Please tell me your story

General
1

Hello Everyone - In a previous post I asked about negative blood work not supporting symptoms.

I would really appreciate to learn about your diagnosis.

What were your initial symptoms?

How many Doctors did you consult?

How long did it take for you to be diagnosed?

Do you also have Fibromyalgia?

I guess this sounds like a survey however having some knowledge of the time line between the commencement of symptoms and diagnosis may help myself and others understand that the process is not only different for everyone but may take years for a true diagnosis.

Yesterday I had a particularly red and prominent malar rash on my face. I usually have it for several days then it settles down but it is always there in some degree. On these days my muscle and joint pain is more severe as well. My Doctor is not taking me seriously and I wonder do I have to wait until I have dangerous symptoms before he does.

He is my forth GP I have been to since I became systematic two years ago.Initially I thought he was different but without a positive ANA or any other positive bloodwork the Doctors quickly lose interest and only prescribe me prednisone. I do have an elevated sed rate and Hashimotos, but I honestly sense something else is going on because of my frequent debilitating attacks of Costochondritis.

My Doctor is really pushing for me to get off the prednisone but without it I cannot get up out of bed.

Family and friends just don't want to hear about it anymore. I did not go on and on about how I feel however when they asked me how I was I would tell them the truth. Now I just pretend I'm fine when the truth is I am really struggling.

Your contribution may help me enormously to know that I am not going crazy after all. Lol.

Thank you in advance very much.

Nic

2

You have to see a rheumatologist. Ask your PC doc to refer you to a rheumatologist. Depending on your health plan, if he/she or they won't do it kick dust. You have to be very assertive.

I was diagnosed with discoid lupus and then autoimmune hepatitis first. They couldn't put me off, I was yellow-tinged and had a big sore on my upper lip. So they had to find out what kind.

It took two years to diagnose SLE, but with it came Sjogren's. These two were thought to be under-the-radar and that I had them for years before I was diagnosed with anything. I remember having a high ANA when I was 29. Had Graves/Hashimoto's at the time.

Why do women (myself included) think they "might" be going crazy when they see a doc who is inconsiderate and uneducated about autoimmune symptoms and won't listen!? It's all in your head. Right!?

You have to hold on.

3

"Just prescribe me prednisone' is not a minor treatment program- prednisone has devastating long term effects and if you do not have life threatening disease you would be best off of this drug. It is important to understand that there are all levels of autoimmune disease and fortunately most do NOT lead to debilitating or catastrophic consequences Your fibromyalgia may never progress beyondthat and negative lab work is a good thing Flushing of the face can be normal for many people and is not necessarily and indication of more advanced disease. And even if you do have one of the more serious AI dzs doesn't mean you will ever have more dangerous symptoms. That beingsaid many of us have had a protracted and unfolding course in our diagnosis and sometimes it can take many many years to get a final diagnosis. I don't think your docs are ignoring you but they can't treat something that isn't there either Gotta hang in there

4

It all began when I was a baby... I had ITP and my platelets were so low I was throwing up blood. I was 7 months old. That caused the pediatrician to put a "red flag" in my chart. As a teenager I was always achy, but I never thought anything of it.

Two years ago I was very fatigued. I needed 10-12hrs of sleep at night, plus a 2-3 hour nap. Then I started feeling flu-like. I was achy and my joints were stiff and I was always so cold which made me hurt more. When that lasted more than 3 weeks, I called my GP. She told me it was a virus, but was going to run a thyroid panel, CBC, and what not to check for anemia. Since I don't eat a lot of red meat, anemia was a possibility. Everything came back normal and I still felt crummy. I called and told her I wanted to be tested for lupus. A week later, the ANA results were positive and I was sent to a rheumatologist. I couldn't get in to see him for a few months so I started keeping a calendar of all my symptoms.

He ran his own blood work. So many needles! My ANA was positive so the rheumy had the lab run the additional antibody panels. They were normal. My sed rate and complement levels were normal. So I was sent home after being told that it was likely I have a +ANA because I have a first degree relative with lupus. By then I was also experiencing some numbness in both of my legs and he referred me to a neurologist to see if a spinal or nerve issue was going on. once again, everything came back normal from the neurologist's tests. He told me to call if I experienced anything new and gave me a prescription NSAID for my aches and a prescription for the neuropathy. My legs stopped feeling numb and tingly so that was great.

