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?

Are you managing to work?

Im already under the long covid clinic - I can’t say they’ve been massively helpful.
They just tell me to rest.

In many areas the wait is immense. Ours has a wait of about 2 years

Yes, but I'm mainly desk based and can work from home. My boss is understanding, I'm lucky. But I'm definitely not working at full speed. My brain just doesn't work like it used to. And I get migraines now so often just have to take the day off.

It's shit. I worry all the time that I'll be called out on my less than great performance.

I wasn't like this before. I'm sorry this is happening to you too.

OP completely understand why you don't feel lucky.
It's just so unusual/unheard of to be offered monthly injections that it makes me feel that you are lucky that your GP is going this far.
How long have you been on the monthly ones ?

They don’t have time to care; it’s not their fault, they’re so overstretched. The GP has suggested two things to try, what more do you want? And what are you doing to help yourself-exercise, diet, sleep, support group, etc. surely you don’t want long term painkillers that is so so bad for you

It's not realistic to expect them to actually care. You're a patient and this is their job, they don't know you.

They should obviously explain everything thoroughly and be polite. I've found the only way to get thorough and polite medical care is to pay privately which obviously we shouldn't have to do and it wouldn't be an option for everyone.

I remember a retired GP telling me that they were told to keep NHS referral numbers down and not to refer anyone for certain things, until the patient had made at leat 4 appointments with the GP about the same issue. Shocking really.

In a very simplified way, a rheumatology consultant told me is that the ‘pain’ is caused because that area of the brain is overactive/ stimulated so there is no actual physical pain that a painkiller would treat but it is a brain issue (I don’t mean this to come across as being all in your head)! So people often find painkillers won’t work and they aren’t very effective.

I Hope you find a solution that helps you OP.

I wonder if the covid jab is worth having this year to see if helpful 😢

I’ve always been so worried of a flare up

I had a covid booster last week because my dh is immunocompromised. So far I haven't had a flare up but it hasn't made any difference to my symptoms either. It's only been a week though so who knows. I got the flu jab at the same time so I did feel a bit tired for a couple of days.

I desperately don't want to catch covid again so I went ahead and had the booster. I would have done it anyway for dh but I am doing it for me too.

I'm quite sceptical about this idea but I did subscribe to the curable app for a while, I also have arthritis.

I read an article about people with back pain and basically it said that in some cases patients can have quite severe damage to the discs in their spines but not feel much pain, while others have very little damage but feel lots of pain. So the pain is not necessarily linked to the amount of physical damage. That must mean that there's something else going on, maybe that's in the brain?

After that I did read a bit more about "pain is in the brain" and feel like maybe if I tried hard enough it might make a difference? But I didn't put enough effort in. I wouldn't completely dismiss the idea though, really I should try again.

Fibromyalgia isn't a disorder, it's a syndrome. That's why it's effects are unpredictable person to person.

OP, the GP has suggested all she can, assuming you've had bloodwork. Monthly B12 is a pretty good offer, see how it works out. Try another antidepressant and exercise. I know they sound like glib suggestions, but exercise really does help.

GPs have to be careful with prescribing pain meds. You're not asking for it for a short term condition, like an ear infection etc. What is your GP to do when you can no longer function without meds, but need higher and higher doses?

@TiredOfCovid, what you've described in terms of activity and then feeling awful is what one of my counsellors called 'boom and bust'. I'm not sure, but think I might have mentioned the spoon theory - if I haven't, have a look at it. It's all about grading activities in units of energy and then not doing x,y or z if you know that will be over your limit. I too recognise the lovely feeling of finally having the energy to do lots, but as you say, you end up paying for it in the long run.
The other thing (again, sorry if I'm repeating myself - fibro brain!) is to pay attention to your energy and pain meters. It the former gets below 50%, or the latter gets above 50%, it's time to stop. It might not be what you want at the time, but it really helps to keep your fatigue and mood stable as you are allowing for your own limitations.
It's not great, but at least makes for a life where you can avoid rock bottom most of the time.

Thank you
I do understand all of this but this means I physically can’t hold down a job 😢

‘

I understand that everyone is different

Have you tried something which is more hands on & a regular provider would give you progress updates

Massage
Reiki
Chiropractor
Crystal healing
Yoga
Acupuncture

I do hold down a pretty high-pressured full-time job, but my circumstances are probably different to yours, plus I have a good medication regime in place.
Try to find a GP who isn't so closed to helping you cope with your symptoms. It really helps (and also affirms that you are not making this all up and your illness is genuine).
Good luck.

I heard today that a friend of a friend uses cannabis for her fibromyalgia.

This was recommended to me by a doctor doing a minor op on my hand but I can't get hold of it. Where do you get it?

My LHB doesn't have a Pain Clinic. I was sent to the next county over, had a session then was refused treatment as the LHB wasn't paying their bills.

Have you tried hypnotherapy OP? Two of my friends had chronic pain and inflammatory disease and found it helped - didn’t cure - but helped managing pain.

I was diagnosed with fibromyalgia 5 years ago now and eventually had to give up work. I now take Amitriptyline and setriline and it definitely turns down the pain. My biggest problem is the overwhelming fatigue, some days I can’t even hold my own body weight up, even struggling to lift phone to my ear, it like wearing a very heavy suit of armour 🫤 I get it, I really do, I’m tired of being tired and sore and constantly letting people down, sometimes I think people don’t actually believe me but your doctor is right, apart from antidepressants there’s very little they can do and part of the healing is accepting your diagnosis. You need to find ways balance between rest and work. I’m not saying it’s easy but I know what you’re going through.

I’ve just recently started a whole food plant based diet. I’m pre diabetic and need to lose 5 stone but a a lot of people have had success reversing chronic pain and fatigue 💛

So sorry to hear you had an awful appointment. Sending hugs. Have you seen the below? Might be worth a read.

BBC News - 'Long Covid triggered our MCAS, but doctors didn't believe us'
https://www.bbc.co.uk/news/uk-england-london-66998448

Long Covid often causes Post Exertional Malaise after going above your activity threshold. PEM can last days, weeks, months and it sounds like what you are describing. There are support groups on Facebook with people who are in a similar situation with LC (there are lots of us) and some have advice about how to manage the symptoms and treatments that may help - like pacing with a smart watch, low dose naltrexone, nicotine patches, etc.

Sorry just seen this.
Look up LDN Research Trust. Dickson Pharmacy in Glasgow can prescribe LDN.