Opinions Please!!!

Hi :)

I need everyones opinions & input but first let me fill you in on my family medical history with autoimmune disease as well as my own.

Family History:

Twin Sister: Eczema, Raynauds (Not severe), Erythema Nodosum

Grandfather: Protein C deficiency & Factor 5 Leiden Mutation "Sticky Blood" (Blood Clotting Disorder), Deep Vein Thrombosis.

Mother: Subacute Cutaneous Lupus (diagnosed @ 22), Protein C Deficiency & Factor 5 Leiden Mutation

Me: Protein C Deficiency & Factor 5 Leiden Mutation, Raynauds Phenomenon, Fibromyalgia, SLE per original rheumatologist.

Now that you have the background information here is my story and why I need your input.

My Symptoms in order:

It all started in October of 2013. I was diagnosed with severe Raynauds Phenomenon. Within a month of the Raynauds I started to be violently nauseous all the time, it was terrible. I also started to get outbreaks of sores in my mouth that would not go away. Some of the sores were similar to canker sores, but others were not painful and were similar to a fluid filled blister that would come and go constantly. I then started to get the sores in my nose. I started to have pain on the tops of my hands and feet (like in the joints on top). Upon that I started to get hives and not just the size of a mosquito bite, Im talking welts on a daily basis which was then diagnosed as Urticaria. Upon that I started constantly feeling like I had a hangover. Bad Bruising on legs & occasionally on arms. I then starting having really really bad arthritis-like pain especially in my knees. My knee caps especially when achy would barely bend and would always be bright red. Hive like rashes would appear more frequently if I was out in the sun. Numbness in arms landed me in the ER with diagnosis of peripheral neuropathy and eventually numbness in my temple area of my head which led to a diagnosis from the neurologist as "silent migranes" or "Spreading Depression of Leau" which has since caused me epileptic seizures. Diagnosis of costochondritis in March. I have intense insomnia. I only sleep 2 out of 7 nights a week. I then began to realize what everyone meant when the said "fatigued". There were times where walking from the car through the parking lot and into the store would have me so winded I wanted to pass out. Reaching for a can of soup in the pantry was so overwhelming I would have to break down in tears. Somedays I have to take naps just for taking a shower and don't even get me started on trying to pull a shirt over my head. Getting dressed is like running a marathon. Then in March of 2014 all of my symptoms were activated at the same time. It was so bad I couldn't get out of bed to walk myself to the bathroom! I have never felt so helpless in my life, it was very scary. Since then I have had about 9 similar episodes. It is now October so a year later and I have developed the typical "discoid" circular, raised red rashes all over my arms and a few on my face.

My Sticky Situation:

I started seeing a Rheumatologist in January of 2013. My family & I suspected Lupus because all of my symptoms were mimicking the disease. However, after multiple visits to the rheumatologist I felt constantly "poo-pood" and laughed at. This was mainly because I had a negative ANA even though I had enough physical symptoms at that time to gain a diagnosis. One day in March I had overnight developed shallow breathing and sever pain in my chest, shoulders, and arms. My general doctor insisted I go to the emergency room immediately however my mom having Lupus and being personally familiar with pleurisy suggested we try to get in to the rheumatologist first. The rheumatologist walked in took one listen to my chest and gave me the diagnosis of Costochondritis. She then said I believe you have SLE and placed me on Plaquenil 200mg, Prednisone 5mg, & a nice fat steroid shot. About a month later I was completely debilitated. I was laying in fetal position in bed because the pain was so unreal. I could not walk and could barely move in bed. The rheumy called me in a Medrol pack which immediately helped. I have since switched to a new rheumy who ruled out everything from the old rheumy bc she wanted to start from scratch and do some more intense testing. Based on some physical symptoms the new rheumy diagnosed me with Firbromyalgia and has been treating me for that as of now. The results from the intense testing came back and my ANA is not negative but rather a low positive. She said that even thought my ANA is showing positive I was missing the positives for the inflammation portion of the test. She did not want to rule out the Lupus diagnosis but is sure I have Fibro and is treating me for that as of now until I come in in October for her to go over my results in person and we would discuss the Lupus diagnosis and the plan of action.

