So right now, Its 2.03am in the UK, and I’m lying in bed, close to tears because the flare I’ve been expecting had just hit me like a truck. I knew it was on its way as I was exhausted despite sleeping for 12+ hours everyday last week but the speed it’s hit me at has just made me so down and reminded me I have very little control over my own body anymore.
I’ve not been formally diagnosed yet, and because my ANA keeps coming back negative, the doctors aren’t really focusing on lupus anymore, and I’ll probably be diagnosed with fibro. Any diagnosis would be welcome now! As silly as that sounds to people who aren’t experiencing what autoimmune dieseases do to you. Because I’ve not been formally diagnosed with anything, I have no proper pain relief, other than over the counter stuff. I hate having to take tablets and I wait as long as I can before the pain gets too unbearable but I can’t help but feel having some specialised pain relief would really help me.
I’ve had health problems for as long as I can remember, and at 19 years old, it really depresses me sometimes as I know it’s going to affect me for the rest of my life. I’ve been searching for a proper diagnosis for just over a year now, and I know there’s still a long way to go, but I just wondered how long it took everyone to be formally diagnosed?
I was diagnosed with fibro and arthritis first then 7 years later with lupus but I moved and started doing better and did not go back to the doctor for a long time. When I moved back home I went to the rheumy I had seen before and she diagnosed me. Their is also a group for fibro if you are not already on it. I have had a rough day and can not remember. Do not give up keep seeing your doctor until you get answers.
This disease is very unpredictable. I think I was diagnosed very early in its stages. I think others were not diagnosed for many many years. It effects everyone differently. The fatigue is the worst for me. The sun sensivity is pretty bad also. I have 3 skin issues. Hypothyroiism. The mouth sores were the worst til I was put on plaquenil. over a year ago. I'm just starting to get pain in my hands although they are always cold. You just have to learn to deal with it. Get the best health care you can. Make sure you tell your drs everything that i going on with your body. This site is excellent. Everyone knows what you are going thru. Hang in there.
I feel your pain as I sat in my room crying last night because I feel so sick. My rheumy treats me like an ignorant child and discounts all my symptoms, but he’s the only one in my area. At least my primary doc will always return my calls and prescribe the pain meds.
Since you are having so much pain.....maybe you have something like fibromyalgia or polyrheumatica. You might ask to see if your doctor has checked for these plus there are other reasons for pain. Where exactly are you having pain? Might not be at all connected to lupus. Most people i know that hurt with lupus, do so because they have RA as well..hurt like bad case of the flu in flares.
Motrin(ibuprofen) should help with your pain. It works as well or better than lower narcotic drugs such as vicodin. I would not use tylenol due to liver message that recently came out. IF you have had kidney problems ...then tylenol will be your main otc option. BUT why is not your doctor helping with symptoms if you are in that much pain? I understand that it can lower inflammation but now that they have done more than few blood work ups, they should know your average rates.
You might also ask for x ray, ultrasound or MRI in area of most pain just in case it is something completely different. This has happen to people more often than you would think. They get one thought in their head and do not look at other options. Good luck...make sure they are looking at not just autoimmune but all possibilities.
Hi Chloe, it took several years for me to get a diagnosis. I was 7 when I first started having weird symptoms and was 10 or 11 when I was finally diagnosed with Sjogren’s syndrome (I went on to develop lupus). The diseases present themselves differently in children and young adults than they do in older people. For example I looked like I had the mumps all the time from my salivary glands swelling, extreme fatigue, and joint pain. But fatigue in children can cause them to be hyperactive rather than wanting to nap and I didn’t know how to explain what I was feeling to my doctors very well. I strongly suggest you keep a diary of how you feel every day, where the pain is, what level your pain is at, different symptoms, anything unusual, etc… It really helps the doctors get an idea of your daily life. Good luck! Gentle hugs, Annemarie
I’m really sorry to hear that you are in pain. I was officially diagnosed only six months ago. It took me three years to get a diagnosis. Don’t give up. You know your body better than anyone else. Don’t stop until you get some answers. The fatigue and joint pain are the worst for me. I hope you find some pain relief soon.
Hi! Waiting is such a bigger pain than knowing-smile my pains started in Aug 2010got an appointment in Dec 2011 took SO MANY blood test for weeks and in Feb.2011’ the doctor came with the results-Lupus , rhematoid artherits , febro, and chronic pain . Boy talk about all at once-Boom! Well hope that your wait is not long , take care and best wishes…Beverly L.