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LUPUS UK
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Another pointless appointment...

I feel like I'm wasting my life trying to convince people there is something wrong with me, yet I've never given anyone cause for doubting me in the past! Quite the opposite in fact, on 3 fairly major occasions now I have told Drs there was something up, they haven't believed me, I've pestered them, and they've had the shock of their lives and apologised profusely when it turns out I do know my own body, and I was right! So why is everything still such a battle? They've nearly killed me twice by dismissing me :( and they are doing it again.

So I saw my new rheumy on Tuesday, I had sent her a history to read in advance along with GP test results, as I knew that she wouldn't have time in the appointment, and that I wouldn't be given time to go through it all. I was assured she would see it. Of course she didn't, and she was so impatient and dismissive I found myself forgetting things, or clamming up mid sentence. She wasn't interested in seeing my rashes and said if the bloods were fine then there was another explanation for everything. She confirmed I had Fibro and HMS and sent me on my way, ordering exercise as treatment. She isn't even offering a follow-up once the bloods she ordered are back.

It's so disheartening because I feel ok at the moment, but when I flare, she would have seen a very different person, I can't walk or breathe without pain for starters. My face, scalp, neck and chest are covered in a rash, she said it was acne but it itches, so I saw my GP again yesterday as I've had this for 2 weeks, and he's diagnosed folliculitis again, so I'm back on anti-biotics, AGAIN. I literally give up. I don't see the point in fighting anymore, maybe they'll listen the next time I end up in hospital with renal failure and meningitis type symptoms for the 3rd time....

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i have been battling with doctors for the last 3 years and am sick of being dismissed and fobbed off .family members and friends are the same .I have told dr's the same over and over but they wont accept what I am telling them.as you say we know our own -hating being left even for a short while , nestling up close especially in bed and just laying around "moping and looking sad"and concerned for me.

my rheumy dismissed the fact that I had lost weight and despite my telling him I ahdnt eaten cakes biscuits snacks puddings etc fro 4 years + he still insisted I needed to diet cos my weight had gone up 11 kgs according to him in 7 years but wouldn't listen when I told him it was all abdominal.also he dismissed lupus symptoms.

I cannot walk uphill or carry shopping without pain and breathlessness and its a struggle to walk my dogs.my GP has treated me for individual symptoms but not linked them altogether.skin rashes,scalp problems,nasal sores and swelling. weight loss and swollen abdomen .pressure on ribs and stomach protruding ribs-none of which given a diagnosis for.they keep puttign everything down to fibro even tho dont get skin rashes with fibro.my Ca125 levels have been elevated tho not excessively but still bove normal.

im the same htink when it gets serious and its too late they will ahve to admit they are wrong.my concern is I need to be here fro my dogs.

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I changed rhrumy, as the first one left me feeling like a hypochondriac, now I have a great doctor.

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I know how you feel. It took ten years for some sort of diagnosis for me....and then fibro, Sjogrens, kidney problems and auto immune hepatitis was added. I was made to feel like a hypochondriac for years and even sent to psychiatrists. I now have a good rhuemy but feel phobic of doctors...especially the males.

I would suggest keeping a diary and taking photographs and going to A&E when your at your worst. I also remember seeing some kind of system advertised at the hospital for people who have problems with doctors, diagnosis etc.

one doctor told me that doctors diagnose fibro when they don't know what is wrong.

If possible get someone strong to go with you, as it's hard when you feel ill and your confidence is at an all time low.

It might also be worth speaking to CAB or someone like that. Change your doctors clinic also if possible. Don't give up. Be strong and show them your not taking no for an answer. It's hard but you will get there in the end.

If you can afford it see a private doctor or try and get legal aid and let them help you sort things out.

One other thing is doctors and medicine can only do so much....mainly treat the symptoms. Don't expect a cure from them. Try and do some research into diet and supplements etc that may help. I went on a raw food diet....juicing etc and it really helped. I put on weight and stopped being sick?.something I suffered from for years. I also added a lot of foods with antibacterial antiviral properties. I haven't healed myself yet but things have improved. I'm starting to believe if the body gets the right nutrients and help it can heal itself. Also stress is one of the worst things for your health. Sorry this post is so long. Just wanted to give you my experience.

All the best. Hope you get the help you need x

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Thank you, this is really helpful and very encouraging. I definitely need to look into lifestyle choices. I was so ill and stressed about trying to keep a roof over my head when work wanted to sack me for time off for sickness, that I didn't take care of my diet, and I drank alcohol every night after work. I've stopped drinking altogether this year, and given up work, and feel the benefits of the reduced stress and no booze already, so diet is next. I guess I need to help myself as much as I can too. I've been reading lots of posts from other people, and I've only been fighting for answers for a couple of years, so compared to everyone else it's no time at all - it seems I have a long way to go. It's just scary to think I might have to go through all the life-threatening stuff again in order to get taken seriously! I'm going to look into the juicing/raw diet as I'm sure I could benefit from something like that. I hope you are doing better now? Xxx

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Thanks for reply. Glad I could be of some help. I used to be a bit of a party animal and was almost constantly stressed out with worry etc. illness can cause a lot more stress also. I also found some relief when I finished work and had time and energy to take care of myself better. Still it has taken me a long time to get to where I am now. I also spent thousands on different therapies that didn't help, and I tried everything except diet and lifestyle change. I got to the stage where I couldn't cope with stress at all...I would just crumble.

