Ladies, I love the spoons and marbles ideas. However, since my youngest living child is 53, I can just hear one of them enjoying being able to announce, "Mom lost ALL her marbles today!"
I enjoy the show very much. Having been diagnosed in the nineties, after being sharply dismissed by a few physicians who said "fibromyalgia isn't even a thing." I finally found a diagnosis, and a physician who overmedicated me for eight years. I was a hospice social worker and had Stage IV cancer patients on less morphine than I was taking. Constantly fought sleep behind the wheel of my car every day. So finally went off cold turkey when the doctor refused to help me wean off. Then I went to a detox center when I got out of the hospital, where they took me when they found me unconscious during the cold turkey attempt. After the detox, (suboxone treatment--which I never took again after I left there), I went to 12 step meetings for several years with Celebrate Recovery, became part of the leadership team, then left it to take the GriefShare ministry at our church. I just retired from that last year, after fifteen years of service. I said all that to say that only my late husband ever took the time to understand fibromyalgia.
@@evelynseaton1754 I had the same experience being diagnosed in the late 90’s after a serious car accident. I had one neurologist actually tell me that my only issue was that I was severely obese and needed a home exercise program, keep in mind I was 5’2’ tall and only weighed 146 at the time. I was a bit overweight yes, but far from severely obese. The neurologist weighed every bit of 375-400 lbs himself. About 6minths after that he had a massive heart attack and nearly died. It really hurts you to your core when no one believes you and the amount of pain you’re in. So glad to hear that your husband supports you.
I am forever overdoing things, I never seem to learn! I am then cross with myself, and spend the three day recovery time beating myself up!🤦♀️🙄 Thank you both for your invaluable time and support once again, see you next Friday. 😊😘😘
I appreciate the lonely talk. I love Christmas and usually am one of those obnoxious people that decorate the whole inside and outside of house. I am alone but usually kinda love the alone lifestyle. I have had such a sick year - i didn't even put up a tree. I don't have the spoons to "do it all" anymore - or at least this year and the guilt that comes with that inability can be overwhelming
Thank you so much for the video 😊. It's really helpfull heard someone talk about holidays that knows what fibro is. It's very lonly. I'm 44, since I start to say no, people left me, think they like the old me, people pleaser, now it's just me, my husband and my 2 girls. It's sad to see, but I'm trying my best to survive and no one understand that. Let them. Once again this is the best video for the holidays 😊 because you know and don't have those crazy ideas like you should do this and that... You know the energy is limited, wish everybody understand that! Kisses from Portugal
After feeling good all morning I suddenly crashed in the middle of the dishes… How happy I was to be able to watch your show while taking a break. You make me feel supported and I even had a few laughs. God bless you, ladies. ❤️🙏
Very helpful. There is no denying how isolating FM is. The season tends to highlight it. I usually use the image of starting out with 18% on my cellphone battery, each day. When it hits five percent, it shuts everything down and prepares for hibernation. It can take days to recharge back to 18%. With family, the metaphors of spoons and marbles work well. I find I have to explain it to people in my church community who see me act fine and then crash. Most of them can grasp cellphone battery management.
I really enjoyed today's show. After years of frustration, I was diagnosed with fibromyalgia in the early 90's. Unfortunately, there are still a lot of doctors out there who still don't know understand those of us who deal with this condition on a daily basis. Thank goodness we have advocates like you two wonderful ladies who can help educate all of us. Thanks for the tips on how to pace ourselves over the holidays.
I was diagnosed at a similar time as you (1994/95). And totally agree. It's also weird that now, rheumatologists will not treat you, whereas before, they were the specialty that had a clue about what fibromyalgia actually was!
Hello dear ladies! Living in the UK, I can't watch your show live. However I have catched up with both episodes so far and I know I will continue to do so. Dr Genivra helped me a lot already by making me comfortable telling my diagnosis to friends and family, understanding that I was not alone, and recognize my various symptoms as real. I like the marbles analogy although I would not know how many marbles to put in my jar. Congratulations and please continue to help us.
Thanks for sharing and we are so happy to hear that Dr. Ginevra has been helpful to you in both understanding Fibro and helping others to understand too.
I was out and about 2 weeks ago and I purchased some eucalyptus oil for my sore back. I started to talk to the owner of the store and mentioned my fibro...she responded with "Oh, I understand!" I almost fell over with joy. Her sis has it and she showed me genuine care and love. What an amazing feeling for me. My hubby is the best anywhere....he does all he can for me but, sometimes I just want to do it all.....
I did learn a long time ago that I can’t plan anything in advance because I can guarantee you that I will have to cancel. I have to do whatever it is I want to do, very last minute and I hate that.
