Thank you for hosting Brandi and Melissa for this episode! It's going to take a community effort for us to make the necessary changes we need for the entire fibromyalgia community to benefit.
Thank you for having us! This was a great discussion and Dr. Chadwick's perspective was valuable. Lots of great tips and insights! Thank you to the Swing Care team for all you've done for our fibro community!
Thank you so much for this. I've been dreading/ and anticipating a new doctor and I'm going there in an hour. My list is made, it's a new Rheumatologist through UPMC who came highly recommended. This has helped me make my list, and here goes...
@@katkohlerschwartz7386 it was pretty awful. He ended with "this is the third rheumatologist you've seen so I don't feel the need to further see you for Fibromyalgia. You've been diagnosed with Fibro which your PCP can manage." I explained that I follow my PCP and have gone to rheumatology only when suggested in relation to labs or something the PCP felt needed to be reviewed. I actually had to say "I'm not here for confirmation of my diagnosis as your stating, I'm here because Hematology found my labs were not right". He circled back... so I, in turn, found a FB group called LDN for chronic illness. Been on it for a month now and my pain is down by 25-30%.
Im 57 and have had Fibro for 57 years. Diagnosed at 23. Its a ride. But ive had it from go, so through childhood, it was just a thing thst caused alot of missed school. My lother gired pediatrition when i was 5 for calling it growing pains. Lol Im ever sorry for thise who get it as an adult. Or after hitting puberty. When i had tge worst flare up besides my first birth. When i had DROP. i gir hime snd my pelvis just gave out fir months. Thats when i was diagnosed. "IT" FINALLY HAD A NAME. the foc was cobering gor mine.. WHEN HE WENT TO A CONFERENCE TO LEARN ABOUT SOME NEWLY NAMED DISEASE.!! AND THE DOC COVERING?... WAS A LEAD DOC AT HARVARD THAT JUST COMPLETED A TEN YEAR STUDY ON IT. sent to a rhuematologist, top in his field.. even still.. 6 months if phsyco therapy, 8 months intensive PT retraining every muscle, stregthening, and reversing compensation issues, reflex dystrophy. I hot four years of ZREAL LIFE. worked normal hours, went to college. Then FELL. been unemployable since. At 38. I had that PT again. SPORTS MEDICINE. ( Id been in pt all those years but theyvwere pyshingvtona wheel chair.) But this guy,, BEAT THE CRAP OUT IF MY TENDONS LIGAMENTS AND MUSCLES.. , alongvwith Her that did Cranial Sacral Emotional Realease first, and Masssage Gitl fir 7 months. The PT guy HURT. BUT IN WEEKS, I DTOOD UP STRAIGHT THE FIRST TIME IN 12 YEARS. DID WELL NEXT 15 YEARS.. AND... FELLL AGAIN RIGHT BEFORE COVID. NO SHOTTS. DUCK AND COVER, LOL HOME PT TO MAINTAIN. ABOUT TO START NEW PT GUY.. ONE THAT WILL AGAIN BEAT ME UP. ( I Moved after last one, and been to 12 here but NONE do the deep tissue work, so PT is not effective when you have toght bound fascia, tendons and ligaments. But ive prevented the reflex dystrophy at least. I have a life, then i have the life i fall back on, and routine, when it sux. Dont eat dirty food. Prepacked, cornsyrup preservative laden food. I eat fresh grass fed meats, organic produce, sweet is maple syrup and honey. And fruits IN SEASON. I CHUG ALONG, I can offer, my pain is no worse than when i was 8. Hbp, thyroid, glucose intolerance in cycles as fascia toghtens around randon places and traffic thyroid cop isnt directing traffic. I take none of tge pharmaceutacals offered, except flareups, i take trazadone on way to bed to regulate sleep cycles , when the days get short in november, i go to bed a couple hours after dark, reset circadian rythym. I do that till february. When my kids were home and little. I slept when they were at school. Housework can be done anytime in a 24 hr span. Besides, most of my friends went to work, i had kids afterschool till they got hime.. Long haul covid reactivated it after the fall and covid. Its fibro on steriods, every symptom you could have with gibro comes all at the same time. Still dealing with it, but only because i refused to get shot to go to PT. Which was just lifted in january this year. On naloxone, MAKE SURE ITS FIBRO AND NOT A REPAIRABLE ISSUE OR CUREABLE! IT WORKS WELL, BUT. IF YOU HEAL, FIX IT AND WANT TO COME OFF OF IT, ITS THE WORST DETOX EVER. And can cause drug seeking behavior even at low dose. So when patients consider it for Fibro, consider