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Koren55

New member
Joined
Jun 22, 2017
Messages
7
Reason
DX FIBRO
Diagnosis
08/2001
Country
US
State
Maryland
Hi everyone,

Sorry for the longish post, but sometimes it's needed, right?


I've been taking narcotic pain meds since early 2001. They've been the only thing that controls pain. Over the years I've tried numerous alternatives, but nothing has been effective.

Acupuncture was a joke, I tried years ago, stuck it out for 3 months with absolutely no improvement. I tried again this year, with a practitioner familiar with Fibromyalgia. Two sessions and she recommended I stop. Her treatment was increasing my pain levels, not decreasing them. When she inserted her needles near a tender point, it triggered burning pain. I tried to bear it, but one time she used a needle in my wrist, only stuck it in and then removed it, and zip went the pain. I asked her to remove it not knowing it was already taken out.

Epidural injections? I have Degenerative Disc Disease in my lower spine. When a disc goes out, I see stars until it slips back. One Pain Management Specialist, supposedly a Fibromyalgia Doctor, thought epidural injections would work. They did keep away some disc pain, but had no effect on Fibromyalgia pain. After two years, he realised the injections were only lasting 3 or so weeks, not Months, he referred me to another Doc in his clinic. This one wanted to try Facet Joint injections. But when the main Doctor found out, he said no, said it wouldn't work for me. That was in 2010.

Recently I called his office to schedule an evaluation. I wanted to find out what new Pain treatments were being used. Guess what? They refused to see me! Just said they couldn't help me.

So here I am, wanting to get off of opioid meds, and they, a Smart Pain Management facility, refuses to see me.

The pain meds I'm taking are:
Celebrex 200 mg capsules one in morning, one at night.
Gabapentin (neurontin) 600 mg at night (at higher doses I tend to fall)
Fentanyl patches, the 75 mcg size
Oxycodone tablets, 45 mg in morning, twelve hours later 30 mg (or 45 mg Italian levels high)

I take a lot of other meds too, have a complex medical history.

Back in 2001 I started with size 50 patches, over the next three years went up to 75, then 100. I tried to go off them by going down to 75, the 50, then off, but by then my body was physically addicted. In response to going off it my pain levels skyrocketed. And with no alternative, I had to go back on them. About 12 years ago I settled on 75s. Been on that dose since. But for breakthrough pain, then to keep pain levels down, my doctor began me on Oxycodone, 30 mg tabs. When I began taking two at once for breakthrough, he suggested I take 15 mg tablets, 3 in AM, and 2 in PM. So I was on that dose for years. But as we all know, your body gets used to that dose and I found I was experiencing more breakthroughs. So my current doctor said I could take one extra a day, as needed. I'd say that around 80% of the time I don't take an extra one.

Fortunately my Doctor has been my Primary since 1989. And when my last Pain Specialist left the area, he again took control of my pain management. We have a good trusting relationship. He knows i don't abuse the narcotics, he knows they don't make me high either. And he knows I want to get off them find an alternative.

I'm still searching....

Koren
 

Maria22

Active member
Joined
Jun 8, 2017
Messages
56
Reason
DX FIBRO
Diagnosis
03/2010
Country
Usa
State
Vt
Hi Koren, I know how painful degenerative disc disease is . I also had to cut my work shifts down to 4hrs. Instead of 8 in 2013 because of this . Could nearly hold myself up at work . I'm suprized the epidural do not last longer for pain management. It varies with each person . I have gone twice back since then but stopped when I discovered Cymbalta.
You really need to get off all those pills and try to detox in a hospital environment.
Not sure on your health care status but that really should be your goal.
Maybe try tramadol. Although that's another addicting drug . I'm no Doc , but that would be my personal direction. I took tramadol for 4years and worked well , However I decided enough was enough with that and went without on vacation. I detoxed myself . Was not too good.
I would think about Lyica, Cymbalta, and maybe some healing sessions with a healer. Light therapy. Works so much better then acupuncture or seeing a chiropractor., who usually doesn't really work or hasn't for me.
Actually just hurts too much.
Hope some of this was helpful.
 

