GPs and an update: Hi, Sorry I haven’t... - Fibromyalgia Acti...

Fibromyalgia Action UK
47,644 members59,586 posts

GPs and an update

Sunflower0
Sunflower0

Hi,

Sorry I haven’t posted in a while, and a lot has happened since I have been away. I have had an MRI scan querying MS as I have trouble with numb hands and feet, urinary incontinence, eyesight trouble etc. I finally had a GP who was very helpful and believed me. The MRI was clear bar a small cyst on my brain which does not account for my symptoms. I have left things a while - taking cocodamol , naproxen and duloxetine (all at max dose) but couldn’t cope anymore and so phoned the GP today to discus - all I got from the GP was a website address where I could read about managing my own pain and told that the pain was in my brain. The pain is constant everyday and I worry about how I will be able to go my whole life (being only 20) feeling this way. I’m feeling very fed up today and considering going private.

Gentle hugs

B x

15 Replies
oldestnewest

I feel huge sympathy for you Sunflower. Of course the pain is in your head, all pain is in the head as it's our brain that recognises it. So infuriating to be told that. Mostly everyone on this forum will identify with that feeling and how sometimes it makes you feel hopeless but use the times it makes you angry for strength. And most of us end up down that well trodden route of "Pain management" clinics. Keep standing up for yourself figuratively speaking of course. Research and knew all you can about your condition so you can hold your own in discussions with the medical world . Take care of yourself, don't be hard on yourself, allow yourself to have bad days xxxx

Hi,

Thanks very much for your kind words - it’s definitely about persistence with most GPs.

Take care of yourself.

B

Xxx

It's hard sweetheart I know. I was once told that "people like you are never happy" when I disagreed with a GP. "People like you" refer to my thyroid problem at the time. And sometimes "people like him" by that I mean ignorant bigoted misogynist, leave you feeling you just haven't got it in you to fight. That's fine too, because then you go and rest, gather yourself and thoughts and when ready then go state your case. And every now and then you will get a victory, even the small ones count and that gives you the strength for the next time. We all need validation and recognition. In my case it was when a doctor would acknowledge my condition and or pain, even a couple of times when I received an apology (albeit a reluctant one 😉) that they had been mistaken (they never actually say wrong lol). Moments like that spur you on.

I'm acknowledging to you, your pain, your worries, your condition. Lots of people on these forums acknowledge you too sweetheart. Xxxx

Thank you so much.

Please take care

Xxxx

Hi

I would check back with GP regarding medication, Naproxen may not work for you, it didn't for me, at all.

Co-codomol comes in different strengths, I use 15/500 only when I have to but you can get 30/500 if you can deal with the codeine.

If your GP is unhelpful is there another GP you could see in your surgery?

We are all different, what works well for one person doesn't necessarily work for another, keep at them!

Let us know how you get on 🤗

Hi!

Thanks for your message.

I will definitely ask about alternatives to naproxen. I am on full Strength cocodamol at the moment and doesn’t seem to be touching the pain - not that I want to be on very strong painkillers but every GP I have ever seen says “we don’t want to give you anything stronger as you are only 20” which is frustrating and pain in pain. I understand they don’t want me to become hooked on medication but I feel they are writing me off completely.

I’ve tried most of the GPS in my surgery and all the helpful ones seem to have left. - I have booked a telephone consultation with a private doctor for this afternoon to see whether that will give me a better outcome.

Thanks very much again for your kind message.

B x

Yeah I know what you mean, it's a nightmare! Hope you get some help soon.

Take Care & Stay Safe x

Sunflower..maybe ask if they would add the lowest dose pain patch to your meds like a Butrans 5...especially if your in pain around the clock..This is lowdose for this med and seems harsh not to try.Yes its morphine related but very low hourly continuous drip if u like that can last 7 days if your lucky..change weekly..If it doesnt suit you we youve tried havnt you....x

Hi don't give up keep pushing till you find the answer you know your body I know how you feel I'm still trying to get an answer for my self I started Oct 18 going back to rumatolagie for a second consolidation next week due to covid its a telephone conversation so not happy as its taken six months for my appointment and this is to do with hands and feet. so don't give up it could b any thing so make sure your gp explore all avenues it takes time good luck xx

Sunflower0
Sunflower0
in reply to bourne

Thanks very much.

I hope you get some answers soon.

Good luck xx

YASMINTINA
YASMINTINAFMA UK Volunteer

Hello there, ask for another call back from your doctor, don’t be robbed off, you sound like you are on a mixture of tablets and your still struggling, if surgeries were operating normally I would have booked an appointment and took your mum or older family member with you for some back up and support. I agree you are young and you want to be able to move forward with your life as comfortable as you can xxxx

Ask for referral to pain clinic they may be able to help. Sadly analgesia doesnt always work for fibro pains.

Has any Dr explained to you about the cyst? Many doctors shrug off issues that they don't feel the need to discuss with you! I would ask for the opinion of a neurologist to get an explanation. At the moment you won't get a referral, but your GP could send the images to a neurologist and the neurologist could send you a letter explaining how the cyst on your brain might or might not affect you. We all have abnormalities in our bodies that have no effect on our health (so I've been told by doctors) and the cyst might be one of those harmless abnormalities. I think you need reassurance that the cyst is or is not causing your symptoms. If a GP tells you that it's not necessary to send your info to a neurologist, you have to decide what to do next. If it were me I wouldn't take no for an answer, but I can be a pain in the a***☺ with doctors! It depends what you need to reassure you that the cyst on your brain is something or nothing to worry about. Fibro is very complex and affects all of us in so many different ways. As you are so young you have the opportunity and time to make the best of your life. You might have to be very disciplined in managing your health in order to live a full life with minimal pain. Stay optimistic and positive and you can manage anything that life throws at you. Good luck and take care.

Hi, I'm really sorry to hear about your experience with your GP, I am lucky in that I have a good one. There are good understanding doctors out there, perhaps you could speak to a different one or change practice? Can you take someone with you as backup/ join in the telephone conversation ? I had a real melt down on Tuesday so depressed thought I was losing the plot! Spoke to nurse practitioner who was very helpful and calming so perhaps that's another Avenue to try - it's all so hard when you're struggling anyway, I know that. I have Rheumatoid arthritis and take Tramadol for that but it doesn't touch the fibromyalgia so consultant put me on amitriptyline and that helps. Don't be put off stay strong and keep going until you get help. Love and hugs xx

The pain may be in your 'brain' (physically, as FM impacts all your nerves) but not only in your head...... I was lucky to have my second ATOS assessment done by a semi-retired consultant who knew all about FM. He asked me about incontinence, which I thought was just a post-menopausal thing, but he said it was connected to FM. In fact, anything to do with pain in the nerve linings; such as blurred eyesight, weirdly huge headaches, etc., can all be put down to FM. Sorry this is such a bad thing to have, but the more you find out about your condition, I find, the less frightening it becomes.

Also, look at the difference between 'pain' and 'nociception'; the perception of pain. You might end up being able to explain to your GP a bit more than he knows about what FM means for your experience of pain and your body.

Good luck with it all,

e-hugs, dee x

You may also like...