Drugs for Fibromyalgia: How Good Are They?

Most fibromyalgia sufferers will at some stage be offered a prescription for one or more of the officially approved drugs – Lyrica, Cymbalta, and Savella.

Many will ask their doctors two important questions: How good are these drugs and what harm can they cause me?

Many would be surprised by the answers they get – if the doctor is willing and able to provide them.

bigstock-Out-of-focus-woman-extending--34477478The concepts of NNT/NNH

One way to assess the effectiveness of drugs for pain management is by looking at the Number Needed to Treat (NNT) value.

The NNT value for drugs used to treat specific painful conditions is derived from large clinical trials that record the number of patients who report 50% or more reduction in their pain, compared to results from a placebo. The lower the NNT, the better the drug.

For example, if 10 patients with a specific condition are prescribed a drug and only one of them reports relief of pain, the NNT value for that drug is 10. This means that the other 9 patients will find the drug to be ineffective.

Continuing on the same theme, the potential for drugs to cause harmful side effects is expressed by another value – the Number Needed to Harm (NNH).

The NNH values for the three fibromyalgia drugs gives us an indication of how many patients need to be treated before one of them will report a harmful side effect. The higher the NNH, the safer the drug is.

By the way, it is well known that people taking placebo drugs can report adverse events.

NNT for Fibromyalgia Drugs

For Fibromyalgia patients, the NNT for Lyrica is 10; for Cymbalta it is 6; and for Savella it is around 8-10.

This means that only one out of 10 patients taking Lyrica (Preglabin) will have pain relief of 50% or more. Only one out of 6 taking Cymbalta (Duloxetine) will have relief of pain and only about one out of 8 taking Savella (Milnacipran).

NNH for Fibromyalgia Drugs

The overall values for side effects of each drug, when compared to placebo, and expressed as NNH are as follows: between 6 -18 for Cymbalta; between 7-14 for Savella 7-14; and around 6 for Lyrica.

This means for every 6 patients with fibromyalgia treated with Lyrica, one of them will report a harmful side effect. There is a wide range of NNH’s for both Cymbalta and Savella.

Some adverse effects are relatively minor and will not deter a person from taking an effective drug. Other adverse effects are more serious and can be a reason for discontinuing the drug.

In the case of Lyrica, randomized controlled trials have shown that doses of 600 mg daily produce drowsiness in 15-20% and dizziness in 27% to 46%.

Other side effects include dry mouth, weight gain, peripheral oedema (swelling). In another important review, it was found that treatment was discontinued due to adverse events in one out of 4 patients.

In summary, a minority of patients will report substantial benefit with Lyrica, and more will have moderate benefit. Many will have no or trivial benefit, or will discontinue the drug because of adverse events.

Is this the sort of information that patients would like to have given to them?

In my experience, the answer is a resounding YES. But as each person is a unique individual, it is impossible to accurately predict who will and who will not like a particular drug.

Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less, in human beings of whom they know nothing.”

These oft-quoted words by the French philosopher Voltaire [1694-1778] still have a ring of truth about them. We now know much more about the drugs we prescribe, and about the various diseases we have uncovered and classified. But we still have much to learn about the responses of individual human beings.

Those who have been awarded a diagnosis of fibromyalgia find themselves in a “double bind.”

On the one hand, the very diagnosis can arouse disbelief at all levels of society and, on the other hand, the available drugs afford most of them little, if any, relief of pain.

john quintnerJohn Quintner, MD, is a rheumatologist and pain medicine specialist in Australia who recently retired from clinical practice.

He has published numerous articles on chronic pain in Pain Medicine, Clinical Journal of Pain, The Lancet and other medical journals.

