So it's all in my head apparently...

tillytop

I went to the doc yesterday about my blood pressure and associated problems and about the continued poor vision in my right eye.

I told him that, despite the beta blocker, I am still having trouble with racing heart rate – even at rest and I also now have breathlessness, which has only come on over the past couple of weeks, have had pitting oedema in my ankles and lower legs for a few months and have recently had a couple of episodes of pretty severe chest pain. Oh and that the cough I have mentioned to him time and time again has now been going on for more than a year (at varying degrees of severity). The doc listened to me, took my bp and pulse and said that “if I wanted” I could increase my bp medication but “if it made me breathless I would have to reduce the dose again”. He didn’t look at my ankles or even ask me to describe the chest pain. Then he said, basically, that what I was describing were probably panic attacks and down to my fragile emotional state, or words to that effect. So basically, just because I made the mistake of telling him a few weeks ago that I wasn’t coping, everything is now down to stress. Ok, most of the symptoms can’t be seen but since when did stress cause swollen ankles? As I said to the doc, I know I am very unfit and overweight and I know that, if the Rituximab does its stuff I should be more mobile and able to address these things. All I really wanted to know was whether he thought the current symptoms were due purely to being unfit or whether there was anything else going on (RA being a significant risk factor for cardiac disease and all that).

Then he said it was strange that I was feeling so low when my joints are now improving which proves how little he understands. Yes it’s great that my joints are now improving but that doesn’t mean I’m just magically going to be well. What about the nausea, upset stomach, vision problems, dry eyes, dry mouth, fatigue, chest pain, breathlessness, cough, swollen ankles, osteoporosis ...

Next came the discussion about my eye. I have ongoing vision problems due to dry eyes caused by Sjogrens Syndrome but for the past three weeks my right eye vision has been really bad. He had a good look at my eye, said “looks fine to me, go to the optician and get him to test your vision”. Oh joy I thought. Been here before playing ping pong between the GP and the optician before finally getting an eye hospital appt. And, in the back of my mind, bearing in mind the discussion we had just had, was that he really didn’t believe me. Obviously not being able to see is down to stress as well.

To say I came out of my appt feeling upset and humiliated is an understatement. Hardly stopped crying for the rest of the day.

But I did ring the nice optician who helped me before and explained the eye situation and he was able to see me today. He said that the eye is very scratched again due to the dryness , hence the poor vision and he said I needed to go back to the eye hospital again to see what can be done because this is occurring despite all the eye drops and lubricating cream I am using. So at least that’s not all in my head eh?

To me it just seems so wrong that the GP can decide that it’s all down to stress without even examining me properly and I am actually really concerned that I am going to have a heart attack or a serious angina attack. And this isn’t like me. Like most people with ongoing health problems I tend not to go to the GP at the first sign of a problem – I just to leave it and see if it goes away. For example I am pretty sure that, for the past 8 weeks I have had a fractured rib but, because I know there is no treatment for fractured ribs, I have just left it alone, hoping it would heal by itself which it seems to have done thank goodness.

So I’m pretty much stuck on the “heart” front since the doc won’t take me seriously. Just have to hope I don’t drop dead from a heart attack because the symptoms have been ignored.

Thanks to anyone still reading at this point. No answers needed to my ramblings. Just helps to share.

Tillyxx (who's just off for a nice glass of wine - that's meant to be good for your heart isn't it? Well tis a good excuse anyway).

suzygirl

Oh (((hugs))) Tilly how awful. I would have been so upset as well. With all our meds and problems, chest pain is a real worry. I would have have wanted reassurance not patronising.

Next time you have an episode of the bad chest pain, go to A & E. They would hook you up to an ecg and check you over. As you say with RA and high bp you have risk factors which shouldn't be ignored. Is there any way you could speak to another gp?

When you have your next rheumy appt or see the rheumy nurse, mention it as they can organise tests or speak to the gp on your behalf. It should be taken seriously. Or take hubby with you to the appt.

Now, relax and enjoy a tipple, they do say it is good for the heart!!!

Thinking of you and sending you comfort and choccies x x x

barbara12

Hi Tilly
Your GP is just taking the easy option, oh its stress, wow I bet that wasnt the first time he had said that today.
I am getting more disgusted with our health service, I am with Suzy, the next time you have a racing heart beat go to A&E, they will check you over properly.
And then you can take it from there,and hopefully go and tell your GP what you think of him or her.
Sorry I am going off on one there, I do hope you get the eyes sorted, it must be so uncomfortable and scary for you.
You take care...and here are some hugs to keep you going..((((())))

keith1971

Hi Tilly,

Wow, that sucks! Sounds like you're in living hell right now.

And from someone who has ongoing heart issues I know how difficult it can be to get your GP to understand. The old 'it's stress related' and 'try not to think so much about it' lines have been thrown at me countless times yet I'm still having to take a beta blocker every day!! At least I'm now being referred to a cardiologist again, appointment next month.

