View Full Version : think i've found my problem :(
i finally think i may have found what's wrong with me and what's causing the horrible joint pains, bodyaches and headaches. i mentioned in previous posts that i've been suffering from a facial rash but i never made the connection and today i've realised that my rash has all the hallmarks of a lupus rash and my symptoms match up as well :( i'm very frightened and scared as to what the future holds if this is Lupus but it seems all too obvious now i've finally made the connection.
When i was at hospital they took blood and urine tests as well as a chest x ray which were all clear but after talking to one doctor about my joint pain and rash he started asking questions such as does my rash worsen in the sun? and have i had any blisters or ulcers in my mouth? i now realise he was making a connection to Lupus. he took some blood and said they were going to test for rarer problems which may be occurring but i'm yet to hear anything back 9 days later. They said my results would be with my GP who i'm scheduled to see on Thursday
i've been really achy today and after reading up on Lupus i'm petrified :(
i've included some links to photos of my rash on different days it's flared up, apologies they aren't very pleasant to look at and i'm looking worse for wear.
http://s21.postimg.org/c6nkoaw2v/image.jpg
http://s21.postimg.org/nt7opfjdz/image.jpg
http://s21.postimg.org/d7ntdfd2f/image.jpg
You don't look too bad at all to be honest it just looks like teenage acne.
i'm 21, it's not acne i don't get spots anymore i stopped when i was about 17. i really don't know what it is but it seems very familiar to a Lupus rash and it would explain my joint pains. i could upload further pictures but the rash is mainly on my cheeks and over my nose fitting in with the classic 'butterfly rash' :(
Hello Dave,
To be honest you still do not know what's causing your problems so try not to jump to conclusions. from your googling I'm sure you know the statistics of Lupus? 90% of cases are found in women, which I don't think that's what you are ;)
Funnily I have a rash today going down the back of my neck and around my shoulders and chest. I could attribute it to what you described but I've rationalised it too a new bath salt I'm using. << Oh dear I just realised what I wrote there. By bath salt I mean the healthy type!! :doh:
I hope your feeling better soon, you deserve it :)
HealthAnxiety12
19-02-14, 00:57
That really doesn't look like a Lupus rash, Dave. It looks like some kind of eczema or acne that probably resulted from stress.
some of the photos are of just one side but in general it only affects my cheeks and nose and it would explain a lot of the joint pains i experience which seem to come when the rash is at its worse (flaring) right now the rash isn't too bad but is still visible http://s15.postimg.org/5ggz5mubf/image.jpg i'm very nervous about going to the doctors on Thursday and hearing what these blood tests have shown. if the tests haven't been done it's just going to be more uncertainty to go through as well whilst i await answers
HealthAnxiety12
19-02-14, 01:05
Your skin looks like it's slightly flushed, Dave. I've had that too on my ears. If you're having hot flashes and sweating a lot like I am then it makes sense that you would have flushed skin. It's on the list of anxiety symptoms as well.
i haven't really had the hot flashes or sweating for a while, i only seem to sweat on my palms or the soles of my feet. the nurses even noticed it when i was in hospital without me realising and brought it to the attention of doctors. tonight i'm feeling very ill and nauseous, i wish this would stop
Hi Dave, I agree with the others; I wouldn't necessarily assume from your photos that it's lupus either. However, even if it is, I have known a couple of people who actually have lupus and these days there is such good medical care and drugs available that it can be very well controlled and you can lead a normal life. Try to keep an open mind until you see your Dr, but remember even the disease you are afraid of is certainly not a death sentence.
The doctor said it could possibly be lupus but they'd done an 'ANCA' test which was fine, apparently this is one of the tests they do? She said I probably need further tests from my GP but I don't understand it all or what it really means
Reminds me more of rosacea than anything.
I don't think you have lupus, Dave, and I think even if you did you'd really want to get your anxiety treated. How about starting on that?
I am on medication and receiving well CBT for my anxiety but it doesn't stop the fact I have a malar rash and my joints and muscles are aching from head to toe: hopefully my GP will give me further tests tomorrow but I don't see how it won't be lupus, even the doctor at the ER today suspected it and the ANCA doesn't really detect lupus
I sometimes think we should create a "What doctors say/what doctors mean" vs. "What people with health anxiety hear" chart. A doctor wanting to rule out lupus isn't the same thing as a doctor suspecting you have lupus. No, the ANCA test doesn't really test for lupus, but the ANA does, and presumably you either just had it or will have it.
The rash in your pictures does not seem to follow the pattern of a malar rash.
Write a list of absolutely everything you want to ask the doctor about for when you see him tomorrow. :)
The pictures aren't particularly great but in general when it flares it forms the shape of a malar rash and the joint pain and aching muscles aren't really typical of anxiety, I keep getting the sensation of cold raindrops on my skin. I understand us anxiety sufferers fear the worst and sometimes reword what we're told to feed our fears but I'm being serious, the doctor said she thinks it might be lupus and to get further tests from my GP. I don't know much about lupus all I know is it can be very serious and there's no cure for it
Joint pain and aching muscles can be attributed to anxiety, I get neck aches due to tension quite a lot :)
"Might be lupus" and "suspects its lupus" are two very different things, for one :).
I don't think you have lupus, but many people with lupus struggle less than the people on this board. I think finding a way to treat your anxiety is going to be important either way. Are you looking into ways to do that?
How do you know he has anxiety. Perhaps he is just a young man concerned about physical symptoms and feeling awful which is making him anxious, this is totally different from having anxiety.
i've said and i keep saying many times i'm having CBT and taking anxiety medication but it's not helping me or my physical symptoms. a malar rash is not a symptom of anxiety. i have been told i suffer from anxiety but it seems i'm now edging closer to a diagnosis and im very frightened at my symptoms and what the future holds for me if this is Lupus as i know it's not curable and can kill at any point
Dave...I have just googled Lupus on the NHS website. It is not a terminal illness, it is very treatable and people still manage to have a full life with it. It's like any illness, some people have asthma which can be mild or sometimes life threatening. You could get a cold which could turn into bronchitis , but these are risks we all live with, no matter what illness you have. I could get a cut which could turn septic, give me blood poisoning and die, but I can't live my life worrying about everything.
You have got yourself in to one hell of an anxious state, you are catastrophising, and you really need help with your anxiety, whatever the outcome of your health. I am sympathetic, because I have had the most crippling health anxiety at times (going through it a bit now) but I know that googling and looking for reasons does not help.
Go to your Doctor, tell them about your anxiety as well as your symptoms and then try to trust what your doc tells you.
---------- Post added at 19:57 ---------- Previous post was at 19:54 ----------
How do you know he has anxiety. Perhaps he is just a young man concerned about physical symptoms and feeling awful which is making him anxious, this is totally different from having anxiety.
I'm sorry, but you are not helping Dave, you are feeding his anxiety. He may well have an illness, but he also has extreme anxiety which also needs treating.
I am sorry but you are not helping Dave either as you are telling him its just anxiety. I am trying to help Dave by telling him he needs to get his illness, if this indeed is an illness sorted out. He may not be that anxious a type of personality at all, but keeps getting told he is.
---------- Post added at 20:13 ---------- Previous post was at 20:11 ----------
Dave...I have just googled Lupus on the NHS website. It is not a terminal illness, it is very treatable and people still manage to have a full life with it. It's like any illness, some people have asthma which can be mild or sometimes life threatening. You could get a cold which could turn into bronchitis , but these are risks we all live with, no matter what illness you have. I could get a cut which could turn septic, give me blood poisoning and die, but I can't live my life worrying about everything.
You have got yourself in to one hell of an anxious state, you are catastrophising, and you really need help with your anxiety, whatever the outcome of your health. I am sympathetic, because I have had the most crippling health anxiety at times (going through it a bit now) but I know that googling and looking for reasons does not help.
