People who spend years and years trying to get a medical diagnosis

[Leavesofautumn]

I know there are people with specific medical conditions, e.g. PCOS, but nobody will listen, and it just takes one doctor to finally agree. But I'm talking more about the people who have "mystery" symptoms, where you keep going from doctor to doctor but nobody can work out what's wrong, or you keep being told it's psychosomatic when you know full well it isn't.

Please tell me it gets better. Please tell me someone worked out in the end what was wrong.

I'm sick of being fobbed off by doctors, and this includes specialist consultants. I'm sick of being told nothing's wrong.

Sophie, I have had depersonalisation at times over the years too. It's as if we are seeing things going on around us but at a distance and we are not part of them, like being in a glass jar, insulated. It's a type of self protection but can become irksome. There's nothing you can do, it goes away in its own time. Sometimes it's traumatic when the walls collapse.

We're still here though, and functioning.

This was me in 2010. I actually figured out by myself what was wrong and took myself off to a private doctor who specialises in that condition. Over the years I've continued to be the one to figure out different random issues that have cropped up. Doctors usually just aren't used to dealing with zebras.

@Crinkle77

Yes I'm convinced I have M.E or something like that. I have lots of vague symptoms like digestive problems, joint pain, exhaustion, muscle weakness. Ive had various blood tests and been to rheumatology twice but nothing significant has been found. My vitamin D was through the floor and had a loading dose and then maintenance doses which helped but I didn't feel a dramatic difference like I expected. I have arthritic change in my knees and feet which could explain the pain in those joints. I'm also flat footed and have insoles to put in my shoes which does help. Every now and then I have these big crashes where I feel dreadful for a few weeks. The doc suggested diet and exercise which I know I need to lose weight which would help. He said I should be doing 3 x 1 hour sessions of weight bearing exercise I think he said per week. But this would absolutely kill me. I probably wouldn't be able to do it but if I did I'd be exhausted after. Cos of covid I haven't chased it but yes I do feel like something isn't quite right.

How old are you? I am staggered by how few women (self included) realise that many of these symptoms are typical of peri-menopause. The deep joint ache that keeps you awake at night, crashing tiredness and muscle weakness.

It helped me to take liquid herbal iron (Floradix or Feroglobin) and Vit D spray not tablets which don't get properly absorbed. You could also try doing weight bearing exercises starting with online 5-8 minute videos of body weight every other day, so they don't exhaust you, and build up very slowly from there. Losing weight has helped me too with the exhaustion and joint pain both of which have almost vanished, though I think the exhaustion going is more to do with coming out the other side of menopause.

I was actually going to make a thread to ask how many people are just living with all kinds of symptoms and havent been diagnosed.
I have very similar to you, op, and it's coming up for 2 years now that I've been going backwards and forwards to the doctors.
I honestly don't know how much longer it will be until I have to take to my bed and stay there.

I feel horribly embarrassed at 'pestering', but I've no other options because I can not carry on like this.

@Crinkle77 Seconding the suggestions of perimenopause (good advice available here on Mumsnet) and coeliac disease (ask GP for a blood test and don't give up gluten first).

Another thought is Ehlers Danlos syndrome, especially as you mention orthotics - mine help to keep all my bendy joints in alignment, though I have the pain/fatigue symptoms you mention. Good luck.

I also thought Crinkle77 sounded like she had Ehlers-Danlos, but she said she'd had two rheumatology appointments and they didn't find anything. Then again, this thread is full of people whose doctors didn't find anything, so you never know.

Thanks everyone for the advice. I'm 43 and have been feeling like this for about 5/6 years so possibly a bit early for perimenopause? I've also been tested for coeliac as my mum has it so knew the symptoms to look out for. Regarding ED syndrome I've had xrays on my knees and feet and both times they've said there's arthritic change but there have been a couple of instances that have made me wonder. Few years ago I fell and badly sprained my ankle. It wasn't broken but took over 12 months to heal. I had to have physio and eventually it went better. Also a couple of years ago I did evacuation chair training in work so using a special chair to get people with disabilities down the stairs in event of a fire. I think I sprained my wrist doing that too and it took a few weeks to get better after that. I do normally use the dulcolax vit d spray cos I've heard it is better for absorption but have run out and not got round to getting more so just using standard tablets at the minute.

What are your symptoms @Leavesofautumn?

I have osteogenesis imperfecta, I finally got diagnosed in my 30's when my dad got diagnosed, the majority of my health problems over my whole life are now explained. The relief is unimaginable. As a child I know my DM was accused of Munchausen and as a teen I had some terrible experiences, especially after dr's saw certain words in my files. The long term experience is incredibly scarring and even now I feel I have to go over and above to prove any medical issues I or my DC have to HCP's.