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41 Responses

  1. Ava says:

    Hi, I’ve had FM for around 12 years & apart from the odd flare up and weight gain the symptoms and the side effects were manageable with medication. That is until I tripped over a mat on Paddington Station nearly 3 years ago. Now I go into flare if I wash up let alone do anything major which can put me in bed barely able to walk, for anything up to 5 days. I’ve tried many things over the years including Gabapentin (no real help) Fentonyl patches (kept falling off & made me sick) Amytriptolene etc.
    I currently take Pregablin 600mg a day, slow release Tramadol 400mg p/d, Thyroxin 250mcg p/d (no thyroid doesn’t help with weight!), Ramipril & bendroflumethiazide 25 mg p/d each (high blood pressure brought in by weight gain), Citalopram for depression, Clonidine (HRT) & Amytriptolene taken only when I’ve had enough of being awake. Side effects include weight gain, very slow to heal from injury, constipation, brain fog, sleep deprivation, exhaustion, depression & lethargy. As long as I’m very very careful I manage to do some housework & cook occasionally but have to be prepared for the backlash. I work 2-4 days per month knowing that each day will put me in bed for 4-5 days. It’s no life. My kids & my husband are sick of it but are still supportive in the main – I don’t know what I would do without them.

  2. Dani says:

    I am in my mid seventies and was first diagnosed with FM in the mid 1970s. Later I did have a tumor on my parathyroid which was removed and helped but I’ve had the symptoms since I was a teenager and as one of my daughters has it also I’m pretty sure it’s genetic. Wondering why my pain tolerance was so bad in comparison to the rest of my family makes me now realise it was this and not me being a wimp. A damaged and degenerative spine doesn’t help which is becoming worse as I age so my heart goes out to all of you who suffer. I was on amitryptiline for many years which helped to a point but now manage on tramadol and take diazepam just when I’m into muscle spasms. I’ve tried everything you can possibly think of, including hydrotherapy, meditation, exercise, chiropractors, but sometimes it’s difficult in life to continue indefinitely apart from the cost. Pacing myself helps as does walking but I have to admit after all these years I still have low moments. I have taken time to come off medications though it is difficult but I’m aware my system needs a rest from drugs which can damage organs. Weight has also become a problem but again I just try to eat sensibly. I am curious to ask if any of you suffers have a feeling of internal cold just before a attack? I start feeling cold internally and despite the outside or inside temperature being warm I cannot get warm, then I know an attack is imminent, so go to bed with heat or use my infrared lamp and rest. Sleep is also a major problem and that needs addressing asap. Please don’t give up, I’ve cried buckets in my time, but I’m still here managing, though not quite so we’ll these days, but I will somehow with help from family and friends. Try to build a good support group around you with friends who know you, it helps tremendously. Best of luck to all of you fellow suffers I do know how you feel. I am about to ask my doctor about about Nucynta as the majority of the other drugs are too difficult to handle and I need to come off Tramadol for a rest to my system, as I have done with all the others.

  3. Achey says:

    Fibro a Total impact on anyone’s Life it Touches, Me I am finding it so hard now as meds don’t help, to many side effects anyway with these strong prescribed drugs, as we have enough to put up with daily with the amount of symptoms head to toe, I never in my life would ever think anyone could feel so much in there body, very distressing All the feelings of this as inside is in Total chaos & no Help what’s so ever, Only Drugs which is making everything worse inside, Fibro the name but we varie so much from one to another, A combination of complicated symptoms which they don’t understand so they name it Fibro, even if we are so different, No wonder we have Depression with this as its unreal every single thing about it, it just go’s on & on non Stop, I wish you All well, as so understand how life is for you & Family & Friends <3

  4. Beth Urmston says:

    I cannot add much to what has already been written. There is a fb group called Fibromyalgia UK which is increasing in numbers daily – the more people on the group, the more information shared and the more power we can bring to the fight. This site is not just for people in the UK nor is it only for fibro sufferers but for their family, friends, carers, anyone who wants to understand more about the condition.

