Hi everyone sorry to come on here and moan as I know you all have your own problems and many will be worse than mine!!!
Basically my story is this; 6 months after my daughter was born (3yrs ago) my shoulder joint went completely, the pain was unbearable and I literally couldn't move my arm to even tie my hair up. This lasted months, had physio twice a week but didn't help at all so was given a steroid Injection which helped for a few months although shoulder was never the same. 6 months after that my shoulder went again so back t physio but then my other shoulder went and then they started alternating - so I went back to the docs and found a good doctors (very hard to come by) and I asked for another steroid injection but he said at age 30 I shouldn't be having this much pain in both shoulders so he did some bloods and this is how my SLE journey started (had never heard of it before) so the first set of bloods showed positive for the antibodies and the result was extremely high for what it should be (or too low I can never remember which is which :)) so he referred me to a rheumatologist, now by the time I got to see him my pain was having a break and I wasn't suffering the way I usually do so he basically made me feel it was in my head and ordered more bloods which he told me would come back normal. However they didn't and again were way below average so that and an eye test as my eyes give me so much bother plus the fact that my joints in my fingers and toes were now hurting, my doc was convinced it was SLE. This was a YEAR AGO and I am still waiting on an appointment with my rheumo to confirm this, so in that year SO much has changed. The pain used to come and go now the finger pain and toe pain is here almost every day with knee back and shoulder pain coming in waves.
If I stand for too long I literally can't walk my knees swell up and I am in agony.
In the morning I wake up In two ways, I am either so exhausted and in agony or I am wide awake but still in pain so takes me 30mins to leave the bed then I walk like a 90yr old for half an hr! I have a 3yr old so this is no good'.
My periods are almost non existent (nt sure if this is related but can't think what else) and im trying to expand my family and have been for 2yrs!
I am not fat but the heaviest i have been, but am going to the gym and eating the healthiest I ever have and still can't seem to lose weight!
I go to the gym and can only do light workouts or I literally can't walk for a week!
My emotional state is so up and down I feel like a mess, I can just get so low for no reason and this just isn't me at all which makes it harder to cope with!!!!
I get pins and needles in my hands all the time.
So many more symptoms that I even wonder are they in my head?
My problem now is after writing to my MP the NHS have told me I am not a priority case so could wait until the end of the yr unless I pay for private which I can't. I feel mad because they are basing this info on an app I had a yr ago where my symptoms were not as bad and that particular day was a good pain free day!!!!!
I feel the only one fighting for me is my doc but I worry he will soon think all these random symptoms are in my head!!!!
Sorry for long winded message just feel deflated and know my body and know it is not right!!!!!! xx