Then I had pericarditis this past February. My aches and fatigue had continued along with a weird sore throat thing. He ordered me a prescription for Plaquenil. I was fatigue free after several weeks! It's really hard to go to school when you're that fatigued so when I stopped feeling so exhausted, I was ready to make the hour drive to his office just to hug him.

Over the spring, I was in another flare of the aches, chest pain, fatigue, joint stiffness, sore throat, mouth ulcers, etc. I went to see him in June. He ran another panel of blood work and I had a positive anti-dsDNA. That's when it became official, between the bloodwork and all my new physical symptoms.

So, it took about 2 years for it to be official, and three doctors (my GP, neurologist to rule out nerve problems, and the rheumy).

5

When I was in college I became extremely fatigued. I had a virus that wouldn’t go away and kept being misdiagnosed. After that I remember my primary care doctor told me that I needed 12 hours of sleep a night and that my throid was a little low. A few years later I was diagnosed with hypothyroidism and put on medicine for that and for depression.

Years later I had ovarian cancer and then was hospitalized for a kidney problem. They told me I had IgM nephropathy which was an autoimmune kidney disease. I’ve been on prednisone ever since for the last almost 6 years for that. I’ve had other symptoms like pleurisy and tachacardia and some other unexplained issues.

Last year they tried to reduce my dose of prednisone and something new came to the surface. That’s when I developed a mylar rash and was so achy and exhausted I couldn’t get out of bed. My ANA had always been negative up to that point. I went to see a Rheumatologist who told me that the rash could either be rosacea or a mylar rash but because mylar rashes were more uncommon he was going to go with rosacea. He told me I had adrenal insufficiency and just take more prednisone.

I went to a second rheumatologist who finally diagnosed me with mixed connective tissue disease and lupus. She put me on hydroxychloroquine and since then I’ve only had a couple flares that were I would consider a really bad where I can get out of bed and have the mouth sores. I still have mild flares where I’m achy and extremely tired but she told me to double my prednisone for 3 days when that happens so I will try it the next time I have an issue. Because I’m on prednisone and hydroxychloraquine they don’t want to try any new medicine right now. I have to be careful with my kidneys too.

It does take awhile I suppose if I had this when I had my kidney issue that would have been 6 years ago but it didn’t come to surface as quickly with the testing because I was on prednisone. Oh and most recently my ANA came back finally positive. So good luck and keep at it until you know what’s going on.

6

I started having issues about 12-15 years ago with PCOS, stomach reflux, what I now know to be hypoglycemia, asthma, and all kinds of other issues. I had pneumonia a few times. I would have low grade fevers for months. I would be in pain for months, I would have infections over and over. Nobody took me seriously. So I started shopping around for my own doctor. Finally I found a great endocrinologist who figured out my hypoglycemia, that was literally a life saver. But that just wasn’t enough. He sent me to a Rehumatologist as my tongue was always asleep. After 3 years of her following me and all my weird symptoms which never showed signs on blood test other then elevated SED rate I was finally diagnosed with lupus and visculitis due to the brain damage shown on the brain spect. If I had given up at the first doc who said just take some Valium or the first Rehumatologist who took one blood test and said you are perfectly fine because blood tests don’t lie! I hope his patients get better treatment than that!

7

Hello my name is Farydin Ortega. I was diagnosed with SLE at the age of 7 I was in the hospital for a year! Non of my family members have the illness just me. I remember I would get patiki eye on my legs,arms,face ect… I would go days with out sleeping because I would be in so much pain. My hands and fingeres would lock on me. I remember I would get yelled at and hit because I couldn’t explain to my family that I was sick. It was the last day of July and my family was planning to go to Disney for my older sisters birthday party. That day I woke up feeling great. All of use went to get our hair done and I remember I was walking out side with my step-father and I was paralized from the neck down! I was rushed to the ER. I was put in the ICU unit. I was put on chemo, really big dose of prednisone I was taking 350mg three times a day! They found out I had lupus in aug 1 of 1999. Ever sence I’ve been diagnosed I’ve been struggling for my life… And now I am 21 years old!

8

I was just diagnosed last Oct after about a decade of increasingly deteriorating health. I have NEVER had ANA pos test. It took my kidneys nearly failing after a stroke for a biopsy to be done. The damage is done and it's now a matter of controlling it. It is possible to have negative ANA although very rare, which is why so many doctors will dismiss Lupus as a possible cause. I have class 3 & 5 as well as lupus nephritis (obviously). After the lupus diagnosis is when I got the Fibro diagnosis as well as Sjogren's, COPD, seizure disorder, etc, etc.