I can really identify with the gluten spoons! I save them for the weekend when I can have a sandwich in a restaurant. I really overdid it over Thanksgiving though and became very achy. I am on my 7th gluten free day and feeling better. Sugar is a biggie too! Thanks for talking about it It really helps to know others are experiencing the same thing.
I’m a guy so the spoon marble thing I just won’t do. I guess one of the questions I have or if there’s some type of database on where one can find reputable doctors who actually believe & have some understanding of fibro. I live amongst a community of doctors and I’ve yet to find one who “really” believes this is a diagnosis of itself and not just a garbage pail that collects the misfits. If a person uses a regular “find a doctor who treats had a, yada yada” you simply get doctors who are taking new patients, but not necessarily ones who actually believe fibromyalgia TY
We love knowing what people think of the spoons and marbles idea. Some folks prefer the broken battery analogy. Great question about a physician referral list. You are right in that there is not currently a great way to find a doctor knowledgable about Fibro. Your best bet is to find a Support Group that can make a recommendation, or you might consider Swing Care which is a new virtual care clinic for Fibro. We are hearing great things about it and their services are covered in multiple states with new ones becoming available yearly. The Fibromyalgia Association would like to build a list of names that are recommended by patients. If you feel comfortable, you might ask this question on the Fibro Association Facebook page as someone may have a recommendation - facebook.com/FibroAssociation. Hope this helps.
I don’t feel comfortable being open about it on facebook, I am thankful that you’re both taking the time to make these videos. I handed a skeptical chiropractor your “Fibro Manual” , although; he didn’t read it entirely, but enough to where he no longer doubts the condition. It’s insane that alcoholism is drug addiction is a “disease”, but fibromyalgia is something that’s to be questioned. I don’t get it
@@thefibroshow It's nice that the Fibromyalgia Association is trying to build a list, but please also consider us that won't use Meta products like Facebook.
Personally I avoid the spoon theory as I think it might limit me in what I can do if I am having a good day. My reason not to do it is that if I see I only have a few spoons left, then I will inadvertently/subconsciously not want to do more. So mind over matter, if I remain positive and try then it’s better than seeing the negative of no spoons left and not bothering. Just my thoughts on it, but I don’t want to discourage those that it works for, we all suffer and deal with it differently. 💜🦋
I like both the spoon and marble analogies though perhaps I prefer marbles just because I like the feel of them in my hands! 😅 Before I had heard about either of these, I used to explain my energy levels to my family and friends using the idea of a house. I’d explain by saying that each day we start with the materials to build a house. We have the bricks, the windows, the doors, the roof tiles etc and each activity we do goes towards constructing the house until by the end of the day we have a mansion and we can sleep restfully and contentedly in our constructed house until we start again the next day. When we are ill or not feeling great, then we don’t get all the house built or we have to build a slightly smaller one. When we have fibromyalgia we don’t realise at first that we only have half or even less of all the materials we need. So we struggle through the day, trying to build the house but we don’t have all the doors and windows, only half the bricks and one third of the roof tiles etc. our house falls down constantly and at the end of the day we have no shelter and we sleep poorly. Eventually we start to understand. We have to build a smaller house. So each day we have to work out the size of house that we can build and then we can sleep better in our little shed, or our tiny house, because we have built exactly what we were capable of. And that also gives a sense of satisfaction and achievement. I hope this analogy makes some sense. My friends and family certainly got it. It’s useful to explain all those ‘oh but I’m tired too’ comments! Anyway, thanks for your energy and input in this podcast. It took me two days to find the energy to watch it but that’s a success, right! 💜
How do you know how many marbles or spoon to start your day with?? And do you start out with all of them in a jar or whatever it is you’re going to put them in? I’m confused on how that part works
Great question. It is trial and error, or rather, trial and learn. A good starting point may be to think about how many activities you do in a day. For example, brushing teeth, making the bed, making breakfast, taking a shower, going to work, working, lunch, etc. You may decide that on average, your “morning routine” is 1 or 3 marbles/spoons, or you may decide each step (brushing teeth, combing hair) is its own marble/spoon. Start with this number and play around with it to see what makes sense. It may also be useful not to get caught up in the quantity for the whole day at first. Maybe break the day into three “batches” - morning, afternoon, and evening. If you are using it to communicate to family your energy levels, it can also be helpful to estimate your marbles/spoons before you know someone will be viewing it. If you are using it to help yourself understand your energy levels than keep experimenting with it. There is no right or wrong way to do it. Hope this helps a bit. Keep us posted on how it works for you.
