Turning to Patches after yrs with FBS

[joannern]

I have had FBS since my late 20's and suffered every month for over 10 long years with no pain management.
Thankfully it went dormate for over 20 yrs and then I had a bad fall in 2008.  Ever since then, I have daily 24/7 severe
pain and almost all of the other problems associated with FBS ie: Hypotyroidism, OsteoArthiritis, severe Depression,Gastritis/IBS/GERD, and etc.  Finally a little over 1 yr ago after taking Percocet and all the severe stomach problems., they decided to try the Fentenyl Patch.  I was started on 25mg then within a month or so of continued pain , I went up to 50mg,  I still have lots of pain and also on Sevella 100 mg but it is allowing me to get out of bed,

I am on SSDI, and a Retired Registered Nurse since my fall.  Many of my Specialists (GI, Therapists) feel that
I should get off all narcotics.  As much as I hate being on these medications I would truely rather be dead.
I eat healthy, exercise almost daily ht is 5'5' wt (losing since illness) is 107 lbs, Ave wt was 125.
  (some days I am too sick), and feel that I need to take these to be part
of the "human race".  HOW CAN I HELP THEM UNDERSTAND THAT WITHOUT THESE MEDS, I WOULD HAVE NO LIFE.  The speciallist just deal with their one componet of the body & NOT the sum of
all parts ie PAIN PAIN PAIN,

[Tuckamore]

Hello Joan,

Welcome to MedHelp's Pain Management Forum. Please excuse my tardy response. I am so very sorry to hear about your chronic pain. My heart goes out to you.

It is difficult to get some physicians to understand how chronic pain disrupts our daily functioning and inters with our sleep. They just don't get it. Especially when we are part of the medical profession they often think we should just "buck up." But they have no idea until they have walked a mile in our shoes when we endure 24/7.

You don't mention a PMP and it may behove you to consult one. Not all of them are good or understanding but most are and are well trained to understand and treat chronic pain. You may want to request a referral to one. I fought the same fight until I stumbled across a new, kind and understanding PCP when former MD left our clinic. She was appalled at the treatment I had received....which was no treatment for my long time chronic pain. I hope you can locate a physician like mine.

You are too thin for your height and age, but I don't need to tell you that fact. I hope you will work on some weight gain through come supplemental nourishment's. It's always good, in my opinion to have a little weight to fall back on if we get into a serious medical situation. I am sure you know what I am talking about.

I feel the way you do. I certainly don't want to be dependant on opiates to try to function to some degree of normalcy...but I would rather not be on this earth then return to the chronic uncontrolled painful life that I experience before opiate pain therapy.

Have you kept a journal to document your pain and the "things" that it prevents you from doing? How it effects your sleep and ability to function? Sometimes this will give the physicians some insight into our lives.

If you are unable to convince your physicians that you truly require opiates to function or to even have a desire to live....I encourage you to change physicians....keep looking until you can find a kind, caring physician. I don't know your states policies in regards to narcotic or the treatment of chronic pain. In my home state it is the PCP that treats their chronic pain patients. A PMP only offers treatments and medication suggestions. It is our PCP that follows and prescribes for their chronic pain patients.

I sincerely hope you will be active in our community. We may not have all the answers but we are supportive and care. Please keep in touch and let us know how you are doing. I will look forward, with interest to hearing from you again. Best of luck to you.

Take Care,
~Tuck

[namnam46]

I want to join Tuck in welcoming you to the Pain Management Forum.  We're VERY glad that you found this Forum. I want to be sure that you know that there are NO Doctors on this Forum.  We are ALL CP - Chronic Pain - Patients  that help each other through our OWN CP Issues.

I'm VERY sorry that you are having to fight this battle with your Physicians!!  It's just NO RIGHT.  

Would you mind telling us WHICH Doctor gave you your Patches?  I'm on them also and I'm at 100 mcg's right now.  Before my surgery I was at 62 mcg's and then went to 125 mcg's AFTER the surgery and rehab.  I'm starting to come back down to a lower level of Fentanyl right now. Next month I will more than likely lower that amount once more.  I change my patch every 48 hours.

I, too, have been faced with losing weight.  I'm QUITE sure it's because of my patches. I went on the Fentanyl in January and I weighed 175 lbs.  NOW I wieghed this morning and I've lost ANOTHER 2 lbs. this week and I'm NOW down to 131 lbs.  I'm NOT trying to lose weight I just have NO APPETITE at all.  I get in a few bites and I'm FULL!!.  I DON'T want to lose anymore weight than I have and I've GOT to make myself eat more.

Have these Doctors given you a GOOD reason for wanting you off of your Pain Meds?? Are they causing you side effects that are harming you? Is it because of your weight loss?  If NOT then you need to fight for your pain relief.

PLEASE find different Doctors if these keep pushing for you to get off ALL of your pain meds and there are no medical reasons for it.  My ONLY problem with it is losing weight.  I don't have ANY OTHER  side effects from them.

I hope that you will let us know how you are doing.  We will be looking forward to your updates on your battle.  Good Luck........Sherry