hi, i hope i am not offending anyone here i do not have an official diagnosis of lupus yet but was told by my rheumy in 11/12 that i had "borderline lupus" and that i would be retested next month. i am not being treated for anything other than fibromyalgia with anti-depressants and neurotin. i have something new come up that i wondered if might be a symptom, i had a red scaly rash right under my right eye for a month or so then it turned black, now the other eye is turning black underneath but there was no rash there. I have just been so sick for years with no answers and i do not think i have fibromyalgia as i do not have the tender points associated with fibro. i have sores all in my mouth and nose. i have had a postitive ana, high inflammation markers and trace amounts of blood in urine, along with some other urine abnormal results, i do not understand what it takes to get a diagnosis, i just want to find out what is wrong with me so i can get some treatment and get better, thanks, kel
Welcome, kel, I think this is the perfect place for you to be as you figure out this diagnosis. I have seen pictures of lupus patients with dark shadows under their eyes such as you describe; insufficient water intake can contribute to this.
The Lupus Foundation has a terrific website with information about symptoms and diagnosis:
http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2239&zoneid=524
Take a look, and it will help you be prepared for your doctor appointments.
The main question is: are you being seen by a doctor who understands and treats lupus? You may want to check with our other members from AL to see where they are being treated. Best wishes!
yes, i am being treated by a rheumatologist, i am from a small town in alabama and not many rheumy's here i have to drive 3 hours one way to see her, because my ana has gone from positive to negative to positive to negative and then negative again. obviously she only goes by the blood test not the physical symptoms, hurting and really disgusted right now, havent been able to walk because my right knee is busted and the xray showed nothing, i am 43 years old and almost to the point being bed ridden. i feel like a 90 year old woman and look like one too, i have so much depression i dont get out of bed for months at a time and the fatigue is so bad i can hardly even stand sometimes. i havent even left my house in months except doctor appointment and the doctor i have used for over 10 years told me fibro was a gargage can disease, another rheumy told me it was psychological, so yes this is my second opinion, borderline lupus. can you believe she gave me tramadol for the pain and that was it,
It sounds like you have been through a lot. Your story will be a familiar one to many of our members, I think. I hope our members can help you find a better rheumy -- it sounds like you are being undertreated.
Kel, you are in the right place!
My husband says doctors don't have all the answers, that's why they are "practicing" medicine : P
Have you had your Vit D tested? Ann A. is passionate about this, and has posted many discussions. A deficiency in Vit D, leads to fatigue and mood swings, and lupus patients can be deficient in this. I just had a blood test for this and my throid as well, and I'm waiting for the results. You'll get lots of support here and ask any questions that you have. If your "10 yr" doctor has that attitude, maybe an internist or just a new PC is a good idea.
dancermom, that's a great tip about the dark shadows and dehydration. Lupus is very dehydrating, and something I struggle with cause I'm not the most disciplined water drinker.
yes, i do try to drink a lot of water and at one time my vitamin d was low but it is good now, my thyoid is normal but my thyroid gland is swollen so were are watching that as well.
Sadly, you are lucky to get even that kal. Doctors are so scared to treat our pain. I read an article about narcotics and what the long term affects are. Basically yiu build a tolerance to the medicine so you have to increase the dose to get any relief. After so much of this cycle, when you stop, your pain becomes more intense. There is a medicine called Sudoxone that blocks opiod receptors. The doctor told me it is great long term but short term it’s not. Because the receptor is blocked, the medicine can’t get through and give you relief for up to 24 hours.
I am one a natural cherry concentrate for inflamation, healthier sleep patterns and joint health. I is completely safe for us. The brand I bought is called Michelle’s Miracle. You mix the concentrate in water and drink it. So far, it has been doing something. It can take up to 4 to 6 weeks to see good results.
About the skin issues. What is yiur platelet count atm? Another thing I have been seeing symptoms of in Lupus patients is psoriasis. I don’t really know for sure what it could be because I am not a doctor. I do feel a lot of us have more knowledge about these symptoms and issues we have, that most of us should have a degree ny now lol.
I, like you, was so depressed for a very long time. I hurt so bad and couldn’t get treated because I couldn’t afford my insurance copay. I am on a great insurance now but still awaiting referrals to the Rheumatologist. You have to find something to help you through these
rough times. I have children so I push myself to interact with them as much as i can. I find stuff to do so I don’t continue to make my bed my best friend.
Don’t be afraid of offending anyone here dear. We are not here to critisis and we won’t do that to you. We will however give you a great support system and hopefully answers to your concerns.
I do suggest a cbc if you haven’t had one done lately. Are you bruising easily? That is what happened to me, it was severely low platelets. If you have access to a pool, get in it if possible. A heated pool is the best. I also suggest compression socks for circulation if you are having numbness and tingling
I can’t think of anything else right at the moment. Feeling ugh so gonna close this off. I sure hope your Rheumatologist can help you with a definative diagnosis dear. Prayers are with you and stay blessed.
