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Rachel’s Story (Lupus)

Purple RibbonWhere do I start? Well first, I have not been officially diagnosed with lupus. My symptoms started when I was about 15 years old, and I am now a 27 year old mother and wife.

At 15, my knees would start popping every time I moved. It was uncomfortable but not unbearable. I went to physical therapy, and they could not figure out what was wrong. I was told that it was all in my head. That was the first and not the last time I heard from doctors or physicians that this is all in my head.

Fast forward to me joining the Air Force. I was tired all the time and seemed to be sick all the time. I had my son at 20, and that was when my life started to crash down and continues to crash. It started with severe muscle spasms where I would feel paralyzed for a good 30 seconds. After tests and MRI’s, there was nothing wrong. My daughter was born when I was 22 years old. That November I would start running high fevers of 104, 105, etc. I had my butterfly rash. I thought I overcame it when January rolled around, and I seemed to be much better. I played it off, thinking it was just a virus.

At 24 years old, I started noticing the severity of my fatigue. Then around Thanksgiving, right after I turned 25, I felt like I had the flu. I was very achy and tired with more and more back pain. That was when my blood was drawn every other month, if not more. I saw a rheumatologist who played it off as possible fibromyalgia and said to keep exercising. Then my joints started to swell, first my wrists and fingers, then my knees and my feet and toes. For a good year I could not walk. I would have to crawl up the stairs just to go to bed where I was stuck for about a year. I had a hysterectomy, and I was able to walk again. The doctors and I thought, wow, how can endometriosis cause me not to walk but, yay, I was up and moving around again. But my joint pain never left me. My face is so swollen with sunken eyes, and I have trouble holding silverware, typing, cleaning, living. I have seen a total of 3 rheumatologist, all with no explanations. My heart rate at rest is 124, my blood pressure between 140 to 170, over 95 to 105. I am very dizzy, and I tell my husband to come and check on me at work if he has not heard from me to make sure I am alive. I live in fear every single day ,not knowing how I am going to feel. I go to bed in pain and wake up in pain. I have migraines almost daily now (my first at only 5 years old). I feel like I have robbed my children of a good mother. I have been asked by my 7-year-old when am I going to get better. Why can’t I open doors or tie his shoes? I am writing this, hoping that someone can bring me comfort and make me not feel so alone. If it is not lupus, then please tell me what your thoughts are. Thank you for taking the time to read this.

With love,

Submitted 09/15/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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  1. Robin Wagner

    I am so sorry you are having these issues. It took me a long time to be diagnosed also. I also have severe migraines and endometriosis. Severe constipation. I was finally told I have Ehlers-Danlos Syndrome. It is a connective tissue disorder. Not a lot of docs know about it. I was diagnosed by my neurologist. There are several types and mine is hypermobility. I am double jointed. It will not show up on any test. MRIs and nerve conduction tests will be normal. . No explanation for the pain. They have a website and a facebook page under Ehlers-Danlos Syndrome Foundation. This is all I can offer you. I hope it helps.


  2. Amelie

    I’m so sorry you are going through all this 🙁 Have you been tested for pheocromocytoma? I thought about Ehlers-Danlos too or myasthenia gravis…
    Maybe it would be a good idea to see a genetic counselor?
    I hope you find answers soon xx

  3. monique

    Don’t give up on trying to find out what’s wrong my doctors all thought I was crazy too for 6 yrs with the problems I had they even tried to tell me I was depressed and TRIED to give me meds for it,I was diagnosed with stage 3c ovarian and most people with it are misdiagnosed the only real way to find out is when you open someone up because the blood test c125 is for endometriosis mainly. which I also had so don’t let them make you think your crazy you know your own body. good luck and prayers.