Koren55

New member
Joined
Jun 22, 2017
Messages
7
Reason
DX FIBRO
Diagnosis
08/2001
Country
US
State
Maryland
Maria,

I was on Tramadol/Ultram back in the late nineties and in 2000. But then it l o st it's effectiveness. That's when my doc switched me to a Fentanyl patch.

I want something that will replace the fentanyl, but still keep the pain away.

Next week I have appointments with two new Pain specialists, and am planning to see a third. I want one that I'm comfortable talking with, and one that will listen to me.

Currently I'm writing a Pain Patient's Bill of Rights, something I want my Doctor to agree to in principle.


Something asking for Compassion, recognition that I am the patient, and I want input into my own treatment plan as a partner. I know my body, I know whats, been done. And I don't want my concerns brushed away.

I also don't want to be treated like an addict. Too often these doctors take us for granted. They assume the worse. Years ago i had my blood work done and it came up as a positive for Heroin. I had a nurse practitioner, one who didn't know me, yell and scream at me, threatening to take away all meds. She said she just new I was a junkie, shooting up heroin. I told her I never ever touched the stuff. Asked her to examine me for needle marks and demanded to be retested. I never felt so belittled.

I had to demand to see the main doctor, he had been my doc for 8 years. He believed me, ordered a blood draw right then. That one came up negative. It was a false positive, and they do occur. We think this one came up because for a few days prior to first draw, I had been eating these large poppy seed bagels. Ones that were covered in seeds. So now I watch out for them.

Still, I'd like my pain doctor to realise that false positives do occur and if one came up to immediately request a new draw.
 

Maria22

Active member
Joined
Jun 8, 2017
Messages
56
Reason
DX FIBRO
Diagnosis
03/2010
Country
Usa
State
Vt
Hi Koren,
Please realize I'm trying to be helpful here.
I'm sorry that Your having a rough go of it !!
I believe that You have a good Plan!!!
I'm sorry that You have had bad experiences with Healthcare. I Do get it.
I may not have had Your personal experiences, however I too have not a smooth road either with this.
I'm struggling with walking this am. And the fog I have today is making me feel like I'm in concrete trying to break out. This am I woke up and couldn't feel my hands. They felt disattached.
One day, or minute, second at a time for me today. I'm in a new home this morning and it's Sunday. I have thought about finding a Church I could attend. I haven't been to Church in a very long time.
I will say prayers for You.
Keep fighting this . Sincerely
 

Gypsygirl

New member
Joined
Jul 16, 2017
Messages
1
Reason
DX FIBRO
Diagnosis
01/2013
Country
Uni
State
TN
I am new here, but not new to fibro. This week I found something that works great for my fibro. Pain, fatigue, and fog. It is kratom! It's illegal in my state of TN. But is not in KY. Which is literally across the road. I live on state line. But anyway...it works great! I use the green strain of kratom. Do so research on kratom and see If you think it might work for you. Hope this helps.
 

Meridithanne

New member
Joined
Jul 16, 2017
Messages
9
Reason
DX FIBRO
Diagnosis
09/2011
Country
USA
State
Michigan
I am new to this forum! Was diagnosed with fibromyalgia in 2011! Don't wish this horrible illness on anyone!
I have been on countless meds, with very little help! Been through rounds and rounds of physical therapy! Didn't help! I have lost 2 jobs because of this illness! While fighting for disability, I have embarked on a journey that has actually helped me! While sadly, there is no cure for fibromyalgia! I have found plant based products that have given me back a lot of my life! I have so much energy, pain level decreased! 5 months ago I could barley walk up and down the stairs , I avoided them as much as I could, finally broke down and got a cane and Walker! Still need them occasionally, but not as often anymore! I am able to walk up and down stairs well on my very good days!
While I still will have bad days, and not so good days! My days are a lot better all around with these supplements called Plexus!
I am so unbelievably have to have Plexus in my life!

I am in no way trying to sell anyone anything, just stating what works for me!
 

moe1959

Very helpful member
Joined
Sep 13, 2014
Messages
708
Reason
Undiagnosed
Diagnosis
09/2014
Country
US
State
wa.
First you need to ween slowly off narcodics, YES ITS HARD! I still drag my heels in the ground every time I go to my Dr. and He sais no I will not increase your dose. We have A love / hate relationship.
Pain managent is not a cookie cutter approach. May I ask, how old are you? Do you work?
For myself I do not work outside the home, I just started selling Avon, that way I can pick my own hours. When I was working, the Dr. I had managed my pain with Narcodics. I wouln't had made it without.
I went through some family loss, and personal stresses that skyrocketed the fibro symptoms.
This led to me stop working.
I can relaite with your frustration. Hang in there. Your welcome to private message me any time.
 

