Friend’s mystery ill health

There used to be a department in our local hospital that ran vague symptoms clinics.

Sadly though it's gone now.

Many people get diagnosed with fibromyalgia or CFS when they have some actual condition that could be treated.

There is something called hysterical conversion.

I am not a clinician but as far as I am aware it is is when getting upset results in physical symptoms, from little things like muscles tensing if someone is nasty to you, or having a vomiting feeling and wretching wind up if you have just had someone cold call at the door and then started shouting at you when you politely declined his offer to clear your roof gutters and you shut the window and felt, well, sickened and upset.

Has you friend had panic attacks, the first one "out of the blue" and later ones as a result of a slight trigger, such as bright lighting in a supermarket?

Sometimes the treatment favoured by clinicians is immersion in the problem, but in some people that makes it worse, it is better for them to be just signed off sick for a month, renewed for another month and they just potter around home and then sometimes the stress level decreases and they get better, as if the brain needs idle time so as to sort things out without needing to deal with further input.

It’s interesting that a neurologist has suggested she see a psychiatrist. Has she done that, and if so with what result? I don’t wish to be unkind, but has Munchausen Syndrome been suggested? As I’m sure you know, this causes the sufferer to manufacture a whole raft of symptoms in order to gain attention. I wouldn’t for a moment be so cruel as to suggest that OP’s friend is a deliberate attention seeker, but is it possible that this is why referral to a psychiatrist was suggested? (Sorry about all these ‘suggesteds’.) Please don’t think I am being unfeeling in putting this forward, but it does cause numerous symptoms to be reported to doctors which can’t be diagnosed as they exist only in the mind of the sufferer.

My daughter works as a “healer” with people who have suffered trauma. She is a firm believer that trauma can cause physical symptoms. She recommende a couple of books. One is HEAL, The other is When the body says No. sorry don’t know the authors offhand but they’d come up on Amazon or google

I have fibromyalgia, and there is no test that picks that up. For years doctors have said this was all in your head, particularly as symptoms are numerous and not everyone gets the same. Thankfully this condition is taken more seriously now and research suggests it is an auto immune disease.
I am not suggesting your friend has fibromyalgia, but using it as an example of lack of knowledge and joined up thinking can miss a diagnosis.
There is no holistic approach within the NHS, so you end up going to one specialist who draws a blank, then you have to start the whole process with another one.
Perhaps you could sit with your friend and list all the symptoms no matter how obscure. Even to convince her that they are real and not in her head.
I hope she finds the answer and can recover.

Oh, the poor lady. That sounds terrible.
You sound like a lovely friend, she is fortunate to have you

My friend has been diagnosed with FND- Functional Neurological Disorder ( I think that’s the terminology).

Persistent headaches, dizziness, crab like walking, just generally unwell. She has had blood tests, scans, consultant examinations. It seems to be a generic diagnosis that covers this type of condition.

She’s had a lot of stress in the past few years, sick DH who died a couple of years ago, work and business hassle, property problems.

She just wants to feel ‘normal ‘ again.

Not any real treatment to offer it seems.

Further to Jane’s post, it’s worth bearing in mind that a psychiatrist deals with the more medical and pharmaceutical side of things, as opposed to a psychologist.

It might be worth exploring the psychiatry route though. My friend has a lot of auto immune stuff going on and developed a tremor and she had loads of tests and when she was referred to the psychiatrist, she had PTSD amongst other things - also triggered by a recent trauma but the physical side was being caused by past trauma. It;s ongoing though, I can't tell you she is cured it is horrible watching someone deteriorate, so thank you for being such a good friend to her

What I really cannot fathom is the attitude problem. She says she has no faith in doctors - yet constantly demands all these tests. Unfortunately, help with mental health is only offered to those who demand it - after a long wait.

A test for coeliac disease is often done routinely, but it might be worth checking that it has been done.

We have not found that to be the case
You must have a very enlightened GP, ElderlyPerson

My friend has been 'ill' for decades. She's had every test, scan and investigation available - on the NHS and privately. They show nothing, she's never reassured, so always wonders what 'it' can be.

I'm 99% sure that it's all in her head. Still, her firm belief in her illness being physical means that her body is out of shape, her medical anxiety has physical symptoms too - with poor sleep, digestion and concentration. Such a waste of a life!

I haven't read the whole thread so someone may have mentioned this already: if your friend's neurologist, NQ, says she needs to see a psychiatrist, has she not had a referral to a psychiatrist?

Thank you all for your replies. She is able to pay privately to see different specialists and she’s had scans too. I think she’s so worn out now she’s not in any position to take any positive action -like writing letters etc. She and her DH-who is not on top form himself-are just surviving.
She had a traumatic incident years ago which weighs heavily on her so it just seems to get put onto psychiatric problems but, as she says herself, she has lots of physical symptoms too which are new to her and getting worse.

Another possibility is her sodium levels.

Sometimes issues with the pituitary gland can cause the body to think it has too much sodium and dunp it in urine, resulting in low sodium levels.

So asking if sodium levels have been checked is another one that she might consider adding to the list.

I suppose that with the best will in the world a General Practitioner is having to deal with many patients all the time, so maybe going on with a wriiten out list of questions might be very welcome.

