newby experiences

Hi ,like I said ,I am new to all this,and only found out about lupus 4 months ago via a facebook message but having read about the signs and symptoms I am absolutely sure that I have SLE.

When I read the s&s's it was like someone was reading out my personal medical history for the past 20 years.It has come as a great revelation to me as I had always felt (and been made to feel)that all my problems were in my head.I was constantly told that my symptoms were connected with the PTSD and depression I was suffering,that the mind could play nasty tricks on the body(which I dont disagree with as it goes).I have learned since that it was probably the PTSD that set me along this road in the first place.

When I suggested SLe to my GP he stated quite categorically that I didnt have sle as there "wasnt enough inflammatory stuff going on"-bearing in mind I had been suffering from tendonitis of both elbows and left hip for over a year,had dry eye,nasal and mouth ulcers ,breast pain for 6 months(which he said were a mind trick??),general aches and pains and the most unbelievable fatigue from the moment I opened my eyes in the morning.

I ,needless to say,changed my GP and now have one who readily admits he knows little about the disease but has referred me to a rheumatologist on 7th august. I pity the specialist in advance !

I have to say honestly that although I dont want to have SLE ,IF I have it at least I will know what I am up against (more or less!) I prefer that to feeling like I am sitting in a darkened room with my hands and feet bound and a sack over my head which is how I have felt for a very long time.

I long to feel free of the guilt of the tiredness.

I long to be able to hold my head up in a spike milligan way and say "I told you I was ill" (its on his headstone for those who dont know!)

I look forward to the day I can say to my husband "this is what I have" because he really does not have any idea despite my trying to explain(its rather difficult without a diagnosis at this point!even if I DO know).I long for the day we can sit down and discuss how WE are going to deal with it all and work around it.

right ,thats me and my "yet to be" Lupus.

I feel better for offloading ,so thank you !

best wishes to you all

22 Replies

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  • you have just summed up my life in a few seconds of reading this. THANK YOU . I thought i was a hypocondriac for a long time but now i have been diagnosed i need to see if i also have sle as well as dle

    Im on a learning curve but just to speak and share how i feel with others will make a massive difference once again thanks

  • Hi,Well I never thought that folk might actually gain something from MY insight-I imagined it would be the reverse! It makes you wonder how many other people who arent diagnosed are feeling like this? Funnily enough my first GP replied when I suggested SLE " what is this-you are the third woman in a fortnight to come to me thinking she has lupus-is there something doing the rounds on the internet"!!?? then went on to mention my lack of "inflammatory stuff".

    When we are faced with prejudices like this by so called professionals it makes you realise how difficult it is to get an openminded response.I suppose you just have to put your thoughts across and make them listen.Go armed with a list of your symptoms.If he dismisses them change to another GP.I make myself sound like a seasoned warrior but it has taken me 20 years to get to this!! Now I have got my dander up theres no stopping me!!

    By the way-what is DLE?? I am not conversant with the various terms as yet.

  • DLE is discoid lupus erythtomatosus to me its just a word and im hoping to find out more about it to

  • Of course it is.what a wally I am,sorry about that.

  • What a shame it's taken so long to get to see a rheumatologist plus how dreadful not to be taken seriously by your GP. Good luck with your appt in August. I was fortunate enough to be taken seriously by my GP and rheumotologist although I did have a private appt with a rheumatologist who was extremely dismissive of me and told me to lose weight do a bit of yoga and stop stressing! Needless to say I sought a 2nd opinion and met with an NHS consultant who diagnosed SLE and started treatment in feb on my 1st appt. He was surprised the other doctor had dismissed everything so easily as it was glaringly obvious. Thank goodness for him-I have improved every day since, although it's a roller coaster ride some days! I hope you see someone as helpful. Good luck x

  • Thankyou,my fingers are well and truly crossed !

    there is an old saying

    "whats the difference between God and a doctor?..........God doesnt think he is a doctor!!! "

  • Hi there,I hope you get some answers as autoimmune diseases are often hard ti dx,my daughter is 26,was dxd with sle last year now she has been told,we are treating you as if you have sle,but she is still unwell and they say she may NEVER get a. proper dx.

    They now feel she may have multiple sclerosis and disclosure lupus,due to her many many symptoms ,which look like lupus,the drugs have helped alot but not enough.

    So confusing,she has to stay on steroids long term now.

    Hope you get somewhere at you appointment,I dont mean to put a spendthrift on things,but it is horrible,even when you get a dx then it is changed and you may never know what it is.

