Hi I'm New

[Mollyrae]

Hello Everyone, I am new to this site and have been reading posts for a while to see what it is about. I am finding people like myself here who are in need of support like myself. My name is Mollyrae, I am 47 yrs old. I am married, have 2 children and 2 grandchildren. I have been battling chronic pain for many years. I have had 5 back surgeries, 2 of them Fusions and am looking at future surgeries with the Stenosis/balled up muscle masses and scar tissue in both cervical and lumbar regions. I als aquired Hep C sometime back in the 80's ( hemorraged twice, once from auto accident, the other from giving birth to first son). In 2004 I was treated for the hep c with chemotherapy with no luck then in 2006 was treated again with a new and higher dose which made me so ill it almost killed me. My immune system was so wiped out that I ended up with MRSA which landed me in the Hospital having surgery to cut out the infection. I have been on pain meds for years for the dibilitating muscle and joint pain I have from my body trying to fight the infection. I have been prescrbed many different pain meds trying to find the right stuff for me. I was never able to find much in the way of relief, especially in the am's. Just recently my Doc put me on Fentanyl 75mcg's every 2 days and Oxycodone, 25 mg per day. The combo seems to be working better than anything I have tried. The only thing is that I am very worried about the withdrawl if and when I stop. I have been taking it for 3 months and can tell the difference in my personality and emotions. I don't like it. I am becoming forgetful too. I don't want to become a zombie but this is the only thing that i have foung that works for me. Anyone else have these sides? My Husband is not very supportive. He seems to think I could take an asprin and feel great. He does not understand the pain because he has none. I don't know how to make him understand. Anyway, thank's for listening. Sincerely, Mollyrae

[Mollyrae]

The Dr that was going to send me to the Meth clinic was my old one. My new one (not really new) and I have to discuss it. He might just prescribe it. He is not only my PCP but manages all my pain meds which I feel blessed after following others on the site who have to see 2 different Docs. Especially Babym29. I feel bad for her. Thank's, Mollyrae

[Toomanyadvil]

Hi Mollyrea

    I would be frustrated too by going everyday until they allow you to come once a week. But even once a week seems like alot.  
There are some PM DR's that prescribe methadone for their patients. Have you ask your PM about methadone?
Is your DR the one that told you you would have to go to the methadone clinic?


TMA

[Mollyrae]

Sorry for the mean comment about junkies, I shouldn't have said thet

[Mollyrae]

I am tempted to try the Methadone, the only thing is that I would have to go to the Methadone clinic everyday for 3 months until  the dosage is determined and they figured out that I am not an abuser. Then they give you a weeks supply at a time. I have a hard enough time just getting out of bed in the morning let alone having to get to a Methadone clinic everyday and really having to sit with the junkies trying to get clean. God forbid. Mollyrae

[Toomanyadvil]

You can say that again, I feel as if I've aged 20 years since my CP has started. It takes so much out of me physically and mentally.
The only medication I know of that is good for pain but doesnt have all the other side effects is Suboxone and methadone. There both still opioids but some DR's really like to use them for CP because they have less side effects and the dose doesnt need to be raised as often because it takes a long time to build a tolerance.
I always like to hope someone is working on a new medication right now that is as strong as a narcotic pain med but is non-narcotic!

TMA

[Mollyrae]

Thank's for the help. I will keep it in mind if that time comes. My ideal world would be  some kind of medication that would work as good as an opiate without the opiate effect. I am constantly so tired from the effects of the Fentanyl. I also think I have aged a great deal from it. Take care, Mollyrae

[CURLSNJ]

There is a drug you can take that safely takes you through the withdrawl period from opiates and then you cease taking it.. Its called suboxone. It is a miracle drug for people who are addicted to opiates and it is also wonderful for those who no longer want to be on opiates for their pain.  The drug does not take the place of opiates it only gets you thru the withdrawl period . Addicts take it longer because   you also can not get high from opiates while taking this drug.  

[Toomanyadvil]

Thank you Mollyrae, that really means alot.
I hope being here helps you as much as it has helped me!

