I need help. I've been ill for over 7 years. Fevers just about every day.....and the list goes on. I was told suspected Lupus but after a recent blood work check.....I was diagnosed with Fibro. I have more than Fibro entales & my doctor doesn't seem to understand what I'm going through. He has not even suggested seeing a Rhumatologiat, either. I have been diagnosed with Osteoarthritis as well. I recently found out that I have high Lymphocytes & high Glucose. My Creatine is too low (I don't even know what that is??). And my Cholesterol is sky high. I have high blood pressure & rapid heart beat. I have Keratitis. I have Scoliosis. I have numbness in my hands, legs, & feet. I recently started having severe burning pain in some of my fingers. I'm in pain 24 hours a day. I feel like I have the flu every single day wi my fevers. I get sick constantly and leaving he house is difficult. I'm always on antibiotics for ear infections, sinus infections, and etc. I can't go in the sun. The last time I was in the sun, I passed out.....I couldn't breathe & lost my eyesight for a few minutes. I also get rashes wherever the sun hits on my body. I can't sleep. I'm sad all the time. I think. Think. Think all day and night. I need a diagnosis so I can find treatment to get well. Help me Jesus. Please. The list, symptoms, and frustration goes on and on.
Can someone give me some advice?? Or something. Help!!
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AngelaMew
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I have the same question as { PMRpro } ..... What isn't true??
From the research I've done thus far, I too, have read that fevers do suggest inflammation & Fibro has nothing to do with fevers, just as PMRpro has noted in the above. Please advise.
By the way, Thank You for responding to my post.....I greatly appreciate it!! I'm still learning about Lupus & what that horrible disease entails. ☹️
In the meantime, have yourself a Wonderful Day, full of Love & tons of Laughter!! 😊
THANK YOU SO VERY MUCH for your response / information!! I didn't know that fevers suggest inflammation until I read your comment & did some research. WoW.....
I wish you were a GP!! LoL!!
May I ask.....Do you know if a GP is capable of diagnosing Lupus in general?? Or, can a Lupus diagnosis only be made from a Rheumatologist?? I'm sorry.....there's so much to learn.
As Lupus is a hard disease to diagnose.....Lupus is also mind boggling with no specifics, either. It's invisible in test results as well as to the naked eye. Frustrating to say the least!!
For me.....it's killing me that people, especially some Doctors, do NOT understand. It's almost as if we are exaggerating or lying about about our symptoms & the way it affects our lives. In other people & Doctors eyes, they look at us like.....
~* " There's no darn way that someone can suffer the MANY different health matters that we express. We look okay on the outside.....how can we be feeling the way we do. And, is it even possible for one human being to have Lupus,mFibro, Diabetes, High Blood Pressure, Gerd Disease, Scoliosis, Osteoarthritis, Hair Loss, Depression, High Cholesterol, High Lymphocytes, Low Creatine, Headaches, Burning Sensation in Fingers & toes, Pain from head to toe, Constant Infections & always on Antibiotics, exhaustion from simple everyday tasks, Sheez.....exhaustion from just taking a shower!!, AND ON & ON!! Oh, let's I can't forget the Sensitivity to the Sun, Heat, & the Cold. And, miscarriages as well. *~
Am I right?? LoL. I don't mean to laugh by any means but come on.....it does sound like we are all liars!!
The sad thing is.....IT IS ALL TRUE.
Oh boy.....it was exhausting just typing that out!! Hee Hee!!
Again PMRpro, Tgank You so very, very much for responding to my post. It truly means A LOT to me. It does.
In the meantime, please have yourself a Fabulous Day, full of Love & lots of Laughter!!
A GP might be able to have a deep suspicion - but few would have the knowledge to be sure nor access to the sort of tests required. They wouldn't in Europe at least - referral to a rheumatologist would be required.
And yes - most doctors really don't have a clue how any of our autoimmune disorders impact us, even when they are supposedly well managed. I've been discussing something similar with a medic colleague - how to get through to GPs who don't read journals and latest research. And then there are the know-it-all rheumies who think they know better than the patient...
