i have to ask....methadone

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alicat72
Regular Member


Date Joined Jun 2008
Total Posts : 79
   Posted 8/14/2008 9:58 PM (GMT -7)   
i am researching different meds for fibro because i have an appt on the 28th and my meds have basically stopped working (after only 6 months. geez.)

anyways. i remembered today that i meet this woman once who told me she had been on methadone for her fibro. she had taken it for years and had never had to increase the dose.

i always thought that methadone for for opiate withdrawal so i was surprised at this. she said it worked great for her. so, today i researched it....seems a lot of people use it for pain relief. what i want to know is if any of you have had experience with it and what that experience was (good or bad).....

thanks in advance....

A

Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 8/15/2008 12:20 AM (GMT -7)   
shocked  This doesnt anwer your question im afraid.  But I am on an opioid drug and are concerned at how long it will work for me for also no one else seems to be on them but the pain releive was non existant through the doc.  I was told an opioid could last for years and years but I am starting to have a hard time after one year and am hoping its not the drug.  I was just wondering what drug you are on.  I feel alone being on what Im on and wondered if there are others on the stronger meds. shakehead shakehead shakehead    suez2
Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40592
   Posted 8/15/2008 5:58 AM (GMT -7)   
Methadone has been around for years and is used to help with heroin addiction. There is only one thing about it and the doctors wont tell you, but long term use can be hard on your bones. I hope that you don't have that problem. Also you can get what is caused meth mouth. Where your teeth start to fall out. So if I were you, I would not stay on this drug for a long period of time. Ask the doctor what you can take in place of it.

Good luck, and keep us posted.

hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 8/15/2008 7:11 AM (GMT -7)   
ali,
 
You have come to the "all-knowing expert" of methadone. :-)   LOL-OK, I may not be an expert, but I think I know what I'm talking about.  First of all, methadone is used for both pain management and for opiate withdrawal (not just heroin).  In fact, a lot of people on methadone are taking it because of an addiction to pain meds.
 
How do I know this?  Because I am a recovering addict, and I am on methadone maintenance right now.  I have been on the same dose for a long time, but I get absolutely no pain relief from it.  People (doctors) don't seem to understand that when a patient is on methadone maintenance, they are on it simply to counteract the euphoria (or high) of any opiate you may take, and take away the cravings for whatever drug you are trying to get off.  Honestly, I do not know about taking methadone for pain management.  I'm just giving you an "addict's veiwpoint." rolleyes
 
Also, I'm sorry Karen (getting by).  I love you and we always seem to agree on most things, but I'm gonna have to disagree with you on something.  It is a rumor that methadone gets "into your bones" and causes your teeth to fall out.  Most addicts have dental issues because of the lifestyle they are living while on drugs.  If you are looking to score, you're not thinking about anything else.  BTW-I learned this from my methadone doctor-who is probably the only doctor that I trust 100%.  He has been dealing with methadone for over 40 years.  BTW-no hard feelings, OK, Karen? blush
 
Anyway, I would definitely talk to you doctor about this.  I doubt your doc will pick methadone as a first choice for pain control before trying other things, first.  Also, I could talk a lot more about this (LOL-I could talk a lot more about anything tongue ), so if you want, feel free to email me, OK?
 
Take care and good luck! :-)

FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
 
"I'll take the Chivas instead"
-Kelly Clarkson


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40592
   Posted 8/15/2008 8:45 AM (GMT -7)   
Hi Kelly,

I do know a person who has been taking methadone for years and she is dealing with issues with her bones breaking and meth mouth. Her teeth have been breaking off at the jawbone. She took methadone for pain management for years. I also know that many people with heroin addiction have had bone cancer from methadone. So it isn't the all around good medication that the doctors would like you to believe that it is.

I am happy that the methadone is working for you Kelly, but try not to stay on it for too long of a time. My husband took methadone for pain management also. He has severe back problems. Finally he got off of them and went to oxycodone.