Go to your Doctor, tell them about your anxiety as well as your symptoms and then try to trust what your doc tells you.
---------- Post added at 19:57 ---------- Previous post was at 19:54 ----------
I'm sorry, but you are not helping Dave, you are feeding his anxiety. He may well have an illness, but he also has extreme anxiety which also needs treating.
You have got yourself in to one hell of an anxious state, you are catastrophising, and you really need help with your anxiety, whatever the outcome of your health. I am sympathetic, because I have had the most crippling health anxiety at times (going through it a bit now) but I know that googling and looking for reasons does not help.
Nonsense, he sounds very sensible to me.
Good luck with your tests results anyway Dave. Hopefully you can find some peace and comfort soon. I know that what you are going through is horrible.
How do you know he has anxiety. Perhaps he is just a young man concerned about physical symptoms and feeling awful which is making him anxious, this is totally different from having anxiety.
It's not totally different from having anxiety, actually. Anxiety doesn't come with little tabs according to the validity of the cause--there are people with diseases who are deeply anxious about them, too. Are you going to tell them they don't have anxiety?
Dave will do what Dave will do, but people posting here risk losing big parts of their lives chasing after a certainty that they're not going to get. Nobody's telling Dave not to get the ANA test; that's a logical next step in this case (though in some cases further testing isn't indicated just because one is in physical distress). But ignoring the fact that he's really anxious about the possibility of disease is ignoring what's really interfering with this life right now, and that doesn't help him.
---
Hang on, you were just on earlier in this thread telling Dave it just looked like acne to you anyway. Now I'm really perplexed about what your position is here.
HealthAnxiety12
19-02-14, 20:43
I'm not saying that Dave doesn't have a health condition and I personally think that it's awful that the doctors have refused to give him an MRI, but he's had sixteen doctors say the same thing: it's all anxiety. Are they right? I don't know. I'm still struggling to come to grips with my huge amount of physical symptoms and I'm not even suffering as much as Dave is. It's good that he continues to seek help, but eventually he's going to have to accept the diagnosis if the doctors continue to find nothing else wrong. He and I have a lot of the same symptoms and I have the same diagnosis (severe somatic anxiety) as he does, not Lupus. I even developed one of his symptoms simply by reading about it.
Seal (the singer) has lupus. :)
HealthAnxiety12
19-02-14, 21:56
Seal (the singer) has lupus. :)
So does Selena Gomez. As far as I know (and I admit that I don't know much about it because it's not one of my feared illnesses), Lupus is not as scary as a lot of the disorders that we frequently worry about on here. I'd rather have Lupus than MS, and I'd definitely rather have Lupus than ALS or a brain tumor! (To be fair, I'd rather have basically any condition than ALS, a brain tumor or severe ME.)
it's very scary when you read about the effects it has on your body and the way it is typically worse and more aggressive in men. The last 2 days i've been really nauseous and aching everywhere, now i'm worried that lupus is effecting my insides
HealthAnxiety12
19-02-14, 22:07
it's very scary when you read about the effects it has on your body and the way it is typically worse and more aggressive in men. The last 2 days i've been really nauseous and aching everywhere, now i'm worried that lupus is effecting my insides
I know that Lupus is a scary condition even if it's not as bad as some others. I really hope that you don't have it. I have no doubt that some of your symptoms are due to somatic anxiety because Lupus alone doesn't cause everything that you've listed in previous posts, and it seems unlikely that you would develop somatic anxiety and Lupus at the exact same time (though I'll admit that it's possible), so I do think that anxiety is a more likely explanation for your symptoms. The rash is rather puzzling, though. It does resemble a Lupus rash a bit but it also doesn't because it's all over your face instead of only on your cheeks. Have any other doctors offered an explanation?
it's not usually all over my face, it just affects my cheeks and spreads over the bridge of my nose. it's a lupus rash plain and simple, it's very distinctive. the joint pain is so bad today i can barely move
HealthAnxiety12
19-02-14, 22:21
it's not usually all over my face, it just affects my cheeks and spreads over the bridge of my nose. it's a lupus rash plain and simple, it's very distinctive. the joint pain is so bad today i can barely move
Wouldn't a Lupus rash not sporadically move around to other areas of your face, though? Again, I'm glad that your doctor is testing you for Lupus to see if you actually do have it, but I almost wonder if your joint pain is worse today because you've convinced yourself that you have Lupus and you know that Lupus causes joint pain. You and I both have symptom shifting, and that is a hallmark of health anxiety. Today my throat feels tight, I've had some mild skin sensations, pressure in my head, I can barely eat and one of my joints was hurting earlier. A few days ago my primary symptom was numbness in my hand, and a week before that it was mostly aching arm and hand muscles.
Tell me this: Can you induce symptoms just by thinking of them?
no i can't induce symptoms by thinking of them they just seem to come independently. last week i had a constant right hand tremor this week the rash is flaring constantly with terrible joint pain and nausea. the rash has gone on for a while though and even in old pictures before this anxiety flare up i've noticed a butterfly type rash across my cheeks which i never realised
HealthAnxiety12
19-02-14, 22:49
no i can't induce symptoms by thinking of them they just seem to come independently. last week i had a constant right hand tremor this week the rash is flaring constantly with terrible joint pain and nausea. the rash has gone on for a while though and even in old pictures before this anxiety flare up i've noticed a butterfly type rash across my cheeks which i never realised
Are you sure that you can't induce them? You can't think to yourself, I'm going to feel water droplets now or I'm going to feel my muscles ache and then feel them? I just did that and it worked for me. It doesn't work with every symptom, but it does often enough to make me think that this all or at least partially in my head.
What were your vitamin B12 levels? If it was in the "low normal" range then you could still have a deficiency and show neurological symptoms. There's a lot of overlap between HA symptoms and vitamin B12 deficiency symptoms, though. Maybe ask your doctor for a urinary MMA test if you haven't already had one?
no i can't induce them they just happen randomly when i'm thinking about other things which isn't a good sign i guess. i have quite a high pain threshold but i'm in agony today and twitching everywhere. right now my leg feels like it's burning.
i'm not sure what my vitamin levels were, i just got told everything was fine with my blood and urine tests, they didn't really elaborate
nomorepanic
19-02-14, 23:02
You will find out tomorrow I assume?
So just see what happens then re-evaluate things when you know
HealthAnxiety12
19-02-14, 23:03
no i can't induce them they just happen randomly when i'm thinking about other things which isn't a good sign i guess. i have quite a high pain threshold but i'm in agony today and twitching everywhere. right now my leg feels like it's burning.
i'm not sure what my vitamin levels were, i just got told everything was fine with my blood and urine tests, they didn't really elaborate
Ask what your levels were. A lot of doctors are clueless about B12 and some people display symptoms even in the so-called "low normal" range. Are you a vegetarian by any chance? Are you always unbalanced when you move around?
MRS STRESS ED
19-02-14, 23:23
MrDave simple answer yes you can bring on symptoms ,your mind is that powerful it can mimic illnesses and what makes you think you have lupus do you not think its down to your anxiety ,you should put more energy into getting better instead of looking for illnesses that you might have or might not ,people here are giving you real good advice please listen to them
Some of the symptoms may be a reaction to the medication?
MrsStressEd- i think i have Lupus because i have a Lupus rash on my face and i'm experiencing terrible joint pain and muscle aches, not mild, that bad i'm taking painkillers and still unable to move
HealthAnxiety12
20-02-14, 00:00
If you do have Lupus then your chances of having a vitamin B12 deficiency are actually increased. Lupus + vitamin B12 deficiency + severe anxiety seems to explain all of your symptoms, but that doesn't actually mean that you have anything but the anxiety. I don't want to get your hopes up about B12; I thought for sure that it was the cause of all of my problems and it turned out that it wasn't.
nomorepanic
20-02-14, 00:29
As I said before - you have not been diagnosed yet so let's wait and see what happens.
