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Adrienne Dellwo

Know Your Painkillers for Fibromyalgia & Chronic Fatigue Syndrome

By March 26, 2012

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A few weeks ago, I published a couple of new articles looking at a couple of common painkillers for fibromyalgia and chronic fatigue syndrome and promised that more were on the way.

The purpose of this series is to give you an easy reference for how these drugs work, what we know about them for these conditions, and what dangers they pose.

Here are the newest ones:

And in case you missed them, here are the earlier ones:

What works best for your pain? What problems have you run into with pain meds? Leave your comments below!

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Comments
March 26, 2012 at 6:57 pm
(1) JLM says:

Pain pills and anti-depressants never helped my pain. The best thing I’ve found is Myofascial Release Therapy (John Barnes trained only); it’s a form of gentle massage that applies pressue to the connective tissue. MRT actually stretches the fascia underneath the skin – it’s amazing relief. It makes a world of difference in my pain level & stiffness. Now…if they could find something to get us some deep sleep so our bodys can repair – that would be wonderful.

March 26, 2012 at 10:26 pm
(2) Abot Bensussen says:

The medicine that has made the greatest difference in my many years of suffering is Xyrem, (sodium oxybate). Once I was able to get deep and restorative sleep, stages 3 & 4, I left my bed and began living again.

I do use anti-depressives and opiates, Lyrica, exercise, massage and a regulated life, all of which helps me. Pilates, Feldenkrais, yoga, all help to keep me strong and flexible, and I am grateful to my teachers. None of this would have been possible without first getting good sleep.

I am hoping that research will find the cause(s) of this disease, and even the cures, before I die.

March 27, 2012 at 8:10 am
(3) RKO says:

Anyone seriously interested in relieving their fibromyalgia symptoms should skip the drugs and look for a supplement called d-ribose.

March 27, 2012 at 9:01 am
(4) Rachael says:

SSRI’s have always made “my symptoms” of ME/CFS much, much worse. That’s probably because SSRI’s cause serotonin to be passed between key cells in the immune system activating an immune response. My immune system is in need of calming, not activation, or stimulation.

SSRI drugs may restore a healthy immune function in people who are depressed and prone to infections (who have down-regulated systems), it is possible that they might also bolster immunity in others (who have up-regulated immune systems) to the point where they trigger autoimmune diseases.

Commonly Used Antidepressants May Also
Affect Human Immune System

http://biopsychiatry.com/serotonin/immune-system.html

March 27, 2012 at 8:21 pm
(5) Lori says:

I use time released Morphine,Vicodin,Lyrica, Cymbalta and though I’m going on my 5th week of the worst flare they help along with P.T. and my families expescially my Mom, who comes over after my husband and kids are home she spends all day every day with me.
Without all of these factors I don’t think I could function.

March 28, 2012 at 3:42 pm
(6) Pam says:

I am currently taking Cymbalta, Oxycodone, Diclofenac Sod, Gabapentin and Steroids (The seven day go from a high dose to the lowest). I have been diagnosed with Fibro, CFS, and now arthritis in my hands. Nothing is working. I don’t know what to do anymore. I have tried aquatic therapy, which is wonderful while you are in the water. Within hours I am in so much pain I could die! The Oxycodone makes me stay awake all night and the Cymbalta I cannot stop taking or I become suicidal, and the Diclofenac makes me dizzy and the Gabapentin makes me so sleepy, I will sleep all day and night. Combine all of them and I guess the Oxycodone wins! I stay up all night! What to do?

March 30, 2012 at 4:11 pm
(7) Carla says:

Opiates are the only drugs that help my pain, and I’ve taken various ones for 10+ years. When the med became less effective, my dosage may have been increased or another opiate prescribed. In 2009 I heard about the use of low dose Suboxone for chronic pain. After much research, I decided to try it. I began Suboxone 2m twice daily and within an hour or so, I experienced significant pain reduction. Before I began Suboxone, my average daily pain level was 7. After starting Suboxone, it dropped to 1-2. Even on bad days, the pain rarely gets above 5-6. Something I find odd is that Suboxone seems to work best on my fibro pain, but does not work well on my migraines or hip/shoulder pain. Although I rarely need it, I use hydrocodone for those pains. Suboxone has helped me enjoy my life and family more and am so thankful that I tried it!

