Found out about my bone pain.. .

[JennifersHope]

Hi,

Well I got the word today on my bones... Dr said that I have the osteonecrosis also known as avascular necrosis.... He said I also have arthrititis in my hips as well....

Basically avascular necrosis is when the blood supply to your bones (in my case hips) is cut off, the bone will die and fall apart which is very painful btw.. I am lucky enough to get this from the extremley high doses of steroids I am on related to my addison's and exacerbated by CF

I am having further tests to determine if I am a candidate for a surgey that can help the bone to live longer... it is called a decoring or something.. It is a major operation with a six week recovery time in a healthy person.. The whole purpose of it is to buy me more time before I need bilateral hip replacements which is also a major surgery and something that he said is for sure in my future...

My dr said he wants to stress to me that it isn't a matter of if this is going to happen to me but more of matter of when... He doesn' t know..can be weeks to years.... but I can wake up one day and have broken hips.. they will crumble right out from under me....I have the song ring around the rosie stuck in my head esp the part about WE ALL FALL DOWNNNNNNNN

. The next test will determine how far along I am in the process of breaking. Not to much they can do for the pain... he said they can give me injections under floroscopy into the hip... and that could help for a while.. but he wants to wait for the rest of the tests to be done.....He offered me narcotics which I won't take cause it makes me vomit....

He told me I should be thankful that my bones haven't cracked in half YET.. GOsh I am having a hard time feeling thankful... but I guess as long as I can finish school it will be okay... He did tell me that if I am a candidate for the surgery I need to have it right away... in order to get the best results... I told him I don't care if I stRap two by twos to my hips.. I am finishing school first.. since the recovery is so long...

Okay done rambeling... I know this isn't directly CF related... but if I didn't need all those high doses of steroids cause of my dumb breathing..

Anyway.. anyone know where I can get some good two by twos??????

Jennifer

 

[miesl]

Lowes, Menards, or at last resort... Home Depot.

Ack, I'm sorry to hear that the prognosis isn't so great. However, at least you know what's wrong and know it can be treated (even if the treatment sucks).

-Michelle

 

[spicyone18]

((((HUGS))))

I feel so bad for you! But like Michelle said at least you know what is wrong and you can now work on fixing it.
Anyway feel better! <img src="i/expressions/rose.gif" border="0">

 

[Emily65Roses]

<blockquote>Quote
<hr><i>Originally posted by: <b>JennifersHope</b></i>

He told me I should be thankful that my bones haven't cracked in half YET.. GOsh I am having a hard time feeling thankful...
Jennifer<hr></blockquote>

I understand his want to help make you feel better about it... but I bet if he was in your 2x2s, he wouldn't be so thankful either. No one can blame you for complaining. Well I suppose they can, but if they do, they suck. <img src="i/expressions/devil.gif" border="0"> I certainly don't.

 

[rose4cale]

I'm glad you have answers, though the answers truly suck! You are very strong willed. Do what you need to do Jen, and just know that we are here for you, praying and hoping for the best! Hopefully the pain can be put under control soon and you can rest a little more comfortably.

Take care Jen!!

 

[JennifersHope]

You guys are so funny... THanks... Emily.. I literally spit my soda out of my mouth.. after aspirating it.. from laughing so hard.. I think I may have to use that as my new saying.. Well if you were in my 2X2s......

Thanks.. I guess it isn't the end of the world... just that coupled with my stomach and blah blah blah.. I love the laughs and support I get here...It really means a lot.. they are both equally as important making jokes and getting support...

Oh please send any spare 2X2s directly to my house.. I was thinking of getting them painted.. and having them match my outfits...what do you think??? ...I could be on to something....

Jennifer..

 

[Emily65Roses]

Aspirating/choking was not the intent, but laughing was, so I got it half right. Hehe.

 

[anonymous]

That's awful! I hope everything turns out ok. I've been on steroids for about 10 years now cause of my breathing and for the past couple years, every once in a while my knees hurt really bad, so much, that they feel that every step I take they're going to break in half. I wonder if I have the same problem as you. I couldn't imagine the pain your going through though with your hips being that way! Good luck, and God Bless.

 

[kybert]

oh jennifer im sorry <img src="i/expressions/face-icon-small-sad.gif" border="0"> just one of the many debilitating side effects steroids cause <img src="i/expressions/face-icon-small-sad.gif" border="0"> so when you do eventually need hip replacements does that mean everything will be 'ok'? 'ok' meaning you will be able to walk to some extent again. also, where did your hip pain start?