Online you can find a little pen for your shirt with a battery and a marker, so you can mark your energi level. I think the marbles are amazing as explanation for kids though. I have a Garmin watch that I use, and even though I still have to.feel inside. The body battery function is AMAZING to support managing spoons. It can tell you if a rest is recharging you, you can see if for some reason the some activity just took out a lot, while your still - in flow and don't notice..That way you can stop in time, and preserve energy for later appointments. I try to always keep a reserve in my planning, because unpredictable things happen. And if you saved a little they want get you as hard
It's definitely frustrating how little definitive information we have about fibromyalgia. Research is WAY behind where it should be but catching up fast. Dr. Ginevra's book The FibroManual goes into detail about the science of what we do know is happening in our body with fibromyalgia.
Her video "understanding the chain reaction that causes Fibromyalgia" was mind blowing to me! If you haven't watched it yet, please do! I'm not a medical professional or anything but it really makes sense that 3 body systems are involved.
I would like to know if anyone else that has Fibro ever experiences random bout of itching? I go thru these random bouts of itching, it will be different body parts each time, but always the same ones as well; ex back of my head, certain finger, big toe, tailbone side of my thumbs. Isially just these areas but once that itching starts it goes on for hours sometimes. Nothing I do seems to be able to stop it, like it has to run its course??
It is something people report with Fibro. However please check in with your doctor as other conditions can cause it too. Hopefully some other viewers will share their experiences here too.
I prefer the broken battery analogy to that of spoons or other objects. It won't charge up all the way, it drains quickly, and it charges slowly.
That's a great one! Thanks
That’s spot on, love it! I shall be announcing this to my husband very soon no doubt! ☺️ Thanks.
Ladies, I love the spoons and marbles ideas. However, since my youngest living child is 53, I can just hear one of them enjoying being able to announce, "Mom lost ALL her marbles today!"
LOL that is definitely a drawback to the marbles concept!
😂
I enjoy the show very much. Having been diagnosed in the nineties, after being sharply dismissed by a few physicians who said "fibromyalgia isn't even a thing." I finally found a diagnosis, and a physician who overmedicated me for eight years. I was a hospice social worker and had Stage IV cancer patients on less morphine than I was taking. Constantly fought sleep behind the wheel of my car every day. So finally went off cold turkey when the doctor refused to help me wean off. Then I went to a detox center when I got out of the hospital, where they took me when they found me unconscious during the cold turkey attempt. After the detox, (suboxone treatment--which I never took again after I left there), I went to 12 step meetings for several years with Celebrate Recovery, became part of the leadership team, then left it to take the GriefShare ministry at our church. I just retired from that last year, after fifteen years of service.
I said all that to say that only my late husband ever took the time to understand fibromyalgia.
Thankfully most doctors these days at least believe in fibromyalgia being real! And opioids can be helpful in some cases but also carry so many risks.
@@evelynseaton1754 I had the same experience being diagnosed in the late 90’s after a serious car accident. I had one neurologist actually tell me that my only issue was that I was severely obese and needed a home exercise program, keep in mind I was 5’2’ tall and only weighed 146 at the time. I was a bit overweight yes, but far from severely obese. The neurologist weighed every bit of 375-400 lbs himself. About 6minths after that he had a massive heart attack and nearly died. It really hurts you to your core when no one believes you and the amount of pain you’re in. So glad to hear that your husband supports you.
I am forever overdoing things, I never seem to learn! I am then cross with myself, and spend the three day recovery time beating myself up!🤦♀️🙄 Thank you both for your invaluable time and support once again, see you next Friday. 😊😘😘
Well said! So glad you are enjoying the show!
I appreciate the lonely talk. I love Christmas and usually am one of those obnoxious people that decorate the whole inside and outside of house. I am alone but usually kinda love the alone lifestyle. I have had such a sick year - i didn't even put up a tree. I don't have the spoons to "do it all" anymore - or at least this year and the guilt that comes with that inability can be overwhelming
Thank you so much for the video 😊. It's really helpfull heard someone talk about holidays that knows what fibro is. It's very lonly. I'm 44, since I start to say no, people left me, think they like the old me, people pleaser, now it's just me, my husband and my 2 girls. It's sad to see, but I'm trying my best to survive and no one understand that. Let them.
Once again this is the best video for the holidays 😊 because you know and don't have those crazy ideas like you should do this and that... You know the energy is limited, wish everybody understand that!
Kisses from Portugal
After feeling good all morning I suddenly crashed in the middle of the dishes… How happy I was to be able to watch your show while taking a break. You make me feel supported and I even had a few laughs. God bless you, ladies. ❤️🙏
Thanks for this wonderful comment! We are so glad we could provide some support and laughs when you needed it.💜
Very helpful. There is no denying how isolating FM is. The season tends to highlight it.
