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Sjogren's Syndrome Support

Feeling frustrated

I am wondering if anyone else are dealing with the same issues and could use some moral support. I have a few autoimmune diseases going on at the same time. Sjogren’s, Primary Biliary Cirrhosis, Raynauds Phenomenon, fibromyalgia, neuropathy and osteoarthritis with minor bone deterioration plus thickening of the ligaments. I’ve been in the emergency room 2 in a week because of my liver i finally kept and food down today for the first time in 12 days. The new nausea med and pain meds seem to be helping so far. But on to my main frustration my PCP dr is pretty good at looking at the whole picture my the rest of my doctors seem to not realize having all these illnesses change the dynamic I was sent to a pain clinic because of my constant horrible pain I’m in Ive walked with a cane for a yr and I just turned 36 so I go to this dr and tell him everything he completely blew off all my joint pain and scheduled therapy for my back and refused to do anything for my pain and told me to contact my rheumatologist and pcp about my other issues. Who does he think sent me there my rheumatologist doesn’t prescribe pain meds and my pcp only gave me enough until I saw him. But now all of my health issues are combining into one huge problem Im going to a new liver specialist july 7th ive been waiting two months to get in. Im so sick of going to the ER but thats the only way to get help why can’t these drs see the big picture does anyone else have this problem where they feel like all they do is get the run around.

Also I am in the beginning stages of liver failure because of the PBC

Tiffany, I can't help with any of the medical issues... but do feel for you with what you're going through, and sympathise with your battle with the medics; I think everyone on here has probably had a taste of that! Your PCP sounds really helpful; can you go back to them and explain the difficulties you're having?

Sending you a big hug, and keep fighting!

Thank you Jules sometimes it’s just nice to know that someone gets it. Sometimes just because people can’t physically see there is something wrong with you they just don’t understand your struggles thats why I love this page. My PCP is normally great and I love her I have an appointment at the end of the month with her but she just added to my frustration this week because I called her 3 days straight with no response and thats why I ended in the er I know the get busy but her nurse could have at least returned my call. Ugh oh well it is what it is I can’t change what happened so I just have to keep moving forward. Thanks again

It really is sad that your doctors aren't working as a team. It is scary that specialists can get tunnel vision to that extent. I am still holding out for SS to get attention so we aren't always fighting the uphill battle with the docs. Dealing with the disease is enough. Hang in there. Sending gentle hugs.

Thank you very much