Russell silver syndrome misunderstood by gp

I never said that. Hypoglycaemia can be caused by not eating frequently enough - you have previously said that you sometimes eat one meal a day.


No, it doesn't necessarily mean you are eating right.

No idea but sometimes people just vomit. You said below that it was only a thing in year 5, don't see how that's relevant to what is happening now.

But you are saying you didn't know you had RSS until you were 17?

Whatever you medical issues and diagnoses are, you clearly need support with your mental health. If you are currently getting help from CAMHS, it is hardly outrageous for your GP to consider referring you to adult mental health service for ongoing support.

How would my bloods come back normal if you’re not eating? I’m not magic. Year 5 was my first blackout.

Okay should I reword that, doctors and nurses asked my mum to abort me because of my abnormally large head.

I went under camhs for a different reason, I was getting support from CAMHS until I forced them to discharge me in January 2019 (time wasting in my opinion, both for me and parents because they came with me. I didn’t want to participate in any therapy, they recommended cognitive behavioural therapy but I just said no, I know they are just going to diagnose me with bipolar or any other mental health condition and my therapist doesn’t respect islam and my religious beliefs, she puts you in denial, when I went because of headaches and self harm). If I was going to go under a mental health team again, and this time an adult one, I would have to go with my parents because I don’t travel on my own due to my health problems, so people will laugh and I will most likely be forced into doing something I don’t want to do and be forced to eat just to gain weight through feeding tubes. There is no point in me going under an adult mental health service if I don’t want to participate in any therapy and don’t want support, the adult mental health service is not just going to give me appointments to “talk” generally about my problems, when I insist I don’t want to participate in any psychological therapies like CAMHS did.

Okay then, will that get me off having to look for work, or even working in general? I have been declared LCW or limited capability for work so I don’t need to look for work but go on training courses and online courses. How on earth am I expected to go to The adult mental health service, and also make sure it doesn’t clash with job centre appointments? How do you expect me to go to 2 places at once, and travel all the way to north London from south london to simply talk about your problems and waste my time? (just because they can’t find anything physically wrong with you)

You wouldn't be the first person in the AMHS to be on disability. They will figure things out with you if you let them. Same as physical health would too. How often do you go JC? How long have you been classed as LCW?

You wouldn't be the first person in the AMHS to be on disability. They will figure things out with you if you let them. Same as physical health would too. How often do you go JC? How long have you been classed as LCW?

What do you mean put on disability?

I didn't say "put on" - although it wouldn't make much difference. I'm not saying you're faking if that's what you're implying. Being "on" disability just means you get disability related benefits like PIP, ESA or UC-LCW/UC-LCWRA. Quite a lot of people under mental health services are on PIP and/or ESA and/or UC.

And you can have an eating disorder along side a digestive disorder which can stem from a genetic iseue. As an example, I have Ehlers-Danlos Syndrome (genetic connective tissue disorder) and one of my comorbidities of EDS is gastroparesis which is a motility disorder of the stomach. However, I still have anorexia nervosa which is worsened by the gastroparesis (well they work all together to make my life hell). Actually it's quite common for untreated or undertreated digestive issues to cause eating related mental health issues. Or so my specialists have said to me anyway.

My point is it does happen, and I see it a lot amongst the EDS community and chronic illness community at large. People just don't wanna admit they also have mental health issues for some reason, be it full blown disorders or just smaller struggles that could use some assistance. I've always been very open with my specialists about my issues because they do make it difficult especially with how complex multi-system disorders are. I'd assume RSS is similar from what I've read. Just try working with people involved in your care and get accurate information about what is actually going on for you or you won't get very far in getting a better control on your symptoms.

I didn't say "put on" - although it wouldn't make much difference. I'm not saying you're faking if that's what you're implying. Being "on" disability just means you get disability related benefits like PIP, ESA or UC-LCW/UC-LCWRA. Quite a lot of people under mental health services are on PIP and/or ESA and/or UC.

And you can have an eating disorder along side a digestive disorder which can stem from a genetic iseue. As an example, I have Ehlers-Danlos Syndrome (genetic connective tissue disorder) and one of my comorbidities of EDS is gastroparesis which is a motility disorder of the stomach. However, I still have anorexia nervosa which is worsened by the gastroparesis (well they work all together to make my life hell). Actually it's quite common for untreated or undertreated digestive issues to cause eating related mental health issues. Or so my specialists have said to me anyway.