Thirtyfive years ago they prescribed methadone for heroin addicts. Then they discovered long time use is damaging to the bones. At that time it was the lesser of two evils between that and heroin. Now they just don't talk about it. I know that you do a lot of research Kelly so I think that eventually you will find that it isn't a very good drug to take, I hope that you can get off of it soon.

Respectfully yours,
Best wishes,

Luv and hugs, Karen...
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


alicat72
Regular Member


Date Joined Jun 2008
Total Posts : 79
   Posted 8/15/2008 9:20 AM (GMT -7)   
thanks for all the info ladies....

i doubt i will be asking my doctor about it tho.

i am currently on tramadol 100mgs/ 3 or 4 times a day. it worked for a few months but the pain is creeping back in.....i also take gabapentin 600mgs/day as well as zanaflex 4mgs at night.

one thing i have noticed is that the pain gets a lot worse a week before my period. i'm sure it hormonal, but i have no idea exactly what causes this.....any ideas?

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40592
   Posted 8/15/2008 10:08 AM (GMT -7)   
I think that the pms causes us to be tense, which in turn causes us to hurt. It is like a viscious cycle. I think that watching your diet during this time is crucial. Avoid carbohydrates and caffiene. I know easier said than done.

I hope that you have a wonderful day

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 8/15/2008 11:37 AM (GMT -7)   
Kelly, this is a study from the National Institute of Health that shows low bone density in methadone maintenance patients.  It also states that "efforts to increase awareness of low BMD in MMT patients should be considered so that effective treatment may be employed to lower future fracture risk."  So,  you need to be armed with this information. 
 
 
I have osteoporosis.  I don't want to start having my bones start to break and am on medication for it.  I hope you get a bone scan and talk to your doctor about this.  Print out this information from the National Institute of Health. 
 
By the way, calcium is stored in both your bones and your teeth.  If the calcium is being leeched from your bones, it also can leech from your teeth.  That could be why Karen's friend had her teeth breaking off, too.
 
Sherrine 


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 8/15/2008 3:04:13 PM (GMT-6)


MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 955
   Posted 8/15/2008 11:51 AM (GMT -7)   

Another reason for tooth loss is certain medications cause dry mouth, which in turn can cause tooth decay. I lost four teeth due to Elavil, which cause me severe dry mouth.

I am currently on Vicoprofen, the generic for it and have been taking it for about ten years, the SAME DOSE. It helps me to manage my pain, doesn't take it all away, but makes it manageable.

be well,

Miriam

 


QTKaren
Veteran Member


Date Joined Apr 2008
Total Posts : 605
   Posted 8/15/2008 2:43 PM (GMT -7)   
I have been on vicodin,morphine and a muscle relaxer for the last 5 years for pain relief.  Origionaly the narcotic drugs were given for severe bladder and urethra pain due to a botched bladder lift where nerves were severed.  It also was a bonus for me because I had delt with chronic back and tailbone pain for years.  I was supposed to have the 15mg morphine upped until I was comfortable and then the vicodin as a breakthrough pain med.  But,the doctor at the pain clinic did a complete turn around on me and dropped me as a patient saying I lived too far away for treatment.  At any rate I was stuck at this same doseage because my reg MD couldnt raise the morphine without me going through a pain doctor.  All he can do is write for what was set up already.
 
Normally I would have had my meds lose their effectiveness over time but I have learned to take "drug holidays".  This means every month or so taking a week and delibrately lowering my reg doses of meds on my own.  I do have to deal withextra pain that week but when its over my body seems to re-set itself and going back to me reg doses works well again.  Also just because you are on pain meds doesnt give ya a free ticket to do things that would normaly cause you pain without the drugs cause your body is going to go into pain overload later.  The same goes for if your on Lyrica or something like that.  As far as methadone is concerned I dont take it but one of my husbands work crew does and it is getting to be a problem for her.  She is not getting good pain relief from it anymore and is not buying extra meds off the street cause her doctor wont raise her meds anymore.  Not a good cycle to get into not to mention she could lose all her access to furture meds should she get caught.  But the main thing is that this med doesnt offer good pain control after awhile.
 