Good Day from Michigan!! I’m a 44 yr old mom of 2 children. Diagnosed w/Lupus @ 28yrs old after several years being told by Drs symptoms were in my head, I was fine, just diet & exercise & I would be fine repeatedly (mind you I weighed 125lbs).
Since I finally was diagnosed by my Primary Physician, who sent me for tests because I had the same symptoms his sister w/Lupus had. All the “Specialists” were nothing more than a waste of time and money!!
Since then I’ve had a collapsed artery in my left arm 4 months before wedding, surgery to save arm. Ten days before our first anniv. our son was born, baby was not coming fully out after 6 hrs hard pushing, so emergency C-section.
Was in hospital for month with nose bleed, pleurisy, blood clot in leg, pulmonary embolism, migraine non-stop. And a doctor had the nerve to tell me they couldn’t find any thing wrong with me they believe I had Post Pardon Depression. Well, that did not go over to we’ll as you can imagine, I gave the room full of doctors a reminder of what I went through in their hospital over the last month and asked How that relates to depression and not Lupus after I have being treated for Lupus, not depression.
Since, I’ve now had a stroke, and take warfarin, now have seizures and take meds and have an implant, vertigo a lot, and worst is Extreme Fatigue. I can drink 2-3 cups coffee & fall asleep every day. It’s hard to stay awake. My memories are going w/seizures and no energy to do all I want w/my family. Lupus is the least known about disease out there, lowest funded by government, we need to teach America what we go through.
Hi Kel,
I am very new here also, but I can tell you that these folks know what they are talking about and experience trumps diplomas on walls every time in my opinion. Stay ... read the posts ... ask questions, and you will find answers and encouragement. I know I will.
Blessings and I hope you feel better soon,
Sharon
yesi had rare platelet clumping dr didnt see concerned, rbc and wbc ok
Lucy Lou said:
Good Day from Michyigan!! I'm a 44 yr old mom of 2 children. Diagnosed w/Lupus @ 28yrs old after several years being told by Drs symptoms were in my head, I was fine, just diet & exercise & I would be fine repeatedly (mind you I weighed 125lbs).
Since I finally was diagnosed by my Primary Physician, who sent me for tests because I had the same symptoms his sister w/Lupus had. All the "Specialists" were nothing more than a waste of time and money!!
Since then I've had a collapsed artery in my left arm 4 months before wedding, surgery to save arm. Ten days before our first anniv. our son was born, baby was not coming fully out after 6 hrs hard pushing, so emergency C-section.
Was in hospital for month with nose bleed, pleurisy, blood clot in leg, pulmonary embolism, migraine non-stop. And a doctor had the nerve to tell me they couldn't find any thing wrong with me they believe I had Post Pardon Depression. Well, that did not go over to we'll as you can imagine, I gave the room full of doctors a reminder of what I went through in their hospital over the last month and asked How that relates to depression and not Lupus after I have being treated for Lupus, not depression.
Since, I've now had a stroke, and take warfarin, now have seizures and take meds and have an implant, vertigo a lot, and worst is Extreme Fatigue. I can drink 2-3 cups coffee & fall asleep every day. It's hard to stay awake. My memories are going w/seizures and no energy to do all I want w/my family. Lupus is the least known about disease out there, lowest funded by government, we need to teach America what we go through.
Does Michelle's Miracle have Vitamin K in it?
Destiny Scott said:
I am one a natural cherry concentrate for inflamation, healthier sleep patterns and joint health. I is completely safe for us. The brand I bought is called Michelle's Miracle. You mix the concentrate in water and drink it. So far, it has been doing something. It can take up to 4 to 6 weeks to see good results.
It can take 5 years on average to get an official diagnosis of Lupus. My symptoms started at age 23. I had Epstein-Bar syndrome for a year and never really recovered, after the birth of my son. I didn't get diagnosed until I was 48. I didn't know anything about Lupus except that an Aunt had it. She died when I was young. Once I read the criteria I realized I had 7 out of 11 items listed since I was 24. You only need 4 to get diagnosed. Some doctors will treat you with meds with an ANA that changes, depending on your other symptoms. The Lupus Book states that 10% of patients with Lupus never have a positive ANA. READ everything, learn, become your best advocate. And journal daily all symptoms in a notebook, even minor ones; created a check list for ease of use. Keep going back to the doctors with the facts, don't give up.
I have a very restricted diet due to reoccurring blood clots (in my heart, legs, and lungs-all 4 quads), CDK 2, and raised liver levels. No vitamin k allowed at all and no dairy. I am looking for a meal replacement for when I am too sick to eat. Any ideas? I am going to post this in main as well. Thank you.
lone wolf said:
I have found a lot of help in teh world of global medicine, chinese, ayeurvadic( from India), Native American, herbal approaches, and a BIG change in diet. I have been a vegetarian for 25 years, and a vegan for 10. This has made a huge difference in my symptoms. No Western Doc had any info. on how food can be used as medicine.
