[Annie7447]

I have been having probs on and off for years.
ASthmatic all my life, never seriously bad.
CFS 10 years ago
Depression treated for the last7.
My knees, hips, joints in general started to sieze up. To the point I sometimes cant get on a horse anymore. My career by the way! with the freezing and clamping fingers making general yard duties impossible???
In the last four years I am sure they have been flares
2004 asthma getting worse. Pluresy and bronchitis.
2005 athma diagnosed as brittle then butterfly syndrome on my face. Steroids daily and creams and puffas to make a COPD sufferer jealous!
Mouth so sore I struggle to eat at times, really careful about oral hygiene though.
dec2005- dec2006 lost 8 stone 2 lbs first 5-6mths lost 5 stone.
2006 emergency move form home as they thought i was allergic to the wood it was built with.
2007 Asthma not improving CPN worried about my migraines and mental health.

So i guess this is it in short. How do I get my doc to talk about it?
Does anyone else thnk this may be Lupus?
A friend who is an alternative therapist is determined I may have Lupus, I dont want to look it up as I have heard some bad things, I have a young son who with being ill, I have not been the best 'fun' mum and I want to know if this is Lupus will I get my and his life back. Even just a bit?

PLease help my friend gave me this site and said I would find the rigth people here.

 

[raggedyann1]

Hello Annie,

Welcome to the Lupus Site. It sounds like you have a lot on your plate right now. The thing with lupus is that there are no easy answers. Many of the symptoms you list are also found with CFS and Fibromyalgia. Have you been to the doctor about your current symptoms? Have they given you any idea what may be causing the joint pain? I have a lupus overlap combination and Fibromyalgia. As bad as my pain can get it isn't as bad as when the Fibromyalgia wasn't being treated. Some doctors say Fibromyalgia pain can be more debilitating than lupus pain and in my case that is true in some ways.

Never mention to a medical professional that you think you have lupus or any other condition for that matter. That kind of statement puts the doctor on the defensive instead of a partner in finding out what is wrong.
I would ask your doctor what can be done about your joint pain as that sounds like the biggest symptom at the moment. Normally doctors will start running blood tests that hopefully lead to something. The main thing is to get the doctor on your side and to have him/her acknowledge that something is wrong and it needs to be figured out.

Take a look at the Lupus criteria and symptoms posted at the top of the Not Yet Diagnosed forum. There is another post on alternative criteria. See if anything else there rings a bell.

As far as lupus being a scary disease it can be. However most patients these days live a normal life span. Great strides have been made in treating organs like the kidneys, heart and lungs.

Take care,
Karen

 

[Clare.T]

Hello Annie
Sometimes it's easy to say that sounds as if it could very well be lupus. Sometimes I even think that is almost certainly lupus. the 'almost' meaning but for not knowing about bloodwork. Is there much point in ever saying it doesn't sound like lupus? Probably not because the aim is to get the symptoms treated and to find out what's causing them, lupus or not We can never say it isn't lupus because lupus takes so many shapes and forms and there are atypical presentations.

There is no reason why you shouldn't tell your doctor how much the 'arthritic' like symptoms are affecting your life. Tell him that you have decided to make a big effort to get tdiagnosed and treated to improve the quality of your life and your son's. Even without a firm diagnosis there are a number of medicines like the no steroidal anti inflammatories and therapies that might relieve the symptoms, that are also used to relieve such symptoms caused by lupus. Ask for a complete blood count, thyroid & diabetes tests and an ANA.

I'm sorry I don't know what brittle and butterfly syndrome means, but maybe you are referring to a facial rash on the cheeks and down the nose. If so, a dermatologist might be able to help but there are a lot of reasons for this sort of rash, not only lupus. If you are in the sun a lot, protect yourself with a broad rimmed hat and use a sun block, broad spectrum, winter and summer. Steroid creams are very useful short term and used very sparingly, but shouldn't be used long term because they damage the skin.

We can only do our best as parents and very few parents if any think they are as perfect as they would like to be, even if the perceived shortcomings are not health related.
It's important to have realistic aims and to focus on what you can give the child, not on what you can't. Above all never burden the child with your own regrets or apologise as if it was your own fault or start answering questions that they haven't asked. Children are very accepting, although it is harder for them these days to miss out. The children who appear to have the most are often those who are lacking in the really important things. Loved and loving, self esteem, being considerate of other people, unselfish creative, being part of the family effort and so on. It won't hurt them to tidy after themselves, do chores and learn to cook.

Most people with lupus even when it is well controlled and stable have to make adaptations in order to keep well or have accept those already imposed on them, such as not being able to work.
I don't think having lupus is any different in this respect from having any chronic incurable disease, condition or disability, or a disadvantaged status of any sort.

All the best
Clare

 

[Annie7447]

Thank you very much. I now have some slightly better things to ask my doc. The brittle refers to my Asthma, I have no idea when the pain in my chest will come which will then trigger an attack and lately more and more trips to the hopsital. The butterfly is yes the rash across my face I got this is february so not the sun esp where i live as ti isnt strong enough.

To quote my friendly GP when he was struggling it became a bit of a joke until one day he turned round and said " Ok I give up, sod off and worry somebody else with this problem", I would like to point out this was said in no nasty way but he did mean it, I did go off and worry somebody else who eventually put it down to silent chest brittle asthma. (silent chest meaning there is no wheeze) I have had every standard blood test known to man apart from this ANA thing.