thecrest of your life.. which , longterm use has been found "safe" , It "replaces" the or the ability to produce adrenaline, dopeamine and seratonin on your own, which is why tge detox is so bad andcit can take months of taper and skip to promt tge body to do it again itself. I opted not to switch from my opiates, i been on since clinical trial in the 90s. Same dose in winter, half in summer, As long as you never take more than the edga off pain to get tf up and move and induce an adrenaline/ dopamin release, you need not get addicted. I have plenty of days in warm weatherci take none. I dont even think about it.. i AM dependant, to get up and move, but once im moving, im on my own the rest of the day. The eorst thing you can do is lie awake when you wake up and take a pain inventory, wake up and get up BEFORE it floods in. WEAK MUSCLES JUST HURT MORE. My pain threshold is so high, docs are sure i understate my rating. Im sure too, but likevibsaid, ive always had my buddy... Pain. PT initially, will INCREASE PAIN, muscles that are overworked and muscles underworked.. will hurt. But push for a month snd it gets better, you wake up on like week 6 and realize you got right up. Many cant tolerate and just dontvexpect the pain to increase at the start of pt. Go slow. It can take 3 to 4 months for muscles to retrain, and stregthen. PT is a longterm commitment that combinesld with musclework, can get your life back. But its a full time job and commitment, dont plan much rlse for tge first two months, do only what HAS to get done, the rest will wait. I refused even tylenol till i was over 30. I had food poisoning and was hospitalized a week. THAT WAS WORSE than all 3 labors,, which i had no drugs no epidural. It just did not dawn on me to ask. Or discuss it with obgyn. The food poisoning was worse.. and i lost a twin of my daughter during it. My "soccer mom" fibromaniacs.. im sorry you got this. Not wish on even my enemies. ( Well, maybe Fouci, seeing he picked up with tge bioweapons research after his boss released exposures in 68 to 72.. and i already had epstien barr by then. (Prequel to THE REAL ANTHONY FOUCI, Coming soon) but anyway, its contagious too. All my kids have the possibikity of activation. I kept them healthy, diets exercise and fresh air.. one has it now.. but dealing like a champ. The MENTAL part is... IS. IS UP TO YOU. ONLY YOU CAN DO THE GRUELING WORK TO SUSTAIN MUSCLES TENDON AND LIGAMENTS, DOCS CANT DO PT FOR YOU. AND DRUGS CANT HEAL YOU. OR YOUR GUT BIOME, what you put in your body, makes or breaks this. Get candida under control. Balance tge gut biome to reduce IBS. My diet is AMAAAZING!! I eat what was before industrial revolution, my cookbook favorite is an 1800s church community cook book, and my amish ones. NO BETTY CRICKER BOOK ON MY SHELF! NO PREPACKAGED INGREDIENTS. I COOK FROM SCRATCH 90%.. I leave ten percent to "junk food" like cereal, pbj, maybe chips, but never doritos , power aids, ect. If i want a mocha latte, im making it.. no protien powders either, unless im.trying to put weight BACK ON. when my thyroid goes hyper. What you ladies speak about, is solid advice. My intuition as a child, dealing eith snd what to do, are now mainstream capitalized on legit treatments.. naturalpathic, homeopathic medicine is best to work towards after main stream medical gets you relief. Learn to mentally combat and live eith some smount if psin, youll never really be pain free, but you brain can be trained to get distracted from it.. and getting up, each day, slow and sure,, is tge start. Dont letvit keep you on a couch sll day. Lay down: sleep,. Awake, getvup. Even if you are doing mindless stuff, i break up kindling. Move rocks , fold clothes.. minor stiff gets me tonthe major stuff. God bless you all. Doctors patients, teachers and students,
Me too I am suffering so bad I need help yes I do see a doctor rheumatoid arthritis doctor, and my primary care doctor and my heart doctor because it being in so much pain. My blood pressure goes high and my job. Don’t see that as being the disable I’m just existing in this world with Pain
I have been told by my provider that they don't have anyone who treats fibromyalgia, including in rheumatology. It's frustrating! So, I'm having to suggest treatments to my primary care physician. Fortunately, he is somewhat open to this. He has a terrible "bedside manner" though. Do you know of any physician in the San Diego area that truly specializes in Fibromyalgia?
