one. Also links to the other episodes and resources that we’ve talked about.
[46:51] TS — Now Jara, what is the best way for somebody to connect with you either for help or just a listening ear, someone who knows what they’ve gone through.
[47:05] JH — Well, I am available to be anything like that — a listening ear, if you want your teen to talk to me. Lexi would even be willing at some point, just to provide some inspiration and some hope. You can contact me at JaraHalfen.com is the link to my website.
[47:36] JH — I’m actually in the process of interviewing families about their fibromyalgia journey. If any of you are interested in talking to me a little further, I want to find out more about other families’ experiences with fibromyalgia in their teens. I’ve got a short questionnaire. It’s not a lot of time, but I’m just really interested in finding out what everybody’s experience has been. From that information, I’m hoping to figure out ways to really reach out to those teens and their families, and provide help and services and information and advocacy. You know, there are so many things that we can do together.
[48:25] TS — Yes, definitely. Yes. If you are listening and you have a child who has fibromyalgia specifically, but even if they have another chronic illness like chronic fatigue or anything like that, juvenile RA, please do reach out to Jara. She’s doing those interviews for several reasons. One, just because there is so little information out there for those kiddos with fibromyalgia, and it is sometimes a little bit different than everything we talk about with adults. There are other issues, other special circumstances we have to talk about when it comes to our kids and just getting more information.
[49:12] TS — Also figuring out what the gaps are, like who is helping you, where are you getting help and what are the areas where you still need help, so that we can maybe put some of those resources together. Jara has gone through a lot. She would love to help you with and also get help from you so that we know how to help more people.
[49:35] JH — Yes. Just let your kiddos know… (It’s mostly girls. The diagnosis for fibromyalgia for preadolescents is a mix between boys and girls, but as you start going into the later teen years, it’s mostly girls that are diagnosed.) Just know that there is hope. It’s not a death sentence. It’s not a life sentence, that life is not going to be something where you can’t flourish and do everything you want to do. You just have to figure out the different ways then to do it. There is hope.
[50:22] TS — Awesome. Well, thank you so much for being here, Jara. Everybody stay tuned. I’m going to have a few more resources for you after we wrap up our interview, and I’ll let you know some of the upcoming episodes over the next few months. We’ve got a lot of really great things coming up, so stay tuned for just a few more minutes. We’ll have that for you.
[50:43] JH — Thank you, Tami.
[50:46] TS — Thanks so much for listening in to my interview with Jara. I’m going to give you all of the links and resources that we mentioned in today’s episode. Remember you can go to FibromyalgiaPodcast.com/25 to see all of the links, notes, and resources for today’s episode.
[51:09] Episode 16 is the episode where I interviewed Dr. Melissa Congdon on juvenile fibromyalgia. In that episode, we talk about how fibromyalgia is diagnosed in juveniles versus adults. She talks about how to look for signs and symptoms, what to look for. There are also some tools that I have created for you to help track those symptoms and the things that you’re noticing in your child. You can find all of that information at FibromyalgiaPodcast.com/16.
[51:50] We also talked about the family medical leave act, in case you have to take time off from work to take care of your child. You can find information on that in Episode 14. In that episode, I have another of my coaches, Julie Hamilton, and she talks about using the family medical leave act for fibromyalgia. A part of that actually does cover you if you have to take time off work to take care of a child who is sick. Make sure you listen to that episode as well. That’s Episode 14, FibromyalgiaPodcast.com/14.
[52:34] In Episode 15, Julie and I talk about requesting special work accommodations. This is really more about you, if you have fibromyalgia. In listening to this episode, if you thought, “Oh gosh, it would be awesome if I could have something like that for me at work.” That is Episode 15.
[52:56] Episode 15 might also give you some ideas for things that you might be able to request as accommodations for your child. With fibromyalgia bodies, there are a lot of similarities there. There may be some things in that episode that give you ideas for ways that you could adjust your child’s “work environment”, that’s Episode 15. FibromyalgiaPodcast.com/15.
[53:27] We also talked about the 504 form and the IEP, the individual education plan. We will have those links on the show notes page. Unfortunately, I don’t have them to read to you right now. Jara has to look up that webpage for me, but we will have it in the show notes. Go to today’s page, FibromyalgiaPodcast.com/25, and we will have that link there for you.
