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Thread: Seeking support and direction - please help

  1. #11
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    Hi 4hugs to me that sounds like Dishydrotic Eczema. They form little blisters in cluster end up itching so bad that you tear them open and then they turn into ulcer sores on the palms of the hands and feet. I don't know if you get it on your feet, but you can. Sometimes you can get them on the palms of your hands and not your feet or the other way around. I get them on both my hands and feet. When the sores heal they do not leave permanent scars. The excema in itself, this type, leads one to believe that there is an Autoimmune problem going on. I have put into a post in here on what I have found out about Eczema, you know the type that I have. Let me go find that and I will put it in here for you to view ok.

    Dyshidrotic eczema is a type of eczema (dermatitis) of an unknown cause that is characterized by a pruritic vesicular eruption on the fingers, palms, and soles. The condition affects teenagers and adults and may be acute, recurrent, or chronic. A more appropriate term for this vesicular eruption is pompholyx, which means bubble. The clinical course of pompholyx can range from self-limited to chronic, severe, or debilitating. The condition's unresponsiveness to treatment can be frustrating for the patient and physician.
    Physical: Physical examination performed early in the course of the flare reveals small (ie, 1-2 mm), clear, deep-seated vesicles without erythema erupting on the lateral aspects of fingers, the central palm, and plantar surfaces. The vesicles have been described as resembling tapioca pudding. Eruptions are usually bilateral and symmetric. Patients treated later in the course of this disorder may have unroofed vesicles with inflamed bases, possibly accompanied by peeling or rings of scale or lichenification. Transverse furrows can develop on the nail when eruptions occur in the periungual area and/or nail matrix.

    Basically all that I could find out about this eczema is that mine is due to a faulty immune system. This is what my Rheumatologist told me. I think he said something about the inflammation and antibodies that are associated with the Lupus causes this to happen to me. My doctor put me on Imuran to decrease the severety of the flares from the Eczema. I also found that because I am very sunsensitive that the sun will cause the Eczema to break out worse too. I hope that my post here is not to confusing, but lupus itself isvery confusing and hard to deal with. Hugs, Kathleen
    Live one day at a time: It's easier that way

    Dx with SLE in 1994
    Dx with Sjogrens 1994
    Dishydrotic Eczema 1974
    Severe Osteo-Arthritis

    Meds:
    Imuran 125mg
    Plaquenil 400mg
    Sulindac (Clinoril) 400mg
    Soma prn up to 4 times a day
    Darvacet prn

  2. #12
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    HI sounds to me like you've got the early onset of lupus.

    I had all that before my dx. I was having all the signals of lupus like fatigue, fever, chest pain, joint pain, muscle stiffness, ect.... But also I had the fact taht my fingers and hands even my legs would feel jelloy.

    I found I coudn't pick up a pitcher of water or sometimes I'd pick up a plate and it would just fall out of my hands so plastic it was for me after. My legs would feel so weak and they would give out. My fingers and toes would be numb too. I hear this isn't to common in lupus.

    So I also had my ANA first negitive then it was barely positive they suspected lupus for quite a few years then finally it progressed and my ANA was very positive.

    So don't give up keep on keeping on and keep pressing the doctor to do more tests and such because that's the only way to get an answer.

    But you're not alone I was there too my RA was even negitive at first.

    take care nad I wish I could come over there and give you a big hug!!!!!!!!!!!!!!!!!!!!!!1
    Stefanie
    SLE Lupus. Fibro, IBS, RA\

    Matt's Brown Eyed Girl!

    "I'm not broken, I'm antique; a little worn out but still beautiful if not more so because of it."

  3. #13
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    Thank you all so much for your answers. I have not checked back in for about a week because I was adjusting to my nurse's last call. Keep in mind that, at the office I must go to due to insurance, I can only see a LPN until she grants me the permission to go on to a doctor. I hate this nurse. I was actually posting a reply to Kathleen last week saying, "Yes! That is EXACTLY the perfect description for the eczema I have on my hands and, yes, it is also on my feet!" It feels so good to find people who have the same "weird" things that I have been experiencing all alone.

    Well, in the middle of typing, my stupid nurse called and said that my labs were negative (except they are still waiting for a Lyme titer and they refuse to look at my "barely positive ANA" as such) and that she talked with the doctor and they don't feel it is systemic. Instead, I am supposed to accept that, simulataneously (and only after each of my pregnancies) I have contracted the following: rosacea, eczema, bursitis in my hip, costochondriasis, and epichondriasis, and possible a pinched nerve in my neck. All at the same time and coincidentally, they all get about 10 times worse if I contract a cold.

    I am so fed up. I told her that I was frustrated with her inability to see the forest for the trees and that I would not be returning, please cancel my appt. I also discontinued my Relafen and got rid of my scripts that she gave me for a different anti-inflam. and darvocet. I also dumped the wrist and elbow braces/splints. For the past week and half, I have been living, unmedicated, in complete denial. It's driving me insane. I have many of the experiences Stephanie described. This morning I reached into the cabinet above our stove and couldn't get a grasp on my recipe box and instead knocked a bottle of bubbles onto the stove where scambled eggs were cooking. My 7 yr old said, "Oh great! We're having bubbles in our eggs today!" I'm always dropping things and I noticed that I am having more trouble either not feeling my feet as much or with them feeling super-tingling, like they are asleep but it's when Im walking and really noticeable if I'm running. I also have this foogy brain thing going on with difficulties retrieving words - very unusual for me.

    But, it's not systemic.....I feel like a hypochodriac. Thanks for listening.

