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AnxiousCarolyn

Sorry to offend any of you but i am dying

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If this very crude guide to having Lupus is anything to go by, we probably all have it!

"So, you think you may have lupus? What should you do now?

Swollen, or painful joints

Do you get a rash when you go in the sun?

Do you get mouth ulcers?

Do your fingers/toes go blue, white or red in the cold?

Have you ever had a low red blood cell count (anaemia), low white cell count, or low platelet count?

Do you get extreme fatigue, even when you've had a good night's sleep?

Have you ever had pleurisy (pain in the chest on breathing in)?

Do you get a red rash on your face, across your cheeks and nose, in the shape of a butterfly?

If you've answered yes to three or more of the above questions, then there is a chance that you may have lupus."

You must have been reading the same site as me! the only one i have on that list is a constant aching/painful feeling in most parts of my body which started last week and nothing will make it go away! but its not flu etc as i feel generally fine the longer the aches carry on the more scared i get. I barely slept last night i have just woke up now and instantly filled with the most torturing anxiety because i have pains/aches everywhere and i know i have not imagined them. I want a test for Lupus but i know my doc will just tell me its OCD and anxiety and its going 2 take appointment after appointment 2 get her 2 listen but i can't go on feelin so scared. In the past the way i have dealt with worries over illness's is have a test 2 make sure i am fine and then that worry goes away caise i do believe the results. Most sites say 95% of patients with Lupus have aches and pains that are constant and are the first few symptons of Lupus and thats exaclty what i have got. I can't stop worrying i can barely sleep or eat its a struggle 2 drink this morning. I just am so seriously scared and i think this is the worst worry i have ever had :weep:

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Try to remember how strong you were yesterday when you deleted the sites, Carolyn. I admire you and respect you for doing that. Could you have a hot bath (my personal cure-all) and soak your aches away?

honey

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I know i deleted the sites but i just had 2 have 1 look at a Lupus site this morning and guess what? i have another sympton but i had it b 4 i looked thats what makes me more scared :weep: i have pains in my chest they come and go and apparently thats a Lupus sympton. I ache and ache and it hurts and i don't know why i ache this much i can't come 2 any other conclusion apart from Lupus. I don't have the flu or a cold or anything and its nothin 2 do wiv my medication as i have bin on it properly for a few days now. The aches suddenely came on Tuesday night can you Lupus suddenely like that? b4 Tuesday i never had a sympton.

I am so sorry 2 bore u with all this i really am. I just don't have anyone else 2 talk 2 :weep:

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Carolyn, what state of mind were you in yesterday when you deleted those sites? You need to get back into that so try to remember how you felt and what triggered you to do it - if it was Ashley's post or any other post, read over it again, and delete the sites again.

There isn't really anything I can add to the excellent advice and words others have said; I do urge you to get information on eating disorders if you haven't already and as Caramoole said please stop taking too many painkillers.

Is there any way you could increase your daily calorific intake without causing you too much distress? Maybe eat more fruit or some smoothies?

Rach xx

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Hi Carolyn,

I completely understand where you're coming from as I have exactly the same worries. Your doctor needs to understand that there is a difference between hypochondria and OCD. I am currently in the same situation - believing I have something despite what I'm being told. As of last week I decided I couldn't go on like this and made a decision to try and override the OCD if you like. You have to try and trick your brain. You believe so much in the lupus - try to believe in the OCD instead. Nothing will be able to convince you that it's not lupus apart from yourself. And it won't be. This is OCD, that's what it does - you have to hang on to that and just think it every time your other worries come up. I hope this gets easier soon. You will be fine.

Jenna x

Some good advice in there Carolyn. However, I think Carolyns GP does know the difference between hypochondria and OCD, she knows this is OCD and I feel she's quite right in refusing to succumb to the requests for tests, as it won't help a jot.

