Talk talk

[letslaugh63]

I know talking is good and a lot of people says it helps with healing or just relieves stress and I totally agree.My problem is I can't really talk to anyone about what's happening to me,family,friends and work if I don't know what's wrong with me.I don't want to offend anybody but I have to say this, I feel like a hypochondriac so how can I talk to anyone and expect them to understand/believe me when I don't really myself.x

[Loopylooby]

I can sympathise with this. I've suffered with various symptoms for the last 11 years but only just got a diagnosis. You aren't a hypoC you know something is not right so they need to find out what it is. I went to the docs and asked to be tested for various things over the years and eventually struck gold with lupus. Don't wait for the gp to be proactive though and suggest things because it just won't happen. Keep going x

[chrissiij]

I concur with everything said. My GP in my teens made me feel like a hypochondriac and then when various doctors found nothing wrong, I started to wonder if I was. What also didn't help recently is that even my other half told me I was, as when we were play-fighting (well, more he was trying to play-fight with a very reluctant moi), I would suddenly yell after he pulled a joint the wrong way and then he would get angry, tell me I was a hypochondriac and say that I always had to make a drama out of things. Well, when I finally got the diagnosis last month, he was very supportive and I gave him a leaflet from Lupus UK, which he read and took in. I asked him if he, the person closest to me, doesn't believe in how I feel, then how am I supposed to believe in myself?

I tend not to talk to my family about it - I can hear them glaze over even when on the phone. If someone doesn't have a disease with such a diverse range of symptoms (wait, so you have inflamed joints, sun sensitivity, a nasty, blistering skin rash, a rapid heart rate AND anaemia? *sigh*) then there is no way they can even contemplate the effect all of this would have on an individual and I think it's easier for them to pretend that these things don't happen. Either that or they just think you're after attention / sympathy.

But that's where we come in. When I first joined this forum, last month, I initially felt so overwhelmed when I started reading posts as there was so much information to take in. But I slowly started realising that everyone here was going through the same range of emotions that I have been, and almost everyone has had trouble getting a diagnosis and been made to feel like they are wasting their GP's time, making them feel quite alone. I am now more able to open up on here and talk to people - whether they like it or not!

United we stand, divided we fall.

[mstr in reply to chrissiij]

Very well said - I think the bottom line is just to trust your own instincts.

[pattismith]

I get so angry when even the consultants that are treating us don't seem to know as much as we do about our illness, and are very unsympathetic towards us. Why can't we be treated by specialist Lupus Dr's who understand our illness ?

[Dumpypug]

Yep, I can totally relate. I thought I was going mad until I got a diagnosis then I wanted to go and see every dr I've ever seen over the last 7 years just to tell them they were wrong.

Keep strong and trust yourself, you know you better than anyone

x

[letslaugh63]

Ty dumpypug x.This has nothing to do with anyone else doctors or otherwise this is how I feel.maybe I am over stressed had a lot going on but now I'm starting again with positive attitude and no drugs so I'm stopping amitriptyline. Don't worry cutting it down fortnightly,see I'm not a stupid person.Hope they find a miracle cure for all of you soon x

[janiceray]

I agree with all of the above.

Take care X

[bam1993]

I too agree, I had my diagnosis in Feb after 7 years of feeling total crap-told it was just 'fibro'-even by Guy's!!! (Although at the end the Doc there did see me in the Lupus clinic) And I felt like a total hypocondriac-as I knew other people with 'fibro' and they only had the odd bad day but mine was constant, then I started getting dry eyes and mouth ulcers. My old Dr of 30 yrs also made me feel like a total hypocondriac last year,when I said to him that I think it might be more i.e.sjorgrens he said there is 'still no cure'-gave me a print-out of 'sjorgrens', and as he passed it to me he said to my boyfriend 'cause Julie likes to read things!' I came away feeling so low, and that it must be ME-that my pain threshold had gone (even though I had had two kids with no trouble many years earlier!) I just thank God for the other GP at the practice(who I have now made my main G.P!) who listened to me and took more blood tests-this time they all came back high....and I finally got my diagnosis from Chace Farm. WE KNOW OUR OWN BODIES-We know when something is not right-no-one turns into a hypocondriac overnight. When I was younger I would go years without a visit to the G.P, and at the end I was there every other week-when I pointed this out to my old GP he said 'I thought you had taken a shine to me Julie!!!' HA! The good thing is we have this site to let off steam-with people that understand because they have been through it thierselves -so hang in there, and let off steam on here if need be. Big hugs to all xx

[teddiebear]

ive got lupus of the face but on and off for yrs my feet are not right they said had had flat feet got soles made for them felt better then my toes dont feel right its the soles that are making your feet go to the front of your shoes dont were them for a few days didnt work back to doctors they be ok in summer i know there not right so know keep going back i am one day they will tell me whats wrong with them

[letslaugh63 in reply to teddiebear]

I too have bad problems with feet I have actually taken a PIC of them bright red with veins popping out at night esp when I finish work I can hardly walk on them.my hands are the same though it's constant with them finger tips very sensitive picking things ,up giving change ,getting dried aggravates them x

[teddiebear]

thank u for your reply going back to the doctors this wk there hurting all the time now just want to know if it is lupus my job is standing up