Definitely find another doctor stand your ground and demand a referral to see a rheumatologist. I went through 4 doctors the last 3 yrs til I found a good one and I was diagnosed 3 wks ago with Lupus. I have been told for yrs by family and friends they thought I had Lupus and I always blew it off. Then, the last 3 yrs I have been so sick and this last year has been the absolute worst and I’m a single mom of 4 always on the go and I have been literally bed ridden. I finally found me a great doctor and Lupus is just one problem I have been diagnosed with. It’s been a roller coaster, but I know in time things will get better. You just have to be firm and stand your ground. Good Luck. Stay Positive. You will find a Doctor that will listen.
WoW!! You've been through terror, huh?? I'm sorry to hear this. But.....I am very Happy that you've finally found a good Doctor that is helping you. What a relief. Omg!!
Yes, I know the feeling. I'm sick all the time & if it weren't for my 6 Babies {My 2 Baby Sisters Children, which whom I help to raise}.....I wouldn't have the Strength to fight on. *MY 6 BABIES ARE MY EVERYTHING.....they are MY WHOLE ENTIRE WORLD!!*
I always tell My 2 Baby Sisters that " Although they are your Children.....THEY ARE MY BABIES!! " LoL!!
" I am & will For~Always be Truly Grateful to My 2 Baby Sisters, for allowing me the *6 GREATEST BLESSINGS of MY LIFE.....MY 6 PRECIOUS BABIES. " 🙏🏻💜😇💜🙏🏻
Sorry.....I just had to express that!! Hee Hee!!
Okay well, my current GP is a great Doctor, don't get me wrong. But.....he's very old school I guess. I don't know. He doesn't know much about Lupus & I'm assuming that he doesn't research much on the Internet about new findings or more detailed information regarding the newer diseases & Etc.
Basically, I think I kind of knew more about Lupus than he does. Sigh.....
Per my Doctor.....there's a test that determines if someone has Lupus out there. [?????] He didn't tell me which blood test that was, though. Anyway, he ordered some blood work for me which came out negative for Lupus. So basically, my ONE {1} blood work test was all he needed to determine that I don't have Lupus at all. I was mind boggled, to say the least. I was also very, very frustrated. So frustrated that I had to hold back my tears.
I've been seeing my Doctor since 2012 & from day 1.....He Pre-Diagnosed me with Suspected Lupus & Rheumatoid Arthritis.
At the beginning, I only went to see him here & there until recently. Now, I see him almost once per week. I guess I was scared & honestly, I thought that my being ill all the time & the pain that I endured every single day, was all in my head because....." No one in this world can have as many problems & pain that I feel on a daily basis!! I'm just losing my mind & I must be imagining the horror that I suffer everyday. "
I tried really hard talking to myself & saying....." You're not sick, Angie!! It's all in your head & get over it!! "
Yah.....that did NOT work!! LoL!!
My thermometer can't lie, as well. I have fevers everyday & on my really bad days, it's hard to control.
So, I just told myself that I have Suspected Lupus & because there is no full cure.....I guess I'll just deal with it the best I can until I fly to Heaven.
Since then, my health has been getting worse & worse. More symptoms & new problems. I wasn't getting better & the pain was way to much for me to endure any longer. I knew that I had to go back to my GP & get help immediately.
So, last year.....I went back to my GP & here I am.
I've taken only 1 blood work test that he ordered & 1 set of X-rays, thus far. My doctor knows of my many, many symptoms & he is aware that I my daily pain level is killing My Soul. Well.....I think he's aware of all of that. ????? I don't know anymore. One thing for sure is.....I express all I go through & feel every week when I see him. Not sure if he's really listening because apparently, my 1 & only set of blood work doesn't show Lupus or Rheumatoid Arthritis. So, in his eyes.....I'm fine & as he tells me to my face every visit.....
" Angie, you're feeling sick because of daily stress & because I smoke cigarettes. If you learn to relax, not stressing & quit smoking, you'd be 100%!! "
I know cigarettes are bad, don't get me wrong. It is.
I feel like I'm going to burst every single time he tells me that!! I am losing it!!
He has so so many patients & sadly, I don't think he has enough time to be detailed about most of his Patients. His office is still running with frustrated patients from day to around 9 or 10 PM Monday through Friday & some Saturday's.
That's another really frustrating thing.....I normally wait in the waiting room or hallway with many other sick patients for around.....3-4 hours before being seen by my doctor. It's like this for all of his patients & believe me.....some of them voice their frustrations out loud & storm out of the office. Sigh.....