My point is it does happen, and I see it a lot amongst the EDS community and chronic illness community at large. People just don't wanna admit they also have mental health issues for some reason, be it full blown disorders or just smaller struggles that could use some assistance. I've always been very open with my specialists about my issues because they do make it difficult especially with how complex multi-system disorders are. I'd assume RSS is similar from what I've read. Just try working with people involved in your care and get accurate information about what is actually going on for you or you won't get very far in getting a better control on your symptoms.

My problem is I can’t be expected to be in 2 places at once, I can’t juggle going under a mental health team and going to the job centre. The distance from north London to south London is far too long and travel cost is an issue, money doesn’t grow on trees, so in this case it seems like going to the job centre is more important because otherwise I can get sanctioned.

Also I am supposed to do what my agreement is, So if I don’t go to my apprenticeship I will get sanctioned, the job centre aren’t going to be lenient over people being under mental health teams, we are adults now not children.

You can ask for the money back for travel costs to health related appointments iirc as you're on UC (look into this), you can even get transport door to door in some cases or you can ask your areas social services for people who can help you get from place to place. And if you go once on average every three months to the JC I think you can squeeze in MH appointments. And as I said if there is a clash with an appointment with the JC and the MH team, the MH team can always reschedule - I'm sure they will understand. You're putting up road blocks where there doesn't need to be any. What happens if you get a referral to a specialist for something related to your physical health that's on the other side of London? Are you not gonna go to that either?

Granted, you could just ignore things and let them get worse I guess.

I would rather relax at home than be forced to go out and waste my time outside on counselling for mental health when no amount of help actually helps me. My sister said for me to go under a mental health team so there isn’t much pressure for me to look for training right now and I can just tell the job centre that I have an eating disorder so I can’t look for training right now (don’t know if it works like that, don’t think it does because we are adults and expected to manage our physical and mental health issues). Physical health is different to mental health, physical health help actually gets you better, mental doesn’t for me, I find more peace reading the Quran and practising my religion than I do with counselling and therapy. If it was physical health maybe I would go, but even then, I probably wouldn’t because I spent the first 10 years of my life travelling to different hospitals in north London with my parents for various issues associated with RSS, and monitoring height and weight. There’s nothing you can do about RSS. It’s genetic and you can’t cure it, I don’t know why gps are going to make me run around again, I just have to manage my illness now and I am fine managing it. I will still take my sisters advice though, so there might be less pressure to look for work now. I have physical issues due to complications from RSS, and there’s nothing that can cure it so I have to manage my symptoms, I read up a lot about it online.

Just because there aren't cures doesn't mean you can manage associated issues. And I don't get what you're talking about. If you are unwell or disabled enough to not work or do things to help yourself get into work (i.e. doing work related activity) whilst being mindful of your limitations then you would've been put into the limited capability for work and work related activity group, this has nothing to do with "being an adult and expected to manage mental and physical health issues," it literally just means the government recognise you are limited to a more severe degree than someone just in the limited capability for work group (i.e. the group you are in and you have to go to the JC and go on training and whatever). The limited capability for work AND work related acticity group means you don't have to do training, or go to the JC, etc. and they don't expect you to. I am in the support group of ESA (the equivalent of UC would be limited capability for work and work related activity) and I am still expected to manage my health in both a mental and physical health sense as much as I can, be it with assistance or not (and for context I do require a lot of assistance for various reasons). You do realise that if you knowingly lie to the DWP then you're committing fraud. If you truly don't think you have an eating disorder, why lie? Just be honest with your struggles. Don't lie about it or they will avoid the actual issues that make it difficult for you to eat.

Honestly, I think you are in some weird sort of denial. I truly hope you figure out whatever your brain is doing which is preventing you from seeking and accessing the help you need.