Will PM you when I have more energy, totally shattered right now, as you know, been running around (as if!) all day back and forth from GP to rheumatologist. Not wishing to highjack your post but I'm starting meth tomorrow (7.5mg to start with) and also a short course of steroids, again 7.5mg.

Feel better soon,

x x x

Starburst

Oh Tilly I'm so sorry. *gentle hugs*

I agree with suzygirl, if you get an episode again, please go to A&E and insist on them checking you out. They're usually very good and nearly always do (at least) an ECG.

Would it be possible to see another GP at the surgery and perhaps take someone with you? I'm sorry you were brushed off and ignored. We do know our own bodies. That said, I hope that whatever is it can be sorted.

It's completely understandable that you are under emotional stress. GPs tend not to understand that RA can affect all aspects of your life. We do understand though, so sending much love to you.

Wish I could offer some more useful advice but just wanted to let you know you're not alone.

Take gentle care.
Sophie xx

valval

i tilly that was awfull of doc you said you were getting chest pains etc well could it be arther in sturnum, when in a flare in it i have breathing problems and the pain is awfull and get light headed because tend to breath shallow could this be happening to you ???.
i know it a worry when it your heart try to rest and if no better try to see different doc hugs val

Poppyg1rl

Hi Tilly,
I'm disgusted with your GP, to dismiss your worries and not even investigate chest pains is poor, very poor indeed :x
Get yourself down to A&E and tell them you have chest pains...I guarantee you they will not tell you it's stress! At least that way you'll have the care you need and deserve.
Lots of love and hugs Xxx

stickywicket

Tilly, I'm so sorry. This, as my American friends would say, sucks. You deserve better, much better and you must hang on to that. As others have said, try another GP, either in the practice or elsewhere, go to A&E next time you get chest pains. Don't just put up with this rubbish. He was wrong about your eyes. What else might he be wrong about? Trust your own judgement and look for help elsewhere. We're all behind you.

(Think it has to be red for the heart so, if you've been supping white, better open another bottle.)

Take care.

frogmorton

Hi Tilly

Oh no :sad:

This is so not like you.....l would take you seriously if l were your doc :x Tilly l wonder whop you see next....would the rhuematologist help at all?
Or another GP at the practise?

My Mum and Dad died of heart issues so l worry a lot about similar things to you.

After my Dad died probably 8 years ago l started to get chest pains and had all the tests going (and had had back surgery at the time too). The results were fine But l was taken seriously and reassured. It was so scary. How much would a chest x ray cost about that cough.

So very glad the optician knows exactly what to do about your eyes at least. There are good practitioners out there!


I am actually quite cross when l read this Tilly.....it took a lot of your courage to go and see him when you are down and NOW it is being thrown back at you in place of reasonable assessment.

NO depression does not generally have swollen ankles as part of it's symptoms :roll:

Only useful addition is l would if you can, take G with you next time you go - he will be sick of that cough too by now so he can back you up

love and hugs from me

Toni xx

barbara12

morning Tilly
Just to say I am still thinking about you, I hope you managed some sleep last night.
More hugs coming your way ((((((())))))

wannabewriter

Oh Tilly

How rotten for you, it is so upsetting and frustrating when your GP stops listening to you. They’re supposed to be your first port of call to rely on for referrals etc to the right people, but when they don’t listen it can really put up tons more obstacles to getting seen to properly.

I had similar problems to you a while back, with palpitations etc, and for ages they told me it was stress. After seeing the cardiologist, who couldn’t find anything wrong even on one of those 24 hour ecg things, I got signed out. It was only when I changed GP that he then said ‘sounds like adrenal fatigue’ caused by the many meds I was on. Cue treatment for adrenal fatigue and voila – bye bye palpitations (and hello weight loss to boot). I’m not a doctor and am in no way saying it is adrenal fatigue for you, but it could be worth taking a look at it from that perspective. Can you see another GP? I find someitmes they are almost grateful if you go to see them and have a few ideas of what the problem could be, unless they are very much the old-school Doctors Are Always Right You Are The Stupid Patient Who Should Follow Our Orders And Do As We Say type.

I really hope this gets sorted soon, it is so worrying when your heart starts playing up, and that worry can add to the stress of it all which can’t help!

I have everything crossed for you that this gets sorted soon my dear

xx

PS I also had majorly swollen ankles with pitting odema as you mentioned, plus breathlessnes, which is why I thoguht I'd post about adrenal fatigue as a suggestion x

suzygirl

Tilly, hope you are feeling better this morning. Can you pop to the eye hosp to get your eye sorted out? It sounds very painful.

(((hugs)))

stickywicket

Wannabewriter's post makes sense to me, Tilly. I think, if it were me, I'd want to be investigating that line of thought.