March 30, 2012 at 4:13 pm
(8) Meshea says:

I am not against the use of supplelments, natural options, alternative treatments for FMS…but I do resent when those who advocate such act as if those of us who take medications are somehow “missing the boat to a cure”. I’ve tried a good deal of what’s out there… This is been a LIFE LONG PROCESS for me… I’ve made changes ONE AT A TIME to be sure what was helping, hurting, neither, both, etc. MY FMS responds to medications. I take elavil, ultram, wellbutrin, and pristique…and I thank God for all four of them everyday! I have a great relationship with each of my doctors. I take as little medication as possible…we all work toward this goal together…and my current treatment plan is the most effective I’ve had yet…and it’s not because I’m missing the boat on anything. FMS varies so much from person to person. Let’s stop pitting “pro-med” and “anti-med” stances. I accept that others do not do well on the meds I take and do well with other, even no-med options. Please accept those of us who do need meds…who are doing well because of meds.

March 30, 2012 at 5:14 pm
(9) GrannyCFS says:

I think I may have mentioned here before that I take a combo of meds: tramadol for fibro aches, gabapentin for neuropathy, and ibuprofen for joint pain (arthritis). I have other mysterious aches and pains, etc.. but its too much trouble to find out what they are. I’m very fortunate to be able to handle meds. So many cannot tolerate them.

A member of my family thinks the side effects make them not worth taking. But they don’t realize how awful I feel without them. So…

Anyway, initially I tried all kinds of supplements but none of them helped me. But the drugs do. Go figure. So… after 27 years of this, I’m happy with my meds and hope it stays that way until the Lord takes me home.

March 30, 2012 at 8:52 pm
(10) Nancy says:

I don’t take a lot of meds but don’t have a problem with others taking them if they work for them. I don’t understand why so many people give a list of many different ones and then say that they’re still in pain and the meds aren’t working. If they’re not working, why continue to take them? I would rather be as med free as possible if I weren’t getting any good results. If they worked, I’d continue to take them.

March 30, 2012 at 10:59 pm
(11) barney59 says:

I want to preface what I’m about to say with this…I realize that all of us who suffer from these insidious diseases will differ in what will help our individual symptoms. However, I feel I must share my horrible experience with Cymbalta. After being on it for over 3 years my Neurologists weaned me off of it because I was not getting any benefit from it any longer. Two days after my last dose, I went into complete withdraws. For the next 2-3 weeks I was completely incapacitated. It took nearly 3 months for all the withdraw symptoms to subside and for me to feel “normal” again. Cymbalta is a toxic drug. Doctors only know as much as Lilly wants them to know. Cymbalta is Lilly’s money maker so they are not forthcoming with the seriousness of the side effects when someone comes off of it. Just be very, very careful and do your due diligence before you begin taking it (or any drug) . I am now a true believer in alternative treatments!

March 30, 2012 at 11:17 pm
(12) Lyn A. says:

I believe I’ve had fibro all my life, but it crescendoed in the very early 80′s,when I was in my 30′s, when I was extremely ill & allergic to all foods except for 2. I have taken a number of diff. drugs prescribed by diff. docs over the years, but am very sensitive to many of them, with side effects like crazy. Two problems lately: migraines for over 10 years, more days with them than without. I did online research, & discovered a “rare” side effect from Premarin. With my doc’s guidance, gradually reduced & stopped the med over six months. I’ve not had a migraine since. Now, I’ve got restless legs – doc tried me on Sinemet, then Quinine. Neither worked & I felt awful. More research, & have carefully lowered my Elavil dosage over 1 mo. from 75 mg to 50 mg – RLS gone !

March 30, 2012 at 11:24 pm
(13) Lyn A. says:

Ran out of room above ! One final comment…I have decreased the Elavil, but now my arthritis pain is worse, & I seem to have more tender points as well. To date, I’ve found no painkiller that works, & heftier ones just about kill me off ! Upside to less Elavil – I am much “clearer-headed” and can think things thru now ! Love that !

