Topic : Living with Chronic Pain

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Created on : Thursday, July 07, 2005, 09:06:20 am
Author : dataimport
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January 10, 2008, 8:26 pm PST

Living with Chronic Pain

Quote From: mustbecrazy

I've been trying to keep up on everybody's messages, but I haven't been writing...don't take it personally...I've had a lot on my plate.

 

I have an appointment next week with the surgeon to evaluate my thyroid...I have thyroid nodules, which are "unlikely" to be cancerous according to the endocrinologist.  But, given my history of breast cancer and pre-cancerous colon polyps, I am exploring all options for treatment.  In talking with my older sister, I found out that my mom had pre-cancerous nodules in her thyroid when she had it removed.  That in mind, surgery is definitely on my mind...not that I am a big fan of surgery, but even if things turn out benign, I would have more peace of mind knowing that for sure.  The endocrinologist said that the two options for the nodules are surgery to remove the thyroid, or radio iodine, which will destroy the thyroid...either way, I'll be on thyroid meds for life...he said that the decision really is about my comfort level with the possibility of them being cancerous (low probability).

 

Our younger two sons have Long QT Syndrome, a heart arrhythmia inherited from me.  They had their annual EKGs, which, in the younger son, showed that the arrhythmia is active...that means a trip to Seattle to see the Cardioelectrophysiologist...a cardiologist who specializes in electrical problems in the heart...I wish that we could see somebody locally...Snoqualmie Pass isn't very nice to travel in the winter...Seattle is about 200 miles away.  Plus, our youngest son has high cholesterol...we are already on the Mediterranian diet, with very little red meat, lots of chicken and fish, plus veggies and fruits...I don't know what else the dietician can tell us...I think that this is a hereditary problem, as John had high cholesterol even when he was as skinny as a rail, at age 21. 

 

I probably already mentioned all of this...sorry for the repetition.

 

All of the stress is causing a Fibromyalgia flare-up...very sore muscles and joints...still, life goes on...

 

We are still doing the Cub Scout and Band things.  Our middle son is getting ready for Solo & Ensemble contest at the beginning of February...he still has a long way to go...I'd like to see him further along...if he works hard on it, he can do a good job...I have to keep after him to practice every day.  Next week, for Cub Scouts, I am teaching the leather working segment...the kids will be making a knife pouch, and a stamped neckerchief slide.  Then, I will be teaching some other craft projects...that's what I love to do...crafts.

 

I hope that everybody is well today...minimal pain...we've got sunshine, after a night of snowfall...very pretty...after I got done with the shoveling (when it snows overnight on a school day, I do the shoveling.)

 

Becky

hi becky,

 

i know i cannot take your thyroid worries away, but just wanted you to know that taking the thyroid meds is an easy thing, even if "for life"!  if i were a betting woman, i'd wager that your node biopsy/removal will show hashimoto's thyroiditis -- an auto-immune disorder characterized by inflammation.  should the nodes be cancerous or pre-cancerous, you're well situated to take care of the situation.  thyroid cancers are -- so i was told -- very slow growing.

 

was it you who found out you were *hyper*thyroid?  funny, because with all the fatigue and sleepiness, i thought for sure it would turn up *hypo*thyroidism.  (if i am confused i know you won't be surprised!)

 

your middle son -- he has the long qt syndrome, but it is not active?  how does that work -- he is screened annually -- but is he ever declared free of the syndrome?  all my best wishes for the youngest and that treacherous trip through the pass.

 

those scouts are lucky to have you, becky!

 

i'm sorry for the flare -- can you get to the chiropractor?

 

hang in there in the calm middle of the storm!

prof

 

 

 
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January 10, 2008, 9:14 pm PST

answers to your questions

Quote From: profderien

hi becky,

 

i know i cannot take your thyroid worries away, but just wanted you to know that taking the thyroid meds is an easy thing, even if "for life"!  if i were a betting woman, i'd wager that your node biopsy/removal will show hashimoto's thyroiditis -- an auto-immune disorder characterized by inflammation.  should the nodes be cancerous or pre-cancerous, you're well situated to take care of the situation.  thyroid cancers are -- so i was told -- very slow growing.

