New here and on pins and needles waiting for a diagnosis
Hello! I'm new to this forum, and new to the idea of lupus. What I am not new to is intermittment periods of feeling completely exhausted, so achy that I can barely walk or get comfortable lying down, terrible insomnia, and skin rashes after being in the sun too long. While I've had the photosensitivity and the periods of insomnia (on and off) for much of my life, the bouts of joint aches and extreme fatigue have only developed in the last 5 years (after having my daughter).
After suffering with these bouts for several years, as they got worse and worse, I finally decided to bring it up with my GP early last summer -- but unfortunately I was not in the middle of a flare-up of symptoms. (My mistake, apparently...)
Anyway, I thought I might have some kind of arthritis and was getting concerned about the amount of Ibuprofen I was taking. But she took one look at my joints and said I didn't have arthritis -- and went on to say that she didn't even need to order an xray to be sure. She told me I was tired because I had a 4 year old. She told me my joints hurt because I had bursitis and suggested that I take glucosamine and other "joint juice" products. She told me I could safely take even MORE ibuprofen. And she told me that I needed to exercise more to combat my lessening flexibility. :?
In short, she blew me off.
But she did agree to run some blood tests and although my ANA was just positive (and the RA was neg) -- she stated on the results that were mailed to me that it was "not the cause of my joint pain." (Ok, so what is the cause of it??) I called to speak more about it with her and she never called me back. After that, I decided we needed to part ways.
Earlier this week, after a very stressful evening, I awoke with the worst rash I've ever had, all over my cheeks and bridge of my nose. It burned, sometimes itched and was downright PAINFUL. It was red and puffy and almost purple. I treated it with icepacks it was so hot. So after a day went by with no lessening of the intensity of this ghastly thing, I went to see my new GP (who also has advanced training in dermatology -- a happy coincidence I thought) who diagnosed a malar rash, ruled out rosacea, put me on prednisone, and sent me off to the lab for a rash of blood tests. (I gave her a copy of the weakly positive ANA I'd gotten from my previous doc.)
I know she's running an ANA, a sed rate and a complete blood count with differentials, an RA test, and a bunch of others that I couldn't decode. However, she didn't order a urinalysis and I'm wondering if that was a mistake after reading many of the posts here. She was very clear that she wanted all the blood labs before I started the prednisone, so that nothing would be masked by it -- so wouldn't I have needed a urinalysis before as well?
I'm so worried that I'm going to be told (more or less) that this is all in my head again...also she seems very predisposed to the idea that this was caused by an allergic reaction to something I ate. I really KNOW that it was not an allergic reaction. I've had plenty of them in the past, and they were never like this. In the past when I've reacted to a soap or face cream the rash has always cleared after a night's sleep. And it's never been so bad. And foods that I'm allergic to just make my mouth itch or give me bumps around my mouth.
Sorry if this is a jumble or hard to follow...I'm so spaced out on this prednisone...I feel like I'm in a fog.
If anyone has advice or answers about the urinalysis question and on what a CMP blood test might be, I'd really appreciate it.
Thanks for reading.
Hi, Peony. A lot of us have had encounters with doctors who were bad, or simply indifferent, so we certainly relate to your frustration with trying to find a doctor to take your symptoms seriously. It sounds like your doctor is doing a pretty thorough workup with the tests she ordered. A CMP is a comprehensive metabolic panel - it is a group of 14 different tests that gives your doctor a lot of information about your liver and kidney function, your blood sugar levels, electrolyte balances, and so on. Since your doctor ordered these tests, a urinalysis is not that important, since these blood tests give information about your kidney function just like a urinalysis would. I hope you will get the results of your tests soon - I know being in limbo is hard.
Thanks so much for the info on the CMP. I feel much better.
I see her again next week so with luck I will know then what my diagnosis is.
Until them I'm trying hard to maintain a wait and see attitude. (Tough at times, but I'm working on it!!)
Welcome to the Forum!
I'm sorry to hear that you have been going through such a rough time! Believe me, I understand exactly what you have been going through with regard to incompetent doctors! :x
I also understand your frustration with the malar rash because I had a similar problem. When I appeared in Hospital for the first time with the malar rash, I had my bloods sent off for an A.N.F. (A.N.A. in the U.S.A.), among many other things, but it came out negative. My Specialist Physician decided that it was therefore not Lupus. However, the rash would not go away and I continued to get sicker and sicker. My Neurologist thought that my Anti-Epileptic Drug was causing the rash, so he spoke to my Specialist Physician and they changed my Anti-Epileptic Drug to Epilim (Depakene in the U.S.A., I think and Convulex in the U.K.). However, the malar rash would not go away and was actually getting worse! My Specialist Physician still maintained that it was the Lamictin (Lamictal in the U.S.A. and U.K.) that was causing my rash. I knew that it wasn't the Lamictin though because everytime this rash appeared, I got extremely ill and would develop terrible bladder and kidney problems; something that the Lamictin could never do. My mother phoned my Neurologist and he said to give it ten days and if the rash hadn't cleared up by then, it was not the Lamictin. Guess what? The rash did not clear up. I FINALLY got an appointment with a Rheumatologist who diagnosed me with Lupus. My Rheumatologist told me that I had one of the best examples of a malar rash that he had ever seen!