If you have it then you will deal with it
I know two people very well who have lupus and live their lives normally on medication. Let us know what happens, but either way you have lots of support here.
MRS STRESS ED
20-02-14, 15:06
MrsStressEd- i think i have Lupus because i have a Lupus rash on my face and i'm experiencing terrible joint pain and muscle aches, not mild, that bad i'm taking painkillers and still unable to move
So thats that then you have got lupus theres no doubt ermm see what your test say first before asuming the worst
Rennie1989
20-02-14, 15:16
You can get acne from stress and from being generally low spirited, I get awful spots and mouth ulcers for that reason.
They aren't spots they're flat patches of skin. Today I saw my doctor who again said it looked like Lupus and ordered further tests. My whole body aches terribly today and I can't get out of bed again, this can't all be caused by anxiety. Waiting for the results is a horrible process especially when I'm this ill
nomorepanic
20-02-14, 15:29
What tests are they doing?
ANA, kidney function and something else I'm not too sure about. Really frightened and I'm in a lot of pain
---------- Post added at 16:55 ---------- Previous post was at 15:44 ----------
I really don't feel like I can continue living if it's lupus, it will affect every aspect of my life, it's in curable and causes blood clots, strokes, heart attacks, kidney disease, seizures, hair loss, joint destruction, fatigue, sun intolerance. I just can't do this anymore , ever since I got head butted my life has fallen apart. I can't stop crying :(
Mrdave, my MIL has Lupus and lives a pretty normal life. She has not experienced strokes, hairloss, kidney decease etc....
Please try to put things into perspective.....starting by you have not been diagnosed yet, and if you do have it, it is very manageable. I will be praying for your recovery.
It's a lot worse in men than women apparently. I'm
In absolute agony at the moment and if this is an early stage I dread to think what it's going to turn into over time. I don't feel like I have any fight left in me
HealthAnxiety12
20-02-14, 17:48
If you do have Lupus, Dave, then I'm sorry that the medical system has failed you so tremendously.
Every doctor I saw I mentioned the rash and joint pain to but not one made the connection till now, over 3 months down the line
nomorepanic
20-02-14, 17:50
Why didn't you ask the doc for some strong painkillers?
How long will the tests take to come back?
I have been taking painkillers but they aren't helping. About a week, I have an appointment with the doctor again a week today to discuss the findings but she seemed fairly convinced it's probably lupus
MRS STRESS ED
20-02-14, 18:10
Without sounding rude go back and look at your posts ,you have had MS ,brain tumor just to name a few does this not tell you the problem might be your anxiety ,im not having ago at you I was exactly the same ,but I now no its anxiety
nomorepanic
20-02-14, 18:12
What painkillers?
Mrsstressed- I think that's a bit harsh, if you've read this post and looked at the photos and the fact a doctor suspects lupus and I'm currently bedbound in crippling pain I think you should maybe have a bit more consideration. some of my symptoms are anxiety yes, twitching, eye twitches, tingling etc but a malar rash and joint pain, fatigue and muscle aches that a doctor thinks could well be lupus does not sound like anxiety. Codeine is the painkiller I'm taking
MRS STRESS ED
20-02-14, 18:26
Without sounding rude go back and look at your posts ,you have had MS ,brain tumor just to name a few does this not tell you the problem might be your anxiety ,im not having ago at you I was exactly the same ,but I now no its anxiety
Please tell me why you think this is harsh as I said I not having ago at you ,why would you take offence and yeah I seen the pics looks like acne
A doctor has said it looks like lupus and it isn't acne, they aren't spots they're flat patches of skin. On this site we're encouraged to listen to doctors and what they tell us, not everything can be put down to stress and anxiety, it doesn't cause a facial rash and it doesn't cause crippling joint pain. I don't get acne I never have even when I was a teen
nomorepanic
20-02-14, 18:30
You need stronger painkillers if you are really in this much pain to be honest.
I was on oramorph when I had the Crohn's flareup and tramadol
If the pain is so bad then ask for some stronger painkillers or to see a pain management specialist.
No one is saying you do or don't have lupus but there is nothing we can do until you find out and if you have it then we can support you if you need it but for now there is not much we can say until the tests come back.
MRS STRESS ED
20-02-14, 18:31
I hope it all goes well for you anyway and I really sorry if I upset you im not here to do that im have issues myself
Dave, I hope all is well. I will say two things: Why listen to this one doctor when you haven't listened to 16 other physicians?
Secondly, it's astounding to me the number of comments on a post where someone is not willing to accept anxiety as a source of their problems, and there are so few comments on true success stories.
That says a great deal about people's commitments to recover, in my opinion. I hope I haven't offended anyone, but felt this needed to be said.
Because this doctor took the time to inspect the rash rather than palm me away as soon as they see a history of stress/anxiety. Doctors aren't always right, they make mistakes too you know, if id gone on with this thinking it was all anxiety I wouldn't have got the tests I'm having now and my condition could have worsened beyond all hope. You seem to find it impossible that an anxiety sufferer can have a real condition alongside their anxiety
MRS STRESS ED
20-02-14, 18:43
Dave, I hope all is well. I will say two things: Why listen to this one doctor when you haven't listened to 16 other physicians?
Secondly, it's astounding to me the number of comments on a post where someone is not willing to accept anxiety as a source of their problems, and there are so few comments on true success stories.
That says a great deal about people's commitments to recover, in my opinion. I hope I haven't offended anyone, but felt this needed to be said.
Tanner that is well said I totally agree x
My husband was also tested for Lupus since he had/has a similar rash on his cheeks over his nose like the wings of a butterfly.
That was two years ago, the rash is still there. It turned out it is psychosomatic.
Let us know what your results indicated.
Dave, that is all or nothing thinking. That your condition could have worsened beyone all repair. I hope you don't have lupus but many people lead totally normal lives with lupus. Very few people live normal lives without tackling their anxiety, which is also a very real illness. I guess my question is what are you doing to help your anxiety condition today? I see an enormous amount of time spent worrying about physical symptoms and self diagnosing. That time could be used better spent on your recovery process. All of my best wishes.
I am currently awaiting my 4th CBT session tonight and I'm taking trazadone 100mg but it's not helping my physical problems and pains
Can you use some of what you have learned in the first 3 CBT courses to try and alleviate some of your anxious and irrational thoughts, while waiting on test results. Might help.
When a test that changes the whole course of my life is looming I can't find why way to relax. I just want this hell to end
nomorepanic
20-02-14, 21:25
You need to keep calm and not stress over it as that will make things even worse.
What will be will be and if the test is positive then you will deal with that as well.
Life changing illnesses can be dealt with - I know that only too well.
Dave if you do have lupus, and I hope that you don't, it's only going to change the course of your life if you allow it to. Lupus is not a death sentence, it's an illness with plenty of options for different treatment plans. It's your reaction to what happens that is important here.
So many of us here do suffer with other illnesses along with anxiety, but it's not an excuse to allow ourselves to give in to the anxiety or not work on it at all. Your mental health still needs to be worked on consistently, if you don't it will be to the detriment of your physical health - especially if it turns out that you do have lupus, as stress is considered a major trigger for this disease.
You have a doctor who is paying attention to your fears, so work with him and help yourself along with the treatment he decides for you. All of this high anxiety and rumination will only make things worse for you. It's normal to worry when you're feeling sick, especially if faced with a chronic disease, but it's vitally important to learn to control the irrational part of your worrying that is getting you all worked up.