You know your body better than anyone. A GP is not usually the right type of doctor to see for the symptoms you have described. A Rheumy would definitely be the better provider...just my opinion. My PCP was ready to send me to UCLA (a state away) because he couldn't figure it out. Don't let the damage continue if you can stop it. Get a referral if you need one or if not make an apt immediately. If your doc won't give you one, change. You are probably going to have to be proactive to get an answer.

Good luck!

9

I was just diagnosed in May of this year. I just started feeling "bleck" and getting low grade temps for almost two weeks. I finally went in after I started to have abdominal pain. They thought at first it was my gallbladder after testing for that and that all coming back negative. They put me in the hospital for dehydration it was supposed to be an overnight thing but led to a two week hospital stay. The first week was here at our local hospital where they found that I had ulcers from the scope they did. My local doc was not happy that was the cause and continued to search. When my heart rate dropped into the 30's and since our hospital is so small they then transferred me to the next biggest hospital. There I spent a week and after a week of testing and not finding anything they decided to tell me it was all in my head and sent me home without any treatment. They were going to send me to Mayo clinic but once they decided it was all in my head it canceled our trip to mayo. And told me to come back in a month and maybe they might have an answer. We then returned and saw my local doctor again and he then refereed us to Mayo clinic where we spent 3 long weeks. It took a rare ANA tighter for them to diagnose me with lupus, as well as the fact my dads sister has lupus. When we were in mayo it seemed like I saw every kind of specialist there was, from infectious disease to a pulmonoligist. They did a PET scan where they saw issues with my kidneys, after a kidney biopsy they diagnosed me with interstitial nephritis. It seemed like it just came out of no where, I was just going about my daily life and then whack I was out and sick. My local doc. thinks I have had it for sometime but after having mono in December and just the stress with daily life it triggered it more. I am better then I was in April but still not my old self. I was unable to do much for myself including walking, bathing and feeding myseld. And now I still am affected to the point where I can barely walk 15ft with out getting extremely fatigued and searching for air. So if I want to go to school, shopping or church I have to use a wheel chair. Its been a hard adjustment as I was in my freshmen year of college and just starting to experience life as an adult. Now I have to depend on my mom for simple daily cares.

Wish you all the best! :)

10

Hi Farydin,

I am both angry and sad that you were yelled at and hit as a child because you were ill. No child should be hit or yelled at, ever. I am also saddened that you are so young and having to deal with so much. I am 49 and I am feel like I am 109. I hope that you get some treatment that can help manage your symptoms so that you can live the carefree life of a young adult.

Hugs, MB




Farydin said:

Hello my name is Farydin Ortega. I was diagnosed with SLE at the age of 7 I was in the hospital for a year! Non of my family members have the illness just me. I remember I would get patiki eye on my legs,arms,face ect… I would go days with out sleeping because I would be in so much pain. My hands and fingeres would lock on me. I remember I would get yelled at and hit because I couldn’t explain to my family that I was sick. It was the last day of July and my family was planning to go to Disney for my older sisters birthday party. That day I woke up feeling great. All of use went to get our hair done and I remember I was walking out side with my step-father and I was paralized from the neck down! I was rushed to the ER. I was put in the ICU unit. I was put on chemo, really big dose of prednisone I was taking 350mg three times a day! They found out I had lupus in aug 1 of 1999. Ever sence I’ve been diagnosed I’ve been struggling for my life… And now I am 21 years old!

11

Looking back I believe I have had some sort of auto immune problems since at least 1987. I am 57 now. I have had panic disorder, phobias, depression since then. I believe these events weakened my immune system. In 1997 I went to a specialist who did blood work and saliva testing cutting edge for its time. My cortisol levels were backwards from what is considered normal. He did not explain the importance of these findings other than to tell me my body could not handle anymore stress. I had teenagers at the time and thought what am I suppose to do hide under a rock. I wish now I could have heard what he was saying and that he was more descriptive in the importance of his findings. I continued to have panic attacks and a lot of anxiety. In 2007 I was diagnosed with fybromyalgia. I was fatigued and in pain with muscle pain. It went on from there to extreme fatigue muscle pain joint pain, This year in july I was diagnosed with Lupus and Addison's disease. I believe for me this has been a long progression of my body exhausted and having adrenal fatigue for many years. How i wish I would have had the internet back in the 80's. How lucky are we now to have so much information and online support.

