Consultant Fatigue

I’ve come down with a bad case of what I call ‘Consultant Fatigue’. It’s where I’ve had so many visits to medical consultants that have gone badly, that I really can’t bear any more. Just to convince myself that my feelings are valid, I’ve decided to list them here. I hope I remember them all. I’ve also included price of private consultations. 

Maxillofascial Consultant: this was the first consultant I saw, after my dentist told me that my jaw pain wasn’t from wisdom teeth as I’d thought, because X-rays show I don’t actually have any wisdom teeth. He took X-rays of my jaw, said it wasn’t arthritis, gave me a few tongue exercises and said I had ‘myofacial pain syndrome’ and to ‘Google it’. Then showed me the door. Google told me that, like fibromyalgia, it was one of these pain syndromes that doctors often diagnose when they can’t figure out the cause of the pain. That didn’t give me a good feeling. €180

Orthopaedic Surgeon:  I then went to see an orthopaedic surgeon because my doctor suspected I might have sciatica. My MRI was fine but she said I should see him anyway. He spent 5 minutes examining me, while also seeing another patient in the room next door. A nurse loaded the MRI for him, he glanced at it and said it was fine ( I knew that!) then got me to walk up and down and touch my toes. He said I had an unusual gait, and that my spine was remarkably flexible for my age. That most people would love to be as flexible as that. He said he had no idea what was causing my pain but that I should try Lyrica. I told him I’d had a very bad reaction to that in the past. He was out of other ideas. €200. 

Rheumatologist (1): because I have psoriasis and pain in my joints, I was then referred to a rheumatologist, in case I had psoriatic arthritis, despite blood test showing little likelihood of it. My joints are never red or inflamed. I had asked to see him as a private patient and was surprised when I hadn’t heard back about an appointment after two months. Turns out, I’d been put on the wrong list, the public one, and was told when I phoned up that I’d be waiting over two years! I set the secretary straight and had the appointment within two weeks. This doctor examined my joints and said it was ‘great’ I was ‘so thin’ as it made my joints easier to examine. He also considered himself an ‘expert’ on osteoporosis but when I asked for a DEXA scan he said I was ‘too young’ to be worried about that. (Despite low weight being a risk factor). He then pronounced I had fibromyalgia, prescribed Cymbalta when I refused Lyrica (I reacted badly to the Cymbalta too) and Ixprim and said he didn’t want to see me again. €180

Gastroenterologist: because I had a lot of unexplained gastrointestinal issues, I suspected I might have coeliac disease. The blood test was negative but I asked for a biopsy as well. This was also negative. This consultant seemed to care, but after he had tried various treatments (domperidone, antibiotics for SIBO, PPIs) and they had all failed, he seemed to give up. He prescribed all these things without doing any diagnostic testing, and had a ‘if this works than that’s all the testing we need’ kind of attitude. He refused gastric emptying testing as ‘it’s a very nasty test’ but said I probably did have gastroparesis. He said he could see from the biopsy/scope that I didn’t have Heliobacter pylori but I did have gastritis. But that it was ‘mild’ and the PPIs should ‘kick in soon’. (They never did). When I returned to see him, he referred me to a dietitian to try the FODMAPS diet. €180, €100 (review)

Dietitian: she failed to notice how low my calorie intake was (I found it hard to talk to her so didn’t highlight it but did show her my food diary). She said my food choices were ‘very healthy’. She gushed about the FODMAPS diet. I tried it out. Got more and more obsessed with it, eg emailing in the middle of the night about whether red currants were ok to eat. I had to give it up. €100, €80 (review)

Gynaecologist: as I’d been having random internal pain my GP referred me to a gynaecologist. Though really he was a gynaecological surgeon. He poked around inside me and when I yelped when he prodded my ovary he said that though the ultrasound showed nothing, he wanted to ‘take a proper look inside’ and scheduled me for laparoscopy. Now, I’d had emergency surgery thirteen years before which resulted in an ovary being removed. After my stitches were removed, it had never been looked at again. So, there could have been adhesions so a review was a good idea. He looked, there weren’t any, he gave  the ‘all clear’ and said he had no idea what was causing the pain. At this point I suspected EDS. I told him I may have a connective tissue disorder and he looked at my notes and said ‘ ah yes, the fibromyalgia’. €180

Rheumatologist (2): I ended up self-referring to this doctor as my GP refused to refer me. He has a special interest in EDS and she said it was impossible for me to have it as ‘it’s as rare as hens teeth’. This was after I realised there was more going on with me than could be explained by fibromyalgia, plus the fact that my kids were very Hypermobile and in a lot of pain. This was the first consultant who listened to me rather than looked at the clock. He was caring and considerate and had me diagnosed with EDS within 10 minutes. We had to drive four hours to see him but it was worth the pain and time. He didn’t have much to say in respect to treatment though, except for suggesting Physiotherapy and probiotics. €150

