I would love to share my story, it is so similar to this strong, empowered woman's story. Thank you for amplifying our experiences, if we "boost the signal" by getting more eyes and ears on our health issues, we increase our chances of attracting more funding for research.
Big hugs. We mirror in our story, as most of us with EDS, MCAS and POTS. I had a fever of 102 for 4 months and ran every test in the book. Now, I know long-term fevers are indeed a thing. It’s exhausting and utterly debilitating. By hearing the stories of others who share my conditions helps me see myself outside of my eyes, and assists in self-compassion. And you are so right, stability is so important along with medication maintenance.
It may not be life threatening, but it is life stopping. My18year old has been on the journey to a diagnosis for 10 years. Pots, allergies, rashes, anxiety etc and it is a fight every step of the way to be taken seriously.
So very sorry to hear your experience with certain doctors on NHS. Unfortunately this is common in people with EDS. I have had similar experiences. My identical twin sister was diagnosed with hEDS in 2014. But my doctors didn't believe me. The first rheumatologist i went to see said "...isnt it handy that your twin sister has been diagnosed with the only form of EDS that has no genetic markers". She went on to state that i wasn't even hypermobile. So i printed out my sister's two diagnosis letters and took them to the hypermobility clinic in London where i was diagnosed on the same day with hEDS. I also have low BP, POTS, many allergies and have chronic uticaria which physio feels is likely MCAS.
Your story took me back to when my hip used to dislocate when walking along the street. Horrifying - and then it'd go back in and I could walk on like nothing had happened. Later the same thing happened with my shoulder and of course no health professionals believed me. Recently diagnosis myself with MCAS, POTS and hEDS and then had it confirmed by a GP who knows. Just starting that year of targeted testing and I am 62 and the hip dislocations started 25 years ago. Long journey but it finally feels like it has started.
I’ve just recently started reacting to foods all sorts particularly gluten alcohol coffee tomato soy. Dr has no idea about allergies or even histamine intolerance… thankfully I’ve found a naturopath who’s having me tested for sibo/leaky gut - estrogen dominance looking to treat the root cause not just symptoms.
This sounds very similar to some of my symptoms! I’m at a point where I can’t eat anything without reacting, my heart rate shoots up as soon as I stand up with dizziness, rashes all over, fatigue, migraines etc. Regular doctors just wanted to put me on allergy shots and prednisone and Zyrtec twice a day but I knew there was a root cause. l just did some functional medicine testing like the mycotoxin test and I found out that I have high levels of toxic mold in my body.
Thank u for sharing ur story. I sympathise so much as I’m unable to eat except for fish chicken & mash.I’ve been so poorly but am so sick of trying to get help frm the medical lot.Already fought to get help for hip dysplasia for 15yrs then gallbladder hell for 4yrs everytime being fobbed off. Now I’m so poorly since coming off mirtazapine 7 months ago but while I was on it was poorly too.But I’m searching trying to get help with mcas as I have all the symptoms.Don’t know who or where to go to but I’m bedbound and no one’s believing or helping me. I just exist.Wish I felt strong enough to fight to get help but I’ve already had to fight for the last 20yrs of chronic ill health. I’m at such a loss what to do x
Unbelievable! I can’t believe what you have been through. You should write an open letter to every medical professional that you have seen. It may help another person. I get so angry about professional assuming mental health! I have EDS and I was diagnosed after my son was when I was 30 years old. I was very much dismissed with his symptoms. I was blessed that I was not very symptomatic at that time of diagnosis, so I haven’t struggled to get a diagnosis. In regards treatment I tend to just do my research and not leave the GP room. Firmness is the only way. Unless you go private. I have just been diagnosed with with POTS and I’ve just had my second mast cell flare up. I’m currently floored and have had about six appointments with the GP. I have another one today and I’m not leaving until I am referred to a immunologist . Thankfully my last cardiologist appointment letter referred to flushing and the benefit of on going antihistamines. So this evidence will be helpful. Currently the antihistamine are doing nothing to help symptoms.I’m swelled all over, itching like crazy, debilitated, low blood pressure (much more than usual) stomach pain, bloating and I’m spotting blood. I’ve had these symptoms for over three weeks now. It really frustrating because I was doing so well and I feel like this has set me back so much. Your hope message is well received. You’re hormone reaction is interesting. Any advice for identifying triggers. It seems to be remove everything and start introducing. For your awareness, I developed fibromyalgia after my third child and that really changed by life. I was 36. There is little advice about the impact of pregnancy on our bodies. Just something to consider. Also my three boys all have EDS or Hypermobility syndrome. They all have daily physio and each have different symptoms which we manage. But it’s mainly been private care (when I was working) which highly educated me to battle for them on the NHS when they have new symptoms. Managing is truly about balance hope and mindset. I’m currently on benefits and want more than a anything in the world to have a job. Being a mum, carer and battling chronic health has taken 8 years of my working life. Obv love being a mum and carer but I need something else now for my own sanity. But I just don’t know how I will balance a Job and health, also financially. I don’t want to set myself up for failure. I always aim a bit to high in regards my health and end up on my bum. Still haven’t mastered pacing. I’m starting a volunteering role to test out my ability. So any advice on working with chronic health would be greatly appreciated 😊 You’ve done so well
Hi Sophie Thanks for your amazing story - everyone is different but we all recognise some of them in ourselves. Do you have any chronic pain/fatigue issues? Could you list what medications you need to take? And, would be fascinated to know which business you have created? Thx, Jed.
