View Full Version : so frustrated
04-16-2014, 05:35 AM
i had a biopsy done of my rash however on the day it wasn't flaring too badly. The results have shown seborrhoeic dermatitis which isn't what i have! my rash flares when my joint pains are at their worse. I'm devastated i thought this would be the key to getting early treatment and starting to move forward with Lupus but it has left me feeling lower than i ever have been before. How ill do i have to get for a diagnosis? My blood work is so far only showing a borderline c4 and low lymphocyte count, everything else normal. Symptoms- fatigue, migrating joint pain, malaise, rashes, muscle pain, tingling, twitching, neuropathy sensations, depression, anxiety, nausea. It's so obvious i have early lupus i am being made to feel like a complete hypochondriac
04-17-2014, 02:47 PM
I have never had a formal diagnosis, but I was informally diagnosed by a Dr. many years ago. What I am trying to say is that some of us never get formally diagnosed, but are diagnosed informally by our history, symptoms, etc.
04-17-2014, 04:30 PM
Tests never occur on flare days, test results never show conclusive results. It takes months and years to establish the pattern that gives you a history. Rest easy and please give yourself a chance to adjust to a new lifestyle..
Mikey you can do this. Take things one day at a time, get plenty of rest, take walks for exercise. Do what you can to feel healthy.
Above all have faith in yourself that you can be strong and carry through
04-18-2014, 02:51 PM
It's so frustrating as I think I have NPSLE as well and CNS involvement with my neuropathy. One of my first symptoms was overwhelming anxiety leading to panic attacks and I knew something was not right with me straight away. The malar rash comes and goes so quickly no one seems to believe me at all now. I just don't see how 7 months after symptoms bloods are completely normal. I don't know where to go from here, everyone seems to have closed the book on lupus when it's SO blatant that is my problem. I'm sick of feeling crap having no treatment and being made to feel like a lunatic
04-19-2014, 06:18 AM
What type of doctor are you seeing? Maybe you need to see a different one.
04-19-2014, 09:06 AM
I was about to suggest the same thing! Perhaps it is time for you to see a rheumatologist and make sure that it is one who is familiar with Lupus and its treatments. Also make sure that he/she understands that nature of the disease (meaning - symptoms come and go; lab results change from normal to abnormal to normal to abnormal to normal etc.); one who knows that labs must be run periodically over a course of time in order to find out if certain results are present and what are your symptoms when they are present as compared to when they are not present.
Unfortunately, a good rheumatologist who is thorough will do these things and it may take a year or more before a diagnosis is made (this time line is quite normal because of the disease changes so much in each of us). Also, there are many, as Nonna mentioned, who never get an official diagnosis, but whose doctors are intelligent and caring enough that they treat the symptoms anyway to give the patient some relief and some ability to work towards a new normalcy.
Please know that anxiety and depression are also common symptoms of Lupus (and other auto-immune disorders) so a good Rheumy should consider those symptoms when trying to find an answer to your problems and/or trying to determine if your issue is, indeed, lupus.
I wish you the very best!
Peace and Blessings
04-19-2014, 12:04 PM
I saw a Rheumatologist privately after hassling my GP for a referral and he explained that my symptoms and bloodwork sound more suggestive of Post Viral Fatigue or CFS syndrome than SLE but referred me to a dermatologist to assess the rash i had. My only abnormal blood work so far has been a slightly low lymph count and one low C4 but everything else has been normal and everything's perfect in my most recent bloods. My ESRs have been 2 and 5 even when i've been in terrible pain with joints and muscles. I have had ANA done 3 times since November and all have been negative as well as a negative ENA panel.
I really hoped that the biopsy of my facial rash would help me get a diagnosis and push things through but he said that it wasn't consistent with SLE and was more suggestive of Seborrheic Dermatitis. I get a malar flush that comes and goes very quickly and is especially bad in heat or when i drink alcohol. I am not in constant pain but i'm constantly fatigued and feeling crappy (malaise). My first symptom was overwhelming anxiety and panic attacks and from there things developed into further symptoms migrating athralgia's, myalgia, nausea, vomiting, dizziness, stinging pains, muscle weakness, brain fog, raindrop sensations, strange spells of breathlessness, head pains, pins and needles, chest pain, i even broke out in hives on my arm after being out in the sun one day.
