Trying so hard not to be defined by my illness but it just seems to be seeping into every part of my life...

[karlyt]

So latest bit of news? Got "let go" from my job due to the severity of the lupus flares this year. My sickness levels were sky high, mainly due to seizures as a result of CNS. It's now been discovered that the seizures were in fact NOT proper seizures, but ones that are linked to a psychological problem. My heart rate did not increase, and I didn't actually pass out. Plus my muscles just shook (as if I were shivering) rather than actually tensing. I'm now being referred to a neuro-psychologist who may be able to help. I guess we'll see what happens. Since seeing my neurologist however, I have been to see a hypnotherapist (also a psychologist) who performs what's called PNI (psycho-neuro-immunology) and works with patients who have M.E. or Fibromyalgia. It's not really a recommended treatment for lupus patients who suffer with seizures, but hey, if they aren't "real" seizures, there should hopefully be some improvement! I'm praying for some improvement. Flares have been severe this winter. Arthritis is starting to make its way into my upper body, i.e. shoulders, spine, neck and jaw and is causing so much pain and discomfort I've been unable to sleep for the past 5 nights, I'm so tired I can't help but cry from exhaustion... No pain killers seem to help and to add to the rubbish, I've had my rheumatology appointments cancelled 3 TIMES in the last 3 months.... I've been desperate to see my doctor since August and I'm having to wait until the new year now. I wish someone could just give me something... Put me to sleep for 2 weeks! ='(

[Sher78]

Sorry u're having a rough time. I can give u a virtual hug lol! U'd still b knackered after 2 weeks kip (if u're anything like me!). Sorry 2 hear of the job situation, I had the same deal due 2 a continuous 2 year flare :0(

[Hidden]

Karlyt - I feel so angry with lupus on your behalf. It's horrid to be 'let go' because of something you can't help, and to be in so much pain must seem like the last straw. The NHS has far too few rheumatologists... I don't know what else to say - you're surviving lupus, so you must be tough. You'l get through this too!

Take care!

[brave]

sounds like you have a good neuro type support?its a shame you had your rheumy cancelled?i live in the channel islands so i havent been put foward to any kind of support network ,its like since i reacted to plaquenill quite badly ,im now taking nothing other than pain meds .My fibro is excruciating,ive asked for CBT so many times,i asked to go to pain clinic, ifeel like im banging my head against a brick wall .I think i just have to deal with this on my own ?its a sad lonely lupus world;(

[largesse]

Really feel for you. My daughter has SLE and I see what she goes through. Try and stay strong and listen to your body, don't overdo things.