Lupus Diagnosis and the FMS Link

For a while I thought I had SLE (Systemic Lupus) and it scared me, but I was determined to find out for sure. I knew it was hard to diagnose. I knew that some cases took years to determine. I knew it would not be an easy road to travel. I wanted to proceed anyway.

A majority of my symptoms led me to SLE web pages all over the Internet. I was fairly educated about the disease. I have an aunt who has had it for years. I read stories of folks fighting to get the right diagnosis. I read stories of remissions. I read stories of people just like me whom are looking for a diagnosis of some kind. The people looking for a diagnosis overwhelm the Internet, and most of them believe it to be SLE. Many of these people are diagnosed with other things and could be misdiagnosed.

Many people have found the answers they have searched for and finally receive the help they so badly need. They are now medicated and battling SLE in hopes to go into remission. Some of these people however took years to finally get the proper diagnosis and it turned out in fact to be SLE.

I had blood tests done while I was pregnant with my youngest. She is only five months old so it wasn’t that long ago. There was nothing that shown up as SLE in the blood work. I was happy, but worried that I still had SLE because of all the stories I had read over the Internet. After the round of blood tests I was diagnosed with FMS (Fibromyalgia) and I wasn’t very confident in that diagnosis at the time.

As time has passed and the more I learn about FMS I realized that I probably do have a proper diagnosis. This doesn’t take away the worry about SLE however. Many people with SLE are found to have FMS too along with many other ailments and possibly other Auto Immune Diseases. I just take one day at a time and try to read as much as possible on FMS, Lupus and other illnesses in the Auto Immune family. I try to put out resources for others so that I might provide help for them. It is a tough road to travel alone.

The hair loss I suffer from is quite frightening. There is no answer to it. While I was pregnant they found that my Feritin level was desperately low and that was probably causing the hair loss. Since giving birth I have had it checked again and it is fine but my hair is still falling out. This is one symptom I do not have an answer too and I think it is SLE.

The other problems I have that are not associated with FMS are the mouth and nose sores. They come and go all year round. Some people with FMS do have problems with nasal sores I’ve read. This could possibly be an ailment of FMS but I strongly believe it also links to SLE.

I’ve asked my GP to do some further testing for SLE but she is confident she says that I have FMS and not SLE. This is also what a rheumatologist told me. I am worn down in this fight right now so I will just accept FMS diagnosis. I do believe I have FMS but I believe there is a under lying condition that hasn’t been found yet for these other symptoms.

I hope that others get properly diagnosed. I hope that if you’ve read this posting that you utilize the links I provide on the sidebar. Remember that you are not alone.

About JustOrdinary

Hello my name is Rachel…around here I’m best known as Just Ordinary. I created this blog page to share pieces of my life with you, the reader, also to share my projects, and writings. This blog page I have created is a collection of realty and fiction. Not everything I write pertains to me or my life.

Posted on Sunday, November 18, 2007, in Fibromyalgia, health, journal, Journal Pages, life, Lupus. Bookmark the permalink. 7 Comments.

  1. Hi – thank you for sharing your perserverence with all who are struggling to get a proper diagnosis. I admire your determination to be proactive. I am also very glad that you linked to But You Don’t Look Sick – its such a great site and the title says it perfectly. You cant get a lot of information there about pursuing the proper diagnosis.
    Warmly,
    Psychscribe
    http://psychscribe.wordpress.com

  2. And you are not alone also. You are in my prayers. I do hope your well now.

  3. Thank you for your post.

    I am sitting here feeling very depressed and frustrated. In 1996 I started having joint pains and symptoms that I could not understand. I was in basic training when my fingers started being black every morning when I woke up and painful and were in a stiff very difficult to straighten out position. I got through that somehow. I went to AIT (military school) and my knees started. My fingers stopped being so severe and hurt and tingled mildly. Long story short I kept getting sick.
    In 1999 after feeling like I was going crazy for years with no one no longer wanting to hear about my many undiagnosed aches and pains, I was finally diagnosed with Lupus.
    NOW they are telling me they no longer think it is Lupus and my blood work is no longer consistent with Lupus – But I still feel the same terrible feelings, joint pains, fatigue, fingers and toes aching and tingling, pains shooting down my entire thighs to my legs and toes, and did I say fatigue – worth repeating – FATIGUE. They are not giving me any meds anymore for Lupus and I feel like I am slowly dying and nobody is going to HELP me before this LUPUS or WHATEVER kills me.

  4. Hi – Just wondering if you’ve tried excluding gluten from your diet?

    9 months ago my hands and feet stared tingling, then came bone pain, was tired and weak all the time, cramped muscles, felt feverish, uncomfortable stomach, headaches, when i was at my worse i got a rash from being in the sun (never ever had this happen before)…. Got blood work and all seemed okayish, slightly high on platelets and just a hint low on MCV, iron and b12 were okay, so nothing that raised any concerns…. From my own research on my symptoms i went gluten free.

    Cutting gluten out of my diet helped me, granted it’s tricky, i mess up and will get bad for a couple weeks when i do. It’s in a lot of things like shredded cheese and some soy sauces, even a tiny bit seems to set me off. Going gluten free might be worth a try for you. It took me a month of being gluten free before i felt better, but i really do feel better when i’m able to stay away from gluten.

    My boyfriend has FMS and i’ve read a bit about the gluten free diet helping with that as well, he’s a little resistant though : )

  5. Tingling, thanks for stopping by and hope to see you here again sometime.

    I appreciate all the tips I get so thank you for the gluten tip. I might try that to see if it will help with my fibromyalgia.

    Don’t be a stranger!

    JO

  6. i am thankful to have found a story like mine. I have been sick off and on for about five years now and the only diagnosis i’ve received is fms and atypical trigeminal neuralgia one came from a rheumotologist and one come from a neurologist, i suffer daily with terrible pain and a whole host of other ailments, i recently ended up with a case of steven-johnsons syndrome from the meds. have tried alternative vitamins and such, i feel lost. I feel like my life is not my own any more and my job is suffering severly. I am trying to find work that i can do and not have to travel as my eyes are getting worse. i don’t have much support, my husband has no empathy or sympathy. how do you do it?

  7. Hello Stacey I am glad that you stopped by. I am sorry to hear of your problems. I really often wonder how I do get through the health problems I have, my only answer is God and just taking one day at a time. I do what I can physically on days I’m able, other days I rest and take care of my body. I’ve learned that it is very important to listen to your body. You have to be in tune to your body and what it needs. If you are weak, rest, if you hurt, rest, if you have a good day don’t push it too far to where you pay for it for days afterwards.

    It also is important to have a support network. Try educating your husband on what is wrong with you. Information is power and perhaps when he starts to learn about your situation he will grow empathy for your ailments. It is hard to understand something you can’t see, and it is hard to comprehend the pain and problems you have if he doesn’t have the facts about the illness.

    I wish you well on your long journey ahead, my thoughts and prayers go out to you and your family that maybe soon you find peace and a comforting way to live with fibromyalgia. God bless.

    JO

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