The Lupus and Fibromyalgia Connection

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edited November 2014 in Symptoms

Lupus article: The Lupus and Fibromyalgia ConnectionThe Lupus and Fibromyalgia Connection

Unfortunately, lupus and fibromyalgia are sometimes both present in the same person. Barbara Leech talks about her experience with both conditions.

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Comments

  • I have both problems Some days I cant stand the pain. Its getting worse Now i can barely stand on my feets . The pain has my legs and feet hurting so bad . Lately I have had more bad days then good one. I am currently taking infusion .It helps a lot until its all out of my system and the pain comes back again.
  • I have both Lupus and Fibromyalgia. I have very little quality of life, i really need help Thank you all for posting your stories I woll continue to read.
  • I also have both. My sister was diagnosed with fibro many years ago. I also was having pain and was not diagnosed because the doctors around my area didn't really believe in fibromyalgia. I was told I was crazy, that I had many other problems such as "getting older" (I was in my early 40s!), hormones, thyroid, osteoarthritis, etc. I gave up trying to be diagnosed with anything, and just took an aspirin when I hurt all over. (Not enough relief, but I have a high tolerance and carried on.) In the meantime, my sister was later diagnosed with MS. When I had a very bad episode, could not move at all and was quite swollen everywhere, at the age of 58, my husband took me to the emergency room. The kind doctor there knew what to look for and I was finally diagnosed with Lupus after being sent to a wonderful rheumatologist and many visits. My doctor has now decided that I have both fibro and Lupus, along with some other co-morbidities. I am doing much better with the medications. (I have also had bouts with uveitis and scleritis but have the best doctor in the country for that.) My dear sister passed away last summer from a fall and blow to the head. She had several problems related to her conditions, and the fall was probably a result of this.
    Although this is sometimes a scary thing, and there is always a new adventure, I am optimistic about life. I was a flight attendant, and recently had to hang up my wings due to all this, but I still travel when I can and enjoy my family and friends. I am now 60. This retirement was much sooner than I had planned on, but I do feel better now that I am not putting in the long days and over stressing my body. Thank goodness I have a very supportive husband and family!
  • I have been diagnosed with both lupus and fibro as well as thyroid and parathyroid problems and so many other health issues there is not enough space here. I have had issues with pain most of my life but stress is what finally brought my to my knees. Some days I feel like this is just too much for one person to take, other days I think it will be ok. I am grateful to this site for helping know that I am not alone.
  • I have recently been diagnosed with autoimmune disease I have had Fibromyalgia since 2000 and was tested several times through the years for lupus but always told it was negative now years later they tell me I am someone who test a false negative for Lupus but doctors feel I have it so I am now on methotrexate along with a bunch of others for Fibro. I recently had a flare up and broke out in sores in nose mouth and private area I was told to stop the methotrexate so that lesions will heal along with a strong dose of prednisone the sores healed with in four days. I still am trying to understand why I get flare ups they did a biopsy and I am waiting to hear about that they said they should be able to tell what exactly it is Lupus, MS or what?? I'm sick of being sick!!
  • What I experience daily mirrors your story to a T. I swear it was describing how I wake up every morning. I too tend to blame lupus more because I believe that Lupus is the root cause and the umbrella to which all of the secondary diseases fall under. Thank you so much for sharing!!
  • I also have both Lupus and Fibromyalgia...and now autoimmune thyroiditis just for good measure. My experience with them mirrors yours, tested with a positive ANA many years before finally getting the Lupus diagnosis. I too choose to put the FM on the back burner and concentrate on my other issues. I take Plaquenil and also Synthroid and Cytomel for the thyroid issues. I would like to try the Armour Thyroid, maybe next appt. I will see what my doctor thinks...she has gotten to know me and is willing to listen and let me try new things. My ever present, most infuriating symptom is fatigue--it drags me down more than the pain. Like all of us, I miss the old me but it's nice to finally know what's wrong and feel validated.
  • I am worried, I know I have had lupus for years and actually discounted for many, only now things are worse, heart, legs, maybe my kidney, hands, fingers and toes hurt. I can no longer put the pain in the back of my mind and forget it, its unbearable and last for days. I will see a Rheumatologist for the first time on Thursday in years. I have heard of the meds and want to take as little as possible but is a little going to cause more damage or should I take everything they say? Steroids scare me? The bouts are more frequent and longer and intrusive of my work day? Does Plaquenil take away the pain? Well I need other meds for pain?I want to be a fun grandmother and I want to do things with my grandson. What do I do that is going to get me through this?
  • sherriesherrie New Life Outlook
    Hi @SandraRios51, the unknown is scary for sure. I'd definitely encourage you to write down all of your questions to take with you to the Rheumatologist this week! Every situation is a bit different and they'll be able to tell you their recommendations specific to you. Let us know how it goes!
  • Hi my name is Evon I was diagnosed with lupus in 2005 and a few years back I was diagnosed with fibromyalgia. Is it crazy that I just came to terms with my disease a year ago and it hit me like a ton of bricks. Its depressing to know that you have something you have no control over. Im tired all the time, I get short of breath with some simple tasks, my muscles in my shoulders and back get so tight and sore, lets not get started with my joints in my body, and the memory loss really scares me. I try to get some of my friends and family to understand what I am feeling and going through I don't think they fully understand the depth of it. I know I am not alone in this but alot of times it feels as though I am. It felt good to get this out.
  • @msgina4 Evon, accepting our illnesses is the way to go. Then learn your body, you will know when and what can flare you up. I have both, vanishing lung syndrome, sjorgens, fatigue, it can keep going. I've been sick since 1994, a month after I lost my mom at the age of 56 to breast cancer. I am now 53 and 2 wks ago mammo found something. I also have tumor in my ear, on my 3rd opinion. It never ends. You have to learn your body. I was put on chemotherapy for a year, came out of the hosp. 2 days before 9/11.
    Due to my illnesses, I was medically retired from the NYPD (Transit) after 10 yrs of service. One of the saddest days of my life. Thank God for my husband...
    Everyday is a struggle. But, I am an artist and my outlet is the projects I create. Learned to get most things done in the morning hrs because it is still the best part of the day that you will feel a little energetic.
    I keep prednisone with my meds for the really bad flare ups. I too have a high pain tolerance but when it hits me with a vengeance, it kicks my butt. I ignore it and sleep for a good 15hrs and I will wake up feeling alot better. The body needs to re-energize.
    Laughing or crying flares me up. Can't watch scary movies, laugh, cry.... but, when I know ahead of time that its going to be stressful. I beat lupus to it and take some prednisone (steroids). For years I avoided it and when I did get it.... it was the magic pill. Took all my pain away... then i wean myself off of them slowly to see if my lupus flare up still wants to fight. You can go nuts sometimes. it's a hard life and people don't "see" anything wrong with you. No one knows our pain but someone who has the same condition. Have to cancel engagements that are planned ahead because sometimes you just can't do it. Family and friends need to be educated. Even then, sometimes you sound like a broken record and just hide.
    My sister sent me this sight. I hope I can help by telling my story. Currently, I am on Plaquenil, Nortryptyline and sometimes steroids. i still feel pain, but I can tolerate it some days better than others.
    visit my blog and see how I indulge myself in my artwork.
    http://n1sunrider.blogspost.com
  • Hi
    For those suffering from Lupus and/or any other disease within the body, I'm with an organization call Kyani that have natural health supplements that will cure the body. For those interested in trying the product, please go to www.youtbe.com and watches Kyani testimonial on lupus and also the other related videos about how the product changes people lives everyday. For those interested in trying the product please email me at koreshian@yahoo.com

