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Feel like I'm healing from broken bones....everywhere!

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Posted 9/17/2010 2:39 PM (GMT 0)
So I've been sick for about 6 weeks now from bronchitis to chondrochondrytis (sp? inflammation of the cartilage between my ribs) to about 30 ulcers in my mouth and all the while, my joints started hurting worse and worse.  Then about 2 weeks ago it moved from just my joints to what feels like all of my bones.  I know its most likely the tendons/muscles surrounding the bones, but it feels like when I broke my foot...about a month in..that constant horrible soreness and random sharp pains.  I can't focus on anything else and it feels like...I can't even describe...that my bones are trying to move when the rest of my body doesn't want them too!

In any case, I'm seeking out a new rheumy as mine has been completely unresponsive in the past 6 weeks...thank god for my pcp.

I'm only on plaquenil for the lupus right now (on celexa, savella, norco, soma and valium for other problems) but none of it is helping this pain and if I weren't already losing hair, i'd be pulling it out.  My pcp mentioned putting me on a titration pack of prednisone for a week or so to calm things down.  Before I was diagnosed, I went to the ER in pain from what I thought was just my Fibro/CFIDS/SI dysfunction and she put me on 4 days of prednisone to calm down swelling in my hip and  my whole body felt better - even though I hate being in steroids.

Question is...do you think this will help? I feel totally helpless because I can't sleep or distract myself from the pain.  I know a lot of you have experience with the corticosteroids so any response would be helpful...or just if you experience the same thing...thanks so much!

Posted 9/17/2010 4:39 PM (GMT 0)
a dose pack might be just the thing for you right now. Prednisone has been a godsend for me and it helped my hubby through some rough patches in the past. I say go for it because it is not like long term pred where you have to worry about your bone density being affected. Then again I am not a doctor just saying this doctor makes sense.
Posted 9/17/2010 5:04 PM (GMT 0)
Thanks so much for your reply. I have never done it knowing that I have lupus, although I've taken both the 4 day and 10 day doses before. This last time really made me think because I couldn't believe how much better I felt all over - they gave me morphine in the ER which sure helped me able to sleep and feel better for a few hours but the prednisone helped for a few weeks. Thanks again for your reply!
Posted 9/17/2010 7:01 PM (GMT 0)
I think the prednisone will really be helpful for. Just from my experience with lupus and meds. The best things that have helped me is a combination of mobic twice daily and ultram 2 tabs 4 times daily, plaquinel 2 times daily and am at present on the prednisone also. But without these meds it would be impossible for me to function. We have tried many things but this seems to help me function better than any of the others up to this point. Talk with your doctor about these maintenance meds. I am glad your searching for a new Rhumy. This desease is hard enough to deal with much less having a doctor that won't listen to you. Please let us know how your doing.
Posted 9/17/2010 7:13 PM (GMT 0)
Dear Pennstate,

Wow, I really feel for you.  When the pain gets that bad it can really be hard to function at all.  I was diagnosed in March of 2009 and was put on prednisone after I started to get pitting edema.  I am still on it, unfortunately, anywhere from 5 to 7 mg a day, depending on my flares.  I see the side effects that it has had already, but I look at the other side of the medications as well and all I can say is that I decide to take the risks so I can have a quality of life that allows me to enjoy each day with my family and hope for the best.  Hope this helps in anyway.

Hugs and Angel,

Lynnette

DX - sle and carpal tunnel

RX - plaquenil, prednisone, etolodac, lisiniprol, darvocet and flexeril when needed, and vitamins

Posted 9/18/2010 11:58 PM (GMT 0)
Thanks for the replies. I started the prednisone 2days ago (a 10day dose starting 4 days at 40 mg and working my way down) and am unfortunately not having any relief yet. I woke up around 4 am with a total of maybe 3 hours of sleep due to pain. Then I almost didn't but drug myself out to volunteer at our local chapter of the Lupus loop.

I felt so horrible but hought maybe getting up and out may help. Got back around noon and by then I felt like someone was ripping my shins, knees, bladder and lower back just right out. Also when I breathe deeply my flank area works so I'm worried about kid ey involvement. I debated going to the er all night but now I'm just trying to do whatever I can do to go to sleep and pray the prednisone will work to or row.

I have an extremely high tolerance for pain so I'm not underestimating the feeling.....has anyone had this feeling.. Just like all my bones are re erring from being broken...fingers crossed for the prednisone!!!

Thanks everyone!
Posted 9/19/2010 7:16 PM (GMT 0)
Is the pain worse on prednisone? I have heard that prednisone can cause the fibro to hurt more! Also, with kidney involvement in Lupus...there is no pain associated with it. The majority of the time, it can only be caught by bloodwork! When it gets more advanced you will have some symptoms but deffinatly not pain. Have you had kidney stones before?

If the pain is still happening tomorrow in your kidney I would deffiantly go to your doc and have some blood work and a urninalysis done to see if you have WBC in your urine...that pain could also be a kidney infection!

I sure hope you can feel better and get this pain a bit better controled! Will be thinking about you and please keep us updated
Posted 9/21/2010 11:44 PM (GMT 0)
I never put the relationship together with fiber, but my skin sensitivity has definitely worse. Also my hip sockets always seem to kill on prednisone I don't know why. All over I think I feel better, especially my bladder, lower back n joints but it's still kind of bad and still have that bone-crushed feeling especially in my legs. I'm down to 20 mgs on my 5th day and am just still hoping this gets netter.

With my being worried about having had kidney problems before (I have had kidney stones and currently have some in my left kidney but this feeling is different. It's also very difficult for me to determine whether I could have a kidney infection/uti because I have interstitial cystitis and it always feels like a horrible uti :/ ).

In any case I'll wait it out but now I'm worrying that maybe it's a swelling pain...oh well I'm going to wait u till the prednisone pack ends and see. I've been staying off my feet and elevating them but still getting the pain..hurts when I walk too but think I just need to push through...guess that's what it's all about. Thanks for the input about the fiber acting up...makes a lot of sense!!
Posted 11/4/2010 2:12 PM (GMT 0)
Have you had your vitamin d levels checked?
Posted 11/9/2010 6:59 PM (GMT 0)
I just finished a Prednisone Pack..... living with those and Percosets for a week helped with the flare. However, doctor says this flare left nerve damage in my legs and feet. The broken bone feeling in the feet, I have found relief in rubbing them with Flexall 454 and putting on thick socks. It's amazing relief for a little while. For pain, I take Neurontin and Curamin. Neither are narcotic, so I don't get the same relief level, but I do get a comfort level, and I don't have the effects of the narcs. Being bipolar 1 as well presents a few complications in adjusting the Seroquel and Neurontin with the Luvox and Klonopin. But I am learning to live a pain level that I can tolerate.
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