Hi I am new to this site. Been diagnosed since Feb 2015 and still am having a hard time dealing with all of this. Currently taking cymbalta,and neurontin. Still having pain daily and only sleeping a few hours at a time. Any good suggestions on meds, books, and exercise would be appreciated
Answer Summary
Members responded to a newly diagnosed person seeking help with medication and management for fibromyalgia, with many sharing that... Read more
Well my comments or opinion or experience may not be popular, and I know this is controversial. But in MY experience, none of the FDA approved meds for FM did anything for me (the stats are that these meds...Cymbalta, Savella, and Lyrica only help about 30% of sufferers, and then with only about a 30% reduction in pain).
So for the past 10+ years I have been treated by an MD (he is board cert physiatrist, sports medicine, rehab, and ran a FM clinic in the Army) who treats FM with narcotics. I started out being prescribed Fentanyl patches with oxycodone for BT pain. I was on the Fent patches for 7 years. Then I was on Opana for 1.5 years, and now I am on morphine. (Long and short acting) I am actually on about half of the amount of narcotics that I was on with the fentanyl patches, according to the equal analgesic charts.
Am I physically dependent on these pain meds? Of course. Do I need to be careful about addiction issues? Of course. I signed a 4 page narcotics contract, have to be seen once a month in person to get refills, am subject to random drugs screens. But I have been so depressed in the past from the unrelenting pain that I didn't want to go on. So FOR ME, this is what works. But strong narcotics are not for everyone, and you have to be careful to follow all the rules.
As for the rest, I see a psychologist weekly, have had to learn to pace myself, and accept the fact that I can't do many things, at least like I used to. I am on disability now, but was an RN and worked 12 hr shifts in a busy ER. I havent been able to work for over 15 years, as I have had FM for about 20 yrs. The mental and emotional acceptance has been as hard or harder than dealing with the pain and exhaustion.
I don't know if I am being helpful or not, but I felt you should know that despite what you might read in the literature, narcotic pain meds DO help the pain. It's not the best route maybe, but when nothing else works, for me it has been necessary.
Now, before anyone criticizes or blasts me for anything I have said, based on MY needs and experience, I would ask you to first tell me, what I should do instead to treat the pain?
They will have to criticize me also, Trisha... because the pain was unbearable. I have osteoarthritis along with Fibromyalgia. I've had both knees replaced, two vertebrae in my neck fused together, have no disks at all between the vertebrae in my neck, have Adult Scoliosis, a sciatic nerve being pinched in lower back, fractured skull from falling out of our family car when I was 4 years old, had breast cancer and a mastectomy of the left breast...so thankful to be cancer free since 2006... praise the Lord.... now need to have either a shoulder replacement, or tears repaired in muscle tissue or cartilage and won't know which until I meet with the doctor the 28th of this month, all of this has been since 1940.. I'm 78 years old. I've been on Fentanyl patches since 2006.. and other narcotics off and on for at least 10 years.. with some of them. I've had people make me feel so guilty for using them. I don't know what else to do. These meds have at least allowed me to get out and go. I see a pain management doctor regularly. I can't take Arthritis meds(anti-inflammatory), as I have acid reflux to the degree that it is a pre-cancerous condition from taking anti-inflammatory meds for so many years.. that is part of the reason for the pain meds. I'm doing the best I can and know how.. I'm not doing anything illegal. I'm tested regularly to be sure I'm taking only what is prescribed. I'm thankful for my pain management physician. I'd like to be off anything I can get off of. I'm always checking anything that is natural to use that is not a narcotic. I thank the Lord for all He has allowed me to have and for those that help me. through all this.
It's hard and I thank the Good Lord for getting me this far. I have a hand held massager that I'm able to use.. or let me rephrase that..... my neighbor uses it on me to relieve that terrible pain from muscle spasms. It breaks the cycle of pain and it sounds crazy, I know. My neighbor and my sister.. sometimes,, just almost laugh, when the pain just suddenly stops as my muscles in my back just suddenly release. I was so excited to be able to travel with my sister and her husband, 6 hours to my granddaughter's wedding two weekends ago. I had pain but was able... with the massager that my sister used... several times while we were away... to attend the bridal luncheon on Friday at 11:30... rested and then was able to attend the rehearsal dinner that evening and then the wedding the next day at 5 p.m. It was wonderful. It took several days to get over all of that bit so very thankful for being to go. I'm blessed that my neighbor is able to use this massager on me and helps out. I'm doing the best I can. I read you had used Fentanyl patches but were using something else now. That's what each of the 3 different pain management doctors I've been with, have recommended for me and am still using. I can use Hydrocodone and Oxycodone oral solution.. in between for break through pain. I've had a hard time with my pain management specialists. Two of them have had to leave the profession. The first one had an episode that caused him to have to retire from being a physician completely. His physician told him he had worked too hard and it had caused him to develop a type of pain in his muscles. Then the second one...each of these men were wonderful dedicated Christians and I miss them so much. The second one suffered from Migraines and he had to give up his practice and go to a pain clinic in the mid-west somewhere that is a teaching school, of sorts. I'm interested in what you are on that seems to be taking care of 90% of your pain. I think what I'm on, is a good mix for me but I just have such a bad back and now am scheduled for shoulder replacement surgery on September 16. Not looking forward to that at all. But.. maybe that will relive me of some of the pain in my neck area. At least that is what this new Orthopedic surgeon says... and the pain management doctor as well. Hope this helps. I rest a lot and am not able to do what I once did but do keep busy. I have a lot I do at church with my Sunday School Class, the prayer group, and keeping track of the CD's of the sermons for those that need to give a copy of the sermons. Most have the internet and can listen to them and don't need the CD's.. kind of old school now..... I have some rental property that I have to keep up with. Have a good day. God Bless!
I wrote this long note to you and I think I just lost it, but the just if it was know one has the right to criticize you for your choices you do what is best for you after you have tried and studied the options. I was an RN too and am disabled from effects of chemo for breast cancer. It caused fibro according to my oncologist. Keep your head up and do what is best for you. Don't let any one (blast) you because of your choices.
I also agree with TrishaBrasher. I also take narcotics and am drug tested every six months. I need to go to appointments every month and if I don't I and not allowed any meds until I am seen. (they will not let me run out). I need to make an appointment in order to get enough meds until my next appt. Am I addicted? Yes.. Will I go through withdrawals, Yes, but without them I can not get out of bed in the morning. I take morphine, dilaudid, muscle relaxers, cymbalta, tranqullizers, and even a couple more. Would you know that I am on that much medication? NO. The medication goes right to the pain, and I do not get high at all. If I do not take them right, I might but I take as directed. Pain clinics are your best answer and don't be afraid of pain meds. Without them, I would be in a full-time wheelchair. Good Luck...