Koren55

New member
Joined
Jun 22, 2017
Messages
7
Reason
DX FIBRO
Diagnosis
08/2001
Country
US
State
Maryland
Moe,

I'm 61 years old. I'm on Disability - my employer forced me to retire in 2004, they said I could no longer perform the critical functions of my job. Their problem was they wouldn't let me, or others in my position, to work part time from home. Now, years later it's a requirement, you must work at home two or three days a week.

Like I said, I've tried everything and putting me on narcotic pain meds was a last resort.

Anyway, I did see those two pain doctors. The first one said they couldn't help me. The Doctor questioned me about fibromyalgia, said he wasn't sure if I had it, said there was no way to prove someone had it. He gave the impression that he didn't believe in it. He also said that today they don't treat it with narcotics. I told him that for me, they tried just about everything else and nothing worked. I asked him what they did with Fibromyalgia patients like me, where nothing else worked. His reply? We can't help you.

The second doctor didn't take time to review my history. If he did, he would've seen I've had numerous medical problems going back to the eighties. Instead, he blamed everything on me being on narcotic meds. Still, he thought he could help. Wanted to see if Nerve Ablation would work. I said I'd be willing to try the test - they inject the nerve with an anesthetic. If the pain goes away, then they'd schedule the nerve ablation.

Ive read that it might help with degenerative disc disease, but not so much with Fibromyalgia. I wasn't that comfortable with him.

I'm still scheduled to see another group on September 1st. This group approaches pain with a multipronged attack. They have acupuncturist, chiropractor, psychiatrist, physical therapist, and doctors on staff. My primary agreed not to turn over my pain meds to the nerve ablation doc until after I see this third group. They look the best because one of their main doctors has fibromyalgia. So I know they'll believe me.

I know I want off Fentanyl, but I need something to replace it. My State, Maryland,just enacted new rules on fentanyl. Because of that, a major pharmacy, CVS told me they're not going to carry fentanyl patches any longer. If more follow, it's going to cause a problem.

I do want to remind you that my dose of narcotic pain meds has been stable for years now. I've taken the 75 mcg/hr patch since 2008. Before that I used the 100 mcg/hr patch. I also take up to 90 mg of Oxycodone a day for breakthrough pain. Most days I take 75mg, but on really bad days I'll take the extra one just so I'll be able to sleep. That's probably 2 nights a week. Still, every morning I usually wake for pain about 4:00 or 5:00 am.

Koren
 

Koren55

New member
Joined
Jun 22, 2017
Messages
7
Reason
DX FIBRO
Diagnosis
08/2001
Country
US
State
Maryland
Moe - I know what you mean by stress affecting you. Stress most always cause me to go into what I call Flare Up mode.

That second pain specialist did a number on me. He stressed all my joints to see where pain was coming from, in doing so he created a lot of pain. The next day I went into flare up. When that happens, I'm in a lot of pain plus I'm super tired. I might sleep for the entire day. It's horrible. Usually they last a day or two. But he caused one that lasted the week. And shoot, I'm still feeling like I'm in one almost two weeks later. He really aggravated the arthritis in my hip joints. They've been extremely painful.
I know taking extra meds will help, but I don't go there. I do not want too increase it. That can cause too many other problems.

Kor
 

Koren55

New member
Joined
Jun 22, 2017
Messages
7
Reason
DX FIBRO
Diagnosis
08/2001
Country
US
State
Maryland
Okay, I saw the third specialist early this month. He was good, he listened to me, and understood why I wanted to get off Fentanyl.

I asked him if I would have any side effects if we switched to an extended release of Oxycodone. You see, I've been using a Fentanyl patch since 2001. The first 8 years I was using a 100 patch and 30mg tablets of Oxycodone for breakthrough pain. Around 8 years ago my doc switched me to the 75 patch and 15mg tablets, up to six per day. Doc said I should take 3 in morning and 2 in afternoon. And if had trouble sleeping, to take the sixth one before bedtime.