Rheumatology offices are filled with autoimmune patients, so they are deferring fibromyalgia to primary care. "Specialists" are very few and treatments can differ. Swing Care is unique with having Dr. Chadwick as their Medical Director. We're hoping they will open up in other states soon. We're based in California. I'm assuming you are looking for someone covered by insurance? There are some solid Naturopathic Doctors, but that is out of pocket. A rheumatologist that treats fibromyalgia patients is in Covina. Let me talk to my orange country friends to see if the doctor's have retired. It's not easy finding someone.
Our areas Rheumatologists don't treat fibromyalgia because they believe it can be treated by a PCP which it has not been. Help! Suffering for many years. Savella has helped some but I can't take enough because it causes bowel issues. Cymbalta gives me laryngeal spasms and Lyrica makes me feel crazy. Any ideas? The changing in weather are terrible.
Yes, it's frustrating because they defer to primary care. We haven't trained and given enough resources to them for fibromyalgia. Many of us also have side effects to the meds as well, leaving us to figure things out on our own. If you are in a state that Swing Care serves, check them out. I know Dr. Chadwick speaks about things like LDN and the Swing Care applications for some of her patients.
Co workers know I have fibromyalgia. Now they are isolating me & running away during lunch when we are sitting outside….who knows what there false assumptions & judgements are….not sure what to say or do?
I'm so sorry! You are not alone! Millions of us are diagnosed with fibromyalgia and we're fighting the stigmas. It's very real. I would sit at lunch with you and throw down some science for them. Swing Care has the video with Dr. Clauw and Dr. Chadwick, if they are open to watching. Sending you hugs!! 💜
Thank you for hosting Brandi and Melissa for this episode! It's going to take a community effort for us to make the necessary changes we need for the entire fibromyalgia community to benefit.
Thank you for having us! This was a great discussion and Dr. Chadwick's perspective was valuable. Lots of great tips and insights! Thank you to the Swing Care team for all you've done for our fibro community!
Thank you so much for this. I've been dreading/ and anticipating a new doctor and I'm going there in an hour. My list is made, it's a new Rheumatologist through UPMC who came highly recommended. This has helped me make my list, and here goes...
How did the appointment go Beth? Sending you good vibes! Thank you so much for watching. Pleas keep us posted.
How did your appointment go with the new Rheumatologist?
@@katkohlerschwartz7386 it was pretty awful. He ended with "this is the third rheumatologist you've seen so I don't feel the need to further see you for Fibromyalgia. You've been diagnosed with Fibro which your PCP can manage." I explained that I follow my PCP and have gone to rheumatology only when suggested in relation to labs or something the PCP felt needed to be reviewed. I actually had to say "I'm not here for confirmation of my diagnosis as your stating, I'm here because Hematology found my labs were not right". He circled back... so I, in turn, found a FB group called LDN for chronic illness. Been on it for a month now and my pain is down by 25-30%.
I suffer 24/7 from fibromyalgia
I know what you mean. 😢
It's in our lives all the time. Group hugs!
Yeah any relief found
Me too, I have been put on Methadone and it is terrible 😢
The question of how we get our children to do understand fibromyalgia & to bridge the gap? I am struggling with a lot……
Hi Sara, please do connect with Brandi. She founded Being Fibro Mom and has a group of supportive parents.
Im 57 and have had Fibro for 57 years.
Diagnosed at 23.
Its a ride. But ive had it from go, so through childhood, it was just a thing thst caused alot of missed school.
My lother gired pediatrition when i was 5 for calling it growing pains. Lol
Im ever sorry for thise who get it as an adult. Or after hitting puberty. When i had tge worst flare up besides my first birth. When i had DROP. i gir hime snd my pelvis just gave out fir months. Thats when i was diagnosed. "IT" FINALLY HAD A NAME.
the foc was cobering gor mine.. WHEN HE WENT TO A CONFERENCE TO LEARN ABOUT SOME NEWLY NAMED DISEASE.!! AND THE DOC COVERING?... WAS A LEAD DOC AT HARVARD THAT JUST COMPLETED A TEN YEAR STUDY ON IT.
sent to a rhuematologist, top in his field.. even still..
6 months if phsyco therapy, 8 months intensive PT retraining every muscle, stregthening, and reversing compensation issues, reflex dystrophy.
I hot four years of ZREAL LIFE. worked normal hours, went to college.
Then FELL. been unemployable since.
