[Norman] Hello everyone welcome to Men With Fibromyalgia! This is a transcript of the live event on January 10th, 2017 with the International Best-selling author Tami Stackhouse. See the full video below.
We’re gonna be talking about, not only her current best seller, but her new bestseller that’s going to be coming out. I say new after that first book being a best-seller well we gotta have a second one right?
[Tami] That’s Right!
[Norman] Exactly! Now Tami is also a Fibromyalgia Coach, But she is one of the original, actually I should say she is the original Fibromyalgia coach, and also started the International Fibromyalgia Coaching Institute! http://fibromyalgiacoachinginstitute.com/
So Tammy welcome thank you for joining us.
[Tami] Yes, my pleasure
[Norman] We’re glad to have you! So tell us a little bit about what Fibromyalgia coaching is, and why you feel that having Fibromyalgia yourself, how coaching is beneficial to other people with Fibro?
[Tami] Absolutely and I actually got into coaching because I had a coach. So I was diagnosed with Fibromyalgia in 2007 and a couple years after that I was talking with my doctor I was just so frustrated that over the two years from when I was diagnosed when we have this conversation things just kind of kept going downhill right I was I was gaining a lot of weight all my medications had a side effect of weight gain. So I didn’t see any, any hope of that turn around anytime soon.
I was just just really frustrated and one of the things my doctor suggested was to work with a health coach. So I did and that just changed everything for me it helped me implement all those things that my doctor was telling me to do.
Like going gluten-free, and making sure I got enough sleep, and eating better, and you know all those things that we need to do. But having a health coaches support actually helped me do that!
So after I started feeling better it was a natural choice for me to become a coach. At first I started working with just anybody like a lot of health coaches do. But I found that my zone of genius as you might say, was working with Fibromyalgia patients because I had discovered and come up with all sorts of tricks and easier ways for me to do things. So being able to share that with other Fibro folks that you know really made a difference. So all those things that I just said that’s actually what a coach can help you with.
So we, just like a baseball coach or a business coach, we help you look at what you’re doing in your life and make the changes that you want to make. So whatever your goals are your coach doesn’t set them for you. You set them. Quite often we go with recommendations made by your doctors or providers. We help you implement those things.
Like I said dietary changes, or even little things like if you go to the physical therapist and they give you exercises to do but you have trouble following through with them, right?
We’ve all been in that scenario where you show up for your appointment and you’re like, “Oh my gosh I didn’t do anything!”
Your coach cannot kind of help you, One keep you accountable, but also help you troubleshoot why it might not be working.
So are there things that we can do to build it into your schedule? Are there other things that we can do just to make it easier? Reminders or when you do it or tying it to a habit that you already have, those are the kinds of, things that coaches are trained in. Now Fibromyalgia coaches, are coaches who specifically work with people with Fibromyalgia.
So my coaches are also trained with all the different possible treatment options and test that you might want to ask your doctor to run.
Because a lot of doctors don’t always know what to check for. Other things that might be contributing like, thyroid or adrenal conditions. So we can kind of help guide you into the the conditions that maybe have been overlooked that are contributing to your pain and fatigue. But also treatments that might work for you.
Particularly because of your personality or lifestyle or symptoms.
[Norman] Well I know that many of us depending on the treatment. We all react differently to different treatment’s, so the fact that we can tailor each person’s Fibromyalgia, to me that say’s a lot about your own study. As well as the way you help the patients!
So let me just interject real quick here. Of course this is a live Q&A if you’re watching on Tammy’s page, on the #SupportFibro, page which is the International Support Fibromyalgia Network here on facebook. Or on the Men With Fibromyalgia page, or YouTube channel. Were monitoring all three of those to answer any questions you have! Their is one person watching right now,his name is Blaine. He’s in a bit of Fibro flare this morning. So what he did was he actually sat down wrote some questions out, and then emailed them to us beforehand. So I’m gonna pull this up real quick.
If it looks like I’m not looking at you Tami me it’s because I’m reading. But let me read this off, because being Fibromyalgia Coach,I think this is really one that would give us an example of how it is you work with your clients.
This is from Blane: “To put general questions out to you without knowing my background, would not be fair. So please share my story. As there might be more men like me out there. And please let people know they’re not alone!” Blane thank you very much for that!
Because the biggest thing in the Fibromyalgia network of friends is, YANA – You are not alone, you’re not going through this alone and we are here to help you so I’m really glad you said that Blaine! So Blaine was diagnosed three years ago, and since then he has found he cannot take any of the standard prescribed medications due to adverse in severe reactions. Some of these reactions have been life-threatening.
His conditions have been complicated by full-body neuropathy, with moderate to severe peripheral neuropathy. Complicated by heart condition that will need a valve replacement sometime in the next five years or so. Exercises out the question as I can’t even clean my own home without excruciating pain in my feet lower legs back. Then because of that pain, my migraines get triggered! His doctors have tried several things such as vitamin regimens but any pill form has no effect on his condition.
It only causes some stomach problems. A b12 shot only lasts about an hour or so, then he’s back to his normal pain level, and his insurance will not allow more than one shot a month. The three things he has found that helps give him relief is, epson salt soaks for his feets and hands… feets and hands… Wow!
Their is a little but of Fibro tongue for you! … He has a prescription creme, voltaren-gel that actually I use that its anti-inflammatory cream does work for me.
He sometimes mixes it with icy hot and a heating blanket that covers himself or heating pad for his lower back.
His case was used as a no-name case for the state legislature of Ohio, Just one of the many thousands of people who desperately need medical marijuana as a source of help, to get away from the big pharmaceutical medications and and the morphine’s. His Doctor and he, are pretty much of a loss. He is hoping you might have something that we have not thought of, or has not been brought up to me before that will not destroy me financially a wellness doctor wanted me to go on a vitamin regimen,that my insurance did not cover. That would have been completely out of pocket cost of two hundred dollars a month. Just about the same amount we have set aside for our grocery budget. I think really his big question is. Other than big pharmacy, what can you offer, other than vitamins that’s not going to break his budget?
That’s really the way I am reading this.
[Tami] Right right, exactly. So there was a one thing that jumped out to me that I would say right off the bat. That’s about the b12 shots so it sounds like what you’re doing right now is going in and maybe getting the shot at the doctor’s office which is why maybe it’s only covered once a month.
This is me reading between the lines so if if I’m wrong on that forgive me but one thing you could maybe check on in regards to that is seeing if you could get actually a prescription for the liquid vitamin b12 just get the little vial and get the syringes and get the shots yourself or have someone give them to you.
I actually did that for a while my my husband had the pleasure of shooting me in the butt with b12 for a couple of months you know once a week you would give me a shot. So if you find this …
[Norman] Is there any way you can load that in like a BB gun or something? ..
[Tami] Like those who you know the Star Trek things that don’t even have any needles that’s that’s my my goal! The other thing to look for with b12, and maybe the reason it hasn’t been as helpful as it could be for you, is that a lot of us with fibro have a genetic defect that affects have a genetic defect, which effects our Methalation cycle. So when you look for b12 you want to make sure that you’re getting the methyl version of b12. So when you look at the bottle and you see where it actually lists out and the the chemical name for the for the vitamin most you’ll see cyanocobalamin, cyano like cyan the color. You actually want to get methyl cobalamin so a lot of people just switching the form of b12 can make massive difference. So that those are two things. I would say check the version of your b12 and see if you can get a prescription and just actually get the needles do the shots yourself at home and maybe you can even do it once a week or so and that might help.