    4hugs

  4. #14
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    4Hugs is their any way that you can see a different doctor. I know you said that you have to go where your insurance will pay. I found that I had to go to a doctor and pay it all out of my pocket before I could get diagnosed. I know this is not fair at all. I could very well have died before I got dx. I don't want you to go through the same thing that I went through. The Dishydrotic Eczema can definitely be caused from the faulty immune system and inflammation. This is what I found out from my doctor, a Rheumatologist, and the internet. I feel really bad for you and boy do I understand how you feel. Where do you live at if you don't mind me asking? I am in Southern GA. I will pray for you and hope that you can get the answers as to what is going on with you.
    Hugs, Kathleen

    Live one day at a time: It's easier that way

    Dx with SLE in 1994
    Dx with Sjogrens 1994
    Dishydrotic Eczema 1974
    Severe Osteo-Arthritis

    Meds:
    Imuran 125mg
    Plaquenil 400mg
    Sulindac (Clinoril) 400mg
    Soma prn up to 4 times a day
    Darvacet prn

  5. #15
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    Thank you Kathleen. I am in WI. I'm sure the docs at this hospital are very good; however, since I cannot access them, it doesn't really matter. I appreciate all your advice and support. Today, I had to cancel shopping and rearrange my husband's day simply because I am so fatigued, achey, and foggy. I hate the fogginess - what causes that?!? I put the wrong words in sentences and my thinking is just generally sluggish. Anyways, we cannot afford to pay out of pocket.....maybe, I should check into it a bit more though....I think we only have to pay 20% out of pocket but with 4 kids thats still alot...

    I really do appreciate all the cyber hugs and support. In real life, I am a tremendously stubborn, do-it-all type of person who never admits weakness and never, never asks for help. Here, annonymously is the only place that I truly express my frustration and extent of my symptoms (although I did actually cry when discussing everything with that nurse, but then, what good did that do?!?!)

    4hugs

  6. #16
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    Hi 4hugs,

    I can understand the independant thing. I too am fiercely independant and downright stubborn. I got to the point where I flat out refused to see a doctor. I mean, I had become so disappointed and they would not listen to me. They would get sidetracked by the Eczema and decide that that was the culprit and would not even test me for Lupus and would tell me that I was worrying needlessly. It was totally unreal. To make a long story short my swearing off doctors and ignoring my symptoms nearly costed me my life 12 years ago. You have a right to medical care and to be listened to and not dismissed. I would make another appoointment immediately and demand to see the doctor and not a darned LPN. I mean you are paying a copay right. You could also ask for a referrel to a Rheumatologist. Another thought that you may consider is to contact your insurance agent and let them know that you are not getting adequate treatment and see if there is another doctor in your area that can see you. My husband had to get a different doctor as we have to see who our Tricare Provider tells us that we have to see. The doctor my husband was seeing sounds a lot like that nurse that you saw. He is a lot happier with the doctor that he sees now as he has gout etc. Let us know here how it goes. Please do not give up on the medical community as there are a lot of good doctors out there. I feel really bad for you and do know how you feel. Nobody should have to walk around sick as crap.

    The brain fog is common with Lupus. Your brain can become inflamed just like any other part of your body. I get this too, but the medications seems to help some.

    Hugs,
    Kathleen
    Live one day at a time: It's easier that way

    Dx with SLE in 1994
    Dx with Sjogrens 1994
    Dishydrotic Eczema 1974
    Severe Osteo-Arthritis

    Meds:
    Imuran 125mg
    Plaquenil 400mg
    Sulindac (Clinoril) 400mg
    Soma prn up to 4 times a day
    Darvacet prn

  7. #17
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    Hello 4hugs!

    I'm so sorry for the tough time you are having. Raising children and running a household is never easy, but it seems impossible when your body is on strike and you don't know why! I was just diagnosed 6 months ago, so I have fresh memories of how frustrating it can be.
    It was interesting for me to read about how you felt better during pregnancy and nursing, but had symptoms after weaning your children. I experienced that, as well. I had two kids where that happened and wondered if hormonal changes caused the difference in how I felt. Now I'm pregnant with #3 (the first after my diagnosis) and am feeling better than I have in a long time.
    I will pray that you can find a doctor that will take you seriously and order every test under the sun to figure out what is going on. But your symptoms sound very much like mine. Don't give up on all doctors. I've learned that for every dozen I see, maybe one will be the kind, sympathetic doctor I'm looking for. But remember, all you need is one doctor. Take care of your children the best you can and remember that all you can do is your best. Try not to over do it. Take care, my friend.
    Angie

  8. #18
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    As always, Kathleen, you are a great source of support. I will think seriously about what you posted.

    Angie, thank you for taking the time to post. It is always so relieving to find someone who has felt the same. I felt great during my pregnancies and pretty good while nursing, but right when I started to "nurse less" (not even completely wean) the same symptoms kick in. The nurse dismissed lupus partially for this reason saying people with lupus are worst when pregnant and better afterward (what?!?!). Thank you for validating my experience. I too have wondered if it is all "just hormones" and my dumb nurse actually brought a doctor in once to tell me that my chest pain when breathing was probably due to breast pain (after 10 months of bf-ing!) Duh.

    4hugs

  9. #19
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    From what I've read and what doctors have told me, women either get better or worse during pregnancy. Every woman is different. At least you had a few short periods of better health!

  10. #20
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    I think that you can insist on seeing an actual doctor instead of a nurse. If you do have a sympathetic general practioner, you may be able to talk to him/her about getting you a referal and having the GP doc insist that you see the actual doctor. Then when you make the appointment, be sure they are aware that the GP wanted you to see the doctor not the nurse. No matter what, it is important that you do whatever you need to do to take care of you. There are 4 really good resons for that. And, nope the medical community is not going to notice or care if you just drop out of sight. Good luck with your continuing quest for answers.

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