I know that some addicts also have problems with tooth decay from thier herion days and cravings of candy same for methanfedimine(sp) users.  They seem to have unusual cravings for sugar and that along with a bad lifestyle adds to the tooth decay and I can imagine with other bone loss how terrible that could be.  I have to give a ^5 and some serious
credit though to you Kelly.  Great job in your sobriety.  I know that must have been a hard time in your life and I am proud of you for sticking it out.  Way to go girlfriend!!!
 
Soft Hug's,
Karen
Karen
 
Mom of one gramma to 4
 
Fibromyalgia,IBS,Stroke x2,endometriosis,Diabetes type 2,neuropathic pain,nerve damage due to tailbone removel,nerve damage due to fractured back,deppresion,high blood pressure,severe nausea,atrophy,chronic pain


QTKaren
Veteran Member


Date Joined Apr 2008
Total Posts : 605
   Posted 8/15/2008 2:47 PM (GMT -7)   
Opps I meant and NOW is buying extra meds off the street
Karen
 
Mom of one gramma to 4
 
Fibromyalgia,IBS,Stroke x2,endometriosis,Diabetes type 2,neuropathic pain,nerve damage due to tailbone removel,nerve damage due to fractured back,deppresion,high blood pressure,severe nausea,atrophy,chronic pain


alicat72
Regular Member


Date Joined Jun 2008
Total Posts : 79
   Posted 8/15/2008 10:27 PM (GMT -7)   
hey karen- thanks for the response to the pms situation.

i definately a lot more tense in the shoulders/neck as well as the lower half of me (hips/legs).....what bothers me most though is the joint pain. my feet, ankles, knees, elbows, and even spine hurt so much more before my cycle.

i have done google searches and haven't found much. all i found was that hormones may play a part in fibro.

i suppose i should just try and find some relief though my doctors advice and prescriptions.....

breathofsighs1
Regular Member


Date Joined Aug 2008
Total Posts : 74
   Posted 8/16/2008 10:52 AM (GMT -7)   
rolleyes   Hello everyone,
As  you can see I am very new to this. Please forgive me ahead of time if I step out of line or insult or hurt anyones feelings as it is not my intention to do so. I hope to learn alot from these baords. Besides that, due to my illness I have no tact. Please forgive me.
First of all Being a medication specialist for  sveral years when I was able to work as a nurse, Iam sure I
have forgotten alot already. I am currently on methadone for pain.
 Methadone was invented by the Germans during WW2 because they were running out of morphine for pain for their soliders. Methadone is a synthetic form of Morphine. It does not come from the poppy plant like Heroin. METHADONE WAS NEVER INVENTED FOR OPIATE WITHRAWALS. Itwas invented for pain relief.
It does not cause BONE CANCER. It might cause bone pain in some patients, and with any drug, not everyone can take methadone. The term "METH MOUTH' does not come from Methadone. "Meth mouth" comes from the illegal use of the horribly addicting drug "METHAMPHETAMINE" And it is an insult to me to even be associated in anyway with that horrible, horrible drug by saying methadone causes "METH MOUTH"
Methadone may cause problems with tooth decay but please do not call it "METH MOUTH"
Methadone is a god send for alot of people who  have severe chronic pain. The stigma is bad enough as almost everyone associates the use of methadone with being an addict. Addicts are the most misunderstood part of our  society and my heart goes out to them. It isnt like they just wake up one day and think to themselves "Gee,I want to completely ruin my life, sell my soul and hurt everyone I love, including  myself" addicts need love and undertsnading too.
 It doesnt need to be said it causes BONE CANCER and 'METH  MOUTH" 
 Some patients and addicts might be turned away from even trying this drug. One thing that is true and probably the worst of all about methadone is that trying to kick methadone is harder than trying to kick heroin due to it's longer half life. (It stays in your system longer)... Thats why you do not get that euphoric high from it like heroin or morphine.
Again, no hard feelings, I hope. Please help  me to adjust to the workings of this board and how I might become a valued member and hopefully to be able to add useful and helpful communications....Please take care everyone.
best wishes,
Breath blush