I just don't know where to go from here. I am completely CONVINCED i have Lupus and not being diagnosed is a lot more depressing than actually having a diagnosis, treatment etc in place. I'm in no mans land at the minute :(
04-19-2014, 01:04 PM
Just remember a lot of us live and have lived inthat no-man's land for a long time. I had lupus for 30 years before I got a diagnosis. Keep on trucking, believe me I know it's hard. I am there too, especially today.
04-21-2014, 01:06 PM
it's so frustrating as although the biopsy showed seborrheic dermatitis the rash takes a malar shape when it flushes and perfectly matches up to other photos i have seen of SLE rashes. My illness began after i had double root canal surgery and i am considering having the teeth extracted by a dentist, i have read several articles online about root canals causing illness's including Lupus in certain individuals who have seen improvements upon having the teeth removed. It might be a long shot but i'm willing to try anything at the minute.
i'm trying to cut gluten out my diet too but i just don't understand how they can possibly say this isn't Lupus. Is it possible to have the symptoms without the bloodwork and organs being affected? i'm guessing that this will come as time goes on. Such a frustrating time at the moment. I have read several posts about people having bloodwork come back okay early in the disease but even then it seemed there'd be something more abnormal than mine such as an elevated SED rate etc. It just seems too much of a coincidence that i was in perfect health before the root canals and began feeling ill one week after i had them done, i remember the moment i felt ill perfectly and it hasn't improved since.
04-21-2014, 05:36 PM
Mikey I can really empathize with you. The Drs. made me feel like a lunatic and a hypochondriac at first too. That is until I found a compassionate and caring Dr. Too bad he retired some years ago. He was the best! I agree that you should start looking for a new Dr., preferably a compassionate and caring rheumatologist.
04-22-2014, 02:49 PM
there are some photos of my rash when it flares up. it just seems so obvious that Lupus is my problem, not having any kind of diagnosis is incredibly frustrating!
05-04-2014, 09:23 AM
It is good that you are educating yourself about Lupus, but you cannot force your doctors to give you a diagnosis. As I mentioned in an earlier post, perhaps you need to find different doctors.
As we are not doctors, we cannot give you an answer as to weather your rashes are due to Lupus or not. Tests must be conducted in order to make that determination.
Please consider following some of the advice that we have provided here in order to lessen your frustrations and to possibly get some answers!
I wish you the very best.
Peace and Blessings
05-04-2014, 08:55 PM
Hello Mike...I read a few of your posts and thought maybe my words could uplift you…help you a bit to find a way to cope.
When we feel lost and feel the only answer to stop the pain of feeling lost is to stop living, taking our own life is there because we do not have the experience or the coping skills with this or any new rising issue or situation that is plaguing us emotionally or physically. So, we think this is the only way out...but it isn't. That is when we have to build a wall of support, of people around us to hold us when we feel we can't stand up....and not build a wall to leave people out…to be alone. We need people…so reach out to those you trust. Reach out to me and anyone here..okay.
I have felt I could no longer cope many, many times. I called my body a box that houses my spirit and felt I could just get rid of the box. Why not I thought? Listen to your spirit, your heart…it wants to live. And when you get a proper diagnose or even just the right drugs you will find you’ll be okay and life is worth living and a life that you can enjoy.
I want to ask, though not diagnosed are they treating your symptoms? That is foremost regardless of the diagnosis or not. Perhaps find a new DR that would be open to try the SLE treatment drugs, i.e. Plaquenil which is the first line of defense to help with your malaise, fatigue, joint pain and facial rash. It can take 5 weeks to many months to find some relief. For me it was 5 weeks. If they work, how lovely would that be...
I would suggest you keep a journal of your daily physical and mental feelings and also of your physical activity, stress factors and the foods you eat to see what your triggers are. Then you will be better to manage it if it is Lupus…but too again with any disease those things are imperative. And also the journal may help with a proper diagnose for your DR to look at.