  4. Sheliah Keen

    Don’t give up….I had many of the same problems you have and some of it started in my teens also. In my twenties I had headaches all the time and felt nauseated all the time. In my early thirties the joint pain and severe fatigue made me go feel horrible all the time and after passing out at work I was in the hospital and was told I was depressed and de-hydrated! It was probably two yrs before my dr. suspected autoimmune problems and I had positive ANA titre’s and was sent to a rhematologist. I was first diagnosed with fibromyalgia in the mid-90’s, then possible sjogrens (now secondary sjogrens); and then mixed connective tissue disease. In 1999 I was definatively diagnosed with Lupus when an anit-DNA test came back positive. Hang in there…it may take a while, but I’m sure the dr’s will find a diagnosis.
    P.S. I’m no dr, but it sounds like Lupus or another autoimmune problem??

  5. Diane Lynch

    I remeber those days of not knowing. First you definetly need pain management. The butterfly rash is Lupus. You may have a couple of things. I do. Have you been tested for Lymes disease? I will tell u this Changes in Barometric pressure causes swelling inside your joints to worsen. Soaking in a warm bath with 2 cups of Epson salt does help this. Do not use any soap with it. For muscle aches and spasms take a bath for 20 minutes with real Dead Sea salt. As pure as possible. U have to rinse this off afterward. Their is also a Morton Epson salt lotion for swollen joints. These r just to help u get more comfortable. Are u taking Celebrex or Mobic for pain. Baclofen or tizanadine may help spasms. Get the generic version of Tylenol Arthritis. It has the highest amount of Tylenol u can take over the counter. Without an actual diagnosis (which would be great) you can still improve the quality of your life. Don’t be afraid to tell a doctor u need these things regardless. I know with me the Drs don’t know which of my diseases is the source but we know the problem and take that approach. Fatigue is a major issue. Their are medications but u may need a diagnosis. Once it has a name or names u will still be in the same situation. I would try to get treatment for these things. U may uncover an answer that way too. Lupus is such a varying disease from one person to another. As is MS. If u have Lymes disease it has no rules. It usually settles somewhere after you’ve had it a whilst-like your joints or nervous system, it’s very common here on Long Island, NY. Treat your symptoms. They will still be their when it is named. I hope this is helpful. I do know pain. Pain management is for people who have pain all the time. Their are so many thing they can do and medications-some absorbed through the skin-to help you. You also need occupational therapy to help those hands. I don’t know if u have these options. Have u tried arthritis type utensils that are shaped differently or bigger. Quality of life should be your priority. I wish I could tell u a better answer.

    • Rachel

      Thank you so much for your advice and input. Yes, I was on Celebrex which did help, but they took me off it because I had a double fusion in my neck and the Celebrex was preventing me from healing correctly. I have tested negative for Lyme disease. The doctors actually test me often for Lyme disease because of all my symptoms. I do see pain management every month and they are the ones that are pushing for the lupus diagnosis. My MRI also was negative for MS. I will definitely be trying those baths. Thank you!

  6. Kimberly

    I to am going through the same thing. They think its endometriosis so on September 3, I received a luprone 3 in 1 shot, then the rheumatoid Dr. put me on nortriptoline (sp) omg the two has made me deathly ill, no sleep, nausea, vomitting, can’t eat, leg hurt so bad they shake to hold me up. I’ve been on boost, and liquid diet. I became delirious ended up in er. They keep testing for lupus neg. I do have cronic pancreatitis, no gall bladder, ibs, gerd, cronic pain, labeled as high risk for pneumonia. My last MRI on my neck suggest to get my lymphoids check out. Also testing for crohens (sp)? My arms burn both sides from shoulders down like they are on fire and my fingers swell up and I can’t hold things. Texting hurts to sometimes I can’t hold my 7 lbs dog. My legs wake me up when they hurt so I get up take the Epsom salt bath and it does help me a lot. Sometimes I have to soak 2-3 times a day. I get dizzy a lot. Fell got a contusion on my butt, sprang knee and ankle all on same side. I to had miss work. I’ve loss 28 lbs and getting week. I to have a son and been going through all this since I was 27. Appex burst then. I’m so sick if being sick. So if we keep in touch and who ever finds out first what it is, let the other person know. I’m 46 now and still looking for answers. I was just put on permanent disability. I to am being sent to pain management and physical therapy. Weather has a lot to do if I can walk or not. Thank you. Please k.i.t.

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