TMA

[Mollyrae]

Thank's, I have read many of your posts. You are so compationate. I am also glad that you are on the lookout for the drug abusers that come to this site looking for info to a particular drug for the high effect. Thank's........Mollyrae

[Toomanyadvil]

Hi Mollyrae

  Welocme to the community!

I read posts for a while too before I decided to post.
I can understand how you feel about the medication. Alot of us hate the fact that the medication makes us groggy sometimes and that we will eventaully have to go through withdrawls.
But it's helping you function and have as fufilling a life as possible. We deserve that. Try not to think about having to go through withdrawls in the future. Your DR will ween you off very slowly so they wont make you sick.
It's so easy for our family and friends to not understand what Chronic Pain feels like and why we need the medications we do. At first my parents were very uncomfortable with my medication and a "friend" of mine told me I was an addict.
But you need to remind them that without the medication you wouldnt be able to function and spend the time with them you are now if you didnt have the medication.
Without it we would most likely be sitting in bed all day not able to take care of ourselves or our family. We would miss so much out of life.
Our pain is invisable so it's even harder for others to understand. If our outer apperance doesnt say were sick than how can we be?
If people could understand the pain they would understand the medication.
Afterall, no one questions someone taking them for a malignancy.
I have explained it to my family as a migrain. Most everyone understands a really bad headache or migrain that wont go away with any over the counter medications.
I ask them to imagine having a migrain that never goes away. You go to sleep with it and wake up with it. Every minute of the day you feel it. Ask them what they would do.
How desperate would they be to get rid of it? How long could they stand it if they couldnt go to work or consentarate on anything.
Chronic pain is like a migrain in the body that never goes away.

I'm glad you have found a good med cocktail that works for the pain and allows you to function better.
Just keep taliking to your husband. Keep explaining until he can understand enough to accept your taking the medications you do. He may never understand fully as we do, but he may eventaully understand why you need the medications.

TMA

[Mollyrae]

I have tried to educate him and the thing is he has seen so much of the pain. I'm sure he thinks I abuse them but will not come right out and say so. My problem is that back in 2005 I had asked my primary Doc at the time to take me off the Oxycontin & Oxycodone (meds at the time) to see if I could do without. I told her that I didn't think I could do it on my own since I had been on them for the better part of 2 years. She had suggested Methadone. I told her that I did not want to substitute one drug for another and I needed to come off it all. She then suggested inpatient for a week. I decided to do that and what a mistake. They treated me like an addict. Only after 3-4 days was it determined that I was not an addict. After a few months and realizing that I could not withstand the pain I asked her for the oxycodone. She refused. I couldn't believe it. I found another Doc who understood my pain and believe it or not, they work for the same clinic. This is why my husband thinks I don't need the opiates and could do without. I am now concerned about stoping the Fentanyl if I needed to, there are so many drugs that are not compatible with Fentanyl and down the road it is possible I will have to stop for other med issues. I heard the withdrawls are some of the worst for opiates. Anyway, thank's for responding to my post. Mollyrae

[sandee1818]

I can relate. My husband and son who are always beside me when I need them does not understand. Just last night my son and I were discussing the fact that one of my Dr's is leaving for Spain and Kevin my son said well this is a good time to stop taking all them meds. I only take what I have to and sure I am addicted because I have been on them so long it would be torture to stop taking them. When I say addicted I mean in the sense that my disease requires them. They don't understand that the aspirin or the tylenol is not going to help us. My husband is the same way. They are very supportive but think I should give up all the meds. So I know where your coming from. Is their reaction a product of the stigma attached to the meds? I believe it plays a huge part.I think your husband is relying on the information he gets from the news etc. about these meds. You should educate him on the meds you take and why you take them as he probably is relating your meds to the stigma and the fact that  so many abuse them, this is another side effect that the  abusers have on the legitimate Pt's.
I am so sorry you are in such pain, I do not use the patch but with my meds I am always hot and yes forgetful too. There are so many side affects to these meds but we learn to live with them because the side effects are better to have to deal with than the pain we would endure without them. I hope things get better and just know we are all here for you.