 

[chloe]

Dear Jennifer...

I'm so sad to hear about what is happening because of the steroids!!!!

I know that there are always side-effects...from the medication that we have to take!!

I hate that it's true...but...it is!!!!

You are a very brave woman...and I admire you...and how your faith in God seems to help you through the most difficult situations!

I have no doubt that you will come through this...as you have every situation you have gone through.

I want you to know that you are in my prayers...

You have been an inspiration to me...and...I'm sure to many others!!

Blessings...Chloe

 

[JazzysMom]

Jennifer......the part about ring around the rosie cracked me up. I love that you are able to find some humor throughout all of this. I am assuming its because if you dont laugh you will cry or maybe you just have an odd sense of humour. Either way......I am sorry to hear its not the best news ever, but as others have said at least you have an answer for the cause of the pain. Now the next step is easing the pain. Oh by the way.....with the cost of lumber going up, you might want to stock up on some 2X2 before it gets too costly and maybe Julie can help you determine if it can be a medical expense deduction! Stay Strong My Dear!

 

[JennifersHope]

Thanks again for all the kind replies....It felt like a big warm hug.... I really appreciate the encouragment.... To answer the question of the AP... my pain just started out of the blue one day.. It felt like I fell on both my hips... but knew I didn't.... I have had the pain on and off for about a year but never really said anything because I didn't want to complain about bone pain because I thought I should save my complaints for something more important.... I know I know.. dumb

What finally made me say something to my doctor now is, I don't sleep at night...I can deal with most things but not, not sleeping.. I need my sleep..I actually dread going to bed at night because I know I am in for a night of pain... I am a side sleeper and now the pressure of sleeping on my hips and actually my shoulders as well hurts so bad.. that I can't sleep I start out on my back but always end up turning to my side which wakes me up.... They are checking out my hips first.. but have a feeling (NOT CONFIRMED AND MAY NOT BE)it is in my shoulders as well.. anyway..

I guess I will find out what they think I should do after the next MRI...

Anyway, to the person with the knee pain... they say that avascular necrosis, also known as osteonecrosis is most commonly found at the end of long bones, mainly hips, knees, and shoulders... The orthopedic said that anyone on chroinc steroids is at high risk for getting it.. NOT so much ppl who are on it once in a while.. though still possible.

I would recommend googling either avascular necrosis or osteonecrosis and seeing if you have some of those symptoms.. Many other bone disease mimic avascular necrosis though so it really is just a starting point...

I am so glad that they no longer giver Cfers steroids to take chronically... I actually learned in class that they are trying to come up with something different to give post transplant as well.. I don't want to mislead you.. I think going on steroids for SHORT periods of time is okay.. especially if your quality of life sucks.. it can improve it greatly.especially if someone is endstage... it can really improve how you feel... JUSt long term really blows but that is what I am stuck with...


THanks again.. I have a big smile on my face from all the love I feel...

Jennifer

 

[LauraM]

Hi Jennifer

Sorry to hear of your bad news - I also have avascular necrosis, but in my knees (end of femur bones).
I had pains for several years before I was properly examined and diagnosed. I had been on steroids for 6 years previously but no-one had thought to investigate! I was quite annoyed at the doctors for not finding it sooner, at the time.

I am quite lucky in that I don't get a lot of pain - I'm not saying it doesn't hurt, but my consultant said he'd never seen a case as severe as mine and wondered how I could even walk! It's so bad that they can't do anything for me - I just have to wait until it's so bad I can't walk and then they will replace the bone.

Laura xxx

 

[JennifersHope]

Hi Laura..

That is awesome that you are not having a lot of pain... I guess it depends on the part of the body where it is.. cause my hips feel horrible....my knees don't hurt at all....

I don't understand, if you avascular necrosis is so bad how come the joint didn't collapse? Did you do something to prevent the joint from collapsing? Did you have the decompression surgery done?....I would love to know what you did.. everything I have read and everything my dr said is when it gets bad it just collapses because the bone is dead.....I don't know if it is different for the hips.. I have it in both my hips but worse in my right and possible both my shoulders.. but being that I don't bear that much weight on my shoulders it only hurts when I lay on it at night..