Just because there aren't cures doesn't mean you can manage associated issues. And I don't get what you're talking about. If you are unwell or disabled enough to not work or do things to help yourself get into work (i.e. doing work related activity) whilst being mindful of your limitations then you would've been put into the limited capability for work and work related activity group, this has nothing to do with "being an adult and expected to manage mental and physical health issues," it literally just means the government recognise you are limited to a more severe degree than someone just in the limited capability for work group (i.e. the group you are in and you have to go to the JC and go on training and whatever). The limited capability for work AND work related acticity group means you don't have to do training, or go to the JC, etc. and they don't expect you to. I am in the support group of ESA (the equivalent of UC would be limited capability for work and work related activity) and I am still expected to manage my health in both a mental and physical health sense as much as I can, be it with assistance or not (and for context I do require a lot of assistance for various reasons). You do realise that if you knowingly lie to the DWP then you're committing fraud. If you truly don't think you have an eating disorder, why lie? Just be honest with your struggles. Don't lie about it or they will avoid the actual issues that make it difficult for you to eat.

Honestly, I think you are in some weird sort of denial. I truly hope you figure out whatever your brain is doing which is preventing you from seeking and accessing the help you need.

Just because there aren't cures doesn't mean you can manage associated issues. And I don't get what you're talking about. If you are unwell or disabled enough to not work or do things to help yourself get into work (i.e. doing work related activity) whilst being mindful of your limitations then you would've been put into the limited capability for work and work related activity group, this has nothing to do with "being an adult and expected to manage mental and physical health issues," it literally just means the government recognise you are limited to a more severe degree than someone just in the limited capability for work group (i.e. the group you are in and you have to go to the JC and go on training and whatever). The limited capability for work AND work related acticity group means you don't have to do training, or go to the JC, etc. and they don't expect you to. I am in the support group of ESA (the equivalent of UC would be limited capability for work and work related activity) and I am still expected to manage my health in both a mental and physical health sense as much as I can, be it with assistance or not (and for context I do require a lot of assistance for various reasons). You do realise that if you knowingly lie to the DWP then you're committing fraud. If you truly don't think you have an eating disorder, why lie? Just be honest with your struggles. Don't lie about it or they will avoid the actual issues that make it difficult for you to eat.

Honestly, I think you are in some weird sort of denial. I truly hope you figure out whatever your brain is doing which is preventing you from seeking and accessing the help you need.

Just because there aren't cures doesn't mean you can manage associated issues. And I don't get what you're talking about. If you are unwell or disabled enough to not work or do things to help yourself get into work (i.e. doing work related activity) whilst being mindful of your limitations then you would've been put into the limited capability for work and work related activity group, this has nothing to do with "being an adult and expected to manage mental and physical health issues," it literally just means the government recognise you are limited to a more severe degree than someone just in the limited capability for work group (i.e. the group you are in and you have to go to the JC and go on training and whatever). The limited capability for work AND work related acticity group means you don't have to do training, or go to the JC, etc. and they don't expect you to. I am in the support group of ESA (the equivalent of UC would be limited capability for work and work related activity) and I am still expected to manage my health in both a mental and physical health sense as much as I can, be it with assistance or not (and for context I do require a lot of assistance for various reasons). You do realise that if you knowingly lie to the DWP then you're committing fraud. If you truly don't think you have an eating disorder, why lie? Just be honest with your struggles. Don't lie about it or they will avoid the actual issues that make it difficult for you to eat.

Honestly, I think you are in some weird sort of denial. I truly hope you figure out whatever your brain is doing which is preventing you from seeking and accessing the help you need.

I don’t know why I was placed in the LCW group, I can’t travel on my own at 18 or bathe on my own and I don’t change my clothes or eat unless my mum reminds me to, and parents can’t take me to training so how do the job centre expect me to go on training? I’m not lying about my illnesses, if it turns out I have an eating disorder then I will tell the DWP that, if I do not then I obviously won’t, and maybe they might place me in the LCWRA group if I did have an eating disorder, I already told the job centre that I am having issues with my blood sugar levels and they kept dropping recently (though I feel fine now). I am on my period now and the last time I had my period it lasted longer than usual and then followed by feeling like I was constantly going to black out, so I feel scared for this time around. I’m not going to lie to the DWP about anything.