I get sick so easily. I catch everyone's cold & germs so fast that sometimes, being around human beings is difficult. In the back of my head, I'm always worried that my week or weeks ahead will be horrible because I always get sick with infections or whatever thereafter.
I'm having concentration issues as you can see. LoL. I'm going here and there, typing to you.....Please forgive me.
Anyway.....my Bloodwork showed high high Glucose, high high Cholesterol, high high Lymphcytes {spelling??}, & LOW Creatine. I was kind of borderline high in the numbers for other things but not serious. I also take urine tests in his office often & I always have some blood in my Urine, as well. Always!! At the beginning, he kept treating it as a slight UTI but.....I had no pain or symptoms of a UTI. And, the blood was constant but not a lot like a UTI in the tests. He ended up just stating to me something about Creatine & Kidneys. Or something like that.
But, a couple years ago, I had too much Creatine showing on my Urine tests. Now, my Bloodwork shows too LOW.
My X-rays confirmed kinda bad Osteoarthritis & regular Arthritis in my hands, I think. My joints are painful & come out of the sockets here and there. A couple of my fingers are beginning to get crooked. It's not pretty. LoL. And, something like I have joint damage. He said my tests weren't good but weren't bad to the point where I need immediate surgery yet. {knock on wood} My Scoliosos has to be watched because my right hip is becoming way higher than the left because of the curvature of my spine.
I know that the next bloodwork set of X-rays I take will be completely different as that ones I took 2 months ago. My health doesn't make sense. Things go up and down. Symptoms come & stay then goes then comes back worse. Some days I feel like I can endure enough to smile & other days I wanna hit my head against the wall.
I take tons of medicines too. High blood pressure, heart medicine, herd medicine. Prednisone, Always on different Antibiotics, sinus medicines, 2 different Inhalers, pain medicine, ear drops, eye drops, Motrin for fevers, ointments for rashes here and there on my body & loss of hair. For some reason, whenever I have bad days or weeks, I lost chunks handfuls of my hair. When I start to get better, my hair starts growing back thoug. Thank goodness. My eyelashes fall out a lot as well as I have no eye brows!! LoL!! Also, my most recent sores in my nose that he gave me an ointment used for Staff Infection.
I was recently diagnosed with the Fibro so now I take 2 different kinds or dosages of Llllll.
At this moment, I feel defeated. I put all my Hopes & Trust in my GP & I'm not getting better. He listens but doesn't. He cares but.....I just don't know. And, I'm really, really afraid to find another doctor, go through all the things again to only get the same answers as my current GP or.....different answers with MORE diagnoses to add to my already long list of health problems. Do you understand how I feel?? I'm asking because.....HONESTLY, SOMETIMES, I DONT EVEN UNDERSTAND MYSELF OR ANYTHING FOR THAT MATTER, ANYMORE.
Crazy is me. Ha Ha.Oh, brain fogs are a frequent in my life, too. It just makes us feel like we are all going more insane, huh?? LoL!!
I sense a very strong woman when I read your response to me. I did. And, with your 4 babies and being a single mommy.....my hats off to you. April3108.....you are an Inspiration to me. All you had to say was.....4 babies, single mommy, & lupus. That was it!! I sensed strong will through your name and words. I like that.
Thank You so very very much for responding. If only you knew how much I appreciate your understanding words & similar paths. I am so thankful to You, the other wonderful people on this site, & the creator of this amazing site. I needed this. To survive.
Thank you all!!
Have a wonderful day, full of Love & all the laughter in the world, April3108!! You deserve it!!
Many Blessings & the Warmest Aloha to you & your 4 Precious Babies,
Hey Angie! Just got in and seen your message. Hope you are feeling a little better. Hopefully closer to getting some answers? I personally think one blood test is ridiculous. I can’t even begin to count how many I have had the last few yrs and now even more. Funny thing is I was diagnosed with Spondyloarthritis on top of everything else. My dr said he was completely surprised when it showed in my blood test a cpl wks ago. He wasn’t expecting it. I dnt even understand it all yet, but I sure hope I can get some relief. However, there’s no guarantee I will get any and if any maybe 20% and he said it’s very rare for there to be a 50-75% relief. So, the count is down to see what happens nxt. I sure hope you are getting somewhere with your problems. I know it’s like beating your head against a brick wall. Then having to constantly repeat yourself. I finally just made a list and gave it to the dr. Keep in touch. Best of luck. Keep your head up and stay positive. Most of all, STAND YOUR GROUND & don’t settle for NOT KNOWING You know your body better than anyone and you def know if something is wrong.
