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what happens when your bones completely disintergrate?

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Posted 1/26/2006 7:01 PM (GMT 0)
i have alot of destruction going on within myself and my body with the arthritis as being DX with AS/PA in dec by my rhuemy.

what i wanna know is what happens when all the bones dry up and disintergrate in my spine and shoulders.

when i move a certain way ( my shoulders) they CRUNCH and i can hear the crunching going on. this has me very scared. it is a bizarre sound. like bones rubbing on bones. do they give people complete shoulder relpacement surgery if they lose enough bone? what happens? anyone know? confused sad

Posted 1/26/2006 11:08 PM (GMT 0)
My shoulders make the very same noise. Mine is bone on bone and one bone actually gets hung up under the other. This is called shoulder impingement. It can be surgically repaired. I opted to try PT where I was taught exercises to improve the supporting muscles and get more shoulder flexability. It worked great on the right shoulder, the jury is still out on the left.

Have you ever had a bne density scan? If your bones are thinning, there are medications to halt that. Have you had xrays or MRIs of your shoulders to determine what it going on? Sounds like they need some evaluation.
Posted 1/26/2006 11:42 PM (GMT 0)
thanks ides- i had a dexxa scan last  year but that was only of my thighs which said i was in hte green zone, now the upper part of my body is a different story it seems spine /shoulders seem to be shot, esp the left shoulder where i had two very large bone spurs that grew into my rotator cuff and tore it and was reattached via arthoscopic surgery which was rather painful to say the least. he did re-attach my cuff with a nylon thread and two metal tacks into the shoulder july before last.

 

it helped but he said he saw tons of arthritis in there which he tried to clear out. it seems now it is worse closer towards my clavicle near neck on left side now, when i move my left shoudler up and down it grinds and crunches and i can hear it and it  does hurt. can they do a complete shoulder replacement? is this possible?

Posted 1/27/2006 12:33 AM (GMT 0)
Snap, Crackle, Pop---Rice Krispies!!! (+CRUNCH). The new sounds my knees are making.  I understand how you feel and it's a weird sensation, not to mention painful.  I hope you don't have to have surgery!! I also suffer FMS that's why it took so long to figure out something else was wrong with my neck since the pain kept getting worse.  I have to pop/crack my neck sometimes or I can't move my head.  Waiting for my Rheumo appt. to confirm AS and to see how far it has progressed.

Posted 1/27/2006 4:27 AM (GMT 0)
me too migrunt....my neck locks up from time to time and so do the muscles, very scary to me. but i am wondering if orthopods can do shoulder replacements like knees/hips.

 

i wish i could get a new backy also but this is out of the question i know

Posted 1/27/2006 2:30 PM (GMT 0)

Missie, if found this article that might be of interest on your question:

http://www.webmd.com/content/article/103/107196.htm

Deb

Posted 1/27/2006 4:10 PM (GMT 0)
thank you migrunt that was very informative and helpful!!!!!!!!!!!!!
Posted 1/27/2006 8:20 PM (GMT 0)
Ok let me put my two cent's in.I have crohns,ra,oa and I have been having alot of problems with my knee's my left one is werse.When I walk I can feel my knee scraping bone to bone I have no fluid there and My ligament's are deteriateting and I have been told that I would have to have knee replasement but holding off as long as I can.I just never been a fan of getting cut on.
Posted 1/27/2006 9:27 PM (GMT 0)
I had a tear in my rotator cuff & had it repaired & I'm fine now.If the knees go it's time for replacement.
Posted 1/27/2006 10:50 PM (GMT 0)
i am too young to feel this old sad sad sad sad sad today was one of the worst days in my life as i was in bed nearly    all day long. i was sleeping, and i couldnt get up....except to come here and to eat something worst day i ever felt nearly
Posted 1/28/2006 1:37 AM (GMT 0)
sad  awe missie...i know.  i know, i know, i know.

there was a time, and it's still that time, where i couldn't wait to go to sleep at night....

                                because it was an escape from this.

and in the mornings i would wake up so sad.  and even cry because i hated to wake up.

wake up to just start a day of what? struggling to do things people take for granted, taking medications, taking injections, being in pain.  what living is that?

i'm still not happy with this, and it is depressing.  but i do feel i have adjusted QUITE WELL over the past year.  yeah, took a good year to get to an acceptance and adjusted level.  still working on adjusting...but that is a duty we have to do each and every day.

a few months ago i watched a biography of a "1000 pound woman" you know one of those shows? (not 1000 pounds, maybe more like 800)....and i so much IDENTIFIED with her.  it was so strange.  it was like the same story.

she felt robbed.  she felt like she wasn't a woman...or any gender at that.  she lost so much of who she was when she was no longer able to have her career.  her day was just in bed, medicine, bath, eating.  and THAT was me too! ( minus the 800 pounds..i'm workin to maintain the 95 i've got).  here i am @ 24 years old and completely understood her.

missie...you have a place to pour your heart out here.  do your doctors know how bad you feel about this and how bad it actually is? 

every hour as it comes. 

in my thoughts.

erin 

Posted 1/28/2006 1:55 AM (GMT 0)
hi erin- i watched that show also aboutthe overweight woman and a show about the half ton man also...it was very sad. but i feel i can sympathize with them as i cant get outta bed either on some days but not because of my weight, but because i am so sore all the time and my bones ache. i have tried to do some exercise on those days i can but it is not consistent.

