Hello from Devon..

[yosafbridge]

I'm never sure what to say in introductions. I've joined here because I'm struggling to adapt to my new status as 'someone with a lifelong,painful,uncureable condition' otherwise known to professionals as 'a write-off'. I'm struggling with the realisation that what I thought would be the end point of my long fight for help and the start of a path to recovery,ie an accurate diagnosis,is in reality just a different beginning point for the same fight,because the accurate diagnosis (EDS/HMS) is one most people have never heard of and that most professionals are ignorant about. And I'm *really* struggling with the knowledge and experience I've gained over the past two years that has completely destroyed my trust in the medical profession,medical science and 'experts' of all flavours because it makes me feel very alone with this. My social confidence has also taken a battering and trying to communicate and connect with people from a position of hiding under the sofa is proving tricky,which isnt help with the aloneness thing. So I'm hoping that waving hello here is a good first step to changing that and maybe making some new friends..

Coz I just sound like a *barrel* of fun from that description dont I

[madmum]

Welcome to the forum. I felt the same when I was finally diagnosed. Yes it proves I am not a nutter but no I have not got any further help myself. I understand your emotions after years of fighting the nhs for my son and myself. I have been labelled as mentally ill and so do not receive treatment locally. I have had no follow up since my diagnosis. I am trying to cope with my own issues and those of my son which is not easy. You are not alone and among friends here.

[Looby62]

Hi yosafbridge,

I am newly diagnosed and also new to the forum. I fully understand where you are coming from as I too stupidly thought things would get better after being diagnosed and even looked forward to getting set on the road to treatment.

I now know better and get tired and frustrated with uncaring and ill informed medical staff. I realise it is unrealistic to expect everyone to have up to date and intimate knowledge of connective tissue disorders and all that they encompass but I am shocked at the seemingly total lack of interest that almost every medical professional that my daughters and I have come across.

It seems to me that as there is no cure, which by the way I am sick of them telling me!, we are just taking up valuable time that could be spent on someone who might actually get better.

From visiting sites and forums such as this I am trying to educate myself about HMS/EDS as much as I can so I can pass information on to my GP and gain the confidence to ask for what I feel will benefit my family.

I know there are good dr's out there who are willing to expand their knowledge and find out what is best for their patients, I just wish there were more of them, but I suppose that is something we can all work on by sharing information.

You have taken the first step by peeping out over the top of that sofa so take heart and know you are not alone, there are unfortunately a lot of us doing the same thing.

Oh and madmum are you the official newbie greeter? If not you should be, you do it so well

[yosafbridge]

Thankyou madmum. I've been fighting since my teens and am now nearly 40 and exhausted. My body finally crumbled two years ago and the extra physical disability has made coping so much harder,but its the pain and the idea that I'm supposed to just put up with all of this and anything else that comes along now thats doing my head in. I'm particuarly miserable and feeling sorry for myself at the mo because I've had excruciating and intrusive ear pain for the last 18 days,nothings shifting it and I'm feeling really ill. This should matter,the cause should matter and relieving the pain should matter but my drs not interested in any aspect of my health because I have a 'permanent' condition and so apparently dont warrant basic primary care anymore. And the worst part of that is that I know its not 'just me' in this boat. There is nothing unique about my story or my dealings with 'professionals',my experiences arent even unique to people with 'rare' conditions,this country is full of people suffering with every problem imaginable and being let down by the very people and services we're told to turn to for help. If I made a post about my ear symptoms here,or on any internet board,the advice would be 'go to a doctor'/ 'go to the hospital'/'insist on being examined/treated' etc but when in reality those things dont work where are you supposed to turn?

I realised afterwards that my intro didnt actually say much about me,I'm 39,mother to a fantastic young man whos halfway across the country at uni,I'm currently living alone in the middle of nowhere,see a support worker once a week that I couldnt manage without and I'm usually fairly proactive and 'strong' but in the grip of 'woe is me' just now because unremitting agony leaves no energy for anything else. I have a long standing diagnosis of Developmental PTSD so I already knew a lot about Dysautonomia,sensory processing dysfunction and the effects of physiological and emotional stress on the body and brain,and I also now know way more than I ever wanted to about connective tissue disorders. What I dont yet know is how to adjust to this new reality I'm in or how to persuade other people that I matter,that my quality of life matters and that I'm worth putting some time and effort into helping,and that seems to be a common battle that most other people arent winning either which is discouraging But maybe I can pick up enough tips here to keep going in the meantime so I'm off to read more threads.

[nemonie]

Hiya,

Welcome to the boards. Sending you gentle hugs. Have a look on here at the thread about Stanmore (use the search button, up in the corner). The go to the website for RHOH stanmore and see if you can find their rehabilitation bit (it's all about physio and OT and coming to terms with your long term condition - they are experts in EDS/HMS and are fab).

Then go to your GP and insist that you be referred to the physio rehab programme at The Royal National Orthopaedic Hospital at Stanmore - as it will allow you to manage your condition better in the long run and you will have to bug him/her less. PM me if you want more details, or ring the HMSA helpline.

I think we may have a local HMSA group in Devon, if you have a look on the main HMSA website there is a list of the local groups and the contact details of the group leaders.