Alright with neuropathy there are some nutritional things that have been found to be helpful. Fish oil other types of essential fatty acids because they can protect the the nerve fibers can be super helpful for that. Off the top of my head that’s the only one that’s coming to mind. I know there’s three or four different things that you can do in terms of neuropathy. Once your nerves are damaged which is what neuropathy is, you can’t recover them but you can protect against future damage. Which is really the goal with things like the essential fatty acids so there’s that.
The tough thing is that most of the stuff that’s really going to be the most beneficial to you, is I’m not gonna be the pharmaceuticals. Which obviously you’ve already found because you’re so sensitive to those. You’re having side-effects the natural approaches are actually going to work better for you.
Of course those are the ones that aren’t covered under insurance is your finding so it is a little bit of a catch-22. Working with a coach in your case would be helpful because we could ask a lot more questions find out exactly all the different things that you tried. We could help you figure out which things maybe to try next.
There might be one or two key supplements that make a big difference, that we might be able to suggest you if we were able to have a conversation. You know obviously you told me a lot but I can’t ask you questions and get more information. But there’s a few things like d-ribose for some people is super super helpful. One of the studies that was done for those of you who are thinking about maybe trying this, in the study they used nine… of, sorry, used five grams of d-ribose three times a day for two weeks and then down to twice a day after after the two weeks.
The people who tried that had a massive increase in energy that’s the big thing it’s helpful for. So again you know I can’t have a conversation with you here, and find out is fatigue is your main symptom, is pain your main symptom, is sleep the issue?
The issue and if I had the answers to those things I might be able to make different recommendations but d-ribose is one of my my favorite things and, things like acupuncture are also super helpful especially if you’re having pain.
Because acupuncture actually changes how the brain processes pain so that can be helpful. Also, ironically even makes Opiods work better.
It actually lets your Opioid receptors in your brain work, and accept the medication better. So if you’re taking pain medication something like acupuncture can actually help reduce the amount of pain medication you have to take because it allows it work better.
And sometimes acupuncture is covered, Sometimes it’s not again we’d have to have a conversation and find out some of those things. But there’s a couple suggestions for you.
[Norman] Ok, so Blaine I hope that answers your questions. I do see that you posted here you are allergic to all fish so that may be part of the treatment but what we’re going to do is I’m going to put a link, when we’re done with this video I’m going to put a link to Tammy’s website, and also your email if you don’t mind, Tammy and that way you can contact or Blane can contact you directly to follow up.
[Tami] Absolutely and one comment about the oil. There are other oils that you can use besides fish oil. So again we could just have a have a conversation and talk through the things that you might be allergic to and if any of the other types of oils would work.
Ok. and of course as soon as I said that Blane popped up with question how can we talk. So make sure to get you that information here and I’ll send it to you directly well at the end of this interview.
Tami, International Bestselling author! Tell us about your first book!
[Tami]Sure! Yeah so my first book is really all of the things that I did to get better.
Well, most as much as I could fit in one book. So it’s got a chapter that is all about how to improve your sleep!
A chapter on how to reduce your pain, how to increase your energy, how to work with your doctor’s, there’s a chapter at the end that talks a little bit about working with a coach, and the benefits for the people who are interested in that. Because that was actually a big help for me. Through the book I just give you all the things that I learned along the way. So I talked about supplements that I tried and how they work for me. I talk about medications, I talk about the things that I’ve learned through working with my clients.
In the chapter on increasing your energy I talked a lot about how to live within your energy budget. So you know I think most of us are familiar with the spoon Theory and Christine Misanderando, so you know that we have a limited budget of energy and one of the biggest things that we can do to increase our energy and reduce our pain, is learn to live within that. So you know it’s just like cash I think of it like cash we are we get a certain allowance for the day and if you go over, if you borrow on credit, you pay more. So there’s a lot in there about that. So that’s really that’s really the first book is just the all the stuff I did to feel better and all the things that I teach my mind.
[Norman] Ok, that’s awesome. so real quick I just had another question come up. I know we have about 20 some-odd viewers that are watching right now on the Men With Fibromyalgia page.
We have , Julie Ryan, of course Blaine. But here is one from Marina and Mark Deorio.
And I want to thank you guys for sharing this! “There are lots of acupuncture quick clinics all over the country where you can play it has sliding fee scale and are treated by certified acupuncture”
So, definitely thank you for sharing that information. Blane you might want to look into that in Ohio area. also real quick we also have Melissa Talwar, who is the founder of the International Support Fibromyalgia Network watching us.
Melissa I can ask a favor, I because we are also broadcasting on the #SupportFibro page. I can’t monitor both so if any questions come up there, if you could text them to me and I’ll make sure to get them out on this broadcast as well.
So, this is a Q&A. If you have any questions please let us know!
Now we have talked about first book a little bit, Tami. You said you had a surprise giveaway for everyone who is watching live here. So International Best-Selling author, you got one book out there but you told me and just little bits and pieces you got a second book coming, and we got to talk about the cover. But tell us something to tell us about your secret giveaway here.
[Tami] Sure. So the new book is titled “The Fibromyalgia Coach”, and it is the becoming a coach was actually part of what helped me get better.
One of the things that I didn’t expect, was that by being a coach, it really keeps being super accountable right because I’m on the phone every day with clients telling them to do things, and I think to myself. “Hmm maybe I should do that myself, right?” You know that I become a real hypocrite which it just does not fly with me. So being a coach was was super helpful, in keeping accountable, and also gave me the ability to structure my life in a way that supported my illness.
I realized in the last year that there were really a few key questions that I asked myself in order to evaluate the kind of work that I wanted to do.
Those key questions are what the new book is all about.
There’s eight questions where you evaluate: What you need physically, emotionally, socially, mentally, and how you measure success.
Most of us you know one of the things about Fibro, is that quite often we we feel sort of a loss of identity. Maybe like we aren’t contributing to the world … Again.
So those are some of the things that I included in terms of measuring success. Am I making a difference in the world. So those eight questions are the main core of the new book.
There’s also some other things along the way again about my story, and and how I’ve been able to go from filing for disability, to basically not having any fibro symptoms these days.
So that’s what’s the new one is all about!
So the giveaway! There are two things that I would like to offer those of you who are listening…
The first one is I would love to give you all a free copy of my first book that one’s that one’s done it’s out there and well actually have a link that we can share with you to go and download the e-book. it is the e-book it’s not the paper back just because obviously the cost of that right? Mailing you a physical book but the e-book is available in a bunch of different formats you can get in a PDF for your kindle for android your phone, all kinds of different things so we’ll give you the link for that! Then for those of you who might be interested in reading the new book I do have a few spaces left on my book launch team which means that you get to read the new book early give me feedback. Then if you like it of course, I’d love for you to share when it comes out on February 9TH!
[Norman] Awesome! So now we were hoping to put the link up on the screen here but we have the software change at the last minute what we’re using unfortunately kept locking up so I can’t put that on the Screen. However, when we said this was just going to be for live viewers. What we’re gonna do is for four hours after this video, forever, so if when you do get the link make sure you download it right away, because it will the link will expire on the 15th.
Alright, so we actually have till the 15th to make sure we get this posted out, We will be deleting that off the actual page here.
