To ask how many are suffering from a longterm undiagnosed illness?

[SinkGirl]

Last night I sat sobbing watching Diagnosis on Netflix (a programme where a doctor writes columns about undiagnosed patients with unusual symptoms and tries to crowdsource answers). It’s so wonderful to see these people getting answers that are helping them, and rather selfishly I’m sobbing because I don’t think I’m ever going to know what’s wrong with me. And it makes me wonder how many of us are in this situation?

It’s nothing so dramatic as these cases, no one would ever be writing an article about me, but it impacts my life, stops me working full time, affects my parenting. And above all I’m just really sick of feeling so awful and being so limited. It has been going on for over 10 years now.

I’ve posted about various aspects of this under various usernames over the years. I’ve had to become an armchair medical detective because god knows nobody else is going to care. I’ve narrowed it down (I believe) to a hormonal issue but despite searching I’m yet to find an endocrinologist who really specialises in female hormones - diabetes and thyroid, sure, but no one with expert knowledge of the intricacies of female hormones. Everyone says it sounds like my thyroid, and it does cover pretty much every symptom, but tests from the GP have always come out well within normal range. I’ve done some private tests which are closer to being out of normal range, but not enough. Even thyroid antibodies are in normal range.

I’ve had every basic blood test you can think of and nothing shows up. I’m told it’s ME or fibromyalgia but they don’t cover everything that’s going on. Main symptoms are fatigue, pain, peripheral neuropathy, heart palpitations, body temp issues, bad skin, hair loss, gastric issues, and more.

I recently had a period of two weeks where everything improved but new problems started (high pulse, high BP, like I was on a stimulant)... then it all came back. Then a smaller improvement, then back. Then a tiny improvement, then back. I tracked it all and realised it was related to my cycle. The first half of my cycle was when the improvement occurred each month for a few months right up until ovulation, and each month the improvement diminished until there was none. This has happened exactly like this before, when my hormone levels change due to coming off hormonal contraception, pregnancy, breastfeeding etc. But there’s been no recent changes.

I’m baffled, doctors just shrug at me. They think I have health anxiety I’m sure but I really don’t - I don’t worry that it’s something awful or whatever, I just want to feel well, have energy, not be sitting here watching CBeebies yet again because I can’t move.

I’m wondering how common this is - how many of us are dealing with this? As GP time is under more pressure and we see different doctors more often, etc etc, how many people have shitty quality of life for reasons unknown?

I don’t want to go on like this any more, especially when I know I can feel better, I just don’t know why.

Has anyone been through this and come out the other side with answers or an improvement? Is anyone where I am now? How many are struggling on in silence because no one is listening?

I feel like we need to take the idea of this programme and make something for people like me and others like me - no one’s going to be falling over themselves to figure out how to make something like this go away but there could be so many other people with the same issue, I can’t be the only one.

Sammy I have lots of those symptoms too, my resting heart rate is rarely below 100! I have palpitations a lot too, my skin is very dry and I bruise like a peach. I get frequent heartburn/reflux for no obvious reason. I have lots of scars, and I'm covered in stretch marks even though I didn't put on a huge amount of weight in pregnancy. Most noticeable are the scars where I've had minor surgery and they didn't heal well at all, they look like they've got a little layer of pink tissue paper where skin should be!
I also get frequent tension headaches, but I convinced myself it's because I grind my teeth in my sleep. I'm thinking more and more that it all fits with EDS, especially when you consider the hypermobility, but I've got no idea how to go about getting a diagnosis. I've only been at this surgery for a year as we moved house, but I see a different doctor nearly every time I'm there so there's no one who could really join up the dots without a lengthy discussion about past history, symptoms etc.

I take raw thyroid, I buy it online from America the natural sources brand. I take 2 a day sometimes one a day and the exhaustion comes back if I stop. Works out at £9 a month. I can work part time now not back to myself yet but better than I was.

Gave up going to the GP after years of being dismissed.

