OK I think at least for today I give up....I cry uncle!

[Sugar_and_Spice]

I keep begging my husband to move to a more...forward thinking state! There's only so far up you can go on pain meds and I've just about hit that ceiling!

It really is funny how different areas feel about pain meds. I have Fibromyalgia and my old docs in Northern VA had no problem giving me pain meds and Elavil for anxiety attacks. But here in Southern Va I've got docs who won't give me any pain meds and all they'll give me Flexeril for muscle pain and anxiety. And it just doesn't work! I need to find a Rheumetologist, but the thought of trying to find a new doc I like is too stressful. I guess I'll just have to break down and do it though.

Well, I could write a book on the subject but let me suffice it to say,,,, It is really up to the doctors...and when they say they are practicing medicine they aren't lying....they ain't got it right yet!!! Can't tell you how many dr's I been through. so I am now so much bolder than I used to be.....when experiencing a new dr. I just flat tell them, what works and what doesn't for me...and then ask them if they are able to help me....if not, don't waste my time and theirs. It never ceases to amaze me that a dr that sees you, for what all of 3 minutes, thinks they know your body better than you do. And just to give a little hint on where I work(can't really say where) but it is one of the Nations largest institutions. And I am not a nurse, just an IT specialist, but still have to know quite a bit about the medical profession. Well, here I am writing a book, so I'll stop now.....(rant off)
Thanks for listening......stay tuned for breaking bulletins lol

sas

 

[Amy the Addicted Nurse]

It really is funny how different areas feel about pain meds. I have Fibromyalgia and my old docs in Northern VA had no problem giving me pain meds and Elavil for anxiety attacks. But here in Southern Va I've got docs who won't give me any pain meds and all they'll give me Flexeril for muscle pain and anxiety. And it just doesn't work! I need to find a Rheumetologist, but the thought of trying to find a new doc I like is too stressful. I guess I'll just have to break down and do it though.

I've got fibro too...among other things.
yeah there's this huge new campaign in SC about cracking down on pain meds. Makes me so dang mad! Getting pain relief and thus a better quality of life, should not be a crime! and that goes for alternative substances too!

I'd give up all my pain meds for the alternative some states offer! and for someone on fentanyl, oxycodone, flexeril, and Klonopin for sleep/panic attacks that's saying a lot about how much better the alternatives can be for people! Kinda sounds like the PV issue doesn't it?!

and sadly Rheumatologist and pain clinics did nothing for me, except tell me there was nothing wrong with me except that I'm a drug addict my MRI's, EMG's and proven pain record, along with the fact that I've never once been "that" patient that's always calling with excuses and begging for more pain meds...means NO I'm NOT a drug addict and it's NOT all in my head. I'm lucky to have once worked for a very good Neurologist who I now see as a patient, he's been a life saver. However, I just proved him wrong about my thyroid, he said it was fine. I said it no wasn't. And what do you know my blood work came back with NO thyroid function at all. Since starting synthroid many of my fibro symptoms are improving so I am now even more convinced that (at least for me) my fibro is totally related to me having a up hormone system. Which also convinced me the reason why in 12yrs with my husband, using no BC ever I've only gotten pregnant once . I'm saving up some money to go here All Natural Bio Identical Hormone Replacement Therapy Specialist look to see if you have such a place near you.
Finding new doctors is very stressful! If I can't get in with the HRC place soon I'm gonna have to find a endocrinologist that will treat me with the bio-identical hormones...I need a Klonopin just thinking about it!
(gentle hugs fellow fibormite!)

 

[Sugar_and_Spice]

I've got fibro too...among other things.
yeah there's this huge new campaign in SC about cracking down on pain meds. Makes me so dang mad! Getting pain relief and thus a better quality of life, should not be a crime! and that goes for alternative substances too!

