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Severe bone pain - Anyone had this?

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Posted 7/11/2007 6:58 PM (GMT 0)
I am in a middle of a flare that has got my kidneys and heart.  I walked for an hour yesterday morning, against doc's advice and have been having severe bone pain throughout my entire body.

Never had severe bone pain like this before.  My muscles have recovered from the walk by last night but not my bones.

Does anyone have any advice?  Can't get to a doctor for another two weeks and would have to go to ER if important.

Thanks - Kristinn

Posted 7/11/2007 7:37 PM (GMT 0)
I don't have any advice but I have had bone pain in my upper arm and it was pretty severe. It lasted a day so I forgot to mention it to a doc. I'd be interested also in what others have to say.

Take Care
Posted 7/11/2007 8:11 PM (GMT 0)
I have had bone pain in my legs, hips, and sometimes back; but not as severe or as pervasive as yours sounds. Normally I would suggest taking a few extra mg of Prednisone for a couple of days; however, I don't know anything about what that might do to kidneys and/or heart. So, I would suggest a warm bath in Epsom salts (or cider vinegar) -- normally used to help leech lactic acid (the stuff that makes you sore) from muscles, but maybe it'll help w/bones?? Make sure you're doing the right things to support your kidneys.... Definitely take it easy (no more walks!) and pamper yourself! Give it another day or 2, if it's still an issue check into getting a medical opinion somehow. Just my 2 cents,
Posted 7/12/2007 12:32 AM (GMT 0)

First off little missy what were you thinking? You have an enlarged heart and kidney disease. Your doctor said don't walk please don't do that to yourself. I understand how frustrating it is when you just want to do somthing normal and your told not to. We have all done that before and we always pay for it in a long run. I used to have God aweful bone pain. I had almost convinced myself I had bone cancer. There wasn't any part of my body that didn't hurt my bones to the touch. It seems like plaq has helped that alot. Like lynnwood said I would normally take extra pred and that would help. Maybe you could try to do some type of icsometric exercises (sp). something that would strengthen your muscles.  it is your muscles that protect your bones. If it gets worse you probably should get it looked at soon.

I hope a soak in a hot tub does you some good and you start feeling better soon

hugs

carol

Posted 7/12/2007 12:56 AM (GMT 0)
Kristin,

I thought I'd had every kind of pain imaginable, but I've never had pain in my bones. If you have that on top of muscle and joint pain, you must be in a world of hurt. I'm so sorry and don't have any advice for you, but you sure do have my sympathy. It sounds like you are in a serious flare and I'm worried for you. A good soak in the tub sounds pretty good to me too, for some temporary relief at least. And sometimes a little temporary relief does me so much good because it's the only way I can get some pain-free relaxation. It's as though I can catch my breath for a few minutes when I'm really hurting.

Good luck, Kristin. Please let us know how you're doing.

Love,

Pat
Posted 7/12/2007 1:26 AM (GMT 0)
Kristin, I'm sorry this is happening to you. I don't have a lot to add to what the others have already said. I've had some bone pain before in my legs and it is a terrible pain. I know you can't get in to see the doc for a few weeks, but maybe you could put a call in and see if your doc or the nurse can call you back. If this persists or get worse, it might be best to go to the ER, especially since you have heart and kidney issues. Please take care of yourself. ((((Hugs))))
Posted 7/12/2007 3:27 AM (GMT 0)
Hi chris,

If you have lupus, and sun sensitive, bone pain is related alot to Vitamin D deficiency too. Just a thought, since I have it.

Leta
Posted 7/12/2007 4:49 PM (GMT 0)
Thanks Guys/Gals, I really appreciate your input. Yeah, still in severe pain. Tried the soak but no luck. Really getting cranky from pain and lack of sleep from it. I need to get on that Prednisone and back to the doctor. Those of you who have had it, did they say what it was? I am use to the joints acting up like this but not all the other bones and everywhere like this. My joints are more painful though now. Does hurt when something rubs against them or touches them. I had fibromyalga years ago but that was a very different pain. This is actually in the bones kind of pain. I too first thought perhaps bone cancer, although I find it hard to believe. Then again maybe not :)

I read something about lacking vitamin D with kidney disease, and the ER doctors said to come back in if I have any bone pain when I went in for the kidneys. Didn't think much of it at the time and thought it was odd they were worried if my bones hurt. Just thought they were wondering if my rheumatic arthritis was acting up, but maybe it is significant for kidney disease.