 

i dont know whatto do anymore and neither do the doctors ...they all call me a highly complex case.

 

i suppose it is so. but not because i want to be but b/c i dont know what to do for myself anymore. it is an awful connundrum. i feel some self loathing here also b/c i cant do the things i used to and want to and feel sorry for myself and i dont want to do this. it is like a catch 22 for me. and i honeslty dont know how much of this is in my 'head' and how much is physicial.....i dont know how to help myself, and have ben to many therapists who have tried to help me.....it doesnt help me that i dont like where i am living either though.....in a 55+ retirement trailer park where everyone is dropping like flies

Posted 1/28/2006 2:11 AM (GMT 0)

do you live by yourself?  if i'm prying please don't feel obliged to answer. 

having someone in person who really "gets" it, is a big help.  like my friend, he's about 49 and has end stage kidney failure and nephrotic syndrome.  it's a death sentence he's been living for the past 10 years.  but when we talk, he gets it.  he gets how it feels when doctors throw up their arms and say "i give up" or "i don't know". 

it's very discouraging to have medications and procedures fail.  we put so much hope into them, and then there is a feeling of almost abandonment? you know?  why are so many people so much more successful with this?

you've been through a lot of trauma.  you're in a lot of pain.

to me, when i'm at my worst...days where it takes 2 hours to get out of bed and all i can do is just get back into bed.  or the time it took 10 tylenols and 8 hours to get from the bedroom to the kitchen...it's sickening.  it's so brutal sometimes that it feels like punishment. not very fond of bedrest 5 out of 7 days a week myself.  and 5 days is being generous!  but i've learned and am still learning to take it by the hour.  perhaps in a few months, maybe even next year...it won't be like this. i refuse to lose that optimism. 

when was the last time you had a bearable day? or a day where you felt that you were able to manage your condition?

i have to say...majority of docs dislike taking on complex cases.   been there too!

do you have access to specialty hospitals?

what about better pain management and physical therapy?  a visiting nurse service? or even a visiting physical/rehab therapist?

do you have any sort of medical coverage?

write back when you can.

erin

Posted 1/28/2006 3:28 AM (GMT 0)
hi erin thank  you so much for taking an interest. i have a husband who is very helpful to me. i do have good health insurance also. somedays i feel i am over medicated as i am on restoril for sleeping, xanax, for anxiety and GSD, provigil to help me stay awake in the morning, and norco for pain relief.  i am not taking anything right now for the AS/PA except for the clobestral for my scalp psoriasis which didnt help me one iota.

 

i go back to see my rhuemy on feb 7th to see what he has to say to me about the PA/AS

i ahve tried nearly every AD on the market. i know that i am depressed some -who wouldnt be?

i dont get out much as i am fearful of driving with all the crazy drivers here in fl.

one more crash and its curtains for me.

so i am careful as i can be without being overly paraniod.

my husband is down here in fl in the winters, then takes his 85 yr old mom back up to ny and stays with her ( babysitting her) until either she passes away, or it is time to return back to fl in oct. so he is here with me from oct -may/june.

it is a strange relationship but his mom and i do not see eye to eye as she sees me as her rival for his comapnionship. we live 2 streets away from her in this crummy but decent trailer park. i have my own house that i rent out for income and someone else than me lives there.

he doesnt want to be away from his mother and to move in with me in my own house even though it is only 12 miles away from where his mom lives.

she rules the roost as they say. if i was feeling better i would be working and in my own home where i could support myself. i cant leave him as he is the one with the health insurance and my policy is under his name, he is retired from NYS and has a good policy.

i am 50 he is 59.

his mom is 85 and in better shape than i am.

