This is my first time on here, I stumbled across this site whilst desperately looking for an answer to what is wrong with me. For the last year I have been suffering with very achy muscles and limbs, especially my arms, but this affects arms, legs, jaw, cheeks, hands, feet, well pretty much my whole body. I am constantly tired, have no motivation or concentration, I get bad headaches, anxiety, constipation, loss of appetite, trouble getting to sleep on a night, sciatica, have had 2 water infections and a kidney infection this year, always catching bugs, reoccuring swollen glands in my neck, generally feeling unwell, recently a really stiff sore neck where my head just feels too heavy to carry anymore, vitaligo, memory loss, brain fog, slurred speech, hair loss (and recently a return of alopecia areta from 3 years ago), sore throats, shortness of breath, mouth ulcers, extreme thirst, heartburn (but this is ongoing from having h.pylori 2 years ago so not sure if connected), backache (also ongoing for many years now) and often i wake up feeling like someone has been playing football with my organs whilst ive been asleep. These symptoms all vary in severity and change on a daily basis. no day is the same. I am 23 and my auntie had lupus (diagnosed at about my age) and her grandmother also had it. I was refered to see a rheumatologist by my gp in march, after blood tests showed a slightly raised anti-dna (i think thats what it's called). But my rheumie said as he couldn't see any of my symptoms it was hard to diagnose me, he also did the blood tests again and they all came back negative (but my sumptoms had eased when he did the bloods, then they flared back up a couple of weeks later). He says he is not ruling lupus out, but thinks my symptoms might be caused from a viral infection and the muscles pain could last up to a year, but I can not remember having a viral infection. Anyway he said he would see me again in 6 months (this was in june) and I was to get the bloods taken at my GP surgery a month before my appointment to see if they had changed. I have my appointment for January but I can not bare to wait this long.
I have been prescribed naproxen for the pain, which made me ill, so they changed them to diclofenac, which did nothing for the pain so I have just started on amitriptyline (20mg before bed) but as of yet this is not reducing the pain (though is helping me get to sleep). I am also taking at leat 4 anadin (muscle and joint pain) a day which sometimes takes the edge off the pain. But I am wary about taking more than 4 as I have been taking them for months and worry about the damage they could be doing to my body. The GP who saw me the other day (who prescribed the amitriptyline) says she will speak to rheumie about maybe bringing the appointment forward.
I've just had enough of it all now, I feel so low and miserable about it. I'm made to feel like a hypocondriac from professionals and it has even made me wonder if is all in my head at times but then i think why would any one want to imagine in their head that they are in pain??
I just feel so lonely and trapped inside this body. I just feel like no one understands, as my pain is invisible. My partner is really supportive but sometimes i just feel like he doesn't believe me about how I am feeling and I feel like all I ever do is complain about how rubbish I feel, but really I don't even mention half of what I am going through, as I am kind of at that point where I just shut and put up with most of it. I just feel let down by medical professionals, would they leave someone with a broken arm without treatment for so long? no, but because you cant see my symptoms it is ok to just leave it? One GP even said to me if I don't get a diagnosis then i will just have to learn to live with it, and that he ahs trouble sleeping but he doesn't come and complain to his doctor about it! I thought to myself no wonder you can't sleep, thats your conscience telling you you are a horrible man!
I apologise for such a long post but I'm totally at a loss. Please can anyone tell me if they think this is lupus? or if it isn't what it could be? can you have negative blood results and still have lupus? Thanks in advance for any replies.