LUPUS UK
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Gp appointment

Went to the doctors tonight to see if she could do anything for me from my list, as next hospital appointment is end of March.

I must say sitting here writing this I feel like crying 😢.

I feel like concerns I have are not taken seriously. I can’t deal with this anymore I really can’t.

I just don’t know what to do anymore , I feel like I’m a crazy person who is making up all this worries and fears when I’m not . Why do doctors make you feel like this ? Honestly am upset and so annoyed 😭.

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Lou, bless you. I can totally understand how you feel. I have had some crap appointments in my time and left crying.....It does make you wonder why some I them become doctors, showing little compassion or understanding for their patients feelings and concerns. Would you mind saying what you had asked and what the doctor said? Maybe we can help a little more. I know that you will be replaying the appointment in your head all night and it will play on your mind for a while, but please don’t give up. You’re really not alone. X

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I asked about a few things, some that got sorted ish . So I have dry skin by my eyebrows and face and the cream before weren’t working . So been given a different one to try.

I asked about the naproxen and the kidney failure it could cause. She was like we do blood test all time and check it your be fine. Well actually they don’t do regular blood test so they are not properly checking.

One of my big fears is losing the skills I have like with my hands being able to write and stuff. I’m only 18 had this since I was 15 and I know it will only get worse. She said keep your hands busy. Well that’s doesn’t help with my worry of losing skills. I asked about things like splints for your fingers and she said no your fine. Well I’m not fine as I can see one of my fingers over the last 3 years has slowly moved to one side a bit more. So another 3 years it could be worse.

I’m actually mad at how I’ve been treated all together . Got told I had lupus and arthritis at 15 and basically told to get on with it.

I’m going to write down everything again and when I go in March to the hospital I’m gonna have a right go. 😭😡

I’m tired of fighting this now. I just want to go back to normal

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It’s horrible when you feel you haven’t been taken seriously. I can understand your frustration.

Do write a really good list for your appointment in March and don’t leave the room until you’ve dealt with it all.

How often are your bloods checked? And what are the risks of kidney failure? Low, medium or high?

Is there a different, more understanding GP you can see next time?

I think sometimes our fears do get the better of all of us and we need to take a break, try to take a step back. But it’s definitely a roller coaster that we’d all rather get off.

Take a warm bath tonight or do something else you find relaxing. Deep breaths.

X

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My last hospital appointment was way before Christmas maybe all the back in the summer even longer . I hadn’t had a blood test for the hospital since then. I had one from gp when I first went on naproxen which was a few months ago.

The risk of kidney failure at the moment isn’t great but my fear is if I use the pain killer to much will it increase the risks.

My gp has normally been alright but tonight she was a complete idiot.

When I go in march I’m going to ask about a referral to see a lupus clinic in London maybe . I don’t care if I’ve got to get a train if I can get some proper help.

I’m in bed now finishing the last season of Dexter

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Yes, you’re right, your health is the most important thing, so if you can get a referral to a specialist lupus clinic, go. You take care. X

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Thank you for replying .

It’s one thing my family not understanding and me having to hide my pain and concerns but having a gp upsetting me is another .

Hurry up March !

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I can relate to the family thing, friends too. I am now 4 years post diagnosis and I think my family are nearly there but would probably say my friends are still a little way to go. It all takes so long doesn’t it. X

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I don’t actually have friends. I got diagnosis in Year 11 . I was having problems at the end of year 10 really . Thought I had friends turned out I didn’t x

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Great replies from Wendy but I just wanted to empathise totally Lou.

I have very recently posted a few times about exactly this problem and today I tried to draft a letter to the GP I saw on Tuesday who made me feel like you felt after your appointment.

I’m 55 and if I hadn’t been feeling so ill with cold/ Flu virus I’d have given it back to her straight! But somehow she made me feel so powerless.

Anyway you are so very not on your own in your frustrations and feeling that these people just don’t begin to grasp how it feels to be 18 and constantly battling to try to function normally. She or your rheum should refer you to Occupational Therapy for proper splints and targeted hand exercises. I think that’s what you should be asking for ASAP. I have sought this out for myself through attending an RA group meeting in the hospital and learning that this exists and how to access it.

But anyway I think you do brilliantly and are a proper young Lupus Warrior so spoil yourself rotten tonight please. Tomorrow’s another day. Twitchy x

Ps I find Waitrose Body baby bottom cream is simply the best! Xx

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Thank you .