 

Posted 1/28/2006 6:39 AM (GMT 0)

hey missie,

as you might tell, i don't sleep well! "The rule of the roost"...one of THOSE eh?  let me guess, hubby is  a.)  only child   b.) Italian family  c.)  the only child of some success  or d.)  in closest vicinity  ....did i get it?   ah, it was a crap shoot, so i could be wrong on all 4.   this "responsibility" with the mother is taxing/stressful....a burden?  you can do without right?  there is no where else for her to go?  no other family...or even a home health aid to care for her?   that's a big issue, and i can see this being very emotionally tolling on not only your health but more importantly, your well-being.  hmmm, you do say he is very helpful to you.  does it make it worse the times where you both are apart?

no thank you needed in my taking interest.  it's what i do.  when my body catches up with my mind...i have a nice career in nursing awaiting.  when in school, i always was the person who had the most inpact on patients.  mainly because i've been on that side of the bed.  and in being ill to a point where i could not walk when this all began...i do not think i would be the caregiver i was.  with sickness and disease, especially of chronic progressive types....you gain strengths and knowledge that the person next to you might not have...nor ever have.  that has got me through some of the worse roads through illness.

medical coverage is something you can look at as a blessing. hey....we're diggin' for gold here, so we'll take anything!  be secure in that & also every now and then, think of how much harder THIS would be without insurance! Oy!  i do this.  even though my rheumatologist and GI do not accept my Medicaid, @ least i'm OK for my PCP & if need be, the hospital.

i understand when you say "if i were able to work....where i could support myself".  this in itself is a major life change.  i was always able to provide for myself and was always independent and worked and was able to pay for the mortgage, bills, everything and have a life on top!  not the case now...when in reality not even my boyfriend knows i am on state assistance.  but when you cannot work, get denied disibility, run out of savings....where else do you turn?  i hate it.  i never thought it would be like this.  as you never thought you would have been in that accident!  it's something we didn't choose.

ok...so you see the rheumatologist on the 7th. sit and talk to him about Enbrel injections for AS and PA.  it will help slow the progression and perhaps even help with the rest of the arthritic conditions.  Enbrel, if it did one thing...was it DID almost completely ease the AS back spasms and pain and all the other joys that go along with it.  however, it did not help me with any other joints or RA.  was on it for 1 and 1/2 years.

like my PCP said, "how can you not be depressed?"  there's a lot of truth in that.  i've avoided antidepressants.  took Effexor and Prozac at the begining and it made me feel more depressed! go figure.  i do believe though, that finding the right antidepressant is important and i do believe it helps with chronic pain and fibromyalgia.

starting with maybe the possiblility of Enbrel might be worth a shot, no pun intended!

you remind me of this girl i once knew, Stephanie.  i went to school for Ultrasound right after highschool.  she was in my class, and she, 9 months prior, was in a very bad motorcycle accident with her uncle.  she was 18. and basically...built of steel.  her whole spine had to be rebuilt, hips, ribs all of metal and bolts...lungs collapsed....almost died several times.  that is a lot to handle.  you've been through the mill gal! 

be careful with the medications you are on.  the restoril, xanax and pain meds all cause your central nervous system to become depressed...thus leaving you feeling not so great.  but it's a catch 22 huh?  medications have side effects...and then there are more medications to treat those side effects!

are you content with your current doctors?  that's vital.  otherwise, things will remain at a plateau.  

on leaving (sorry to others who are reading this as i'm lengthy...but for good reason)...it sounds simple, but when bedridden...my cat is my savior! and i cherish the FoodNetwork! and also HW!  and that every day that passes, is an opportunity for change and to learn. also very grateful i can on most occassions...wipe my own rear! LOL.  missie...we're all rowing the boat along with ya!  goodnight.  erin

 

Posted 1/28/2006 8:06 AM (GMT 0)
oh erin-

 

in answer to some of your questions.....his 'mommy' is closet to her first born son, from a family that she had two sons, one went to college and wised up and had his own life, 3 hours away from her, and doesnt want to care for her other than phone calls and when she is up in ny he comes for his 1-2 weekly appointments to say hallo....other than that he has his own life and doesnt want the responsibiltiy of taking care of her, so it falls on my husband, her first born. they brother was annoyed that my husband and i got married i guess because he thought he would have to pitch in more than he had and this was going to be an intrusionin his life..my husband had the role for many years of caregiver to his mother and father (now deceased whom i loved dearly and he liked me also to the chagrin of his wife)..

and he dotes on her which isnt so bad because he has some good about him but i feel  he is overly tired to her 'kitchen strings' which has in the past been extremely antagonistic to me. to the point of putting me second class. frankly, i dont mind when he goes up to ny with her during the summer, as i tend to do alittle better as i have to do more for myself then. i get out alittle more then because i have to. it is a depressing place i live in and not of my choice. but i had to wait 2.5 yrs to be able to get my hearing so i can get the ssi i appiled for, which was this month. so now i am hoping i will see some back pay from all this in about 4-6 months.

 

i really dont want to be alone, as ann landers used to say, are you better off with him or without him financially, emotionally, etc.

 

i would feel more lonely without him ( long term) so i do tend to put up with things that were i normal, would not do. but at 50, and having put the better years  behind me, IMHO who is going to want a broke down 5o yr old to care for?

