So I’m just another case with the same old story “symptoms are in your head” “you need a mental health referral” You’d think this day in age people are listened too 😔
Potentially 3 years ago I could of got answers when sat in front of a specialist with my 3 children, crying and begging him for help! That day haunts me so much as all I got in return was my referral to mental health!
Fast forward 3 years and with your help I got to where I needed to be. Now I have a fast filling diary with a EMG test, Lung function test and MRI scan. All these appointments are quite overwhelming but I wanted to share this with you all, to show that your fight must continue no matter how much rejection comes your way.
I’ve also learned that many With Dermatomyositis are diagnosed with lupus and vice versa as they share so many symptoms and produce the same results in a skin biopsy . I understand the challenges faced by health professionals but if they would just listen they could potentially save us valued timed and save our organs from unnecessary damage 😡
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Lisalou19
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Oh you poor thing having to find yourself vindicated by a diagnosis of another rarer connective tissue disease to the one you’ve got your head around. It does make one feel furious with all who have belittled us during our journeys doesn’t it?
In anticipation of my own CTD review tomorrow morning, ironically in the clinic for Scleroderma and Myositis patients where I’ve somehow ended up, I’m expecting to be told there’s not much wrong and be made to feel like an overthinking hypochondriac. So I was just considering whether it’s acceptable to be very blunt if this happens?
I have decided that it is as I can always say that the combination of flaring Trigeminal Neuralgia and dental pain have unhinged me!
I think that what we all want, most of all, is to feel genuinely listened to, trusted and believed.
Also we want honesty about how little they actually know and frankness about the role health economics are actually playing in their decision making. My rheum no.1 used to be very up front with me about this stuff. But lately I’ve felt that they would rather make me feel as if it’s all in my head than admit to me that it’s real but that the only treatments that have night helped or even still help prevent damage occurring to my nervous system are scarce resources and just far too expensive.
If they told me this I know I would just deal with it. But I can’t accept being told it’s psychosomatic and this then makes me really anxious and also angry.
So I expect you are feeling both vindicated and angry now - which is very much fair enough in my humble opinion!! Getting these feelings off your chest is very important in my view and sometimes I find that writing letters to the consultants who have belittled me is the most cathartic approach and also helps them to become better at their jobs by knowing how they made me feel. Xx
The biggest battle is that some of these medics do not have the balls to admit they have no idea whats going on, and neither the courage to help us find the answers.
There is not enough media coverage on these rare illnesses to highlight what many of us have to go through to get a diagnosis.
it is a very lonely, isolated place to be in where you feel trapped inside a body that continues to attack itself and you just get hit with this "its in your head"
Before I was prescribed my immunosuppressants the doctor asked me if I was allergic to anything, my response "my own body". He said that is how many of his patients describe living with an auto immune disease.
I can honestly say my health has deteriorated over the past 13 months and I sent an email to my nhs consultant, saying If I did not have rashes I would be convinced I have MS!!! That also got a reply of "I have no reason to suspect any nerve of muscle involvement". Again just listen to US!!!!
I hope you do not get brushed off at your next appointment! I understand though as soon as they appear to not listen, the frustration builds up which floods you with emotions and then it becomes hard to express yourself.
Once I have got all these tests out the way I am going to email the consultant who brushed me off with mental health, not for any reason other than, the next time you have a grown women sitting in front of you with her children sobbing and begging for help "LISTEN"
PS your user name always makes me twitch my toes makes me smile. xx
SUPERB that you are getting somewhere Lisalou! How RIGHT you are: "if they would just listen".....I was strongly recommended a psych referral at the specialist appt when ANA was ordered (silly cow, doctors are supposed to rule out organic illness before resorting to the default psychological diagnosis) - it was positive, dsDNA too...VV lucky to have no damage apart from the old hooter
I will 100% keep you updated, and when my energy levels increase and I start to feel more normal I really want to try and tell my story through the media. So many people are suffering and I think of many people out there who do not have the strength to battle that are suffering in a very lonely place.
I don't know much about this illness but have decided to no longer read about it, as its all grim and I need to be positive. xxx
👏 👏 👏 We're behind you all the way with that! 🌟🌟🌟 Here's hoping once you're on a treatment plan, remission will be speedy! 💪 🤛 👍
I met with the local Medical Director about a complaint of mine last week...as a psychiatrist to trade, he was very interested in the human impact of misdiagnosis, and plans an information day for clinicians...would it be ok if I send him your post Lisalou, as it sums it up so succinctly? I would of course say if he wanted to use it in material, he'd need your permission. xxx
I’m sure it must cost the nhs more money by passing us around to different specialist and different hospitals! I honestly need one of those maps where you scratch off what countries you’ve been too, only mine will be for Hospitals and departments 😂x
Your story is very similar to mine, minus the three kids. I'm so glad that you are getting the tests you finally need. The EMG doesn't hurt so don't worry about that.