    More importantly (to my mind) is the Charity Fibroduck EA. They are the only UK charity to be looking to fund research into a CURE for fibromyalgia, unlike the pharma companies. They do need help to raise funds for this. If the cure is found it will help everyone and for that reason I would ask you, wherever you are please take time to at least have a look at this. There are over 5 million sufferers in US and over 2 million sufferers in UK, can’t imagine how many in total worldwide. Together we can make an impact.

  5. Colleen Greiert-Virgin says:

    Hello. I have suffered intense FMSD for 50 years…since a horrible accident at the age of 10. So it’s been a lifetime of dealing with spine injury undiagnosed fibromyalgia because they did not know what to call it way back then. I was finally diagnose properly 20
    some years ago.
    I’ll try to keep this short. Almost needless to say, I have tried every physical therapy, medication, psychiatry you can imagine. In the end, the only thing that work for me was a combination of a muscle relaxer and Norco. All of the other medications made my life so much worse! I’ve just recently started Courage Center, so I have some hope finally. God bless you all.

  6. John Quintner, Physician in Pain Medicine says:

    @ Celeste. Thanks for your comments.

    As you know, I have been saying for some time that those conducting research in the field of Fibromyalgia have been, as you say, “barking up the wrong tree”.

    They have pursued a biomedical reductionist approach and have concluded that Fibromyalgia is “a generalized pain amplification state”.

    Of course this a tautological proposition that derives from circular argument.

    I see the need for a paradigm shift in our understanding of FM and other similar complex conditions. But this is an important subject for discussion & debate in a scientific forum.

  7. John, brilliant explanation of NNT and NTH. It can get confusing, but you have done a wonderful job in explaining it.

    The bottom line is that the drugs you mentioned, those approved for treatment of FM are woefully inadequate, whether it be from ineffectiveness or side effects. This brings us to the elephant in the room of big Pharma:

    “Are we barking up the wrong tree?”

    I am anxious to see what the FDA does with the information that they receive at the upcoming conference that had to be rescheduled. I had planned to participate remotely, but the new date is in conflict with my schedule. Here is a link to information and how you can submit a comment. http://www.fda.gov/forindustry/userfees/prescriptiondruguserfee/ucm363203.htm

    I urge all those reading this important article to submit your comments, use your voice. My comments have been submitted to both the FDA and the National Fibromyalgia and Chronic Pain Association, which will be making a presentation based on the compilation of information they have received as a result of patient involvement and they offer contact information and greater detail here http://www.fmcpaware.org/rescheduled-fda-fibromyalgia-patient-meeting-march-26-2014.html

    If we want to see change, we must use your voice. Could the session be longer? Sure, but that is not a reason to be dis-involved, instead, the FDA will see that as we are not interested in promoting research for FM. We must come together on this.

  8. John Quintner, Physician in Pain Medicine says:

    Tracey, what we do know is that for you, and for many others like you, drugs ALONE are not the answer.

    We also suspect that your problem may well be part of a whole body system disturbance – possibly due to activation of inbuilt stress response systems that can no longer switch themselves off when not needed. The switches are called “stress response genes”.

    To treat such a complex whole body system disturbance, one needs a therapy that engages the whole person. We call this the wHOPE (whole person engagement) model of care.

    Suggestions might include exercise (tailored to suit you), mindfulness meditation, relaxation, and various creative pursuits in which you can immerse yourself (such as art, music, photography, dancing etc.).

    On the research horizon, there is what is known as “immersive virtual reality”.

    I hope this is of some help to you. But I must also admit that we do need better theory to guide us in this important area of Pain Medicine.

  9. Tracey says:

    Hi im takin gabapentin & amitriptyline iv suffered with this pain for 2.1/2yrs only just been told I suffer frm fibro they aint offered anythin else so im suffering 24/7 no sleep I work full time & im not doing my job as I shud wot wud u recommend I do I suffer frm arthritis& osto arthritis im 46 yrs ov age thank you x

  10. Lucy Weston says:

    What is this new therapy your going to try lithocain?