I am on mythyprednisone and plaquinel, at this point this medicene has saved my life. I am slowly going off the prednisone now. I want to add I have seen probably more than 100 different doctors or more in my lifetime looking for an answer. most thought it was panic disorder. I think it is like the saying "the chicken or the egg" which came first???

12

Hello. I’m Tanya. I was diagnosed with mild Rheumatoid Arthritis at age 7, my dad and I choose physical therapy and NSAID for pain over prescribed medication. Up thru high school OTC ibuprofen, hot baths, arthritic creams and days of rest were my self prescribed treatment.
Some time just after high school I was diagnosed with Hashimotos. This was after several embarrassing times of falling asleep on the job. This dx took 3 yrs. with one pos ANA. Every year since 7 I had my ANA checked for lupus. I was 23 when I gave in and took Celebrex/ Vioxx for pain. Then it was taken off the market. My endocrinologist told me I have PCOS too. I don’t remember what year He worked with me to keep me off prescribed meds. We would use pred for a short time and ween off. He was great. The combo of PCOS and Hashimotos led to infertility and due to clomid I have twins! My endo really wanted a rheumy on board but I refused due to being traumatized by one at 7.
It was not until after I had a very clutzy fall and needed thumb reconstruction that I realized how much pain I was just living with. As they weened me off the muscle relaxers and pain meds all my joint pain returned and seemed worse. To my surprise I remembered feeling it before my surgery but after surgery I had no pain on meds. I told my internist about my pain experience 2/2012. He ran a list of blood work as long as I am tall. My Anti-dsDNA came back positive. I finally agreed to a rhuemy. My first one said just tell everyone you have lupus. I meet 6-11 markers including malar rash that has never disappeared. The dsDNA and ANA titer are both positive she was going to use the diagnosis of Undeterminated Connective Tissue Disorder and put me on Plaquenil. This helped So much until my third flare. But now I have new insurance and have to see a new rhuemy she wants to tell me I don’t have lupus or UCTD and the rash is abnormal. But she asked to do her own blood work and kept me on Plaquenil. She also agreed that I do have multiple autoimmune disorders which is not good and usually needs some rhuemy imput. So I’m keeping her on board for a few months until my body tells me she is not good for us. My only advice: find drs that listen and explain. You may disagree but if you stand up to them it may get you answers.

13

After the birth of my son I was first dx by my Endocrinologist for Hashimotos. With more extreme multiple symptoms, fatigue, inability to lose weight, malar rashes when long periods in sun, constantly sick and fevers that would last multiple weeks, hypersensitivity to any medicine prescribed or OTC. at first they thought I had Sepsis. Then went back to Endo. and through a routine urine test result, he noticed my loss of protein was way out of normal range is(up to 200 normal mine was 6,500) He then prompted me to do 24 hr for accuracy. Then was referred to Nephrologist who ordered kidney biopsy (son was in fourth grade by now and i was getting worse) By then I referred to a Nephrologist in Cleveland because the local one did not know what to do with my severe case. Nephro up there put me on CellCept for years without ever referring me to a Rheumy. He said I had many symptoms of Lupus but my symptoms didn't fit all in that "basket." He retired, and I was sent back to a new local Nephro and he said I should had been referred to a Rheumy along time ago. He did extra testing on me I don't remember the tests but he said these show up positive like yours in Lupus. in that time whole time frame I would have long flares and fevers that wouldn't go away. He witnessed my most severe one last October. This February I just had another kidney biopsy and it showed severe Lupus nephritis. My son just turned 18 last month. I am 43.

14

Louters,

Sweetie,

I know that this has been difficult, I also know that just over the last 2 months I have started feeling better and although I haven't rebounded, I have managed to have dinner out a couple of times and make it to the grocery store about once a week. Sam's or Costco would not be an option, but a small trip is now possible.

What I am saying is that it's been a short time since you started your medicine, and there it will take time for it to start taking effect. I just saw my Rheumy today, and although I am showing anemia again, my other labs are looking better. And, one of the things that my husband pointed out to me is that 8 months ago when I started tx I was so sick I didn't care what I could or couldn't do and now I am starting to get cabin fever. That's a good sign. So it's just about the time frame I was given for the plaquenil to start working.

