Sick of feeling crazy

I do my best to stay positive but today I am just so tired of it all. I just came from my rheumatologist who doagnosed me with fybro a few years back.
My dermatologist tested me for immune stuff and found I have a C2 complement deficiency which is linked to auto immune stuff. I have all kinds of other problems in addition to Fybro. I have interstitial cystitis, neuropathy in my legs and head, osteoporosis, thyroid problems going from hypo to hyper, chronic widespread pain, 20% weight loss and I wasn’t overweight, feet and nerve problems, some kind of purplish spider rash up my legs, hair falling out, GI problems. And today at my Dr apt he acts like I am fine. Well you bloodwork and cholesterol are good he says. You look good. He says the dermatologist never should have tested you for C2 complement deficiency. He said she only should test you if you have lupus and you don’t have lupus. (Only 30% of people C2 deficient have lupus so what he said made no sense). He just brushed off every single thing I mentioned and when I said I am getting to the point I am going to have to quit my job he said I hear you. I don’t even know what he meant by that. I make very good money and I wouldn’t get a small fraction if I become disabled. I wasn’t joking and I am just so tired and feel so alone and I just feel helpless and hopeless atm.
I’m sorry to just rant and rave but can anyone relate?? Am I expecting too much from my Dr, am I not approaching him correctly, should I be more assertive so he understands? I have no confidence and dread seeing Him.

I urge you to see a functional medicine or integrative medicine doctor. There are many who take insurance. They will have a much better idea how to manage a multi-systemic illness like fibromyalgia, and help you address the other issues as well. They are not scared of a challenge and approach people holistically. I am very sorry for your doctor's insensitive and belittling words. He's wrong. You deserve help.

One way to manage some of what you describe is the mind-body approach. It basically uses your mind to re-train neural pathways that cause and/or perpetuate chronic pain conditions. (This does not imply that you are imagining any of it! Your pain is very real.) A mind-body app that might be a nice place to get started is Curable. Go to their website and see if it resonates with you. It has helped a lot of people with fibro, neuropathy, IC, migraines, and other sorts of chronic pain. Some of the exercises also help with chronic stress, which is not just emotional but can be a physical habit your body gets into, and can mess with your hormonal systems, including thyroid.

Above all, trust yourself. This stuff can be so hard! Sending good vibes your way.

Sara (Lyme, ME, fibro, HPA axis dysfunction, POTS)

You are welcome! I am wondering about your doctor too. I definitely would check out a different rheumatologist. There are still some doctors out there that are in the Dark Ages when it comes to this illness. You want a board certified rheumatologist and if they are a Diplomate that’s even better. They have to stay on top of the newest info in medicine and are tested in order to keep the title of Diplomate.

If you don’t have a fibro support group in your area, do check out an arthritis support group. They would know good rheumies in your area. Also if you have a name, check them out on healthgrades.com or vitals,com. These sites tell you about the doctor, where they went to school, if they have any legal actions against them and there are patient reviews too.

My Internist gave me a couple of names of good rheumatologists. Then I was having my hair cut and asked my hairdresser since she hears all sorts of things from her customers. She said she had a customer with severe rheumatoid arthritis and has gotten great results with her doctor. She stopped working on me, called the other customer and got her doctor’s name. It was one of the names my Internist gave me! So I did the search, liked what I saw, made an appointment and I’m so happy with this doctor. Yes, he is a Diplomate too and so is my Internist, Gastroenterologist, Dermatologist, Ophthalmologists, and Gynecologist. 😊. If I’m going to see a doctor, I’m going to find the best ones out there.

I hope this gives you some ideas.

Sherrine

Sareli
Thank you for your suggestion. I am going to look into that alternative type of help. I spent a little time yesterday looking up functional and integrative medicine in my area but need to research more. I am open to everything and feel my Rheumi is just so in the old school box.