March 31, 2012 at 7:44 pm
(14) Pr Chris says:

I have been self-diagnosed FMS since the early 1990s…and formally diagnosed only since retiring from the Navy, in 1995…the Navy did not acknowledge the syndrome, one MD going so far as to say that he’d never encountered a trigger point…

What makes me really frustrated is that Fibro is only one of the things I’m coping with:

A cargo handling accident in 1987 caused 3 thoracic fractures, untreated for four months until I got back to the States. By the time I found a PT who could find some effective therapy, almost 2 years later, I was in so much pain I could hardly stand it. Motrin was the only pain medication available. Needless to say, My Fitness Reports were not very good during this period.

Then, on top of all this, I was diagnosed with breast cancer in 1994, and had a recurrence in 2003. The result of the 1994 treatment included chemo fog, which ended my dreams of a PhD, and an inability to get through the day without sudden and complete exhaustion. My inability to get through an entire day severely limited my ability to function as a parish pastor, because of my need for a 2-3 hour nap daily. I retired from active ministry in 2007.

The best people in my life now are a wonderful Primary Care Physician, and a young pain clinic MD who has been compassionate and is working with me. I am on Oxycontin, Percocet, Soma, Cymbalta, Savella, and Zalepron for sleep. Every year we have to fight to get a one year approval of Provigil, an alterness med that allows me to function. It has been a true godsend in my life.

When I hear of some of the horror stories about limits on pain meds, expecially Oxycontin, in some States, I am truly grateful for where I live.

This blog has also provided helpful information since I found it some months ago.

Pr Chris

March 31, 2012 at 9:22 pm
(15) kim says:

I’ve used Marinol with some great sucess with the daily pain. However when I flare usually after stress, or illness hard to gain control.of the pain. Cleveland clinic is doing a great study on cannibinoids just need to wait for Ohio to legalize, since others on legal states have had great success in helping treat nerve pain with marijuana

April 1, 2012 at 3:10 pm
(16) amy lynn says:

I don’t understand the arrogance/judgement shown to people who take pain medication for this awful illness. If herbs work for you, or massage, i am so glad! I wish they did for me. I drink herbal tea at night and the heating pad works better than any pain med for a lot of things, but when you are so sick that you have spent about 80-90% of your adult life in bed, sometimes opiates are a good answer . That is what they’re there for – pain killers kill pain. And hopefully we have good doctors who keep an eye on how much and what dosage and those things.

The best thing we who share this sucky deal can do is share experience and encourage one another – while remembering that so far, sadly there is not one medication that helps us all. Keep searching for the best life you can live!! :)

April 1, 2012 at 3:17 pm
(17) amy lynn says:

barney59, thank you for sharing what you did about Cymbalta. I have a bottle of it that’s been sitting in my room for 4 months! Something in my gut – and my gut has been pretty spot on over and over – has been telling me to not take it. Hearing your experience helps me make this decision. I think the new and fancy meds that the DRUG REPS (they are sooo not our friends!!) drop of dozens of samples of and encourgae docs to give us – yes, you might be getting a ‘scrip on the word of a drug rep – someone who sells meds & never went to any medical or pharmeceutical (sp??) school!! Scary. It’s too scary to be a guinea pig, i feel safer with medications that have been around long enough so we have more data about them.

I hope you are doing better now!! Gentle hugs to everyone.

April 2, 2012 at 8:37 am
(18) Tracy says:

I started Savella a few months ago. It has helped with the energy levels immensely but has not helped with the pain. I was on Cymbalta before that which did help with the pain but not the constant fatigue. If I have to choose, I’ll live with the pain and take the energy. I can exercise again, get chores done and have lost a few pounds. Just wish they’d come up with something that could fix both at the same time!

April 2, 2012 at 11:54 am
(19) Jill G says:

My pain level is usually 6 on a scale of 1-10 with 10 being wish you were dead and 0 being not born yet. I also rest on the couch frequently. I’m not working right now as I’m recovering from cancer.
I use Tumeric, SAM-e and Acetyl L-Carnitine 400 mg. When I also use the SHINE protocol with d-Ribose and the other nutritional supplements I feel less pain.

April 2, 2012 at 12:07 pm
(20) Armando Abrero says:

Livign with fibromyalgia can be a real challenge.

If you suffer from fibro, or any rare disease for that matter, and you are in need of support, why not visit our sites?

Ben’s Friends Patient Community (www.bensfriends.org) helps 30+ patient support communities online such as http://www.livingwithfibro.org

Reach out and we are here for you.