You will likely have to make adjustments, but I don't doubt that you can do it.

Hugs & Health,

DeAnne

Louters said:

I was just diagnosed in May of this year. I just started feeling "bleck" and getting low grade temps for almost two weeks. I finally went in after I started to have abdominal pain. They thought at first it was my gallbladder after testing for that and that all coming back negative. They put me in the hospital for dehydration it was supposed to be an overnight thing but led to a two week hospital stay. The first week was here at our local hospital where they found that I had ulcers from the scope they did. My local doc was not happy that was the cause and continued to search. When my heart rate dropped into the 30's and since our hospital is so small they then transferred me to the next biggest hospital. There I spent a week and after a week of testing and not finding anything they decided to tell me it was all in my head and sent me home without any treatment. They were going to send me to Mayo clinic but once they decided it was all in my head it canceled our trip to mayo. And told me to come back in a month and maybe they might have an answer. We then returned and saw my local doctor again and he then refereed us to Mayo clinic where we spent 3 long weeks. It took a rare ANA tighter for them to diagnose me with lupus, as well as the fact my dads sister has lupus. When we were in mayo it seemed like I saw every kind of specialist there was, from infectious disease to a pulmonoligist. They did a PET scan where they saw issues with my kidneys, after a kidney biopsy they diagnosed me with interstitial nephritis. It seemed like it just came out of no where, I was just going about my daily life and then whack I was out and sick. My local doc. thinks I have had it for sometime but after having mono in December and just the stress with daily life it triggered it more. I am better then I was in April but still not my old self. I was unable to do much for myself including walking, bathing and feeding myseld. And now I still am affected to the point where I can barely walk 15ft with out getting extremely fatigued and searching for air. So if I want to go to school, shopping or church I have to use a wheel chair. Its been a hard adjustment as I was in my freshmen year of college and just starting to experience life as an adult. Now I have to depend on my mom for simple daily cares.

Wish you all the best! :)

15

I'm so sorry- this group WILL listen to you. I struggle with waiting for a diagnosis too. I'll post if/when I get one... In two months I have my first appointment with a rheumatologist. Thankfully I've been recording symptoms by the day and I hope it'll help. Basically, I've been suffering from severe fatigue and lack of focus (brain fog) for over two months. Also, I feel burning from my hands up through my shoulders, and tingling in my hands. I am clumsier than ever.

I used to be a runner. My energy tapered off and I started walking. Now I'm lucky to walk a mile or two, or several blocks, twice a week or so. The lack of energy and self-esteem damage have been the worst. I am not capable like I used to be and I worry and fear for my career.

You're NOT alone, and you deserve people who will listen. I think we can't give up hope, but in the meantime, we have to do the best we can to do what makes us happy. Take care :)

16

Oh- I was diagnosed with fibromyalgia 15 years or so ago

17

I grew up with the usual precursors to lupus. Then my depression got worse. I went from a usually cheerful person, to seriously depressed, even on my meds. Then it got so bad that I started doing stupid things, unrepeatable things completely not of character. At the time I had stopped my meds, convinced I could handle my depression with exercise and food. I got back on my meds after nearly a year of zombie mode, most of which I seriously do not recall. Back on meds, I woke to the reality I was allergic to gluten. Seriously allergic to the point that after being off of it for a month, I could taste the reaction to gluten immediately. Years of migraines seemed connected to gluten alone. Then the strange mood issues that I couldn’t recall. I couldn’t remember how to sign in ASL or speak Spanish. English got harder, and it’s my first language. I thought I was going crazy! I thought: this is me going Skitzo. Then, the face rash. No one would help. That’s how it felt. I would talk to my doc and he would tell me it’s an allergy, give me meds, and say to come back and see him when I need to. It got worse, not better. Then I got so tired. Me, this ball of endless energy was so tired all the time. I couldn’t bike to work. I couldn’t get through my work day with out feeling wiped out. And then the joint pain. The finger sores. The strange joint inflammation. I remember pointing out how weird it was that my thumb joint would hurt so much, but my doctor ignored it. Fall came, I volunteered to help with a trail preservation clean up project. The temperatures got so cold the first night that I barely slept, far too cold to do so. Weeks before I had felt like my arms, hands, feet, and legs were so painful that it was if they were injured. But dummy me when on the trail trip anyway. Glad I did, because that night made me realize the pain was not normal. I did nothing to cause any of it.
That was October, 2012. A year after giving up gluten and getting back on my depression meds. Yet I was worse than ever physically. I came down with something flu like. But it was so painful in my chest I thought it was pneumonia. I went to a second doctor, angry at mine for not listening to me. My face was worse than ever. Work started giving me less and less hours. Now I was leaving work sick and unable to stand. Life was drastically different for me.
The second doc said it was not flu. Not just my normal bronchial trouble either. He didn’t hear pneumonia. He felt it was something else. Drugs to kick my bronchial flare didn’t help. I moved to VA at the end of November. The trip was hell. Taking a plane ride should not be so hard. I could barely get around the airports. Barely make it to the next gate to get to my flight. Barely breath. Barely feel human.
My mom picked me up at the airport. She had not seen me in two years. She barely recognized me. Insisting we go to a doctor when I proved unable to eat or take care of myself, we found a doctor who treated me like a person. She ran blood. After a few days of being on prednisone, I was a differ person. She gave me a second set, and told me to see a rheumatologist. I found a great one. The rhemy took a lot of blood! But she also listened to me and really took the time to find out about all my issues.
That was January. She dx me with mixed tissue disease, meaning I have several autoimmune diseases. Lupus (SLE) and his friends.

