Liar Liar Pants On Fire!! Part 1 - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Liar Liar Pants On Fire!! Part 1

Vicrum88 profile image
13 Replies

Hi everyone!

So, how many of us have been to a doctor with an ailment, been examined, been given a viable answer for our questions but have still left the surgery feeling unconvinced that you've received the right answer or a solution? I know I've felt like that and I would bet my life that there's loads of you out there who have also experienced the same problem.

Now, out of the same people, how many of us have had the courage to argue that we're not satisfied with the explanation given and want further investigations? - again, at a guess, I bet there's not many people willing to push back against what a doctor has told us. After all, your doctor is a Medical Professional so what they say is gospel, surly? Wrong. Even medical professionals make mistakes!

Last week I went to my GP with my weird explosion of freckles and moles and I left the surgery feeling like a deflated balloon.

The GP in question listened to my concerns and asked to examine the "new arrivals". I was more than happy to oblige. He then looked at my moles and freckles under a bright light and announced they were normal and safe and that I wasn't to worry. I have to point out that along with the explosion of literally HUNDREDS of freckles all over my body, I have a "blue spot" which appeared from nowhere on my cheek which I'm now told is a Blue Naevus.

I've been declined a referral to Dermatology despite the fact I have numerous skin issues at the moment and little explanation.....

I don't believe that this should be overlooked. It's an abnormality for my body to have done this.

Now, I can only load one photo to this post which is why I'm doing a "Part 2".

Further post and photo to follow this one....

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Vicrum88 profile image
Vicrum88
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13 Replies
Ygould profile image
Ygould

I had the same problem, back and forth for months. The rheumatologist told me I had fibromyalgia, and was having panic attacks. Thankfully I started seeing a new gp who was outstanding and refused to accept that. Turns out I have mixed connective tissue disease, raynaurds and a severe chest infection. Little different from my original 'diagnosis'! I really hope you find a doctor who helps you. Good luckx

amc282 profile image
amc282

Push back. I was forced to explode and accuse the surgery of not wanting to provide me care because of my nationality. Long story. The secretary said, I am sure that is not the reason. Perhaps not. However, I firmly believe that once they think/know your diagnosis may cost their surgery money, I am convinced they give you the runaround and fob you off as long as they can. I am also convinced GENERAL PRACTITIONERs (they are called that for a reason) are clueless about anything beyond their scope. I also have a gripe to pick with female (sorry to slag off my own sex) GPs who work 2 days a week and have no knowledge of your case let alone who you are. I had to fire my surgery and hire a new one. Luckily the care is marginally better. They seem to forget they work for us as we pay the taxes that fund the NHS. Sorry for my gripe. It all just makes me so angry. PS. There is also a real shortage of dermatologists, apparently.

Jmiller623 profile image
Jmiller623

Same thing happened to me. Was even told by derm that they are cherry angiomas and benign. I asked why are they popping up everywhere all of the sudden. They had no answers for me. They still keep popping up but at a slower rate. They are permanent and will not disappear. So I’m just like well.... thank god I’m married already.

Also looks like you have a little swelling given indentations from bra straps. Oddly enough, I always had imprints like this with all clothes and socks. Never really knew it isn’t normal. Taking antihistamines Allegra twice a day has helped with this and who knows, maybe with the angiomas as well. Antihistamines definitely quieted all the weird rashes I was getting.

You could push back. However, if derm says they look benign, you’ll get more hand waving. I honestly would be more worried about the livedo before the skin problems. Maybe you could push for a derm referral for the livedo and then kill 2 birds with one stone if you get an appt?

You’re not alone with the frustration of wanting to disagree with your provider but also having to walk on eggshells. Physicians have fragile egos. You can literally see their head about to explode when you tell them they are wrong. 😂😫😬

in reply to Jmiller623

Looks like has excess fluid in body to have those indents so much

Jmiller623 profile image
Jmiller623 in reply to

Yes. Very common esp in lupus, lupus like disorders and MCAS. My whole right side has been swollen before. It’s part water retention, part capillary dysfunction and leakage into subcutaneous tissue. Common with CTD even without kidney issues.

Raynauds is far more intrusive in our lives by far than just "cold hands and feet" as Quack told me who also argued with what specialists said!

Same one that struggles to open a packet of maltesers!

in reply to

Hi, I had an eye-opener when I couldn't answer my touchscreen phone. On other occasion I couldn't call a friend to pick me up further away from home. That frightened me and I realised I will have to think about what changes I can make. Many times, I remember not being able to hold a lead of my dog, fighting it, making it home and collapsing there in pain. When I see people underdressed, I think lucky them. In fact, I stopped cycling because of Raynaulds. I couldn't feel and press breaks. Do you know what really helped me this winter? I wished heated gloves for Christmas and got them. That saves me attacks. We have more expenses and more things to carry and think about, but others have their own complex lives too.

