I'm feeling really down and frustrated. I've just had my appointment with neurology today and I was really hoping for an explanation for all the pain I'm in, but it was fruitless. The good news is that the meningioma that showed up on my MRI doesn't need treatment (surgery) but does not account for any of the widespread pains I'm currently getting (on top of the lupus joint pain):
-hurting all over with a debilitating fatigue
-burning tenderness in my arms and legs, particularly around the elbows and knees (+right foot)
-shooting/electric shock pains mainly down my left side but also in my elbows and knees at times
-tightness and pain in my muscles, with spasming and twitching at times
-stiffness in the mornings often leading to flu-like aches all day (sometimes severe and keeping me in bed)
-my IBS has also got worse (mainly at night)
-stiff neck with glands up (often with sore throat and migraine-like headaches
I was hoping that the neurologist would be able to diagnose SOMETHING but he just offered me pain meds. I suggested that perhaps I might be developing Fibromyalgia, but he didn't know anything about it. He even tried to tell me that it couldn't be that because I had Lupus already - but I know at least 2 people who have both. After pressing him for SOMETHING to help me that wasn't just drugs, he said he'd write to my GP and suggest I get referred to a Fibromyalgia clinic in London. If only I was well enough to travel to London!! I can barely get out of bed some days! He was really crap at listening to what I was saying. The way he was talking to me was undermining my confidence in myself and what I know about my body. I left in tears and feeling like a mental case. Thank goodness my husband came with me and could reassure me that he was just a blinkered arrogant specialist doctor who was rubbish at listening.
At least I've now been on LDN for a month, and I'm noticing a definite improvement in my mood. I no longer feel desperate like 'I can't bare my life'. I won't be needing anti-depressants now. I might also have noticed a slightly better tolerance to pain, but it's still early days.
Does anyone else here have Fibromyalgia as well as Lupus? How did you get a diagnosis? I'm thinking my Rheumatologist should be able to diagnose this so why isn't he? I've told him about these symptoms, he should know what it is! Has anyone else started to question yourself after talking to doctors - after they make you feel like you must be crazy?