I usually use the image of starting out with 18% on my cellphone battery, each day. When it hits five percent, it shuts everything down and prepares for hibernation. It can take days to recharge back to 18%. With family, the metaphors of spoons and marbles work well. I find I have to explain it to people in my church community who see me act fine and then crash. Most of them can grasp cellphone battery management.
The marbles and spoons definitely require more explanation, and the cell phone battery analogy is so accurate!!
I really enjoyed today's show. After years of frustration, I was diagnosed with fibromyalgia in the early 90's. Unfortunately, there are still a lot of doctors out there who still don't know understand those of us who deal with this condition on a daily basis. Thank goodness we have advocates like you two wonderful ladies who can help educate all of us. Thanks for the tips on how to pace ourselves over the holidays.
You are right that many doctors still do not understand Fibro. We are working to improve this. Thanks for sharing.
I was diagnosed at a similar time as you (1994/95). And totally agree. It's also weird that now, rheumatologists will not treat you, whereas before, they were the specialty that had a clue about what fibromyalgia actually was!
Hello dear ladies! Living in the UK, I can't watch your show live. However I have catched up with both episodes so far and I know I will continue to do so. Dr Genivra helped me a lot already by making me comfortable telling my diagnosis to friends and family, understanding that I was not alone, and recognize my various symptoms as real. I like the marbles analogy although I would not know how many marbles to put in my jar. Congratulations and please continue to help us.
Thanks for sharing and we are so happy to hear that Dr. Ginevra has been helpful to you in both understanding Fibro and helping others to understand too.
I’ve listened to many of Dr. Ginevra videos and also have your book The Fibro Manual! So happy to find you both!
I was out and about 2 weeks ago and I purchased some eucalyptus oil for my sore back. I started to talk to the owner of the store and mentioned my fibro...she responded with "Oh, I understand!" I almost fell over with joy. Her sis has it and she showed me genuine care and love. What an amazing feeling for me. My hubby is the best anywhere....he does all he can for me but, sometimes I just want to do it all.....
Being understood is such a good feeling💛 We are hoping this show helps people know there are people who understand. Thanks for sharing.
Thank you SO much for the advice.
I did learn a long time ago that I can’t plan anything in advance because I can guarantee you that I will have to cancel. I have to do whatever it is I want to do, very last minute and I hate that.
I understand that feeling.
Thank you both!!!!!!!
I can really identify with the gluten spoons! I save them for the weekend when I can have a sandwich in a restaurant. I really overdid it over Thanksgiving though and became very achy. I am on my 7th gluten free day and feeling better. Sugar is a biggie too! Thanks for talking about it It really helps to know others are experiencing the same thing.
Welcome and thanks for sharing!
I have just found you, thank you.
Welcome!
Excellent video! My thanks to both of you!
Yay! So glad you enjoyed it!
I’m a guy so the spoon marble thing I just won’t do. I guess one of the questions I have or if there’s some type of database on where one can find reputable doctors who actually believe & have some understanding of fibro. I live amongst a community of doctors and I’ve yet to find one who “really” believes this is a diagnosis of itself and not just a garbage pail that collects the misfits. If a person uses a regular “find a doctor who treats had a, yada yada” you simply get doctors who are taking new patients, but not necessarily ones who actually believe fibromyalgia TY
We love knowing what people think of the spoons and marbles idea. Some folks prefer the broken battery analogy. Great question about a physician referral list. You are right in that there is not currently a great way to find a doctor knowledgable about Fibro. Your best bet is to find a Support Group that can make a recommendation, or you might consider Swing Care which is a new virtual care clinic for Fibro. We are hearing great things about it and their services are covered in multiple states with new ones becoming available yearly. The Fibromyalgia Association would like to build a list of names that are recommended by patients. If you feel comfortable, you might ask this question on the Fibro Association Facebook page as someone may have a recommendation - facebook.com/FibroAssociation. Hope this helps.
I don’t feel comfortable being open about it on facebook, I am thankful that you’re both taking the time to make these videos. I handed a skeptical chiropractor your “Fibro Manual” , although; he didn’t read it entirely, but enough to where he no longer doubts the condition. It’s insane that alcoholism is drug addiction is a “disease”, but fibromyalgia is something that’s to be questioned. I don’t get it
@@thefibroshow It's nice that the Fibromyalgia Association is trying to build a list, but please also consider us that won't use Meta products like Facebook.
