Bone Pain

[Oc]

I hope I've put this thread in the right place.

I just made it through two months of the most severe pain I've ever had to deal with.  Worse than the gout that plagued me for years, far worse than the few broken bones I've suffered.

Blinding pain.  I'm sure you know what I mean.

My phosphorus was high, but my nephrologist sent me to the dentist.  They found a cavity in a wisdom tooth, so they pulled it.  No better.  It was generalized pain, throughout the jaw and teeth.  No localization when reduced with painkillers.  Hot, cold and pressure sensitive.

One trip to the ER in the middle of the night, just to have the doc ask, "well, what do you want ME to do?"  I answered "pain control."  I was sorely tempted to give a more creative answer.

I did the nerve blocker thing (Elavil, another "solution" almost worse than the problem), got my teeth cleaned again, did Sensadyne toothpaste and flouride applications, and was still eating painkillers like candy.  I just couldn't stay on top of the pain.  Since it was nerve pain, no matter how much painkiller I had in my system, one trigger event and I wasn't on top of the pain any more.

It's better now.  I took myself off of the Elavil --  I don't want to take it if it's not helping.  A couple of bad nights trying to sleep, but no increase of pain.  I'm still pretty sensitive, but I can control it pretty well with Tylenol.  I'm sure a long-term diet of Tylenol isn't the answer easier, but at least it's bearable.

Has ANYONE had this problem, or something similar?  The only thing my "wealth" of docs/dentists seem to be concerned about is keeping the DEA off their backs.  The most "advanced" research I've seen them do is a Google search (I kid you not). 

I'm concerned because it's still there in the background, and nothing we've done seems particularly responsible for its remission.




EDITED:  Moved thread to proper section - Goofynina/Moderator

[glitter]

I wish I knew how to help you  I don't really have any suggestions either

But I am sorry for your pain anyway it sounds like misery. Just a question ..do you grind your teeth at night when you sleep?

[Oc]

The doc and dentist asked the same question, glitter.  My pain is inconsistent with TMJ.  My dentist thinks I may "clench" at night, but my doc disagrees.  My lady says I don't do either, and I figure she'd know.  I also tend to sleep with my mouth open. 

I could buy into a nifty little "mouth appliance," but it's more than I can afford.  Seems like a stab in the dark as well, and I'm getting tired of those.

Thank you for the response.  I appreciate your thoughts.  I just can't imagine I'm the only person around who has experienced this.

[Oc]

While I'm posing the question, let me add another:

Part of this involved me exploring, let's say... "alternative" methods for controlling pain.  It's hard to ask my doc, though, whether something like THC dialyses out or builds up in the body.  It's not exactly something I want charted.  Anybody have any experience?

And please.... I don't know you folks, so I can't predict a response.  Suffice it to say that my need was immediate and dire.  It did help to a degree, but I feared the impact on my esrd.

Private Messages gladly accepted, if such openness is taboo here.

[vandie]

Holy Crap, OC.  I am sorry you are in such pain.  That must be so frustrating. 

[Oc]

It has been.  I'm happy like heck that it's better.  I'm just still a little skeered it'll come back in full force.  If it is something related to my levels, my concern is justified.  I have a heck of a time with my phosphorus.

Another good reason to be here.  I'm sure there's a wealth of advice regarding phosphorus.

[angieskidney]

It has been.  I'm happy like heck that it's better.  I'm just still a little skeered it'll come back in full force.  If it is something related to my levels, my concern is justified.  I have a heck of a time with my phosphorus.

Another good reason to be here.  I'm sure there's a wealth of advice regarding phosphorus.

It seems that your high Phosphate might be the cause. What are your PTH levels right now? If that is high too then this needs to be looked into immediately! I remembre my Nephrologist and nurse talking .. "Well her PHT is high .. how long has it been high? Oh all along? Think we should remove ther Parathyroids?" Gee ya think? Sometimes you need to be incharge of your own care and enquire about certain things! Once they removed my Parathyroids my phosphate was a lot easier to manage and I am no longer itchy all over and don't get the bone pain anymore (even though mine was never as bad as yours!)..

I did a search and found this: http://www.kidney.org.uk/Medical-Info/Calcium-Phosphate/index.html#15

What causes Pain in Bones and Joints?
Pain in bones or joints is a common problem in people with kidney failure, or with kidney transplants. It may be due to muscular sprains or arthritis which, of course, may occur whether there is kidney failure or not. Some types of bone disease may not cause pain, others can be painful. It is necessary to talk to your medical team to make a diagnosis – this webpage is only designed to give helpful information after a diagnosis has been made.

Types of bone disease that can occur in people with Kidney Diseases
Many people with kidney disease do not develop bone disease. However, if they do, there are several types that may occur. Some of these are related to the calcium and phosphate problems mentioned above, and others are not. Some types of bone or joint disease may have developed even if the person had never had any problem with their kidneys.