I have spent years in agony because of doctors really not doing their job.
One time their lack of listening nearly killed me.
I spent 4 years unable to eat or drink anything with having a dreadful stomach ache.
I asked if I had a stomach ulcer but was told I was just being silly and should eat.
In the end I had a screaming fit at the doctor who begrudgingly sent me for a Barium meal test
I didn’t have one ulcer but a stomach full and was given 6 weeks to live. Or take a trial medicine that saved me but I don’t think ever got put into production as it had bad side effects.
I then spent 7 years with a slipped disc. The consultant at the orthopaedic hospital never looked at me and kept telling me off for not getting better.
Went to see a osteopath who immediately saw the bones in my back were sticking out where they shouldn’t stick out.
Within 3 months I was free of pain.
Dh spent 6 months + going to the doctor about stomach and bowel issues and asked if he had bowel cancer.
He was told to stop looking at Dr Google.

By the time he could hardly walk and I had to take him to A&E he was within 48 hours of dying as he had a massive abscess on his spleen.
In the end to get treatment and an operation we had to pay privately which wiped us out.

@Leavesofautumn

Exactly. The main reason why a lot of undiagnosed people burst into tears in appointments is because of the stress caused by doctors not listening. And even once you're diagnosed, it's still very emotional because you still resent all the doctors of the past who didn't listen to you, who potentially made your health worse because many medical conditions can be better kept at bay if they're dealt with early, before extensive damage has been done.

Referring people to counselling is just what doctors do when they don't really know what's wrong. In fact, sometimes it can end up being even more harmful because the time spent in counselling would be better utilised in finding a medical doctor who can actually help properly.

I completely disagree with this, OP.

Counselling was what helped me to take the emotional "heat" out of appointments and enabled me to better articulate myself during appointments and stuck to the salient facts.

Having counselling also meant that I felt listened to, so that I didn't go into medical appointments feeling voiceless or feeling the need to pour my heart out or vent all my bottled up feelings to the first person who listened, thus scuppering the chances of that doctor being able to hear the cold hard facts of the scientific evidence I actually wanted to present to them.

Counselling was a godsend for me and it's what turned things around so that I could get more out of medical appointments and actually get to the bottom of the science of it all without it being clouded by years of emotional trauma of feeling unheard and dismissed.

Just to clarify- I don't disagree that it's a traumatic experience.

I just strongly disagree that counselling/psychology support is a waste of time in those situations. It was the missing piece of the puzzle for me as it enabled me to reflect on the part I was playing in not being listened to, which enabled me to take far more control of the situation.

Omds, I can relate.
In my mid 20s, despite all my efforts I began gaining weight.
My periods were all over the place and I Started developing facial hair.

Then I got married, had a DD, then experienced off the charts tiredness(my family said it was just having a baby, but the tiredness lasted years), moodswings(everyone tried to insinuate I was unstable, once they couldn'tcall it postnatal depression anymore), constipation and then I gained 4st. There were elements of being in an unhappy marriage and him being unsupportive. Then I started loosing babies, we rarely had sex, (twice a year, sometimes less) but I managed to fall pregnant on four occasions over four years after our DD.

After my 3rd Miscarriage and after begging for help. I was diagnosed with hypothyroidism, by that point my mental health was in a toilet somewhere and I was 5st overweight, trapped in a v unhappy marriage. Anyway, I my case it felt like a team effort to ignore my problems, I was continually called lazy, despite dragging myself to the gym/aerobics 3 times a week and at one point doing boot camp for 9 months. I also held down a career in nursing.

I feel I was failed by everyone, for a sustained period of time. I feel robbed of my daughters siblings.

I kicked my husband out within Two months of starting my meds, as the brain fog clear and I could see him for what he was.
I have stabilised my weight.
I have moved forward in my career.
I have a happy child..
I hope you get sorted

Two daughters with Ehlers Danlos here.. took until their 20s to be referred to specialists and have a formal diagnosis despite constant dislocations, heart problems, and increasing pain. And a suspcious eye at us then DD2 was small and had multiple dislocations.
Docs ignored dhs family history where several family members are the same and in fact DD1 was only diagnosed because she was a medical student herself and her heart problems and POTS were picked up when the students were testing each other and then she got referred!!!

She's very good at working with patients with undiagnosed problems , funnily enough...

My Dad had ankylosing Spondilitis.. dismissed by the gp for years. Eentually identified by an Osteopath and subsequently confirmed . I'm having similar problem and weirdly it was the NHS physio who mentioned it to me before I'd said any family history! I bet it gets ignored...

