"Rare condition and left feeling alone"

I've been ill my whole life. I got diagnosed with fibromyalgia in 2019. I've always been told that I just have anxiety and depression and stress related symptoms. I also got told I had an unstable personality disorder which I've been fighting against. In 2012 I had a haemorrhoidectomy which was not a pleasant procedure. I also need to add I have a heart condition known as Romano ward syndrome. After having the procedure in 2012 I was given diazepam the night before the procedure. I took the diazepam but I didn't feel like it worked and I didn't really know what to expect. I presumed it would make me feel drowsy but it didn't. I raised this with staff and I feel like they were making out that I had previously abused this medication because I wasn't having the described reaction.

To put into context I also have a condition called Ehlers-danlos syndrome this condition is weakness in my joints and stomach issues plus I also have been told by a clinical genetics that I ate her effects how medication works in my body. My body rejects medication and they don't work as they would do in somebody else. I'm in my 40s now and I've only been diagnosed with Ehlers-danlos syndrome whereas most people find out they have this in their 30s.

Another side effect of my condition is that I often experience loss of bladder control an numbness in my legs and sometimes leading to be paralysed on one side from my waist down or from my neck down. It's very scary when this happens. My son also has Ehlers-danlos syndrome and after he had COVID was prescribed morphine for several throat infections which again was not working for him, this really affect his mental health. He also has a diagnosis of ADHD and after a moment of madness hurt his hand and required surgery of 11 hours to try and reattach his hand due to not getting the care that he needed.

I've had to fight for PIP and battle with the advisors about getting the right support, I've had to lose my job. I feel isolated I'm too if he my son is too afraid to leave his mom he thinks I'm going to die. He's lost all his friends he's not able to work.

Another condition that's linked to Ehlers-danlos syndrome is called POTS might be under the cardiologist 'cause I also have a heart condition. I tried to get the cardiologist to test my son for parts as it's linked as he is symptomatic the cardiologist told me that there's no point testing for parts because we don't treat this within NHS Tayside. They keep prescribing me beta blockers and I tell them I can't take the medication but the doctor says I need them for my heart condition, I've stopped taking them again and I was told to just eat a banana, this led me to feel suicidal.

Having such a rare condition has been awful, the GP have also not been helpful with supporting me with my condition. There was one GP that went above and beyond but has now since retired. I do have contact with one GP calls me once a week but I feel like I'm seeing as problematic.

I got referred to the pain clinic at Perth royal Infirmary for a face to face appointment I'm in a lot of pain and I've not been able to sleep in my own bed for nearly two years due to the pain. The pain clinic suggested I buy a TENs machine. I had to borrow the money to be able to afford this and when I got the 10s machine it clearly stated not to use if you had a heart condition feel. I felt this was an insult from the Doctor who advised me to buy this TENs machine knowing that it wouldn't suit me and it costs me money. I was asked to be re referred and it took over a year and all I got was life management courses. I feel like this was dangerous advice.

This year I've ended up having two biopsies and have something called mast cell activation syndrome which is linked to the POTs this is what makes me have the intolerance to drugs and I'm sensitive to chemicals I also have a heightened sense of smell I shouldn't be given antidepressants. I can't have some anaesthesia as it doesn't work and could wake up on the operating table and antibiotics don't work for me. I don't have this written in my medical records and worry if I end up having an accident that the health professionals won't know that I can't be given antibiotics or they don't work for me.

I got referred to the mental health team at NHS Tayside based at Arbroath I've been involved on and off with the mental health service since I was 14 and again I feel like I'm seen as problematic as they try to make me take, antidepressants which I keep telling them I cannot take, my CPN told me I had ADHD and my doctor told me that I don't have ADHD, I'm still trying to fight against this diagnosis. My condition is also linked with high rates of suicide because it's so difficult to treat and all they do is offer me medication that I cannot take.

I've written to the health board and my MSP and now they're saying it's long COVID. My MSP wrote to the health board on my behalf to try to get me some support I was told in a letter from my MSP that my heart condition is significant and also is known as sudden death syndrome I've I should have been told this by my doctor and not had to read it in a letter from the MSP I feel like I've had no help from the pain clinic or mental health support. I'm petrified to take the medication and nobody is checking in on me even though I'm classed as having a significant heart condition I can't remember the last time I saw my cardiologist it was over a year ago.

I do have one medical professional my dietitian professor Dore who has helped me and gone above and beyond with the mast cell syndrome this is what's had the greatest impact on my life it's like living in fight or flight mode. I've also had six rejections to the neurology department at Ninewells hospital and they've done extensive investigations I've been trying to get referred out of area but the doctor in the GP say they don't know how to do this I feel like it's a post code lottery I've lost all my family.

I'm very grateful to my dermatologist on my dietitian who I feel are the only stuff you've tried to help me and finally the mental health social care work under Angus health and social care partnership have great services such as social prescribers but they don't have enough staff they're always off sick or on annual leave I like some of the things they offer but they don't have enough stuff to help me with my health care that I need.