To expect my GP to care just a tiny bit how unwell I am??

[TiredOfCovid]

I’m mid 30s and have been suffering with long covid / b12 issues and now possibly fibromyalgia for 2 years.

The GPs just don’t seem to care.

I cried in the room today saying how much pain I am in, that I’m going to lose my job if I take any more time off sick, that I’ve got children I need to look after and there must be something that can be done - medication, anything?

She told me she had a stressful morning as couldn’t get her computer to work, said sometimes antidepressants help with long covid, offered no explanation of why my body isn’t absorbing b12 normally and said I’ll have to have injections monthly for the rest of my life and sent me on my way.

NO compassion at all - surely they should care just a tiny bit / pretend to?

@2023Enfys chronic b12 deficiency can be caused by coeliac disease, request to be tested. Don't reduce gluten until after thorough testing no matter how much you think you might have coeliac disease, as doing so will give a false negative.

GPs here a lot of 'tired all the time' or people complaining of chronic pain, sometimes you need to break it down for them.

Pay attention to patterns & cause & effect. Make notes of these and clearly report back to your GP. Eg, how much activity leaves you struggling? What does it prevent you from doing? How long does it take to recover from each thing and what do you have to do in order to recover?

Keep a sleep, exercise & food diary. Telling your gp that you experience these symptoms in response to getting consistent and good rest, earing well and regular exercise etc will answer half their questions for them & show that what you say is true and not a generalisation. We can all say we take care of these things but until we track them consistently we don't always realise how wrong we can be.

Keeping a diary will help you spot patterns and also make changes that could help.

You need a specific and methodical approach that your gp can't argue with or deny that there is an issue

I'm going to say GPs are human too and can have bad days. It sounds like your doctor had IT issues and who knows what else they had dealt with prior to your appointment.

There is nothing they can offer you for Fibromyalgia. I imagine that is another stressful situation to have someone crying in front of you in pain and you can't cure them. I imagine they do dissociate to get through their day.

I'd just not take it personal. It's not good for you, but not good for them either. It's a no win situation.

On another note, my fibro started at 37. I've started HRT at 44 and it's vanished! Wtf. I know wrestling for hrt in your 30s might not be something you're up to if your exhausted, but I just wanted to let you know that anecdotal experience. Maybe have a look into perimenopausal symptoms and see if it relates to your experience.

Thanks for so many replies
Can I just add that the only reason I was offered monthly b12 injections is because the pain didn’t get any better so they put it down to that but it’s made no difference
The antidepressant is fluoxetine 20mg and is meant to help with the pain - it’s not the treat depression / mental health issues
I know that a GP wouldn’t have time / be best placed to assist with mental health.
This isn’t mental health - its physical excruciating pain and exhaustion that leaves me bed bound for weeks to recover.
Im on the verge of losing my job and just want to know what’s causing all of this or if there’s anything at all that I could be doing to get better but it looks as if there isn’t 😢

Keep a diary like I said and when you present the results to the gp request a referral to an ME clinic

Thank you I’ll do this
It’s just so hard as for a week or so I’ll be relatively normal, able to go to work fine, dog walks etc and then suddenly I can’t move for at least 2 weeks.
Its soul destroying.

Anyone with B12/malabsorption issues please get tested for Coeliac disease. It is really under diagnosed especially if you don't have any of the traditional gut symptoms and can be responsible for a whole host of symptoms. The only thing that prompted my GP to test was low b12, iron, calcium levels.

Interesting. Log your symptoms alongside your menstrual cycle. Estrogen and Progesterone play a major part in energy levels and immune system.

Unfortunately you've got to do most of the leg work in finding out what helps. Doctors simply don't have the resources to look deeply into every individual patient. It sucks, but it is the cold harsh truth.

TheYearOfSmallThings · Yesterday 19:25

In fairness there is something that can be done - antidepressants and B12 injections. That is what she can offer, and she offered it.

It would be nice to feel that medical staff genuinely care, but I have never felt that they do, and I imagine they would be paralysed and unable to do their jobs if they did. That are generally worse with chronic conditions too.

I think @TheYearOfSmallThings is right.
And I also agree that you would be exceptionally lucky if you were really to get B12 every month.
But sympathy, yes it's shit to be chronically ill..