In the past the way i have dealt with worries over illness's is have a test 2 make sure i am fine and then that worry goes away caise i do believe the results

But it doesn't work does it? The test might reassure you that you haven't got Lupus but very quickly that comfort will recede and another "Illness" will take its place...and then another...and another...and another, from HIV to Green Monkey Diseases and so it will go on.

As Jenna says, your real enemy, your real illness is there for all to see, its OCD!

I don't want to minimise the absolute anguish that you feel, I know exactly how absolutely terrifying it is but until you can accept that these fears are OCD based, it will continue to terrorise you every minute of the day.

Accepting it's OCD will not switch off those fears immediately, it will continue to scare you but if you steadfastly live with that fear and firmly relabel it, it will lose it's power.

If you keep giving way to the anxiety and resort to the Lupus sites, the tests, you're buying yourself a ton of pain.

You've been given lots of 'real' reasons for the cause of the aches and pains and in typical OCD fashion, you don't believe them, that's OCD for sure.

Please stop taking the pain killers, delete those links again and try to trust that this is OCD.

Caramoole :)

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I have deleted the links i am tryin not 2 resort back 2 lookin at them again. I just can't stop bein so scared though. I know you are all tryin 2 help and thank u for your advice and support. Do you think i might be suffering these symptons from taking too many painkillers? i stopped last night hoping that the aches would stop 2 but they haven't maybe theres a few less aches but i think theres also a few more in the areas that Lupus affects :weep:

I am very very scared. I know so many times i have wanted 2 end my life but a scare like this has made me realise i don't want 2 die i want 2 stay around for Sophie and watch her grow up. At the mo just lookin at her is upsettin me when i am so sure i have Lupus. I just don't think i can 4 get it until i have a test for Lupus. I will talk 2 the nurse Tuesday and see if she can get me in 2 see a doctor sooner than 2 weeks but it wont b my own doc and who eva it is will just tell its nothin 2 worry bout but how do they know wiv out a test?

Back in December i was diagnoised with Carpel Tunnel Syndrome but i don't have it atall. I went 2 see the doctor with one sympton which was "burning feeling in my hands" and within 2 mins he diagnoised carpel tunnel syndrome. A week later all my fingers were filled with Chilblains and have been ever since and thats why i had burning feelings in my hands many doctors have confirmed i have chilblains 2. My point is he got my diagnoise wrong back then whats 2 say it won't happen again but with something as serious as Lupus?

Lupus 2 me means liver/kidney damage heart failure brain damage etc all the damage you can get which can result in death. I don't want 2 die i really really don't not anymore :weep::weep:

The other week in Weymouth my mood was better i enjoyed being with my family but now i feel unbearable and so so scared will it ever end. I am seriously feeling desperate.

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You're doing really well Carolyn. Good on you for deleting the links again, and I really admire your positive spirit. You want to live, and you will! I do think you could be feeling so ill because of the painkillers and the coming off then back on your meds, plus your not eating enough and having OCD and a young child to look after... With all that going on, there's no wonder you're feeling ill, is there? See the doctor but talk about your anxiety and, if you can, about your eating habits.

You will get through this and you're going to have a lovely holiday in July with Dan and Sophie.

xxx

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Hi Carolyn,

How are you doing? I would like to offer some thoughts in response to the title of this thread which ends with "... but i am dying". I am not saying what I am about to say to be in any way facetious but I say it in all seriousness. We are all dying, every one of us. It is a natural process which begins the day that we are born. It is a contract that we sign with life when we come into the world that we cannot stay and must go when our lifespan is up.

In our modern culture where the whole topic of death and disease is sanitised for us, we can become scared of dying or catching this or that disease. Then our fear sets us up for mental suffering. When we come to realise that death is inevitable whether we have fear over it or not, then what's the point in being afraid anymore? When we consciously and subconsciously accept that this physical body's lifespan is finite, a great worry and burden is lifted off our shoulders. Lupus or diabetes or heart disease or cancer cannot control the patient's attitude unless he or she lets them. You can rise above this fear, which may or may not be actually happening to you. Rememeber the word F.E.A.R. as an acronym for False Evidence Appearing Real.