I think that if doctors listened the first time round less damage would be done to our bodies (and minds). I felt perfectly sane when I first got unwell, but after 4 years of fighting with the doctors I felt like I needed a mental health referral!
I’m sorry you have been through the battle and been let down. The knock on anxiety all this has caused and you have me thinking now, after all this time I feel like a totally different person, is it the illness? Or the impact of such a long drawn out process.
I feel this whole thing has taken over my life.
I hope your now in a better place, and well done for keep fighting your corner xxx
Well if there's money for gender realignment maybe we should all get ourselves changed into men n then we might get listened to!!
I'm so sorry to hear about your struggles n yes unfortunately it seems more common that we all have to jump through hoops..see different s docs who don't have a clue..sob our eyes out because of pain n frustration n exhaustion etc etc!!
I agree that this forum is a fabulous place to get ourselves equipped in order to tackle doctors at our neverending appointments..I've got more info on here than anywhere else!!
LOL I'm seriously thinking about ditching my boots for something more feminine...I'd have my nose feminised more quickly that way (inflammation has left it a bit clunky)! xxx
😂I've got short hair n don't wear makeup..can't wear the boots now but I've often been mistaken for a Mr...never by doctors though coz they know my name!! I love boots!! I have to wear slippers now n even they look like boots...purple ones!! Xx
I've been mistaken for a Mr all my life...I've even been charged the men's rate in a unisex hair salon! 😂 Now my hair is long, if I try to hide the bruising round my eyes with concealer, I look like a bloke in make-up and a wig! I had feedback from a job interview that was all 'their'!!! 😂 😂 😂
Love the sound of boot-lookalike slippers, mmm xxx
😂my best moment was when I was in hospital with an all over body rash..I looked like the singing detective..I had to get out of there for fresh air..I could walk then with a stick ..I went back to the ward after one of my fresh air breaks n as I came back I bumped into a nurse n a porter(male)..he said 'excuse me sir but r u supposed to be here?'..I said 'firstly I'm a lady..n secondly I'm a patient on this ward!' 😂😂😂CLASSIC!!! XX
Don’t let them get to you .i have been there .its because they don’t understand.i also think depression tabs are what’s being pushed over the last few years .more poisons to hurt our immune system?try to stay as healthy as you can (food I meant)x
Oh Lisa, I’m so pleased you’re finally getting some answers and hopefully proper treatment to help now but so sorry you have one of these diseases and so sorry you’ve had such an awful journey to get the diagnosis. It’s just not fair and you’re so right that listening and believing at the right time would have prevented much of the heartache 🙁
Let us know how you get on and keep fighting for answers although it sounds like you have some medical professionals on your side now so you can all hopefully fully concentrate now on fighting the disease together 🤞 xx
Hello Lisalou19, your energy to get Doctors and Consultants to listen comes through in bounds.
I was diagnosed was Dermatomyositis in June 2015, that was after a long wait. A wait that could have been avoided if only someone took the time to Listen.
They fob you off, telling you that it is just an allergy, but no ths down the line you are getting a whole lot worse.
As these types of diseases are difficult to diagnose and treat, we need the professionals to listen and help us more than they presently do, instead we leave our appointment thinking that was a waste of time.
Listen, record, and sit down with other professionals and work out a treatment plan, if is does not work, go back to the drawing table, never fail your patient.
Fobbed off with Allergies which then come back negative, and now they suspect Dermatomyositis. I am progressively getting worse but I know I’m in good hands. Rheumatologist next Friday, I really need some help I have the body of a 90 year old . I explain what I’m going through as pain, heaviness rather than weakness x
Good Morning Lisalou19, I hope your visit to the Rheumatologist goes very well. Hopefully, he/she will take on board how difficult it is for you to get through a day. From wakening in the morning, getting washed and dressed takes it toil. This illness does still your quality of life away from you. All going well you will be put on a treatment path that is ideal for your progression back to living a good life.
Keep me informed of the outcome of your Rheumatology visit.
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makes me smile. xx
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