Unless you know me, you won’t know whether I have an eating disorder or not, family say I don’t because they know me and they know I eat, just slower than everyone else and I chew my food properly, I eat in restaurants and that and go out to eat sometimes. Maybe I just need to go under the mental health team just to prove to them and everyone else THAT I DONT HAVE A ****ING EATING DISORDER.

What are you trying to imply? That I am scared of food, well that’s just stupid and I am not scared of food.

Also, do you think I am that dumb or something? I know lying to the DWP will get you in trouble, and anything you do say to them has to be backed up with evidence anyway.

Do you think talking about eating is going to make me want to eat? Why don’t the GP just give me something so I can get taste buds (or to put it clearly a medicine that makes you want to eat, like something called tonic file that used to be available in the chemist, grandad used to eat it) so then I feel hungry often and then would eat more, since people keep bloody complaining about that, they don’t complain about anything else. If I was a fat person they would say eat less. My aunt has diabetes type 1 and has to be injected something else as well as insulin to take her tastebuds away a little bit because she’s very obese and keeps eating whatever she finds, like anything cold that’s supposed to be eaten hot like curry she would eat. I bet if I was fat no one would complain and instead tell me to stop eating and inject something in me like they are doing to my aunt.

Counselling or whatever for eating disorders don’t make you want to eat, how does talking about it make you want to eat? Just gives you more of a headache. Same with any mental therapy, how will talking about self harm stop me self harming for example? How is forcing food down my throat through feeding tubes (if it came down to it) going to make me want to eat? They are forcing it down. Also I read an in depth account about my illness and it said if we can’t sustain orally then yeah we eat through feeding tubes, but it’s important that an RSS child is not OVERFED but not UNDERWEIGHT either, and that’s what they would do to me if they fed me with feeding tubes, it’s easy to overfeed if you feed through feeding tubes, and I can Sustain myself orally so there’s no reason why they should do this to me.

Lol, I made my observations about how I think you may be struggling with an eating disorder alongside your gastrointestinal issues from comments you've made in other threads. I do not know you in person, you are correct in that, but I am aware of who you are on here even if you're on anonymous. I am not saying that what I have observed is 100% accurate, merely an educated guess based on what I have read. Do not misunderstand me. And you don't have to get hostile.

People don't necessarily go into LCWRA group just because they have an eating disorder diagnosis. It's a lot more complicated than that.



Okay? Well good for you. And no, I am not implying anything. I do think we get our wires crossed though for various reasons.



Okay. And you mean appetite stimulant I assume.



Therapy helps you understand why you do what you do and how to help yourself not engage in maladaptive behaviour. They don't force you to do or not do things. You are only forced or prevented from doing things when the danger to yourself or others is thought to be too high to have you out in the community and they'd either informally or formally admit you to a psychiatric ward.

And yes? It's important that any human is not over or underfed, doesn't just apply to RSS patients. And no, providing you work with a dietician you would be fine getting adequate nutrition should you ever need to go on tube feeds on a temporary or more permanent basis. Sure there may be complications but you're generally monitored closely if you're on some sort of nutrition assistance thing like a feeding tube. Although that would still not be against your will (i.e. not forced) providing you're of sound mind and not critically ill. They don't just tube people for any old reason, it's a type of last ditch effort sort of thing save for things like TPN. They really try to work with people to avoid this out come.

Anyway, clearly you feel attacked by me because of some reason even though I merely want to help you see that you can get help and improve your quality of life in exchange for some uncomfortable talks and effort. Good luck and stay safe. Feel free to drop me a message if you need or want to talk. I get how frustrating it is living with a multisystemic genetic disorder that touches every aspect of your health and life. It's not fun and it is isolating. Take care.

I got told by a different gp that called me today saying I am low in vitamin D, while the other gp that I saw told me I have an eating problem (when they don’t even know me) and everything including vitamin D is fine and I am mental 😂😂 everything is all in my head 😂😂. Maybe I had hypoglycaemic episodes because I am low in sugar and vitamin D and being low in vitamin D made me cold and more tired than usual. I don’t know what to believe anymore. My gp in general is crap I think, the other gp wrote down on the system that I have an eating problem and they will get back to me about AMHS apparently but the gp that called me today didn’t say anything else about that. I got given supplements for vitamin D and I have to take it for 3 months so I am assuming it was very low. This is evidence that something was wrong this whole time.