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Thread: Hi I am frustrated and not sure what is going on.

  1. #1
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    Default Hi I am frustrated and not sure what is going on.

    Ok well, I am a 24 year old mother of a two year old little boy. I have had swelling in my joints since around age 13, a rash that comes and goes and itches which covers only my chest, stomach and arms (especially bad after being in sun or tanning), one lymph node removed around age 12 and one that still to this day changes sizes and causes headaches and hurts to the touch (I was told as long as it bothers me it isn't anything serious -??), have struggled with bouts of fatigue and been tested several times through the years for "the kissing disease" (I am totally having a brain fart and can't think of the name) which has always been negative. So here's where it gets interesting... I began using heroin at age 15 and just got put on Suboxone in May of this year, the Dr. I had been seeing for my addiction was also my PCP. I told him about all the pain I have been having (some days I can't even drive because my hands cramp up and swell so bad). So he put me on a series of NSAIDS, none of which helped. He also sent me for some blood tests which included an ANA. The ANA came back positive at 1:32 homogenous, I had two different blood count test which were irregular (LYM & SEG) one was high and one was low although I don't have my paperwork in front of me so I don't know which was what. Then my husband got a new job so we moved to OH. I had to start all over with a new addiction Dr. and go from there to get into a new Rhematologist. So I finally got a new PCP and he just kept telling me that I don't have RA which had previously ruled out. he then sent me to a pain specialist and a Rhematologist. So me being honest (and stupid) told them about my addiction and in turn they told me there was nothing they could do for me. I am pretty sure they thought I was trying to get drugs (PLEAE, why would I tell them I was an addict if that was the case?!!). The Rhematologist told me that a 1:32 homogenous doesn't make any sense, although everything I have researched on it tells me that is a common ratio for SLE. I am just so frustrated and don't know what to do or who to see next. I can't deal with the pain, every night I have to lay however my wrists are ok, I wake up from pain if my pillow touches my hands, each morning I can't walk for around 40 mins. because the top of my foot swells and can't have any pressure on it. So that's a little about me any ideas anyone has would be great. Thanks in advance

  2. #2
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    Hi Lizza,
    Welcome to the site. I think that it does sound like you may have Lupus. I think that you need to see a different Rheumatologist if that is possible. Did you mean that your ANA is 1:320 as that is a positive ANA result. The stiffness and soreness in your joints sounds as though it could be Lupus also. Have they done a kidney test on you for the swelling in your feet? It also sounds like you are very sun sensitive and that would go along with Lupus too. I don't know that much about the addiction, but I don't think that that would cause these symptoms. I seriously think you need to see a different Rheumatologist. I hope that you keep posting. There are others that will come in here to greet you as well and they may have information for you.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Gentle hugs to ya Lizza,

    Welcome to the site

    You were quite right to be honest with doctor's about your addiction history. Now you need to find a doctor with two clues to rub together who will work with you to get to the bottom of the pain issues.

    Go back to your family doctor. Let them know what happened at your last appointment and how frustrated you are.

    Tell them you need to see someone who is going work "with" you on your pain issues and who can be sensative to drug addiction issues as well.

    There are treatments out there that do not involve drugs that may cause you problems with addiction.

    Plaquenil being one of them. But they need to get to the source of your pain. It can take a while to figure it out.

    I am in my third year of trying to figure this all out. So far the only doctor on my side is my family doctor.

    NSAIDS do not work for every one. I did not respond well to them.

    I am currently on a combination of Arthrotec75 and plaquenil. So far so good. As I mentioned, I still do not have a diagnosis. Eventhough lupus and rheumatoid run in my family and I have have alot of the rashes and sensativities plus a couple of possitive ANA tests.

    Ask about a referal to physical therapy and about wrap around wrist supports.

    My feet , legs and knees swell badly. I wear diabetic compression socks when I first get up and a wrap around soft knee brace when I am working around the house or the yard or driving my car.