Now let’s see, Kate Strows, actually I think you know her very well she was in your first graduating class for being a Fibromyalgia Coach.
She says “It has totally changed her life and she loves what she does. But also that you’re right Tami helping others totally helps keep you accountable for your own health.” Now want to touch on that real quick because I had chance to do a radio interview with Joey giggles here last week and it was sort of A surprise he had a couple cancellation’s. So is in at the last minute I had no prep time. One thing that I know for me starting Men With Fibromyalgia, and you know part of my story Tami, and I know a lot watching this do. But this started as my own personal pain journal.
Literally I was trying to do something for Social Security disability so they could watch you know where I was at.
I hate writing I’m gonna be honest. Even though I am a blogger now. I hate writing. So a lot of the blogs I do, I actually record it like this off my phone. Just an audio to text recording.
Then I’ll go in and edit it so it is more of a written word. I cheat a bit. But within 48 hours of launching my first: “This is my story I’m a man I’m going to fibromyalgia…”
I had guys coming out of the woodwork on Facebook asking, how can we help you share your story? How can you share our story? Literally 48 hours later, Men With Fibromyalgia was born. Now here we are three years later and you know doing videos like this!
I brought it up not to share my story. Because it’s not mine… It’s the one who’s watching this video, its everyone we reach out to help, and really that’s what gets me up in the morning.
Is knowing that I can go out and I can help someone else today!
You know, I can say you’re not alone. I am going through this with you, and I had the same symptoms, I have the same struggles.
It’s like I was watching Being Fibro Mom, this morning. She did a little bit of a live thing with her husband. Brandy Clevenger, and she was talking about, how things were going in the house, the kids, and i had to leave that because I called need an hour’s worth of rest…
I am in a flare this morning, and I have a big interview coming up today so I have to get myself geared up and prepped. You know? However, being able to share that with others, and connect with others who we know has the same symptoms to have the same problem exactly able to help others huge.
[Tami] It is that’s one of the things I love about being a Fibro coach! Specifically working with Fibro patients. When I first started I did several coaching sessions from bed.
If I had to cancel or if I had to change the time, a little bit or if I wasn’t a hundred percent, maybe as only eighty-five percent.
My client’s understood because they were dealing of with the exact same thing. Which gives you I think a lot more grace and flexibility than maybe working with, or for people who don’t have Fibromyalgia. Because most of the time they just don’t understand.
[Norman] Definitely now we have two questions here was actually for me from Being Fibro Mom, Brandi Clevenger.
Is that a Men With Fibromyalgia shirt? Yes yes, it is right now it is a one of a kind but we will be getting those out for sale here shortly. … Now the question and this one came in from Melissa let me just scroll back. “Tami, how many Fibromyalgia coaches are there so far?”. (dogs barking) And pardon the puppies there.
[Tami] We love our animals right! they’re part of our therapy right?
So currently 15 certified Fibromyalgia coaches and advisors who have gone through the through the training Program.
I have a new class that is graduating on January 21st. So if you follow my Facebook page, you’ll see some announcements starting towards the end of this week if you’re interested in attending graduation and listening to interviews with them. So that will be a great way to get to know at least the current graduating class.
So that will make, what is that math? … 21 coaches and advisors, in five different countries around the world.
We have coaches of course here in the US, there’s a new coach graduating this month in Canada. We have one in South Africa, one in Argentina, and one in the UK.
So, my goal is to get in as many countries as we can because… as as awesome as it is to you know just be able to talk to someone a lot of what we do revolves around questions with the healthcare system right? So understanding the healthcare system in your own Country.
Being able to talk to a coach that speaks your native language, like our gal in Argentina, is I think super helpful and way more helpful than even talking to me right? Even though I trained them they’ll be able to help you better because they understand your country. your healthcare system, your language, culture all of that. As far as how to found find them the best way to do that is to contact me through the International Fibromyalgia Coaching Institute. Norman will give you those links. I am working on creating a find a coach page so you’ll be able to actually just go to the website and search that but that’s still in process you know how it is.
We can only can do so many things it
[Norman] Isn’t that the truth, isn’t that the truth!
Brandi Clevenger of Being Fibro Mom had a specific question to ask you so I cheated. I sent her the link so Brandi, what was your question?
[Brandi] Hi Tami! Nice to see you again…
[Tami] I know I now we’ve talked but i don’t think we’ve ever actually like face-to-face that’s cool.
So one of the things that I was talking about this morning is when you and I talks last summer about me becoming a Fibromyalgia Coach, And I asked you you know what does that entail? I know that not everybody may be able to do look like a coach right then because I didn’t know what had went into it so you said something. But I said, Tami what can I do to set myself up for that later like, what can of path can I lean towards, to be able to become a Fibromyalgia Coach later on?
So could you just explain that for a moment?
[Tami] Yeah absolutely! So the Institute right now offers two different certifications we offer a certified Fibromyalgia Advisor certification and certified Fibromyalgia Coach.
The reason we offer the advisor certification is that what I’m really training on and what I’m certifying is the f-word the Fibro mouth part of it all.
I’m not I don’t want to get in the business of actually doing coach certification because there are so many programs out there that are so good and nobody’s doing Fibro.
So let’s focus on what nobody’s doing and and do the other. So if someone has a coach certification through another program, whether it’s the Martha Beck institute, or a life coach school, or it business certification of one of our gals has a Dr. John Maxwell coach certification…
Whatever it is, then I just tack on the Fibromyalgia word, and you will be a certified Fibromyalgia coach.
If you have no background at all which is actually most of the people coming in. Were patients right? Then you would receive the Certified Fibromyalgia Advisor title.
Now as far as what you can do between now and then, there’s a lot of thing’s so if you know you want to be a coach specifically then there are a lot of programs out there to help you work towards that, and there’s everything from inexpensive you know a few months programs all the way up to full graduate degrees in coaching.
So, whatever your interest or financial opportunities are there’s lots of choices there. There’s classes you can take probably even at your community college. Online classes lots of things like that.
In terms of being a Fibromyalgia Advisor the best thing you can do is just learn how to live really well with your illness.
I mean that’s what we do right? So everything that you can do to educate yourself, you know learn, follow the research learn what the treatment options are.
Just learn everything you can. Obviously that’s what the training program is for too, but if for whatever reason you can’t start that right now. You can absolutely start learning things on your own.
And I think that’s exactly what I told you, wasn’t it?
[Brandi] Yes, there was actually a little bit more, but I was writing it down so I wouldn’t forget. You were also telling me, that their might be people in my community right here that might have Fibro.
You know me reaching out to them and connecting. So, right after we got off the phone the next morning I did that and there’s three people that came to me.
Because with Fibro your kind of hesitant to make that connection with someone else. Because it can be depending on your experience if you want to connect with someone. But there was three people right off the bat that was like yeah I have it. So I mean that just making that connection and I know you were saying, participate in some meetups, or go to a support program, and start learning how to lead that.
[Tami] Yep! Start talking with your providers, learning everything you can from them. But also letting them know that if they’re if they have other patients who just want to connect with somebody who understands. That you would be willing to talk to them you can start building those relationships.
I’m so glad you brought that up because so often we feel like we have to wait until were better to help someone. Or wait until we know everything before we can help! The reality is a lot of my clients just want somebody who understands.
They just want somebody to talk to who really gets what they’re dealing with everyday.
All of us as patients can do that, wherever we’re at. So whether you’re started whether you want to like go all the way into starting a formal support group.