    My daughter is having regular blood tests and scans on her brain,spinal cord,heart,lungs and kidneys,hopefully in time these will show a change that will get her a proper dx.

    Hope you get some answers at your appointment,take care,Sandy.

  • Sorry it was meant to say,"i don't mean to put a downer on things".

  • Hi Nadine, glad you found us and that you are getting referred,,,,,yay!!. One little word of caution though (as I have had to learn this recently at rheumy appointments) is don't expect answers straight away. I know you have been waiting for such a long time already. But rheumy's have to also delve deep. My rhemy would rather "treat the symptoms" at the moment and not put a label on it yet. This is to ensure that he is treating and looking for everything. This has taken me a while to get my head around as I thought I would get answers quickly too. Like Nanny4's comments above sometimes the answers just take there time in coming. Good luck with your appointment and I hope you do get your answers straight away but try to prepare yourself emotionally if you can just in case. Take Care xx

  • Hi masonry and mstr, I agree with everything mstr is saying,I am fortunate in purely having raynaulds and syjorgens, i am so lucky that I do not have lupus,I have been told,just because I do not have lupus today does not mean I will not get it somewhere down the line.

    I feel really sad for my daughter struggeling with whatever autoimmune disease she has,she says although she doesn't feel 100% she definatley feels so much better since she. has been on Methotexrate and plaquil,also steroids,anti inflammatories and many more meds.

    She told her nurse that she doesn't want to be on steroids long term and she has put on a few stones and they make her feel on edge and have caused her to have brittle bones,but her nurse says until she gets a proper dx she needs to take them or risk more scarring to her heart and kidneys,more swelling on the brain etc.

    She feels angry that no one can tell her what she really has,but her nurse told her they will treat her symptoms and hopefully in the future they will find out what her problem is.

    It must be difficult ,I can only imagine how you must feel,the main thing is that you are going to see a rhumey,who will hopefully give you a dx,if not at least treat your symptoms and make you feel loads better.

    Take care,Sandy.

  • Hi Sandy,I hope you dont mind me asking as I know it is very personal but if your daughter doesnt yet have a diagnosis how come they know about the scarring on the heart and kidneys? Did they do tests regardless?.I always thought that the nhs wouldnt do tests of that nature without a "label" or diagnosis.What I mean to say is-if I go to the "rheumy" and mention the palps,pains and the like (the list is sooo long) will they try to get to the bottom of each symptom individually? or look further into each and every problem with tests to check on the damage (if any) to the organs affected/mentioned? I am just trying to understand HOW they work.I am reluctant to mention every "little"LOL thing but I know they cant get a true picture unless I am totally honest.I have bought a notepad today to start a diary for the week or so left before the appt and to jot down the various symptoms I have had over the months and years.

    regards

    Nadine

  • P.S

    My local health food shop has suggested devils claw -do you know much about it? I am tempted to wait until the appt to ask the rheumatologist

  • Hi Masonry,sorry I have never heard of it but ask your rhumey when you see them,got to be worth a try if they say It's ok!

    To be really honest with you my poor daughter has been unwell for years,she had basically been palmed off with having arthritis,me etc as a child.

    The reason she has had heart scans as she had palpitations all the time and blackouts,so 5 years ago she had a heart scan which was ok,then a year ago she started having problems again,she had another heart scan which showed scarring to her heart valves but no explanation.

    She suffered from a lot of urine infections so her moneys were scanned,the were ok,until a year ago she had another scan which showed scarring,no explanation,she suffered loss of feelings to parts of her arms and legs,a spine and brain scan showed swelling,no explanation,but with the steroids it has gone down.

    She has gone from being ignored by the medical profession to having tests every couple of weeks.she has a lung scan this week to see if her pneumonia has gone,a brain and spine scan next week hopefully,to check that the swelling has not reoccured.

    They say she has all the symptoms of ms but no lesions so they have to keep a close eye as she is at risk of serious disease.

    She does have bad skin disease also which they say is a seperate disease,this is what is complicating her dxs.

    The skin disease has only been about in the last 3 years since she had her twins,her other problems have been ongoing for years,so we can see why it is difficult to get her a dxs.Sandy.

    .

  • Hi.