I was screened for eds with Dr Leema Robert's at St Thomases. I
had a lot of symptoms you describe. Also v hypermobile and I had a heart attack age age 39.
After a physical exam she said- no you dont have it.
She diagnosed me with Joint Hypermobility Disorder.
Basically I have to keep really hydrated as it helps with energy and dizziness.
Also, doing strength training was recommended, and it has been amazing for a boost. Low impact exercise like nordic walking also helpful.
Eating well, self care basically.
My daughter also gets muscles fatigue easily, often generally not feeling well.
But I seriously believe exercise is the key

(And anti depressants I'm sure they help a bit)

mitebite are you anywhere near London? My DD was diagnosed with EDS by a rheumatologist at the National Orthopaedic Hospital in Stanmore as she lived in London at the time. I asked for a referral to same department there even though I live in Yorkshire and was also diagnosed there.

@PeoplesFrontOfJudith
I really urge you to look into SIBO- Small Intestinal Bacterial Overgrowth.

80% of people diagnosed with IBS have SIBO.

It’s a condition where there are too many bacteria in the small intestine. These bacteria produces gasses which affect the body.

There are different types:
Hydrogen Dominant- associated with diarrhoea and weight loss
Methane Dominant- associated with constipation and weight gain
Hydrogen Sulphide Dominant- associated with diarrhoea and weight loss.
It’s also possible to have a mix of two or more of the above and have alternating diarrhoea and constipation.

Brain fog, chronic fatigue, gastric problems, sleep disturbance, anxiety, rosacea, joint pain are all possible symptoms.

There are treatments that may clear the SIBO or help you manage it. There are also diets that help reduce symptoms and make the condition manageable.

The two people I would particularly urge you to read about are
Dr Mark Pimental- Gastroenterologist and researcher. Interestingly, he is married to a endocrinologist and they have collaborated on research linking PCOS, IBS, Diabetes and SIBO
Dr Alison Siebecker- Naturopathic Doctor who has pioneered natural treatments for SIBO

Here is a link to Dr Siebecker’s website:
www.siboinfo.com/

Here are links to interviews with Dr Pimental I thought would really help you:
Believing IBS is a disease of anxious nervous women is antiquated and wrong
Married to the Microbiome
chriskresser.com/sibo-update-an-interview-with-dr-mark-pimentel/

There is a lot of information starting to come through about this. It’s really a fast emerging field that is starting to be taken seriously.

I’m not going to pretend that the NHS is up to speed on this. But there are some paths to proper treatment in the UK, usually private, via nutritionists. My new GP did have some awareness of the situation and is open to new research I point her in the direction of.

There are also lots of dietary and supplementary strategies that make life a lot better prior to proper treatment.

There is hope and there is treatment. The field is progressing fast.

The treatments fall into:

1. Antibiotics
2. Herbal anti-microbial
3. Elemental Diet

There are other therapies which can be useful to help address underlying causes.

Here is a link to the Reddit SIBO group. The first post stickies at the top is a really useful summary:

www.reddit.com/r/SIBO/

OP - and any others struggling - were you by any chance prescribed an antibiotic in the flouroquinolone class, so ciprofloxacin, levofloxacin or anything like that?

Yes. I spent 8 years in and out the doctors with constant infections and illness. Fifty plus blood tests and all "normal"
I went to the GP again with night sweats and she did more bloods. I got a call from her saying I needed to go haematology urgently and the consultant would be waiting
I was neutropenic and not a little bit, severely low. I was diagnosed immediately and then had bloods sent off which revealed I kill off my own neutrophils
I nearly lost my job due to the amount of sickness, and once I was diagnosed and started on injections I realised my usual "cold" was not normal!

I had symptoms which I won't go into (as they're embarrassing) but which were minimised by my GP service for years and I was told I had IBS. Eventually I was diagnosed with a fibroid the size of a 7 month pregnancy. By that stage, only a hysterectomy would shift it. My ''IBS'' miraculously resolved itself. To this day, I believe the fibroid was pressing on something causing my symptoms (scans etc had already showed the fibroid had shifted my uterus all over the place and it was definitely pressing on my bladder.)

Whatnotwot I'm in Suffolk but London is easy enough to get to. I don't drive but trains are easy, and my DMum lives there so can stay the night before if an early appt. I'm currently under the allergy and difficult asthma specialists at Addenbrookes and its a nightmare to get to, DH has to take a day off work to drive me there.

