Hi
I have my appointment this Thursday , feeling anxious has I was not able to tolerate methotrexate has my liver function blood test went upto 91 . So I’m to start on another medication and hope this agrees with me . I already take hydroxi .
Trouble is I have sooo much to discuss , and I feel there is never enough time . I’ve been flaring more than usual , my elbow areas both sides are very painful , lifting anything just hurts an awful lot more .
I’m sooooo tied of been fatigued. sleeping and feeling the need to lay down most of the time .
I also have severe trapped nerves in my cervical area .
Waiting and waiting for treatment , has left me to fall more and more into depression . After waiting well over a year to see a specialist , I’m now been sent back to physio due to not having the running pain, yet still having pain and parts of my arm is fairly numb and not much feeling in my first finger end .
I now have pain in my middle back area this started several months ago .
I feel that treatment at times is not has it should be , I recently asked for a copy of my medical notes .
I found a few comments from different practice doctors Really offensive . Due to the overwhelming problems and pains this disease lupus and sjowgrens causes , I do wish that practice docters could be more thoughtful in writing notes .
After one visit when requesting pain relief for severe pain , my doctor wrote at the end . What next ? .
Another practice doctor wrote that he was going round in circles trying to explain to me .
God help me if I don’t understand all the medical terms and need to ask questions more than once .
Surly writing notes like this is unacceptable and down write diss respectful.
I’m now reluctant to go to my usual practice doctor who clearly sees me , as not worthy of respect .
I wonder how many people get to see their full medical notes and read quotes that no one should be writing for other professionals to read nowadays .
I’ve had to give up my job due to my many health problems .
Somehow this label lupus patient , to me feels like I should be treated with less respect .
More education is needed has regards to understanding how at times this illness can really knock you for six , mentally and physically .
I know it’s late , but I just feel like venting my feelings somewhere where I know I can be understood .
I Also wondered if anybody still reading has or is having problems with body twitching . As for the past few months I get a single type movement twitch . It happens mainly in my arms or legs . I sometimes get a full body jerk . I do have irritable leg syndrome , this is something completely different . I did mention it at my last rhumy appointment , this just got written down . No mention of what this worrying symptom might be .
Looking on the bright side , I’ve just booked a couple of short courses . Nothing too taxing .
Thank you reading this rather long read .
🦋🐌🐝❤️.
But some others think the opposite XD Which medication are you on now? I think Hydroxycholoroquine is the one with less side effects of all the arsenal 
but it's not enough for treating our lupus. 
First appointment at Bath, Lupus Centre of Excellence
Yesterday’s appointment at Dermatology 
Repeat Medication not done by GP Practice/Chemist😞 What else must I do? Is there anything more practical can be done? 😭😭😭
Further harrumphing!
