Looking for Advice & Support

[ChronicCrafter]

Hello! 

I’m ChronicCrafter, this is my first discussion on here. I’m really hoping that I can find some support here, I don’t really have anyone else to talk to that would understand. 

I was diagnosed with FND a bit over a year ago after a long battle with various other conditions. I have had many surgeries for ovarian cysts and lesions which has left me with debilitating chronic pain, and I’ve also recently been diagnosed with ASD. All these things have made it impossible for me to work and have a normal 21 year old life. 

Unfortunately, I’ve been noticing a lot of other symptoms that don’t seem to fit any of the conditions I’ve already been diagnosed with. These are things that have been trouble for a long time, but the FND and chronic pain have made them more difficult and noticeable. These symptoms worry me, they feel like they could be something more serious. I’ve told doctors about them in the past, but they’ve never been taken very seriously. Even less so now that I have other diagnoses. 

I don’t want to be seen as a hypochondriac. How should I approach this? Should I talk to my GP or just let them keep treating the other conditions and hope that they go away? 

[tabey]

Dear ChroniccrafterFirst off welcome to the club 😀 . Im sorry you have to put up with FND at 21 that really sucks i was 36 when it hit me even thoe i was 29 when things started to go wrong. I hear what your saying Doctors are impossible to talk too and if they feel your telling them the issue they just shut down and close off and sometimes just label you and do not take anything you said on broad.

I have had to put up with this myself and it made me put up and shut up with the lack of care and pain but i can not longer sit back and accept this so instead of going to see them i have written them a letter followed by a Fnd sheet written by FND HOPE which is aimed for doctors and is reserch and fact based so they really can not agrue this so i see how this plans out.

All i can say is do what you can do when you can do it do not plan things to far in advance and never 100% commit to anything this way the blow does not hit as hard if you cant make it.

If you need to uae a stick or a chair to get around in use it if people look let them your doing it for you and you alone not them

And when you need to rest do so do not fight your body

Hope any of this is of help chat away any time thats what we are here for.

Tabe

[ChronicCrafter in reply to tabey]

Hi Tabe,

Thank you so much for your kind reply and great advice! Chronic illness is a pain to deal with (literally), and it feels really nice to know that there are people who understand. Even if doctors don’t 😅

I really love the idea of writing things down for doctors, especially when I have trouble getting the words out. 

I have been using a stick for a while, and have recently upgraded to a walker on bad days. It really does help for stability. The funniest part is the dirty looks I get from judgy old ladies in the shopping centre!

I’ve been working with my physiotherapist on better pacing. At the moment it’s 10 minutes of standing up and then a 10 hour break. 

Thank you again for the chat, and I really look forward to talking more 🥰

[8756]

I live in Australia and the trouble is specialists within the same health areas discuss their patients' issues and therefore once a diagnosis is given to you it sticks. I am currently going through this and have been given a referral to another Neurologist out of my area and I will not be giving the new Doc any information. I want him to start from scratch and going out of area is the only way to do. With video appointments the distance thing is no longer a problem for initial consultations.

Good Luck

[ChronicCrafter in reply to 8756]

I live in Australia too! I know exactly what you mean about diagnoses just sticking. Once you’ve been labelled, most docs can’t see past that and ignore the rest of the problems. Video conferencing has been fantastic though!

I really hope that the new neurologist can give you some answers, even just for your own peace of mind. Good luck! 😊🌸

[Lecture in reply to ChronicCrafter]

chronic syndrome pain is a problem of the central nervous system. I do not know if it's your case : rarediseases.org/rare-disea...

Best regards

Lecture

[ChronicCrafter in reply to Lecture]

Hi Lecture,

That article is really interesting, it sounds similar to what I have experienced. The only thing that the doctors have considered as the cause of the pain is nerve damage from repeated surgeries and damage.I’ve tried a few nerve blocks, but at the moment I’m managing with as few strong painkillers as possible and just bearing with it. 

Have you had any experience with this?

[Lecture in reply to ChronicCrafter]

a few weeks ago, I listened to a french conference about magnetic transcranial stimulation about rebellius pain to any treatment.

The problem is that MTS is not allowed by governments. We know, it works. But I think it's better to wait until researches will be made to know how to treat patients with the most effective support and security

Best regards

Lecture