Neurologist: I had changed GP at this stage, and she referred me to a neurologist as I was having bad headaches and tingling/burning/pain in my feet. He hooked me up to a nerve conduction test device and proceeded to test me while talking to me at the same time. He claimed to ‘know all about EDS’ but failed to really listen to me. When I made the mistake of mentioning fibromyalgia, I swear his eyes glazed over. The test was negative, but though I wanted to, I couldn’t tell him that the proper test for small fibre neuropathy was a skin biopsy not a nerve conduction test. He wanted to book me in for a lumbar puncture despite it being contraindicated for EDS unless vital. He also wanted to start me on steroid infusions despite not knowing what he was supposed to be treating.  He didn’t seem interested in the headaches. I went out to his secretary to book the lumbar puncture. And realised that every single patient he was seeing that day was booking one too. That set off alarm bells. When I went home, I phoned up and cancelled it. The next day, I got a phone call from the hospital ‘to confirm the date’. His secretary hadn’t cancelled it. My GP then told me that the neurologist had diagnosed me with Chronic Fatigue Syndrome. First I’d heard of it! I told her that all my fatigue was from the EDS and not a separate syndrome. €180

Gastrointestinal surgeon:  as I was still having gastrointestinal issues, my GP referred me to a gastrointestinal surgeon. He was kind and very interested in EDS. He even opened up a PowerPoint on gastrointestinal issues in EDS in front of me. He said he’d only had one EDS patient before and I was definitely one of his more complex patients. He booked me in for a scope. He found gastritis and a ‘small’ hiatus hernia. He seemed disappointed it was small as if the size was out of proportion to my symptoms. He said it was too small to need an operation, that I wasn’t a suitable candidate for one anyway due to the EDS and put me on high doses of PPIs, to be tapered down by my GP. Again, these have done nothing for me. €150

As I’d spent a lot of money at this stage, and couldn’t claim any back from my private health insurance as we hadn’t reached the ‘excess’, I told my doctor that future referrals should be public ones unless really urgent. When I started getting add tachycardia and heart issues, she referred me to a public cardiologist. 

Cardiologist:  my GP wanted me to get a 24 hour holter monitor to see why I might be getting episodes of tachycardia. After waiting ten months, I finally got an appointment at the hospital. I waited in line for over an hour. The nurse then did an EKG (which the GP had already done) and it was fine. My heart rate was 100 bpm even after she’d taken it three times ‘to be sure’. I then was told as it was my first time there, I’d have to see the cardiologist. He told me that 100 bpm was ‘at the high end of normal but it’s fine’, that because I was so thin I’d be more aware of my heart beating, and made several references to ‘women your age’. I’ve no idea what he meant but could infer he didn’t mean it in a positive way. Then he agreed I need a holter monitor and said he’d arrange it. When I asked when that would be, thinking maybe a week or two, he replied ‘six to seven months from now’. And that was it. This appointment was free, but the wait was very long and he says he didn’t know what he can do for me anyway as normally he’d prescribe beta blockers but can’t because of my low blood pressure and history of fainting. I wanted to ask him for a Tilt Table Test but he was so dismissive I didn’t have the nerve. 
ETA Psychologist: I knew I’d left someone out. I saw a psychologist three times. The fourth appointment, she never showed up and only contacted me to tell me she’d be late, after many many missed calls from me, when I’d already gone home after waiting an hour. I was definitely not going to see her again after that, as she could not be trusted. All she taught me were a few breathing exercises, which I’d already been doing. In total, I spent €380 on her. 

I have also not included the €150 I spent on Myofacial release massage, the €300 I spent on counselling that I left after she started going on about Reiki ‘energy’ and chakras, or the €600 I spent on acupuncture that hurt so bad the Chinese therapist told me I’d better stop. 

I also did not include the €520 I spent on consultants for the children in the past two years. 

So, there you have it. Ten consultants in five years. Not as high as some people I know, but plenty for me.  A fortune in fees and not much helpful advice. 

And this is why I’m avoiding consultants for now. I’m sure you understand! 

[image of a simple drawing of a stethoscope.]

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5 thoughts on “Consultant Fatigue

  1. That is a lot of money for little help. It seems most professionals rarely know what’s wrong and/or how to help, you’d think in their line of work they’d have to keep up to date on every possible condition out there but few rarely do. Have you googled POTS/dysautonomia, many who have EDS and fibro also have that, which causes fainting and tachycardia and would show up on a TTT. Can understand how after seeing all those people and still be no further forward you’d be exhausted and reluctant to ask for more tests. I hope they do figure out what’s causing your problems, you shouldn’t have to pay so much money for nothing.

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    1. Thank you. The rheumatologist who diagnosed me with EDS also said I have dysautonomia but couldn’t say which type. This is why I wanted to ask the cardiologist for a tilt table Test. The hospital does have a tilt table but apparently it’s little used and they don’t really know how to do the test properly. Hopefully next time I see him I won’t be so intimidated and can ask for one. Though tbh I’m not sure what help I’d get even with a POTS diagnosis. I’m taking a break from doctors right now. Too disheartening! Will just keep muddling along on my own.

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  2. Ha, it only took me until the orthopod to start thinking is this EDS? Beginning to think that doctors should be avoided altogether! Have you tried yoga? (With a teacher who knows about EDS.)

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