Do you have it in both knees??? and are you still taking steroids??? I would think at your age if you were able to stop the steroids you would have a decent chance..of stopping the death of the bone... I am to young but you are certainly to young to get joint replacement... we both, providing that we live to a decent age would need to get the surgery repeated about every 10 years.....or so..How long have you been walking around with this?? I know each case is different and that my dr said he doesn't know when it will happen...but just wondering..


Sorry to ask so many questions.. I went to an avascular necrosis website and reading what everyone goes through gave me an anxiety attack. I guess to someone who doesn't have to deal with that much this is the end of the world to them but they acted like their life was over....... and it stressed me out so much....

Jennifer

 

[kybert]

the reason i asked jennifer is because ive actually had these weird hip pains the past few months. at first i thought they might be from my jeans [tried to find the most simplest explanation] but they werent. they arent in the joint and are kind of on the sides of the back of my hip. it feels like someone has punched each side really hard and it just goes away and then comes back a few weeks later. and like you sometimes my hips hurt in bed despite shelling out for one of the most softest beds available where i am! your post made me think that perhaps i shouldnt outright ignore pains like that [even tho i will continue to ignore this until it possible gets worse], especially since i did take high doses of steroids for quite some time a while back.

 

[JennifersHope]

Kylie.. I don't know... but those were some of the same symptoms that I had... I too ignored it till now it interferes with my sleep... Like now... I am tired but dread getting into bed.... I have good days and bad days..

I am no one to talk.. cause I do the same thing ignore things... I don't recommend it... do as i say not as I do kind of thing.....the thing that strikes me as the same is the feeling that someone punched you in both hips that is what it feels like... also groin pain is common .... X rays only show advanced stages.. MRI is the gold standard.......
Something I just learned is that it hurts more when ppl with this lay down because the pressure increases in the laying down position.. I don't understand it... I just read it...

I also have read.. and like I said can't trust everything you read but.. even ppl who stop the steroids years ago can still get it.. I am have never stopped taking them...but I just met someone online that only took them for a brief 6 month stent and has it...


Maybe if the pain persists let you dr know... It isn't real common in the average person.. I have never heard of this before. my dr told me... and I am in nursing school .. usually it is ppl on steroids who get it that and ppl who drink to much

Let me know how you do,

jennifer

 

[kybert]

hmm i will definately follow it up if it gets worse then. seriously wouldnt suprise me if steroids did cause some kind of serious bone damage to me. after all it sent my bone density to poop and messed me up pretty bad for the time i took it. sometimes i wonder if it did do long term damage and i just dont know it yet.

 

[LauraM]

Hiya Jennifer

I'm not sure why my bone hasn't collapsed - I guess my doctors don't know either... I haven't had any treatment at all because it's "too far gone" to do anything but replacement. I actually wasn't aware that the joints can collapse/break - I just assummed I would eventually be unable to walk and then would have no option but to have a replacement.

I do have it in both knees, although my left knee is much more severe. I also have pains in my ankles sometimes but so far the xrays haven't showed anything. I am still on steroids - but quite a low dose now. When I was at the paediatric hospital (<18) the doctors there used to put me on 40mg per day for quite long periods to control my abpa, but now I'm on 10mg as a maintenance dose. And now I'm at an adult cf centre they only put me on high doses if it's essential and if they do its only for a few days.

I was diagnosed 2 years ago but I've had symptoms for at least 5 years - I complained of pains but nothing was done to find out whatv the problem was! My docs say I am too young - that's why they're just leaving me be, I guess, while I'm still able to walk.

Don't worry about asking questions! It's good to be able to talk to someone who's going through the same thing. I've never met anyone else before who has avascular necrosis because of steroids. I've never really read anyone else's experiences - but since you said you had an anxiety attack after reading it, I don't think I'll look!! - lol.

If you want to chat and have MSN or AOL - pm me and we can swap addresses if you like?

How old are you, by the way?

Laura

 

[anonymous]

Actually Osteoporosis is a side effect of long term steroid use as any one who has had or is listed for a lung transplant will find out. You have to be on steriods(prednisone) the rest of your life. They actually often prescribe bone building drugs and extra calcium to trasplantee's and anyone who already shows symptoms of it pre xplant like myself. So anyone who is on sterioids for their CF should have a bone density test to check because their are pills and drugs like fosomax that can help over time rebuild bone before it becomes too bad.

Kristy

 

[Emily65Roses]

Does the same rule apply for inhaled steroids like Advair? I wouldn't think they'd cause osteoporosis simply because you're not ingesting them, but someone correct me if I'm wrong.