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Thread: Please help!

  1. #1
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    Default Please help!

    I'm yet to have a diagnosis but have had several possibilities thrown at me. One being lupus, the others being mctd, fibromyalgia and chronic pain syndrome. It's proving frustrating. I am 32 and I have had symptoms on and off for 6 years. Started with shoulder pain, muscles weakness, aches, spontaneous subcutaneous emphysema, cervical lymphadenopathy and extreme fatigue with a positive ANA of 1 1280 speckled. I remember being unable to work for awhile and then it just improved. Was taking NSAIDS.

    Briefly after this episode i started to suffer with muscle and joint pain with one episode of a petechial rash over my legs when using SPF 8 instead of 30. At the time i had joint pain and fatigue. I had loads of nurofen and eventually improved after a month. My ANA was 1 640 speckled so my doc did an ENA panel which was neg. CRP ESR complement all normal. A rheum recommended seeing a psych. I was disappointed with his attitude and avoided docs alot after this.

    This however has been my worst year in 6 years. I feel i have to get to the bottom of things as it's gone beyond the boundary of it just being minor ailments that just happen to people. I have had multiple chest infections this year and have struggled with fatigue, weight loss and occasional flu aches and hypertension. During one of the chest infections i had prednisolone and felt fabulous. After 6 weeks though I started to have shoulder and neck muscle pain. I recently went on a holiday to a humid/sunny place and developed, wrist/hand and ankle joint aches. Sharp stabbing chest pain, flu like symptoms, hair loss, the usual fatigue with a week of brain fog. Yet again positive ANA 1 160 speckled with ENA negative and anti dsdna neg. CRP is elevated at 17. ESR normal as is complement. I am slightly anemic which i find unusual given my meat intake. At one stage i had protein+ and mild trace blood in a urinalysis with elevated urea but this resolved and renal ultrasound was normal.

    I am 3 weeks away from seeing a Rheum and am afraid of being fobbed off... again. I also dread the "chronic pain syndrome" diagnosis and a referral to a psych etc. I suspect an auto-immune problem.

    Is it possible to have a positive CRP, ANA in fibro or chronic pain?
    Are any of my symptoms likely in fibro or chronic pain?

    I also have a history of severe PE in pregnancy with hemolysis, thrombocytopenia abnormal LFT's. The placenta was infarcting and my baby was born IUGR. I was brain fogged for a long time after this pregnancy but put it down to mag sulphate and baby brain. Second pregnancy i had mild PE with my second bub being small for gestational age. Post-partum i had a moderate case of Urticaria with my CRP over 200 with normal WCC. I had flu like symptoms/joint aches and chest pain. This has also made me suspect something else. I went on Prednisolone for 2 weeks to get rid of the urticaria and felt the best i had in years. I would have thought if it was fibro that pred would not help symptoms.

    If you managed to read all this thanks so much and any input would be greatly appreciated. I'm frustrated beyond words and just don't know what to do next. Thanks again in advance.

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    A lot of this sounds familiar to me, and I'm sure that you will hear from others that will say the same. You know your own body, and you should follow your hunches. Read through the threads on this board, especially the stickys, and join in some of the discussions with your questions. Do a lot of research and then seek out a rheumy that you feel comfortable with. Don't take the old "psychological" thing for an answer.
    Good luck,
    Marla

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    Default hi

    Yes all that sounds very familiar to me also.Im sorry you are going through all this but many members will identify.
    Last Christmas i was diagnosed with Lupus before blood results came back.They came back and Rheumi changed his story and said its M.E (Myalgic Encepholitis)i think thats how its spelt or otherwise known as Chronic Fatigue syndrome.I went mad at him.
    I too had a P,E since then had major jaw problems,missed last christmas as was in hospital with lock jaw and lost some teeth cause of it.Now i'm diagnosed with Fibromyalgia,Srogrens,Reynards, IBS, TMJ,Acid reflux,have joint ache n swellings,very fatigued,insomnia,bad depression n anxiety attacks,hair loss.Being tested for Lupus again and so sick of not getting a proper diagnosis,but will carry on fighting like you should.Im sorry you are going through all this but hope the doc has given you meds to help.After a long fight been on Plaquenil since September.Waiting for it to work,but think it is working without me realising as i didnt take it for 3 days did feel a little difference for the worst.Just hang in there....keep fighting and maybe find a better rheumi or doctor....i have a few times.We are all here for you.