So how do I go about asking for a referral to be screened for EDS? Should I just come straight out with it and say 'my symptoms all fit this, and in the absence of any other diagnosis I'd like to be referred?'
And realistically, if I were to be diagnosed, is there any real treatment? I only work part time now, and struggle with that but we are in a serious financial hole and I need to be able to work full time. I want to feel better.

My DMum has had parathyroid issues for the last 10 years, and has had 3 of them removed. They're talking about removing her 4th, which has a benign tumour on it, so she would need calcium supplementation for life. I was tested a few years ago and it was fine, but I'm wondering whether to ask for another test to be sure it's not that. I know it can be hereditary and I think they're also looking into genetic testing to see if my mum has MEN, which would make it more likely that DD and I would get it too. It would explain a lot of things, but the last negative test 2 years ago means my GP is reluctant to test again.

Actually when I think about it, a lot of my symptoms fit with Cushings, which can be a symptom of Men, but then I also have frequent high doses of steroids which can also cause it. All the weight I've put on has been on my face, upper back and stomach which is classic Cushings. Bruising easily, stretch marks and fatigue are also Cushings symptoms so maybe I need to be looking into that too.

mitebite I think it’s fine to ask your GP for a referral on the basis that your symptoms fit EDS and i would like to be assessed at The National Orthopaedic Clinic as they are one of the few centres properly able to diagnose the condition.

It is definitely about managing the condition if you are found to have it but I think it’s helpful as physio, Pilates, podiatry, occupational therapy, pain management can all be helpful. For me having a diagnosis helped psychologically too as I knew it wasn’t all in my mind and that there was a reason behind such a weird and wonderful and seemingly unrelated set of signs and symptoms going right back to childhood.

It’s allowed me to be kinder to myself rather than perpetually fighting it on the basis that there’s ‘nothing that has been found to be the matter’ iykwim. It also means I can explain to dentists/doctors why normal doses of local anaesthetic dont work properly or why painkillers do absolutely bugger all and they can work with that.

There may be benefits or travel passes you are entitled to claim if you do get a diagnosis as well.

Whatnotwot I didn't know that about anaesthetic and EDS. When I had DD the epidural didn't work at all to begin with, and when it eventually kicked in I only felt it down one side, they took me into theatre after a while as DD was distressed, they were about to give me a general but then suddenly I needed to push and DD was born a few minutes after. Also I've had a few moles removed and they always have to double up on the local because I can still feel it. Not had a filling yet, and I think I need one so totally dreading it in case they don't numb me properly.

mitebite yes it’s totally part of EDS that you need industrial quantities of local anaesthetic and most painkillers don’t have any effect. It does sound likely that you have EDS. Even before I had a diagnosis I told my dentist that I needed as much local as he was allowed to give and explained why. He was always really good about it so I’d definitely mention it if you do need work doing.

I am going to Prof Studd's Clinic soon and it's definitely not £150 now! It's £350 plus considerable extras for bloods scans and prescriptions. But it really sounds hormone related to me. Good luck

I've read this thread with great interest. I have a dd (aged 15)who sounds very similar to @PeoplesFrontOfJudith's dd. My dd was pretty healthy at primary school but since starting secondary school she has developed a large number of different health issues. Her main issue is that she gets tired really easily. I wouldn't really describe this as CFS as she's normally okay in the holidays but she really struggles in term time. She can cope with going to school but rarely does any homework on weekday evenings as she's just too tired. We've had a lovely chilled out summer holiday and I'm absolutely dreading the start of Year 11 next week!

In addition to fatigue, she also seems to have very low immunity and will always catch whatever is going around. She also has IBS, and has to take Movicol every day to keep her bowels moving. She was recently tested for food intolerances using the York test and the results showed an intolerance/sensitivity to 54 different foods! She is now on a yeast and diary free diet but she still lacks energy and her IBS doesn't seem to have improved greatly. She also struggles to fall asleep and takes Melatonin during term time so she can get up in the morning

She's had numerous blood tests done over the last 4 years and they've all come back as normal, so I'm really at my wits end as to what else we can do. I'm very interested in reading the posts about SIBO, this is definitely the next thing I'm going to investigate. If anyone has any other ideas, do let me know!

