Rheumy appointment today

Discussion in 'The Watercooler' started by flutterbee, Jun 19, 2008.

  1. flutterbee

    flutterbee Guest

    Simply put, I cannot live like this anymore. I am in too much pain and the pain, weakness and fatigue are simply too debilitating. I understand that I don't have a diagnosis yet and that makes it worse. We at least need to start treating some symptoms. Other than 500mg Naproxen twice a day (which does not a damn thing for the pain) and the occasional steroid taper, nothing is being treated and I am getting worse by the day.

    Something has got to give. I am a single parent and I can't financially support my family right now. And now my daughter is really suffering and I NEED to be able to be there for her.

    So today, I lay it out with the doctor. I am no longer willing to do weeks in between each appointment without a diagnosis and/or treatment. This has been going on for far too long and we've had several doctors in the picture. I don't care if they don't know what it is. Try something. Treat the symptoms. Just do something.

    Wish me luck.
  2. meowbunny

    meowbunny New Member

    Crossing fingers and lighting a candle. At least you now have a doctor that does listen. That's a good start.
  3. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Rattling beads and saying a prayer.:angel2:
  4. susiestar

    susiestar Roll With It

    What did the doctor say?? I am going to PM you.

  5. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Heather I understand exactly what you are going through and even when you get a supposed diagnosis it doesnt get any better.

    I walked into my doctors office the other day almost in tears because the pain was so bad and he asked me how I was doing. I told him my legs were killing me. His answer was "Ok, yeah." It was like no S sherlock...your legs, back...whatever are going to hurt...what do you expect...you are sick! He told me that he would be surprised if I wasnt in pain. Wonderful...now...what can we do to help me. Well...not a whole lot except palliative care even though I feel like I am losing my mind and my ability to function. No answers to anything. Just muster along as long as you can basically.

    It is awful. As the patient you research and hope and beg for some treatment. Maybe you will find something that will help for a time. People have gone into remissions for quite long periods of time.
  6. Tiapet

    Tiapet Old Hand

    Heather I feel your pain. I went like that for 12 years before finding answers or treatment. Speak loud and don't stop! I do hope they do something.

    These days even with the care and treatment I have things are progressing at the speed of light it seems and I'm getting worse. I suppose it's the stress (as we all know that stress is a major component of some of these diagnosis's) that's causing it but quite honestly my gut tells me they still are missing something. I keep pushing and you should too.

    Pain is debilitating on the mind, the body and the soul. Don't let it defeat you!
  7. totoro

    totoro Mom? What's a GFG?

    I hope HE LISTENS! With husband getting worse and our family doctor who is wonderful finally told us his issues are beyond her scope of expertise. Which scared him and made him realize just how bad it had gotten.
    I see how much pain he is in. I just don't get why these doctors will not do more?
    Like I said in the Healthy Living Forum, we are starting with the Anti-Inflammatory diet and then going from there. husband has had lots of issues with the steroids and Gout medications. He hasn't even gotten into the serious ones yet!
    I just hope we can find a good Rhuemy... Tucson is supposed to be the land to go to for Fibro and all things Arthritic and inflammatory!

    I hope you brought your sleeping bag and tent and set it up in his office...
  8. Genny

    Genny Worlds Best Nana

    I hope you got him to listen! Let us know how it went.

  9. witzend

    witzend Well-Known Member

    Fingers crossed...
  10. flutterbee

    flutterbee Guest

    Well, today was the biggest freakin' disaster.

    To start, I didn't sleep a wink last night. The only parts of my body that don't hurt are my left arm and left hip. Literally. Every other part of my body hurts to some degree.

    Just before I left, I went to mapquest the directions to the facility. My mom drove me last time and I am not at all familiar with University Hospital. For some stupid reason, my computer was acting up even though I had been on it just 30 minutes prior and hadn't shut it down and I couldn't get anything to work.