Some diseases frequently seen in people with kidney diseases are listed here. Other conditions seen less often (such as rheumatoid arthritis) are not included …Click here to go the Arthritis Research Campaign (UK) website which contains details on various types of arthritis.

• Bone disease due to high PTH (called renal osteodystrophy) 
• Adynamic bone disease
 

• Osteoporosis
   

• Osteoarthritis
   

• Amyloid
   

• Infection
 

• Gout

 

[Oc]

Wow, Angie.  Thanks for the info.  Yes, my pth has been high, and high for awhile.

What's the procedure like for removal?

[angieskidney]

Wow, Angie.  Thanks for the info.  Yes, my pth has been high, and high for awhile.

What's the procedure like for removal?

The Nephrologist would have to schedule the procedure for a parathyroidectomy but according to some here there are new meds to control the high PTH levels without removal. I would suggest getting all the facts before discussing it with the Neph just so that  you are on top of your care

[kitkatz]

There is a thread for parathyroidectomy somewhere on this site.  I started it because I am going in for one in November.

[angieskidney]

There is a thread for parathyroidectomy somewhere on this site.  I started it because I am going in for one in November.

Found it!!

[Rerun]

Whoa, Whoa Whoa......  Try Sensipar first.  It turns off your parathyroids.  There are some threads on this site regarding Sensipar.  

Stop chewing gum (if you do) it exacerbates nerve damage in the teeth.  Nerves take a LONG time to heal.  Just keep the stress off your teeth by not chewing hard candy, gum etc.

[angieskidney]

Whoa, Whoa Whoa......  Try Sensipar first.  It turns off your parathyroids.  There are some threads on this site regarding Sensipar.

 
Ya that is why I said this:

but according to some here there are new meds to control the high PTH levels without removal. I would suggest getting all the facts before discussing it with the Neph just so that you are on top of your care

Thanks for the name of the drug Rerun! I really wish my Neph had told me about that instead of removing my Parathyroids. Even my mom was worried about the removal being too hastey a decision!

Stop chewing gum (if you do) it exacerbates nerve damage in the teeth.  Nerves take a LONG time to heal.  Just keep the stress off your teeth by not chewing hard candy, gum etc.

I never heard that before. Is that a huge issue for dialysis patients?

[Rerun]

Angie, my dentist told me about the gum and nerve damage that is causes.  I was chewing gum because of stress, chew, chew, chew all day long.  I stopped and I healed.  Now I just have bad breath!   

[kitkatz]

Having bad toothache tonight. Going to call a dentist tomorrow for possible removal of a wisdom tooth.  Oh Lordy how I ache!  Pray for me.  I hate dentists and dread going to one.  Childhood fears are lurking there.  Can't sleep right now.  I have an excedrin and an aleve in me.  In four hours if I am not asleep I am taking 2 Vicodin and see of that will help.  Word of advice: Do NOT take a Vicodin after you have taken a binder.  Nothing happens.  No pain relief or nothing.  I think the binder negates it affects in the stomach.

[Rerun]

Sorry, Kit.  Hope you are asleep by now.  Can't believe you still have your wisdom teeth.  Why do they call them that?

[kitkatz]

Went to a dentist. Useless. Told me I had to see an oral surgeon to get tooth pulled.  No shit Sherlock.  I had to call around town and ask for an appointment.  Have to have consult then schedule it done.  Consult is on Thursday.  Surgery is? '
Painful.  I am eating vicodin and taking amoxicillin.  They say the pain will go away with the drugs.  Have yet to have it really go away.

[BigSky]

The doc and dentist asked the same question, glitter.  My pain is inconsistent with TMJ.  My dentist thinks I may "clench" at night, but my doc disagrees.  My lady says I don't do either, and I figure she'd know.  I also tend to sleep with my mouth open. 

I could buy into a nifty little "mouth appliance," but it's more than I can afford.  Seems like a stab in the dark as well, and I'm getting tired of those.

Thank you for the response.  I appreciate your thoughts.  I just can't imagine I'm the only person around who has experienced this.

No need to buy a costly mouth appliance.  I would go to a sporting goods store or walmart and buy a .99 football mouthguard and give that a try.

Bone problems can also be caused by high alkaline phosphatase levels.

[Oc]

Thanks for the amazing amount of information -- all of you.  I don't chew gum, but I understand the point.

The pain came back in full force, as I feared.  After a trip to the minor emergency clinic, the dentist and finally my GP (shopping for a new one now, as this one won't even answer calls from other docs), his NP decided to refer me to a neurologist and prescribed a Medrol dose pack.

Believe it or not, after one day on Medrol the pain was reduced to a tolerable level.  I'm now finishing up the pack, wondering whether the pain will come back again, but at least I've found something that works.  I'm wondering whether a maintenance dose (5mg or so) of Prednisone won't keep it at bay.  Nothing has even come close to alleviating pain like Medrol.

Anyway, thought I'd update everyone and express my thanks.  I will talk to my nephrologist about the options.