Take Care,

John

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Thank you i don't like 2 b reminded we are all goin 2 die one day.

I am feeling worse this afternoon. I still ache and feel very sick, bad headache, faint feeling, i also feel so spaced it. I really really am so scared something is wrong like Lupus. My partner and my mum are just not interested and keep tellin me i am imaging it.

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:weep: can't stop crying. I am dying of Lupus i feel so ill. I can't eat because i feel so sick i can barely sit up. I don't believe this is a bug as its been going on for over a week and i seem 2 b gettin more and more symptons as the days go on.

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Guest marky1982

I am feeling worse this afternoon. I still ache and feel very sick, bad headache, faint feeling, i also feel so spaced it. I really really am so scared something is wrong like Lupus. My partner and my mum are just not interested and keep tellin me i am imaging it.

Hi Carolyn

I will tell you from my own experience what feeling sick, suffering headaches, feeling faint and spaced out are a big, big symptom of - anxiety!!!

A few years ago when I started to suffer from generalized anxiety disorder, I was always checking my heart as I suffered palpatations, rapid heartbeat, pounding heart etc. I thought there was something wrong with my heart and went for check-ups, ECGs etc and each time i was told it was anxiety, yet I wasn't convinced, all the time thinking "What if they're wrong?" Yet I found when I did something that really took my mind off it these symptoms went. The more I focused on the symptoms - and the more I Googled them! - the worse they became - anxiety feeds anxiety.

This is just whats happening with you, you're so worried about having Lupus you're matching all your symptoms about anxiety to it.

Mark :original:

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Hi Carolyn

I'm really sorry to hear that you're still feeling so awful. As Honey says, a hot bath really is excellent for soothing away aches and pains. Even though you've been back on your meds for a few days you might still be reacting after coming off them too, on top of all your anxiety.

Please try to never read another thing on Lupus. From what I have read from all these posts I am 100% convinced you don't have it, and that you need to relabel these fears as OCD to dis-empower them, despite the fact you are so scared.

You know how you can read other people's OCD worries on here and think 'Yes, that's the OCD', but you often can't do it with your own - that's the same here. It's so real to you but I read it as OCD. If I told you what I've been really scared of today you'd think 'that's the OCD' and you would be right, only I can't quite believe it - that's what keep it so powerful.

About eating - 700 calories is far less than someone on a crash diet (1000) and that is for people who have fat they can burn - you are size 6/8 - you have no fat to burn to give you any energy. When you're on a diet you produce more adrenalin to keep you going. Cortisol then breaks the adrenalin down, but after a long time cortisol becomes depleted and you can't break your adrenalin down the same, causing horrific anxiety. If you can get some help for your eating then you will give your body a chance to recover, which it will, but only with some tlc from you. :love: I know it is incredibly scary but you should be aiming at 2000 calories a day. A dietician can help make out a plan with you. Bingeing and purgeing will be taking a huge toll on your body, and it feels like hell just doing it.

Can you take your little girl for a lovely walk to get some fresh air or put on a good film to give yourself a break from your anxiety?

Hope you're feeling better,

Take care,

Stella :original:

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I know the headaches and feeling sick cud b anxiety but its the aching i am seriously worried about. I ache so much all over even my fingers ache yet no painkillers help but they do help the headches apparently Lupus aching does not respond 2 painkillers another reason y i have Lupus.

My mind can't cope with this i just wanna cry so much because i believe 100% i have Lupus.

Thank you Stella. We went 2 the park 2 day with Sophie and she loved it i was just so upset thou lookin at her knowin i am dyin. I love her and i don't want 2 leave her. Why is it i am so 100% convinced i have Lupus why can't i 4 get it maybe its cause deep down i know i have it. I know i need 2 eat more thing is body image is so important 2 me i want 2 b 2 thin whats the point thou when i am dyin. I think this worry feels more real and convincing than my orginal liver failure.