Of course, you can also reach out to Jara for help with this. This is part of what she does with her clients, is help them fill out these forms, and know who to go to, and figure out what kind of accommodations to ask for, for your child. You can reach Jara at JaraHalfen.com. By the way, that web address is slightly different than the one that she gave you in the episode. That is a correction. You know how it is sometimes when you are being interviewed and are a little bit nervous and a slip of the tongue. Use that website to connect with her.
[54:44] If you are interested in working with Jara or having Jara work with your child, or if you’re just looking for a coach in general, maybe for some of that kind of help that Jara talked about, you can request to be matched with one of our coaches.
[55:06] We have all kinds of coaches all over the world, lots of different personalities, backgrounds, lifestyle, education, everything from coaches who were nurses or parents or with fibromyalgia themselves. We have lots of different kinds of coaches, and we would love to match you up with someone who can help you with your situation. You can do that at FibromyalgiaPodcast.com. Just look under the contact menu, and you’ll see the Find a Coach option. You can fill that form out, and we would love to match you up with someone who could help you, and you’ll find that out there.
[55:56] We also mentioned the blood test for fibromyalgia, the FM/a Test, and you will actually find that online as well. We’ll have that link for you in the show notes.
[56:11] We also talked about the guaifenesin protocol, which is something that Dr. Congdon does and mentions in her interview. There is a lot of information on Dr. Congdon’s website. We will link to her website as well. You can connect with her for additional information.
[56:33] All right. If there are any other things that you guys are looking for in regards to this episode, we would love it if you would just reach out to us. You can connect with me, or you can connect with Jara. She is interviewing families who have children with fibromyalgia, to see what kind of resources are needed, so that we can help provide that and fill in those gaps for some of those things you might be missing. Please do reach out to us. You can do that at FibromyalgiaPodcast.com under the Contact menu, or you can reach out to Jara through her website.
[57:13] I also want to let you know what’s coming up [in future episodes].
[57:16] The next episode will come out on Christmas Eve. Yes, we will have an episode on Christmas Eve, and we are going to be talking about faith and fibromyalgia. When you are diagnosed with something like fibromyalgia, it can really be challenging to a lot of things. It can challenge your identity. It can challenge your relationships, it can challenge your ability to work. Of course, it can also challenge your faith.
Whatever your faith might be, what your beliefs might be, believing in something bigger than you, that can be challenged when you are diagnosed with something like fibromyalgia. That is what we’re going to be talking about in our next episode. I, of course, will be speaking from my background, my Christian background, but I do believe that there will be a lot of things in our next episode that will speak to a lot of you.
[58:28] So much of our identity is tied up with who we are and what we can do, how we practice our faith, what we may or may not be able to do any longer. The world is very centered around people who can do things more than it is centered around people who can’t do things. That applies even to the way that we practice our faith, in our churches, our synagogues. We are going to talk about that in our next episode.
[58:59] In future episodes, after the first of the year, we’re going to be talking about fun New Year’s things, like building new healthy habits, breaking old bad habits, setting goals, New Year’s resolutions. All of that kind of stuff is going to be coming your way in January.
[59:18] We’re even going to be talking about how to exercise with fibromyalgia. Yes, there is a right and a wrong way to do that, and most of you have probably never been taught the correct way. Which is why when I say the word exercise, you probably stopped the podcast right there. We’re going to be talking about that anyway, to give you guys the tools to be able to do that effectively, if that is something that you’re interested in.
[59:48] We also are going to have our next “Ask the Coach” coming up in just a few episodes, and I would love to get your feedback on what questions you would like me to answer as part of that “Ask the Coach” episode. I do choose that based on what I receive from people. Don’t wait for someone else to send in their suggestions, because I do look at what suggestions get the most votes. Be sure and send in your thoughts and your questions as well.
[01:00:22] With that, I’m going to go ahead and wrap it up for today. We’ll see you guys back here in a couple of weeks as we talk about faith and fibromyalgia. Have a good couple of weeks. You guys. Bye!