At 38. I had that PT again. SPORTS MEDICINE.
( Id been in pt all those years but theyvwere pyshingvtona wheel chair.) But this guy,, BEAT THE CRAP OUT IF MY TENDONS LIGAMENTS AND MUSCLES.. , alongvwith Her that did Cranial Sacral Emotional Realease first, and Masssage Gitl fir 7 months.
The PT guy HURT. BUT IN WEEKS, I DTOOD UP STRAIGHT THE FIRST TIME IN 12 YEARS.
DID WELL NEXT 15 YEARS.. AND... FELLL AGAIN RIGHT BEFORE COVID.
NO SHOTTS. DUCK AND COVER, LOL HOME PT TO MAINTAIN.
ABOUT TO START NEW PT GUY.. ONE THAT WILL AGAIN BEAT ME UP. ( I Moved after last one, and been to 12 here but NONE do the deep tissue work, so PT is not effective when you have toght bound fascia, tendons and ligaments. But ive prevented the reflex dystrophy at least.
I have a life, then i have the life i fall back on, and routine, when it sux.
Dont eat dirty food. Prepacked, cornsyrup preservative laden food.
I eat fresh grass fed meats, organic produce, sweet is maple syrup and honey. And fruits IN SEASON.
I CHUG ALONG,
I can offer, my pain is no worse than when i was 8.
Hbp, thyroid, glucose intolerance in cycles as fascia toghtens around randon places and traffic thyroid cop isnt directing traffic.
I take none of tge pharmaceutacals offered, except flareups, i take trazadone on way to bed to regulate sleep cycles , when the days get short in november, i go to bed a couple hours after dark, reset circadian rythym. I do that till february.
When my kids were home and little. I slept when they were at school. Housework can be done anytime in a 24 hr span. Besides, most of my friends went to work, i had kids afterschool till they got hime..
Long haul covid reactivated it after the fall and covid. Its fibro on steriods, every symptom you could have with gibro comes all at the same time. Still dealing with it, but only because i refused to get shot to go to PT. Which was just lifted in january this year.
On naloxone, MAKE SURE ITS FIBRO AND NOT A REPAIRABLE ISSUE OR CUREABLE! IT WORKS WELL, BUT. IF YOU HEAL, FIX IT AND WANT TO COME OFF OF IT, ITS THE WORST DETOX EVER.
And can cause drug seeking behavior even at low dose. So when patients consider it for Fibro, consider thecrest of your life.. which , longterm use has been found "safe" , It "replaces" the or the ability to produce adrenaline, dopeamine and seratonin on your own, which is why tge detox is so bad andcit can take months of taper and skip to promt tge body to do it again itself.
I opted not to switch from my opiates, i been on since clinical trial in the 90s. Same dose in winter, half in summer,
As long as you never take more than the edga off pain to get tf up and move and induce an adrenaline/ dopamin release, you need not get addicted. I have plenty of days in warm weatherci take none. I dont even think about it.. i AM dependant, to get up and move, but once im moving, im on my own the rest of the day.
The eorst thing you can do is lie awake when you wake up and take a pain inventory, wake up and get up BEFORE it floods in. WEAK MUSCLES JUST HURT MORE.
My pain threshold is so high, docs are sure i understate my rating. Im sure too, but likevibsaid, ive always had my buddy... Pain.
PT initially, will INCREASE PAIN, muscles that are overworked and muscles underworked.. will hurt. But push for a month snd it gets better, you wake up on like week 6 and realize you got right up. Many cant tolerate and just dontvexpect the pain to increase at the start of pt. Go slow. It can take 3 to 4 months for muscles to retrain, and stregthen. PT is a longterm commitment that combinesld with musclework, can get your life back. But its a full time job and commitment, dont plan much rlse for tge first two months, do only what HAS to get done, the rest will wait.
I refused even tylenol till i was over 30. I had food poisoning and was hospitalized a week. THAT WAS WORSE than all 3 labors,, which i had no drugs no epidural. It just did not dawn on me to ask. Or discuss it with obgyn. The food poisoning was worse.. and i lost a twin of my daughter during it.
My "soccer mom" fibromaniacs.. im sorry you got this. Not wish on even my enemies. ( Well, maybe Fouci, seeing he picked up with tge bioweapons research after his boss released exposures in 68 to 72.. and i already had epstien barr by then. (Prequel to THE REAL ANTHONY FOUCI, Coming soon) but anyway, its contagious too.