On the question about getting something done. If she does come up against slow moving bureaucracy, something someone told me years ago about getting something done by slow town hall bureaucracy that could possibly be useful with any public body.

Write a letter to the Chief Executive and send it recorded delivery. That way they cannot deny having received it. I was told that because of that, such bodies log specially each recorded delivery item and thoroughly document what was done about it so that if, hypothetically and just in case, ultimately a Member of Parliament writes to a Minister on behalf of his or her constituent enclosing proof that a letter was received and Whitehall civil servants want to know what has been done as the Minister needs to reply to a question from a Member of Parliament that they avoid being seen as obviously incompetent.

Surely the doctors are missing something and need to carry on investigations. Has she had scans? It must be horribly frustrating for her that all they can suggest is to see a psychiatrist.
She could see a private GP but the trouble there is that the minute they ask for tests the bill would soar.

Newquay she has every right to change doctors, sometimes a fresh mind can make all the difference although if she’s seen numerous ologists it does sound as if she has had a lot of help and the doctor has been trying

There are many hidden things that can take numerous tests to discover We all think doctors know everything but they don’t they are not gods
All vitamin deficiencies can cause a variety of symptoms but unless they are asked for in a blood test they don’t ‘just show up’ My friend was having a blood test for one health problem and while looking to see if her Vit D levels were low they found that they were so high she was on the verge of poisoning herself ( her daughter had bought her some VitD as she’d read that many people are under in this climate and she’d bought the strongest she could !!!)
Thyroid and diabetes can cause many varied problem until they are discovered other illnesses that can cause vague symptoms without pointing to anything specific are lupus, ME, Lyme disease, allergies etc or it could as the doctor is beginning to think be psychological

You don’t give any hints as to what problems she is suffering so there can’t really be much help here

I remember the programme you mean it was very interesting

MissAdventure

I have just been found to have a vitamin D deficiency (after almost 2 years!) and it was only tested as an afterthought; it isn't included in the usual blood tests.
It hasn't helped me, but it may be worth testing, if it hasn't already been done.

I didn’t know that Vitamin D deficiency wasn’t checked for in the usual blood tests!

I was found to be very vitamin D deficient in January 2020.

My hair had been falling out for around 15 years and was in a terrible state.

As soon as my levels were sorted my hair has grown back.
The blood test was done for something else.
If I hadn’t have found out I’d probably be bald by now.

that link to private blood tests looks interesting. thanks.

and if the neurologist thinks she needs to see a psychiatrist, why can't he refer her to one, or write and ask the GP to do so.
or is the GP refusing to do so ?

could she afford to consult a private GP.

Something that might be worth doing would be to have a consultation with a hospital dietician. This would need a referral from her doctor. Usually face to face but perhaps could be done over the telephone in these pandemic times.

The dietician could assess her diet. Even if she or he finds nothing wrong or missing then at least it eliminates that as far as could be known.

Going back to the original question from the OP, it is possible that the way to get the team approach you mention is that the Clinical Commissioning Group for where your friend lives would arrange it. But I don't know.

www.england.nhs.uk/ccgs/

If your friend contacts the Clinical Commissioning Group for where she lives

www.england.nhs.uk/ccg-details/

she night get help or be advised where to get it, though I suppose she could just be told to contact her doctor.

I looked at a few briefly, they are not all to a standard layout.

If she cannot get anywhere then she could ask her Member of Parliament to try to sort it out for her. MPs have no power as such, but do have access to Ministers and a letter to a Clinical Commissioning Group from an MP asking what can be done for her may well oil the wheels if a gummed up bureaucracy is involved.

Details of her MP can be found here.

members.parliament.uk/

When writing, even if by email, include postal address and postcode as an MP can only act on a personal matter for people in his or her area and they check. No postcode can mean no reply. Her MP is her MP, even if she actively campaigned for someone else.

Parliament is in recess at present for party conferences, but their offices are probably still running, so no need to wait until the recess ends.

I hope this helps.

www.letsgetchecked.co.uk/

You can buy blood tests online from a reputable company such as this, if it would help your friend.
They do vitamin tests.
I do hope the poor woman can get some help.

Newquay

It’s quite a long list; neurologist says she needs a psychiatrist ? whoever she needs she’s not getting them

Where I worked once a lady was having problems, funny headaches, strange feelings. She was worried.

She had been to the doctor. She felt he was treating her as some sort of neurotic woman.

I then suggested she say to him "Are you treating me as if I am a neurotic woman?"

A few days later I was in a library and I asked something and the lady invited me to an area behind the counter, and I noticed a piece of cardboard with, written in marker pen, "Please do not use Mr Sheen in this area". I asked her what that was about. She explained how it affected her. Bingo!

I told my colleague. She asked the cleaning lady. Yes, Mr Sheen. She asked for it not to be used in her office. Her problems went.

Thanks for that Elderlyperson. Trouble is so many different things seem to have been tried and not worked. From being an active woman she’s now in such a state, life is grim for her.
You’d hope wouldn’t you that her GP would have run a battery of tests but it seems not; she just gets shunted, as I said, from one «ologists» to another. It’s like they’re playing pass the parcel with her-it’s so sad.
I will pass on what you said.