Im not sure why it’s seen to be lucky to have monthly b12 injections if they are having absolutely no effect on my health anyway?
Honestly there is NO change - not even that few days of feeling amazing like some people report
This is what made me think there must be something more going on that just the b12 deficiency to start with

Because I'm diagnosed as not absorbing B12 and I have horrible symptoms from it and even I can't get them, someone else with actual pernicious anaemia- a condition that used to lead to death when untreated- cannot get monthly injections!

If you have the money see a doctor privately and you will get more time and attention; the NHS simply doesn't give doctors the time to be able to spend time sympathising or being emotional - this is the harsh truth. It's not the doctor's fault but the fault of the system.

GPs do not see their job in any way whatsoever as requiring any kind of compassion.
I am not saying you don't deserve compassion OP, I just honestly think you are looking for it in the wrong place. I'd say the same thing about NHS hospitals, and I say that after having had some pretty serious treatment from NHS hospitals (good treatment but not what I would call compassionate) in my time.
You are literally just a number to them.

If you have the money see a doctor privately and you will get more time and attention

This is true but...will they actually care more? That is what the OP is wishing for - that her GP should feel real emotional empathy for her and a personal wish for her to feel better. I am not fully convinced that is available from private GPs either.

Truly, I am so sympathetic to anyone with a chronic health condition, as it is soul destroying at times.

I have a medication induced neurological involuntary movement disorder called tardive dyskinesia that was caused by some prescribed off label antipsychotic, and I've had mpre sympathetic reactions from the online Facebook group I'm part of than anyone else. I've also found them to be extremely knowledgeable and compassionate compared to medical professionals, who simply don't understand what I ho through.

I hope you can find a good place to vent online possibly in a forum or on a Facebook group. You will also find better opportunities to get good treatment from private specialists in getting to the bottom of it, as others have said.

Apologies for the typos 😅

This is 2023. For the sake of our job you find an endocrinologist/General physician with an interest in fibro/exhaustion/B12 and pay to get yourself on the optimal regime that can then be prescribed by your NHS GP.

To be fair it's been the case for the whole of my life. My GP didn't even manage to suspect and test for Graves Disease more than 30 years ago.

Ask for (insist on) a referral to pain clinic.

I can’t afford to pay for any extra things right now in case I end up losing my job because I’m unwell so much sadly

OP I'm in an age group ( 70's ) where many people I know and relatives have auto immune conditions and are in need of B 12 injections.
I have never heard of them being offered injections more frequently than every 3 months .
I know a couple of people who are on their knees after 2 months.
Believe us when we say you are lucky to be offered them monthly .

@tiredofcovid the investment will help you to keep your job.

I understand why it seems lucky but if they’re having NO benefit, can you understand why it doesn’t feel lucky to me?

I don’t have any increase in energy / less pain from the b12 injections at all hence why I’m now under more blood tests looking for fibromyalgia

TiredOfCovid · Today 09:47

I can’t afford to pay for any extra things right now in case I end up losing my job because I’m unwell so much sadly”

You don’t pay for pain clinic, its NHS.

What are your symptoms exactly? Maybe someone will come up with a suggestion.

I will ask for a referral
It just seems sad I’m constantly having to ask for referrals to long covid / pain clinic / osteopaths etc when the GP doesn’t suggest anything really

Symptoms since I contracted covid back in the first round have been :

Generally very unwell even if I just contract a cold / this will turn to tonsillitis needing antibiotics or flu type illness lasting for at least 2 weeks

Overwhelming tiredness after a few days at work / a busy weekend where I physically can’t get out of bed

Extreme pain - pins and needles in hands and feet and more recently face as well as deep muscle pain in my back, legs and arms as if I’ve ran a marathon

l

I've just started taking fluoxetine, I was at my doctor yesterday for the 4th time about long covid symptoms. Infected April 2022.

I agree they're not massively sympathetic but my gp has sent me for 2 chest xrays and ecgs, full blood tests, has now referred me to the chest pain clinic and if that shows nothing will refer me to the long covid clinic. So he is trying. Have you had these tests already?

I sense he's quite frustrated that he can't offer more. But he doesn't have anything else to offer.

He was clear that the anti depressants wouldn't fix anything underlying for me but might make me feel a bit less low about things.

I'm at the point where I'll try anything so I'm giving it a go.

It's really shit @TiredOfCovid

I'm so tired of covid too.