I do have it ive read about the process so many people went through before diagnosis and mine fits to a tee. Im so frightened, i fear its affected my brain, i cant think at all my head is constantly blank even when i try and think. I keep experiencing cold rain drop feelings on my skin and wet patches that arent wet when i feel them
nomorepanic
21-02-14, 00:03
You do not have a diagnosis yet
You are also winding yourself up and that is causing anxiety and making the symptoms much much worse
I bet you are also googling and finding symptoms of lupus and now experiencing them
no I haven't, I've had these symptoms for a long time before I even suspected lupus. I'm educating myself as it seems likely this is what I have and I need to learn more about the disease
nomorepanic
21-02-14, 00:34
But there is no point until you are sure you have it cos in the meantime I guarantee you that you will start developing symptoms of Lupus and winding yourself up
Dave, how long have you been taking codeine regularly?
I'm in agony I can't move from
My bed and my muscles are aching plus joints feel like there exploding, these aren't symptoms I'm getting from reading about lupus, trust me.
I've taken codeine for 2 days since the pains began
You mean you've only had joint pain for the last two days? Sorry if I've misunderstood.. just trying to figure something out.. codeine can cause skin rashes - it affects your histamine reaction.
No this has gone on for a long time. I'm considering my own life if I get a lupus diagnosis, I don't want to live with the pain and debilitating ilness
Ok, I completely understand that desperate feeling... it's awful thinking you may have something serious - but right now you really don't know that you have. There could be many other reasons why you've got these symptoms, so just hang on in there until someone gives you a definite diagnosis.
I've been on all sides of this dilemma - personally I knew I was ill many years ago but doctors didn't believe me. Eventually I was diagnosed with Crohn's.
In later years I believed I had a brain tumour - it was anxiety.
So you can see, things aren't always what we think they are. If I were you, I'd try and come off the codeine, take brufen instead (you can take 600mg at a time), plus paracetamol, try an antihistamine & see if the rash calms at all.... obviously I'm not a doctor and you might want to ring your GP to check you're ok to do this - but this is what I'd do. And stop googling!
It's the fact doctors have said it's probably lupus and I have a very distinctive symptom (the rash and terrible joint pain) it's in curable and will destroy me internally and ruin my life. I have a decision to make and I don't think I want to continue
TooMuchToLiveFor
21-02-14, 01:25
Did your doctor use the exact words "probably" lupus?
Yes
---------- Post added at 01:27 ---------- Previous post was at 01:26 ----------
My life and future has crashed around me
Dave, you are blowing this WAY out of proportion. Lupus is not a life ending diseases nor does it have to be life altering. You are altering your own life right this moment with all of the constant negativity. I truly do hope that you do not have lupus, BUT I know that you have health anxiety. You are making yourself sick.
Talking about making a decision not to live with lupus BEFORE you even have a diagnosis is just irrational thinking. Get a grip. Get out of that bed and do something positive for yourself. Add some positive value to this board. There are people here that care and that are trying to help you but you will have none of it.
Quit feeling so darn sorry for yourself. There are people fighting for their life at this very moment. It is irritating at the very least to see someone so set on being So ill prior to a diagnosis.
When are you going to have test results back? Until then, try to do something to make somebody smile. Perhaps you will feel better.
It's the fact doctors have said it's probably lupus
Dave, you've reported several different phraseologies as if they were verbatim here, and I think your memory is being made unreliable by your anxiety. The "might be lupus" that you earlier reported as what the doctor said is much more likely a thing for a doctor who's done no testing to say; it would be very unusual for doctors to say it "probably" is lupus without seeing ANA results.
And the symptoms you've been reporting prior to a couple of days ago aren't lupus symptoms, so even if you have lupus it hasn't been blighting your life, and you'd have treatment that would make it impact you even less than it has. Even if it is lupus, it's still your anxiety that's driving this bus. Don't you want to think about another way to live?
TooMuchToLiveFor
21-02-14, 01:40
I second that motion, Tanner!!!!!
My mom has been battling advanced breast cancer….and in six months she hasn't whined this much……actually, she hasn't whined at all- even though she's had a breast, two ribs, and part of her chest wall removed!
I know I may be coming off as insensitive, but there has been enough energy poured into this thread until there is either- 1.) a diagnosis or 2.) some willingness to focus on issues that can be worked on now- anxiety.
Also, my doctors diagnosed me with "probably" a pheocryocytoma (tumor on the adrenals), "probably" thyroid disease, and "probably" cortisol disorder…..until it all came back clear and I got the final diagnosis…..ANXIETY.
Since you don't think you are dealing with anxiety, and you are SURE you have lupus…..-- then why are you here instead of on a lupus board?
I can't get out of bed and I can't stop this excruciating pain.
---------- Post added at 01:42 ---------- Previous post was at 01:40 ----------
I will leave the site and join a lupus board, thank you for the support in previous threads and over the last few months
TooMuchToLiveFor
21-02-14, 01:43
You feel like your muscles are always tight or strained, sometimes to the point of frequent pain, or even persistent and ongoing pain. Some may also find the pain so restricting and debilitating that it prevents physical activity, and sometimes to the point of becoming bed ridden. It's also common to experience pain or cramps in any of the body's muscles.
Taken from anxiety symptoms……..
Thanks Too Much! Way too much energy put into this thread. My Dad, within 60 days, has been diagnosed with a malignant spinal chordoma, colon cancer, and now mantle cell lymphoma. He hasn't carried on this much. And he is fighting.
I don't mean to be insensitive but I guess I'm tired of the constant attention that whining seems to garner. Get up and work on your anxiety. Deal with a diagnosis when it's an actual diagnosis.
I'm sorry to hear about your dad that's terrible. I'm struggling to come to terms with what the doctor has said and the way my body is feeling now. It's a cry for help as I don't have much support or many people to talk to and this has got me on the edge. I can't physically get up my joints feel like they're exploding. I will join a lupus forum amd stop
Posting on NMP. Thank you everyone for the kind support throughout my ilness and for taking the time to support and encourage me when things have been tough x
Dave, I don't think you should leave here - people know you now, and whether or not you have a physical diagnosis looming, you are suffering from anxiety to some degree or other.
No-one's saying you should leave, people are just wanting you to try and find some inner strength & positivity - for your own sake! Whatever we have to face, attitude does make a difference.
---------- Post added at 01:56 ---------- Previous post was at 01:55 ----------
Thanks Too Much! Way too much energy put into this thread. My Dad, within 60 days, has been diagnosed with a malignant spinal chordoma, colon cancer, and now mantle cell lymphoma. He hasn't carried on this much. And he is fighting.
I don't mean to be insensitive but I guess I'm tired of the constant attention that whining seems to garner. Get up and work on your anxiety. Deal with a diagnosis when it's an actual diagnosis.
So sorry to hear this :(
Dave,
I've read through this long thread and have found one thing that's been consistent and that's the inconsistency concerning what doctors are saying what. One asked questions that you equate to being associated with looking for lupus and then another saying it probably was lupus. One was a male, the other a female etc. What were the results of all the work-ups and what did the GP actually say today?
Regardless, It's truly sad you're feeling this way. I hope, whatever it is, it's not serious and you get to the bottom of it and find a way to treat it.
Positive thoughts
The blood tests haven't come back the doctor just suspected lupus and said that she wanted some blood tests to confirm the diagnosis essentially. She said that if they come back positive I'll be referred to a rheumatologist. I'm I'm real agony at the minute and my memory is awful. Whatever it is isn't good
Dave, keep us posted on your results and what ever it is, you will always find understanding caring people here. Let's see what your results are, an then just go from there.
Dave, I don't know why you're ignoring the posts here about stress and it's effects on your health. And also the ones that tell you lupus is perfectly treatable. There's a lot of good advice in this thread that you're bypassing because you're so focused on this possible diagnosis.
