Hello my name is Kennan and I've been treated for Lupus for over 6 months, symptomatic for over 10 years (off and on) and still haven't received a definitive diagnosis. My rheumatologist says I am "autoimmunish." I have had one positive ANA and some abnormal complement levels but everything else is self reported symptoms. I was searching around online and noticed Sandi's description of a symptom I've been having that has been difficult to describe to my doctors. Along with the night sweats, muscle weakness, fatigue and joint pain (as well as other symptoms), I have had the "creepy crawly" and "flu feeling" continuously for 3 years (progressive). I don't take my pain medication (Tramadol) as much for the joint pain as I do for this terrible sensation I get that the Tramadol seems to help with. At first I thought it was withdrawal but after many on and off again trials as well as assurance from multiple doctors that it couldn't be, I realized it was just another symptom in the litany of systematic difficulties I've been having: severe joint pain, bladder problems and this fluish feeling that feels like I have the heebie jeebies, numbness and tingling and memory difficulties. Sandi seemed to have similar symptoms and, in addition to being treated with Plaquenil (like me, which has helped along with a gluten free diet for some reason), mentioned low iron as a possible reason for this fluish feeling and had some luck with OTC iron pills. Has anyone else had this symptom and what has helped for you? Right now I take 600 mg Plaquenil daily, 1800 mg Gralise (which works well) and 300 mg Tramadol daily. I feel like a druggie constantly but have gone on and off meds and know they are all helping and not hurting from trial and error (also Effexor 75 mg and occasionally clonopin to sleep). I usually function well on this regimen but lately since the weather got warm i am so sick. I wondered if more vitamin supplements would help especially the iron. I already take vitamin supplements including vitamin D and multivitamins. I still get up 2-3 times a night to urinate or sometimes due to the flu feeling. Thanks for any advice. -Kennan
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
Last Count - 344k - 6-9-18
Thank you received: 2338
Autoimmune disorders can take time to develop enough for a diagnosis, so you are basically in limbo until then. It sounds like possible Lupus but until your labs show more elevated results, they can't give a diagnosis. I've read that Plaquenil can actually delay or even prevent Lupus, and that is a good thing. I had symptoms before being diagnosed too and I was actually happy that there wasn't a diagnosis. I didn't want Lupus. My doctor also helped me to manage it and that's all they can do. Once you get the diagnosis, there isn't much more than they can do and the symptoms remain the same.
I had to find things that helped through trial and error on my own. A few years ago, I fund out that my ferritin was low through routine blood work through my rheumatologist. She wasn't concerned because I wasn't anemic, but I looked up symptoms of low ferritin and found that RLS can be a symptom. I'd had RLs and problems sleeping for two years and no one could figure it out. As I said, I started taking an OTC iron and within two weeks, it went away. I have also found that Magnesium Malate helps the muscle pain and bladder problems. It relaxes muscles. I think my bladder problems are due to inflammation which is common with Lupus. I take many supplements daily, no multi's. I have about 10 or 11 different bottles. I can list them later if you want. I also take a few scripts: Plaquenil, Prednisone, Flexeril, Norco, Xanax, and Naproxen. I still have many symptoms and always feel fluish when it rains or is cold outside.
Eating healthier can make a difference. I try to stick to gluten-free, organic, no sugar, basically Paleo. I've slipped lately due to family problems and little time.
All I can tell you for now is to try the Iron and Magnesium Malate. I got the Magnesium from Amazon, it's not sold in stores. The Magnesium that is sold in stores is Oxide and it's useless.
The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.
Platelet Disorder Support Association 8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141 Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003 E-mail: firstname.lastname@example.org