And you ended up with self-blame because of the part you apparently played in not being listened to. Doctors are supposed to listen to their patients. It's their job. There is something very seriously wrong with the medical system if you feel like you have to go to counselling to get trained in how to get doctors listen to you. It's a very roundabout way of doing things and is a sticking plaster approach. Patients should not have to go to counselling to learn about the part they played in being ignored by the medical profession.

Patients should not have to go to counselling to learn about the part they played in being ignored by the medical profession.

I get that, but for me personally, once I realised how much my own emotions were playing a part in my situation (regardless of the cause), I wanted to do whatever I could to mitigate the barriers I could take some control over, especially since there were many others that were out of my hands.

Tbh, for myself and my DC who've been in this position, even after various diagnoses, we were all still left with the trauma of not having had our needs met all those years - it doesn't just magically disappear once one gets a diagnosis as IME there's still an awful lot of resentment about the missed years and opportunities as a result of not having been treated earlier. And counselling can really help with that too.

I really can relate to physical doctors bumping you back to psychology and then psychology saying "but are we actually sure there's no physical cause?" and going round and round in circles for years - DD is still going through this now (14 years and counting, even with a rare genetic diagnosis) and it's incredibly frustrating and soul-destroying.

But IMO, unless you're dealing with actual medical negligence, I believe it makes sense to try what the Dr suggests before dismissing it, as it's really hard to argue that it doesn't help at all if you haven't tried it, in my experience.

I have Ehlers Danlos, got my dx at the age of ten and every bloody thing is blamed on that. So, when I got Crohns/ ulcerative colitis, it was years until I got somewhere, was told from 45 -55 that it was EDS, a touch of irritable bowel, anxiety because I had an abusive husband, the menopause. Despite the fact that they had been told both mother and two siblings have it. Had I been diagnosed earlier I probably wouldn’t have a stoma now!

Yes, it took them four years to diagnose DH. He became very expensive though ( due to extended hospital/ care home stays when he was immobile and he was ‘ difficult’ when in these facilities) and I feel this speeded up the diagnosis and genetic queries.

No one listened to me saying his personality had completely changed ( never mind falling over and breaking each leg every year for 3 years on the trot) until they were dealing with his new personality day in and day out for 11 weeks in an expensive hospital bed because the local care home wouldn’t take him due to his form for upsetting elderly/ sick residents. ( yelling ‘ you sad money grabbing grey haired wan*ers!’ During a bingo game is not conducive to rest and recovery… evidently. )

They were fairly lively in prescriptions, psychiatrists and extensive testing when the senior nurses couldn’t cope with him and I refused to have him home ( house in my name nothing they could do, we don’t live in the UK) until they listened and acted. I felt dreadful playing hard ball but if trained nurses have to call the police on a man who is constantly yelling obscenities and they cannot cope how did they think I or our quiet, pleasant neighbours managed at home? DH previously was a maths teacher with calm and pleasant demeanour. His behaviour had seriously deteriorated over 5 years ( I’d known him for 25 years). Finally they found a rare genetic disorder and because he never does anything by halves he has got the complex version …. He is medicated and his old personality is back 80% of the time….. although his mobility is shocking and he is young for this disorder.

Doctors don’t listen to women. I watched my mother writhing in bed every month due to an undiagnosed reproductive system issue and they blamed her psychological condition ( she had been sectioned a couple of times) no one would imagine that level of physical pain and agony….

Medicine is made for men to be run by men…..

@LonginesPrime

Just to clarify- I don't disagree that it's a traumatic experience.

I just strongly disagree that counselling/psychology support is a waste of time in those situations. It was the missing piece of the puzzle for me as it enabled me to reflect on the part I was playing in not being listened to, which enabled me to take far more control of the situation.

The thing is that the moment counselling/psychological support/medication appears in your notes, everything up to and including your humerus literally protruding out of your back because it's dislocated again is ignored because it's assumed it's all in your head.

It is absolutely a waste of time when you need physical treatment for a physical condition. They wouldn't tell a man with a broken leg 'Oh, that must be very difficult for you. I see that you've had antidepressants before. Would you like a referral to talk to somebody about it or we can give you something that'll help you sleep a bit better and see you again in a month?'.

It's also more of that blame game. Sounds like it was your fault you weren't listened to. Your fault for not saying the right thing. Your fault for not presenting the way they expect to see. Your fault for being ill, female and having the temerity to not be a six foot tall, rugby playing man with a simple injury but expecting to be listened to, taken seriously and not told to run along now, go and tell somebody paid to pretend to care. If you move areas or have a condition that goes into remission, it's likely you're going to be back at square one when it comes to convincing the new GP you're not mentally ill when it flares up again. Because there's a mental health referral on your notes. And you'll be older, so will most likely have the 'perimenopause is known to cause this, take antidepressants and lose some weight' element to contend with.