I just don’t understand why they don’t think are concerns and worries are real. They don’t have to life like this.

I hope you can get sorted your problem with your gp. I saw your post and am going to read it tomorrow !

I wasn’t given any thing like OT until I had to make enquiry myself. Good thing I did as I have been given a bath board to help with washing !

I’m going to sleep now and yes tomorrow is another day.

I try to move on and live in the present ( hard when you constantly replay things in your head )

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I know it’s hard not to go over and over things. I’m freaking out a bit myself because my Sjögren’s means that this cold is forcing me to mouth breathe so I can’t sleep due to dry throat making me feel I’m being strangled. But stupid GP has made me feel that I’m on my own with this now. Not good really but this is probably why A&E are struggling so much. As you say if they addressed our problems better when we see them then we wouldn’t be left with our lists so unticked! X

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Exactly. I’ve come to learn that I’m not entirely crazy , there are others facing the same problems as me . Maybe one of us should become a lupus only gp. We would be so much better to each other than our own docs

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Well I’m too old now Lou so it’s over to you - I know you’d be fab! X

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Ah don’t think I have the brain power for medical school . Barely made it through my GCSE’s 😂

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Ha ha me too but see I’m now hoping to do a PhD as an artist visualising invisible diseases. Find something you love and really believe in and go for it - anything is possible if you want it enough. X

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Well, I could use Dr in front of my name, but best not ask me anything medical 😂

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I'm so sorry you had the miserable kind of appointment Lou. Sometimes I try to be charitable and imagine the GP has had a bad day. Other times I feel like kicking them because they need to keep up some kind of decent mannerly approach.

For what it's worth I've been following you since you were hating every moment of GCSE revision, and look how far you've come! You've achieved more than any of us.

Yes, get your list for the next appt and push for OT. Wearing splints for some time, and now on and off made a big difference to me. My fingers were beginning to be unrecogniseable, but are a great deal better for the splints.

Meanwhile, every little bit of coddling that suits you is exactly what Aunty LK orders x

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Thank you .

That gcse revision seems a life time ago now 😂. Defo wouldn’t want to do that again.

What sort of splints did you get given ?

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I had ones moulded by the OT that wrapped from the base of my forearm and across the front of my hand and over my palm. They came on and off with velcro. It seemed a strange arrangement because it left the most part of my fingers and all of both thumbs free. Somehow the strengthening and immobilising the range of movement in my wrists does the trick for the fingers. The ring finger on my right hand was starting to look very misplaced but now is OK.

I can knit!

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I'm so sorry, you are so young to be dealing with all this and fighting this fight. I had the same thing last week at my 6 monthly rheumatologist appt she complained that I spend more than my 10 minute allocated appointment time on my list of "things " but she only wants to hear about the important stuff.... Point 1 I'm not a Dr so how do I to know what is or isn't important! I only go 6 monthly and I have so much happening in between I want answers to. Ie is it my lupus or is my scleroderma progressing. I was so angry I gave it back to her this time in front of her students., 10 minutes is not enough when we are seen twice a year. Anyway you are being proactive in your health, please do not let your gp undermine that. We are our own advocates. Stay strong xxx

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Thank you .

Your right though we don’t know what’s important or not. For me waking up everyday in pain is important but clearly not for them.

I’m going to have a go in March and my hospital appointment and sick and tired of it . I haven’t seen my consultant for nearly 2 years she went off to have a baby and hasn’t returned so it doesn’t help me.

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Hi loulamb

So sorry to read how your GP appointment made you feel!. I really feel for you as my latest Rheumy appointment made me feel exactly the same on Tuesday. I'm just recovering from it and do now feel angry at how we're made to feel we're making a fuss and or imagining it!. I've had a few of these over the years so should be a pro but I still find it hard!.

It's awful for you as your so young and trying to make your way in the world( doing a fab job may I say)

Two things to help:

1) ring Rheumy clinic and ask to go on cancellation list, may bring it forward.

2). You may be able to self refer to OT to get wrist splints and exercise advice about your hands. I've done this and they've been very helpful. Worth asking as its a long wait.

Also, any questions you might have Lou ask on here as there will always be someone with experience of it who will help.

Do hope you feel better soon. It takes a few days for it to fade but it will. X

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Thank you - didn’t realise it was as common as this gp and docs making us upset and silly .

I will start posting my lists on here for advice !

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This forum Lou has been such a godsend as it's wonderful to find out your not alone as you have!.