It was a really difficult time! :x
It sounds like your new G.P. is doing a MUCH better job than your old one and I hope that you get some results soon! Please let us know how they come out and how you are doing!
Well, it looks like I will need to wait longer still. I saw my dr today for a followup and she told me that she was referring me to a rheumatologist. Unfortunately the first available appt he has isn't until early March. My ANA came back elevated again -- but that was the only test that came back abmornal.
I read an article today by some big dr (a rheumatologist, I think) at the Cleveland Clinic who argued that many cases of suspected Lupus are actually Fibromyalgia. Especially in cases where the only abnormal lab result is an elevated ANA. I hadn't even thought of Fibro... I think my former GP screened me for that and I didn't react to her poking any of the Fibro tender spots. Also is it common to have a malar rash with Fibro??
As maddening as it is to continue to not really know what (if anything) is wrong with me, at least this new doc didn't write me off as a head case. I have to say that that was my biggest fear after my last encounter with my former GP.
I'm glad that you are getting somewhere with your new G.P. and that she has referred you to a Rheumatologist! It is a pity that you have to wait so long though! I was aggravated just having to wait a month to see my Rheumatologist for the first time!
A lot of people can have Lupus and Fibromyalgia (I have both). They do share some similar symptoms, such as debilitating fatigue, muscle aches, ligament aches, headaches, irritability, poor circulation, swelling of the hands and feet, forgetfulness, poor concentration, etc. Fibromyalgia can also cause Irritable Bowel Syndrome (I.B.S.) and Irritable Bladder/Overactive Bladder Syndrome.
However, if you did not find the "Fibromyalgia points" painful when they were prodded, it is probably unlikely that you have Fibromyalgia.
I have never heard of someone getting a malar rash with Fibromyalgia though?! :?
I am annoyed about my malar rash at the moment because I went to see my Dermatologist, but I didn't have a full malar rash at the time. However, I did have a rash which looked fairly similar. My Dermatologist took a look and said that my rash was most likely caused by me over-exfoliating my face. She told me to stop everything, except my Acne and Keratosis Pilaris gel, for a week and to see what happens. That was two days ago and my rash has disappeared now. However, this "over-exfoliation" rash came without me being in the sun, which I found unusual at the time, so I don't think that that particular rash is connected with my Lupus. So, I went into the sun for five minutes without sunscreen today, just to see, and the malar rash appeared, as well as a similar rash on my exposed arms! I think that we are dealing with two rashes here which look very similar because I definitely do not exfoliate my arms and over-exfoliation does not make people photosensitive! My Dermatologist told me that she couldn't say anything about the "sun rash" yet (when I saw her two days ago), all that she could tell me was what the current rash on my face was. She told me that if I came out with anything else "interesting", she would very much like to see it.
This is SO annoying! :x
Sorry you are having to wait so long for the rheumatologist appointment. unfortunately, rheumatology is one of the smallest subspecialties in medicine, so it can be hard to find one, and new patients often have to wait to get in. I have to drive an hour to see my rheumatologist because his office is two counties away, but he's the closest of my specialty physicians - the others are two hours away in another state.
A positive ANA by itself doesn't mean that you have lupus, because a positive ANA occurs in many people who have other autoimmune diseases like RA, in people who have blood relatives with autoimmune diseases, people with an acute infection or viral disorder like mono, and people taking certain medicines for high nlood pressure or heart disease. Plus about 5% of the population will test positive with no underlying disease at all. So your doctor has to look at your lab tests, and any symptoms you are having, to see if they form a pattern that suggests lupus. Unfortunately, many of the symptoms common to lupus patients - extreme fatigue, low-grade fever, muscle aches, sleep problems - are also common in many other illnesses, so they are not part of the diagnostic criteria for lupus. A malar rash and a positive ANA would satisfy two of the criteria - generally, four are necessary in order to meet the ACR criteria for lupus. So even when you see the rheumatologist, it might take a while to reach a diagnosis. The important thing is your doctor is taking you seriously, and working to find you an answer.
That's awful that your specialists are so far away! Do you have to drive yourself both there and back?
Ni, I don't drive myself any distances because of my neurological problems - my sister usually drives and goes shopping while I'm at the doctor, and I call her on the cell phone when I'm finished up.
Are there few doctors where you live, or is it just certain specialists?