You know you can absolutely do that. As a patient but you can also just have conversations and encourage people.
You can do like Norman did, and start a blog just talking about your journey. That is actually amazingly helpful for people.
Just to share, Hey you know this happened to me and here’s what I tried and here’s how it worked. You know I tried hyperbaric oxygen for the first time a few months ago you know and talk about how that went.
There’s definitely ways that you can start helping people just where you’re at!
The important thing is just not to feel like you have to be perfect first. That was one of the things that I realized early on in my journey!
All of a sudden I had this thought of you know I wait until I’m better to make x y&z changes in my life that’s kind of like waiting until you’re in shape to start exercising which is really kind of stupid right?
So I think it’s doing these things that are going to actually help you get where you want to be.
So, don’t wait just start where you’re at Yes, I am glad you brought that up, and I think that is some great advice Brandi.
Brandi I know you had a couple other questions. However, I got a bunch on facebook so I’m gonna let you go. But I’ll make sure to ask those questions of Brandi, sorry of Tami, as the time allows.
[Brandi] Alright thank you. Bye Tami, bye Norman.
[Norman] Thanks for joining us Brandi!
Now, Tammy here’s a great question that came in, it’s one I should have thought to ask… but fibro fog you know….
This is from a new facebook page called “Pain Camp”
“What are some of the things that you are mindful of when you’re coaching men versus coaching women with fibromyalgia?”
[Tami] That is a fantastic question! So my number one goal for this year is to have a Male Fibro Coach.
Because I really do think there is a big differences between men and women and and what Fibromyalgia brings up for us.
So when I am working with women in some ways, I don’t even have to think right?
I am one! So I kinda got you know I know the struggles and as women are main challenges; You know this isn’t true for everybody but in general. Our main challenges are giving ourselves permission to take care of ourselves!
In a lot of households you know Mom’s the last person to go to bed at night, because you got to make sure it…
You know, this is my house right? Gotta make sure that, the cats are fed, the garbage has taken out, the dishes are put away, the dishwasher started…
You know all this whole checklist of things! My husband’s is asleep before I ever even go upstairs.
But that is a big issue that we deal with as women. We are the caretakers most of the time. So we we deal with a lot of guilt over, saying “No I need to take care of myself.”
I think for men, you know there’s some of that too. That’s part of the human condition I think.
But for Men, and you know you can let me know if I’m on or off base here; But one of the things that I’m really aware of, is the fact that most guys you know you’re the providers of the family traditionally. So, depending on how your Fibro is going, maybe you are no longer able to be quite that same role.
You know I had a client for a while where he was the stay-at-home dad, and and she was the provider financially. That was a real identity shift for him!
There’s also a lot with Men, that goes into the the ideas of you know being strong, and and you know being the strength of the family.
We always think, of the strong shoulder to cry on, and that kind of thing.
You know maybe you you can’t put your kids on your shoulders anymore.
You know there’s there’s a perception that Fibromyalgia is a woman’s disease, and you’ll notice,that my books have flowers all over the cover, right?
Now there’s a specific reason that I use the cherry blossom, which you know has a lot of deep meaning for me. So that’s why that’s on there, it’s not just you know because it’s a girly book. But there is that. So you have to fight that too.
That what you’re dealing with, you know is really the issue. That Fibromyalgia really the issue. That it’s not just a “Woman’s Illness”, or that you’re weak, or that you’re you know whatever fill in the blank.
So those are some of the things I’m aware of. I also try to be aware of the fact that Men and Women generally think differently.
Guys are more focused on the bottom line, get me the results. Where Women tend to be more focused on the relationship. So when I’m coaching my female clients, there’s a lot of more social talk, And there’s a lot of encouragement, and there’s just you know the touchy-feely stuff, right?
Now when I work with with male clients, there’s a lot less of that, and it’s just a lot more focused on: What did you do? What results did you get? How can we change it to get the results you want?
So those are a few things!
[Norman] Okay, and this actually leads right into a question that just came in from Bonita Ray, and if I pronounced your name wrong I do apologize.
Bonita wants to know: “I want to be supportive of a male friend, what is the best way?”
I just want to touch on this one real quick!
Any friend, whether it’s with Fibromyalgia, or any sort of Chronic Illness, Chronic Fatigue.
Any sort of friendship, any sort of relationship; Be open, be honest, and be supportive! Let them know, your actually there. That you are not judging them when they say they are in pain, and they can’t do something.
Believe them and say, “Okay what do we do that wouldn’t cause more pain for you?” “I value spending time with you, I want to spend time with you. So what, how can I do this on your terms?”
Basically. That’s coming from a Male perspective. Tami what are your thoughts on that?
[Tami] Well I think what you said is exactly right!
The biggest thing that we can do is just believe people.
You know, if they say that they’re having pain believe them. If they say that there they can’t come to something because they’re not feeling well, Believe them!
Don’t take it personally. Which reminds me of the book The Four Agreements, if you’re familiar with that. That’s actually one of the four agreements is ‘don’t take anything personally’.
It’s it’s not about you, it’s it’s about them. So don’t assume that there’s more to the story than they’re telling you.
But at the same time, understand that there are probably things that that they don’t really feel comfortable maybe admitting until they trust you.
So there’s sort of this like, any relationship right, that there’s a building up of trust. We tell you a little bit of information see how you respond to that.
If you handle that well, then we’ll tell you more information.
So, depending on your relationship with this person. If you ask them how are you doing today, and they say, “fine”. It might be because you know, they don’t know how you’ll handle it.
If they tell you they’re really doing! So the more supportive you can be, the more they’ll trust you with what’s really going on.
Another thing you can do is; Quite often you know, we tend to hate that question right. How are you doing? Even if somebody really wants to know the answer, sometimes we’re just tired of saying it, right?
So there are things that you can do to sort of develop a code. The “Spoon Theory” is one that a lot of us use. Do you have enough spoons for that? OR Telling somebody that I’d love to come, but I am out of spoons for today.
I had a client who actually used a vase of rocks. So she had a bowl full of rocks and the level of those rocks told her husband how she was feeling for the day. So when she was feeling really good the bowl was full. When she felt really bad, she’s said it gave her a lot of pleasure to just dump all those rocks across the table!
Then he would know when he walked in, The bowl was empty, there’s rocks everywhere is not a good day… She didn’t even have to say anything. So that’s something that you can also develop with your friend.
I don’t know, you can speak to this more than me, but I think in some ways that’s even more important with men. Because you’re you don’t want to talk about how you feel, as much I think as women do.
I mean sometimes we enjoy that. That’s part of our our conversation as women. I think for for men it is less that way? So if there’s way that you can pick up on, what’s going on without having to ask them, without them having to say, then that is even better!
[Norman] Okay. I definitely agree with that. Men don’t always like talking about the emotions, you don’t like talking about pain.
Because we’ve been trained, society wise, historically wise, you don’t show weakness!
Where literally if you’re the weak in a pack of Antelope, or a pack of Moose or Deer, the Wolves are going to get that one.
So you don’t want to show that weakness. Just using the animal example, just taking away the society, that’s so ingrained in I think both Men and Women.
Perhaps more so in Men being the provider’s. So understanding that, and just being able to approach it in…
I’m here to support you. I’m here to help you. Being there to talk, being there to listen. But for Men, if they don’t want to talk, don’t push it! Because a lot of Men, if you push them to reveal emotions or push them to reveal that weakness…
Yes that’s a huge sign of trust when we do. BUT, …… That is a hard barrier to brake.