 

so i dont make his mommy an issue much anymore and learned how to try to ignore it although i am not happy with this arrangement.

 

i did not come into the marriage with a mother to care for, etc, but with one son who is in college and 20, but if he were in trouble with his health i would take him in and care for him much the same way he is doing for his mother. so i cant fault him for that.

 

she is not an easy person to get along with and we had to make rules to make this work better than it was. IE, she cant always come over here even though she lives 2 streets over. i expalined to him if we lived in another state, she wouldnt be over every day to harrass me so just because she is closer doesnt give her the right to come over everyday to de-rail our relationship.  he respects this right of mine and agrees.

 

it wouldnt be bad if she was a positive person, a grandmotherly type who liked to bake cookies and bring them over to sit and be social, she is the opposite of that to my dismay.

but like i say, i do get some piece and quiet when they leave and this really doesnt bother me that much anymore to have some time off. in fact i crank up the stero.....i know of no other way for this to work at this point, as  they say what works is what works best i guess. i would have liked to be able to get away once in a while with him to go on vacation but he cant leave her as she cant drive. now here is the clincher....she is in greeat health!!!! only has a little sugar problem and little high blood pressure which is under control.

last year when she flew back to NY in april, he didnt join her until end of may. she began calling immead after she got back to ny and telling him she was having worse problems with her high blood pressure as a means to get him to come up to be with her sooner than he planned on it. i caved in and told him to go to her.

frankly, i dont mind now....i had the opportunity to make some new friends and get out alittle more without him here. and my son came down to spend a month with me from ny so we got to spend some quality time together with some peace and quiet.....

as far as the doctors go, i would like to be able to consult with others out of state as it is well known that fl docs are miserable for the most part.

i never had thses kinds of problems with ny doctors as i have had with fl docs since i lived in fl. it seems the standards of care are not the same quality as they are in other states.

 

 

Posted 1/28/2006 5:05 PM (GMT 0)

aha, gotcha! 

quality of care?  i can see that being a BIG issue.  when i had consults in NYC @ the Bone & Joint Disease Hospital...they were definitely more on top of things than my doctors in my county.  now....i ask to find out where did they go to school & where do they do their research and teaching and so on....  seems like the docs who went to and performed @ one time or another out of Manhattan are more with it than others.  if i had never went to NYC docs, i would have never started the TNF medications!

in the city where i live, if you're like under the age of 70 the doctors have no clue what to do with ya!  so picture a 16 y/o kid at the time coming in and complaining of joint pain!!  all my bloodwork was abnormal and they still told me to ignore it..."i would most likely get RA or some arthritic condition when i get old" ...in quote...

well, their definition of "old" turned out to be 21!  everything shut down regarding the joints.  and then they started to take it seriously.  a "complicated case"  of course, we all heard that before. but over the last 10 years i found 4 great doctors in all....and 3 of them i'm with now & at least trying the best route to get this in some sort of remission and get me to where i can be alone and fend for myself and have some sort of career for a while.

it's been a long hard road and still is.  and making the best with what i've got.

thanks for sharing what's going on @ home.  you're right...it would be nice if his mom was "alright" and was lovely to you and was able to be your friend.  but, "we're not in heaven!"... as my grandma would say.  "this is life".  she's funny. she's 87 and she gets ticked off by "the seniors" LOL.  it's hysterical!  she can't stand "them" especially if one of "them" is driving.  i hope to be like her when & if i get to 87!....spry and spunky and cussin' up a storm! LOL.

Posted 1/28/2006 5:31 PM (GMT 0)
yeah erin thanks for listening-

 

it has helped me get this off my chest....i would love to be able to go to another doc as i used to live in ny...maybe i can see my way clear to getting another opinion this coming summer when the huriccanes hit here!!! LOL it'll give me a reason to get outta dodge!!

 

sounds like your grandma is a sparky lady!! that is nice. i dont have anymore grandmas/grandpas left anymore. they all died a while ago. dont have a daddy either to cry to. dont have a mom to cry to, i was looking forward to a mom relationship with husband's mom but she didnt want a daughter in law to share her son with.

 

oh well. i am NOT going to behave like this to my son. I cant wait for him to get married already so i can dote on both of them. it ;ll give me a reason to keep going!!!

 

take care....and thanks for all your help :-)

Posted 1/30/2006 3:46 PM (GMT 0)
cool  Hey Missie,

Just wanted to see how you're doing. cool

 VIEW IMAGEErin 

Posted 1/30/2006 4:38 PM (GMT 0)
hi erin- i'll make this short.....HOW LONG DO YOU HAVE TO LISTEN TO ME??? HAHHAHA.....doing fair...have some stomach issues going on...stomach spasms and all. ibs now is rasing its ugly head and i had to stop all nasaids.....
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