Since taking control of my life and eating better and relaxing more, my energy is better as well as coping stills and I feel much happier and less depressed. One book I read likened illness to being at the cliff edge and he recommended whole food, relaxation and exercise. Part of the relaxation was a few times a day relaxing to the point of just before the feeling of falling to sleep. It helps depleted adrenal glands.

YouTube has a load of information on raw food testimonies. Look up a lady called Mimi Kirk, she is 75 and looks and feels amazing. She travels the world, writes books etc. she is a raw food advocate. Also a film that was on TV called Fat, sick and nearly dead is on YouTube and really inspiring, even if you don't have weighted elms. Two of the guys had immune disorders and were cured. Both were on prednisolone and one was also on immune supressants. It will inspire you.

Good luck. Hope you find that light at the end of the tunnel. Hugs xxx

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Insist on different consultant. No human, particularly an "expert" has the right to make you feel worse. "Firstly do no harm" is meant to be medical motto I think. Excellent idea to take care of yourself, that gives you some control back.

Best of luck to you. :)

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Sorry about spelling mistakes x

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Hi just wanted to say, I know how you feel!!!! Try to keep strong, and I know that's really hard when you are down...BUT, you do have this site, and for me it has been such a source of strength in the past. A lot of us have been where you are, and I believe that Catlady56 is right, try to get a different consultant. I was fobbed off for years with it's 'Fibro', but I knew full well that it was more. I have come out of appointments before feeling an inch high-and starting to question myself if it is all in my head-until I had a breakthrough-and another GP at my surgery took some more bloods and called me back, and luckily that time my bloods DID show something....but they do not always.. a good Rhuemy would know this. Look into diet etc., but do keep a list of symptoms,and take pics on your mobile etc., and I know when in a really bad flare the only thing we can do is lay in bed (sometimes for me it even hurts to lift the duvet-my whole body aches-and my heart just races-even when I am just laying down!!) Is your GP sympathetic? If not look at changing that too. All the very best...and once again-try to stay strong-you know inside that something is very wrong xxx

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Thank you, this really does help. I'm flaring now, I had a night of crazy sweats where I had to get up and change pjs/bedding 3 times, my skin is itching red raw and my ribs and collar bones feel kind of dislocated when I breathe, it's bizarre. The duvet does hurt, it sounds funny doesn't it, but often clothes and bedding hurt when they touch my skin - as for my bra...today will be a no bra day if I get dressed because the pressure feels like constant bruising. I'll keep writing it down, and hoping they eventually listen. I have one more round of bloods today, and an appointment at a clinic next week, then I'm on my own again and it's plan B!

Xxxx

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Just to say Good Luck with bloods today...and you never know it may be good that you're in a bad flare and having bloods done on the same day!! - you never know-there could be a reason there-perhaps the bloods will come back showing something after all....And yes know the feeling about 'no bra days'.....sometimes I just can't put mine on if in really bad flare....I have even had it where my earlobes sting!!...and that sounds ridiculous, even to myself, but I swear it happens when a flare is at its height!! .Once again, all the best and try to keep smiling xxx

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Xxx

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anbuma

copied and pasted from thyroid community

I have just got home from seeing my gp and it s another wasted appointment.showed him a list of q's to ask him and he went on about me going on forum saying its American and I cant go on going on these internet sites.i wouldn't have to if I was given answers.i only ask people advice,.it is not American ,replies are from british people.he didnt give me answers to all my questions -said his hands are tied and its the labs that wont do T3 and T4 if TSH Is normal..told him I had lost weight on my bum and legs ,so he weighed me and said your weight has actually gone up-MY RESPONSE WAS THATS BECOS MY STOMACH HAS GOT MORE SWOLLEN AND HEAVIER.FELL ON DEAF EARS.he commented that I ahd gone to A&E and they couldn't find anything.it was on advice of others.said I have had pain in my ribs and protrusion for 3 years and noone has given me any answers and since symptoms gto worse 3 years go-fobbed off and ignored., . i asked him how come others have the same symptoms and get diagnosises and I dont.no resposne -said i have another appointment with rheumatologist.ddint ask why. and ENT after having a year of treatment from you for my nose turned round and said"it s not sinuses" and told me my nose wasn't swollen when it quite obviously is.why can the accept that my weight is all abdominal and has increased now I have lost more weight elsewhere.its only my dogs who know something is wrong.to him its all in my mind when it is not.when i said my CA125 results are/were above "normal" his response was htye have come down,but why higher in first place.??i told him i couldn't eat .felt sluggish and wanted to sleep the whole time cos so tired-said nothing.how cani be gaining weight when I don't eat anything and it is all abdominal.now definitely had enough of living.i think i don't even want to be here for my dogs.when it s too late they will be sorry.

V Last edited by anbuma

thyroid community

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This disease is great isn't it. I feel like a hypochondriac a lot of the time and think that one illness couldn't possibly throw up all the different pains n symptoms. My lupus affects all my muscles and joints, but all due to my weight of course even tho I have always been big and have only had this disease for 5years. Doctors are generally not very good at understanding this I don't think because the symptoms vary so much and are crazy. The pain is so debilitating tho and its difficult for family to understand too. Good to be on the site.

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