Hope you're feeling a little less frustrated today. I'm not. I'm still furious at the

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liesa

Hi Tilly...
for starters it is NOT all in your head,
i lost my dear mum to a DVT, she had swollen ankles and a cough/cold/chest infection, by the time a locum dr got mum into hospital she was dead the next day!... coughs/chest infections/swollen ankles always should be taken more seriously, (im going to see my dr this afternoon for calf pain and a cough thats gone on for ages ....
i agree with the comment about arthritis in the sternum, i have been to my gp many times in the past to be told its ra pain... it always goes off and i do feel reassured... seek a 2nd opinion.... its not fair on you to be fobbed off in this way... life is precious and its for living...

thinking of you ((hugs))

Ankyspond

Hi Tilly,

I can only mirror what is being said on here, you MUST go to A&E next time you have heart pains. Can you go to your consultant and speak to them about any of this or I would demand a second opinion from another GP it is so easy to put things down to stress and such an easy option but don't allow them to get away with it. I have been told in the past (actual words) from a doctor: "you are imagining the pain and its all in your head you need to be more positive" then diagnosed with AS so please don't give up. Scream from the rooftops if you need to, we have a national health system whichis supposed to help us, we pay our taxes and do our duty so you deserve the right treatment. I am a believer that each to there own and maybe your doctor is not experienced enough in the areas you are having problems in.

Dont let this go be assertive and get second opinion, sending my love to you and hoping it works out for you here if you need anything. xx

tillytop

Thank you all so much for your kind words and support as always.

Much appreciated.

Tilly xxx

stickywicket

Just stopping by to say hello, Tilly. Thinking of you.

tillytop

Thank you all again for your kind words and wise suggestions! I can't tell you how much I appreciate it.

I have now climbed out of my "sulk hole" and am doing my best to put the GP appointment behind me. (I have an unhealthy tendency to keep replaying the whole thing in my mind which I know is NOT a good thing to be doing :roll:).

I also now, thanks to your posts, have a plan. I will mention all this to the rheumatologist when I go (mid August I think) and get his thoughts. He might be more willing to refer me elsewhere if he feels it is appropriate. And if I have any more of these really bad chest pains in the meantime I will do as many of you suggested and go to A&E to be checked out.

Good news on the eye front too. I have managed to get an appt at the eye casualty dept on Monday morning. Feel a bit of a fraud cos it isn't in any way an emergency, but when I explained my concerns to the nice lady who answered the phone (continuing eye damage and the possibility of infection in light of the immunosuppressive drugs) she was happy to make an appointment for me. And she also said that the consultant in charge of Monday's clinic is a specialist in this kind of thing - by which I guess she meant Sjogrens - so could be a good thing all round.

Thanks again all.

Tilly xxx

keith1971

Good to hear you have a cunning plan Ms Tilly! Also good to hear your mood has lightened a little. I'm still all over the place but having a little codeine high which I'm enjoying!

x x

chile168

Hi Tilly,

The great thing about insomnia is that you can take great time in reading the posts without being disturbed by the phone, door, dog etc.

I have had chest pains, tightnings, feels like your chest is being crushed. I also get rapid heart beats even when resting as you mention. That feels weird, like my heart is going to pop out. I did go to A&E and was put on ECG's which assures you and do think it's a good idea. I also mentioned it to my rheumatologist. They arranged for me to have a heart scan. They gave me a nuclear injection which apparently is soooooooooooo expensive so they called to make sure I was going to turn up. Pleased everything was ok so its definitely worthwhile mentioning it to your rheumy.

Like you I too play a conversation over and over again and get so angry. I wonder if a lot of us feel like that because we have to fight so hard to be believed, to have recognition, to know that this is not in our head. I find that even before an appointment I am on the defense just because I feel, here we go again, not going to be believed.

Hun I do hope you get it sorted out. xxxxxxxx

Eve

suzygirl

Tilly, great plan!!!! Glad to hear you are feeling a little lighter. I replay conversations etc, and it isn't a good habit. I take an anti anxiety med now, and it really helped this problem, fortunately.

My rheumy has ordered 2 heart scans for me, so I would imagine your rheumy will do the same. They take it seriously as they know the effects of the illness, strain etc it puts on our bodies, along with the meds.


Hugs to you. x

stickywicket

Hope the eye appointment went well, Tilly. I'm so pleased you got someone who's a specialist in your problem area.

You? A fraud???? Best laugh of the day so far.

Take care, Tilly.

tillytop

Thanks Keith, Eve, Suzy and Sticky for your posts.

I am definitely going to ask the rheumatologist about all this stuff when I see him towards the end of August.

I had my eye hospital appointment this morning and, although I felt initially as if it was a waste of everyone's time because my vision is now back to normal, G, who has a much more positive outlook on things that I do, helped me to see that, actually, it was well worth going. Outcome: the doc confirmed that there is no new damage to the eye and no sign of infection. She said that, when it happens again (cos it will) I can contact the eye hospital directly so that they can assess and treat the problem when it starts. I also have an appointment with the "cornea clinic" (sounds more like feet than eyes I reckon ) in about three weeks time and hopefully they will be able to give me some advice on how best to manage the problems for the future.

Thanks again for all your kind words and support peeps.

Tilly xxx

stickywicket

I see this as a result, Tilly. If nothing else it allows you to bypass the insensitive idiot in future. Your eyes sound to be in safe hands - as it were.

tillytop

Thanks Sticky.

Tilly xxx

valval

that was great appointment well done on going val