Am going to try on Monday to get to the bottom of it all Tahnx again:wink2:

 

[Maia]

Hello and Welcome

There are certainly a number of symptoms of yours that could be indicating lupus (fatigue I'm guessing with the CFS diagnosis, if you have mouth sores causing your pain that's another sign of lupus, the butterfly rash, the joint pain, and the pleurisy). In order to get the CFS diagnosis all those years ago, other things *should* have been ruled out. There should have been an ANA test done at that time... Blood test results change, and some people take years to develop positive bloodwork after getting symptoms.

But with your symptoms becoming more serious, and more numerous, it's definitely in your best interest to ask if something autoimmune could be behind it all. That's the way I would phrase it to your doctor, and then see if the doctor orders the ANA test. If that test is not ordered, then you may need to ask for it specifically. If you get no results on that one, then another way to determine if it could be lupus is with a skin biopsy (we've had a number of people require this step in order to get diagnosed).

You may also want to ask for a referral to a rheumatologist. They are generally speaking the best at diagnosiing autoimmune disease as well as fibromyalagia. Even if the ANA result is negative, it may be worthwhile to inquire about this.

Welcome again (from another horse lover!). I have 4.75 at the moment (foal due April 1st) I used to compete and raise and train horses too as hunter/jumpers. Now I have miniatures and my old TB mare who is pretty much in full retirement!

Take care and good luck at the doctor.

 

[halfpintfl]

Annie, welcome, The best dr. to see about your joints ect. is a Rheumatologist. Rite everything down on a list, the things that are the biggest worry to you. Tell him what meds you are on, and is there anything any better. And, no matter what it is, yes you will be able to have a warm and loving relationship with your son. Let us know what happens, I wish you the best.

 

[Clare.T]

Hello again Annie

I am wondering if the rash could be steroid induced. When my mother used inhalers for bronchitis she used to get very flushed cheeks. I am not sure but maybe very frequent use of inhalers might have some systemic effects. in causing blood vessles to dilate.
Oral Prednisone can certainly induce quite sore inflamed type skin problems.

The other point to make for the record is that it is now thought that some people are sensitive to UVA which comes through at the same intensity winter and summer regardless of cloud cover and intensity.

I hadn't heard of brittle asthma - it sounds a very tricky condition and must be hard to cope with.

All the best
Clare

 

[marymackay]

finding d/x

Hi Annie
good to meet you, and welcome to this wonderful site, where we can look at many d/x, symptoms and treatment.
You have had some great replies to your letter, great advice. Yes, as someone who is in the process of diagnosis, for the last 4 and a half years, and this last year into specialists, near and far, I appreciate how difficult it has been for you to think ahead. Like you I have had many symptoms, and all through my life, but I've had to learn patience, but as others on site have said, we need perseverance, learning about related conditions, but moving on if you don't feel you are being taken seriously.
All the best, and I'm sure the guidance here will bring you through:wink2:

 

[goldensgirl]

Hi Annie

I empathize with your plight. It is a helpless feeling to know you are sick and not have doctors taking you seriously. I have struggled with this for years, and only now am getting some answers.

I agree with the person who said not to tell a doctor what condition you think you may have. I think this does tend to get them defensive and they tend to start thinking more along the lines of anxiety disorders or depression, and stop looking seriously for another condition. Despite the fact that anxious or depressed people can and often do ALSO have other illnesses, this tends to make a lot of doctors take reports of physical symptoms much less seriously. If you do suffer from anxiety or depressive symptoms, I would say to see a psychiatrist to treat these symptoms, you will be better able to fight your battle for proper medical treatment if you are doing ok emotionally. Also, if these are treated and under control, the doctor would have a harder time blaming symptoms on mental/emotional problems. Throughout the course of trying to get proper diagnosis, I was discounted by physicians so often I began to get very anxious about any doctor visit. I never had anxiety other times, but after so many bad appointments, going to a doctor would make my mouth dry and my voice shakey. I was then self-conscious about this and it began to make me even more distressed, making it hard for me to express what I needed to tell the doctor. Although doctors are trained to assess, and should be able to ask the right questions, they often do not take the time, and we get lost in the shuffle.

Some of your symptoms do sound like Lupus (eg, the rash, mouth sores), but as others have said, could be other conditions as well. Lupus can have overlap with other illnesses, so seeing a Rheumatologist is good advice. Stick to telling your doctor about the most distressing symptoms and keep going back, or find a new doctor if that one isn't listening.

Unfortunately, myself and many others don't get taken seriously until things are serious. I hope that you will soon get the treatment that you need.

I wish you the best.

 

[Clare.T]

What does 'CPN' mean ?

Please

Clare

 

[Joandublin]

Hi Clare,

In Ireland CPN means Community Psychiatric Nurse but Im not sure if thats the same as in Scotland?

Cheers
Joan:rose:

 

[Clare.T]

Thanks Joan

I would think that if a person is getting professional pysch help or has a psych evaluation at some point in being diagnosed or after diagnosis that should be enough to indicate for sure that physical symptoms are not associated with psychiatric illness. Lupus can cause illnesses resembling certain psychiatric states and of course depression can be caused by lupus as well as reactive to the effects of illness on life.
Anyway that should only be considered when thorough testing has been done.

Cheers
Clare

 

[Annie7447]

CPN is community psychiatric nurse, they come out to make you feel better and ensure that if it all goes tits up the NHS can't be blamed for neglecting you. I have to say though mine has rung in sick 4 out of the last 7 visits so maybe she should get some bloods done too....lol


Thanks for the advice everyone, my face is all up today so emergency appointment tomorow, none of this waiting for an appointment for it too have faded. I have 6 lesions on my cheek and chin the rash has come over my nose and cheeks, my lips are all ulcers and they tell me this is ok???

Anyway its 2:30 am again so I must away to bed.

Good luck to you all.

Annie and all x