April 2, 2012 at 1:28 pm
(21) Biran Sefar says:

I have not found much relief from FMS in standard medications. What I have found is a plethora of unpleasant side effects. I salute anyone that can use pharmaceuticals and find relief with few side effects. I don’t want to offend anyone, but the only thing that has ever brought me a great deal of relief with few side effects was medical marijuana. I once lived in a “med-pot” state where I could legally use this herbal treatment. To avoid smoking and to minimize psychoactivity, I would incorporate my medicine into foods. It was the easiest way to get the benefit without the “high.” Because of the economy, however, we have had to move to a state with a much harsher attitude regarding this herb. Now, I “white-knuckle” my way through the days and wait for the time when we can move.

April 2, 2012 at 1:29 pm
(22) Kat says:

As I have arthritis I am in varying degrees of pain daily. I was first put on Ibuprofen but that affected my IBS. As I get searing headaches because of the CFS, I can take Ibuprofen if I really need to. Then I was put on Codeine but that did little towards killing the pain & after about 5 months it stopped working altogether. Then I was put on Tramadol which was, for a while, my wonder drug. With the Injection Therapy & daily Ibuprofen I was pain free, able to run 3-5 miles 3 times a week, even doing Race For Life. But It lowered my seizure threshold & I started having multiple convulsions & other fits as I’m epileptic. This has caused NEAD (Non-Epileptic Attack Disorder) meaning not all the fits are epileptic. Then I was put on the Fentanyl patches. These were much more effective, except they kept falling off & I had 2 small children wandering around as well as my partner & my teenage son, the last thing we wanted was someone to stand on that, especially the little ones! Now I’m on 60mg Morphine a day & 10-15mls Oramorph UPTO 4 times a day. When I’m ill with my CFS I HAVE to take my Oramorph it’s the only thing that works but when I take that it makes me tired & drowsy.

With the CFS I get migraine headaches, sharp shooting pains across my back. My legs & arms go painfully dead (like when someone punches you so hard your arm is dead). And it always hits me after I’ve taken pain killingmedivag

So right now I’m still looking for effective pain relief for the pain caused as a result of my CFS.

April 5, 2012 at 7:09 pm
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April 25, 2012 at 12:42 pm
(24) ToniLynn says:

My doc put me on Cymbalta for my fibro but it wasn’t working. He switched me to Savella and I find it’s not working either. For the pain I take Tramadol, for the anxiety I take Klonopin and for sleep I take Ambien. The next step since the Savella is not working would be Lyrica. As for the Tramadol, it helps some but I still have many, many days where I can’t even stand to put clothes on, or even get out of bed. I’m at a loss for what to try next for the pain. I’ve read a lot of people here take narcotics. I’ve been trying to stay away from them because of the potential for addiction but as bad as the pain gets, I may have no choice. Frustrating!!!

May 31, 2012 at 11:36 am
(25) Jim says:

I an amazed at the wide variety of symptoms reported and the wide variety of treatments that are used or have been attempted. In the medical community there has been a rule of thumb that if you are not certain what the diagnosis is then make a good guess and try something. If the patient doesn’t respond adequately, then your diagnosis was wrong. Our current situation drives the medical and pharma community nuts. I am guessing that the name Fibromyalgia SYNDROME is the correct one. It is a syndrome, not (yet) an illness. Lupus is one f the few diseases which manifest in sometimes wildly different ways. Perhaps what we have has something in common with lupus. The standard practice of medicine is that if you are not sure what the diagnosis is, then make your best guess and then try the standard treatment for that diagnosis. IF the treatment doesn’t work, then you probably need a different diagnosis.

April 22, 2013 at 3:50 am
(26) Becky says:

My fibermyalgia is similar to my sisters post poliosyndrome. there are several studies going on that may eventually define the disease and symptoms.

December 18, 2013 at 1:33 pm
(27) Kelly says:

+1 on suboxone pain relief!! I was put on a suboxone program to ease withdrawl from those horrible opiates. It was a lifesaver!! Now, I’ve found that suboxone is hands-down the most effective FM pain reliever I’ve ever tried. Amazing stuff!!

January 31, 2014 at 12:57 pm
(28) mortgage refinancing says:

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