Can anyone help? I have suffered for over 20 years from an autoimmune problem initially told it was due to my liver readings being on an alcoholic level, the test showed it could have been Lupus but wasn't tested for it until last year when my body broke down.
I spent most of 2013/14 very ill resulting in hospital admissions. I have SLE Lupus, Fibromyalgia, arthritis, eye problems due to the Lupus and suffered with severe kidney problems. I have 3 prolapsed discs and one beginning to disintegrate.
I weaned myself off the steroids as the weight was affecting my back.
For the last 6 months my skin has progressively itched and now I am getting nerve pains 24/7 so I am lucky if I sleep 3 hours and only then when I am so exhausted. I have been finally prescribed Pregablin at 25mg per day which does nothing and have upped it to 75mg but still I cannot stop the nerve pain. Now my limbs are weak and I am exhausted.
My GP is not interested, she is not happy that I asked for a change of specialist as the one I am supposed to see rarely sees me, she only gave me a 'proper' meeting when my husband pains for a private session with her, now that I have lost my job due to the illness I cannot afford to pay for another. I asked to see one of the previous ones who was excellent. This specialist was rude to me and patronising in front of my daughter as she said Lupus sufferers do not get itching skin! My GP is not happy that I have asked for another previous specialist to continue my treatment, she does not know that one of the hospital organisers told me they were in meetings about my choice to change. My GP now says everything is due to the Fibro and when I told her that in my Lupus group others have itching skin she told me I was wrong and not to listen to other people or go online. What can I do? I can't live with this itching and nerve pains.
I am having back injections in a week's time so maybe this will help. I feel like I am on my own in this.