So be gentile, be slow, and move forward from there.
Tammy I got a few more questions on the Men With Fibromyalgia page but let me ask, did any questions come up on your page that you want to answer?
[Tami] Let me go take a quick peek. Go ahead and I will see if I can multitask.
[Norman] Okay well there’s actually a couple here: Sabrina Newman, (Hi Sabrina) She said:
“Men need to hear it is okay to see a Doctor, and it is okay to admit that they hurt.”
Men that is very, very true! One thing to touch on with that, and Sabrina thank you for bringing this up!
A lot of women that I talked to, with Fibromyalgia, say that they have a Mild to Moderate Fibromyalgia. Like my Wife, she has has Fibromyalgia. She is still working, she is still able to do a nine to five job.
Now granted in the evenings we rest, and on the weekends we try to do a little bit, but she can still go out and work. I can’t do that!
You know that I’m sitting here on my couch, you don’t see it but I got my MenWithFibromyalgia.com t-shirt on. But underneath that I got sweatpants. Because this is what you see right?
You know with that said, a lot of Men say, Were not going to go see the Doctor, we can’t admit that we are weak.
So this goes back to what I said just a few minutes ago.
Because if that I am going to say that say at least 80% of the Men I have talked to, have Moderate to Severe Fibromyalgia.
Right out the gate, because we have pushed too long, and I’m saying we because I did this:
We pushed along, we push too far. So by the time we actually said, “I can’t do this anymore, I need help”
We had pushed ourselves well beyond the point where it was going to be easier towards recovery, and we are looking at years to get back to some semblance of normalcy.
I’m really glad she brought that up. There was another one here, this is from Karen Brinklaw:
“Tami has given me hope and a purpose! And even though I have to manage my symptoms daily.”
So just a little shout out there for you Tami!
[Tami]Karen is going to be our our first Certified Fibromyalgia Advisor in Canada! She is the one I was talking about. So YAY Karen!
[Norman] Awesome that its outstanding!
Of course we do have Kirsten on she runs the Facebook group “Fibro Fighters under 40” And I say I will be turning 40 here in less than a month. So you need to change the name of the group here Kristen! I am feeling a little left out, I’m going to have to leave…
But we talked about that before. It’s really more of the mindset. But she’s also part of the team over at the International Support Fibromyalgia Network. So it is a really good group. We are open to talking about symptoms, different treatments. So definitely check out the “Fibro Fighters Under 40” group on Facebook. There is a great group there.
So, did you come up with any questions then Tami?
[Tami] I I don’t see any. I think the way that I shared it, they should be watching it on your feed. So I think all the questions are going to come that way.
Either that or I just don’t know how to use it. So it could be that too.
[Norman] Technology is a wonderful thing! So, lets see. I’m just going down here, we have a lot of questions, and some of these are really detailed.
So if I do skip them, what I will do is send them over to you at the end, Tami. Then if you want to comment here to help answer, that would be great!
[Tami] Yeah, I will just say something for that, while you look thru those real quick.
If you do have specific questions, about how do I treat this, or what I can do to get better? Honestly the best thing for us to do is have a conversation, and it might not be with me.
It might be with one of my other coaches, or advisors. But it’s just so hard to give advice based off of just something that is read.
Because there’s no dialogue. I can’t ask questions, I can’t say did you try this, or did you try that? What about this?
How did you react to that? It’s just really difficult to do so, if there are questions like those, that would be better answered in a conversation.
Obviously if there’s general questions, I’ll do my best. But it’s just, well it’s hard to do.
It’s like it’s like emailing your Doctor and asking a question. They’re going to tell you to come in and have a conversation.
Because it’s just it’s hard to do that.
[Norman] Exactly! So with that let’s see Sabrina had a great question here. Sabrina, before I go to your question:
Bonita, I want to follow up a little bit. You said “Thank you! I do believe them when they say they’re in pain, I’m so concerned, and have researched so much on this subject.”
With that said one of the questions Brandi Clevenger, Being Fibro Mom was going to ask. We actually talked a little bit about this, this morning. I know it’s a program we want to put together for the International Support Fibromyalgia Network.
But, Tami. What advise would you give to a spouse, or someone in a relationship, with a person with Fibro?
[Tami] Oh yeah. That’s think that’s a great question.
A lot of the things we said earlier, of course still apply. You know, believe them, ask questions. One of the biggest things that I think you can do, is be specific about asking us what kind of help we need.
So instead of saying, what can I do to help? Especially if we’re in a Fibro flare. You know, we can’t think we have no ideas what you can do to help!
We just don’t! So there’s some things we can do on our end as patients. We can think about that ahead of time, so the next time I’m in a flare, what would help me?
Then you now have that in a format, that you can read. That’s actually one of the things that we talked about in the training program. Is how to create, sort of a flare survival kit.
What is it that friends and family can do to help you. This actually came out of a conversation I had with one of my clients.
She was going to go have her Tonsils out, and she knew that she was going to be in pain, She wasn’t going to be able to talk because of that pain from the surgery.
Also it might cause Fibro flare, so what could she do with her Fiance, to help him, help her better?
So they had conversations ahead of time, and she kind of showed him her medications. She said okay, if I am feeling pain, then this is what I need. If I’m tired, this is what I need.
If it’s Fibro pain, I need this. If it’s pain from my surgery I need this.
Just having those conversations ahead of time so that you know what to do when you’re in that situation.
When we can’t communicate I think is super helpful and that applies to do so many different things.
Whether it’s you know, if you if you have diabetes or low blood sugar. Or you know whatever. There’s so many different things that go along with Fibromyalgia.
So having those conversations when you’re not in a place where you need help about what to do when you do need help, that is that’s huge!
Another thing that you can do is, again came out of a conversation with a client.
Sitting down together and looking at the upcoming week, an this particular client was still working full-time.
So she and her boyfriend talked about what he could do to help her get through the week.
So okay you’ve got these meetings, this day. You know I can help you by packing your bags the night before?
Or: How can I help with dinner? Again thinking about it ahead of time instead of waiting until you’re at that moment, when you are in a flare and you’re full of pain.
You have Fibro fog, and you just don’t know what you can do to help. You know I can barely know my own name right now.
So having those conversations when you’re actually having a good day will help, so much more on the bad days
[Norman] For sure, and I love this question that came in this is actually another one from Sabrina. Let me real quick say GUYS where are your questions?
We are here at Men With Fibromyalgia, Men I see a lot of you on here, but I am not seeing any questions! Come on GUYS help us out!
Now Sabrina has a great question because she has group of her own but she has a lot of men coming to her support group.
“What’s the best thing we can discuss for them as a general rule?” Also “What kind of coaching advice have found, helpful specifically format?”
[Tami] That’s a good question. So I think first of all in some ways we need to not think of men as different.
I mean Fibromyalgia is Fibromyalgia, Right?
So if you have topics about ways to feel better. If your talking about treatments, if you’re talking about energy management.
Fibro is Fibro, and that is helpful for everybody! So I think that’s big. I also think making sure that they understand, it is a safe place, it is big.
This actually might be why we don’t have questions, I just thought of this.
Maybe, guys if you have a question and you don’t want your name read. Just say let me be anonymous. That’s totally cool.
