Morning everyone my name is steph I have had sle since 2003 was diagnosed straight after having my first son. It was awful I couldn't pick him up out of his cot the pain was excruciating I feel I missed out on the most important bonding moments. I've been on hydroxy chloroquine since 2003 also injected methotrexate for 8 years just before Christmas my consultant took me off it because I was feeling sick all the time but it had only just come on over a couple of months I'm now on azathioprine I can't feel it doing anything I'm in agony my gp gave me 6 weeks of steroids to try and ease the pain but a week on and there not helping either I'm so physically and mentally exhausted I have 2 boys 12 year old and 8 I have no energy to do anything and on top of that the pain as well my husband doesn't understand my condition I think he just thinks I'm lazy he does help me a lot in the house but I can tel he thinks I should do more but I'm also working part time most of my days off I spend a sleep cause I'm so exhausted my working. Thankfully when I was given the lower rate dla I was able to reduce a couple of hours work it helped a bit but my consultant keeps saying I should reduce more but it's ok for her to say it but we can't afford it. I'm sorry to ramble on but I am so down and don't have anyone around me who understands.
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