I'd give up all my pain meds for the alternative some states offer! and for someone on fentanyl, oxycodone, flexeril, and Klonopin for sleep/panic attacks that's saying a lot about how much better the alternatives can be for people! Kinda sounds like the PV issue doesn't it?!

and sadly Rheumatologist and pain clinics did nothing for me, except tell me there was nothing wrong with me except that I'm a drug addict my MRI's, EMG's and proven pain record, along with the fact that I've never once been "that" patient that's always calling with excuses and begging for more pain meds...means NO I'm NOT a drug addict and it's NOT all in my head. I'm lucky to have once worked for a very good Neurologist who I now see as a patient, he's been a life saver. However, I just proved him wrong about my thyroid, he said it was fine. I said it no wasn't. And what do you know my blood work came back with NO thyroid function at all. Since starting synthroid many of my fibro symptoms are improving so I am now even more convinced that (at least for me) my fibro is totally related to me having a up hormone system. Which also convinced me the reason why in 12yrs with my husband, using no BC ever I've only gotten pregnant once . I'm saving up some money to go here All Natural Bio Identical Hormone Replacement Therapy Specialist look to see if you have such a place near you.
Finding new doctors is very stressful! If I can't get in with the HRC place soon I'm gonna have to find a endocrinologist that will treat me with the bio-identical hormones...I need a Klonopin just thinking about it!
(gentle hugs fellow fibormite!)

grrrr.just proves my point that dr's think they know more about our bodies than we do.....can't tell you how many drs I have to prove my case too. My rheumatologist, has actually been of some help for me....I am currently on a very high dose of vitamin D weekly, 50000. units ...and believe it or not , Plaquenil...has really helped me a great deal...I was lucky to have found him...was researching drug studies for my sister(who, btw is a reg. nurse) for gout patients...she has one of the worst cases drs have ever seen...Well, in working with him for her, I had to be tested also and they found that I did not have gout(thank god) but I do have ra. along with reg arthritis. and an underactive thyroid, and others too numerous to mention.
That might be a good place for you to check Amy and others...look at the clinical trails(will post link later) for drs in your areas that might be doing studies on your ailments....Lots of them are funded by drug companies and actually pay for participation. Just a thought....let me know if you are interested, and I would be glad to help in the search.

sas

 

[Nokisu]

I'm sorry, that's so sad.

 

[Moonflame]

They started me on Savella last year for Fibro and it's worked pretty good for pain reduction (probably down by about 50%), but there are days when pain meds would be a godsend. I've been with hubby 21 years and not on BC for almost all of that and we only have 2 kids (19 and 7). I had a tubal when I had the 7 yr old since it was a planned c-section, figured since they had me open already I might as well. She was my gift baby, conceived on Christmas, born on our anniversary, and got her first tooth on my birthday .

After hubby almost died from a dissected aorta last May (came within a mm of his heart and went all the way down to his groin) I went thru a period of daily panic attacks for months. Between the stress of his surgery and recovery, the work of taking care of everythig he normally took care of around the house plus taking care of him, and the financial mess from him being out of work for 4 months and only part time for 4 months after that, I was a mess. Thankfully he's back to normal, other than being on blood pressure meds and a yearly CT Scan for the rest of his life. They put me on Buspar to manage the panic attacks, and it mostly works. I just don't understand why they'd rather have me on something all the time than just take something when it's needed. It would probably help if I could get my old records and they could see how long I would go between refills when I was on Elavil and Vicodin, but I've sent for my records repeatedly and they haven't sent them. I really like my new GP other than his reluctance to give some meds and he's only 15 mins away, which is a bonus when you live in the middle of nowhere. The closest McDonalds is 22 miles and the closest 7-11 is 50 miles away. It was hell learning to live without a daily Slurpee .

 

[Nokisu]

Trying to get ready to take my son to the park. we've been having a rough go of it lately and wanted to do something nice for him...but as usual he's himming and hawing and arguing about everything.

I stopped to clean the litter box and just as I scoop I hear a loud crash and a wiff of sweet smells hit me...the cat jumped up onto the very high shelf I had all of my equipment and 12 open,steeping bottles of juice...it's all gone I only managed to save a few drops of a few flavors. The rest is seeping into the carpet.

UNCLE! Uncle I give!

ps...yes I soaked up as much of the juice as I could and put a towel & rug over the area to keep the cats...one with a very sweet tooth, away from them.

pss...no I didn't kill the cat...yet

psss...now my son is even more ...... at mommy cause she cursed out his cat

Uncle I said! Off to the park

I'm so sorry for your loss. It takes what seems like an eternity to get new juice.
I want a cat...had a few in the past, but you remind me that they can jump onto everything and make a mess in the process, lol. I'll just have to steep my bottles in a cabinet with closed doors.