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Carolyn years ago my mum was conviced she had Cancer. I was only a baby so don't remember this time. But she made herself ill worrying. She went to loads of doctors had loads of tests. Guess what? NO CANCER!!!!!!! A doctor said to her that worrying is a bigger killer than Cancer!!!!!!!!!! This is about 31 years ago now. My Mum has been ill for a while, but thats something else. To this day she has not developed cancer. No doctor could convince her she just had to trust those around her and believe it for herself.

DON'T LOOK AT ANYMORE SITES!!!!!!!!!!! You can see this is OCD cause all you are focused on is dying. I probably do have Lupus (look at previous posts of mine). So I have looked it up. And guess what? I have decided to focus on the fact that it says in these sites that suffers with treatment can now have a normal lifespan. I have CHOOSEN TO FOCUS ON THE POSITIVE. I get my results in just over a weeks time. Yes I'm scared. But I'm not planning on dying. I will take the advice and medical help given and just get on with LIVING!!!!!!!!!! I think my husband, my children and ME deserve that. :cheer:

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Carolyn

You are a size 6/8 - you are truly extremely skinny, believe me. It's not making you happy though - it just adds to the anxiety because if you're like I was you're worrying how many calories you've consumed and how you can make up for yesterday. What was a good day for me was 800 calories, but it wasn't sustainable - I would be really really 'good' and then all of a sudden I'd crack and binge. Then I'd purge and if someone had stopped me I'd have gone totally beserk. Once I'd purged I could feel 'normal' for a time, unless I'd made myself really ill in which case I had to go to bed and sleep with pins and needles and extremely sore insides. I don't know if that's how it is for you, but however it is I know it's going to be horrendous. The cycle is so totally hard to break, but it is possible with help and you won't get your life back until you do.

I know this is bad to reassure you but here are the reasons i am convinced you don't have lupus:

1

Carolyn

You are a size 6/8 - you are truly extremely skinny, believe me. It's not making you happy though - it just adds to the anxiety because if you're like I was you're worrying how many calories you've consumed and how you can make up for yesterday. What was a good day for me was 800 calories, but it wasn't sustainable - I would be really really 'good' and then all of a sudden I'd crack and binge. Then I'd purge and if someone had stopped me I'd have gone totally beserk. Once I'd purged I could feel 'normal' for a time, unless I'd made myself really ill in which case I had to go to bed and sleep with pins and needles and extremely sore insides. I don't know if that's how it is for you, but however it is I know it's going to be horrendous. The cycle is so totally hard to break, but it is possible with help and you won't get your life back until you do.

I know this is bad to reassure you but here are the reasons i am convinced you don't have lupus:

1 You had a test that was negative in January

2 All your symptoms remind me of mine from when I had the eating disorder, ESPECIALLY the aching joints.

3 Chest pains are classic anxiety

There are others too but I don't want to say them because it's going to make you analyse it more.

You did brilliantly by getting rid of the links to the sites. :clapping:

Take care

Stella :original:

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DON'T LOOK AT ANYMORE SITES!!!!!!!!!!! You can see this is OCD cause all you are focused on is dying. I probably do have Lupus (look at previous posts of mine). So I have looked it up. And guess what? I have decided to focus on the fact that it says in these sites that suffers with treatment can now have a normal lifespan. I have CHOOSEN TO FOCUS ON THE POSITIVE. I get my results in just over a weeks time.

I really admire u 4 bein so brave about this infact i think u r so postive that attuide will help u so much in life i wish i cud b like u. As for your orginal posts i don't know how 2 search 4 them but i was just wounderin why is it u r bein tested 4 lupus? is it u that asked 2 b tested or did ur doctor suspect u had it? i understand if u don't wanna say but i think u r so brave 2 b so calm bout it.

