6 years with no diagnose

[Dalollies]

I have had these symptoms for 6 years. I have seen many doctors with no luck. A doctor at a University to me I have fibromyalgia and I just need to talk with a psychologist. I feel like I am going crazy. I get a butterfly rash, fatigue, ache joints, hot flushing in the ears and eyes. Voice loss and trouble breathing when I talk but my oxygen is fine. I know the hot and voice loss isn't noted with auto immune. I am at a loss....

[Gcart]

I was diagnoed with lupus. GP offered simple Pain control , anti inflammatory. 1 a day . I couldnt take them because of side effects .

I havent been referred . Its been a year since. Guess mine is fairly mild from what I have read .

Because if other health issues I went GF and as a result a year on have made some very welcome improvements .

Just letting you know as it could be a way you could help yourself in the current journey you are on.

Continue seeking help though in the mean time.

Hope more help comes along on here soon for you. Good luck

[chrisj in reply to Gcart]

Can I ask..what is GF???

[Gcart in reply to chrisj]

Sorry. It’s gluton Free . I did it as I understand it can help lower antibodies. I was reluctant at first but a year on there is no way I would go back on gluton.

[chrisj in reply to Gcart]

Glad its helped, its not something I'm very familiar with, thanks xx

[Aballard in reply to Gcart]

Yes, going Gluten Free is key... Our poor bodies have enough to deal with. I miss 'real' bread but the improvements (energy, low inflammation etc) have been worth it for the past six years.

[Gcart in reply to Aballard]

Yes. So much not known about our bodies yet to be discovered. Keep going.

[Dalollies in reply to Gcart]

Thanks for your comment..

[Chanpreet_Walia LUPUS UK]

Hi Dalollies,

Did you know that Fibromyalgia is commonly diagnosed during early stages of lupus? The FMA UK website provides information on fibromyalgia and its symptoms as well as useful links for local support networks, advice and over-lapping conditions: fmauk.org/

Joint pains, extreme fatigue and skin involvement i.e. experiencing a malar (butterfly) rash are all common symptoms associated with lupus. If you would like to know what criteria and tests are needed in order to make a diagnosis of lupus, read our blog article at lupusuk.org.uk/getting-diag...

[Shorthouse]

Just to let you know I used to get flushing & I lose my voice all the time with my lupus flares !we are all very similar .but not all the same.good luckx

[chrisj in reply to Shorthouse]

Didnt know lupus caused the voice hoarsness, I was told its down to Sjogrens, maybe a bit of both. My voice is troubling me now and I'm feeling tired so maybe there is a bit of lupus activity going on xx

[chrisj]

I'm diagnosed with mild SLE and Sjogrens, asthma as well, all of which are auto immune problems. At the moment I'm suffering with a hoarse voice, been a few days, no sore throat but it sounds like laryngitis. I was told its down to Sjogrens and a common complaint amongst patients diagnosed with the Sjogrens

Before finding out I had Lupus I had laryngitis all the time along with flu, Plaquenil seemed to stop it all. So having this hoarsness back again was unexpected but something I have to learn to live with. Burning up and "losing your voice" is very much to do with auto immune problems....at least for me it is

[Dalollies in reply to chrisj]

When you lose your voice do you feel a hot feeling in you face..it comes on then the voice loss?

[chrisj in reply to Dalollies]

Not particularly Dalollies, they're two separate symptoms. I can be sat quietly relaxing and will feel hot and uncomfortable without the voice problems, it comes and goes. Have you been checked out for Sjogrens?

[Dalollies in reply to chrisj]

Yes I have been checked for sjogrens and everything comes back negative..

[Dalollies]

Sounds like we have a lot in common...

[Aballard]

Definitely have yourself tested for Lyme (and co-infections) if you haven't done so already. I have Lupus but, 5 years ago, I was bitten by a tick and have suffered many complications since - particularly with respect to Babesiosis. With the exception of the Butterfly rash, I have all the rest of your symptoms. I know exactly how you feel and it's definitely a day to day challenge...

[Dalollies in reply to Aballard]

Thank you for the info....I have been tested for so many things and nothing..

[Elishaannxx]

Heya, I’m going through with the diagnosis of lupus and my face is the same as yours I have a butterfly rash, I’ve been to so many doctors as I’m always poorly and after seeing doctors after doctors for 1year this doctors looked at me and said I definitely think it is lupus so I’ve been referred to a rheumatologist and they think I also have rheumatoid arthritis xx

[nanleighh]

Hi Dallolies, I had symptoms for well over 10 years, but was told that everything was fine. I had joint pain, fatigue, chronic hoarseness, malar rash, Intermittent fevers, And pretty severe anxiety. I was told there was nothing wrong because the labs were all normal. I believed them and just went on with my life. But the symptoms never went away. In 2014 my symptoms came back very severely, with rash that went from my cheeks down to my chest. It was then I tested positive for ANA and anti-RNP antibodies. These antibodies are not conclusive for lupus but because of my symptoms that I had off and on over the years I was diagnosed with SLE. Don’t Let anyone tell you that it’s all in your head, you know it’s not. I’m glad you found this forum because you’ll find lots of support here. You take good care and read all the information they have on the lupus UK website it is very good. I wish you the best, Nan

[Dalollies in reply to nanleighh]

Thank you!! It makes me feel better to know it can take time to have your labs show something... it is so reassuring...