 

was it you who found out you were *hyper*thyroid?  funny, because with all the fatigue and sleepiness, i thought for sure it would turn up *hypo*thyroidism.  (if i am confused i know you won't be surprised!)

 

your middle son -- he has the long qt syndrome, but it is not active?  how does that work -- he is screened annually -- but is he ever declared free of the syndrome?  all my best wishes for the youngest and that treacherous trip through the pass.

 

those scouts are lucky to have you, becky!

 

i'm sorry for the flare -- can you get to the chiropractor?

 

hang in there in the calm middle of the storm!

prof

 

 

Long QT syndrome is genetic, and the arrhythmia can be transient.  I didn't make myself very clear, I guess.  What I meant to say was that the EKG for the youngest one showed that the T wave was abnormal, and that the QT interval was long.  All of his previous EKGs have shown normal rhythms.  We all have the gene for it, but the arrhythmia doesn't always show up on EKG.  The fact that it DID show up on EKG says that he actually has the arrhythmia going on, not just the genetic tendency.  We all have to be careful not to let our pulse rates go above 140 bpm because fast heart rate can send the heart into a fatal arrhythmia.  Sometimes, the first symptom of Long QT Syndrome is sudden death...really want to avoid that one.  Both boys will be going to Seattle, as now the trend is for the doctors to be more pro-active in treating it.  The drug to treat it is a beta blocker.  The reason that none of us are currently on it is that it can make asthma worse and negate the effects of the rescue inhaler...but we may have to re-think the risks, with the arrhythmia showing up on an EKG.  We have asked the PE teacher to keep a good eye on the youngest one and not to let him over-do it...tell that to a 9 year old!!

 

With weight gain, hair loss, and fatigue, I was sure that the thyroid would have been low, but apparently, these are also signs of high thyroid, along with over-active bowels, heat intolerance, anxiety, etc.  I was surprised to find out that it is high.  The nodules in my thryoid are producing the excess thyroid hormone.  It doesn't bother me to be needing to take thyroid meds for life after the treatment for the nodules (surgery or radio iodine)...taking pills is easy.  The doctor said that it is not hashimoto's, nor is it Grave's disease.  I guess he could tell this from the results of the thyroid scan and blood tests.

 

Thanks for the encouragement...Becky

 
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January 11, 2008, 1:48 pm PST

a two-fer!

dear dianah and becky,

 

ahhhh!  bless hank's bones.  i am ashamed to say that i hid in the bathroom until i heard the sound of the coffee grinder and the cats being fed.  i hurt so bad that getting to the bathroom felt like a tremendous accomplishment.  so, after i was sure he had done all the morning "duties," i emerged, trying to come up with an excuse to avoid the gym.  and the first thing he said -- after "good morning" -- was "i hope you don't mind but i think i'll skip the gym -- i am pretty sore... i guess i will do the grocery shopping." god bless the man.

 

i pretended to be disappointed!  still, i made it 6 out of the last 8 days -- and i am proud of myself.  yesterday was idiotic -- crying while working out -- what was i trying to prove?  what these very high levels of pain are pounding into me, is the certaintly that i need a pain pump.  i am wearing 2 fentanyl patches at a time (one "old," one "new" -- changed every 48 hours) and maxing out the breakthrough medication and ibuprofen.  this is just ridiculous.  it will take me a long time to get the pump, and i may fail -- i've been told that bcbs is notorious for refusing to cover them -- but clearly, something has to give.

 

becky, i am familiar with cardiac meds that have scary side effects.  i have runs of paroxysmal supraventricular tachycardia -- just gives me a strange, weak feeling, but when i am on a monitor, it sure makes the nurses break into a run!  i was put on several meds -- finally, something called "rythmol."  oy!  talk about a medicine causing more trouble than it was worth... in the end, i stopped all medication -- i kept passing out.  my blood pressure is naturally very low, but in combination with most antiarrythmia drugs, it bottoms out.

 

lordy -- the first symptom can be sudden death.  that's very scary.  thank goodness for the genetic testing you were able to have -- so that you can be on top of it.  good for you.  i'll think good thoughts for the boys.

 

the reason i thought of hashimoto's was because it is auto-immune and sometimes goes hand-in-hand with fibromyalgia.  but that would mean hypothyroidism, and you are hyper... i didn't know that you could have the same symptoms.  what a tricky gland. 