  11. Lori says:

    Took Gabapentin for close to 10 yrs. and was able to function and work, but eventually it was no longer effective. I was on Lyrica for 2 1/2 yrs. and worked but still had pain. It was unbearable at the end of the day. Could not multi-task under stress, lost my job because of this. Tried Savella, did not work. Tried Effexor, caused my teeth to hurt, no help. Tried Cymbalta, helps some with pain but not a lot. Have peptic ulcer disease and cannot take anything now. IN PAIN, BAD.

  12. Patti says:

    I’ve had Fibro since before Dr. started acknowledging it as Fibromyalgia. I referred to it as migrational Arthritis. I was perscribed Elivial, by the time I was taken off I was taking 350mg in the pm. Before any of the Fibro meds came out they’re attitude was the deeper sleep you got ,the more that the Neuro-transmitters could repair the muscles.They’ve come along way. (Medical Science) Fibro is also known as a disease of a 1000 disguises. There are so many symptoms, other than Pain that goes along w/the Fibro. I encourage you all to research on the symptoms.
    I’ve only tryed Lyric, & it works for mr on the Fibro. I take Norco for pain, Xylocaine Ointment. I count my Blessing no side-effects. I wish I could say the Fibro was my only health issue but it’s not. Swimming is the best exercise when you can get to a pool.
    Good Luck to all Soft Hugs

  13. Robin says:

    I was on Lyrica, it stopped working after I took it for about 4 months, and I gained about 20 lbs. while I was on it. I was groggy most of the time too. I’ve now been on Savella for about 7 months now, and it has literally been a “lifesaver” for me. My pain has gone from a horrible (can’t function) 10 down to about a 2 (can live a normal life). It’s been a miracle for me. And, I don’t have any bad side effects from the Savella at all.

  14. Today I started a trial of lignocaine anesthetic infusion.has any one else had this and if so was it successful ? X

  15. Lucy Weston says:

    I have been suffering with Fibro for over 5 years tried lots of the normal medication mentioned above. My GP is brilliant and also because I suffer from Ulcerative Colitis/Crohns Disease which is an inflammatory bowel disease I have to be very careful what meds I take.
    At the moment I take Clonazepam x 2 at night to help with trying to get a proper sleep pattern. Also Pramapexole 2 strengths to help with my restless leg syndrome and the jerks I have. The only medication I take for pain relief that works now are Fentanyl patches 25mg changed every 3 rd day plus Morphine tablets OxyNorm 15mg up to 4 times a day. I have gone past the zombie part, but because they can constipate you I need to take 2 other medications to help with that because of my bowel problems.
    Also Zapain which is codeine plus paracetamol so I can drive myself to work 3 short mornings a week. I try really hard not to let my fibro get me down but I do now take antidepressant Cipramil 40mg and thyroxine a day. Altogether I take 22 tablets a day but I can just about walk 5 metres and then pain sets in. I use sticks and have a wheelchair but trying really hard not to rely on it.

  16. CJ says:

    Diagnosed after Epstein-Barre in 2006, I also have 7 ruptured discs, spinal stenosis, arthritis, blah, blah, blah. Cannot tolerate anti-inflammatories, tried all the usual suspects, and none did anything other than make me sick/dizzy/crazy.

    I took Tramadol for a year, and very little relief. Now taking small dose of Norco, and hate it…but it gives me a good deal of pain relief. It is, in fact, the only thing that does.

    I understand that traditional pain meds *usually* don’t work for fibro, but they work for me. Go figure.

    I am thoroughly convinced that fibro is either virus-based or is a reaction to a virus. I’ve known many other fibro patients whose onset coincided with an Epstein-Barre episode.

  17. marcella says:

    I have taken Lyric and Cymbalta and the side effects of both these medicines made me feel like a zombie. my eyesight was effected also. so i dont take them anymore.