So having that. I think also sometimes as women and especially with support groups, a lot of what we talked about is our feelings and how we’re doing and occasionally maybe having a meeting where the emphasis is much less on that, might be more comfortable for Men.
Another thing that that we did in our support group, that I really enjoyed is, we occasionally had panels of people.
So one of the panels we had was actually a caregiver panel. We had three caregivers, we’ve had daughters husbands, boyfriends, you know sisters mothers come.
They talk about what it’s like being the caregiver with somebody with fibromyalgia. Just offering those different perspectives.
Remembering that in general Guys tend to be a lot more about the bottom line and the results. Not always, but often focused about the the data and statistics.
I mean, I know my husband is like that. He wants to he wants all the backup support information for why this is a good idea.
So including some of those things for the guys in your group, can be I think helpful. If you have any additional suggestions for her?
[Norman] Well, I think you really hit on the big point yes there are some different, well what I call clean pain and dirty pain in Fibromyalgia.
To quickly clarify. Clean pain, just hit myself in the arm. … And that was a really stupid idea! Especially in a flare, come on… (Tami Laughs)
But, that just proved my point the clean pain was the hit. The emotional, “why the hell did I just do that?” That’s the dirty pain, the emotional pain, that really doesn’t get addressed a lot in Fibromyalgia.
People are focused on, I’m Hurt, or I’m Tired. But it is the emotional pain, the emotional suffering that I called dirty pain,
that brings the biggest difference between men and women.
Really understanding that again like we said with, I think it was Bonita who asked questions about how to support Men.
Understand we don’t always want to talk about our feelings or it takes a lot of trust before we open up.
That’s why I know in MenWithFibromyalgia our Private Group, is for MEN ONLY. I have a lot of Ladies who ask “Please let us in the group”
No, this is just for Men, there are lots of women’s only groups ,there are lots of mixed groups.
This group is just for Men so we can talk to each other, open up about those feelings a little more, but not with that fear of being judged.
So, just have that understanding that it may take a while to get to know some of the Men in the group. Or to have them open up. But just be willing to support, be encouraging, that is the hugest thing for anyone who is an advocate.
Whether you’re running a facebook page, whether you’re running a Coaching Institute, whether you’re running a non-profit.
We, are advocates were going to have the same disease you are, we’re suffering like you are. But we are here to help you, and if you’re running any sort of page just keep in mind your your focus is on other people.
There’s one book I’m reading right now “If You Feel Too Much” it’s one Melissa Talwar actually sent me. It’s from the group “To write love on her arms” and it’s all about living life for the experience this most importantly helping others.
In reading that book, that really changed my perspective coming up on 2017! I really want to focus this year on helping others.
[Overtalk]That’s awesome! .. well one thing…I’ll.. go ahead Tami.
[Tami]I was just going to say one thing I would add, that I thought while you were talking. In a lot of our support groups. We really encourage talking about our feelings.
So I think in a lot a lot of support groups we focus on talking about our feelings and how we’re dealing with our illness. But if you can make sure that it is okay for the guys not to talk, and not to assume that they’re not participating if they’re not talking.
Because they’re still processing they’re still absorbing
talk about like, what Norman was just saying about, the dirty pain the emotional aspect of it. Have somebody present information, where the men in your group can listen, and absorb, and learn. To implement it in their own ways, without having to share their own feelings in order to be part of the conversation.
So that could be helpful. But most importantly making sure that they feel comfortable not talking, if they don’t want to talk.
[Norman] For sure! This one is from Mark Dioreo, “I don’t know when I am in a flare anymore. I’ve had Fibromyalgia for 20 years, and I used to have flares. But now everyday is the same pain and fatigue. My pain level is just an 8 to 10 depending on the day. Is this normal?”
No. Wow! Yeah no it’s not. Mark 8 to 10 is a flare day for me. Which is where I’m at right now. my average is a 5 to 7 pain level on an average day.
On a good day I’m down to about a three. Honestly I’m never out of pain, but the fact that you’re having an 8 to 10 level of pain, As fairly normal, I would suggest definitely talking with your doctor finding a new treatment.
Finding something that works for you. I would suggest some meditation or taking some time out from mindfulness, trying to get the mind to calm down. Because I know a lot of people say Fibromyalgia is in the mind, it is all in your head.
Well I in some ways yes it is, because our pain receptors are in our head. It’s like that alarm bell. Someone pulled the fire alarm. After the fire goes out the alarm turns off.
That’s a normal person. With Fibromyalgia, someone pulled the fire alarm, and it sounds in your case Mark, that fire alarms going off for 20 years.
Doing some meditation can definitely help calm that alarm. It’s never going to stop going off, until we figure out what causes Fibromyalgia.
But an 8 to 10 pain level every day? That is NOT normal. So get with your medical team, with your pain clinic, work on a new treatment.
Because obviously the one your on is not working. That would be my thoughts, Tami?
[Tami] My thoughts are exactly the same, and it’s interesting one of the conference’s I was at, a pain management Doctor said, that: “In the pain management world if your pain is that of a 4… A FOUR or higher, then your pain is not adequately managed”
So think about that a lot of us live above a 4, and we think that is okay. You really need to talk with your Doctor, and find some better options.
If your doctor is at their limit of knowing what to do with you, which often is the case. Right? We might start off with our primary care, and then you know, there’s not much else they can do to help me.
So it’s time to find a new one. That’s not saying your Doctor is bad, it’s just maybe you need a new perspective, or someone who has different training, or come at the problem from a different direction.
That’s one of the things that I hope that we can do as coaches, is help people find new providers when necessary. Which is why I want as many coaches in as many places as possible. Because then we could, you know connect then with a good provider.
So, wherever you’re located if you’re not sure where to go next, you can reach out to either one of us. You know Norman, I’m sure you have connections as well, and we will do what we can to help you!
But yeah absolutely, if you’re at that level then you’ve got to do something. Because at a certain point our bodies get so good at processing pain, that it actually makes our pain worse. Central Sensitization right?
Our pain gets amplified because we’re just so good at feeling pain and you have to bring that level down.
A lot of it is through things like Mindfulness. It’s that dirty pain that your talking about. If you can take that emotional part out, your pain levels actually can be lessened.
Because of that also, you know with Fibromyalgia we are stuck in that “Fight or Flight”. So that is actually part of the problem.
So, the more we can do to calm the nervous system, it actually improves Fibromyalgia symptoms. So it’s not just telling you it’s all in your head, and that you need to chill out, right? I mean this is actually a real treatment here.
[Norman] I agree because there is real pain with it. Both the clean pain and the dirty pain, that I talked about.
But being with the “Fight or Flight” or that pain center right up here. You know, we can say that Fibromyalgia is all in our heads.
That’s where the pain is being processed. But that doesn’t mean the body doesn’t hurt! That doesn’t mean that we’re not exhausted.
It doesn’t mean we’re not having problems thinking because those are real symptoms of Fibromyalgia. So yes everything sort of stems from brain. But the body runs off the brain. The body takes care of the brain.
[Tami] Exactly, (over talking) If you take your Brain out, there is nothing left!
[Norman] Exactly. So Tami, I know we originally scheduled an hour for this, but we got a few more questions. Do you mind if we keep going?
[Tami] I’m, let me just check my calendar here real quick. I know I have a couple of calls later today. Yep I’m good. My next call isn’t until 11 so we can go a few more minutes if you want.