 

miss dianah, what can i tell you about dobby lad?  he's my little idiot, lives in his own world -- he hasn't picked up some of the more common cat behaviors.  for instance, he doesn't at all mind staring at you, with you staring back.  most cats treat that as a sign of aggression, and will quickly look away.  not the dobbster!  he will stare at you, then initiate a long-winded, one-sided conversation.  he has so much to say.  he continues to drop his most important things into the water bowl -- yesterday, hank had an electronic part delivered, set it on the floor by his office chair, only to find it gone a few minutes later... he was so pissed!  we looked everywhere, and finally found it -- you guessed it -- floating in the water bowl!  it was in a tiny plastic bag, thank goodness.  hank fussed at dobby, dobby just stared back...

 

lashawnna has had so much sadness in her life -- it seems to follow her.  she deserves a break, just a period of normalcy would probably be appreciated. i wonder how the children are doing, and her pregnant daughter.  when is she due, do you remember?  (you are the repository of all knowledge!)

 

speaking of canes... i bought a new one over the holidays!  there is nothing special about it, except that it is cute (as cute as a cane can be).  it has a design of blue and purple flowers and buds!  a feminine cane -- for those times when a plain cane just won't do. (ar!)

 

i'm sorry you're having trouble sleeping -- that's the pits... for the past week or so, i have been awake between 5 and 8:30 every morning.  we go to bed around 3 or 4, so that means i have developed a bad habit of not getting up until noon.  i hope you're right and that you were just missing hubby last night... and i will try and get to bed at a reasonable hour.

 

howard, tw (tumbleweed), seems to be an amazing individual -- though i may be prejudiced.  there is some potential drama brewing between myself and my other brother -- he may have known where and how howard is, and not told me.  when i was on the phone with him wednesday night, i kept asking him if he had something to say to me (i had sent him a very clear, explicit email) -- and he kept saying, "no."  i had written that i had howard's address and info, and would give it to him if -- and only if -- he wanted.  according to a new found "cousin," he had been given howard's info two or three years ago.  i have tried to bury the significance of that... but without success.  so i asked him straight out... and he cannot or will not answer.  why do people do such things?  i will love and adore him forever, trusting that he thought he was doing "what was best" for his "little" sister -- but...

 

too much drama.

 

have you decided whether you're going to have surgery on your hand/arm? 

 

i'm hungry... gonna go open a can of lentil soup...  be well, youse guys!

 

love.

prof

 
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January 12, 2008, 2:12 am PST

Living with Chronic Pain

Quote From: comer1

 Good morning Friends!

I am almost afraid to put this down in print for fear of a jinx but....okay....here goes..... I am actually feeling better today than I have in over a year!!  My hand is not flaring - no little feelings of shock waves -- no swelling -- no pain -- I actually woke up and didn't feel exhausted like I always do.  Makes me afraid to start wondering what is going on!!!  I only wish you all the same luck that I am experiencing right now.  I had to share with my chronic pain buddies!!!  WA HOO..(at least for this morning!)

Still having some marital issues but am hoping something can be worked out.  We've been married for 25 years so it seems ridiculous at this point that we can't work something out.  Not to burden you all with my "junk" but I believe that my husband is an alcoholic.  My father was and all of the signs are there.  It has gotten progressively worse and he won't accept the possibility or get any help.  It's really bad.  And then I beat myself up for basically repeating my own childhood by marrying into something like this.  He wasn't AS bad when we married but looking back with my now 20/20 hindsight vision, he has always had this problem -- it has just gotten worse.  I thought that since he was not as 'bad' with it as my own dad was that it would not be an issue.  So I feel pretty stupid -- got busy raising my 4 kids and now that only one is left at home, I think I am really noticing this problem.  CRAZY< HUH??????  Sorry to burden you guys with all of this --helps to get it out.

Prof- How are you feeling?  I'm sorry to hear that your face is starting to have some effects.  I had no idea rsd/crps could go into anything but our limbs!!  You take good care of yourself - glad you got out to Red Lobster. That place is THE BEST!!