It sounds like you are having a pretty awful time with loads of health issues going on. This is the right place to get it off your chest as so many people can empathise with your symptoms and your bumpy diagnosis journey. Hopefully forum friends will offer you some comforting support and sound advice.
Having been a similar situation to you, if you haven’t done so already, write absolutely every symptom, issue and feelings that you have, down (maybe use this post!) with dates that you can remember. Make another appointment with your GP, talk through your write up, make it absolutely clear that you are not ok and do not leave the appointment until you have a referral to a Rheumy and a Neurologist. Sometimes when things aren’t that obvious with a GP, you have to really push it with them. I know it sounds a bit of a tough approach, but you are suffering unbearably and you need help, from the medical profession.
Low creatinine could mean possible problems with muscles or liver so that needs further investigating. As a result of extensive blood work I had with rheumy, in addition to positive ANA, I discovered I had a kidney problem and high cholesterol! I would never have found that out if I had kept quiet!
Gather your strength, take heart and go for it with the GP. I do hope you get the outcomes you are looking for and start to feel better soon.
You know what?? In your short response, I learned more than my visits to my GP. Amazing. Thank You so very much!!
Your advise is priceless. I appreciate it with all my heart.
I actually feel stronger now. Weird. It's like.....the comfort, understanding, & knowledge all of you offer is a renewed lease on myself. Make sense?? LoL.
I feel so empowered with your words of comfort to me. Thank you. And, I feel strength as I'm getting advice from you.....someone whose talked the talk & walked the walk.
You are wonderful!!
Keep me posted on your Journey!!
Have yourself a fabulous day, full of love & lots of laughter!!
Hi Angie, thank you for your warm greetings! I think because people here have trodden a similar path and persevered with their own suffering, we can provide a great deal of comfort to others. I find that reading posts and replies, as well as making the occasional contribution, helps me feel less alone as people here, truly understand. Take good care x
Omg it’s so similar to me. Try another dr or even change your Drs surgery. Be prepared to pay private to see a rheumatologist as it works wonders. I paid £225 then £120 for a follow up appointment he thinks I have lupus and have an appointment with him on the nhs it saves a lot of time. I had to sell stuff to have the money to pay private. It’s worth every penny. Get your medical records too. Get a friend to go with you. Good luck. Take care. Helena
I think everyone is diagnosed with fibromyalgia before a lupus diagnosis. I was told I had fibromyalgia until the rashes from photosensitivity set in and I had a biopsy done.
Hi sweety your in a bit of a state arnt ya ..bless you..can I ask if you've been tested for diabetes? Some of your symptoms really sound like you have it..numbness in your hands and feet..pain in your fingers ..plus I have M
E hun and it's flu like..can be very painful..and very much like fibro..I havnt been diagnosed with lupus either.but have a lot of symptoms with the sun..yet abroad it's fine !!! Tell doctor you must get tested for rheumatism..I have the psoriasis rheumatism one..listen to me now..it WILL get better..I know at mo you don't think so but hun it takes time..if your feeling really crap..have a cool bath..put t.v. or music on..try and read a book..whatever will help you chill a bit..it is difficult but you WILL get through I promise..I'm worried about you..have you any friends that can one and be with you for a bit ? Hugs for now xx
Check out my posts about my sister, latest yesterday. She’d been told Fibro and we just paid for her to get private second opinion from a very good rheumatologist. She had fevers, aches, pains, headaches, abdo pain, skin issues, extreme fatigue, headaches / migraine, vivid dreams, hair thinning etc etc etc. She’s now been told she is on the auto immune spectrum and had EDS type 3. I’ve told her never to mention the fibro label ever again. Read my post for more details. You need to see a good rheumatologist. Good luck. Wendy
Ask for a referral to a rhumatologist, or better yet, a dermatologist if you have a rash. My dermatologist did a biopsy. The biopsy came back as Lupus SLE and no doctor ever even suspected it.
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