I realise this topic has been discussed before, therefore I do apologise for bringing up again but I am feeling quite desperate and in need of some help. Also I can't remember what was said before. Lol.
Two years ago I started getting a lot of muscle pain in my arms. This progressed to my legs and across the top of my shoulders. One morning I woke up and could not get out of bed. Fortunately a friend happened to visit and rang the ambulance.
The hospital Doctor gave me a large dose of prednisone and the pain quickly improved. Since then I have been on a roller coast ride of seeing Doctors, Specialists and having tests.
Most of my blood tests all come back negative. I have had several high CRP tests (indicating inflammation) and my Thyroid Function test was positive for Hashimotos.
I also experience the following symptoms -
Fatigue
Depression (medication resistant)
Malar Rash
Rash on the sides of my feet (flares at night)
Rash on the back of my hands
Costochondritis
Blood clot at the back of my leg (felt like torn hamstring)
Headache after being in the sun a short time
White fingers (at times)
Occasional low grade fever
Short term memory loss
Muscle pain is everyday
I have been taking 10 mg of prednisone for the muscle pain and when I try to lower it, I flare. I need to get off it. This week I sensed my Doctor was starting to doubt how bad I feel. Has anyone ever experienced having so many symptoms with no supporting blood work? Can it take time for antibodies to show up?
Yes, you can feel worse than labs indicate. It’s certainly been the case with me. And I second Ann’s comment. Vit D or thyroid ALONE can cause all of these symptoms, if you have both with or without lupus you’re already gonna feel bad. The good news is that Vit D and thyroid are easy and cheap to treat and getting that squared away can really help if that’s what’s going on.
There are certainly people that don't have the blood tests that support lupus. 1% of people with positive lupus have neg ANA as I do. It is rare but does happen.
However, there are so many other contributing factors (which is why docs don't go with one symptom is diagnosis) and certainly Vit D as well as low Iron can be very devastating to the body especially with your thyroid issues.
If you haven't seen a hematologist I would certainly suggest one if for no other reason than the blood clot. There is a "something" steel syndrome that hardens the arteries quickly and slows blood flow to the brain, which can cause many of the symptoms you have described.
Please ask for a referral (if you need one) or get in to see the correct doc ASAP.
hi nic. i have 9 of the synptoms that you list. our problem in australia, or at least in melbourne is that we have no lupus spe ialists. my blood work comes back like yours but have all tbose symtoms. i wish you all the best.
Have you seen a rheumatologist? We don't have "lupus specialists" where I live, but most good rheumatologist can diagnose and treat lupus. The hard part is finding a knowledgable rheumy.
I have all your symptoms and more but my blood tests are always negative for lupus. I had a very hard time being diagnosed and was pushed away by doctors for years. Finally one doctor followed me for year and a half knowing something wasn’t right. Until it flares badly in my brain and showed on brain spect we confirmed lupus. So blood work isn’t always a positive factor. Lupus is a tough one to diagnose. It has been a fight. Good luck to you!
I second all that's been said and am experiencing the same thing. It is very frustrating, especially when you begin to experience the doubting. It can take awhile for the Vitamin D issues to get resolved. Mine was very low (12) and it took several months to get it up to even a low normal level.
You also might want to have your B12 levels checked. I just had mine checked due to some neurological issues I'm having. It was low normal, but apparently there is some question about where the lower limit is. In Europe and Japan they've raised the lower limit because people can experience some of the issues you are describing even with levels above 200. Mine was 333. I hope you get the treatment you need and that they figure out what is wrong. Hang in there!
Hi Karen - I used to live in Melbourne and I was diagnosed by Andrea Bendrupps (not sure I’ve spelt that right) at the Royal Melbourne hospital who went through all the symptoms I had and then asked the student how many you needed to diagnose lupus. I think it was 8 and so I finally got a diagnoses. I couldn’t afford to keep seeing her so now I see Dr Clemens at St Vincent’s and he has been great. You can get your gp to refer you to any rheumatologist. I hope you feel better soon!
Hi all, thanks cof your replys. Yes i see a Rheumatologist in Ringwood, melbourne. Ive been seeing him for 17 years now and he has kept me going, but it would be nice to see one that actually specialises in Lupus.
Hi!! Stop stressing? The Lupus tests are very tricky and it does take time for the doctor to get to it. Maybe he/she is giving you the meds to see how your body and blood response? Everything will work out just hold on !!!smile. Am not a fan for needles but relax it will be okay soon…Beverly L.