  18. Ann says:

    I was on Lyrica for 3 years I had bad side effects, I was told by the memory clinic to come off it. I had the most horrendous withdrawal which went on for months I have never felt so ill and hopeless. Now I have come out out the other side I feel more alert I still have Fibro fog but nothing like I was on Lyrica, I can taste again I don’t have the dry eye’s and mouth all the time. I would say to anyone to try it as it may suit them but beware of coming off them.

  19. christi says:

    I’ve been using the Energy spray and Pain spray & lotion from Alma Naturals. There is some relief instantly and over a couple weeks the difference was incredible. I can only take 300mg of gab. at night as it makes me dizzy, so I had to find something for daytime. These have helped a lot. I also use the Stress lotion to keep me calm (very helpful when my son died last summer) and the Defense lotion to keep my immune system healthy. Anyway, its cheaper than most of the meds! Im also drinking tea with red clover and passionfruit.

  20. Karen says:

    I developed a severe fibro as a result of West Nile Virus. I also developed an unknown movement disorder. I have been taking a huge dose of Lyrica for over 6 ys now. It causes swelling in my legs and feet, but I take Lasix for that and it works. I also take Savella for the fibro.

    For pain I am using a Fentanyl patch. I am still in pain but it’s tolerable. Nothing else has been effective to relieve the pain. Unfortunately this also makes me a narcotics addict. but the addiction is medically controlled with cooperation between myself and my doctor. I’ve been on it for 6 yrs without any issues.

    I also have chronic fatigue and a lot of “brain fog”. I am taking Nuvigil for that and it helps immensely!! Without it I am nearly non-functional, unable to barely move let alone think. Some days it was all I could do to lay in bed and pray for enough strength to take another breath.

    I take Mirapex for the movement and Effexor for the anxiety and depression brought on by all of this. This illness has cost me my entire life. But we must deal with it and move on.

    I have found that swimming is very therapeutic. If I don’t have the energy to swim, just being in the water is very comforting. Doing a “dead man float” on my back releases all the pressure on all the joints and allows everything to relax and eases the pain. My doctor wrote me a script to swim as physical therapy and the local YMCA has allowed me to swim there free of charge.

  21. liz says:

    Im in england where it seems we dont have as much access to medication as in other coutries.My doctor says there is nothing else he can do as i have tried everything as well as morphine.I am on lyrica 675mg a day and my pain just gets worse by the day. i tried to come off last year slowly but i just got excruciating pain so GP said go back on lyrica it must be doing something!
    Any ideas from anyone in the uk i will try anything i have to get off lyrica as i cannot continue with this weight gain i no longer fit it plane seats and a lot of others plus costing me in clothes. HELP

  22. Betsy Jacobson says:

    In the 23 years during which I’ve worked on line with (30,000) people with FM(PWFM), I rarely heard a positive response to ANY medication. I always supplied people with FM several pages of treatment options and coping strategies, because there ARE ways to deal with FM other than chemically.

    I recommend that everyone who receives a prescription for a medication be very cautious of that med and study it well before taking it. In MY country (U.S.) the pharmaceuticals’ bottom line is so important that the patient’s welfare is often only secondary. A lot of work goes into selling that drug, and double blind studies aren’t even totally reliable.

    Just last month I retired from my FM work, but I’m still a health and drug activist. I wish you all well.