Dianah - hey girl -- you hang in there.  I went back to work on the 2nd and it hasn't been too bad but only because I've been feeling good. Our company is still in dire financial straits and the 'word on the street' is there is only a couple of months more of survival.  I am punching up the ole resume but not sure how things will go.  We'll see -- I will keep my fingers crossed and my prayers going that you are able to get back to work -- hope you feel better soon!

Maggie - you've been on my mind and I am hoping you are okay.

Lashy - where are you??  We miss you here.  Haven't heard from you in the longest time.  Hope you are okay.

Morgan - same for you, sweetie.  How are you??

Everyone else and I'm sorry not to mention everyone by name -- thinking of you all daily and hoping everyone is okay and happy and healthy in 2008!!!

All my love,

Debbie

Debbie,

I've finally managed to get myself on to the computer again and saw your post and I hope you aren't beating yourself up too much, about his drinking.

 

My ex-fiance is an alcoholic and I too grew up with an alcoholic father.  K (my ex) and even swore to each other that we'd be 10 miles down the road the first time one of us exhibited alcoholic behavior (his dad drank too).  But slow alcoholism builds, tiny rock by tiny rock, until suddenly you realize you can't climb over it or even see past it.  K hid his drinking for years and when it finally came out his friends were shocked that the "buddy" they did occasional bar thing with was putting shots of Bailey's in his morning coffee- to drink on the way to work (hell,that one even shocked me and I lived there!).  I look back at the early stages of our relationship now and I can see it all laid out, all the stages and things I missed- but that's the nature  of living, I think.   When we're living it it's too hard to be looking everywhere at once : )   I am, though, sorry you are having trouble.  Especially this kind, just having been there.  I wish I had any words of wisdom, or even just advice!, but I don't, except to say that I really do hope you aren't knocking yourself for missing signs or such - drinking that seems normal at 21 can slowly be very abnormal later on.

 

Other than that I hope you are doing well and hanging in there and not in too much pain so you can enjoy your weekend!

 

Love,

K

 
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January 12, 2008, 2:36 am PST

Negligent poster

I was typing in a huge post, which disappeared....AHHHHHH!

 

Will post more soon...I'm "ok"-waiting for big cerebral angiogram. moved into neurology sub-specialists- that can't be a good sign.  Migraine is still here but fading a bit.

 

PROF- I will do a treatise on the pain pump for you. Remind me though,why not a SCS? I mentioned to my pain doc that your RSD had moved into your face and he said a SCS could treat that. I don't think it's possible to have a pain pump work that high up though....but maybe it could.  I'm sorry your pain is still so awful. I'm always hopeful that I'll pop on here and find it's dropped down - even to last spring's levels- again. 

 

EVERYONE - I hope that y'all are staying warm and having "good" pain levels.  I will come back and talk to everyone, not trying to be rude, I just saw Prof's request and saw pain doc earlier this week. 

 

Have a great Saturday!

 

Love,

K

 
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January 12, 2008, 11:59 am PST

Sat Morning Hello Everyone...

Hi there

 

Another bad night at the sleeping thing.. 3 AM was my calling and up at 10... this is not ME....

 

Woke up with it snowing and now stopped..

 

KARIN.. Talk about making me smile first thing this AM.. here you are... Can't wait to hear all the details of everything going on with you...

 

Prof.. Duh on my part.. Lost Ms Maggie's e-mail address with the "crash"...

I swear Dobby has "raccoon" in his blood lines..  maybe a mini swimming pool on the deck this summer will keep him happy...

I answered an un-know call this morning and it was oldest Step-Son.. I am thinking it's been two yrs since we talked and it was "pleasant" and "un-nerving" at the same time.. Not my idea of a great way to start the weekend...

 

Very quiet in the house and it's Nice.. Should get crazy after 4, when hubby leaves..

 

I should be getting ready for our vacation, but did you get that one.. should....

 

My Grandma is having hip problems and also the treatment for her breast cancer hit her very hard this week.. So, thinking I will make a trip in to town in the morning and check on her and do a few things around the house for her, of course, on my own time... I'm just "love her" and she's family now..........

 

Laugh Laugh, my so called pay-checks from this company is a joke and I pick them up every two to three weeks... ha ha ha.... but, now matter what I decided to do.. she will be the top priority as long as I am able.. Sad to wonder if she'll out do me.... heeee ha ha ha...