Great idea to post your lists on here!. Happy to help you!. I always find it helpful after a bruising encounter with the medics to do something positive to further my case!.

Give yourself a treat, you'll soon feel better and be ready to fight the good fight once more!. It's sad it has to be like this for us. Hope you have a good weekend. X

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I agree with all of the above , you should ask to be referred to OT for assessment of your hand function and provision of aids to assist you with writing etc . I also think you could take someone with you for support, particularly when you see the rheumy. You have done so much in the last year , you have passed your driving test and got a job , you have so much more in front of you so don’t let a doctor rush you if you have more you need to discuss. Best wishes 🌸🌸xxx

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Thanks. I have an OT helping with the bathroom , so would I be able to ask her about my hands or a different one?

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You should ask her and if she can’t deal with it she should be able to point you in the right direction, hopefully that would mean you don’t have to go on another waiting list xx

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Hi Lou. You have lots of friends here with helpful advice and support.

Why not put some target dates on your list and run with it like you did with the very successful learning to drive plan?

Set targets and aims that you want. Ask the OT helping with the bathroom for a wet room!

Perhaps your GP was having a bad hair day; keep smiling.

Best wishes Kevin

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Thanks you .

My OT gave me a bath board but it’s not been good . So she is going to see about a like a hoist chair that lowers In the bath !

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Which do do you prefer; bath or shower? Your choice. Just let OT know.

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Currently shower as that’s the only way I can wash my hair on my own. So I’m going to tell her that.

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Hi Loulamb, lots of good advice here already. If you think your lupus is not under control and affecting your ability to work or do the things you normally do, then you might need stronger or different medications. Do you know if you are in a flare right now? Definitely worth mentioning to the rheumatologist in March exactly how much your symptoms are affecting you. They can only help if you express to them what you are feeling, as the blood results etc. don't always reflect how bad your symptoms are.

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Not currently in a flare I know when that happens as I can’t get out of bed at all.

Been on hydroxy and it helped with tiredness in the start but I’m still in pain everyday. The pain never goes .

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Please mention this to your rheumy next time. My whole body was in pain every day for several years after I got diagnosed, until my rheumy finally put me on a medication that worked for me. (I am taking MMF). I know taking more meds isn't anything anyone wants to do, and there are side effects and risks, but the trade-off is a better quality of life. Your doctor will have to evaluate you to make a recommendation (maybe you need a different painkiller/steroids/immunosuppressants) - don't give up, there are options.

You can also ask your rheumy about blood monitoring, and whether the GP should be doing tests regularly for you.

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Ok thank you . I have a list written for my appointment for end of March

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Bless you.. some GP’s can be so ‘matter of fact’ about things, they make you feel that you are wasting their time; ones that understand lupus and autoimmune diseases are rare, please don’t let the thoughtlessness of the one you had the misfortune to see, get you down, add them to the list of people that you don’t want to see ever again .. please don’t let this get you down the GP isn’t worth giving a second thought too.. keep your list for the consultants appointment x 🌻

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Thank you

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So sad to hear this, it strikes a chord with me that I don't feel the professionals believe us/me. I once told a pain management guy that when I stood up it felt like the weight of my upper body was crushing my lower back, he grinned and said something like "let's be honest that isn't very likely is it?". When I later had an MRI I had a bulging disc, I never saw him again but his colleague, he also poo poos my pain and said to look how paraplegics exercise and push through pain, it made me feel a time waster and if I should just go away as if I've no right to seek help with my pain which slowly tortures me for 5 years now, I swear 'they' all think I make it up ........... I wish! I hope you're feeling a little better today, you can't help but have your bad days x

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I’m sorry to hear that you’ve had this experience.

I just feel like why would we make things up ?

I would love to have no pain run around all day. I would love to be able to pick up my 5 year old cousin when she tried to jump into my arms but I can’t .

I would love to be my old self but that’s never going to happen .

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I didn't realise I was replying to an old post LouLamb, my apologies. Hopefully it means you had your rheumy appt in March, I hope he/she listened to your concerns and also offered you the help and guidance re medicines and assistance available to you as a lupus and arthritis sufferer. Are things any better for you now? I cannot enjoy my grand children as I would like to due to arthritis and bulging disc but I am 57 and they are now 8 and 5, its when they are babies I can't cope.

I hope you have better treatment now for your arthritis and lupus and the understanding of your family and friends x

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