[Norman] Okay. This one is a question from Todd.
“Why does my doctor always act like I’m crazy up when I talk about my pain? And what is Fibromyalgia?”
[Tami] Oh. The golden question.
[Norman] Yes I read that one and… Well I am going to let Tami answer the Doctor side of this.
But let me tell you what I understand Fibromyalgia is. And Tammy if I go off base here are please correct me. Fibromyalgia is a medical diagnosis of elimination. I say that because we want to make sure it’s not Lyme disease.
We want to make sure it’s not Lupus, want to make sure it’s not black mold. There’s a lot of different conditions out there very similar to Fibromyalgia.
But have very specific markers, either in the blood or that they can pick up on MRI. So they can treat those conditions. Fibromyalgia being a diagnosis of exclusion, basically says. Well we know these are real symptoms.
This is a real illness, this is a real problem. We don’t know what causes it. No medical professional can turn around and say, “This is what causes Fibromyalgia” So, because we don’t know what causes it, we don’t have a cure. We don’t have an actual solid treatment for Fibro.
But, what Fibromyalgia is in a nutshell, and this is not a medical version, I’m not a doctor Tami’s not a doctor. We’re just sharing our own experience.
I want to emphasize that!
But Fibromyalgia is chronic body pain, chronic fatigue. Being exhausted or run down all the time, and having brain fog where you can’t process words, or you can’t really carry on conversations. You are in the middle of the thought and it just it is gone.
That’s what Fibromyalgia is, it sucks.
So, on the Doctor’s side Tami. Why does their Doctor always act like their crazy when Todd talks about his pain?
What’s your thoughts on that?
[Tami]Do you want my honest thoughts/ Or my politically correct thoughts?
[Norman] We don’t know the doctor he’s not gonna sue us… Exactly no names being mentioned. So lets have the honest thoughts!
[Tami] You don’t have a good doctor! That’s my honest first thought. If your doctor thinks that you’re crazy, when you’re talking about your pain, then your doctor is a … fill in whatever word you would like. “Not a good guy”
Because at the very least I think our doctors need to believe us. I mean if you’re going to your doctor and you know I think I broke my toe yesterday.
Going to my doctor and I say, “You know I think I broke my toe”, and he says “You’re crazy”.
How does that help me? Or if you go in and you say, “You know I’ve got this cough I’m wondering you know if maybe I have bronchitis or pneumonia or whatever it is”.
“No you’re crazy.” Pain is the same!
I mean granted, with pain there’s no visible signs necessarily. Although let me tell you my toe is pretty beautiful!
But that you know and there’s no, if your not coughing, potentially with bronchitis or pneumonia, there’s there’s some visible outward signs.
But your doctor’s gotta believe you! If you have a doctor who doesn’t believe you and respect you just on a basic human level. Then why are you going to that doctor? I mean just bottom-line now. You may think that I think a lot of times patients we get into this situation where we feel like we don’t have a choice.
But I think that that’s how we as patients can change the medical system. By voting with our dollars. By voting with our appointments that we make.
In my first book, I use the example of a restaurant. If you go to a restaurant, you make a reservation for 7pm. You show up by 6:45pm. You don’t actually to your table until 7:30 or 7:45. 45 Minutes late.
You sit there at the table, and you wonder, do I even have a server? Nobody brings you water, nobody comes to take your order.
You hang out. Finally you get your meal the meals cold. When you eventually get your check after waiting forever.
It has things on it you didn’t expect, and it’s a lot more than you thought it would be.
That’s the same experience we have it so many doctors offices right? You have an appointment but you don’t get taken back to your exam room until 45 minutes after your appointment time.
You sit there sometimes, you know not fully clothed, as you’re waiting for the doctor to come in. You feel like you’re being held hostage!
You know, it’s Wham, Bam, Thank you Ma’am, here’s your prescription, and out the door you go!
When you get the bill and you’re like what the heck? …
Now that was a restaurant? We probably would be sitting there, while we’re waiting for our check, posting a negative review on Yelp. Right?
We’d be telling all our friends, “Don’t go here it’s terrible! The service sucks”
But at the doctors office, when we go to leave and they say, “I want to see you again in two months”, we say okay.
We make the appointment. I think we need to treat doctors a little bit more like restaurants. We need to go to the the doctors who are good. Not go to the doctors who are bad.
Eventually that is going to change the medical system! Because it will have to change for them to survive right? Bad doctors will go out of business if they have no patient’s.
So there’s my soapbox moment for today.
[Norman] I just want to sum up real quick what you said. But this in my own words. We need to quit treating our medical teams, our medical professionals, our doctors, Like GOD’S. Their Not!
They’re human, they’re fallible like us. And really as patients we need to become our own best advocates.
We need to learn about different treatments, we need to study up about our illness, we need to be able to learn how to communicate with our medical professionals.
Say, “You know what? I think you’re mistaken. This is the research, and the study I have done. “I really would like to have these test’s, or I would like to try this treatment.” Here is the reason why.
Because medical professionals can’t keep up on everything! Especially if it’s a General Practitioner. Like a pain clinic you expect them to know more about pain. To know more about Fibromyalgia. But a General Practitioner, how can they study ever aspect of medicine and keep up on it? They can’t…
So we have to be able to communicate with our professionals but quit putting our doctors and our teams up on those pedestals.
Going; “Okay, whatever you say” . No! We gotta say; “We don’t think so here bud, we need to talk.”
[Tami] Right! And we’re the ones paying the bill. They work for us. You know anywhere else, like if you hired a contractor for your house, or you hired someone to design a website.
You’re paying them, you’re the client. Their the service provider, and you would be the one driving the ship.
You’re the one who hired him, you’re the one that can fire them. It is the same thing with your doctors. Yes in some ways they know more.
But in other ways they don’t. I mean they don’t live in your body. They don’t know what you experience on a day-to-day basis.
I think as Fibro patients, a lot of times, if you’re really tuned in. We know the difference between; “This is Fibro Pain” or “You know I think I did something to my back, and this is not Fibro pain.
So really knowing ourselves, and standing up for ourselves. and really communicating. That will get you better medical treatment.
But sometimes the answer really is to fire your doctor and find a new one.
[Norman] Definitely! Especially when you have, just to wrap up on this one topic. What I call an old-school doctor. You know I do like a lot of the younger doctors although they seem like they’re inexperienced.
Their, you know fresh wet-behind-the-ears right out of medical school. But one thing that I didn’t know until last year is that they didn’t start teaching about chronic pain,or chronic pain management in medical school, except as a sub-specialty, not just a specially but a sub-specialty until five years ago!
[Tami] Wow! I didn’t know that!
[Norman] Yeah, I was blown away when I found that out. And if their not teaching about chronic pain or teaching about chronic pain management. How, you know as a general medical practitioner. How can we expect the right treatment? So that’s why I really look for some of the newer doctors.
With that said, because I know you do have a couple calls coming up I’m gonna make this the last question for the day guys.
Okay: This is Lori Quillen, she’s actually typing for her husband Steve. Steve would like to know “Why is he getting worse? Is Fibromyalgia a progressive disease? After having Fibro for 9 years, and just doing the same thing he’s getting worse. With more pain, more fatigued”
A lot of other people here have asked very similar questions so that’s why I want to wrap up on it a great question.
