[scattytracy]

Hi everyone I wonder if anyone can give me any advice.
I apologize in advance as its going to be a long one! First of all I'm Tracy and I'm 37 years of age and I have 4 kids the youngest being 2.
My problems started a few days after having my youngest, I had a c section with her and a few days later felt very unwell, had a horrendous temp a rash down both arms and this horrendous pain in my side I couldn't breath. the midwife phoned an ambulance and I was rushed to hospital. the next few days involved lots of morphine steroids and iv antibiotics I had pneumonia. but also they found something wrong with my heart. After much investigations it was a hole which they fixed with a device a couple of months later. Since then I have had the most horrendous pain down both arms and they are still very red as is one of my breasts. My gp keeps taking bloods and saying they are fine, and then referring me for physio who can't find anything wrong with my joints. This has gone on and on. Along with other things, weight gain periods stopped dizzy etc etc. In the end a different dr mentioned lupus, and sent me for different blood tests. I have just found out I had an ANA that was positive and a ENA (I think they are the correct names).
I have been referred to a rheumatologist anyway and have an appointment for end of this month. The last few days have been awful I feel so ill, the pain is at an unbearable peak. I'm so tired feel strange can't think straight my eyes hurt. I went back the drs on Friday and she has put me on 60mg of prednisolone a day for ten days. And I am taking co-codomal and these are just not touching the pain, my right shoulder is the worst its making me feel sick.

Is there anything I can do to make myself feel better, I can't take ibuprofen or anything because I am asthmatic.

thanks for reading and any advice,

lots of love

Tracy
x

 

[Katharine]

Hello Tracy and welcome :welcome:

I'm sorry to hear that you've been feeling so unwell.

The best thing to do to make things better is to get along and see a rheumatologist and you are already doing that Unfortunately you will need patience along the way and it is rare that rheumies diagnose someone at the first visit - they may want to redo bloods and so on before saying what they think.

Do you know if your ANA was high and which ENA tested positive (ENA refers to a group of more specific auto-antibody tests which help pinpoint which auto-immune disease is involved)?

If you do get a lupus diagnosis, your treatment options are pretty good. You may still need to take some steroids short-term but there is every chance that you will be able to come off them after as there are more specific "lupus meds" which will help modify and control your disease meaning that flares of disease activity will become less severe and also less frequent.

Before your visit to the rheumy, try to keep a symptoms diary as this can be very helpful information and means that you don't forget important things. If you get any sudden rashes, take photos of them in case they have disappeared before you see the rheumy.

If you have any other questions, don't hesitate, we can all remember all those questions we had when being investigated

Katharine

 

[greenhaggis]

:wavesmile:Hi Tracy and :welcome: to the site!

You have certainly not had a good time recently! Perhaps the steroids need a few more days to quick in with their effects! If you still have no effective pain releif than you should go back to your GP. I'm sure even with Asthma there will be alternatives that you can use intead of Ibruphen.

I am glad that your Rhuemi visit is not to far off and wish you a successful appointment. In the meantime keep a diary of past and present symptoms and take pictures of any rashes...give details/copies of these to your specialist at your appt.
Good idea to also check out the criteria list on this site and see if any other things are familiar to your symptoms.

Take care and hope to hear more from you soon!

 

[debatat]

Hi Tracey, welcome to the site, you have definitely had a rough time lately. The others have given you excellent advice and I have nothing to add, except I hope that the pred kicks in soon and that the rheumy is able to help you.

Take care

Deb

 

[scattytracy]

hi Katherine, Lesley and Deb

thanks for your replies it means a lot. the dr wrote down on a piece of paper
ANA positive and extractable nuclear antigen (ENA) and that was it so I don't know anymore than that.
i here what your saying about patience along the way, but right now I am in so much pain I can not even lift my daughter into her highchair the bath etc. And finding the whole thing really frustrating....I'm 37 but yet feel like a 90 year old woman!
I do have other things that have gone on that could lean towards lupus, I have had recurrent miscarriages, glandular fever, pleurisy loads of times. my hands and feet swell up to a lot and I get the most awful pmt, and I also get very anxious, and terrible palpitations. I've developed a fear of getting in the car with my husband as I am convinced we are going to crash. So when we go away now I get the train down there lol. Oh and my memory is awful and my head is fuzzy all the time.
My heart surgeon wasn't interested he just said it will be stress or depression and discharged me!
The thing I am surprised about with the pred is I had it last year for my asthma, but they gave me the red one (coated one) and I had an anaphaltic reaction to it. I swelled up like the elephant woman, so I had to stop it. But I did notice then the pain went completely within 2 doses, i've had three doses this time (of the non coated one) and the pain is getting worse!
I will keep a diary that would probably help with the fuzzy head.

thanks again I will keep you posted.
Tracy
xx

 

[Merle]

Hi Tracy

Welcome to the site. Your symptoms certainly seem consistent with an autoimmune disease.

I've got not much to add to what has already been said other than to recommend (pending further help from your rheumy) the very basic approaches of hot baths to help with muscle and joint pain, together with stretching, massage and, if all else fails, a shot of vodka (if compatible with your health issues) can have an amazingly good effect on the pain.

I am also asthmatic and find that I have no difficulty with tolerating and have good pain relief with voltarol (2 x 75mg per day).

Hope you will soon be able to enjoy your new arrival without pain.

Take care.

Merle