I've been in bed for about 3 yrs now. I can barely get up to brush my teeth I'm so exhausted! I have lupus, fibromyalgia, chronic pain, severe DDD (bone on bone from L3 thru S1) bilateral hip pain, headaches, deep bone pain and toxoplasmosis (since birth). I have also had stomach issues all my life. I live in the USA and have no insurance or assistance from our government! Can someone please HELP me? Newly diagnosed with lupus from positive ANA and symptoms, high sedate and C-reactive proteins! Thank you so much for being here. Blessings to ALL who have to endure. Cynthia
Meds for chronic fatigue : I've been in bed for... - LUPUS UK
I am in the UK . I recently started a tablet called hydroxy and it has improved my fatigue greatly . I am able to go to bed later and actually enjoy more of the day . It hasn't helped with my arhritis pains . I still get them everyday .
I hope you find something soon that helps you !
That seems to be quite a catalogue! I wonder what medication and treatments you are currently on, and what (if anything) has helped in the past?
Hello, I have been on pain meds for 12 years now. It started with 3 herniated disks and bilateral hip pain. Have had 7 miscarriages (no living children) and a full hysterectomy at age 25. For years I have always just felt unwell. My blood work would always show high WBC (white blood count) in the 15,000's. Drs assumed I had an infection. About 5 yrs ago I had a test done that showed I was milk and soy allergies and had toxoplasmosis (hence the major stomach pain I guess). I've always thought I had lupus but Drs continued to say no! We'll finally in 2014 blood work showed positive ANA, high sedate & high c reactive proteins. I feel like I have the flu everyday of my life along with fibromyalgia pain all over my body. My hair even hurts. So as far as meds, I'm on duragesic and dilaud. When I can get a medrol pack I can usually have one to three decent days out of bed. From responses I've received I'm gonna ask about this hydroxy!
I still have problems with fatigue. I would love to have further improvement. I agree that Plaquenil (hydroxy) did help a lot with my fatigue. I'm not crashing in bed at 7pm anymore. BUT, now that I'm better, you get a little spoiled and want more!
I was looking back at my old symptom journals that I kept for my dr and it's clear how improved things are.
Thank you so much for taking time to share! Next Drs appt I will be asking about hydroxy! Hope you feel better as well!
Thank you so much for your response! I will definitely be checking on this hydroxy. I'm so tired of being exhausted constantly! Blessings to you and hope you are feeling well today!
Thanks for the information, Cynthia. I wonder whether your doctor is a rheumatologist - the drugs you mention are 2 opioid painkillers and the steroid prednisolone. Although many people with auto-immune disorders like lupus take pred, it's quite usual to take an immune suppressant like hydroxychloroqine as well.
Another issue that might be worth considering is the quality of sleep that you get at night. Like some others here, I take amitriptyline at between 10 and 50mg a day. At these doses, it is supposed to help with pain, but also to improve the quality of sleep.
I should add that drugs are not the only way of treating our problems - but maybe that's for another time!