Me…I live a paced life now. I look at Lupus as it is something I share my life with and not something that has taken my life away. If I live a paced life it keeps it tame, but I do go crazy…yes, even at 52 and I’ll have at life, dance..work too hard in the yard, hang out in the sun…ride horse but I know Lupus will probably come and collect. So sometimes the fun outweighs the pain, the flare Lupus will bring. I know the cost. Knowing that it helps me emotionally when it takes me down...I rest, eat good...stay inside...read, watch TV...do light things and feel gratitude to the comfy of my bed, the cool sheets…the warmth of my sock monkey hat, the coolness of ice cubes and the switch that I can turn the lights off… until it gives me my body back.
I had Lupus, unknowingly all my life. I never knew what it was...I started to get sick more often when I was 26 and wasn't diagnosed until I was 43. At first I had hives, face rash would come and go…fatigue…felt like I was blah. Nose ulcers. What brought it to the surface, loud and blaring is when I had back surgery when I was 38. It was relentless. I was diagnosed with depression, arthritis, allergic reaction to an unknown things. I was told I did not eat enough protein and stop being a vegetarian. I was tested for everything but Lupus. It wasn't until my third back surgery...Lupus took me down. I couldn't walk. I had to put my hands in my hoodie pockets because I could not let my arms dangle because my joints hurt so much. I ask my late husband was he poisoning me, he didn't laugh. I wondered if it was my house, a gas leak. Tested...no. I hought they left gauze or a surgical tool in me??*&^%$#@!
When I was in a severe flare and the face rash never left I Googled ‘Joint pain face rash’…Lupus came up. I made an appointment with my DR. I said I think I have Lupus. He did the anti-ds-DNA test. Though it is not a SLE specific test per se, if it pops +, and you have the other symptoms…it is more than likely Lupus. Came back positive and with all my other symptoms I was diagnosed. After I was diagnosed I could see where it was present in my life and the triggers. Stress, sun…foods. Where it showed up…when I moved, when I got married, when I used a tanning bed…when I mixed my own dirt. Surgeries...even dental cleanings.
It is in fact possible to have the symptoms and your blood work will always come back negative. Blood work isn’t a sole indication of the activity of the disease, but that doesn’t mean it can’t be a tool. I could be in a moderate to severe flare and everything comes back fine or borderline. I don’t think I ever popped positive with the ANA test.
What I would be concern with, Mike is that they treat the symptoms regardless of not having a diagnosis. Your goal should be to feel well as you can and not let not receiving a diagnosis affect your spirit.
My triggers: Florescent lights…gawd avoid Walmart. I have been in one three times in my life and each time I came out sick. So, if you go to Walmart treat it like a day at the beach…cover with SPF, sunglasses and clothes.…. computer screen (I wear sunglasses) , Roasted soy beans, peanuts, preservatives, processed foods, sugar, caffeine in high doses…like a cup of coffee, Peat Moss, house cleaners, surgeries as I have had 5 major surgeries. Those affect my brain fog big time and I go into a flare where I feel like I was hit by a Mac truck, I have the flu and drank a 1/5 of booze the night before. Peat moss, stress and cleaners ignites nose and mouth ulcers in me.
So, I avoid those things for the most part. If they are in my life it is because I am aware of it.…but sugar is hard to avoid because I do like my cookies and a Hershey’s so I do indulge but not heavily. I do use cleaners and Peat Moss but I cover my face.
Things I do to help with the body pain. Take a nice warm shower and rinse off in cold water. I take an OTC pain pill, like Tylenol…I can’t do ibuprofen as I have GERD or I take a Tramadol or Vicodin. Helps me to sleep without pain..and I am able to unfold more easily. It is really important to get to sleep. It is one of the big things that can tame Lupus for me. I just order Kava tea, should be here this week to help me to sleep deeper. I don't want to use prescription sleep aids anymore. Hope this works..