That’s my story. Worst fears include going back to thinking I am crazy and the developed symptom of seizures. No offence, guys, but both scare the crap out of me. It’s bad enough that I keep having nerve issues. The feeling of bugs on me, twitching, and hypersensitivity. I don’t need to have more issues. But if those come, I know who to turn to for support. Love you guys!

Mindy

18

I am absolutely stunned that your biopsy didn't spell out Lupus. It was the biopsy that spelled out in the pathology report "Lupus class 3 & 5"...can't argue with the tissue. My Rheumy even said that without that pathology report she would have had a hard time diagnosing Lupus. SO glad that you are with the right doc now, or at least the right specialist. With luck you will start feeling better soon.

Hugs & Health,

DeAnne

Dvdom3 said:

After the birth of my son I was first dx by my Endocrinologist for Hashimotos. With more extreme multiple symptoms, fatigue, inability to lose weight, malar rashes when long periods in sun, constantly sick and fevers that would last multiple weeks, hypersensitivity to any medicine prescribed or OTC. at first they thought I had Sepsis. Then went back to Endo. and through a routine urine test result, he noticed my loss of protein was way out of normal range is(up to 200 normal mine was 6,500) He then prompted me to do 24 hr for accuracy. Then was referred to Nephrologist who ordered kidney biopsy (son was in fourth grade by now and i was getting worse) By then I referred to a Nephrologist in Cleveland because the local one did not know what to do with my severe case. Nephro up there put me on CellCept for years without ever referring me to a Rheumy. He said I had many symptoms of Lupus but my symptoms didn't fit all in that "basket." He retired, and I was sent back to a new local Nephro and he said I should had been referred to a Rheumy along time ago. He did extra testing on me I don't remember the tests but he said these show up positive like yours in Lupus. in that time whole time frame I would have long flares and fevers that wouldn't go away. He witnessed my most severe one last October. This February I just had another kidney biopsy and it showed severe Lupus nephritis. My son just turned 18 last month. I am 43.

19

HI Nicmic,

I know the waiting for a definitive diagnosis can be frustrating. I was there about 5 years ago. I lost my dad and one of my sisters within 6 months of each other in 2007 and 2008. Shortly thereafter I suddenly began having unexplained fevers and debilitating tiredness and weight gain for no reason. Initially diagnosed with GERD and thyroid issues and depression and told I was peri menopausal. Then came the palpitations and chest pain, diagnosed with panic disorder and sent to psych for depression because of the sudden death of my family members. Then came pneumonia and two hospitalizations back to back and GP decided to do lupus panel and I had positive ana, vitamin d diffency , anemia. Referred finally to rheumy, she looked at my eyes and in my mouth and dx'ed me with sjogrens, reviewed my lab work and dx'ed lupus. I have thyroid nodules and biopsy showed hashimoto, over the course of the years as new symptoms have emerged I have been dx'ed with anti phospolipid syndrome and fibromayalgia, as well as venous insuffiency in my legs. While last year was trying with numerous hospitalizations. This was has been difficult as I have definitely not had as many normal good days. I take plaquenil, vitamin d, symbicort and protonix everyday. Currently on prednisone and antibiotics for stubborn upper respiratory issue.