Im a complete wreck with no family support. ..froends have dosapeared and i have lost both my parents in last 5 years ....how do i get out of this ....i dont know whats phycological ...whats mental ...whats physical ....whats grief ..,.i look fine but struggle with sleep food energy relationships .. ..absolute hell
You need JESUS CHRIST. Believe in him, and He will safe you. Call on his wonderful name and ask Him for help. A sincere prayer from the heart will not go unanswered. GOD bless you!
Omg you have been thru loads it's an absolute nightmare!! Sorry to hear this, as you're so young.. I am so glad you have got a handle on this... please tell me where I can I get a referal I am suffering so bad ...
I have hEDS, based in UK. NHS is useless for those of us with Ehlers-Danlos Syndromes and dealing with MCAS, POTS, etc. Private doctors in these areas in the UK are for MCAS, Dr Peers. For POTS Dr Sanjay Gupta, Cardiologist York. He has a very interesting and informative YT Chanel.
Sue. I cry right along with you lostmy husband this year unexpectedly I don't know what God want from me either i miss him every day my sweet husband of 17 years
I would love to share my story, it is so similar to this strong, empowered woman's story. Thank you for amplifying our experiences, if we "boost the signal" by getting more eyes and ears on our health issues, we increase our chances of attracting more funding for research.
Please do send us an email at info@mastcellaction.org as we would love to help you share your story!
Big hugs. We mirror in our story, as most of us with EDS, MCAS and POTS. I had a fever of 102 for 4 months and ran every test in the book. Now, I know long-term fevers are indeed a thing. It’s exhausting and utterly debilitating. By hearing the stories of others who share my conditions helps me see myself outside of my eyes, and assists in self-compassion. And you are so right, stability is so important along with medication maintenance.
Thank you SO much for sharing your story, it was incredibly encouraging to me.
I’m acc sobbing listening to this. I’m 19 and going through similar, undiagnosed. It’s so difficult.
It may not be life threatening, but it is life stopping. My18year old has been on the journey to a diagnosis for 10 years. Pots, allergies, rashes, anxiety etc and it is a fight every step of the way to be taken seriously.
So very sorry to hear your experience with certain doctors on NHS. Unfortunately this is common in people with EDS. I have had similar experiences. My identical twin sister was diagnosed with hEDS in 2014. But my doctors didn't believe me. The first rheumatologist i went to see said "...isnt it handy that your twin sister has been diagnosed with the only form of EDS that has no genetic markers". She went on to state that i wasn't even hypermobile. So i printed out my sister's two diagnosis letters and took them to the hypermobility clinic in London where i was diagnosed on the same day with hEDS. I also have low BP, POTS, many allergies and have chronic uticaria which physio feels is likely MCAS.
What’s your diet? Like do you eat gluten dairy sugar?
Your story took me back to when my hip used to dislocate when walking along the street. Horrifying - and then it'd go back in and I could walk on like nothing had happened. Later the same thing happened with my shoulder and of course no health professionals believed me. Recently diagnosis myself with MCAS, POTS and hEDS and then had it confirmed by a GP who knows. Just starting that year of targeted testing and I am 62 and the hip dislocations started 25 years ago. Long journey but it finally feels like it has started.
I’ve just recently started reacting to foods all sorts particularly gluten alcohol coffee tomato soy. Dr has no idea about allergies or even histamine intolerance… thankfully I’ve found a naturopath who’s having me tested for sibo/leaky gut - estrogen dominance looking to treat the root cause not just symptoms.
This sounds very similar to some of my symptoms! I’m at a point where I can’t eat anything without reacting, my heart rate shoots up as soon as I stand up with dizziness, rashes all over, fatigue, migraines etc. Regular doctors just wanted to put me on allergy shots and prednisone and Zyrtec twice a day but I knew there was a root cause. l just did some functional medicine testing like the mycotoxin test and I found out that I have high levels of toxic mold in my body.
How are you healing? Did you leave the mold ?
Have you looked into dysautonomia? It’s a whole web of symptoms (including these) throughout the body and multiple diagnoses.
