Multiple Problems Making Diagnosis (and Life) Difficult
I was diagnosed six years ago with no less than nine autoimmune disorders, the most serious of which are RA, limited systemic sclerosis, Sjögren syndrome, and antiphospholipid antibody syndrome. My secondary Raynaud's is severe, and there's a calcification running through my heart that has me on blood thinners and several other medications to try and ease the stress on my circulatory system and lungs. There are so many symptoms between these conditions (and side effects from all the drugs) and a lot of overlap, which makes it very hard to accurately communicate my pain and other frustrations with my rheumatologist and primary care team. I worry that something "important" is going to get missed or overlooked -- either by me or my doctors -- and I wonder what other people with multiple conditions are doing to manage their treatment and live better. I'm 52 and scared to death because there is no cure for anything I have, and I know it's all going to get worse before I die.
Living with multiple autoimmune disorders can indeed be overwhelming and frustrating, especially when symptoms overlap and communication with medical professionals becomes challenging. It's completely understandable to worry about important details being missed or overlooked. Many people in similar situations find that keeping detailed records of symptoms, medications, and concerns can help facilitate more effective communication with their healthcare team. I want to share with you an article written by one of our contributors that talks about their efforts to manage life with multiple health conditions- https://rheumatoidarthritis.net/living/multiple-autoimmune-diseases#comment-thread. While there may not be a cure for your conditions, managing them effectively through medication, lifestyle changes, and a strong support system can help improve your quality of life and provide some measure of comfort amidst the uncertainty. No matter what, we're here for you along the way -Latoya (Team Member)
Hi
my heart goes out to you! You are really managing a lot, and I can hear how difficult it is to community your symptoms and pain to the various doctors, especially when not always knowing what condition is causing what symptoms. You concern and fear that something important will be missed is understandable, and your fear of the future is something a lot of our community members can relate to. The good news is that, even though there isn't a cure (yet), there are a lot of different available treatments to help manage symptoms and increase quality of life.
I can hear how distressing this has been for you and wanted to ask, aside from your medical team for your physical symptoms, do you have someone to help you manage the emotional and mental aspects of living with multiple chronic conditions? I ask because often times emotional health can something be forgotten in the midst of managing physical health, and yet it is equally as important. One of our health leaders, Kelly, wrote about mental and emotional health and RA in an article I wanted to share with you, https://rheumatoidarthritis.net/living/dont-neglect-mental-health.
Of course, this community is also here for you anytime, so please don't hesitate to reach out. And hopefully some of our community members here can also share their experiences of managing their treatments and living better.
Sending you gentle hugs. -- Warmly, Christine (Team Member)