I eat fresh for the most part. Nothing in a colorful wrapper..just anything in a colorful natural skin as in fruits and vegetable. I rarely drink alcohol. I very rarely eat anything from a box or can…processed or frozen. I have never been into fast food..but I do have a friend who loves it. So, I find myself in a restaurant that only has it. Like Carl’s Jr…so I eat chicken strips, fries and a water. I do feel icky when I wake up the next morning…but I throw caution to the wind because we have a good time and too, he will eat at my fresh places…I like fresh Pho Ga’. No rice noodles..I like it with zucchini threads. They are so many things out there that modifying our life is easy now…
Try to learn to life with your symptoms and not let them consume you….you will get a diagnosis, regardless if it is SLE and with the proper drugs, lifestyle you will be able to live a good, fun, fulfilled life. And achieve your goals.
Though Lupus is the major shareholder in my body…it comes in second to my spirit.
Having a disease gives us an opportunity to learn about ourselves...our bodies, our spirit…and will lead us to live a compassionate, passionate life. I know it is hard to think in those terms now…but you will find it will tame most diseases, to distress yourself and get some Zzzzzzs..
Keep looking for your wellness, Mike...
05-05-2014, 06:27 AM
I also had lots of problems after a root canal. But a bridge was worse and caused me to have two extra teeth removed thanks to them being sawed on (or whatever you call the filing of them down) by the dentist. Now I am looking into implants and that scares me too. It seems like any time I have work done on my teeth, it just opens up a can of worms and causes more problems. I just want to have a full set of teeth, but dental work has not helped me to have a full set. I don't think my lupus came on though because of dental work. I believe it was there from the time I was in my teens or 20's. My teen years were really stressful as I was trying to be "perfect" and get straight A's in high school. I came pretty close graduating in the top 2% in my high school class, but still did not reach my goal. Also tried to look "perfect". Don't know where this "perfectionism" came from but it brought on a lot of stress and I believe my lupus. Hang in there. Lupus is not the end of the world. I am 64 and lupus hasn't defeated me yet. I am still hanging on and have had a pretty good life so far. A lot has to do with attitude. Yes, lupus has been hard on my body and soul and particularly frustrating, but when I think of the alternative, I just keep on trucking. Life is worth living, believe me. I believe in God, and he gives me strength everyday. Take things day by day, it really helps.
05-12-2014, 05:55 PM
as my tests have all returned normal and my skin biopsy wasn't useful in showing lupus i have decided to pursue all avenues available to me and i'm seeking consultation with a biological dentist. i've been ill ever since the root canals and it's too much of a coincidence. i know it's a long shot but it seems too strange that all this has happened since they were done. i contacted the dentist and he sent me a symptoms list which he wants me to rate from 1-5 on severity in the last 6 months.
nausea, constipation, diorreah, bloating, food cravings, ear infections, tinnitus, confusion, poor concentration, dizziness, slurred speech, learning difficulties,anxiety, depression, mood swings, rashes or dry skin, headaches, faintness, dizziness, fatigue, apathy, lethargy, joint pain, muscle pain, tingling, tremor, muscle weakness, sinus problems.
I have experienced all these symptoms over the past 6 months and i'm hoping he can help me.
I thought i had developed ulcers inside my mouth earlier but upon examination they look more like i've bitten the inside of my cheek whilst asleep as opposed to ulcers. there was one occasion i got an itchy arm rash after sun exposure but this was the first time i'd been out in the sun for months and i think i was sunburnt. the rheumatologist noted i have redness under my fingernails although i've always had this, it appears to be worse now.
i have no idea where to go or what to do. Everyone thinks i'm a hypochondriac and i don't know how much longer i can go on like this without a diagnosis, treatment or any help.
05-13-2014, 01:13 AM
I know it can be long frustrating road :(please keep us informed
05-14-2014, 01:57 PM
Keep looking for your wellness even when you feel defeated. A good DR is a hard find. If you mention what area you live in, maybe someone here can give you a referral to their DR that they like.
Lupus is an accumulative disease..not all symptoms at once so it is imperative to maintain a journal of your symptoms. They should treat your symptoms regardless if them name what ails you. Humm. I would press them and do not ever doubt yourself, your symptoms or minimize them. Sometimes other then DRs, us here and trusted friends and family it is best not to mention your symptoms. Sometimes we don't get the response we need to uplift us and can spiral us into a flare, depression, worsening symptoms. Stay true to yourself and know, you know within yourself you are not well.