 

[Empress Kitty]

I've been on so much for my rsd it's insane. I was taking 14 pills a day of this and that and I couldn't deal with it anymore.
I'm on fentanyl transdermal patches 50 mcg/hr and 10/325 oxycodone
Had infusions injections scs implant trial IT morphine trial (nearly killed me tyvm) among many pills. They wanted me on elavil and Sevella but I can't afford it.
Pain meds may not work well but it's all I can afford and it keeps me from being in so much pain death seems like an actual option.
I f......g HATE drug addicts they are effing it up for those of us with real problems.
I've never even felt a "high" on my meds just pain reduction but been on opiates so long if I don't take them I withdraw and it's hell.
I bet there's a reason pain meds are so cheap ($20 a month for both scripts whereas Sevella and elavil are 75-80$ per month EACH)

 

[Moonflame]

Thankfully insurance covers the Savella because otherwise it'd definitely be too expensive and it'll be a few more years until they come out with a generic. Vicodin doesn't make me high either, but try explaining that to a doctor. I'm stuck taking 8 motrin at a time for pain relief and it takes the edge off enough to keep me from just sitting and rocking and wishing I was dead. I don't think that anyone who hasn't suffered from a chronic pain disorder has any idea how debilitating it is. I feel so bad when I have to tell my 7 yr old she can't have friends over because I'm in too much pain to deal with anything I don't absolutely have to.

 

[Amy the Addicted Nurse]

grrrr.just proves my point that dr's think they know more about our bodies than we do.....can't tell you how many drs I have to prove my case too. My rheumatologist, has actually been of some help for me....I am currently on a very high dose of vitamin D weekly, 50000. units ...and believe it or not , Plaquenil...has really helped me a great deal...I was lucky to have found him...was researching drug studies for my sister(who, btw is a reg. nurse) for gout patients...she has one of the worst cases drs have ever seen...Well, in working with him for her, I had to be tested also and they found that I did not have gout(thank god) but I do have ra. along with reg arthritis. and an underactive thyroid, and others too numerous to mention.
That might be a good place for you to check Amy and others...look at the clinical trails(will post link later) for drs in your areas that might be doing studies on your ailments....Lots of them are funded by drug companies and actually pay for participation. Just a thought....let me know if you are interested, and I would be glad to help in the search.

sas

oh yeah I've had it up to here with doctors thinking they know me or my son's body better than I do!
example one: I KNEW he had food allergies but no one would listen to me for years and as a result he spent the first 5 years of his life always sick, always on meds for one infection or another (usually ears/throat) and had 4 surgeries (ear tubes, tonsils, adenoids, and more ear tubes). Once I FINALLY found a doc to listen to me it was confirmed he has peanut and milk allergies. And the peanut was close to becoming anaphylactic since at the time b/c of his sensory and food eating issues he was living on peanut butter. take away the milk and peanuts and suddenly I've to a kid who's never sick!

example 2:
My "new" Hypothyroidism dx. I've told doctors for at least 10 years that I thought my thyroid was messed up. EVERY SINGLE TIME they told me my blood work was fine. Then 2 months ago after another 20lb weight gain in less than 3months along with the fact that I literally could and did sometimes sleep ALL day & night and still be tired exhausted. I brought it up again and he looked back at last years tests and said "hmm well your labs last year were a little low" after making him let me see them I find out that it wasn't "a little low" it showed basically NO THYROID function AT ALL. Then he says "we'll recheck & if it's the same or thereabouts we'll start you on something" Yay I think, I knew I wasn't crazy all these years! I knew my thyroid was messed up!!
Days later the nurse calls and gives me my numbers...lower than last years...and then says "but he's not gonna start you on anything right now" The he's NOT! YOU HAVE HIM CALL ME IMMEDIATELY! His chicken never called but his nurse did the next morning at like 7am with a Rx called into the pharm. It's been a little over 2months on synthroid and I am amazed at the improvements...still have a long way to go but I'm getting better and feel like a huge chunk of my problems have been hormone related. I've been suffering for all these years for NOTHING! I still need to find an Endo that will treat the T3 & T4 problems with bio-identical hormones. But it's a start.