My car is waiting to be fixed so I have no alternative but to walk to the bus stop. Gotta go to work, kind of worried I'll loose the best job I ever had if not. No work, no eat. Think I am losing my marbles. I have been without sleep for 3 days, I'll try going one more, but if it doesn't clear up I'll bug the ER. They love that. Thanks for listening, you are all wonderful - Kristin
Posted 7/12/2007 5:52 PM (GMT 0)
Hi kristin--
It sounds a little like fibro, which I have, which increases the normal pain from whatever other problems you have. I agree with the others about the length of exercise against the docs advice. I would call the doc and ask about fibro, and get something for pain soon before you lose so much sleep you have really bad problems. I have bad osteo and hashis with neuropathy and my bones ache, especially on gray days, to the point I don't even want to be touched. Exercise makes this worse. It does with fibro too. You have to start slow and do little piddly stuff that causes you no pain or stress whatever and work up from there very slowly. Maybe a neighbor would give you a lift to the bus stop in the morning. I would also explain to the shop about how much you need your car. If worse comes to worse, call the doc and get him to write you out or leave really early and stop and sit along the way. I really admire you for still being able to work.
Posted 7/12/2007 7:26 PM (GMT 0)
Hey, hope to have the car back over the weekend. People are kind of strange here. They are nice in passing but kind of into themselves. Even though I grew up in the neighborhood for the last 31 years the neighbors don't talk to one another unless your lawn is not mowed or something. Only one more day left in the week, please pray I get it back before Monday.

I don't think fibro. I had it before and it was all these areas you couldn't touch or I would get extreme shooting pain - the lighter the touch the more extreme the pain. I remember it well. This time it isn't shooting pain. It is a constant, not sharp (dull?), severe pain in ALL of my bones throughout my body; head, neck, spine, shoulders, arms, wrists, hands, fingers and on down the line to my toes. My hips, top of feet and shins are the worst. I also noticed that my tiny calcium deposits under my skin have grown enormously in the last week or two. I'm not sure if this is related. Also, Flexeril only helps a little for the muscle spasms where it use to work great.

I am really bumming. Doctor is not in and no one can help. I was also told they just put me on a waiting list for a Nephrologist. I have been waiting months already and it looks like more months to go. Very discouraging! Nice knowing everybody. Not the first time left for dead. I'm sure it isn't going to be all that bad but I really need to get out of New Jersey. Hopefully the Patient Advocates can come up with an idea. I'm at wits end and not much left in me to fight with. Trying to hang tough, guess we'll see what happens. Need some cheering up. Thanks for the support - Kristin
Posted 7/14/2007 2:27 AM (GMT 0)
Hi Kristin--
Don't say left for dead! Maybe you need to call the nephrologist directly and speak with a nurse and explain how serious your problems are. Also, going to the er and making them set up a referral for you is another way to work it, if they will do it. I hope you feel better soon and get some of this taken care of. At least maybe they could get you on better pain stuff. Tramadol is good and non-narcotic, if you can take it. Motrin is very bad for your liver and you should n't be on it or any other NSAIDs if you have inflammation, and the docs know better than that. Narcotics are better for you, even if they have tylenol in them. You might want to discuss this with them, you have a right not to want to add cirrhosis to your problems and motrin is definitely contraindicated. Flexeril is not that great either, I developed an allergic reaction to it because my liver couldn't metabolize it fast enough. Also, COX2 inhibitors cause severe all over bone pain in me after a few weeks of taking them, very severe pain all over, and I guess some people have that reaction to them, especially if your liver is impaired.