  23. Valerie says:

    dx w/fibro about 4 years ago, take savella and gabapentin, have gained 80 lbs… Craziness…. also have DDD and MS… also, undergoing tests for parathyroid, and in looking at symptoms… they parallel Fibro… its amazing the similarities. Fibro – no cure… Parathyroid, symptom free 4.5 hrs after removal of parathyroid… I choose parathyroid…. hope its is, and I may be symptom free and begin to shrink to my normal size… :)

  24. muñeca says:

    I took gabapanti stavalla and cymbalta and many antidepressants I’m allergic to antidepressant so still the insurence tell my dr that I need it to try a different medication . I was in lyrika it was working well and I did pt and exercise I eat every 2to3 hour and lost 48 pound . and the insurence got me in gabapanti and i gain 5 pound my teeth wete hurting and I had horrible stomach pain .and other problem . then they but me in stavella and almost kill me my liver is getting mest up and I was so depresst I got rashers all over my body . my dr was so mad that the insurence doesn’t want to pay for lyrika . and to tell you the true lyrika really lol ESN stop my pain but it at lest let me move and I can do a lil bit stuff combine with pt and walking with a cane at 37 yr of age that wasn’t in my plan my poor kids hate this sickness as much as my self and my husband thanks god he understand and love me he also hate this but more thewhat the medicine thoses to me he say fibromalgia won’t kill you but the medication will .

  25. Shannon says:

    I am on Cymbalta and Lyrica. Weight gain has been a nasty side effect for me. Pain relief? After being on both for over 3 yrs now, I can say that has been marginally better. Though I can say for sure that Lyrica helps with nerve pain.

    After a year of trying different pain meds, my pharmacist recommended Nucynta. It is like Tramadol, but stronger. Not as strong as Morphine. But there are NO side effects for me. No constipation, no zombie feeling, doesn’t make me feel high and if I miss a pill for a day, a week or longer there are no withdrawal symptoms either. Nucynta has a controlled release (CR) and instant release (IR) version for breakthrough pain.

    Ask your doctor and pharmacist about Nucynta. It’s the ONLY pain med that has worked for me.

    Shannon @ livingwithfibromyalgia.ca

  26. Paula says:

    No pain relief,,Only bad side effects…Thanks but no thanks..

  27. Judy says:

    I am on Savella (2/day) now for the pain approximately 6-8 months now. Took a little while to kick in but I was happy when it did. Any house work I did before Savella lasted for a 15-20 minutes max and I dearly paid for it with being down for a day or 2. With the Savella and only half of pain pill, I was able to (and wanted to) do 4 to 6 hours of housework (dishes, laundry, floors, cooking, etc.). But at days end I was extremely tired and was able to sleep w/o sleep meds but by 3 am I was reaching for a full pain med. I was able to do a repeat of day before with a full Savella pill & half of a pain pill. So that was 2 days of physical labor for 4 to 6 hrs each day. But on 3rd, 4th and 5th day I was couch or bed ridden. I felt like I had been standing on the 50 yard line with no where to go and both football teams were making a beeline for the ball I was holding and I ended up at the bottom of the pile up. I didn’t think I would ever quit hurting, But after 3 days something kicked in and I was able to do my 4 to 6 hrs of housework again. Same as before, I was good for 2 days and then down for 3 days, hurting just as bad if not worse. Pain meds only took edge off and used heating pads to help. Now to the sad part, I take 5 different meds 4 times a day, and one of them is making me lose anything and everything in my stomach and causing balance problems. I have rearranged meds, tried this one at this time and this one not with this one, but it wasn’t until I was doing one pill every hour (which was a pain in the backside) that I figured out which pill was making me throw up. It is several times a day of throwing up. It’s the Savella!!!!! Called doctor and he said to try halving my 2/day. So I broke them in half and did 4 times a day & went back to regular med schedule. Tried for 30 days but still losing everything in my stomach several times a day. Throwing up 7-8 times has got to go. Got doctor appt next week, hope he can figure out something out. 2 days was way better than 15 minutes, but can do with out losing stomach contents. Haven’t tried other meds for fibro, so I don’t know how they work. Any suggestions anyone?