If you think I'm being belligerent, well yes, I am. Because I've been fucked around, dismissed, accused of having Munchausens by my ex (although he also claimed I willed this verifiable set of physical medical conditions upon myself because I wanted to abuse/control him and qualify for benefits, which would surely mean it was simultaneously real? Fucking twat and his magical thinking) and have sustained permanent damage as a result of patronising wankers as gatekeepers who see the possession of a uterus means it's all imaginary and think it will be fixed by fucking with my brain chemistry to make me docile and compliant and in a vaguely happy blur, rather than dealing with my arsehole immune system (which is marginally more of an arsehole than I am, but not by much, admittedly) and shit genetics.

Even DP knows better than to mutter about reducing stress when I've got more scales than a fucking fish on my hip. Mainly because whilst he'd been told that caused his Psoriasis since a kid, he's also found out how effective actual medications are from seeing me respond so quickly to the right one.

Get me a proper treatment for actual problem, my stress is reduced. Just like that. No fucking with serotonin reuptake, no fucking with noradrenaline, no pissing about with acetylcholine. Sort the immune system shit and immediate physical stuff from having crappy connective tissue and I'm fine. But start fannying around with 'Do you think...you would feel better if...we can give you these off licence but we're not telling you that ...it's your perception causing pain' and you're getting in my way.

Get me treatment for what is actually wrong and mentally, I'm fucking tickety-boo.

It takes a long time to get to the point where you're able to tell a consultant 'Yes, I have heard of that phenomenon where the nerves are firing inappropriately, however, I don't think that really applies when the site changes to match what is currently inflamed, hot and has radiological evidence of injury' or 'Yes, I agree that exercise improves mood and I would love to go back to the gym - yes, I have been a regular for many years - but the issue is that I can't actually walk there right now, so I don't think an aerobics class would be particularly helpful before we've established whether this is tendonitis, bursitis, a stress fracture or a rupture first'. And no amount of badly photocopied worksheets about how to tell your husband that you feel really sad when he doesn't pick his socks up off the floor will help when you actually need an MRI followed by steroids, Physiotherapy and a set of custom orthotics.

Oh and I forgot.. my son has Ulcerative Colitis, but because he has autism and OCD it was repeatedly ignored (while needing the loo 20+ times a day) until his doctor sister went to the doctors with him instead of me... they listened to her and he was on meds by the day after his colonoscopy. .
I am an articulate sensible individual and it infuriates me that he was left to suffer because I was just his Mum so couldn't possible (accurately) diagnose a problem!

The thing is that the moment counselling/psychological support/medication appears in your notes, everything up to and including your humerus literally protruding out of your back because it's dislocated again is ignored because it's assumed it's all in your head.

Exactly this. I'm already taking propranolol and I'm pretty sure it's used against me at every opportunity.

@LonginesPrime Did you know there are some medical specialisms that claim to be psychological treatments for physical problems? There is actually a branch of medicine called "Psychodermatology" which is for patients with skin conditions with no discernible cause. Patients literally get sent to a dermatologist who sets out to convince you that it's psychosomatic. I don't usually call bullshit on entire areas of medicine, but in this case, I'm calling bullshit. It's patronising in the extreme and it's blaming patients for real physical problems. Luckily most of us here tend to be quite forthright in speaking to people, but I dread to think how many vulnerable women are persuaded by this nonsense and end up trying to convince themselves there was nothing wrong in the first place. Doctors are sometimes wrong, and sending someone to psychological services often means washing your hands of the patient as you no longer want to deal with them.

Yep. My diagnoses are endometriosis, adenomyosis, ME and fibromyalgia. Any symptoms that don’t fit are ignored. Blood tests are all fine. It’s been 11 years. I feel sure there must be something to find but so far nothing. It’s gutting to feel so awful and there’s no definitive reason and no treatment.

And this is all bearing in mind that I'm talking to doctors about my own body. I can't even begin to imagine the distress caused to mothers being accused of Munchausens-by-proxy (or whatever it's called these days) on behalf of their children. There is literally a pp on this thread who said she was scared her children would be taken away from her. But no, let's ask just send everyone to counselling instead of finding out the real problem.

I've had a dx of chronic fatigue and Fybromyalgia for 2 years but I'm convinced it's not 'just' that but getting that far was exhausting, so I haven't yet pursued any further, I think it's ED. Doesn't help that my youngest DD3 has various feet and mobility issues and possible ASD and I've had to fight all the way to get anywhere - also think hers could be ED. I feel like the surgery virtually roll their eyes at the mention of me as though I'm in it for the shits and giggles. If I think about to too much I get bloody furious and it's terrible for my MH.

@ElsaMars I hope you can summon up the energy one day to push for a rheumatology appointment.