Introducing myself
Hello, my name is Nicole. I was diagnosed with lupus about 31/2 years ago. I recently moved to Albuquerque New Mexico and I’m trying to find a new Rheumatologist. (Which I’ve come to learn is hard).
This last year my symptoms have increased and I take BENLYSTA weekly, but I feel like I have been in a constant flair for at least two months. My bloodwork is all over the place and I see no help in site anytime soon. I’m 42 and I move like I’m in my 80’s hurt all over, have what feels like vertigo and I take more meds to try and control all my symptoms. I hate this disease, it has completely ripped every part of who I am away from me. I feel helpless And depressed. I’m red of hearing “you don’t look sick” or “maybe diet and exercise will help you”.
Hi,
!
I am glad you took the time to introduce yourself to the community. That said, I am so sorry you are hurting and still trying to find a good rheumatologist. It's definitely not a great time to be trying to find a new doctor, I know. It sounds like Benlysta may not be working for you, or at least not at the current dose, though please know I am not your doctor and only you and he/she can decide when to stop or up a med. I mean, the goal is to reduce those flares and slow the damage being done to your body, so, if your numbers aren't looking great, it may be time to talk to your doctor about other options. But, as you already mentioned, you are still on the hunt for a rheumatologist. Do you have a general practitioner helping you right now? They can prescribe medications for your Lupus, but I understand if you would prefer to see a specialist.
And, I know too may of our members can relate to the oh-so-(not)-helpful comments people throw your way, from the "but, you don't look sick" to the "but have you tried the so-and-so diet?". It just adds to your burden.
Please know you are not alone here!
Best, Erin, Team Member.
,
I just wanted to share my frustration on what you are going through.
I'm including a link that might be helpful in your search for a healthcare provider (rheumatologist) in your area: https://www.lupus.org/resources/finding-a-new-doctor.
In the meantime, please know this community is here for help and support.
My best, Doreen (Team Member)
