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Discussion Starter #1
Hi all, bit of advice would be greatly appreciated plssssssssss

I am waiting to see a rhemy with regards to getting diagnosed based on the following symptoms;

Carpel Tunel symptoms
Raynaulds Syndrome symptoms
Joint aches/pains/swelling
Photosensitive to sun (MOST DEFINATELY), like a vampire
Sensitive to florecent light (brings on facial rash like malar)
Suffer with mild lymphoedema (have done for a while- no appararent reason)
Dry eyes (tear ducts not working)
Slight breathlessness
Mum also has LUPUS
Pregnancy (2 miscarriages & 1 preterm - I have heard this is common)


My Dr has done several blood tests and says he has hit a brick wall. I have told him my symptoms several times but it was only last week when I listed them altogther and i told him i think i have lupus that he said i think i need to refer you. AT LAST!

The problem is i have been having slight breathlessness (keep taking deep breath and cough to try to ease it IYKWIM). I do not have stabbing pains they are more achey and bruised feeling to them. They are all around my ribs/chest/back/shoulders. The breathlessness is there all the time now but these aches come and go, but alot more ofter now. Chest feels tight like an elephant sitting on me. Sometimes it really hurts to lie down, feels like been hit by a bus.

I do not want to keep moaning at the Dr and sounding like a hypercondriac. Shall i just wait till my rhemy apt in April as I do not have fever and am not bed ridden so cant be that bad can it? And its not stabbing pains, it doesnt hurt to cough or breath.

Thanks for taking the time to read.:)
 

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Hi Lou

Welcome to the forum. Im sorry to hear about your difficult health issues but delighted to hear you have got a referral to a Rheumatologist. I hope you wont be too long waiting on your appointment.

A couple of things I wanted to say..

There are a range of autoimmune conditions, any of whom could be causing your symptoms, so keep an open mind when you talk to your Rheumatologist. The fact that your Mum has Lupus would probably increase your chances of having it by around 10% at most. You mentioned a few symptoms which are definitely worth persuing with your specialist.

1. The dry eyes: Have you heard of a condition called Sjogrens Syndrome? It might be worthwhile having a look at the symptoms and see if anything rings a bell for you. Here is a site which you will find useful for that. Sjogrens can exist on its own or can co-exist alongside another connective tissue disease such as Lupus. Make sure you talk to your Rheumy about your dry eyes.

http://www.mayoclinic.com/health/sjogrens-syndrome/DS00147

2. Your bouts of Lymphoedema: Definitely mention this to your Rheumy. While there are many causes for this, it is an inflammatory process and could very well be of value to your Rheumatologist in trying to diagnose you.

3. Your photo-sensitivity - If you can take pictures when your rash comes on, this would be very helpful as well. Many people find that their rashes run and hide as soon as there is a mention of a Rheumy appointment ;)

4. Your pregnancy history - Have you heard of a condition called Antiphosphilipid Syndrome (APS)? Its also referred to as Hughes Syndrome. Its an autoimmune disease which can either be a primary condition on its own or a secondary condition to Lupus. Here is a link which will help you understand it better. Miscarriages are one of the features of this condition

http://www.hughes-syndrome.org/

With regard to your question on breathlessness and chest pain, it would be very unwise to ignore chest pain of any sort - particularly accompanied by breathlessness. There can be serious underlying reasons for these symptoms and my strong advice would be to either get to your doctor or go to A & E for evaluation. Tightness around the chest is a warning sign to get immediate help. Its really better to be safe than sorry.

Best of luck and let us know how you get on
Joan:rose:
 

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Hi and welcome to the board.

I can not add anything that Joan did not already tell you. She has given you great advice here.

When is your doctors appointment? I do hope you do not have to wait long to get in.

Do NOT ignore chest pain. I do think if your still having this issue you may want to get to a GP or ER as soon as possible. Listen to the story your body is telling you.

Good luck and let us know how you make out moving forward.
 

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Discussion Starter #4
Thanks folks, my rhemy apt is April 7th so not too long to wait eh. I have been having a look on this forum and found some tips on what to take with me and information to have wrote down for them so I do not forget.

I also found an interesting thread that completely describes my chest discomfort "Like someone is sitting on my chest". Apparently she was told its all part on the inflammation and it stands to reason that if i am swelling up externally, i could also be swelling internally. I just thought (wrongly) that internal inflammation would not happen for a long time. (silly eh)

I will be keeping an eye on it and I mentioned it to the nurse at the drs yesterday (smear test :mad:) and she just told to keep eye on it.

Regards

Lou:)
 

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Lou, Please google the term Costochondritis, I believe this is inflammation around ribs. Chest pain should never be ignored. This is how I was dx with SLE. I was having chest pain, went to ER and the MD noticed how blue my hands were. (raynauds) He then started the process of labs, and in 2 weeks my dx of Lupus Was determined. And life goes on only not quite the same. Best of Luck, Rose
 

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Hi Lou,

I would go to the doctors and get your chest checked out - perhaps you have picked up a chest infection!

Take care!
 

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Lou,
I am happy that you found the site. It is hard to say whether lupus is the cause of your symptoms but they do need to be looked at by a specialist like a rhuemy. I have the shortness of breath like you are talking about and it is pretty much there most of the time along with the bruised feeling in the rib cage area and the shoulder and shoulder blade area, and some in the front trunk area. I would add this to the list of symptoms and see what the rhuemy says but I would also get in touch with your gp and see what he says if it is something to worry about or if he wants to do any tests now. I hope you are feeling well and doing well also.
 

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Discussion Starter #9
Hi Tammy,

I too am really glad I found this site at least i now know i not going mad. I just feel like my Dr is as much use as a chocolate teapot and he makes me feel like a hypocondriac. I may try and get to see one of the other dr's i think. The shortness of breath definately gets worse at night time but as for the discomfort (not stabbing pain) that comes and goes throughout the day. I assume yours is due to the lupus, what did they call it? Ive heard Costochondritis mentioned.

Lou
 

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Hi Lou,

I have almost the same same symptons, pain in my back, breathlessness, someone sitting on my chest and generally achy feeling. I have asthma though, and my doc keeps telling me its just my asthma, increase my inhalers, 3 lots of steroids, but yet its still there. I feel like they just think im a neurotic patient sometime, but its really scary,especially when I like down. I do wheeze like ive swallowed a cat when i lie in bed. I see rheum on 25th March so will speak to him.

Take care.

Mx
 

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Hi Lou and welcome,

The feeling of someone sitting on your chest can describe a lot of things. One of them being asthma. It's wise to see your GP about this even if you have to go to someone else. If it's something to do with Lupus someone else might spot it and if it's not it will save time when you have your consultation with the Rheumy. There's a lot to go through in that first consultation.

Good luck with the Rheumy, do let us know how you get along.

love
Lily
 

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Discussion Starter #12
Hi all, just thought i would let you know, i have been to the docs this morning as my chest/rib pains and shortness of breath seemed to be getting more constant. He ruled out heart and lungs and said given the rest of my symptoms then he would say that its probably inflammation around my chest. Im going for an ecg on Monday so that he can send results to the rhemy and told me to make sure i tell him when i go next month.

I enquired to wheither it could be the ibruprofen im taking as it does state that they can cause chest pains & shortness of breath, but doc says no.

So i got to put up and shut up eh.

Lou :)
 

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Hi Lou,

I am glad you saw your GP and that he's checking things out. I wonder if he thinks it is something called costochondritis (it's inflammation of the chest wall) ? Does it hurt when you press on your ribs?

I hope that your Rheumy appt is soon so you can get more info and get some relief from this?

love
Lily
 
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