Confused 🤷‍♀️

[Bardongirl50]

Hi, I have fibromyalgia and peripheral arterial disease plus a few others, but my memory is that crap I can’t recall them lol. I’m here to ask for advice, I’ve been on two holidays in the last 9 months! The last holiday in Cape Verde I woke up to this huge bleeding sore on my ear, and my eyes that swollen, it looked like I had gone 12 rounds with Anthony Joshua lol ( not funny at the time ) the eyes took ages to go down and my ear had this huge scab on it for virtually the entire holiday 😳 very attractive ( not ). The other holiday I woke in the night to go to the bathroom and noticed my legs felt odd. When I turned on the light, I was so shocked they looked scalded and bruised. The odd thing was they weren’t sore to touch, just an odd feeling with the swelling. I’m wondering if I could possibly have Lupus. My GP isn’t the best. Apparently Fibromyalgia is a word that’s just bandied around ( his words) so you can imagine the visits I have with him. Forearmed is Forewarned so they say . Thank you for anyone who takes the time to read and/ or reply to me. I do appreciate you 😘 . Much love 💕 Janet x

[RachelD1972]

Hi Janet, is it possible to ask for an appointment with a different gp at your doctors practice? Show them the pictures and request that blood tests be done? I have RA & discoid lupus and am waiting for blood results for systemic lupus. Hopefully someone else on here with more experience will be able to answer x

[Bardongirl50 in reply to RachelD1972]

My GPS just like dishing out the tablets RachelD1972 it took me 2 years to convince them my leg pain and stone cold foot was something more than just basic age ( I was 46 at the time, working 50 hours a week ) then I found out I had no pulse in my leg and foot. This was found by a locum doctor! Then it was all systems go to sort it out. What should have been a simple angioplasty turned into a living nightmare., where I nearly lost my life. I never went back to work from that day 😢😢

[Freckle1000]

It's possible that you're GP might (?) want you to put Fibromyalia concerns on the back burner while they'e trying to work out what's causing the other symptoms ?

Your Fibromyalgia should be respected -but you never know - with more understanding of what's causing you're other symptoms the fibro diagnosis may become less relevant ?

I have no idea - but If you're GPs actively looking for a cause of your symptoms - try to stay with him.

It's not always the personality of Doctors that counts the most.

[Bardongirl50 in reply to Freckle1000]

Thanks Freckle1000 just feel every time I see him, he must think 🤔 oh god she’s here again 😂😂

[Freckle1000 in reply to Bardongirl50]

Unfortunately for a lot of us here have to make a lot of executive decitions about Doctors with new symptoms.

Actions always speak louder than words. If you'e turning up a lot trying to get help and getting nowhere - then another Doctor might be in order ? Just remember the poor attitude is 100% his problem - not yours. You have every right to be there - he's been paid to do a job.

It might be worth re posting to see what others think.

Doctor patient relationships are complicated. My GPs a very gruff impatent 🐖 - but for the most part he does his job a lot better than others in his practice.

It's hard to navigate.

X

[Shorthouse in reply to Freckle1000]

Drs don’t understand auto immune illness paleo diet Micky Trescott has helped me

[Freckle1000 in reply to Shorthouse]

You can't rely on a diet to help you overcome what sounds like a potential physical undiagnosed illness that may permanently damage you're body and leave you disabled. Listen to Paul. You need a referral to a Specialist. Wether that's a Rheumatologist, a Lupus specialist - or some other kind - you need to get that referral - if not from you're current GP - then another.

Also - take the photos of your symptoms with you.

I have SLE lupus and know the paleo diet is actually detrimental to for my illness.

I also know from bitter experience that fibromyalgia symptoms mimic Lupus. I spent years unable to function from fatigue and brain fog - and being told it was fibro. It wasn't. It was my lupus flaring and it lead to renal failure, peripheral nerve damage, damage to the digestive system - the list just goes on and on.

Please validate your own feelings regarding symptoms and act. Sometimes you need to tell Doctors what to do.

[Bardongirl50 in reply to Freckle1000]

He has said to me, we have a lot going on that needs dealing with! But doesn’t seem to deal with it!! If you get my meaning? I get so down and frustrated because they come out with statements like “ I believe that you believe you’re in pain! So bloody condescending at times! Take my word for it Doc, I’m in pain alright 😂😂

[Bardongirl50 in reply to Freckle1000]

It’s so weird you mention all these symptoms as I suffer so many of them ! 3 years ago I had to undergo an angioplasty for clogged arteries, I had no previous cholesterol problems, I’m not overweight ( 8st 4) don’t smoke nor drink) bp always normal, working 60 + hours a week so very active! During this procedure he managed to crush my arteries causing a huge blockage in my groin! This required major surgery! I had a common femoral endarectomy to repair and had an arterial graft taken from my leg also. They couldn’t use this so I was left with another scar for nothin !! After coming back from surgery, maybe 15 mins later my femoral artery burst nearly resulting in my death !! So another op to sort that out!! Since this time I’ve developed chronic pain syndrome! Fibromyalgia! Postural hypotension! Horners Syndrome! And my eye specialist thinks I more than likely suffered a stroke during the massive bleed, as my right eye droops very low now! Tinnitus and my kidney function is not good! My lowest bp is 66/37 my highest 89/56 I’ve been put on a cortosteroid to try and raise this! Every day is like a battle! I sweat buckets too and that gets me down !! It’s just awful!! Hopefully these bloods will tell me something!!

[Freckle1000 in reply to Shorthouse]

😬 Please have a look at my reply to Janethayway

[Paul_Howard Partner LUPUS UK]

Hi Bardongirl50 ,

Have you had a referral to a rheumatologist to be investigated for autoimmune diseases (including lupus)? GPs often aren't sufficiently experienced with these types of conditions to accurately diagnose or treat them. You probably need to see a specialist.

For more information about getting a diagnosis of lupus, please take a look at our article here - lupusuk.org.uk/getting-diag...

[Bardongirl50 in reply to Paul_Howard]

Thank you Paul for replying! I was referred to a rheumatologist about 2 years ago, but these symptoms hadn’t started then. It was more intense pain, heavy sweating, and memory problems! She was very dismissive to be honest and I wasn’t in a good place at the time. The write up she sent my GP basically had me down as a mental case who has imaginary pain! That’s what I’ve been struggling against for the last 2 years, and other things keep popping up, like this horrible rash like marks on my legs! Anyway my doctor is sending me for blood tests to rule out Lupus ( At Last ) so maybe now il get answers

[Paul_Howard Partner LUPUS UK in reply to Bardongirl50]

I'm glad to hear that you are having blood tests. Let us know how you get on.

[Bardongirl50 in reply to Paul_Howard]

Had them done finally on Friday!! Would have been sooner but had 5 teeth removed, got an infection and been in agony 😫😫