    Lots of love
    Amanda.xxxxx

    When i first got sick in 2004 i was told i had a nervous breakdown See how me fighting has now found out so many other diagnosis's.So you keep going we will help you.xxxxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    Thank you Marla and Amanda for your replies. I'm sorry that anyone should have familiar symptoms to what i am experiencing as i feel terrible. So far my doctor refuses to medicate me until i have a formal diagnosis from a Rheumy. I only take over the counter ibuprofen and paracetamol. It's difficult as i don't see a diagnosis happening anytime soon. Every doctor i have seen has a different opinion. One says fibro, two say autoimmune either lupus, mctd etc, one says chronic pain. I'm happy to remain undiagnosed if the doctors can control the frequency of flares and pain i experience but they refuse to prescribe meds to control anything. Thanks again for your support. I no longer feel alone.

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    Oh puzzled...((((Hugs)))) I hear ya...I'd be happy with just treatment and control. I have a good pcp but there's only so much she can do for me and what she has tried hasn't helped. But at least she has tried. The other three rheumy's I've seen could have cared less that I am in pain. I can wait on a dx if it means I can wait with control of this misery. At least some control.

    Labs can say a lot of things and not say anything. I've been looking into the reliability of the tests and finding out lots of interesting things.

    I also suspect you have an AI disorder. I hope your next rheumy appt gives you some comfort. Please let us know how it goes, okay?

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    Hi Puzzled,
    I am puzzled too!
    It sure sounds like AI to me. I am in the not quite diagnosed stage too, but I have found a rheumy who will work with me and treat symptoms, so at least there is that.
    The thing to remember is that you are not alone. And that there are doctors out there that care and will help you, or find someone who can. But you have to be strong! Educate yourself continually about the AI's and your symptoms, your family history, etc. Maybe try keeping a symptom journal?
    Good luck and God Bless!!
    Deb
    God Bless,
    Deb
    "You do not have a soul. You are a soul. You have a body." C.S. Lewis


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    Although I don't have as much dx information like everyone else, I've been waiting for 15 years to be diagnosed with lupus after getting DIL (Drug Induced Lupus) back in 1994, only to find a doctor willing to help me out. Then I find out that my records from my last dx for Lupus 10 years ago have been destroyed. Go figure. What I do know about Lupus without a dx is that it is usually followed with fatigue, mind fog, etc. Of course, I don't like doctors either. I haven't even been given 'chronic pain' referrals and I'm past due to taking another ANA test. Although this wasn't much help and seems more like a rant (and I'm sorry for that), what I've been trying to get at (and not doing a good job of it) is that you should keep suspecting different things and remember that it could always get worse. I agree with bunnie on the Journal, and would suggest that you make it detailed. This way you can see even the slightest of changes.

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    Perseverance is a must as you pursue a diagnosis. There are many people on the forum who are very knowledgeable about all of the tests involved and what they mean. The "sticky" sections at the top of each section have been very helpful to me about lab stuff when I was getting diagnosed.

    Welcome to WHL!

  9. #9
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    Puzzled, as you have read previously in this post there are a lot of us that can sympithize with you, I went around and around with the doc's for a couple of years( yes,no, you have depression, see the psych) when asked if I was depressed I answered of course I'm depressed, I am sick and tired of being sick and tired!! It took me ending up in the hospital for six days to recieve a diagnosis and its been a long haul and still working on adjusting precriptions. My current rheumy is the only one that got the diagnosis correct, he told me before the hospital visit that he was 99% possitive that I had lupus, he interned at one of the leading lupus clinics on the west coast, He is a good dr. and understands the issues. There are good dr's out there, just don't give up! We are here for you, why? Because We Have Lupus and we get it! Good luck and God bless. Jim.
    Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulations, that we may be able to comfort those who are in any trouble, with the comfort wich we ourselves are comforted by God. 2 Corinthians 1:3

  10. #10
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    Thank you all so much for your responses. It felt great to vent to people who understand what i am going through. Friends and family just don't get. Not because they don't want to but because on the outside i look fine. I'm dreading my Rheum appointment. At one point a few days ago i felt like canceling it as i felt fine apart from some residual wrist and shoulder pain. But yesterday was a bad day and i found myself realizing i have to do this.

    Jim I'm lucky i have escaped depression so far. I'm trying desperately not to let this get me down. It's getting harder though.

    I understand that lupus or any other CTD's are sometimes hard to diagnose, but if someone doesn't fit all the criteria but has the symptoms of an autoimmune condition i can't understand why they won't treat it as such. As far i know i fit the criteria for UCTD as i have had 2 (i have 5) positive ANA's and symptoms for three years (6 years for me). I know not all doctors i have seen agree with this (they think my ANA is a false positive and i that i have fibro - without any assessment for fibro) but i have had some doctors who agree that this is AI, that the ANA is positive, but that it's up to a rheumy to diagnose and medicate. So i remain untreated, in pain and frustrated. And i am so sick of blood tests.
    Thank you all again.

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