You're creating a doomed future for yourself, with or without lupus.
Be careful, the way that you think and react to the world will have many real physical effects on your body, you can make yourself feel worse or trigger stress related illnesses.
You say that lupus can cause so many other problems and diseases, well so can chronic stress! You'll make yourself sick if you allow yourself to continue on this way. And if you do have lupus you'll make it a lot worse for yourself with stress and a victim mindset.
Take some responsibility for your mental state and your health, it's not out of your control. You should start by learning about how our mental state affects our health and chances of recovery from sickness.
You'll find people on the lupus board saying the exact same things to you, and possibly even have less time for someone who refuses to help themselves.
You have absolutely nothing to lose by beginning to treat the anxiety.
TooMuchToLiveFor
21-02-14, 09:31
Very well said, Honey Love!!
Thanks Honey Love. I'm reading on it and the prognosis in men diagnosed at a young age is particularly bad. I'm beginning to get the impression that this forum isn't the right place for me anymore, I don't think anyone or anything can help me at the minute and it seems I'm just causing anger with my fears and despair. I can't treat the stress when I'm bedbound in agony
You absolutely can treat the stress when you're in that state, people with chronic conditions and chronic pain do it all the time, even when bed bound. It's often part of their treatment.
Read up on mindfulness for chronic pain. Have a look at some online CBT. Read about managing chronic illness and stress management.
Your posts are generating frustration here because you're ignoring sound advice and only want to talk obsessively about your fears and symptoms. People here are trying to help you, to get through to you but it's falling on deaf ears.
You'll find the same on any forum that you act this way on, whether it's for anxiety or lupus.
If you really pay attention to what everyone is saying you'll find kind people who only want the best for you. They recognise that anxiety is at least part of the problem here, and since we know nothing about lupus all we can do is offer advice on dealing with your mental state.
All people are asking of you here is to stop treating your health as a foregone conclusion and look at avenues where you can help yourself out. It's exactly the same thing as this doctor will ask you to do.
I appreciate what you're saying and know it must be frustrating to see my constant posts disregarding advice but I'm just in complete shock and despair. I've made the decision that I don't want to continue with my life, I'm not a coward I've just had enough I haven't been able to get out of bed for almost 2 days and I'm in complete agony despite the painkillers. I don't want to live this life
Dave,
My advice, ring your GP now and make an appointment. Whether you have lupus or not (I'm not a doctor but I think it highly unlikely), your main concern is anxiety and this is what you need to discuss with your GP. Whatever treatment you're on, it's clearly not working.
I know you'll find this hard to accept but anxiety can cause any number of physical symptoms, to the point where you can be in excruciating physical pain. You've got yourself caught in a vicious circle at the minute - the more you lie in bed and think about how you're feeling, the worse it will get. I'm trying to help you so please get up, have a shower and ring your GP. Go out for a walk or do something else distracting in the meantime. You'll think you can't but the only thing stopping you is you.
Honestly, we know how hard it is - we've all been there, that's why we're members of this site. I promise that things will get better.
Pip x
Dave if you're feeling that way I don't think there is much help that we can give you. I'd suggest you talk to your GP or a family member immediately about feeling suicidal.
And like Nic said, talk to then about getting a stronger painkiller to ease the pain, there are many options available to you.
Don't write yourself off just because you've been in bed for two days, especially since you haven't been given any kind of diagnosis yet.
Dave you really need someone to talk to if you're have these dark thoughts, really urge you to call someone. I can relate to those desperate feelings though as I'm sure so can a lot of others on here and you really do have my sympathy. I don't know anything about Lupus (and I don't intend to Google as I have the same symptoms as you including the rashes and I don't need another 'illness' to add to the collection ;) ) but it does seem that others are saying it's not the end of the world and can be managed so I know it's ridiculously hard but try and focus on that. I noticed that your first post was at 12.38am, did you Google by any chance and get yourself in a state? I'm not saying it's not what you think it is it's just when I've read about symptoms and I get shocked and terrified, my whole body contorts with instant pain and stays for days/weeks until I've calmed down. Also when was the last time you slept/ate?
Dave, if you're feeling suicidal, please ring your physician or call a suicide hotline. You're going to be just fine. You just have to believe it.
Today my hand has gone completely numb and I can't physically move. How I wish that This was all anxiety now
---------- Post added at 12:46 ---------- Previous post was at 12:46 ----------
I have talked to some friends and my family and warned them about my state of mind, if I'm diagnosed with lupus I have made my decision. The prognosis for men my age with the disease is dreadful
How are you typing then? :winks: that was a joke! But I just had a run in with a nasty neighbour and opened a property bill that I wasn't expecting and can't afford :ohmy: I thought I was having a stroke! I felt sick, legs shaking, heart hammering, sweating and think I'm going to throw up still! Also whole face has gone completely numb (swaps from hands to face) and it's really scary :weep: Still not saying it's not what you think but your anxiety can't be helping as I feel genuinely dreadful but I was okay before I opened the letter. Have you asked about a sedative just to get you through till test results?
All I can say is, in reviewing your posts from January on, is that every doctor, all blood tests, neurological tests etc. have ruled out anything serious.
"after visiting 5 different doctors, who have carried out basic & neurological tests, all have told me i have an anxiety disorder and nothing serious to worry about."
"i visited the doctor again today for my blood test results, which thankfully all came back okay. Whilst there i took him a list of my symptoms and explained to him in detail my fears and the severity of my symptoms. Whilst there he checked my swollen neck gland which he said was fine and then my ears and throat. he also carried out a thorough test of my eyes/pupils by shining in a light, he said this would check for brain tumours or MS. He said he is 100% certain i am not suffering from any life threatening illness and prescribed me citralopram for anxiety. "
There are more posts in the last month where you've stated the doctors are not concerned. Even this post states "think i've found my problem :(". You've not been diagnosed with lupus.
I can understand 1 doctor not picking up on a serious illness but as you stated "16"? Again, I do hope there's nothing serious going on but from what you've posted over the last month, the fact that you've been diagnosed with anxiety, have started CBT etc., points in that being a correct diagnosis. Maybe it would help to review what all the doctors have been telling you?
Good luck and positive thoughts
nomorepanic
21-02-14, 13:30
I can't believe that you are going to end your life IF and that is a BIG IF you get diagnosed with an illness that can be treated! That is so selfish and I am very angry at the moment.
Have you read the prognosis for young men with lupus? I don't want that lifestyle. No doctors checked out the rash properly and the one that did has said she suspects it's lupus, doctors make mistakes too and act on probability instead of investigating rare cases such as a 21 year old having lupus
venusbluejeans
21-02-14, 14:19
I have been following this thread but haven't relied yet...
but Omg wow, seriously you think life is that throw away that if you are diagnosed with a treatable illness you would end yours??
After losing my Dad suddenly back in 2004, it makes you realise how precious life is......... Me and my family would give ANYTHING for him still to be here with us and I bet he would sooner be here too what ever he had to live with!!
just wow!!
Dave,
Please step back a moment and reread what your saying, I think your blinded by your fear at the moment. If everyone gave up and ended it when things got tough we'd still be in the stone age right now. Your still young, your not faced with a terminal illness. Please I urge you to step back and peel back the veil that's keeping you from drawing something good from this. Like the fact that you don't even know if you have it or not.
People here can honestly do no more for you if you can't help yourself. Life has a way of moulding us into amazing things, don't shy away from it.
Things will get better, you are not the worst off. Remember that :hugs:
nomorepanic
21-02-14, 14:41
http://www.lupus.org/answers/entry/lupus-prognosis-is-there-a-cure
Read that!
My brother-in-law's father has lupus and lives a full and healthy life. He has it managed and is able to live completely normally without issues. Same with my own mother-in-law. She rarely even brings it up!