Stella thank u and i think what u say makes sense and i keep tellin myself those things 2 BUT the negative side is so much stronger than the postive side. WHAT IF i am right this time what if i really do have Lupus. What if by the time i see my doc or by the time she believes me the Lupus has got worse.

Thing i keep thinkin is can you just get Lupus on Mon/Tye night this is when my aching symptons began can someone just get it like that randomly one evening.

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Hi Carolyn

To look at my previous posts just click back on the pages and the bottom of this topic page. I'm not brave - but what else can I do. Stress can cause Lupus. So if I don't have it after all, then I don't want to develop it by stressing myself out, do I? As I said I'm not brave but I choose to be strong. No I never asked to be tested. But as you will see in my previous posts I had a blood clot in my lung at 14 weeks pregnant (now that could have killed me) but it was found and treated and me and my baby are alive to tell the tale :clapping: I am undergoing tests to find out what caused the clot. It could have quite simply been the pregnancy. They tested me for Lupus and I have had a positive result. Sometimes that is caused by a virus going around the system at the time of testing. I have had to wait ages for the results - so I have had to distract myself with other things and enjoy my family while I am waiting. Or I could give myself an ulcer worrying. I know which one I would choose. If it is confirmed that I have Lupus of course I will be scared and upset. But I will listen to the medical advice and go on from there.

I have been told that whatever results my blood tests show if I decide to have another baby I will have to inject with blood thinners every day for the whole pregnancy (I had to do that last time when the clot was found). Gosh they hurt. But I wouldn't let that put me off having another baby. MY baby Andrew is so worth all the bruises those jabs left :laugh:

I have had another anxiety caused by the OCD and depression to last a lifetime - so I try to avoid it at all costs.

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In my eyes u r brave braver than me anyway. I had a pregnancy complication 2 i had obstetric cholestasis a problem with my liver and if i ever have anymore babies theres nothin they can do about it and theres a 95% chance i will get it agen. I just have 2 choose 2 take the risk the risk being very likely premature birth or stillbirth and i could never put me or a baby through that so sadly i have 2 accept no more babies 4 me.

As for Lupus i wish i could find sum fink on a website that wud make me realise i don't have it but i can't find anything everything i read suggests i have it. I did have a blood test back in January but it was 2 test kidneys/liver/throyid and full blood count and it came back fine would they of found Lupus in them tests? Also as i said i felt fine up until last Mon/Tue then the aching began the thing is it won't stop and i have never had this b 4! even my fingers ache. I tried 2 stop takin painkillers but i felt worse so i am on them again and feel bit better but i can't live on them. I so want 2 b tested 4 Lupus. I know my eatin disorder screws me up but i take vitamins so i can't b lackin vitamins. 2 day i have bascially eat about 400 cals so far 2 day and i just can't bring myself 2 eat anymore but i don't feel hungry just anxious about Lupus.

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Carolyn are you getting any help for your eating disorder? Please listen to what i'm saying. Even if you have a Lupus test and all comes back clear, how long will it be before OCD has you worrying about something else? Stand firm on this Carolyn. Take it from someone who knows. OCD is a never ending cycle - give in to 1 thing and then it will give you something else to worry about.

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Hi Carolyn

Keep telling yourself it's OCD. I don't think that lupus would come on suddenly overnight at all, and I know I shouldn't be trying to reassure you :blushing: .

400 calories is nowhere near enough to sustain you. Eating vitamins only works if you eat them in conjunction with a main meal too - they need stomach acid to dissolve and you to get the goodnes out of them. Laxatives and any kind of purgeing muck up your salts in your blood, which afftects the ph and makes you feel really ill. Laxatives stop you absorbing vitamins too. Not only that, you're muscles need energy to hold the frame of your body up - you're expecting them to work without energy and that means they produce acid as a bi-product - it's like having a stitch from running but in loads of different places. It also means they are less effective at holding your body up properly which causes aches and pains.