    My heart goes out to you all with all you are going through,it does.My problems pale in comparison(to my knowledge, fingers crossed)

    When I am sat feeling sorry for myself I will think of the poor folk who are worse off-its very sobering-thank you

  • Hi both, loved reading your thread above. I kind of think autoimmune conditions are difficult to separate out as, I am now learning, they often share the same/similar symptoms. Also as my rheumy said sometimes other things may evolve in time such as an overlap condition. There is a good article by the way in the Lupus UK out now on overlap conditions. I also think there has to be a degree of medical professionals also protecting themselves as it could be so easily to diagnose wrongly. For example, I fit all the lupus symptoms and positive ANA and CRP, however if this was just treated in isolation then there would be no further checks for schlerderma, polymyositis, RA , and the neuro nerve conduction tests that I am to have etc. It has taken me ages to get my head around this but I'm finally there. I also felt reassured this week when my rheumy contacted my GP to let him know my CRP was raised and if this does not go down then this will need addressed. He also referred me onto an endocrinologist when nodules were found on my thyroid too. They also need to find the right meds to suit each problem. So, for example steroids may suit some conditions whereas it could cause damage to others. I am now learning not to 'hang my hat' (is that the right expression)? on having a firm diagnosis as yet, confident in the belief that I am being treated very well medically. I still have days when I think it's so frustrating not to have a diagnosis, but then I think actually I am being treated and they are taking me seriously. I look at it all now as a safety net that I am getting regular treatment and checks. I do think the 'label' is useful in explaining to others what we have so that they actually understand what we're going through. It is also useful to raise awareness of lupus and for benefit purposes. I guess it's really about if I can't change something then I have to change the way that I think about it. It will be great to hear how you get on Nadine and Sandy my thoughts are with you and your daughter. Regards M

  • Hi M and Nadine, I agree with what M is saying,I couldn't have put it better myself,I just went the long way round,ha ha, I was trying to post a message back to you earlier Nadine but I was having problems with my mobile phone network,(it is rubbish network).

    I hope you get some answers when you see your rhumey,let us know how you get on,write everything down you possibly can,keep it for any other appointments you may get,maybe one consultant may not take much notice of your diary/notes but another consultant may be grateful that you have it all written down,that's what my daughter found.

    I have to agree with M also,as I say I am the fortunate one here,but I feel for you all,I see the frustration in my daughter,not having a proper dx is a nightmare,but there isn't any more that can be done until something else shows in her blood or scans,the positive in all this is that she finally after years of hellish fatigue she finally does not feel like she can no longer carry on,her skin sores are much much better,her aches and pains are far less,she may have lots of negatives but at least now she has lots of positives.

    I hope all goes well for you both ,keep me posted,Sandy.

  • hi like you i am new to all this AND THANK GOD FOR THIS SITE AND THE PEOPLE THAT SHARE THEIR EXPERIENCES!!

    About 25yrs ago i was dignosed with I.T.P ( after test the result was my marrow bone destroys my platelets) this was a frustrating time after months of my GP at the time telling me my feeling of being unwell ireguluar bleeding was all in my head, once i was dignosed i changed my doctor. i had reguluar hospital appointments and treatment.

    The years to follow were up and down tiredness, exhaustion, my joints swelling, pain, coldness, feet forever cold going purple, red in colour, all just past off as one thing or another, even by my family and friends, to the point i was screaming inside and went into spouts of depresion because maybe it was me and it was all in my head.

    A few years later i was rushed in to hospital couldnt breath, pains in my chests a number of blood tests were done and the gas test, i had 2 massive blood clots on my lungs, which no one could understand because with I.T.P its the opposite. Sorry this is a long story and i am trying to keep it short, but hey ho it seems after learning about Lupus its complicated to say the least!!

    Well after getting over that spate, another blood clot on the knee, no one could understand so why would i? moving on from here ive had no end of pains in my joints were they swell like balloons, cant walk, ive been told arthritis, bad stomach pains and upset dignosed with I.B.S, constantly feeling exhausted wen i wake up i cant get my body motivated it takes me ages, sometimes dont get dressed for weeks, weight gain, My Gp sent me packing with anti depresents, till one day i said enoughs enough and more blood test, results come back, i had an under active thyriod and high colestral. Great on medication im gona get back to my normal self!!

    Oh no! still 4 years ago i was rushed to hospital it was a hot day i couldnt breath, my skin felt like its was on fire and smuthered in a rash over my chest and neck to chin that was always put down to my I.T.P, i was dignosed with the begings of c.o.p.d, later tests showed this was not true so they put it down to my asthma getting worse.

    For the past few years ive been back and forth to G.PS with my feet, joint pains, rashes, you name it, anti depresents, pain killers so iv struggled, cried, screamed and basicaly put up and shut up!!