Thank u for sharing ur story. I sympathise so much as I’m unable to eat except for fish chicken & mash.I’ve been so poorly but am so sick of trying to get help frm the medical lot.Already fought to get help for hip dysplasia for 15yrs then gallbladder hell for 4yrs everytime being fobbed off. Now I’m so poorly since coming off mirtazapine 7 months ago but while I was on it was poorly too.But I’m searching trying to get help with mcas as I have all the symptoms.Don’t know who or where to go to but I’m bedbound and no one’s believing or helping me. I just exist.Wish I felt strong enough to fight to get help but I’ve already had to fight for the last 20yrs of chronic ill health. I’m at such a loss what to do x
Unbelievable! I can’t believe what you have been through. You should write an open letter to every medical professional that you have seen. It may help another person. I get so angry about professional assuming mental health! I have EDS and I was diagnosed after my son was when I was 30 years old. I was very much dismissed with his symptoms. I was blessed that I was not very symptomatic at that time of diagnosis, so I haven’t struggled to get a diagnosis. In regards treatment I tend to just do my research and not leave the GP room. Firmness is the only way. Unless you go private. I have just been diagnosed with with POTS and I’ve just had my second mast cell flare up. I’m currently floored and have had about six appointments with the GP. I have another one today and I’m not leaving until I am referred to a immunologist . Thankfully my last cardiologist appointment letter referred to flushing and the benefit of on going antihistamines. So this evidence will be helpful. Currently the antihistamine are doing nothing to help symptoms.I’m swelled all over, itching like crazy, debilitated, low blood pressure (much more than usual) stomach pain, bloating and I’m spotting blood. I’ve had these symptoms for over three weeks now. It really frustrating because I was doing so well and I feel like this has set me back so much. Your hope message is well received. You’re hormone reaction is interesting. Any advice for identifying triggers. It seems to be remove everything and start introducing. For your awareness, I developed fibromyalgia after my third child and that really changed by life. I was 36. There is little advice about the impact of pregnancy on our bodies. Just something to consider. Also my three boys all have EDS or Hypermobility syndrome. They all have daily physio and each have different symptoms which we manage. But it’s mainly been private care (when I was working) which highly educated me to battle for them on the NHS when they have new symptoms. Managing is truly about balance hope and mindset. I’m currently on benefits and want more than a anything in the world to have a job. Being a mum, carer and battling chronic health has taken 8 years of my working life. Obv love being a mum and carer but I need something else now for my own sanity. But I just don’t know how I will balance a
Job and health, also financially. I don’t want to set myself up for failure. I always aim a bit to high in regards my health and end up on my bum. Still haven’t mastered pacing. I’m starting a volunteering role to test out my ability. So any advice on working with chronic health would be greatly appreciated 😊
You’ve done so well
Hi Sophie Thanks for your amazing story - everyone is different but we all recognise some of them in ourselves. Do you have any chronic pain/fatigue issues? Could you list what medications you need to take? And, would be fascinated to know which business you have created? Thx, Jed.
Thanks for sharing your story.
I've had a very, very similar experience with medical professionals. The favourite 'diagnosis' was anxiety.
Im a complete wreck with no family support. ..froends have dosapeared and i have lost both my parents in last 5 years ....how do i get out of this ....i dont know whats phycological ...whats mental ...whats physical ....whats grief ..,.i look fine but struggle with sleep food energy relationships .. ..absolute hell
You need JESUS CHRIST.
Believe in him, and He will safe you.
Call on his wonderful name and ask Him for help.
A sincere prayer from the heart will not go unanswered.
GOD bless you!
Go and see a good nutritionist/naturopath/functional medicine practitioner. They will help you.
My brother faught mcas for over twenty years. But he lost. He died on the 26 september 2024 at the age of 57
I am so sorry for your loss.
Omg you have been thru loads it's an absolute nightmare!! Sorry to hear this, as you're so young.. I am so glad you have got a handle on this... please tell me where I can I get a referal I am suffering so bad ...
Have you found help yet
Did someone with this condition also has terible anxiety and intrusive thoughts?😊
What tablets did they give you ? What histamine tablets ?
Who helped with mcas ? She should give the info. Idk why people dont ever tell who helped them on these videos ...ugh
I have hEDS, based in UK. NHS is useless for those of us with Ehlers-Danlos Syndromes and dealing with MCAS, POTS, etc. Private doctors in these areas in the UK are for MCAS, Dr Peers. For POTS Dr Sanjay Gupta, Cardiologist York. He has a very interesting and informative YT Chanel.
Allergist and hematologist
Rheumatology & gastro are two that i know of
Sue. I cry right along with you lostmy husband this year unexpectedly I don't know what God want from me either i miss him every day my sweet husband of 17 years
So relatable
What tablets did they give you ?
Thank you ❤ enjoy your teck xx
What is mcas?
Mass Cell Activation Syndrome
I need to find a practitioner
Jones Donna Anderson David Williams Nancy
Linked to.migraune disorder
What tablets did they give you ? What histamine tablets ?