It just seems that the prognosis is particularly worse in young men. Do you know how old your brother in laws father was when he was diagnosed?
nomorepanic
21-02-14, 15:02
Which site gave you that info?
Personal accounts of men suffering lupus and if you google
'lupus prognosis men' you'll see many lupus based websites reporting the same
Why are you Googling that, Dave?
I want to begin by saying that I wish Dave well and will do anything that I can to help him when he is prepared to accept the help.
With that said, do each of you realize how many new and almost new members that are suffering right now and that are receiving one, two or three replies? There are people that are frightened and want our help - people that are not threatening to end their life if they are diagnosed with a completely manageable illness.
I say let's not continue to post 90 and 100 replies on threads started when the person can't or won't accept help. I know posts like this don't help my anxiety one bit. The drama of it all truly makes my own anxiety flare up.
I don't want Dave to be hurt nor do I wish him to be anything but well. I just think that we give this sort of post way too much attention.
Lupus is not completely manageable in 21 year old men!!
Neither is anxiety obviously. Come on Dave! This is beyond ridiculous. So you are 21 years old and want to kill yourself over some diagnosis that you may or may not have.
Tanner, I think you are right, we're not really helping here. I feel this may be like Willous where Dave needs more help than we can offer him across the Internet.
Dave I'd still urge you to speak to your GP. I wish you well and hope that everyone's words will sink into your thoughts eventually.
I hope that you will realise doctors aren't always correct and yes I do need help with my anxiety but I'm completely immobilised with this and I have nowhere to turn
Lupus is not completely manageable in 21 year old men!!
Sure it can be, Dave. You're letting your anxiety make stuff up now.
And you still haven't been diagnosed with lupus. It'd be bad enough to be the guy who killed himself over having a manageable disease, but I'd hate to be remembered as the person who killed myself over a disease I didn't have.
Believe me it's not, if you could be in the pain I'm
In now you'd understand why I'm thinking that way. My parents can't stop crying they've never seen me this ill, I don't want to just deteriorate like this in front of them
Does your doctor know you're in this much pain?
Dave,
I really feel for you - I know how hard it is but I'm going repeat my advice and then leave you to decide how you deal with your situation. I agree with the previous member, this isn't helping you and if you can't even try to listen to what everyone is unanimously saying, there's nothing we can do to help.
My advice:
Get up
Ring your GP for an appointment, explaining how you feel (mentally)
Have a shower
Go out of the house for a while
As I said, you will start to feel better. Take it from someone who's learnt this from bitter experience and many wasted years.
Take care
Pip
Wow! Dave, listen to these wonderful caring people. They have great advice for you. Try some of their suggestions, at least out of respect for them for trying to help you. Let's do it one at a time. Get up and walk around your house, take a shower. See how that goes..... Take a step to the outside, take a deep breath of fresh air. Try to get at least one good positive thought in your mind. Let us know how that goes, ok?
Looked at your pictures Dave and that rash looks just like mine that developed from taking beta blockers (along with other side effects that you describe) so I stopped taking them and it went. Don't know if you're taking any meds but rash does seem to be quite a common one with a lot of those types of medications. Also eczema outbreak before xmas over body that looked the same and was an allergy to bubble bath! Just saying that 2+2 doesn't always equal 4 (I'm such a hypocrite!lol :blush:) Anyway try the great advice above if you can, hot water might just ease the pain a little
MRS STRESS ED
21-02-14, 17:54
I appreciate what you're saying and know it must be frustrating to see my constant posts disregarding advice but I'm just in complete shock and despair. I've made the decision that I don't want to continue with my life, I'm not a coward I've just had enough I haven't been able to get out of bed for almost 2 days and I'm in complete agony despite the painkillers. I don't want to live this life
Im so upset reading this my brother in law died of cancer he was in servere pain every day ,but never once did he give up he fought to be with his family ,so for gods sake start fighting your illness
some of the photos are of just one side but in general it only affects my cheeks and nose and it would explain a lot of the joint pains i experience which seem to come when the rash is at its worse (flaring) right now the rash isn't too bad but is still visible http://s15.postimg.org/5ggz5mubf/image.jpg i'm very nervous about going to the doctors on Thursday and hearing what these blood tests have shown. if the tests haven't been done it's just going to be more uncertainty to go through as well whilst i await answers
I think the doctor is covering her arse by ordering tests that she knows are 99% likely to be clear.
Based on those photos if you have Lupus then half the world must do to....! Your face looks normal. I get more flushing across the cheeks, nose and forehand than that and I don't have lupus.
---------- Post added at 19:48 ---------- Previous post was at 19:44 ----------
You need stronger painkillers if you are really in this much pain to be honest.
I was on oramorph when I had the Crohn's flareup and tramadol
If the pain is so bad then ask for some stronger painkillers or to see a pain management specialist.
I completely agree with this as well. Even if the doctor thinks your pain is psychological in origin they should still treat it aggressively. There are many options for pain management and they should be explored with your GP.
Being in pain makes anxiety worse, having anxiety makes pain worse......it is a vicious negative circle.
I appreciate the support but the doctor suspects lupus and thinks the results will prove conclusive of this. I can just wait for a diagnosis but my severe joint pain and muscle aches/fatigue do back up the doctors opinions. I got showered and had a short walk out but felt very fatigued. Adjusting to life is going to be difficult. My dog cheers me up
We'll done Dave, one step in the right direction. Keep it going. You can do this!
nomorepanic
21-02-14, 22:56
Why did you post on another forum saying you don't want to die yet post on here telling everyone you are going to kill yourself?
I don't want to die but I don't want to live with lupus if it's as bad as I'm feeling now.
nomorepanic
21-02-14, 23:47
I suggested seeing the doc about pain relief - have you done that?
Hi Dave,
Everyone here has given you some great support and advice throughout this thread. I'm probably only going to reiterate what they've said previously, but please consider my response seriously.
Not only am I currently in my 5th year of study to become a clinical psychologist, but I have also previously suffered from debilitating anxiety and panic disorder, so I am speaking from both the perspective of a sufferer and someone educated in mental health.
From what I've gathered, you haven't had any medical conditions diagnosed, and it sounds to me like they've tested nfor absolutely everything. If you were suffering from any serious medical condition there would have been indicators in the many tests you've already had. There haven't been any, therefore a serious medical condition is out of the question.
However, you are presenting with serious symptoms of anxiety and stress. You may not be aware, but anxiety is a mental condition that CAN and DOES have PHYSICAL side effects. Anxiety causes an increase in your adrenaline levels - due to this, your body is always on something we call 'high alert'. This means your body is always prepared to defend itself because it thinks something is wrong or something bad is going to happen. This means that not only is your body constantly using A LOT of energy, but it is also CONSTANTLY tense. This can cause EXTREME muscle and joint pain, as well as severe tension headaches. Furthermore, due to all of the energy your body is using on anxiety, the body often becomes very fatigued and generally run down. These side effects of anxiety can leave people bed-ridden for days, weeks or even months if left unmanaged, simply because your body is exhausted and worn out, not because you are suffering from an illness or disease.
I would recommend asking your GP is it would be possible for a referral to see a psychologist or a psychiatrist. Both are trained to be able to differentiate between medical symptoms and anxiety symptoms, and both can help provide a treatment plan that includes support, symptom management and recovery.
This is not an easy time for you, and no one is downplaying that. We all know how debilitating this can be, how painful it is and how exhausting it is to never know what is going on or why. Rest assured that your symptoms definitely sound like classic anxiety symptoms, and the best way to get rid of them is to see someone regarding treatment and support for anxiety.
Cheers,
A
nomorepanic
22-02-14, 00:48
Good Post - I hope it isn't ignored!