All my kids have the possibikity of activation. I kept them healthy, diets exercise and fresh air.. one has it now.. but dealing like a champ.
The MENTAL part is... IS.
IS UP TO YOU. ONLY YOU CAN DO THE GRUELING WORK TO SUSTAIN MUSCLES TENDON AND LIGAMENTS, DOCS CANT DO PT FOR YOU. AND DRUGS CANT HEAL YOU.
OR YOUR GUT BIOME, what you put in your body, makes or breaks this. Get candida under control. Balance tge gut biome to reduce IBS.
My diet is AMAAAZING!!
I eat what was before industrial revolution, my cookbook favorite is an 1800s church community cook book, and my amish ones. NO BETTY CRICKER BOOK ON MY SHELF! NO PREPACKAGED INGREDIENTS. I COOK FROM SCRATCH 90%.. I leave ten percent to "junk food" like cereal, pbj, maybe chips, but never doritos , power aids, ect. If i want a mocha latte, im making it.. no protien powders either, unless im.trying to put weight BACK ON. when my thyroid goes hyper.
What you ladies speak about, is solid advice.
My intuition as a child, dealing eith snd what to do, are now mainstream capitalized on legit treatments.. naturalpathic, homeopathic medicine is best to work towards after main stream medical gets you relief.
Learn to mentally combat and live eith some smount if psin, youll never really be pain free, but you brain can be trained to get distracted from it.. and getting up, each day, slow and sure,, is tge start. Dont letvit keep you on a couch sll day. Lay down: sleep,. Awake, getvup. Even if you are doing mindless stuff, i break up kindling. Move rocks , fold clothes.. minor stiff gets me tonthe major stuff.
God bless you all. Doctors patients, teachers and students,
So does ldn stop brain chemistry ling term on 6 months no help fo pain but cured IBS
You have so many spelling mistakes hard to follow what you said
Thank you for this interview. Doctors limit us on only one symptom at a time, when fibromyalgia is systemic. How do we advocate to medical schools?
Me too I am suffering so bad I need help yes I do see a doctor rheumatoid arthritis doctor, and my primary care doctor and my heart doctor because it being in so much pain. My blood pressure goes high and my job. Don’t see that as being the disable
I’m just existing in this world with Pain
😢sam to you
Are you getting enough medical support? Let us know how we support you. It's really debilitating if things are not addressed.
I have been told by my provider that they don't have anyone who treats fibromyalgia, including in rheumatology. It's frustrating! So, I'm having to suggest treatments to my primary care physician. Fortunately, he is somewhat open to this. He has a terrible "bedside manner" though. Do you know of any physician in the San Diego area that truly specializes in Fibromyalgia?
Rheumatology offices are filled with autoimmune patients, so they are deferring fibromyalgia to primary care. "Specialists" are very few and treatments can differ. Swing Care is unique with having Dr. Chadwick as their Medical Director. We're hoping they will open up in other states soon. We're based in California. I'm assuming you are looking for someone covered by insurance? There are some solid Naturopathic Doctors, but that is out of pocket. A rheumatologist that treats fibromyalgia patients is in Covina. Let me talk to my orange country friends to see if the doctor's have retired. It's not easy finding someone.
Our areas Rheumatologists don't treat fibromyalgia because they believe it can be treated by a PCP which it has not been. Help! Suffering for many years. Savella has helped some but I can't take enough because it causes bowel issues. Cymbalta gives me laryngeal spasms and Lyrica makes me feel crazy. Any ideas? The changing in weather are terrible.
Yes, it's frustrating because they defer to primary care. We haven't trained and given enough resources to them for fibromyalgia. Many of us also have side effects to the meds as well, leaving us to figure things out on our own. If you are in a state that Swing Care serves, check them out. I know Dr. Chadwick speaks about things like LDN and the Swing Care applications for some of her patients.
Is fibromyalgia undiagnosed Lyme?
What is LDN
Low dose Naltrexone
Co workers know I have fibromyalgia. Now they are isolating me & running away during lunch when we are sitting outside….who knows what there false assumptions & judgements are….not sure what to say or do?
I'm so sorry! You are not alone! Millions of us are diagnosed with fibromyalgia and we're fighting the stigmas. It's very real. I would sit at lunch with you and throw down some science for them. Swing Care has the video with Dr. Clauw and Dr. Chadwick, if they are open to watching. Sending you hugs!! 💜