breathofsighs1
Regular Member


Date Joined Aug 2008
Total Posts : 74
   Posted 8/16/2008 11:07 AM (GMT -7)   
Oh Gosh, are we supposed to add what our diagnosis are and what other meds we take ? YIKES!!! That could take awhile, lol.
I have been diagnosed and treated for
graves disease
radiation for graves
hpothyroidism
2 heart attacks from throid med
adrenal problems
non malignant tumor on left kidney
central and obstructive sleep apnea
head injury from car accident in 1984
fusion on my cervical spine c5-c6
2 bulging discs above the fusion

omg I think I am sick! lol anyway i do have a few other problems but you know what? I get tired of even tALKing about any of them anymore.
and I take meds for bp, thyroid, pain, rest, etc.....

breathofsighs1
Regular Member


Date Joined Aug 2008
Total Posts : 74
   Posted 8/16/2008 11:11 AM (GMT -7)   
rolleyes   sorry  for the double posts.Dang it.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 8/16/2008 12:23 PM (GMT -7)   
Hi, Breathofsighs, and welcome to the fibromyalgia forum!  I'm glad you joined us.
 
You are absolutely correct about Methadone.  It is used for pain relief and is being used with cancer patients.  It can be addicting but we have had many discussions on this forum about addiction vs. dependency.  Most people in pain aren't addicts but they do become dependent on certain medications to help ease their pain and provide some quality of life. 
 
Methadone, though, can cause bone loss.  I have osteoporosis and before I was diagnosed I noticed my teeth were looking a little "transparent" and not white like they usually were.  I just chalked it up to age.  Then I was diagnosed with osteoporosis and am taking more calcium plus medication for it and now my teeth are white again!  Ninety-nine percent of calcium is stored in the bones and teeth.  So, if methadone can cause bone loss, it seems to me that it can affect the tooth structure, too.  So, perhaps Methadone can cause tooth breakage.
 
There definitely is a difference between Methadone and Methamphetimine but both can be called "meth" and I think therein lies the confusion.  We are not doctors so members can misunderstand.  I thank you for explaining this more thoroughly.  I'm sure this information has helped some people.
 
By the way, you don't have to list illnesses or meds.  Some do in their signature because it sometimes helps other members understand what they are going through. 
 
I did delete the extra post for you.  That happens sometimes.  I think it's a glitch in the site so don't be concerned!  I am glad to meet you and I hope to hear more from you soon.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


breathofsighs1
Regular Member


Date Joined Aug 2008
Total Posts : 74
   Posted 8/16/2008 6:51 PM (GMT -7)   
:-)   Hi Sherrine,
Thank you for you kind welcome and info about methadone that you have experiened. Dealing with severe pain every day does tend to make one kind of "touchy' at times...lol...I know that I am dependent on methadone and i despise having to take anything for pain.  I want to taper SLOWLY off this med and I know it is so hard to do.
I have read in some reports that it can and does cause bone problems for some. Sorry to hear about your probs with it. I am going to try some calcium too. I drink lots of milk, but because of my illnesses and the meds I am on I CANNOT tolerate sunshine at all. ( sunshine can and does increase your ability to absorb calcium thru the vitamin D you get from sunshine)So OTC calcium might just be the ticket.
Methadone has really saved my life from all the pain I am in but I have been on it for almost 5 years now. For people that can take it, it can be a great pain reliever.
Thanks again.
Please take care,
Breath
 

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/16/2008 7:11 PM (GMT -7)   
My daughter uses Methadone with Vicoden 10 for breakthrough pain. To me that seems like alot of medication. You see I suffer with Fibro too, as well as osteoarthritis and Crohns Disease (33 years with that). I have pain everyday also, but I am able to control it with Percoset. I only take 1/2 tab 3 times a day and that controls me pretty well. Like someone else above said, I am not totally pain free, but it at least gives me some relief.