    So, I call my mom and ask her for directions. And in typical 'my mom' fashion, she starts with too much information. I cannot process that anymore. It becomes too much and I either can't remember any of it or I remember the wrong parts. I told her I just need simple directions. What exit do I get off, which way do I turn. So, she's telling me and then she tells me that I after I turn onto ABC Street, I'm going to make a left at a major intersection. She can't remember the street name, 'but you'll recognize it', she says. No, mom, I won't. Yes, you will you were just there. Mom, Cognitive Disorder, not otherwise specified with amnestic features...no, I won't. Oh, yes you will. ARGH!!! She finally did remember the street name which is good because I didn't recognize it at all. I might as well have been picked up and set down in another country. I don't know why she refuses to understand some of these things, but it frustrates me to no end. Does she think I'm making it up?

    I get there. My appointment is at 9. I don't see the doctor until almost 10. And he tells me that he has good news, blood work is all normal there is nothing wrong with me. I started to cry. He said, 'Well, you don't want to have something autoimmune or rheumatic.' I said, I don't care what it is I just want it treated. He said there is nothing he can do, the blood work is normal. What about the bursitis in my hip, shoulder, knees..what is causing that? Well, he doesn't know, but it happens sometimes. (For no reason???!!!) What about the swelling in my right arm and hand and the weakness in my grip? Well, you should talk to the neurologist about that and he can do some tests (did he even read the records I brought???). I did talk to him about that, he did an EMG and everything is normal. Well, what does he think is causing it then? He thinks it's connective tissue. Well, it's not connective tissue...I don't know what you want me to tell you. So, I showed him pictures of me before I got sick and even from 2 years ago when I was sick with heart disease. He was like, wow, look at you. I said, no, look at me now. This isn't me. He said I should try another NSAID. If I don't have any inflammation, why does everyone want to put me on effin anti-inflammatories??? So, he said I should probably see an endocrinologist and probably someone for pain management and he doesn't think he needs to see me again.

    I got out to my car and was just sobbing. The kind where you can't breathe. I was going to go to my mom's but I couldn't figure out how to get on 315 South from that stupid area, so I had to go north and then turn around. Of course, I'm still crying and am probably pretty lucky that I didn't get into an accident or two.

    I get to my mom's and as I'm preparing to pull into the driveway I hear a *crunch*. You have GOT to be **kidding me! (Yes, I said that out loud.) I get out of the car and today was garbage pickup and there was a glass salad bottle dressing in the road and I ran over it. Clean that up. Check the tires for punctures. Tell my mom what happened and cry some more.

    I took my car in Monday because it was still acting up and they said there wasn't really anything they could find wrong. Said there was minimal play in the ball joints, but nothing that warranted a repair. Well, it was definitely an issue. So, my mom followed me up and it was vibrating so bad that I pulled off the highway at one point to make sure I didn't have a flat tire.

    Get it to the mechanic and tell them that my alignment is already out again, that if I hit a bump, turn or take my foot off the break it squeaks and squeals and clinks and clanks and vibrates the teeth out of your mouth. They look at it again. There are two lower support brackets under the cradle that holds the engine in. One is rusted through. Only one is holding my engine up right now. To fix that plus go ahead and do the ball joints.....$2300.00. And I'm not working. Thank God for mom and her credit card. It's probably not worth putting that much money into my car, but the engine is sound and I'd never get another dependable car for $2300.00 so what am I gonna do?

    Oh, and my child support that is deposited into my account every Wednesday isn't here this week. It hasn't even been received yet by CSE.

    You know what? I am so **done. I don't think I give a flying flip about anything.

    Just like I knew there was something wrong with my car and just like I knew there was something wrong before the heart attack, I *KNOW* there is something wrong with me now. But, while these guys get to go home at night and feel good and sleep well, I'm living with this **** and no one seems to have any **sense of urgency about it.

    I can't stand it. I've hit my limit. I am so **done. Seriously. I cannot take one more thing.
  11. meowbunny

    meowbunny New Member

    Oh, hon, I'm so sorry. If I could, I'd take your pain. I wish I could wave a wand and make everything better. You don't deserve this.