Steve, if you go by what the medical industry says. No fibromyalgia is not a progressive disease that’s from many different medical websites. I’ve done a lot of study on it. Now for me talking to Men with Fibromyalgia, Women with Fibromyalgia.
Different Fibromyalgia groups. Is Fibromyalgia progressive? Definitely. It can go from bad to worse. But I in my case where 3 to 4 years ago I was sitting on this couch in so much pain, and so much tears, I couldn’t do anything.
I lost my job, I couldn’t figure out anything. To finding the right treatment for me, where most days I’m able to function.
I do know that after this video I’m going to be honest guys I’m gonna be taking couple hour nap. Definitely taking some meds. But that’s what I have to do, it’s a choice I make.
But it’s about learning to make choices. Learning about what limitations are. Does the disease get worse?
Yes it does. I have new symptoms now that I didn’t have last year. I have new problems this year that I didn’t have last year.
That are Fibro related, but it is manageable. Just finding the right treatments for it. But Tammy would you say Fibro is progressive?
[Tami] I love this question that comes up quite often. And like you said… I actually had this conversation with Dr. Ginevra Lipton.
She is is the the Freedom Center for Fibromyalgia. She’s written a couple of books.
Her most recent book, “The Fibro Manual” it’s fantastic.
[Norman] That is an awesome book! I have a copy of it right here next to me.
And we’re going through like 1 to 2 chapters a month. So in a nice slow pace, but definitely check it out I can’t remember the name of the group, but I’m part of it myself. But it is a great book!
Along with “Take Back Your Life” by Tami Stacklehouse. Make sure to read “the Fibro Manual” that is on our top 5 reading list this year.
Yes for sure absolutely … Anyway you were saying? I sidetracked here.
[Tami] No, it’s totally fine. I actually have her book sitting right here because it’s it’s like it’s a reference book. I look at all the time!
I hosted a book launch for her when that book came out and this I think this question was part of that, or maybe it’s a different conversation i had with her.
But that was one of the questions that came up. She and I both have the same perspective. Which is that technically speaking from a medical perspective Fibromyalgia is not progressive.
What I mean by that, is something like MS. Several you know there’s a bunch of different forms of MS. But some of them are progressive, meaning that no matter what you do it’s going to get worse and that’s just how it is.
I don’t think that’s the case for Fibromyalgia. I think there are things that you can do to not have it be worse. I think you can get better.
However if it’s not appropriately treated, and if the other things in your life are not appropriately treated, that usually you’ll have worse symptoms.
So for example: One of the things that happens to all of us as we age and there are certain things that happen when you get older.
You know you things like Arthritis, other types of aches and pain. When you have Fibro, those are amplified, because that’s what Fibromyalgia does!
It and amplifies pain, and so as you get older you very likely could have more Fibro pain.
But that’s not necessarily because Fibromyalgia itself is worse. But just because of the compounding aspects of aging.
Other conditions same thing. You know if you have diabetes and your blood sugar isn’t well managed that will affect Fibromyalgia.
So the thing with Fibro, is that you have to treat everything else too. And all of those things go together and so if you have something out of balance, then the whole thing is out of balance.
So, I don’t think Fibromyalgia is necessarily progressive. But I do think you have to manage it well, or it will be. Because of that central sensitization issue .
The more pain we feel, the more pain we have. It’s just like this, a positive loop cycle where it just gets worse and worse.
[Norman] Exactly. And I just read Jamie Heidel’s new book “Life Beyond Chronic Pain”. It’s an e-book I have it right here on my desktop.
But she has the facebook page “I Told You I Was Sick” and one of the things she talked about was, there’s really four stages of healing.
And it goes back to what Hypocrites said, it all starts with the gut. You know and the intestinal system, what we eat, stay away from processed foods.
For some people staying away from gluten, or doing a Paleo style diet works really well. For some it doesn’t. My Wife is it doesn’t my life is a very low carb, she loves a protein diet. She does really well on it.
Well if you took the carbs away from me, I will not function I I need my carbs. You know I don’t need to do a whole pasta load like I used to.
It used to be pasta’s and bread’s every single meal. Now it’s like once every couple of days. But we’re all different, everyone has to find what works for them.
So, with that. Tami I know we have gone over. But again tell us about “Taking Back Your Life” Tells us About your new book coming out.
Guy’s I did put that link, down here in the comments. I am going to re-post this video to YouTube, so I will add that link there as well.
So for the FREE GIVEAWAY, the books. That link is already here, but I’ll make sure to share it. If you have any questions, feel free to message it to us, or leave it in the comments below.
We are just wrapping up here so Tammy again tell us about “Taking Back Your Life” and your newest book, “Fibromyalgia Coach”
[Tami]You Bet! So two books. “Taking Back Your Life” Find hope and freedom from fibromyalgia symptoms and pain.
That one is just is all the things that I learned along the way that helped me get better. it tells a lot of my story it tells a lot of my clients story and its, really the practical day-to-day advice for the stuff that you can do in your own life to feel better.
That’s the first book, and that’s the book that we’re giving away for free! The second book “The Fibromyalgia Coach”,
Comes out February 9th. It is all about, finding a career that will help you heal. Finding something that gives meaning to your life. That supports your body, and supports you mentally, socially, emotionally, and actually helps you feel better, instead of feeling worse. There’s eight key questions in there that that will walk you through how to make that evaluation in your life.
That’s the new book if you’re interested in reading that early you’ll have to contact me directly and I can add you to my book launch team.
So ,the bottom line is. I just want you guys to know that, I really believe that wherever you’re at. You can feel better!
It sometimes takes a lot of trial and error. It’s not necessarily easy, there’s a lot of work you have to do on your part.
But, it’s possible! So if I can give you just one message, that’s it.
You Can Feel Better!
[Norman] Let me add to that, not only can you feel better but men, women, teens, anyone who has Fibromyalgia, or any chronic illness …them me even emphasize that.
YANA – You Are Not Alone! I say that because it is mental health awareness month, but big part of that is suicide awareness for suicide prevention.
So the biggest killer, of and Chronic Illness, is people who allow the depression to get to them. Leading to suicide. That Dirty Pain.
You Are Not Alone! We are here to help. If you don’t want to have a comment on a page whether it be, my page, fibro page, Brandi’s page.
Anything like that. Feel free to message one of us directly! Or message the page directly. We will not share your comments. We are here to help.
So reach out! YANA – You Are Not Alone! That is so huge.
Well Ladies and Gentlemen, we’re here with international best-selling author Tammy Stackhouse. Founder of the International Fibromyalgia Coaching Network.
There we go. Tami, thank you for coming on today. I know we have a lot more questions. I’m going to try and go through those here on the Men With Fibromyalgia page, answer them as best I can.
Tami, if there is any you wish to jump in on, we will be glad to have you.
But again, Thank You for coming on and I look forward to being part of your book launch team, and with permission might steal a few gems from it to share them out with people, as your building to the launch.
[Tami] Absolutely, that would be awesome. That would be great, that would be awesome!
[Norman] So we will have a few gems coming from the newest book “The Fibromyalgia Coach” by Tami Stacklehouse
I will also put a link to her Coaching site along with here facebook page here in the comments below. Once we finish up with this video.
So, Tammy again thank you very much for your time this afternoon where for coming out!
[Tami] Yep! Thanks so much for having me!
[Norman] All Right. Men With Fibromyalgia, you have a great day. Again YANA – You Are Not Alone!