I'm also doing loads of VitD, I have a Paralytic colon which makes vitamin absorption difficult...and I'm a sun lover, don't use sunscreen and spend all my summer days at the pool, and I still have low VitD. go figure

eh I'm a bit of a conspiracy theorist, don't trust doctors, the government, FDA, or big Pharm among others. I've seen too much of what goes on behind the doors of doctors and big pharm. I won't take any medication that has not been on the market longer than I have been alive and I wouldn't ever do a clinical trial...but that's just me and my decisions, I make no judgment on people who decide to go such a route.

 

[Amy the Addicted Nurse]

They started me on Savella last year for Fibro and it's worked pretty good for pain reduction (probably down by about 50%), but there are days when pain meds would be a godsend. I've been with hubby 21 years and not on BC for almost all of that and we only have 2 kids (19 and 7). I had a tubal when I had the 7 yr old since it was a planned c-section, figured since they had me open already I might as well. She was my gift baby, conceived on Christmas, born on our anniversary, and got her first tooth on my birthday

Wow this is a little freaky, My son is 7, and my gift baby. Christmas eve while at work some co-workers who knew my troubles getting pregnant prayed and laid hands on my stomach and he was conceived that night, on Christmas eve. Then I found out on my 29th birthday that I was pregnant. So I'm guessing your gifts birthday is around September 20th or so? We'll have to have our own little celebration this year...8 I'm still hoping for another gift, but every month for the last 6yrs my body fails me ...I always planned on having 10 kids yeah I know. DL is my whole life and I couldn't possibly love him more than I do...but I still pray for one more

Glad you and your husband are doing better! (I've never heard of Savella)
Wow you do live out in the middle of nowhere!

 

[Amy the Addicted Nurse]

I'm so sorry for your loss. It takes what seems like an eternity to get new juice.
I want a cat...had a few in the past, but you remind me that they can jump onto everything and make a mess in the process, lol. I'll just have to steep my bottles in a cabinet with closed doors.

thanks, but thankfully some awesome ladies I've met here have been taking care of me with wonderful care packages of juice!
yes! get a kitty, they are the best! and while at the hardware store today I found a perfect tackle box to put all my stuff in...and it's purple (my fav) and pink so it helps with the not feeling girly cause my Riva is black...I know I'm crazy

 

[Amy the Addicted Nurse]

I've been on so much for my rsd it's insane. I was taking 14 pills a day of this and that and I couldn't deal with it anymore.
I'm on fentanyl transdermal patches 50 mcg/hr and 10/325 oxycodone
Had infusions injections scs implant trial IT morphine trial (nearly killed me tyvm) among many pills. They wanted me on elavil and Sevella but I can't afford it.
Pain meds may not work well but it's all I can afford and it keeps me from being in so much pain death seems like an actual option.
I f......g HATE drug addicts they are effing it up for those of us with real problems.
I've never even felt a "high" on my meds just pain reduction but been on opiates so long if I don't take them I withdraw and it's hell.
I bet there's a reason pain meds are so cheap ($20 a month for both scripts whereas Sevella and elavil are 75-80$ per month EACH)

girl don't you know it! I'm on Fentanyl 75's and oxycodone's too! OMG withdrawing is the worst! and I start if I'm just a few hours off changing my patch. I don't and haven't ever gotten "high" on my meds...and sadly I don't get much pain relief anymore either. It seems like I build up a tolerance for things really fast...I'm wondering if that's got anything to do with why I got good TH's with the 24mg juice and after a week I get nothing. IDK?

SC just started this big crack down on prescription drugs which makes me madder than heck! It's why even though my pain issues are real my doc has been afraid to increase my meds despite the lack of relief I'm get...at this point I feel like I'm mostly taking it so I won't start withdrawing. And w/ding from Fentanyl is one thing you do not wish for at all!

 

[Amy the Addicted Nurse]

Vicodin doesn't make me high either, but try explaining that to a doctor...I don't think that anyone who hasn't suffered from a chronic pain disorder has any idea how debilitating it is. I feel so bad when I have to tell my 7 yr old she can't have friends over because I'm in too much pain to deal with anything I don't absolutely have to.

this, this, this! the last few years I really went downhill...at just the time I should have been doing play dates and going to the park everyday. My mommy guilt stays so high because of this! I just cry every time he says "but you don't ever feel good enough to play with me" I just know he's gonna hate me when he grows up...heck I feel like he does already

 

[happysunshyne]

this, this, this! the last few years I really went downhill...at just the time I should have been doing play dates and going to the park everyday. My mommy guilt stays so high because of this! I just cry every time he says "but you don't ever feel good enough to play with me" I just know he's gonna hate me when he grows up...heck I feel like he does already

Aw mama, NEVER feel like your son hates you. I guarantee you are the most important person in his little life. It's just hard for little ones to understand that sometimes grown-ups don't feel well.

