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Thread: Please help, I'm completely lost and in pain

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    Unhappy Please help, I'm completely lost and in pain

    I really need some input on where to turn for help with my pain, along with how to get that help.

    Has anyone else had any difficulty getting help from their rheumitologist for their pain.

    First, allow me to explain what has been going on. I was diagnosed with Rhupus by my rheumitologist with my main complaint being extreme joint pain, mainly with my hands. They are extremely swollen, all the way to my forearm, and in constant pain. Most of the time I'm able to suck it up and live with the pain, but the past week the pain and swelling has gotten unbearable. I'm waking up a minimum of 20 times a night from the pain. Monday, I was unable to sleep at all and had to resort to taking 2 hydrocodone (prescribed by my PCP a few months back) every 4 hours. The pain was still there and I was unable to get rest during the day. Finally around 2am Tuesday morning I had to take an ambien along with 2 tylenol PMs to knock myself out because I was physically and emotionally exhausted.

    Tuesday afternoon, I called my rheumy and recieved their voice mail, so I left a detailed message that I needed Dr. "X" or his nurse to call me back and explained that I was in pain and needed help with what to do. Wednesday afternoon, I still hadn't heard from my Dr. or his nurse so I called again, was told that he was in clinic, but they would take a message for me and make sure that he got it. I gave her a detailed message and explained everything that was going on, along with all the meds I had to take just to get some type of relief or sleep. Here we are Thursday and I still haven't heard from him or a nurse, so I called my primary doctor. Her nurse called me back within 10 minutes. I explained to her what was going on with me, and that I had waited in contacting them because I thought for this symptom it would be best to go to my rheumitologist. She agreed, but said since I'm obviously getting nowhere with them, they would fit me into the schedule for Monday so I might be able to get some assistance from my primary doc. I have tried everything I can think of to get some relief, hot compresses/cold compresses, soaking my hands in the hot tub, massages, wrapping them tightly in warm ace wraps, taking hydrocodone....

    When the rheumitologist diagnosed me, he started me on:
    20mg Celexa for chronic pain
    20mg Elavil for sleep
    400mg plaquenil
    7.5mg methotrexate once a week

    Obviously the celexa isn't helping with the pain, nor is the elavil for sleep. I'm desperate for any advice, please. I feel so lost right now, I don't want to seem pushy with my doctors but I really need help. It's not like this is a new symptom, this doctor has known about the pain and swelling from my first appointment with him Am I out of line, or wrong to expect a return phone call from my doctor for this? What would you suggest I do to get the help with my pain, from my doctors?
    "When life gives you lemons... search for the vodka"

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    STacy...

    If it was me...I would go to the ER and I would seek out another Rheumatologist.

    You shouldn't have to suck it up..the pain.

    I would ask for Lunesta..sleep aid...knocks me out in 10 minutes...zoom, gone..snoring. I've used Elavil.. Elavil isn't really a 'sleep aid ' per se. It is an antidepressants, usually used for its sedating affect along with Flexeril and an anti-inflammatory for fibromyalgia. But it can be used alone. Lack of sleep also magnifies the pain.

    Celexa is also an anti-depressant. I hadn't read after a quick research that it is used off label for pain....but that doesn't mean it isn't.

    I wonder why you are not on any additional anti-inflammatories...Hydrocodone is vicodin.

    Had you did any activity before the onset?

    Do you have carpal tunnel? Is it nerve, muscle or joint pain?

    Plaquenil reduces joint pain, but it still breaks through and it does also with MTX.

    Do you have any rashes associated with this pain and swelling..an allergic reaction since it is in your extremeties?

    Home remedy..elavate them. Can you lay on your back and rest them across your chest...or while on your back...raise them up and over your head and pillow and rest them there.

    I get terrible arm and hand pain during the night and those two home remedies lessen my pain and swelling...though my swelling isn't as severe as your's is.

    Are your ankles swollen? Issues with edema...kidneys?

    Again, just go to the ER...

    Hope you find relief soon...
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

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    Oh bless your heart...and your whole body! ((((Hugs)))) Oluwa covered everything and then some that I was thinking of asking. I agree with her. That's a crappy rheumy. I've fired docs over things like that. I only call when I really need my doctor's help and if I have to wait more than a day or two, that's unacceptable. Sometimes it's the doc's fault, sometimes it's the office, sometimes both... none of that really matters though when you need to talk to your doctor.

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    Stacy,

    I am in 100% in agreement with Oluwa. Go to the ER, and fire your indifferent, non-caring Rheumo. There are meds just sitting there at the pharmacy that could give you the relief you need right now. You are left hanging on the phone, in pain, with no meds, and that is unacceptable. You don't have to take this. I hope you can find a Dr./Rheumo who will help you and prescribe some effective pain meds ASAP.

    Rob

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    Sorry you hurt. i agree with oluwa, she gave you great advice take it. get to er now.
    Keep Smiling

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    F**k...opps I mean forget your Rheumy that you currently have. Find someone new but in the meantime go to emergency and make sure you are the loudest and in the most pain so they can see you first. WHY WAIT!!! There is no way you should have to wait a week to see any doctor when you CLEARLY stated you were in pain and suffering. That is the most inconsiderate thing I have read...well almost. You need relief yesterday.

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    Stacy,
    Sorry to hear this. I had an issue like this last month with my legs it was incredibly uncomfortable. I agree with Oluwa. You should not have to be in pain like that. I would suggest that you take some OTC NSAID, like Advil, if you can, to help bring down that swelling and alleviate the pain and if that doesn't do it, go to the ER.
    Sandy
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    Quote Originally Posted by Oluwa View Post
    STacy...