    Thanks
  • I have both as well and when I try to explain the pain to my doctors they don't understand. Tried lyrica and it didn't work for me.
  • @Jackie53 I pray that you will get better and your pain goes away.
  • Does everyone take Tylenol for pain or ibuprofen. I ask because my Dr gave me ibuprofen for inflammation.
  • I am a new member to this group. I joined because after reading a couple of the current member's stories I felt a connection. I feel like I do not have to ever share my personal story because I swear that the many I have read are my autobiography since Lupus, Fibro and Psoriatic Arthritis have become my constant companions beginning in 2008. Today is NOT a good day. I know that I am not the only one or have it worse than anyone else but today I feel so alone, confused, angry and sad. I look forward to learning more about these insidious diseases, to learn how to live with them better than I have been, learn to accept this deck of cards that have been dealt me, and I look forward to connecting with many of you over the days ahead. Here's to a better day tomorrow.
  • I do not have an aversion to trying natural. However, how would one transfer over from the current meds they are on to natural without going into withdrawal? That is something I have always wondered. @koreshian
  • I have SLE since 2000. Severe joint pain was my basic symptom but lifelong records of white cell count off and ANA positive led to the diagnosis. I was taking plaquenil for several years and then decided to ignore the SLE. Practically convinced myself I did not have it. Stopped seeing the rheumatologist. In 2009 I suddenly became ill- thought I had pneumonia- I had Pericarditis, Pericardial Effusion, Pleurisy, Pleural Effusion, high protein levels in urine and generally very ill. I was also diagnosed at that time with Fibro and Sjorgens. I was started on prednisone and methotrexate along with Cymbalta for the fibro. I struggled with all of this till the spring of 2014. In February I came down with the Flu and ended up hospitalized with pneumonia. I came home and was fed up with being ill. I gave up wheat and all artificial sweeteners. The results have been amazing. I am not sure which it is but can tell you when I "cheat" and eat the bread or cake...I get headaches, body aches, fatigue, allergy/sinus problems and brain fog. My doctor said my blood tests are a complete turn around. My Nephrologist does not want to see me for a year, same with my cardiologist and pulmonologist. I am down to 5MG every other day of prednisone and 12 mg of methotrexate a week. No more Cymbalta. I do take Tumeric- 4 tabs a day. It is a natural anti inflammatory. I still have to sleep a good 9 hours or more a night. I cannot physically do what I could once but have more great days now than I have since 2000. On this very site there is information about wheat and gluten having an effect on Lupus patients. I am proof that it does. Just started working on some weight loss, now that prednisone is down it is coming off slowly but surely.

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