Hello Kel: It is harder to deal when you have a Dr. who ONLY goes on the blood tests...and not the patients imput. Most doctors do this at first...but as they come to know you and see different symptoms and different levels of pain and disability...they usually come around to treating the patient...and not just the blood tests. If not...get a new Dr. I have had lupus for over 40 years..and I've had lots and lots of illnesses and surgeries that go with it including difficult births and a miscarriage. I doubt there is much I've missed. I've NEVER been prescribed pain medication. Not once. Only following surgeries and for limited amounts. I have found Planquenil, Prednisone when needed...and Meloxicam to be my three mainstays in this battle. They help. Exercise (Lord YES...I do now how much that hurts)...I have bone on bone arthritis in one knee and one hip...and little to no connective tissue left in my spine...pain is a part of movement for me. I DO however MAKE myself walk at least a half a mile a day...hopefully now and then I make a whole mile. Sometimes I limp and hobble and wince...but I do it. I swear it has helped me keep this disease at a manageable level most of the time. There are times...when I can't get off the couch for any reason other than to throw up or use the rest room for a few days in a row. When I must...I do give in and moan and groan and be sick. As soon as possible I get up again...and make myself walk again...starting with maybe 100 yards...and working my way back up to a half a mile....or more. I think the main thing to this disease is simple. Give in to it when you have no other choice...and fight back whenever you can make yourself. It's been working for me for over 40 years. Best of luck and blessings to you.
i had an epstein bar virus too along with breast milk wen i wasnt pregnant, high prolactin levels, and have to be checked periodically for pituitary tumor, i have never been right since the birth of my first child and that was in 1989 but then again i havent been right since i was a kid, in and out of the hospital with malnutrician , "growing pains" and i had braces from my hips to my toes and wore special shoes too.
Rejara said:
It can take 5 years on average to get an official diagnosis of Lupus. My symptoms started at age 23. I had Epstein-Bar syndrome for a year and never really recovered, after the birth of my son. I didn't get diagnosed until I was 48. I didn't know anything about Lupus except that an Aunt had it. She died when I was young. Once I read the criteria I realized I had 7 out of 11 items listed since I was 24. You only need 4 to get diagnosed. Some doctors will treat you with meds with an ANA that changes, depending on your other symptoms. The Lupus Book states that 10% of patients with Lupus never have a positive ANA. READ everything, learn, become your best advocate. And journal daily all symptoms in a notebook, even minor ones; created a check list for ease of use. Keep going back to the doctors with the facts, don't give up.
i have been anemic on several different occasions one being when i was pregnant with first child, had to have blood transfusions and then years later another one. i am new here so yall bare with me i dont know if im doing this right responding to to others, but i have been really sick since 2000
what is the cherry drinkm Micheles miracle and where do you get it.I too am having extreme pain since the beginning of this month......I have always been an outdoor worship of the sun! never knew it was killing me, the docs found out I have celiac disease and dermatitis herpetiformis, I am 54 yo type A Personality , which doesn't help....I can't turn the switch off at night, so I take ambien or vicodin or alcohol. I have recently lost my health insurance so no prescription plan, and have a very limited income, I have medicare A and B, which I have to pay 150 a month for, it's crazy to try to make ends meet. I too am depressed.due to my rambling mind and can't keep forcused, have all these great ideas of projects I would like to try and then I remember, i'm so fatigued and ache all over there is no way I could start a project. I was diagnosed 2 years ago and my symptoms are getting worse with every new day. I didn't go out in the sun at all last year, like a vampire, and I did have a little more energy, but this year i'm out more with the grandkids, I want them to remember the few good times they had with me, but I do have to force myself and to endure the pain after they go home. i'm on Cymbalta it has helped me a lot but have to go to a real cheap drug cause I can't afford it, so afraid I will be very depressed and joint pain getting worse. thank you all for allowing me to ramble, I try to be the stoic one in our family of 7 children, some of my other siblings have mental issues and my brother has kidney failure due to diabetes and htn, he has had 2 kidney and a pancreas, both kidneys rejected and continues on dialysis 3 days a week, that is tough, kudos to him to have the strength to keep fighting. I am looking for a second opinion for a rheumy in the southern part of New Hampshire or in around Boston Mass. any ides? thanks for listening
Does Michelle's Miracle have Vitamin K in it?
Destiny Scott said:I am one a natural cherry concentrate for inflamation, healthier sleep patterns and joint health. I is completely safe for us. The brand I bought is called Michelle's Miracle. You mix the concentrate in water and drink it. So far, it has been doing something. It can take up to 4 to 6 weeks to see good results.
Hi Kel,
Your post almost sounds like I wrote it :) I also had the same rash under my eye (looked like someone punched me)
I have been going on the fence for over 5 years now with sickness/pain and no dx because my dr also only goes by labs for dx, but she is treating me as if I had lupus (go figure)
I hope you get some answers soon! Take care
For a Rheumatologist in that area, I would recommend Dr. William Lloyd in Salem, MA. He is a kind and compassionate doctor, and keeps up with the latest in research, etc.
mo said:
I am looking for a second opinion for a rheumy in the southern part of New Hampshire or in around Boston Mass. any ides? thanks for listening