I am concerned that my daughter is on this strong of medications. I don't question her having Fibro and having pain, but needing that strong of medication? She has no other health issues except for the Fibro. I see other people on this board with alot more stuff going on along with their Fibro and taking less potent medications. She even refuses to see a pain mgmt doc (I think becuz she has a doc who will give her whatever she wants). Don't get me wrong, I too suffer with Fibro, so I am not saying it doesn't exist, because I know it does, but is that strong of medication needed? Just curious about your thoughts.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/16/2008 7:12 PM (GMT -7)   
Oops sorry for the double post!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 8/16/2008 7:28 PM (GMT -7)   

Breath, I'm not on Methadone.  I have been able to control the pain with ibuprofen, Tylenol, and malic acid/magnesium supplements.  There are some members on here that are taking the high potent pain killers, though.  Everyone is so different with fibro and with how they tolerate pain.  For me a positive attitude really helps me tolerate the flares.  I know I will be better...I'm just not sure when.  I also don't keep taking various medications to try to be pain-free.  I don't want the side affects, the dizziness, etc.  I'm happy to be able to control the pain and be able to live my life the way I want to.  I don't let fibromyalgia dictate what I will and won't do.  I just find ways around it.  I like to look at all my blessings and focus on things other than how I feel and that helps the pain fade in the background.

We definitely do not judge people by what medications they are taking.  We know the problems of fibro and how each handles it is between them and their doctors.  My doctor wants me to try some different medications but it is my choice not to.  I'm stubborn and would rather deal with the pain.  But that's just me.  I totally understand when other can't do that.  Some have more pain than others with fibro and some have higher tolerances to pain, too.  We all understand that, unfortunately.  cry   I'm glad that you have gotten relief with the Methadone and I do hope you can wean yourself off it eventually.  Maybe we can help with ideas that have worked for us in easing our pain.  That's what is wonderful about this forum.  We all really care about one another and want to help in any way we can!

I did start taking malic acid/magnesium supplements last December and they have really helped me with pain and fatigue.  Others on here have tried it and most of them have been helped too.  It is inexpensive and it may be worth a shot to try it.  I will bump up the thread about it.  Read the thread and see what you think.

If you take calcium I would suggest that you take Citracal with D.  Citracal is calcium citrate and it is the most easily absorbed by the body.  I took Caltrate (calcium carbonate) for 20 years and still ended up with osteoporosis!  I wasn't absorbing the calcium!  I learned the hard way so I'm passing on this information to anyone that will listen to me.

I hope you start feeling better.  Have a nice evening!

Sherrine   


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 8/17/2008 3:32 PM (GMT -7)   
breath,
 
First of all, welcome to fibroland.  You'll find great info here, but you'll also find some of the warmest, most caring people you'll never meet. wink LOL  Anyway, I think you are my new hero.  I posted my point of view of methadone earlier-and I admit, that I was slightly insulted by some of the responses I got.  First of all, I was probably just extra sensitive, so I hope everyone knows that I hold no hard feelings against anyone.  I really do love y'all.  We ALL have our own opinions and beliefs, and in the short time I've been here, there has never been a "fight" like I have found on a few other fibro sites.
 
But, it's so hard (for me) when I have had almost 12 years sobriety-and believe me, I've worked hard on that, and you hear things that are just a little soul crushing. cry   Again, I know I was being defensive, and I apologize, but I firmly believe that unless you've experienced something, you really don't know what people go through.  It's kind of like the people who think that fibro patients are just tired alll the time and need to get over it.  Basically, it falls into that old saying-"Try and walk a day in my shoes..."
 
So, my point is thank you for further explaining what methadone is and isn't.  I guess I just could have said that, but as you'll learn, I'm a babbler. :-)
 
QTK,
 
Thanks so much for the High 5 (slaps your hand).  I can't believe it's almost been 12 years-but if I hadn't gone to rehab when I did, I would be dead-and then who would be the site's most famous yakker?  tongue LOL  Seriously, thank you for realizing how hard sobriety can be-especially because I was addicted to pain pills and now I need to take them to just manage.  FYI-that is why I CHOSE to go on methadone-so I would not get addicted to the pain pills again.  I have no doubt in my mind that if I didn't go on methadone, I would be addicted to them again.
 