 

[Moonflame]

It so sucks when you have to look at their little disappointed faces when you tell them they can't go somewhere they panned or do something they have their heart set on. I figure they'll stop hating when they have kids and realize we aren't just big meanies.

My little one's birthday is Sept. 10th since they wanted to do it early enough to avoid any chance at labor. My son was 18 days late and that was the longest 18 days of my life. I'd given up completely when I got pregnant with my daughter, to the point where it took me about 2 weeks to even suggest that it was a possibility to my husband and he laughed his .... off at me thinking I might be pregnant. The look of shock on his face when the test was positive was priceless.

 

[Amy the Addicted Nurse]

It so sucks when you have to look at their little disappointed faces when you tell them they can't go somewhere they panned or do something they have their heart set on. I figure they'll stop hating when they have kids and realize we aren't just big meanies.

today that disappointed face was b/c I was too tired to make him some salsa (only veggie's he'll eat and I have to make it by the gallon!) He cried so bad I just had to make myself get up and do it. His happiness was worth the pain it caused to get up and make but it! I wish I didn't ever have to tell him we can't do something b/c I hurt too bad ever again!

My little one's birthday is Sept. 10th since they wanted to do it early enough to avoid any chance at labor. My son was 18 days late and that was the longest 18 days of my life. I'd given up completely when I got pregnant with my daughter, to the point where it took me about 2 weeks to even suggest that it was a possibility to my husband and he laughed his .... off at me thinking I might be pregnant. The look of shock on his face when the test was positive was priceless.

Well then they are 10 days apart! That's so cool!
I took 5 tests before I REALLY believed but Jody knew as soon as I told him...If it ever happens again for me it will be even worse. I'll have to have blood tests and ultrasounds to prove it to me now that doesn't stop me from spending too much money on HPT's any month I'm a day or 2 late.

 

[Amy the Addicted Nurse]

Aw mama, NEVER feel like your son hates you. I guarantee you are the most important person in his little life. It's just hard for little ones to understand that sometimes grown-ups don't feel well.

awww thanks! that's awful sweet of you to say and with one of his favorite characters as your avatar too...I'll have to show him tomorrow! eh, most days he does hate me, it's either the pain, lack of money or time for (home)school and he hates all of them so therefore he must hate me...at least that how it feels so much of the time. This is not how I expected my mothering career to be I sometimes keep him a journal and this reminds me I should do one now so that maybe one day he'll understand it was not b/c I didn't want to do all the wonderful things he wants to do, but momma just can not jump on the trampoline without a trip to the ER and possible surgery at the most and the least is a week of pain trying to get over said trampoline jumping.

 

[Empress Kitty]

girl don't you know it! I'm on Fentanyl 75's and oxycodone's too! OMG withdrawing is the worst! and I start if I'm just a few hours off changing my patch. I don't and haven't ever gotten "high" on my meds...and sadly I don't get much pain relief anymore either. It seems like I build up a tolerance for things really fast...I'm wondering if that's got anything to do with why I got good TH's with the 24mg juice and after a week I get nothing. IDK?

SC just started this big crack down on prescription drugs which makes me madder than heck! It's why even though my pain issues are real my doc has been afraid to increase my meds despite the lack of relief I'm get...at this point I feel like I'm mostly taking it so I won't start withdrawing. And w/ding from Fentanyl is one thing you do not wish for at all!