I had to learn to slow down, accept help from my loved ones and accept that my life has changed drastically. I have 5 kids, 4 grown with a 10 year old at home. He has slept in way to many ER rooms and I feel guilty that his child hood is so drastically different from my other kids. But he is healthy happy and the light of my life. I am still working at a job that I love. I have a large loving family and am still optimistic that I will have romantic love on my life again. This continues to be a journey that can be scary sometimes, but I am determined to make the best of this terrible disease. Hugs and love to you....

20

Nicmic,

The inflammation with response to steriods is a huge indicator that you have an autoimmune issue going on. In all these years I have had only two positive ANA tests. The fatigue, fibro, joint pain you have described are hallmarks of lupus. I don't want to scare you but you have to be persistent. I spent a year thinking I was pre menopausal and crazy from grief. The pneumonia and pleurisy were strong indicators, my sed rate is always high. Labs always show some level of anemia. My regular rheumy was out of town during a particularly bad flare. I saw another rheumy that ran tests. ANA came back negative and she asked me if I was sure I had lupus. I was sitting there in front of here with a fever of 101, swollen fingers, elbow and shoulders so painful I couldn't lift my arms and feet, ankles hurting so bad i could barely walk. She shrugged and said I guess with your history we can assume that the previous dx is correct. I wanted to cry because I felt that here we go again feeling. When my regular rheumy cam eback and told of her my experience , she said angrily that the otrher dr should have known that positive ana does not always correlate with level of disease activity in your body.

There is a good website, butyoudontlooksick.com that was helpful for me. I miss my old life, my old body, etc... but I am determined to make the most of the body and life that I have. I adapt, I use wheel chairs when I have to walk a long way. Since I have to travel for business from time to time, I use the carts in airports, check bags and found that when I wear wrist splints people will help with your bags. I went on vacation to DC with my family and they pushed me all over town, must admit it was a good way to travel.

Protonix, it is a proton pump inhibitor, is for my stomach, I leaned that GERD can also result from autoimmune issues. My advise is to remain upbeat, this is the only life we have. Take advantage of the good days, allow yourself to grieve your old life, research and be active in your medical care. find the right amount of drugs that work for you. I tried sevella and cymbalta for the fibro but i went out of my mid with my the side affects. i try meditation.

my sister was shot by someone that was having a fight with someone else, stray bullett nd she was gone. Dad was helping someone change a tire on the highway he was struck by a car and gone. life is short so we havbe to make the best of the time we have, educate yourself about lupus. blessings !!!



NicMic said:

Hi Prtyblk1 - Thank you for your reply. You sure have had a challenging time. I'm so glad that you have family support. I'm impressed with your positive attitude and that you are still working.

Unfortunately I am struggling to stay positive at the moment as my blood tests are not showing anything except a high sed rate and Hashimotos. I realise that it is a good thing not to show positive for Lupus, however I keep having very painful symptoms (and others) that are preventing me from doing the things I enjoy.

I don't know why I have so much inflammation in my body and am currently having repeated episodes of costochondritis. Have you ever experienced that? It is extremely painful and three times I've had to call an ambulance because it was so painful to breathe. The Medic that came to me this week said "You know, I have to attend to accidents where people are actually really hurt". I felt he thought I was over reacting when the last thing I want to do is go to hospital because I have animals that rely on me.

Some Doctors here still don't believe Fibromyalgia can be a debilitating illness. I wish there was a machine that could scan you and give an unquestionable pain reading. Then maybe I and others might not be treated at times with skepticism. They can do it for horses so why not people. Ha ha.

Problem with that is the scanner they use on horses is not always reliable. A horse I was selling was scanned during his Vet check. An area on his lower leg showed red and the Vet said he had an injury and was not sound. Subsequently he did not sell. That was two years ago and he has never showed any lameness and I'm actually very glad that we kept him. Lol. Funny how things work out sometimes.

(Although that same horse bucked me off and fractured my back in two places Oops!)

Do you mind if I ask what is Protonix? I'm sorry you lost your Dad and Sister. I also lost my Sister. She was young and beautiful with her whole life ahead of her and because of something that could of been prevented she was killed. My Dad has never gotten over it and it's almost like I lost him as well.

Good things are ahead for you! I sense it and you deserve it.

Hugs Nic