    I hope tomorrow is better. For today, cry, vent, rail, throw things -- whatever gives you some relief. Another nice, hot bath?

    On Monday, start making plans where you're going from here -- whom to call, what tests might give an answer, whatever you need to do to get some relief. Any chance you could go to the Mayo Clinic? I understand they just test for everything at once and then do their best to come to some conclusions.

    For now, gentle hugs and arms to hold you as you cry.
  12. flutterbee

    flutterbee Guest

    You know what? At this moment, I honestly don't give a ****. It took a major event before anyone would listen before and I've just resigned myself to living with this until another major event comes along. Oh bleepin well. I can't make myself care right now.
  13. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Heather...I get it.
  14. 4sumrzn

    4sumrzn New Member

    I'm so very sorry for your pain & no answers as to what is causing it. Many {{hugs}}
  15. Tiapet

    Tiapet Old Hand

    I also....soooo get it! :(

    Is there any chance, ANY chance you can take all your records and go to a major facility (someone suggested Mayo) but somewhere, and set up a slew of appointments for a second opinion? When I was at where you were I did exactly that. I took all my records and went down to John Hopkins (as a starting point anyway) and from there worked my way. I know you want to give up and I did too.
  16. amazeofgrace

    amazeofgrace New Member

    <gentle hugs> and prayers that you would find some rest from this pain soon.

    Have you gone to a acupunturist? I have a friend who had a similar mystery diagnosis and it helped her find some relief for a while.
  17. susiestar

    susiestar Roll With It


    I understand how you feel. I am so sorry you feel this way. And I want to strangle that idiotic insensitive idiot who thinks he is a doctor.


  18. Lothlorien

    Lothlorien Active Member Staff Member

    I'm sure I've asked this a dozen times and you've probably answered....but have you had a spinal tap test for Lyme's? A spinal tap is the only true way of finding Lyme's. The more progressive this gets, the more and more it sounds like Lymes.

    I'll ask what hospital a girl we knew went to. Docs had no idea what she had until she almost died, several times. She was finally diagnosis'd a year later with this rare blood disorder. It was at a hospital in NY. I'll see some other people who knew her, tomorrow. (She moved away about two years ago, to be closer to family and the the hospital up there, because she is still going for treatments. I'll ask if they know what hospital she was going to.
  19. witzend

    witzend Well-Known Member

    I'm so sorry, Heather. I've seen a lot of physiatrists and neurologists and other "ists" in my time. For me, we did find out that what I have is untreatable, and there are some things that can help relieve the pain. It's especially hard for you because you are single, and can't realistically nag a husband to help you.

    Is there any way that you could get your mom to help out with housework, either by helping herself or having someone come in once a week or two to do the heavy stuff? The sweeping and vacuuming and mopping is killer, and it would be very helpful to you if someone would do that for you.

    I would also consider going back to your good old GP. That's where I have gotten the most help for me. He's the one that talks to Social Security, prescribes me pain medications, makes sure I am doing gentle stretching exercises that help keep me less tight. He might also be able to help you get referrals for help with ADLs for yourself.

    I know you want to know what it is so that it can be treated. But not every disease can be treated. Maybe you can only treat the symptoms, even if you know what it is. That is how my muscular dystrophy is. "No treatment, no cure." Once I started looking past the idea that I was ever going to get better, it was less difficult to find things that made my life better.

    Do you have grab bars in your bath and near the toilet? It would be easier for you to soak in the tub if you could easily pull yourself out of it. Any little thing that lightens your load makes life a little easier for the next thing that you have to do.

    {{{{{{{{{{{{Big hugs}}}}}}}}}}}
  20. tryinghard

    tryinghard New Member


    I get it too...and I am sorry because I understand how you feel. I think I have Fibromyalgia. All my tests came back clear (For MS and other things) even though I was thankful I was disappointed that no one can tell me what is wrong. I have stopped telling the doctor how I feel. I just deal with it.

    I wish I had a magic answer for you....but I can send my support and let you know I understand....

    A friend who hurt all over, use to use TheraFlu. She said it would make her body feel better...