Vicrum88 profile image
Vicrum88

Thank you all for your comments and kind words!

Just to clear something up first before I go on - my bra straps! I'm a boobie girl and I've always had bra strap marks since I got my first bra. My shoulders have permanent dents in them from the weight of the straps. I had a Bilateral Breast Augmentation 4 years ago to try and help with my shoulder and neck pain but unfortunately it didn't help much.

I absolutely knew I wouldn't be alone with my gripe! Ladies and Gents, never apologise for griping on my posts! We're all in this together and I'm here to support you guys as much as you guys are supporting me!

Ygould amc282 Hidden Jmiller623 xxxx

in reply to Vicrum88

Hi try a better quality bra then as the weight should be on the band not the straps and if straps holding them up the band must be rising up ie not parallel across the back but hooped up which means little support.

What you have got is often found with Store type bras that stretch out so quickly.

What size are you or should be more to the point?

SylvieJ profile image
SylvieJ

Hi I have just read your post. My husband has recently had some issues with his skin and had to ask a GP. Unlike yourself he was given a referral, but it wasn't a face to face because the Skin Specialist was only doing phone appointments. Would it be worth while emailing or writing a polite letter to your GP saying that you were not happy with the answers you were given and it is causing you anxiety. Request a second opinion, doctors are not gods, and they should give you a second opinion. Don't be afraid of any back lash because often what we are afraid doesn't happen. As much as a patient has to respect the medical profession it is a two way street. If after all that then if it's do-able look for another GP in your area and transfer.

Like you I have lots of moles on my body, and my doctor named them warts, actually it was something he called them which refers to witches. I wish I could remember the actual name of them and they are quite common and like you said seem to explode suddenly all over your body. I have read that people with auto immune disease are prone to moles and these warts.

I found this link eventually as when typing for a search for moles and warts, you get lots of dermatology results who want to sell you removal solutions.

bad.org.uk/shared/get-file....

Hope this helps, don't give up.

Best wishes,

Sylvie

catkar profile image
catkar

Hi Vic,

Your post made me feel very sad , it resonated with me, My own GP surgery are very flippant (It comes across to me that way ) , Its a quick 10 Minutes and off you go with a 'Lets try this and see what happens'. I am feeling pretty low at the moment due to issues not connected to my crest , and i am fed up with everything being blamed on Covid , the new get out of jail card for the health service .... Last time i had to go to my doctors I explained i was having a new symptom , I felt not my self and asked the doctor to check my blood pressure , she said she couldn't as she was running late and didn't have time , I was made to feel a burden and a drama queen ! What is happening to the medical profession ! I hope you get things sorted and sorry to sound off and make it about me , I know how you must be feeling ....

Take care

Keep well

Cat x

Vicrum88 profile image
Vicrum88 in reply to catkar

Hi catkar !

Thank you so much for your comments.

Cat, please don't ever apologise for sharing how you feel with us on here. We're all here for the same reasons so don't feel bad about speaking up about your experiences because it genuinely helps people like myself to not feel so alone in all this.

I feel like you've been fobbed off as much as I have been over time and it's a horrible way to be made to feel. They usually throw a box of antidepressants at me for any problem I have because questioning my mental health is apparently more important. I could go to the GP with any problem at all and it'll be turned into "But how's your mental health at the moment?" And make me feel like I'm imagining it all.

A blood pressure check takes a couple of minutes and can save someone's life so that's not acceptable for you to be sent on your way when it could have been checked to put your mind at rest! A manual blood pressure check takes a few minutes but these days they use machines to check Obs and it takes 2 minutes. You must have felt so let down by them! Sometimes it's hard to believe that we're relying on these doctors to keep us safe. And it's ok to be feeling down Cat. We're all here to support and share experiences about how we feel. This is a safe place. I'm always here to offer anyone any support I can to help. I've a strong shoulder if you ever feel a bit lost and need a chat or even just to rant to someone outside of your circle.

Keep your chin up sweetheart xxx

catkar profile image
catkar in reply to Vicrum88

Hi Vic,

That reply made me feel a bit tearful, Thank you so much for your kindness.... I think i'm just feeling a bit sorry for myself today..... I did actually pull the doctor up at the time and she then agreed that if i felt that strongly she would do the BP (as if she was doing me some huge favour ) needless to say i declined the offer and left. I did actually complain to the surgery about that incident , I coudn't help thinking that if an old person had asked for this and were refused they would just accept it and would feel chastised... I got a call from the senior doctor apologising ... Anyway enough of that ... Hope you get things sorted .

Sending love

Cat x

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