I have not had my apt yet and since seeing the new doctor who overall I feel is a good doctor and is more thorough than the old doctor I have stopped all steroids but stayed on the plaquenil. Since stopping the steroids almost 2 months ago I not only feel worse but have developed more and more new symptoms. I don't understand. I thought that the ANA was just a "screening" not a diagnosis and now that it finally is showing positive just because I didn't pass on the inflammation portion that rules me out? If I don't have inflammation then why the heck do my knees hurt so bad on some days I cant walk and why are the knee caps bright red?! Isnt redness a sign of inflammation? I just don't understand... I now have a positive ANA and 11 out of 11 criteria to attain a diagnosis. I don't understand why it takes so long for people to get treatment!

Have any of you had similar problems? Do any of you have blood clotting disorders with Lupus, if so how has your journey been? Do any of you with Fibromyalgia have Lupus, if so how has your journey been? This all just seems like a terrible nightmare that I cant wake up from!! Im just trying to feel better.

Thank you for your input! :)

4 Replies

  • Hi PThree,

    Welcome to the forum!

    I'm really glad you've got family members around you that understand what you're going though because it sounds like you're really going through the mill at the moment!

    You will find a lot of us on here have clotting issues as well a some flavour of lupus. Mine is antiphospholipid syndrome or APS (also known as Hughes Syndrome, sticky blood syndrome, sludge blood, antiphospholipid antibody syndrome...)

    I was unusually 'lucky' in that I had a 'catastrophic' event in my mid 20's (PE's over both lungs) which led to fairly rapid diagnosis (well within 9 months from that event).

    I'm now starting to develop symptoms of other conditions, like fibromyalgia, which I'm currently just managing with lifestyle changes. Should be seeing the rheumatologist before Christmas to discuss hopefully!

    You'll nearly always find people on here who have had similar experiences and can offer advice and/or sympathy.

    I hope you have much easier time with your new rheumatologist and they manage to get you on a decent treatment plan soon.

    Take care,

    Jo jo

  • Omg I'm so sorry to hear that, that must have been terrifying! Your response has answered so many questions for me you have no idea lol I never knew that APS or HUGHES was what my grandfather & great grandmother referred to as "sticky blood". Very interesting. Thanks so much for your response!

    Btw if your somewhat new to Fibro a medicine that has been a lifesaver for me is Lyrica and I don't feel completely "zombied" out from it. Best of luck to you!!

  • Hi there! I feel your pain! I to suddenly became ill October 2013 with the sudden onset of raynauds, then stomach and gut issues and dramatic weightless. Then joint stiffness and pain, then sores on my hands feet, burst blood vessels, rashes all over my face and hands, extreme fatigue and weakness! I can't even stand on the shower and have to take intervals to do the slightest things. I also can't walk far and fall for no reason. I have had to change my car to automatic because I can't shift the gears or pull up the hand brake. And so the list continues......

    My gp referred me immediately to a rheumy. My initial appt lead the consultant to believe I have RA as I have I strong family history. All came back negative, then probable diagnosis was scleroderma but my internal organs are doing fine (thank goodness). I continued to get worse and although my ANA is negative and my ESR is within normal ranges I have been diagnosed with; undifferentiated connective tissue disease consisting of scleroderma with an overlap of lupus, raynauds, b12 deficiency and secondary fibromyalgia. So far I am responding well to hydroxychloroquine and Amytriptoline and a couple of other pills. I am finding acupuncture is helping with my fibromyalgia.

    I found keeping a health diary, taking photos of my physical symptoms and taking my hubby to appointments helped push a diagnosis.

    It is such a long road, some days I think I'm going mad, that no one takes me seriously and that I'm destined to be like this forever :( but , it is a struggle and the more we support each other and take control of our illness rather than the other way round then positivity seems to creep in.

    Stay strong my lovely. I wish you good health and recovery. Xx

  • Are we twins or something??? All sounds too familiar...unfortunately. I haven't tried acupuncture as Im somewhat new to Fibromyalgia but rheumy strongly advises me to give it a try. Good to know it worked for you! Maybe Ill take the rheumys advice now that I know it helps some people. I also responded well to hydroxychloroquine at least with the mouth sores and that daunting hangover feeling. Thanks for your input, Ill definitely give acupuncture a chance!

    You stay strong too, best of luck to you on this journey. We are given these battles because we are so so strong :)

You may also like...