I've been stable at that dose since 2009. This new doc said we'd transition to extended release Oxycodone over two to three months. I'd finish the 75s then go down to the 50s and then begin the Oxycontin ER to make up for the difference.

Then over 2 - 3 weeks switch to the 25 patch with an increase to the Oxycontin. Then go down to the 12.5 patch with an I'm increase to the Oxycontin.

It sounded like a great plan. I was scheduled to see his Nurse Practitioner (NP) this past Monday.


On monday I first saw his Social Worker for counseling. Then I saw his physician's assistant (PA). She took my vitals and asked about pain levels and locations. She asked about my meds. I told her that because I had an elderly mother in Florida, that I could be called down there on short notice, that I kept a two week emergency supply. I told her that a few years ago I was called down and ran out of meds, that I had to fly back. I said my primary care doc was completely aware and understood my need for the back up supply. The PA seemed indifferent I thought that odd.


She then said they didn't have my doctor's report and needed that before I could see the NP. She said I could wait. I did. My appointment was for 1:45 pm. It was now 2:15 pm.

I read my book, and in the afternoon I tend to get really drowsy. It was quiet, warm, and I began falling asleep. 3 o'clock passed. 4 o'clock passed. I was half asleep when at 4:10 pm I was finally called up to the desk. His PA gave me two scripts and asked me to sign for them. I know I should have taken time to really wake up, but she rushed me to sign. Said not to fill them until next Monday, and to not start them until I finished off all my fentanyl patches - the 75s. Before I knew it i was ushered out of the of f ice a n d headed towards my car. I wanted to hurry to avoid traffic and really didn't think over what happened.

Once home I looked at the scripts. One was for Oxycodone, 15 mg to take every six hours, four per day. The other was for Oxycontin ER , 20 mg to take two per day. No script for fentanyl 50s. I went huh, must be a mistake. She forgot to write the Fentanyl script.

She was giving me a total of 100 mg of Oxycodone per day, only up 10 mg from my prior dose. 10mg of Oxycodone doesn't make up for a 75 fentanyl patch, does it?


I've left a message for her the next morning. Later since I did not hear from her, I left a message to the doctor. Yesterday, still no callback. So I left another message.

I see my regular doc on monday. I thought this doc would work out, I hoped h ed work out.

If I follow her scripts, I'd end up in withdrawal, and most likely the emergency room.

Crazy, huh?
 

HempVape92

New member
Joined
Oct 25, 2017
Messages
4
Reason
DX FIBRO
Diagnosis
00/0000
Country
Pak
State
Punjab
CBD Oil for pain becomes the treatment when no pain killers, Sleep aids are working. It offers a huge benefit to those who are suffering from chronic pain.
 

Tipnatee N

Very helpful member
Joined
May 8, 2017
Messages
594
Reason
DX FIBRO
Diagnosis
11/2012
Country
us
State
New york
I am new here, but not new to fibro. This week I found something that works great for my fibro. Pain, fatigue, and fog. It is kratom! It's illegal in my state of TN. But is not in KY. Which is literally across the road. I live on state line. But anyway...it works great! I use the green strain of kratom. Do so research on kratom and see If you think it might work for you. Hope this helps.

I've posted about Kratom last week , no responding on this site. You are the first who mentioning it ever! Sadly the DEA trying to taking it away and lots of state are making it illegal. I just about to try it too . I can't be more mad about this. :mad:
 

Karen44

Active member
Joined
Oct 15, 2017
Messages
43
Reason
DX FIBRO
Diagnosis
10/2017
Country
US
State
washingtonUS
My internist, PCP, is looking into LDN or Low Dose Naltrexone for me. It is relatively new. Ask your doctor about it. I bought the book, The LDN Book by many specialists and edited by Linda Else good. Have not read it yet but will soon. It has a section on Fibro.
 

Karen44

Active member
Joined
Oct 15, 2017
Messages
43
Reason
DX FIBRO
Diagnosis
10/2017
Country
US
State
washingtonUS
I did read the section of the book on Fibromyalgia. Very interesting and very hopeful. LDN treatment does not just improve pain but most fibro symptoms. Look up Low Dose Naltrexone online and see what you think.
 
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