    Please feel free to ask what every you like, and we welcome whining and venting because we understand ... we're all in the same boat.
    Oh look ... a cookie

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    thank you all. And about my ANA the result simply said the test was positive at 1:40 and my "score" is 1:32. No zero at the end. I am just so tired of feeling this way. My husband just tells me I am whining if I say anything about my pain. I mean it is obvious that something isn't right when my hands which are normally tiny are three times there normal size. I still take care of everything I need to during a day, it just takes a little longer and hurts a lot, I don't know what he thinks I get out of saying I am in constant pain. It makes me so angry. I want to start online courses but there is no way at this point I could type for long periods. This small paragraph is taking forever! I appreciate all your remarks and I am trying to find a new Rhematologist. I see my addiction Dr. tomorrow so I am going to say something to him about my pain because this is getting old and I can't deal with it anymore. When I used I had pain but it was not nearly as bad, it was tolerable. NOT NOW! Thanks for letting me vent, I do appreciate it

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    OH YEAH... and my Rhematologist told me that because I don't get the butterfly rash on my face it can't be Lupus.. everything I read said that was not true. Anyone know anything more on that? I do get a bad itchy rash on my torso and arms but NEVER face, back or legs. Thanks in advance

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    Hi Lizza,
    I think that that Rheumatologist that told you that you could not have Lupus, because you do not present with a Butterfly Rash is full of crap big time. I know for years I did not have The butterfly or Malar rash and when it did appear I was at my sickest and darn near died. When the Lupus started attacking my heart muscle and my lungs is when the malar rash appeared. There are several folks that comes in here that have never had the malar rash on their faces. Rob one of our moderators has never had this rash on his face and he has severe lupus. I definitely do think that you need to get a different Rheumatologist, because that one you saw sounds like a real idiot with a capital I.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Gentle hugs to ya Lizza

    I agree with kathy, that rheumy is full of crap. I do have the blessed almight fricken butterfly rash, what I dont have is a stupid diagnosis.

    I've had the rash since I was 18 or 19 yrs old. Sigh any way... I hear ya on the pain thing.

    Every once in awhile hubby's knees will start to hurt him....ha....and pfft. At least for him the pain will be gone by the next day.

    When we go out grocery shopping I get him to grab the stuff that's on the lower shelves, cause it hurts too much for me to get it. Well he was sore today and I could tell he was hurting.

    So I asked him if he wanted to take turns getting stuff. He said he didn't want to mention it cause he was thinking "this is what it's like for her every single day"

    Finally .... he get's it.

    Don't think it really changes anything though. I don't get out of doing house work

    But it's nice to have it acknowledge that it takes a huge effort and tole on me to do half of what I used to do.
    Oh look ... a cookie

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    Also just another quick question... when my PCP sent me to a pain specialist (who kicked me out after telling him about my addiction issues) he sent me for a $600 bone scan. Does this make any sense because I feel that he was just trying to get me out of his office but make me feel like he was doing something for me. He even said and I quote "I'm sure it will be normal but if you want we can make another appointment to go over the results". It did end up being normal but after I asked the technician that was doing it what it was for exactly he said it just showed new bone growth due to damage. Why would they even bother having the test done? If anyone has any insight I'd appreciate it. Thanks

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    Oh yeah the pain Dr. did say that my bones creak way too much for a 23 (at the time) year old woman. I just remembered that when I stood up. LOL

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    Hi Lizza,
    I hear where you are comming from. It sounds like you need to find a different set of doctors big time. I had serious problems with the doctors for years and years. I would go to the doctors repeatedly only to be told that I was stressing and worrying needlessly and boy they would treat me like I was a hypochondriac. I even went so far as to see a Psychiatrist. I finally got a case of the Chickenpox at the age of 35 and that is when my health went right down hill on a slippery slope big time. I finally got a doctor to listen to me and test me for all the tests that he could think of for Lupus. It was a sad situation, because this doctor was right out of med school and just setting up his business, but shoot none of the other doctors in this stupid little hick town were taking any new patients. I am so greatful to this man for taking me as a patient and diagnosing the Lupus. He made it clear though that he did not want to be my doctor after diagnosing me, because he was scared and did not feel comfortable about treating anyone with Lupus. He sent me right to the Rheumatologist that I now see as both my Rheumatologist and Primary Care doctor. These two doctors basically saved my life for me. I sure hope that you can find some good doctors and quickly. I will be praying for you.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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