@@AncTreat5358thanks for this comment. It is very helpful.😊
Very helpful video merry Christmas everyone
Happy holidays!
Personally I avoid the spoon theory as I think it might limit me in what I can do if I am having a good day. My reason not to do it is that if I see I only have a few spoons left, then I will inadvertently/subconsciously not want to do more. So mind over matter, if I remain positive and try then it’s better than seeing the negative of no spoons left and not bothering. Just my thoughts on it, but I don’t want to discourage those that it works for, we all suffer and deal with it differently. 💜🦋
Thanks for sharing your perspective! Spoon (or marbles) theory definitely does not resonate for everyone.
I like both the spoon and marble analogies though perhaps I prefer marbles just because I like the feel of them in my hands! 😅
Before I had heard about either of these, I used to explain my energy levels to my family and friends using the idea of a house. I’d explain by saying that each day we start with the materials to build a house. We have the bricks, the windows, the doors, the roof tiles etc and each activity we do goes towards constructing the house until by the end of the day we have a mansion and we can sleep restfully and contentedly in our constructed house until we start again the next day. When we are ill or not feeling great, then we don’t get all the house built or we have to build a slightly smaller one. When we have fibromyalgia we don’t realise at first that we only have half or even less of all the materials we need. So we struggle through the day, trying to build the house but we don’t have all the doors and windows, only half the bricks and one third of the roof tiles etc. our house falls down constantly and at the end of the day we have no shelter and we sleep poorly. Eventually we start to understand. We have to build a smaller house. So each day we have to work out the size of house that we can build and then we can sleep better in our little shed, or our tiny house, because we have built exactly what we were capable of. And that also gives a sense of satisfaction and achievement.
I hope this analogy makes some sense. My friends and family certainly got it. It’s useful to explain all those ‘oh but I’m tired too’ comments!
Anyway, thanks for your energy and input in this podcast. It took me two days to find the energy to watch it but that’s a success, right! 💜
LOVE the house analogy!
But I find my range of doing things varies from day to day but there definitely times I over do it
How do you know how many marbles or spoon to start your day with?? And do you start out with all of them in a jar or whatever it is you’re going to put them in? I’m confused on how that part works
Great question. It is trial and error, or rather, trial and learn. A good starting point may be to think about how many activities you do in a day. For example, brushing teeth, making the bed, making breakfast, taking a shower, going to work, working, lunch, etc. You may decide that on average, your “morning routine” is 1 or 3 marbles/spoons, or you may decide each step (brushing teeth, combing hair) is its own marble/spoon. Start with this number and play around with it to see what makes sense. It may also be useful not to get caught up in the quantity for the whole day at first. Maybe break the day into three “batches” - morning, afternoon, and evening. If you are using it to communicate to family your energy levels, it can also be helpful to estimate your marbles/spoons before you know someone will be viewing it. If you are using it to help yourself understand your energy levels than keep experimenting with it. There is no right or wrong way to do it. Hope this helps a bit. Keep us posted on how it works for you.
Online you can find a little pen for your shirt with a battery and a marker, so you can mark your energi level. I think the marbles are amazing as explanation for kids though.
I have a Garmin watch that I use, and even though I still have to.feel inside. The body battery function is AMAZING to support managing spoons. It can tell you if a rest is recharging you, you can see if for some reason the some activity just took out a lot, while your still - in flow and don't notice..That way you can stop in time, and preserve energy for later appointments. I try to always keep a reserve in my planning, because unpredictable things happen. And if you saved a little they want get you as hard
I have never seen that and will check it out! I am so glad you found Garmin to be a helpful tool. Thanks for sharing it with all of us😊
I am so frustrated because, in all my research, I still have not found a definitive answer to what causes Fibromyalgia.
It's definitely frustrating how little definitive information we have about fibromyalgia. Research is WAY behind where it should be but catching up fast. Dr. Ginevra's book The FibroManual goes into detail about the science of what we do know is happening in our body with fibromyalgia.
Her video "understanding the chain reaction that causes Fibromyalgia" was mind blowing to me! If you haven't watched it yet, please do! I'm not a medical professional or anything but it really makes sense that 3 body systems are involved.
I would like to know if anyone else that has Fibro ever experiences random bout of itching? I go thru these random bouts of itching, it will be different body parts each time, but always the same ones as well; ex back of my head, certain finger, big toe, tailbone side of my thumbs. Isially just these areas but once that itching starts it goes on for hours sometimes. Nothing I do seems to be able to stop it, like it has to run its course??
It is something people report with Fibro. However please check in with your doctor as other conditions can cause it too. Hopefully some other viewers will share their experiences here too.
I itch everyday. I know others with fibro that do.