Serenity1990
22-02-14, 01:05
I don't want to die but I don't want to live with lupus if it's as bad as I'm feeling now.
Hi Dave,
You're clearly (understandably) very anxious right now, I think you're actually doing really well. But it's likely the case that the anxiety of what you're going through is hugely exacerbating the symptoms, so try not to judge things on what you're feeling right now.
Also if and when you do get a diagnosis, that's when the doctors can start treating your symptoms, so for this reason too you're at the beginning of a road to feeling miles better.
I know little about Lupus, other than that Lady Gaga, Gina Yashere and Seal all have it and seem to de doing rather well. In fact Yashere claims to have eliminated her symptoms entirely by adopting a particular diet.
I hope you're wrong and that you're given the all clear. But if that doesn't happen, the diagnosis isn't a death sentence and if you see it as the doorway to the right treatment to feel better, maybe your anxiety will settle down too.
I appreciate the support but the doctor suspects lupus and thinks the results will prove conclusive of this. I can just wait for a diagnosis but my severe joint pain and muscle aches/fatigue do back up the doctors opinions. I got showered and had a short walk out but felt very fatigued. Adjusting to life is going to be difficult. My dog cheers me up
Lupus is quite rare. Aches, pains and fatigue are really common.
You state elsewhere that you already had negative tests before. The chances of these tests being positive are very slim.
On top of that Lupus isn't a death sentence.
I went to the ER last night as my speech became very slurred and my joints were in agony, the doctor again said my rash and joint pain sounded a lot like lupus and gave me some painkillers and sent me on my way. I'm exhausted after walking the length of my room and I'm bedbound, I appreciate this is an anxiety forum but you need to accept the probability this is lupus, 3 doctors have said it now.
People seem to be ignoring the fact that I don't only have sever joint pain and fatigue I also have a very distinctive malar rash across my nose and cheeks! I'll upload another picture as the ones earlier didn't show it very well
With all due respect, I didn't say that it was definitely not Lupus. What I did say is that none of your tests have come back positive for anything and that your symptoms could definitely just be cause by severe anxiety. Anxiety mimics the symptoms of countless different illnesses and diseases, unfortunatey this causes more undue worry for sufferers.
I didn't mean to omit your rash when explaining symptoms, sometimes there is a lot in posts which makes it difficult to keep track. But, anxiety can also cause a similar rash. It isn't exactly caused by anxiety, but by body stress due to anxiety. Stress causes chemical responses in the body, and these interactions can result in skin irritation, discolouration and rashes.
3 doctors have not diagnosed you, they have suggested that it may be Lupus. However, until tests come back positive and you have a definitive diagnosis, you cannot throw it all up in the air and say 'Oh my goodness, I have Lupus, this is hopeless'. Remember, symptoms of Lupus are also very manageable and treatable, and most people live normal lives.
My suggestion to see a psychologist or psychiatrist doesn't make a difference no matter whether your symptoms are from anxiety, or Lupus. Your symptoms are obiously causing you stress and worry, and seeing a mental health professional can help provide support and advice until you do have a solid confirmation of whether or not you have Lupus. Contrary to popular belief, psychologists are not just for treating mental illness, but also for providing support and counselling throughout suffering of other illnesses or stressful life events.
nomorepanic
22-02-14, 12:47
Why couldn't they do the blood test last night or chase up the one you had and get the results then you would know.
They can fast-track results if necessary and I would have thought this would have been done in your case.
I rang my GP and they said the ANA takes at least 5 days cos it's sent to a lab, this is the test they need to establish whether it's definitely lupus
I thought you already had that test done and it was negative?
I had an ANCA test, this doesn't test for lupus
---------- Post added at 13:26 ---------- Previous post was at 13:24 ----------
I get the impression on this post that people are trying to subtly hint I'm making things up or changing my story. It's really not very pleasant. I would never ever do that, I had an ANCA tests when in hospital and this came back clear, this is not a good test for lupus and only shows up in 20% of lupus patients. Since the test to visited my GP and she ordered an ANA test, a kidney function test and another blood test I can't recall, i have an appointment on Thursday to discuss the findings and the GP told me the results will be back around then.
I don't think anyone's trying to subtly hint at anything, the posters have been pretty straight up on their opinions. I think you're just unhappy about the fact that people aren't necessarily telling you the things you want to hear.
Looking from the outside in, it seems that we're looking at an anxious person who's collapsed under a diagnosis they've not yet received - and a diagnosis they don't need to collapse under if they do receive it, as you don't know what your personal prognosis will be. Someone who's calling themselves bed bound, even though they've only been in bed for two days and still have been able to get up and about.
No one is denying your symptoms or real, nor that you're not facing a possibly difficult diagnosis. Everyone's just trying to point out that it's your reaction here that's making this far worse than it needs to be. You're cycling in a victim mindset, and it's upsetting and confusing to the people who are trying to help.
I will still urge you to speak to your GP immediately about your anxiety and state of mind, whether you have lupus or not it needs to be addressed.
nomorepanic
22-02-14, 13:48
I rang my GP and they said the ANA takes at least 5 days cos it's sent to a lab, this is the test they need to establish whether it's definitely lupus
Ok that explains it thanks
MRS STRESS ED
22-02-14, 15:12
Without being acused of being harsh again ,when are you going to listen to anyone here who has took time to reply to you ,your not listening to anyone only yourself ,unfortunatley for you until you accept your real problem you will always have MS BT LUPUS and I know you will take this the wrong way again but personaly thats your problem good luck you need it
Hi Dave
People on here, really don't think you are making it up. I believe that you are feeling all these symptoms. What people are trying to say is that the symptoms are are being made worse by your anxiety, which is sky high. Believe me when I say, I've been there. Feeling too weak to get out of bed, and it was anxiety, which is just as debilitating. I've also had serious illnesses, where because I knew what was wrong with me, I could cope with the pain.
Whether or not you have Lupus is immaterial. Instead of looking up symptoms for Lupus, why not have a look at some Mindfullness websites such as http://bemindful.co.uk/. People use mindfullness for pain in the body and pain of the mind. It has developed from Buddhist teachings, but is now started to be recognised by NICE as treatment for chronic pain and for anxiety and depression.
Go on give it a try, it may take your mind off things for a little while.
Please let us know how you get on.
Be kind to yourself Dave.
---------- Post added at 15:23 ---------- Previous post was at 15:19 ----------
Also have a look at this http://goalistics.com/2011/09/coping-pain-meditation-help/. John Kabat-Zin is one of the founders of modern mindfulness.
I think it's important for us all to remember that Dave is in a lot of distress and is highly anxious, lupus or no lupus. Most of us can relate to this and understand how difficult it can be to stay rational and take advice.
Dave - try to stay as active as you can and remember that everyone here is trying to help you. That's why so many people are replying to your posts. Take care.
Pip
Thanks for the advice this is a really difficult time for me and my family and my mental health is at an all time low, I will return with my test results when I get them. Thanks to those who have supported me and helped offer advice on my anxiety
Mrsstressed- anxiety is a problem yes but it's understandable to be anxious when you're suffering from a physical illness and you can't get a diagnosis. Doctors didn't suspect lupus as it's rare in men but as my symptoms have developed it has painted a picture
Please let us know as soon as you get the results ok?
I am not going to say you just have anxiety, you very well may have lupus. I hope you don't but until you get your results I am not going to put it all down to anxiety.
Get these results out of the way first. If it isn't lupus then you need to work harder on your anxiety. If it is lupus you need to find a way to deal with it with the help of professionals and loved ones.
Much love and strength going out to you.
