Now completely flumoxed may be here under false pretences!!!!

Hi folks,

Has anyone reached to the point of 'what are they going to call it today?'

I've just got back from Rheumy, and am completely and totally confused. Bloods show irregularities and I do have two types arthritis plus CTD. Expecting to have a confirmed lupus diagnosis today, now to be told it's also chronic pain syndrome, though I have lupus symptoms but not blood marker. My last blood test was 7 months ago, their fault not mine,so today they emptied an arm...ten phials!!!

Isn't Chronic pain syndrome the same as saying you're making it up?...I wish!!??!! How much is an oscar worth these days?

Totally confused, mega tired after traipsing around, and a little tearful as I'm still dangling.

8 Replies

  • Lupus is a connective tissue disease so you probably are in the right place and if it helps to be on here then you are. Things take time to unravel with these conditions so hang on in there, use the site. CTD is a diagnosis and it can be ra, lupus, myositis, schlerderma etc so they are just in the process of checking it out......hang on in there and try not to doubt yourself x

  • Thanks mstr you're right.

    I know from a number of blogs that there's a lot of frustration with diagnosis, guess I was setting the bar too high, too soon. Always was impatient, more so now I get grumpy quicker!

    Going to make my G.P's words my mantra...

    'My symptoms are my symptoms nobody elses'.

    Take care and thank you


  • Hi lizzydrippin

    keep your chin up love, I know what it is like wanting to put a label on something to hope that you can get a diagnosis so it can lead to a successful treatment, I am hoping that you haven't got lupus as it is a pig of a disease and maybe the docs will find something else along the way. Have they looked at fibromyalgia as a lot of the symptoms are very similar? (and sometimes go hand in hand) Your G.P. sounds like a very wise person and I am lucky that I have one of them too and she helps me get through.

    Before I had my diagnosis I was having tests for all sorts of things from cat scratch disease to leukaemia which was well scary. I started to write a diary of things that happened - even little insignificant things like a dry patch of skin which a biopsy was taken from and I got my positive diagnosis from. So keep going and have a stress pillow so when you feel like having a scream cover your face shout and scream into it then beat hell out of it - it works for me.

    Good luck and I hope you get some answers soon so that you can be on the mend shortly


  • Hello madmagz

    Thanks for the encouragement.

    You're also right about wanting a label...they've managed to do that with arthritis(s) not sure on the plural and ctd.

    Idiot that I am, forgot to take my diary with everything in. Fever temps etc including piccys on mobile phone! Even though I got everything ready the night before, I still forgot.

    I think this is part of the frustration, I've had a lot of tests too as my hands sometimes look as though I've got red gloves on, and my face like a red mask!!

    Stress pillow's a good idea too.

    Hee hee I hope folk in flat upstairs don't think I'm enjoying something else!!!! Ha Ha sense of humour returning.....

    Take care x

  • lizzydrippin you are welcome, let the neighbours wonder, it'll give them something to talk about if there's nothing on the telly! lol ;-)

    What a bummer that you forgot to take the things with you when you went to the hospital, I have a handbag like a suitcase so most things go most places with me and my leathers have lots of pockets if I go to an appointment on the motorbike. I can sympathyse with your hands and face, my hands were in such a state recently it looked like I had plunged them in hot fat and the skin was coming away in large blisters it looked awful - in fact most of my body was covered in the same sores and it was very painful. I wear leather gloves outside now to stop the U.V. rays getting to my skin and cotton gloves indoors with cream prescribed by the hospital on my hands. I have got rid of all low energy bulbs and flourescent lighting in my house as it made me worse, I wear at least a factor 50 sun cream on my face as it keeps the rash at bay on my face and I stay out of the sun as much as possible. The weather was one of the things that I noted in my diary and I realised I am very photosensitive hence changing my lights indoors. There is plenty about this on the internet. You may have noticed from the way I write and my first sentence in this reply that my sense of humour gets me through lots of this especially the frustration that comes with the "mental blocks" that we get. I am glad that your sense of humour can help you see through the devil within, when my hair all fell out my partner and I stood infront of the mirror we are bikers and he shaves his head....I said we look like a pair of boiled eggs! ha ha ha

    Keep that chin up and those neighbours talking ;-)


  • Hi lizzydrippin - yes me too - I know exactly how u feel, I have been diagnosed with sero negative connective tissue disease (lupus like!) I also have cervical spondylossis which is causing radiculopathy and neurological dysfunction. I've been going through this debarcle for 22 years cept last February started to go really down hill, got out hospital 20th April this year for suspected stroke (it wasn't a stroke thkfully) and been housebound since then as these neurological symptoms are playing havoc with my legs and speech and cognitive dysfunction. I've done my own research since last year as my 1st consultation on NHS was about 6 months waiting which I found hard. I present like auto immune bilateral joint arthralgia, livedo reticularis, sicca symptoms, hair loss, etc etc my blood markers are negative. Trials of prednisolone helped greatly and so has the planquinel - for the neuro stuff - neurontin/gabbapentin has been added!! I just want to say over the years I too had the chronic/sensitised pain label given and was put on amyltriptalene - which didn't help. After the birth of my last daughter my pelvis separated and I had to go see obstetric osteopath who told me there wasn't much of me that was in the right place and that I had scoliosis also - I saw osteo for 6 years and finally I'm straight - so kinda what I'm saying is I was in pain because nothing was in the right place not cos I had a jammed on pain centre!! Thankfully my Osteopath knows me better then anyone as he's had the most contact with me, he noticed my purple feet and livedo and said I was presenting like an autoimmune - anyway I guess what I'm trying to say is never give up and always believe in yourself!! I hardly go to my GP as got fed up with being fobbed off - I'm still waiting for 2nd NHS appt a year on. I've been going privately to see rhuemy since December 12 cos my quality of life has gone down hill and more recently the neurologist. I do have moments of utter frustration where I want to scream, but I just don't have the energy! Lol! I'm wearing blinkers atm as the neurontin I'm taking will take 3 weeks to start working before they will up it again. Even then I'm not sure if I'm heading in the right direction!! I'm not giving up because not only do I have a long list of things I would like to achieve (2ndry list) I have the most amazing family (primary list) that I'm fighting to be well enough for. Keep yr chin up lovely - and always believe in yourself and when you have those moments of doubt - this is the place to come :-) love and well wishes xxxx

  • Hi jo883

    Thank you so much for sharing,

    'Me, Myself and I' will carry on the fight.

    Hopefully increased Plaquinel will help more in the future than it has done over past 6 months.

    Best wishes to you and yours


  • Hi lizzydrippin,

    Would just like to add a word to the wise advice already given here. Anybody who is sick deserves to have that addressed. Doctors need to put labels on things because there are protocols they're obliged to follow. So, in a sense, medicine has its own rules and responsible doctors follow these rules. However there are principles that are supposed to guide physicians in every instance: one of these is to promote the well being of others. Of course it's important that doctors find out exactly what's wrong with you, but if they can't put a label on your problem, if your symptoms don't fit into a neat diagnostic package, you are still suffering. Good doctors will not ignore this fact. Pity the poor doctor, though, who has to decide on appropriate treatment when the picture is so confusing. The one thing that cannot happen is that you be turned away or somehow made to feel illegitimate because you have a confounding medical profile. I hope the confusion is cleared up soon--but if that doesn't happen I hope the doctors who treat you keep in mind the basic principles that guide their profession.

    All the best.


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