    4 weeks ago i went to get out of bed i needed the loo, my days!! the pain i screemed my hubby jumped out of bed wondering what the hell was going on? 3 days i was like this so off he dragged me to casualty against my will, why would i want to go to be told its depression or arthtis? well we sat to be called by a female nursing practioner whe said ho at our age it happens aches pains, arthtis off i was sent with the advice take pain killers, a few days later it moved to the other knee i couldnt take no more and i think my husband was that close to throwing me out the window, i couldnt walk, eat, sleep, so now his desperate and takes me at 5.30pm to my new G.P oh my word this women was having none of it, blood tests, talking to me, oh i cried she was talking to me, can yo believe that?

    Well she took no nonsence i refused to go to hospital, and my husband agreed to take my bloods urgently to hospital. the doc thought bad infections nothing to do with arthritis, but 12.30pm, she called us said they phoned her and i had to go straight to hospital the bloods came back high, suspected, blood clots!

    we got to hospital, i had a registra and another doctor waiting for me, i was asked so many questions about colour of my feet, my medical history, i had dark blue marbeling down my legs, asked about my underactive thyriod. my I.T.P and he asked me what i knew about LUPUs, i knew nothing!! I had the fluid drained from my knee, i have my 1st appointment with a rheumatoligist on the 15th august, I sent my GP the biggest bouquet to say thank you, BECAUSE SHE LISTEND !! I wish you all the best of luck and dont give in, its hard its frustrating but were in it together xx

  • Hi ,thanks for the kind words.So many people go through years of agony before someone even considers lupus.Its incredible and very sad to think of all the pain .

    I started a diary a couple of days ago to take with me to the rheumatolgist appt and I am so sick of doing it already! I feel like its just reminding me of how ill I feel when all I want to do is crack on and get my life back.Its there in black and white you see and its not pretty reading.I have been thinking -that little thing or this little thing is hardly worth mentioning as it seems so unimportant in the big scheme but I know I have to do it.Its so depressing. On top of that the Gp has suggested I change my antidepressants to amytriptyline as it has been found to improve painful joints in SLE but to get to that point I have had to cut down to nothing on my usual happy pills and its very difficult and I am so tempted to resort back.The thought of less pain is whats driving me on with the new meds.

    If I didnt have my 9 year old to entertain I would curl up under the duvet and get back out when everythings over!

    Hey ho .they say what doesnt kill you makes you stronger!

    take care

    nadine

  • Hi nadine, I have been taking amitrypyiline for years,my daughters also take it for muscle spasms,we all find it helped us.

    Hope it helps you to.

    My other daughter takes happy pills ! Bless her ,but she also takes amitrypyiline,she takes prozac for depression,due to severe spine/knee pain.

    Sandy.

  • Hi Nadine - I had a wry smile when I read about your diary! I have been attempting to do one since the start of the year (on the suggestion of my GP). Like you say - it makes depressing reading - and some days I've been too ill to even bother! So - after the Rheum took little notice of it on my last appt (admitted their time is precious!) I have made the decision to only write about the GOOD days (what I managed to achieve...) and give the other days a simple score out of 10. Then, it is possible to work out some of ratio - mine is about 2/3 good days to 8/9 duff ones.

    Amytriptyline is known to be an effective muscle relaxant, as well as anti-depressant - so hope this works for you. However, if you find, after taking it for 3/4 weeks that you are having unpleasant side effects (it gives me a "thick head" feeling) then there's Nortriptyline, which is an alternative.

    Thank heaven for your nine-year old......

    Here's to kicking the pain.....

  • Hi ,that suggestion seems more logical than the full diary-what a good idea!thanks

    The other thing about amytriptyline ,I have a hangover anyway til about 11am most days(but not due to alcohol-I stopped drinking completely 6 months ago!despite being sorely tempted on occasions! )

    I am also 3 days off stopping my regular happy pills having stepped them down to nearly nothing so things are a bit fraught here!

    anyway,pain wise this is a good day today so I had better make the most of it !

    thanks for the wise words

    have a good day yourself

    nadine

  • Hi Nadine..... has your Doc advised you to stop taking the "happy pills" ? Sounds like it, if you are phasing them off gradually. Not all anti-depressants have a "cold turkey" side effect on stopping them.

    Something else I've learnt on here is that Turmeric capsules also help to "lighten your mood" (for want of a better expression) - I was rather sceptical about this at first, but having taken them for about 3-4 weeks now, I can feel the beneficial effects....sunshine may have something to do with it as well! Nothing like natural Vitamin D!!!!

    Managed to survive two Car Boot sales (as a seller) this weekend. We are having a really good clearout (very good for the soul....). Unfortunately, I forgot about the Factor 50 - and so I have a red face and neck tonight!

    Hope the Amitryptyline helps....... have you tried singing?

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