Ok so I'm not yet diagnosed with lupus, but everything is pointing to it... I have so many symptoms and it's really scary.. My joins hurt constantly, and it's not just a little bit... They hurt ALOT! My hair is falling out... I have weird 'sores' on my scalp and I have ulcers... ALL THE TIME! But lately I've been developing this sharp pulsating pain in the middle of my back... Roundabout the kidney area... It doesn't hurt all the time but when it does it really hurts. I'm really worried I have a rheumatologist appointment scheduled for 1 February I've been waiting for this appointment for two months and the closer it gets the more worried I am no pain medication seems to have helped the pain and I just want it gone! What can the sharp pain indicate?
Kidney pains : Ok so I'm not yet diagnosed with... - LUPUS UK
Kidney pains
Don't panic yet! It may be relevant but it could also be a muscular problem - especially if it comes and goes. Think about when it is worse - and make a note. Having it written down and relating it to other things is helpful for the rheumatologist - but it may be you need a physio to identify what it might be. Writing it down is an important action for anything you are taking to that appointment, as is any connections you can make.
Be patient (I know, I know) and let the rheumatologist take the strain.
Your symptoms sound very much like the ones I had last year. Lupus is a disease which can mimic other illnesses. It takes several blood tests to diagnose! I'd had lupus for about 4 years before diagnosis. The pain around the joints and in the small of the back are common as it affects soft tissue, but overwhelming fatigue is the prime effect of lupus, certainly for myself and many sufferers.
The medications work well for me, breaking the joint pains and also clearing up the painful psoriasis on my scalp but it can up to 3 months from starting the meds for it to take full effect.
Dont worry, it is a managable condition and, once you've seen a consultant and got a diagnosis it will should get a lot easier.
Good luck!
I too am waiting for a proper diagnosis, currently probable undifferentiated mixed connective tissue, and see my rheumatologist on the 2 nd of February, my symptoms are joint pain, fatigue, confusion, memory loss, migraine, extreme weight loss, butterfly rash and more that I can't think of at the moment 😞 I am on hydrochlonique, or whatever it's called among other medication which I think is working some days but definitely not others, I have also been suffering with similar pains in my back / kidneys and have had repeated urine test showing protein or infection so have been on and off antibiotics for the last 3 months. I have also over the last few days became itchy all over especially my head, this has happened before but as I wasn't being tested for this I obviously didn't associate it but I now wonder if it is related, I am driving myself mad with it but really don't want to go back to the doctors as I am tired of same reaction, you don't have it or sometimes you don't want lupus as it's really bad so you should be happy with the diagnosis you have? And it's true I don't want lupus and yes it is really bad but that's exactly how I'm feeling 😞 sorry for the rant and hope you get the answers you need x good luck with everything x
What do you do to help the fatigue?
All the symptoms you describe (including the severe joint pain) are indicative of Lupus as well as RA. However, it is not uncommon to have Lupus along with Sjogrens syndrome and Reynauds disease (all autoimmune disorders including Rheumatoid Arthritis). I assume you are a female (and if this turns out to be Lupus, probably between the ages of 20-45........that's when it is most commonly detected in women). There are different blood test for Lupus and RA. Are you excessively tired all the time, do you run fevers off and on, does the joint pain travel from one joint to another, do you have frequent headaches, have you ever had a "butterfly rash" on your face? Do you have swelling and stiffness? How you answer these questions will lead your Dr. more towards the right diagnosis of Lupus or RA. Your Dr. will perform a number of blood test for Lupus, i.e. CBC, ESR, URINALYSIS, KIDNEY AND LIVER FUNCTION TESTS, ANA and DS-DNA. Most people will have a positive ANA if they have an autoimmune disorder, however about 2% will run a negative even if they have a severe case of Lupus. The distinguishing factor is the DS-DNA; in the lab I use in the USA any number over 4 is positive for Lupus.....so if your number comes back a 15 (EVEN IF YOU SHOW A NEGATIVE ANA) and you have many of the symptoms of Lupus..........then you definitely have Lupus. [unfortunately many Dr.'s that are not Rheumatologists do not know that you can have a negative ANA, yet still have Lupus]. The specific blood tests for RA are: ESR, Rheumatoid factor and an ANTI-CCP. If it turns out to be either of these 2 autoimmune disorders and you want immediate relief your Dr. can put you on a steroid and eventually switch you to a steroid sparing medication and/or you may eventually stay on a very low dose. Different people respond well to different meds.....many people with RA do well on HUMIRA, a steroid or another med. Lupus is a little different, until about 2 years ago there was no drug specifically for Lupus, now there is....it is called Benlysta (absurdly expensive in the USA..........MOST PEOPLE CAN NOT AFFORD IT - many of the drug companies in the USA way overcharge for their meds....unfortunately we have no controls over drug prices and many people are getting ripped off by ridiculous overcharges - THIS IS A HUGE PROBLEM IN THE USA). Many people with Lupus respond well to Plaquenil alone (an anti malarial), steroids, Imuran, Cellcept, or Methotrexate. As you can see, there are many different treatments for each for each of the 2 disorders. You need to write down all your problems and all your questions prior to your visit. No one over the internet can give you a diagnosis......ONLY YOUR DR. CAN DO THAT AND ONLY HE/SHE CAN GIVE YOU PROPER TREATMENT.
Hope I have helped a little.
Dr. S in the USA
The pain that you describe is not neccessarily connected with your kidneys. In fact when I had kidney desese I had no pain in my back. Try not to pre guess the diagnosis and keeping a pain diary is a very good thing. Best wishes Eddie
Hi Wiki_pie,
As many of the other members have already suggested, it is a good idea to mention the pain you are experiencing with the consultant when you see them, but it may well have nothing to do with your kidneys. Often kidney damage presents with no pain until the later stages so it could be muscular or maybe an infection.
Good luck with your rheumatology appointment. I hope that it goes well. Please keep us updated with how you get on. If you would like an information pack about lupus and how it is diagnosed you can request or download one from our website at lupusuk.org.uk/contact-us/
Heeey did you find out anything ??