I heard that Pennsylvania may have better medical, near philly anyway. I talked to someone from the epilepsy foundation and they said that there's a lot of free services for people with medical problems and stuff. I don't know if that is near where you are. I wouldn't recommend where I live to anyone unless you like hog hunting and mudslinging. But it's affordable and I can get some benefits here and there isn't a wait for medical care and they do have pretty good docs here, compared to the larger cities, because if word gets around they're lousy, they get run out of town. You have calcium deposits under the skin? Do you have gout or pseudogout (where you get crystals, like kidneystones in your joints) and I understand that is very very painful. I guess the regular AI disease causes this too, which stinks. I hope you feel better and get into a nephrologist soon.
Posted 7/16/2007 5:04 PM (GMT 0)
Thanks Marji - you raise some good points. Perhaps I should cross the bridge to Philly. Anything is worth a shot. At least I finally got my car back and don't have to walk anymore.

The doctors have been giving me NSAIDS for years out the wazoo. Yes, something is wrong with the liver. Inflammed (along with spleen) for years, some sort of spot was on there but went away, the ER doctors are concerned about it too. In fact, more than the kidney which I thought was odd. But as usual, I can ask a zillion questions and they give me BS answers. Basically, they don't know and don't care. Get her in and get her out.

Hog hunting and mudslinging sounds nice. I lived around farmland once in lower Delaware. Loved it there. The doctors were great... and free! I sure didn't get this treatment. I guess it is because I had a big husband back then :) Seriously, I think they just cared about people. Never liked it here much, can't even go to the beach and I live minutes away. I rather have animals and peace & quiet anyway. Although those cows are loud during mating season.

Never heard of gout or pseudogout. Just told they were calcium deposits, but of course, no one checked it out. I just figured there are just too many larger issues to tackle than something growing in my arm/leg. Pain in bones is kind of coming and going since the weekend. I feel better and sane now that I can get sleep. Maybe its the Atenolol (Inhibitor), but I really need the stuff. I know immediately if I don't take it in time, my heart goes nuts and I am exhausted and cranky/edgy all of a sudden. In fact, I think they should increase the dose. I'll go back and talk to the doc on Thursday. Thanks again, it feels good to get this off my chest - Kristin
Posted 7/17/2007 3:21 AM (GMT 0)
Kristin
If you have inflammation of the spleeen and liver you should NOT be taking any NSAIDS and they should put you on roxicet or something with no tylenol (like oxycontin but no tylenol) or at least loratab or something for a while until the inflammation goes away. Liver problems are nasty and if they persist, you can have some nasty embarassing problems, like bad bad loud gas frequently, diarrhea, sometimes uncontrollable, nasty stools, pain, bloating, weight gain, and flu like symptoms that can be really agravating, and it can get worse to involve memory problems, skin problems. Have you considered telling your docs that you don't want to take NSAIDs till this goes away, that you want narcotics instead for a month or so to see if the inflammation stops? I think this is very important. The gout/pseudogout is liver related and I think it can affect more than your joints. I've been able to take tramadol with my lousy liver and it is pretty good for pain, but I need to take 6 50mg tabs a day every day to keep it in my system to work. The liver is a large issue. Don't ask them questions, just tell them what you want. You need to give your liver a break before you start getting permanent damage.

I live in the deep south, the low country, near the Atlantic, and life is different here, but it is really cheap. My friend lives in vermont and says its real cheap there but it is so cold in the winter, I don't think I could handle it. There's no traffic here, and there's a lot of people on disability here because its so cheap to live. I can only see one neighbor from where I live. I got 6 acres and a newer fleetwood doublewide for 50000, which isn't so bad. There's not much work around here though. The ocean is close, but its still out in the woods, dirt roads and all. I miss the midwest where I grew up and hope someday to go back, when I can get enough for my house to get something up there. Well, take care and glad you are getting this off your chest too. Not good to keep it in and I will pray that you feel better and get good help for your problems and better pain medicine.
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