Whatnotwot just so I don't sound like a complete div when I go to the GP, how do you pronounce it? Is it Ellers Danloss? Or Eelers? The more I read, the more it fits!

@MaxNormal, why the question about cipro? One of my children had ir regularly as a toddler and he has suffered since (now a teen). Tell us what you know!

Similar to you op, I have been diagnosed with fibromyalgia. I have had b12 injections and high doses of vitamin d but nothing has improved it. I've tried everything that has been recommended and nothing has worked. Are you on any medication? When I was on cymbalta my symptoms were much worse, I had terrible sweating, palpitations, exhaustion and breathlessness. I've looked into EDS also but like you wasn't certain if I met the criteria. I don't have the energy to keep trying and the depression that hits when treatments don't work is breaking me. I'm waiting to see a rhuemotogist and pain management but honestly I've tried everything so don't know what they can do. Can I ask who diagnosis EDS?

Mitebite I think it’s Ellers Danloss. Well that’s how I say it and no ones looked at me funny or doesn’t have a clue what I’m on about. It’s amazing how many signs and symptoms of it there are which I think must make it hard for GPs and specialists in different disciplines to link together. So for years I’d end up in minor injuries with a bad sprain or dislocated shoulder then at the GP with really severe constipation or tendinitis. Then the dentist picks up osteopaenia from an X-ray and a scan picks up ‘big, baggy kidneys’! Just loads and loads of things from one end of the body to the other.

voila212 I was diagnosed by Dr Mittal at the National Orthopaedic Hospital in Stanmore but I think there are other hospitals where there are rheumatologists and/or hypermobility services that can diagnose and manage. If you go to the Ehlers Danlos Society UK website there’s info on how to get a diagnosis and which hospitals specialise in it. I don’t know how to do links on here.

Thanks whatsnotwot, I will have a look.

I am not an expert by any means, and have not read the whole thread so unsure if it's been mentioned, but could it be an iodine deficiency? Not sure if it covers all the symptoms but it covers a lot of them. And would be an easy first step to try and see if it helps. I hope you get to the bottom of it.

www.healthline.com/nutrition/iodine-deficiency-symptoms#section4

www.amazon.co.uk/Iodine-Why-Need-David-Brownstein/dp/0966088239?tag=mumsnetforu03-21

www.healthleadsuk.com/lugols-iodine-12-percent-solution-30ml.html

@Humdrumdumdumdum - where do you get that and what is the product name? I find levothyroxine deals with some of my hypothyroid symptoms, but there are periods of time when it's just not enough.

@SinkGirl - you can get briefly hyperthyroid befire your body settles into subclinical hypothyroidism, you need another blood test. Every GP will tell you that your thyroid level remains the same at different times. This is not true, for obscure reasons I had my bloods done twice in one day - in the morning when I wasn't bad it wasn't even borderline, in the afternoon when I was dizzy and shattered my thyroid played up nicely for the blood test. So, get the form and go to a walk-in at a time when you are actually struggling to move. It's so hard, but it's what you have to do to be medicated. I found it so hard to get medicated for my thyroid when it was playing up for over a decade; one horrendous GP offered me talking therapy to discuss my upset that despite huge family history and nearly every thyroid symptom they wouldn't medicate borderline. Another put me straight onto a dangerously high dose and then took me off it when it made me unwell (equally dangerous according to shocked endocrinologist when I was pregnant later and medicated). Now I'm "correctly" medicated since pregnancy on levothyroxine it's much better. The main issue I feel is that doctors are insistent that symptoms and thyroid status are the same at all times; in my experience they are highly variable and at some future time I expect people will be doing finger prick tests to find that today they need 200mcg when yesterday was only 75mcg, then back to 75mcg again. Don't forget you could have two things wrong with you; get everything checked out until you feel great. And thanks for starting the thread. I'll put my own "diagnose me, GPs won't" below.