MRS STRESS ED
22-02-14, 21:40
Thanks for the advice this is a really difficult time for me and my family and my mental health is at an all time low, I will return with my test results when I get them. Thanks to those who have supported me and helped offer advice on my anxiety
Mrsstressed- anxiety is a problem yes but it's understandable to be anxious when you're suffering from a physical illness and you can't get a diagnosis. Doctors didn't suspect lupus as it's rare in men but as my symptoms have developed it has painted a picture
MrDave I truly feel for your situation,im not saying its just anxiety but it does need adressing,please just get your results of the tests hopefully you have not got lupus it justs upsets me to hear about you wanting to take your life ,life is a presious gift please focus on getting better and live ,wishing you well
If it's lupus it's incurable I will visit a specialist and assess my options going forward. As an anxiety sufferer being diagnosed with an illness which is unpredictable and can attack any organ in your body at any given point is your worst nightmare and I would find it very difficult to cope, I think we can all relate to that
Hypo- thank you for the kind wishes I'll be sure to let everyone know the results. It's really hard at the minute and the pain and fatigue is difficult to deal with. I feel sorry for my parents as this is really affecting them as they seem to know a bit more about lupus and what it does
MRS STRESS ED
22-02-14, 22:03
If it's lupus it's incurable I will visit a specialist and assess my options going forward. As an anxiety sufferer being diagnosed with an illness which is unpredictable and can attack any organ in your body at any given point is your worst nightmare and I would find it very difficult to cope, I think we can all relate to that
Hypo- thank you for the kind wishes I'll be sure to let everyone know the results. It's really hard at the minute and the pain and fatigue is difficult to deal with. I feel sorry for my parents as this is really affecting them as they seem to know a bit more about lupus and what it does
MrDave I can relate to what you mean and as a parent myself ,I know how hard it is if your children are ill lets hope your okay best wishes
Hi,
Sorry I'm not to educated on lupus in the slightest.....
But....r
Your rash to me doesn't resemble a lupus rash, it looks more Like excema and maybe roscea to me, I suffer from a similar rash when my excema flares up.
X
nomorepanic
22-02-14, 22:13
I live with Crohn's disease and that is incurable and I also have heart failure but you cope and adapt.
There was a time when I was convinced I had lupus too ... I had joint pain, muscle pain, and a rash. It got so bad in a reaction to a virus I had that I truly could not move and was in the emergency room twice. I had the blood tests you had and I don't have it, but I understand your fear as I was there myself at one time. I was terrified. I felt bad for my husband who had to put up with my fears too.
I hope for the best results for you. Regardless of what happens, you will eventually find a way to cope and live. We always do :hugs:
Dexterjames
24-02-14, 15:42
I get a rash that looks the same comes and goes seems to be more prominent when i am in panic mode.Or if i have had a hot bath can last for a Day go down then balloons up again.
Hope all gos well.
If it's lupus it's incurable I will visit a specialist and assess my options going forward. As an anxiety sufferer being diagnosed with an illness which is unpredictable and can attack any organ in your body at any given point is your worst nightmare and I would find it very difficult to cope, I think we can all relate to that
Hypo- thank you for the kind wishes I'll be sure to let everyone know the results. It's really hard at the minute and the pain and fatigue is difficult to deal with. I feel sorry for my parents as this is really affecting them as they seem to know a bit more about lupus and what it does
It has been a few days since you posted now.
How are things, did you get your results back yet?
TooMuchToLiveFor
26-02-14, 17:07
I have been thinking of you too…..let us know how you are doing….I believe your doctor appt is tomorrow?
AuntieMoosie
28-02-14, 01:44
Hello Dave :)
Well what a pickle you've got yourself into!
As has been mentioned on this thread, I can't remember by who, but, yes 100% you are catastrophising, you are also hysterical, put these 2 combinations together and your rational thinking will go right down the pan!!!
No one on this thread is saying that you haven't or you have got lupus..........in fact, even your doctor hasn't said either way yet.........so why all the planning??
Doctors will often say things like "it could be this, that or the other" mostly I think it's just them chewing over possibilities, BUT and, yes, it's a big BUT!........just because they've mentioned it, does NOT mean to say that you have got it!!
The symptoms you describe can be symptoms of absolutely loads of stuff, most of which are in no way serious, your symptoms are very, very common in lots of different things.
You seem to have got yourself hooked on "lupus" to the point that you are now living and breathing it!
Yes, of course, I believe that you feel really unwell, the symptoms are real, but you seem to have already diagnosed yourself, and are now busily scaring the sh*t out of yourself!
My advice to you is to see your GP and listen to every word they say.........not what YOU believe, but what they actually say.
Lupus is not the end of the World, I don't know why you seem to believe that it is..........reading stories of other peoples experiences with illnesses is also not a good thing, for 2 reasons. 1) People tend to exaggerate at times and 2) their experience is THEIR experience, you are not them and they are not you!!
There is just one thing that I'm going to say that you may not like but that I feel needs to be said.
There is no need to announce that you are planning on suicide.....
1) I really don't think you are.
2) If we need attention, we only have to ask, there's no need to become dramatic and you will find that people will soon loose patients with you if you insist on dramatising everything, we all have the ability to speak to others, to share out emotions without the need for hysterics.
3) Please stop and think of the affect that your words can have on other people, it's not all about you, we have to consider other peoples feeling too, and a few people have been upset and offended by what you said, I know that you wouldn't have meant it in a bad way, but that's why it's best to just sometimes take a deep breath and think before we speak.
To think that you even mentioned taking your own life is just totally irrational at this stage.
There are many, many people out there Dave, who live with the most appalling illnesses, I know a lady who is in a wheelchair permanently, she cannot use her arms or legs at all, they are just like lead weights, she cannot feed herself, wash herself, go to the toilet herself, put herself to bed, get up, dressed, brush her hair or anything, she is totally dependent on her family and carers day in, day out, but do you know what??.........she is always smiling, she loves life even though she is so disabled.
Yes, life changing illnesses happen, they happen daily, but as has been said, people some how learn to deal with it and live with it, as do their loved ones too.
Please don't talk about your life like it's an old carrier bag that can be trashed like that. Life is worth more than anything in the World and our loved ones are worth more than anything in the World.
Honestly Dave, this is a blip that you have turned into a big bad monster, reading stuff on Google is absolutely no good whatsoever, why study an illness that you haven't even been told that you've got, what's to be gained??.......nothing!!.........oh.......but, hang on.......there is something.................FEAR!!!!! and what does fear do??........it feeds anxiety and panic.......then you end up going round and round and round!! lol
Dave you can turn this into a positive thing now :)
If you get told that you haven't got lupus, that's brilliant isn't it?
You can then focus all of your energy on helping your anxiety with your CBT, that I know you're already doing :yesyes:
If you get told that you have got lupus, then it's just a few lifestyle changes and management, it's not going to kill you :)
You are so young and have so much life ahead of you Dave, grab it with both hands and go live it and live it well..............life goes by in a flash make sure that you get everything that you can out of it.
Best wishes and good luck Dave :)
Dave, AuntieMoosie, has sent you the best sensible post to your thread.xx
For anyone who hasn't seen Dave's most recent post, I've copy/pasted it below. I know a lot of you have shown some great support for him, and have offered great advice, and would be interested in his progress.
"Post: An Apology
I am so sorry for my last post relating to my lupus worries. I have had a terrible rash and a lot of joint pain but today I got my blood results (ANA, ESR, FBC) back and they were all negative. This effectively rules out a lupus diagnosis as they would be off if something was wrong. They're still testing and trying to get to the bottom of things but they believe that post traumatic stress from my assault may have triggered things. I still feel unwell and feel terrible for the state of mind I was in when I last posted.
I'd like to apologise to everyone on the forum for my childish and pathetic behaviour ignoring all the good advice that was offered to me. Everyone has been fantastic to me on here and I feel like a fool. Once again I apologise and your ongoing support means an awful lot to me. "
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