Hi, my name is GracefullyDisabled.
I was diagnosed with hEDS, POTS, and MCAS several years ago and was recently diagnosed with gastroparesis. I’m here to connect with others like me—share health tips and resources and engage in community.
#MightyTogether #ehlers-DanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #MastCellActivationDisorder #Gastroparesis #Anxiety
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Hi, my name is RareFlycatcher192. I've been diagnosed with MCAS. I have had this for 12 years. I was pleasantly surprised to see the pictures and quotes on the subject.
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Hi, my name is Susancl70.
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I really want there to be something as easy as diet change to fix my symptoms but it doesn’t seem like the low histamine diet has really been proven to be helpful. I’m having a bad flare up right now. I just don’t want to make my life harder than it has to be by following a restrictive diet for no reason. I have identified a few food triggers over the years and I avoid those strictly.
I’m continually confused by cheese. I can’t seem to understand if I can have it or not. Another stumper is soy (soy milk, tofu, soybeans). The fact is I may never know what causes my flare ups. It’s just hard to accept the reality that I have no control in this.
I know this is not a very active thread but I hope we can breathe some life into it. I would love some support for MCAS.
Anyone tried this diet?
2 reactions Hi, my name is IntersexEnbySeahorse. I've been diagnosed with Mast Cell Activation Syndrome , Post or static tachycardia syndrome, and hEDS….
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I have been dealing with a situation that has culminated in my son facing criminal charges as well as civil penalties involving vulnerable adult abuse against me. It is all finally coming to a head and hopefully the end is in sight without completely distorting our parent child relationship. My current situation is that the extreme distress has caused my first physically overwhelming consequences. A week ago today I broke out in hives that keep getting worse. Some of them started blistering yesterday. I am in an assisted living facility and a histamine diet is not possible. The residence claims they can’t do that and stay within state mandates. Benadryl is not doing anything. I don’t know what else I can do for some relief. Suggestions and ideas no matter how crazy they might be? I do not have a current physician that is familiar with MCAS. I have an appointment with a new allergist/immunologist but not for another 6 weeks! I have so many symptoms besides this both mental and physical health related. But this is the most urgent at this point. ANY and ALL suggestions are welcome… #PTSD #MastCellActivationDisorder #Histaminediet #vulnerableadult #Abuse # #Hives #BorderlinePersonalityDisorder #Anxiety #DID #MentalHealth #Insomnia #MajorDepression #HEDS #AutonomicDysfunction
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I was diagnosed about 15 years ago with just so Neue hypoallergic pots gastroparesis and later on MCAS before that decades of what they called fibromyalgia con fatigue syndrome, many miscarriages, and a lot of what they call just happened to be bad luck medical situations. I was recently sent to a pain management Specialist by another pain management Doctor Who worked with my spine doctor. He wanted me to have a consult with this person this person went over my extensive medical history examined me, and I told him I do not have a history of being super flexible if anything always uncoordinated and clumsy While my some of my kids are very flexible and can do all those wrist and arm things that I cannot do he examined me as I’m dealing with yet another episode of a side joint syndrome and then looked at me and said you REDS you have been all this time Is this possible as for all these years the doctors have been trying to figure out where my just saw Denoia came from as mine has gotten worse and worse over the last few years I have many specialist, dealing with each part of my body for my gastroparesis for a neurologically, my proprioception and Gate and Balance And I’m very sensitive to all medication which I’ve been told could be my mass cell issues. I guess I’m just right now Steine after seeing so many doctors for so many years any input or thought would be very welcomed and appreciated. Bless you.
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About Pots,fibromyalgia,ehlers-danlos,&chronic-fatigue
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do you suffer from all 4..?? or have tips on how to manage them all at once?
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sue Lindsay
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Diagnosed EDS at 72 yrs ?
I’m still wondering if this is possible . I have dysautonomia diagnosed over 15 years ago, seen by some of the best was told I had pot hyper adrenergic form and a bunch of other initials. Fast forward a few years later the IBS was gastroparesis and the rashes were MCAS. Neurologically, they thought it was MS, but it wasn’t trouble with Balance gate and proprioceptor. Pain throughout my body has been as far back as I can remember. But having someone tell me this this far into the game now I’m just wondering is it really possible that no one picked it up until now or should I take this diagnosis with a grain of salt. I was referred to this specialist a pain management facility and this person has a special interest with EDS patients. Went over my complete medical history from childhood to now and had a family member take me and examine that person briefly who is very hyper flexible but I am not and that’s what always made me believe there could be no connection. Any opinions are appreciated. God bless you all.
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About Pots,fibromyalgia,ehlers-danlos,&chronic-fatigue
Create a new post for group Post to Group
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do you suffer from all 4..?? or have tips on how to manage them all at once?
94
Members
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Anniecom
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Post
sue Lindsay
1m
Diagnosed EDS at 72 yrs ?
I’m still wondering if this is possible . I have dysautonomia diagnosed over 15 years ago, seen by some of the best was told I had pot hyper adrenergic form and a bunch of other initials. Fast forward a few years later the IBS was gastroparesis and the rashes were MCAS. Neurologically, they thought it was MS, but it wasn’t trouble with Balance gate and proprioceptor. Pain throughout my body has been as far back as I can remember. But having someone tell me this this far into the game now I’m just wondering is it really possible that no one picked it up until now or should I take this diagnosis with a grain of salt. I was referred to this specialist a pain management facility and this person has a special interest with EDS patients. Went over my complete medical history from childhood to now and had a family member take me and examine that person briefly who is very hyper flexible but I am not and that’s what always made me believe there could be no connection. Any opinions are appreciated. God bless you all.
6 reactions I’m still wondering if this is possible . I have dysautonomia diagnosed over 15 years ago, seen by some of the best was told I had pot hyper adrenergic form and a bunch of other initials. Fast forward a few years later the IBS was gastroparesis and the rashes were MCAS. Neurologically, they thought it was MS, but it wasn’t trouble with Balance gate and proprioceptor. Pain throughout my body has been as far back as I can remember. But having someone tell me this this far into the game now I’m just wondering is it really possible that no one picked it up until now or should I take this diagnosis with a grain of salt. I was referred to this specialist a pain management facility and this person has a special interest with EDS patients. Went over my complete medical history from childhood to now and had a family member take me and examine that person briefly who is very hyper flexible but I am not and that’s what always made me believe there could be no connection. Any opinions are appreciated. God bless you all.
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Hi, my name is UnremarkableMe. I've been diagnosed with EDS & Chiari Malformation, POTS, MCAS it has taken best part of 15 years, finally being diagnosed, only to face a different issue…. get treatment. Navigating this is nothing short of unbelievable but here I am looking for change
#MightyTogether #ehlers-DanlosSyndrome #ChiariMalformation
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