I'm talking annual check up type thing. By secondary or tertiary care rather than a gp (mine is fab but has neither the time nor knowledge to help me here). I deal with most of my health myself. My pain is mainly managed via activity pacing and physio. I use some painkillers as needed to ease the pain a little but have come to terms with the fact that my pain isn't going away and that we unfortunately have yet to invent a painkiller that works when taken daily without causing withdrawal effects I'm not willing to risk, damage to other parts of the body I'm not willing to risk or which become less effective over time when taken constantly. Mainly I use heat and rest.
I'm at peace with my condition deteriorating and I'd rather spend my time enjoying my life in a way that's adapted to be as sustainable symptom and health wise as possible than chasing a cure HOWEVER, I do feel that in order to do this, it's necessary for someone other than me to be motioning the progression of my symptoms occasionally and suggesting anything I can do to slow said progression/ anything I'm doing that may be worsening things (and isn't worth it! I can deal with my symptoms being a bit worse after I've had fun, dealing with a worsening of symptoms from a medical procedure that I gain no benefit from however is another matter entirely.)
I know that there's a move towards primary care and I'm happy to use primary care for most things but they simply don't have the time nor particular special interest in eds to be able to answer certain questions. Considering that over the last few years there's been a significant difference in my symptoms from one year to the next thanks to the severity of my eds/ its apparent need to progress despite me treating it very well (in my opinion lol) and doing 'all the right things' I don't feel it would be unreasonable for me to see a named consultant once a year for a review and to ask them if worsening/ new symptoms need investigating or if i need to make changes to lessen their impact. Then inbetween annual reviews, they could be a point of contact for my non specialist local providers just to check in with if they feel its necessary and check that they are working in a eds friendly direction.
I know that in some people, eds can be managed entirely in primary care and that progression comes to a halt or maybe a very slow crawl with physio and pacing, but I also know that I can't be the only one for which this is not the case! And for who, despite their best efforts, new systems keep jumping in to the mix and joining in and have them asking 'is this a eds thing? Is it OK to ignore? Or should I get this investigated/change what I'm doing'
Anyway if you are one of those people, who need a bit more specialist input, maybe directly or maybe to their local rheum/gp surgery. Are you getting it? If so can you please let me know from where! (If you aren't comfortable sharing on a online forum I get that, would you be willing to message me privately?). If so is it an ongoing thing? Or is your specialist/ team desperate to discharge you (I've seen several of the eds/hypermobility teams in London in the past but it's never been an ongoing thing. more, they diagnosed me and sent me on to the next step, the last of which was 'now you do it'. Am I doing something wrong and should be asking for appointments? Or is that the case for us all?)
I really really do see the benefit in the 'now you do it' part (honestly! I'm not just saying it) and I really do think the changes I've made to my life have slowed my progression/ made my life easier/ lessened damage but every now and again something regular in life comes up (say the dentist wants to extract a tooth) and I'm like oh, what's the eds impact here? And I ask the dentist (in this example) and they don't know, so I research (but I'm not sure) and I ask my gp (but he isn't sure and doesn't know where to ask) and I'm like... shouldn't I have a person who knows eds who I can ask? But my local rheum won't take me cause they don't know eds. The dentist (in this example) sends me to a local consultant but they don't know and they don't know who to ask. I try asking a eds team I've seen in the past but they are like 'you aren't our patient anymore'. I ask someone with eds/a charity but that's informal! It's not medical advice! And so in the end I have to decide based on my own research. Often I have to rationalise this to the dentist or whoever why we should do things differently and they are a bit ???? And don't want to listen because I'm not a dentist! I'm not a eds specialist! I'm just a person with a bad tooth! And eventually things go ahead my way or there's or somewhere in between and afterwards I'm like. This is going to happen again. And keep happening. I'm in my 20s and so many more regular health things that may be effected by eds are going to come up and I have no solution but to research myself and then decide. And honestly! I'm too close to this! Drs don't treat themselves, I don't want to be the only one who's considering eds each time. What if I'm unconscious and not avaliable to remind the surgeon I've got a connective tissue disorder and then give them a lesson on the implications of that and find out a alternative? What happens then? It might be fine or things might go wrong! What if I then have to live the rest of my life living with the aftereffect of a mistake, a oversight? I don't think I'm OK with that! It's one thing to live with symptoms caused by my eds, something I was born with, something inevitable that I've accepted as part of me and quite another to live with something that could have been prevented by a simple email, or me having been awake!
Anyway I'm not quite sure how to deal with that part. Everyday management I'm cool with. I don't want a magic solution to my pain or fatigue, I don't want to hand over the reigns of coordinating all the rubbish that comes with being chronically ill and let them fill in the forms as I sip a mimosa. (Though that sounds nice. Really nice. Even if just for a week.) But I would like someone I can email when a question about routine or emergency treatment arises (or my drs can! Imagine that! They could do the admin for their own request themselves!) and talk to once a year, who knows about eds and can offer me on record medical advice. Does anyone have that??? Is it a possibility? If so what do i ask for?? Who do i ask??? Or am I living in cloud cuckoo land even envisioning it?
So yeah, thoughts???