I just got a new doc and omg I love him! He is doing all he can to help me. He has me on a 2 day patch rotation now instead of 3 (I was withdrawing every 3 days on the 72 hour cycle, they wore off for me after 48 hours and that was I have been told fentanyl is WORSE than heroine for WD I take 4 10/325s a day on average (sometimes more sometimes less but I have to make sure I keep it in balance as I am scripted for 4/day)
He is working with my insurance to try to get funding for me to go to MAYO and be more of a human guinea pig :sigh:

I hate being in pain it is torture! I can't even have intimate relations anymore because of the Allodynia (hypersensitivity to touch for those that do not know the term, being touched in my affected area feels like I am being sliced with razors, clothing rubbing my skin, heck even a breeze can hurt me also cold sensitivity to the extreme: I couldn't swim in my parents pool it was too cold and hurt. It was 86 F I can't be more than 6-8 F below body temp) plus the constant burning pain OMG! Like being doused in NAPALM and set ablaze! Even on all these painkillers its never below a 6/10 and thats a good day! It gets waaay higher on a regular basis. My affected area is my left side from toes all the way up to my shoulderblade but there are three main "epicenters" that are the L knee (where i had the surgery for chondromalasia which triggered the RSD and needed the surgery after a car accident where I wasn't even driving!!!) my hip and a few inches below my L scapula. but pain is still present in the rest of the affected area (just now as severe) OH and I already have the deforming of my hip joint and my knee and tibia and fibula are both bowing on the left side (yay for RSD causing rapid osteodegeneration. BTW did I mention I am not even 25 yet? I'll be 25 on December 19 2011 and the RSD happened right after my surgery Aug 25 2005 so I have had this disease for almost 6 years and had pain for a few years before that though if I could go back I WOULDN'T have had the surgery that ruined my life... I am well on my way to a wheelchair and already need a cane to walk I also don't sleep much. The pain keeps me awake and if I move in my sleep I wake from the pain. Loss of sleep causes cognitive (thought speech and memory problems) in a lot of RSD patients(Me included). I have trouble remembering things, I repeat myself like a 90 year old Alzheimer's/Dementia patient, and I sometimes take 5-10 minutes to find the word I am looking for in a conversation. Even simple words I have used a million times before. I also recently found out that RSD is the most painful thing you can have (it tops the McGill pain scale at a whopping 42!!


BTW Sorry for the novel here, but I want to get my story out and talking with others who know PAIN (not pansy little crap but REAL pain. If any want to know more, I included a few links, or ask me. This is rough on sufferers and their friends and families alike.

IMHO living with chronic pain is worse than a terminal illness, at least if you are terminal the pain doesn't last forever... again just IMO your view may differ.

Love and Peace
~Kitty


What is RSD?

American RSDHope

www.rsds.org/

 

[Sugar_and_Spice]

Kitty,
I can't imagine how awful this must be for you....at least for me, with ra, mine is now minimal to yours, but loads of sleepness night, with left hip hurting no matter what you do or position you are in, walking,standing, sitting, laying down,,,,just can't get away from it. I do have a question tho.
I thought rsd affected nerves and muscles due to atrophy, I
was'nt aware that skelton strucure deterioration was also involved.
I gotta tell you that the Mayo clinic is top notch...Unfortunely, tho, my nephew died there....but due to his illness, not being a guinea pig. They have the absolute latest in technology and the staff are so kind and caring. Go ya in my prayers, girl...
Good luck and keep us posted.
sas

 

[ditch.the.pack]

What noone seems to realize is that if you are truly in pain, you will NEVER get a "high" off your meds, or even create an addiction to them. My mom lives in chronic pain (RSD), so I've learned a lot about it. For those who are in pain, the drugs should be made readily available. It's the idiots out there who abuse it that screw it up for those who truly need them.

I couldn't imagine living in chronic pain with my 4 year old every day. Half the time I'm terse with her anyway, just because she has a great tendency of pushing buttons and getting me to my frustration point. I give you moms who deal with chronic pain and fatigue all the credit in the world - motherhood is hard enough just by itself! Bless you!!

Maybe you could think of low key things that would fulfill the kiddos desire to do things with you? Would reading stories on the couch be uncomfortable? I know pain can be from so many different things, so not sure if that would be a painful position to stay in for any length of time. :-/ You could blow bubbles on the couch or from a chair, too, but once again, not sure on comfort levels. (a little soap on the carpet never hurt anyone!)

No matter what you do, say you love them, and they'll always know it. They'll know their life is different from their friends, but that's not always a bad thing! There are children out there who are being beaten, who are being starved, who have no toys, or who have no parents. You are an amazing mom because you love your child(ren) and are there for them!