 

Okay...

 

Too much coffee and sure hope no one else calls or I'll take their ear off.....

 

I am missing everyone and just hope that busy is what is keeping them off the keys here...

 

Sending everyone a hug and hope for this Sat...

 

Love Dianah

 
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January 12, 2008, 6:53 pm PST

Continuing RA treatment

Hello,

 

Previously I have posted a short message about my history with JRA or adult early development of RA. Well, I have some new news (insightful as good or just more puzzling, still undecided).  As of this past year several new dx's have been made.  First my headaches, which I usually just ignore and sleep them off with cat naps, was dx as migraines and seizures. Second, practically all the major beneficial food groups cause indigestion problems (allergic to them).  Third, finally dx my swallowing problem through an incidental observation by a nurse during an office med visit. Which lead to other tests dx's as a stricture. 

Finished undergraduate school and now I am almost finished completing my masters.

 

All this stuff ended with 2007. As of 2008 my current Dr. wants me to try a Med trial in hopes that it will slow down my steady progression.  So on the upbeat, new meds will hopefully work, finish graduate school this year, have no other illnesses creep up is my new years resolution.

 

thanks for allowing me to vent my thoughts about dealing with lifetime of pain, fatigue, frustration

Have a happy new year.

sprinkly

 
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January 13, 2008, 9:29 am PST

Sunday Morning Hello Everyone

Good Morning

 

Had a note from our girl Pickles this morning. She can not get on the board for some reason, but she asked me to tell Everyone Hello.. Prof... she asked to send you a special hello and miss you..............

 

She is waiting for her Son to get her new computer going and then should be back up and running full force.. She has some "exciting" news to pass along and I won't blow it.. But, it's a Yahoo.......................

 

Also, had a note from our girl Lashy this morning..

Her friend passed away. She was working at a connivance store and some guy held her hostage for two hrs and was distraught over a death of someone and he ended up shooting her and she held on for a day and then passed.

So, Lashy is helping the family and doing her best to hang tight......

 

Okay........

The middle man is done with the up-dates...........

 

Hope the weekend is going well for Everyone..

 

I'm going to the movies and dinner tonight with my daughter in-law. Going to go see.. PS, I love You.. its a chick flick and looks really cute...

 

All my love and hope... Dianah

 

 

 
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January 13, 2008, 9:54 am PST

JUST ME

I'M back from burying my daughter in Conn. Was there for three  days. She was cremated. And buried with her baby under some trees near a salt water river. Her fiancee was kind, so was his Dad and I really liked His Mom.  Some people there treated me like I was  EVIL and some treated me with kindness. I want to personally thank PROF, DEBBIE, BECKY KARIN, AND BECCA, FOR all the kind words and the encouragement you gave to me, I know that because of your friendship and your kind words, I was held together, along with my daughter's fiancee and His Mother's support. It was a difficult time and still is for me. I still am having a hard time believing that my daughter, Tina, is gone. May she rest in peace. God Bless.      Maggie
 
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January 13, 2008, 11:20 am PST

Living with Chronic Pain

Quote From: maggie55

I'M back from burying my daughter in Conn. Was there for three  days. She was cremated. And buried with her baby under some trees near a salt water river. Her fiancee was kind, so was his Dad and I really liked His Mom.  Some people there treated me like I was  EVIL and some treated me with kindness. I want to personally thank PROF, DEBBIE, BECKY KARIN, AND BECCA, FOR all the kind words and the encouragement you gave to me, I know that because of your friendship and your kind words, I was held together, along with my daughter's fiancee and His Mother's support. It was a difficult time and still is for me. I still am having a hard time believing that my daughter, Tina, is gone. May she rest in peace. God Bless.      Maggie

dear sweet maggie --

 

it must seem like a nightmare.  ignore the mean-spirited people who treat you badly -- they have no cause to, and are just ignorant... well, let's just leave it at that.  know that we love you, are with you, hold you gently in our arms.  please take care of yourself -- don't let the grief make you ill.  eat well, get enough sleep, take your medications.  you are still alive, and there are wonderful reasons for that.

 

love,

prof

 

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