The side-effects of painkillers are going to be taking a toll on you too.

If the aching started on Mon/tue last week it could still be flu you know. I would just say that everything used to ache really badly on me, and Marky was also right when he said that if you focus on the symptoms you feel them far worse - you are hyperviglent to them. If you feel a slight ache you mind immediately says 'lupus' and your anxiety goes into overdrive. It's like when I see dust and my mind immediately says 'lead contamination' and my anxiety is through the roof. It learning to trust that you can relabel it as OCD, which you can.

Take care

Stella :original:

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Thing is apart from the aching i felt ok until 2 day when the headaches etc started. Also when i had flu b 4 it was a different sort of aching. I know my body needs more food but thing is i have lived like this for 9 yrs why within the last week wud i start 2 ache why not b 4 now? Hayley sorry 2 ask u this but do u suffer with aching or anything like that? My impression of Lupus is anyone who cud have Lupus 100% has aching muscles all the time i don't know if i am wrong there. Also these aches i keep gettin are also associated with pins and needles feelin and i can't find anything on Lupus that mentions that. I am so confused as 2 what i shud believe but deep down i just know i can't fully let this go wiv a out a test. Thank u 2 u all 4 your replies u seriously are the only ones i can talk 2 about this.

Stella, as for the painkillers u may b right. I stopped them last night and 2 day the headache and aches were worse so i took them and now i feel worse surely even if i had Lupus painkillers wud give me sum relief is it possible the painkillers are causing the problem? i also just checked my medication and the side effects can be aching muscles tingling feelings etc.

I wud say i have taken between 20-25 tablets in the last few days.

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As for Lupus i wish i could find sum fink on a website that wud make me realise i don't have it but i can't find anything everything i read suggests i have it

You won't find it Carolyn, even if you do your OCD will find yet another 'What If' objection. There are four pages here of people explaining what the real problems are and why it's not Lupus but none have them have reassured you at all. In fact it's probably doing far more harm than good for any of us to help feed your OCD in this way by giving it such attention.

Your real issues are your mental health problems, the OCD, anxiety, PND and Eating Disorder. You can get beyond these but it's up to you. Until you're ready to dip your toe in the water and trust your Doctors, trust Dan and your Mum, trust us, these episodes will continue...there may be good days, there'll be bad days but until you're ready to address these issues, this anguish will continue.

That may seem very hard, it's not meant to be, it's a hard truth to take but it's the truth.

I think it's time we stopped discussing Lupus and concentrated on the real issues.

I know the pain you're feeling, I know the fear but I also know that there's a way out when you can find the courage to face it out.

Caramoole :)

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I don't think not talking about it will make it go away. I am scared more scared than ever b 4. I just need 2 know i don't have it. I don't believe this is just my OCD. I am sittin here with many Lupus symptons that i had b 4 i read about them. I need 2 find out i need 2 know only then i can i move on.

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I just need 2 know i don't have it. I don't believe this is just my OCD

That's because IT IS OCD.

I hate writing posts like this because I know what Hell you're going through but you have to accept what people are saying to you, your Doctor, your Pschiatrist, your CPN, your family, your friends here...you are being duped by a very persuasive disorder. Until you accept that it will continue to ruin your life as it is doing.

If you must research, get your OCD books out and re-read them.

The way out is straight through the middle Carolyn, I wish we could get through to you.

Caramoole :)

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Hi Carolyn

With anxiety the tension in the muscles and stiffness can trap nerves and cause those symptoms. I hold a lot of anxiety in my neck and that can cause pains down your arms. Pins and needles could also be hyperventilating.

Caramoole is right - until you can believe that this is the OCD you will not feel any better. I hope I've not made things worse - I'm really really sorry if I have :blushing: .

Take care

Stella :original:

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