When I had a dental implant, it took two years for it to stop aching daily..now it aches around the implant when I flare. Inflammation. Has your dentist performed another x-ray to ensure they indeed removed the root? Check all possibilities out.
Keep looking for your wellness, Mikey..
05-15-2014, 07:55 PM
i have all of your symptoms and more, most days i feel like this, it is a tough disease and sometimes not a fair one
05-16-2014, 09:03 AM
Your response filled with uplifiting words was beautiful. Thank you so much for sharing it with Mikey and with us!
Moonbeam; I loved your response also. Thank you
Peace and Blessings
05-21-2014, 07:14 AM
i went out in the sun the other day for hours and was absolutely fine. i'm starting to think i may not have lupus for the first time in a long while and that it could be the toxic dental work causing my issues however i know my symptoms still make lupus a possibility despite my normal bloodwork. I see the dental specialist tomorrow so hopefully he will give me further insight into what is causing my ill health
05-24-2014, 08:19 AM
just looked through old pictures and realised how bad and blatant my malar rash is, it's not seborrheic dermatitis at all. the dermatologist didn't use a flourescent stain test on my biopsy and i got a letter from the rheumatologist saying he was completely confident i did not have anything autoimmune going on due to my completely negative bloods and inflammation markers. i got a random nose bleed earlier which is another symptom and my joints are agony, the pain moves every second from joint to joint then stops for days or weeks. i really don't know what to do or what's going on :( i think i'm trying to pretend i don't have lupus when it's so obvious that i do
05-24-2014, 08:25 PM
Me and the sun...most exposures causes some sort of symptom to surface within me, on me to being in a complete flare but, always a but in life it seems. With Lupus it doesn't matter if the good news is first or last with the word but...Buuuutttt even when in the sun it doesn't aggravate Lupus either at times. It is like a bitter sweet sorry, Mikey101.
As I've learned about Lupus over the past 7 years...I don't take chances with the sun anymore unless I am willingly to forfeit some of my body for a few days, a few weeks..a few months. Too risky. Cover and protect.
Keep looking for your wellness.
05-25-2014, 07:52 AM
the thing is i've only had a bad reaction to the sun once and i was out far too long and hadn't been out in it for many months. It caused an outbreak of eczema that was itchy for about 30 minutes and then subsided. since then i've been out about 3 or 4 times and nothing at all has happened. all my bloodwork is completely normal, no inflammation markers, no antibodies but the symptoms persist. I'm getting my root canals extracted by a biological dentist as i've been ill ever since they were done and my health was perfect beforehand.
05-25-2014, 02:49 PM
I find that sometimes I can go out in the sun and feel fine afterwards. Othertimes, I feel horrible after going out in the sun, and my discoid lupus flares something awful. Lupus is a very unpredictable disease. My bloodwork is perfect, but I know I have it and have had it for a long, long time. I don't care what the bloodwork says when it comes to me.
05-25-2014, 03:27 PM
when you say your bloodworks fine what do you mean? ANA negative? no antibodies or inflammatory markers?
Deb in the Garden
07-15-2014, 07:05 PM
I realize this thread is a bit dated but thought I would reply in case you are still seeking info.
You asked about "normal bloodwork". It took 3 months or so for me to get my diagnosis and I would still be without it if I hadn't seen a second rheumatologist as has been suggested in this thread. My sed rate more than doubled in a few months time and I had a lot of SLE symptoms...joint pain, profound fatigue, raynaud's, mouth ulcers, nasal ulcers, anemia despite iron supplements and an intense rash across my cheeks and eyes.
The first rheumatologist I saw was dismissive because my ANA was negative. He didn't have any answers for my symptoms but basically told me to go home, I was fine. My primary pushed me to get a second opinion and thank goodness I did. As difficult as it was to hear "this is Lupus. You have Lupus" it is a starting point. I'm now new to plaquenil and am hopeful that it will provide relief over the coming months.
Since receiving my diagnosis, my symptoms have increased. I now get fevers. If I hadn't persisted and gotten the second opinion, I would be mystified by this latest development.
Good luck to you and I hope you get some answers.