    If it was me...I would go to the ER and I would seek out another Rheumatologist.

    You shouldn't have to suck it up..the pain.

    I would ask for Lunesta..sleep aid...knocks me out in 10 minutes...zoom, gone..snoring. I've used Elavil.. Elavil isn't really a 'sleep aid ' per se. It is an antidepressants, usually used for its sedating affect along with Flexeril and an anti-inflammatory for fibromyalgia. But it can be used alone. Lack of sleep also magnifies the pain.

    Celexa is also an anti-depressant. I hadn't read after a quick research that it is used off label for pain....but that doesn't mean it isn't.

    I wonder why you are not on any additional anti-inflammatories...Hydrocodone is vicodin.

    Had you did any activity before the onset?

    Do you have carpal tunnel? Is it nerve, muscle or joint pain?

    Plaquenil reduces joint pain, but it still breaks through and it does also with MTX.

    Do you have any rashes associated with this pain and swelling..an allergic reaction since it is in your extremeties?

    Home remedy..elavate them. Can you lay on your back and rest them across your chest...or while on your back...raise them up and over your head and pillow and rest them there.

    I get terrible arm and hand pain during the night and those two home remedies lessen my pain and swelling...though my swelling isn't as severe as your's is.

    Are your ankles swollen? Issues with edema...kidneys?

    Again, just go to the ER...

    Hope you find relief soon...
    Love,
    Oluwa
    Thank you so much for the input and advice. The good news is it only took three phone calls to get to talk with a doctor. Bad news is it wasn't my doctor, and it was my mother who called. My mom is much more aggressive than I am, and refused to just leave a message. The nurse tried to tell her that I had only called once yesterday and that she hadn't had a chance to relay the message to the dr., my mom straightened her out. (She was with me both days I called and had to leave a message, as it was she who said I needed to call my doctors and talk to them). She demanded that a doctor get on the phone and talk to me about what's going on, because she couldn't just watch her daughter suffering with pain. I explained to the doctor about the pain and what meds my rheumy has me taking, as well as what meds I have tried to take to control the pain. She suggested I up my methotrexate and called in a RX for vicodan to control the pain until they could get me in next Thursday. She also mentioned that she would like to start me on prednisone, but suggested that we hold off on it until after my appointment, that way they can see me when the disease is this active My mom is very involved with what I'm dealing with and has agreed to go with me Thursday to the appointment, to help me feel like I have a voice and offer me strength in dealing with the doctors.

    To answer your questions, I'll do my best and answer them in order. I completely agree with the lack of sleep amplifying the pain. The days that I can get some sleep, the pain is not nearly as bad.

    They had me on NSAIDs (naproxin and ibuprofen) and my body did not respond. My primary tried a tapering dose of prednisone, which I did respond to the higher dose, but as it was decreased, my body stopped responding.

    The only activity I had Monday was driving my uncles truck to pick up some furniture. I didn't lift any of the furniture, and the truck is just a basic Dodge Hemi. A bit bigger than my jeep, but by no means did it require any extra strength haha.

    I don't have carpel tunnel (at least not that I'm aware of). The pain is more like a burning, throbbing pain. Then I get tingling as if my hands fell asleep, after a while of that feeling I get what almost feels like muscle spasms and a shooting pain that goes all the way up my arm to my shoulder.

    I have no rashes, nor any changes of color to my hands or arms when this is going on.

    I've tried elevating them, the strange thing is the pain gets worse when they're elevated. The pain seems to subside when I hang them down, but the swelling gets worse . It all seems like an awful cycle. And I haven't noticed any extra ankle swelling, well as bad as my hands. My whole body is puffy, but nothing like my arms.

    Thank you to everybody for the great advice. As for firing him, after finding out it was the nurse who was not relaying the messages, we decided that I'll see the doctor Thursday and let him know everything that has been going on, including his nurse not relaying two messages about me being in pain and needing help. Hopefully this is not happening with his other patients If I don't feel comfortable after talking to him Thursday, I guess I'll have to let him know that I need to start searching for a new Rheumy
    "When life gives you lemons... search for the vodka"

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    Yea for Mom's! Gosh so sorry to read your post, I can feel your pain. Being a newbie to Lupus I am amazed at the drugs you take and still are in trouble. I take pred for another AI problem and it is very good for pain/flares but there are side effects, water retention is one. I find that water retention in additon to the lupus swelling is very uncomfortable too but eventually the pred will stop the flare then soon after the swelling too. Ont thing I find works good with the retention is eating watermelon. I spend lots of time running to the bathroom but it speeds up releasing that water and helps a painful burning and swollen mouth too.
    it's just not fair and I sure will say a prayer to ask to send some relief your way and some helpful guidance for control next week. Sandra

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    Quote Originally Posted by dsunshine View Post
    F**k...opps I mean forget your Rheumy that you currently have. Find someone new but in the meantime go to emergency and make sure you are the loudest and in the most pain so they can see you first. WHY WAIT!!! There is no way you should have to wait a week to see any doctor when you CLEARLY stated you were in pain and suffering. That is the most inconsiderate thing I have read...well almost. You need relief yesterday.
    Lol! I agree w/sunshine. Forget the rheumy you have. Sounds hugely inconsiderate. I am blessed to have the rheumatologist I have. If I call today, I get a call back. . . today! Don't feel bad about being pushy. If you are in pain, you should't have to live with it. Especially, as someone else said, there are tons of meds that can help w/your symptoms. Hope you feel betters soon!

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