Also, I know we say this all the time, but everyone's pain is different, and everyone handles pain differently.  One of the first things someone (I forget who) told me when I came here was not to dismiss what I feel.  My pain is my own-and only I know how I feel.
 
Anyway, I'm really sorry if I've offended anyone.  I just had to say something (LOL-like that's a shock, huh?).  All families disagree once in awhile, right?  In my opinion, the positive thing to do is talk about how you feel.  I hope that's OK. blush
FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
 
"I'll take the Chivas instead"
-Kelly Clarkson


breathofsighs1
Regular Member


Date Joined Aug 2008
Total Posts : 74
   Posted 8/18/2008 8:57 AM (GMT -7)   
smilewinkgrin   Hi Kelly71!
LOL  I aint no hero. (you made me laugh and I appreciate that) I think anyone that lives with pain day in and day out cannot ALWAYS be a little Miss Suzy Sunshine! lol  Congrats on your 12 years and I know it is a day to day battle still. Of course we all get defensive,(I think,LOL) but we all also understand that each of us are dealing with indescrible pain on a day to day basis and each of us deal in different ways but at least we BELIEVE AND UNDERSTAND each others pain.(Just having someone say to me "I understand and believe you" makes me want to cry with relief) There were times a few years back that I actually thought I was truly INSANE because NO ONE BELIEVED  me and the pain and exhuation i was going thru.) I finally moved back home and went to see my reg Docotor that I had worked with and also been a patient of his for almost 25 years. At the very first appointment after not seeing him for several years, HE BELIEVED ME!  He has saved my life many times over now. Seriously actually saved me.
 Just because non affected people cannot see our pain, they just dont realize the exhaustion, pain, depression etc...that we live with as soon as we wake up (if we were able to sleep the night before) each morning. My sister in law has Lupus and her and I both know how hard it is to deal with family, friends, even some of our health care team. I have labeled our diseases as (The Invisible Blood) due to the fact that IF we had a broken bone or blood dripping out of a laceration then people would be able to ACTUALLY SEE the illness then maybe they would know and accept and be more understanding to us. But they cant see it. Sometimes I think we all need to try to understand them more, (although I must admit sometimes I would rather just put a boot somewhere when someone says to me"Oh just come with us you dont look THAT bad!"  mad   grrrrrrr.  lol. Thats why these boards are so important to people like us. I have researched alot of boards and this is the first one I have attempted to join, due to reading all the kind and supportive posts on here for some time now.
Please take care and also, thank you so much your kind welcome also! :-)
Breath
(sorry for the long post but I am so excited about this group that I wanted to give some history.)

d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 8/18/2008 11:18 AM (GMT -7)   
Hey Nanners! I'm an FMS, Crohnie too! I take Fentanyl & Oxycodone w/ Baclofen & Lidocaine Patches BTW.
150mg Azathioprine
Lomotil
Iron
Nexium 2/day
Fentanyl patch
Oxycodone
Baclofin
 
Crohn's, Fibromyalgia, Several bad discs, bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Stricture
2 resections
 
Stephanie
 
When I am weak, then am I strong


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/18/2008 12:53 PM (GMT -7)   
d2parrotperson, you are a great example of someone who really needs strong medicine. I have/had many of the same things you have. My bad discs have been successfully surgically repaired, thank goodness! Now that is horrible pain, and nothing works.

I do not discount my daughters pain. I guess I question, in her case, the need for that strong of medication. She doesn't have days where she is bedridden and has to stay at home like some of us do. She is out and about working, taking care of her kids etc, and was the same when she was just on Ultram. Hence, my questionning the use of Methadone in her case. I do not doubt there are folks with Fibro who have had to use stronger medications, but the most I have seen are like yourself, with multiple issues going on.

And on the subject of tooth breaking etc., in the year my daughter has been on Methadone she has had two teeth break on her exposing the nerves and spent close to $3000 trying to get them fixed. I never realized the two are connected and will bring that to her attention. At least I can get her to take some xtra calcium to help out.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

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