Nemonie

P.S. Make a complaint to your practice manager if your GP dosn't treat your ear infection. Having a long term health condition dosn't preclude you from having or getting any other infections or problems and it is against both their moral code and legal guidelines to refuse to treat you. Send them a letter if it's easier for you, or do it over the phone. But please look after your health. If you can take a friend or your support worker in with your next time you go, as back up too.

[yosafbridge]

Hi Looby62,I'm sorry you and your daughter are going through this too

It seems to me that as there is no cure, which by the way I am sick of them telling me!, we are just taking up valuable time that could be spent on someone who might actually get better.

I'm with you on this. But I dont understand why they do it. With EDS/HMS 'No cure' does not mean the same thing as 'condemned to suffer with no chance of symptom improvement'. I get that nothing can cure the underlying genetic mutation and that this is something I will have for life but the quality of that life isnt dependant on the EDS its dependant on how well thats managed which is exactly why I'm asking for help to manage it better. That isnt denial of the fact theres no 'cure'


Hi Nemonie,
Thanks for the suggestions.I've had a look at the Stanmore threads,and some blogs of peoples experiences of their three weeks there,and its way beyond my abilites to cope with their residential programme unfortunately. Its also the other side of the country from me so just not feasible for outpatients appointments. I know some people will travel as far as it takes to find a chance of help but practically and physically I cant,unless someone has a helicopter I could borrow...

Having a long term health condition dosn't preclude you from having or getting any other infections or problems

I know,it seems obvious doesnt it,and if someones long term health condition isnt being well managed its even more likely the exhausted,rundown person will get 'normal' infections and health problems on top. Most of which I'd never bother going to the gp about,just like I dont bother going to her for the majority of EDS related things that would have a 'normal' person calling ambulances for. So when I do go to her it means the problem is ultra unmanageble and I need her help the way 'normal' patients need her help,as a gp whos supposed to know stuff and give a monkeys about her patients suffering. Just dont seem to be able to get that through to her though.

Make a complaint

Unfortunately (again,I know,its boring) I'm now in the position,that I suspect others here will recognise,of being seen as 'someone who makes complaints' rather than someone who has legitimate grounds and justified reasons for making complaints. The more you try to stand up for and assert your rights the more youre seen as a 'troublemaker' and ignored. And none of my complaints have ever helped or changed anything,however I've worded them and whatever channels I've gone through,so I'm left feeling utterly powerless and that isnt where I need to be to cope with my life at the mo so I'm trying to stay away from that route for a while. Which is very hard when I want to be complaining from the rooftops,but its picking the battles isnt it. I am planning to change surgerys but I need to find a gp who will work with me,from the limited choice there is in the back of beyond,and that needs energy and effort thats all being used up coping with this extra pain. Gah.

My support workers back tomorrow so I'm going back to the gp to try again. My ears bleeding now so maybe that'll get her attention Its got mine but I'm deliberately not googling coz scaring myself isnt going to help and theres nothing I can do till tomorrow anyway She (support worker) always comes in to appointments with me,often she goes to my gp appointments without me coz we've found me not being there seems to work better all round.. She spends a lot of her time trying to get other professionals to understand that I'm a human being despite my diagnoses and visible disablities but it is like talking to brick walls when theyve already made up their minds that I'm an untreatable alien.

Thanks everyone for your welcomes. I do occasionally do things other than moan,honest..

[madmum]

I so understand how you are feeling. I have had to complain so many times about the hospital I am looked at as a trouble maker and mentally ill. Both my son and I cannot get treatment locally. One of the gp doctors was a bit narky until I comfronted him and told him I know what he has written,he is now much better. I have been in awful pain since last weekend with neck and shoulder problems giving me awful headaches. I cannot get an appointment to see the good doctor until June 8th. I feel many doctors do give up on you when you have a chronic problem. My son is 12 and getting pain relief for him has been a nightmare,paracetamol does not help him at all and to have a crying child at 3am and not being able to help is frustrating. I also have ptsd due to domestic violence so get looked on as being different. I get no help from the state and no help with the emotional side of dealing with life or my hms. The only one trying to help is my chiropractor who is now trying hypnotherapy. Wish I was there to be a comforting shoulder. Sending gentle hugs and letting you know you do matter and you are not alone.

[anna]

Stupid idea time - this may work or it may not. When I moved GPs I was terrified that I'd get the brush off. I went in and said' Please don't change my meds, it's taken my previous GP and I AGES to get a reasonable balance' And this was accepted, I think because I was sort of praising the previous GP (who by the way had never heard of EDS and had to confirm it was a real condition on his NHS computer.!!! Now another thing that can work is 'Please could I try X? Or please can I have your permission to try Y? I think if you try to empower the GP sometimes they are more likely to listen. Just a couple of ideas, hope they might spark a brilliant one from someone else!!

[BendyBoff]

Hi,

Just wanted to say welcome to the boards. I think we've all had loads of problems getting medical professionals to help us - my latest battle was with a podiatrist on Friday - so we all understand how that makes you feel.

The boards really help to make you feel less alone. As Nemonie says we have 2 local support groups in Devon - one in Plymouth and one in Exeter. All the details are on the main website. I also happen to be the Exeter group leader so PM me if you would like more information.

Take care

xxx