  28. Renee says:

    OMGOSH.. only one thing that ever helped my fibro pain is Low Dose Naltrexone!! a.k.a. LDN. GOOGLE Stanford Medical School study with LDN for fibro. also join my LDN support group to learn more in my file section, see you there..

    https://www.facebook.com/groups/GotEndorphins/

  29. Christine says:

    I have Fibro also problems with my L4 L5 and S1 I have gone up the ladder of pain drugs and got to gabapentin and pregabalin. I refused it due to all the horrific side effects. My sister is on both and has tripled in size, her eyesight is now terrible and she has lost all of her teeth (she is only 47)!!! I know of a few more people that are on them too and the weight gain is incredible. Also the effects on their teeth. The thing I don’t get is surely the added weight from these so called good drugs be making the condition worse by adding to problems??? I also refused as I have suffered from depression since I was 18 now 41 and I am in a pretty good place so I didn’t want to mess with my head as another of the serious side effects are suicidal thoughts and effects on mental health. I finally got my Dr and my Pain Vonsultant to agree not to put me on these awful drugs and I am now going to have injections for my back. Be careful what you take people just cause the Dr says they will help don’t always believe them. Do some research. Weight gain is never going to be good for joints and overall health so why prescribe it?!?!
    Sorry I had to get this down somewhere.

  30. Manda says:

    I’ve tried a few fibro drugs including pregabalin, Gaberpentin, fluoxetine, duloxetine and painkillers such as tramadol, and so far I can’t tolerate any of them. Pregabalin made me feel like a complete zombie, and the others have made me very sick. Not sure if it’s becaipuse I also have Crohn’s disease that I react badly, but I’d really love some effective pain relief.

  31. Martha says:

    I started with Lyrica. Great results – horrible side effects. Then cymbalta – no results, again horrible side effects. Now I’m on gabapentin and that seems to be doing the trick for me. With little side effects. I’m not pain free by any means, but I’m coping really well. All I can say, is stick with it. You will eventually find a mix that works for you. That and you must stay active. Even if only little doses.

  32. Why do you think its from Australia? Although we have excellent health research centres we have very little research here on Fibro and rely on American and UK for breakthroughs which by the way are usually done by the drug companies. All the meds mentioned did nothing for me, Lyrica is gave me a purple rash all over and breathing difficulties within hours. So you’re right that we need to trial to see what works for us. After tralling all pain meds available the only ones that work for me is morphine and marijuana. I figure if morphine is going to shorten my life by continuous use I rather live a short life than be bedridden with no life. Marijuana is illegal here and I don’t smoke so I live in hope of a med thst works or legalisation of marijuana.

  33. David Buchanan says:

    I was one of the lucky ones with lyrica… It gave me enough relief to wind down the sensitisation and my brain to self right? I now work in a clinic where we are getting significant improvement with Cymbalta, Lyrica and Panadol osteo as a combo – BUT – the vital thing is that I run ‘3rd Space’ groups wherein we negotiate sense-making with people as it fits their life. In short the medication is one of the ambits here… What really matters is also how someone feels about actively managing their own life so they may engage in what Wittgenstein termed the full life. Only then does evidence match significance in a person’s life? Great stuff John!

  34. the shambler says:

    Wise approach, Josh. Meds help provide the upper hand in restoring homeostasis – if the approved drugs don’t turn it around there’s a void in choices. Certainly a DRI like Ritalin makes just as much sense as being prescribed an SNRI when devoid of any serotonin or noradrenalin assay (of serum, let alone neural levels!!), and the obstacles placed in front of lowdose naltrexone approval have led to underground ‘Dallas Buyers’ procurement! Once in balance then therapies such as yoga, mindfulness, omega-3, CoQ10 can maintain nearly-normie life.

  35. Josh says:

    After suffering with this for almost five years and trying all the kinds of approaches and medications I became very frustrated and read the literally thousands of pages of my medical records and did a large amount of research.

    I decided to take a different approach than is commonly used. I started to look at this as a pan hypothalamic dysregulation. I dropped all the medications I was on and instead asked for lamictal, and methylphenidate.

    Within a few weeks (5) the symptoms were almost gone and within less than four months the were completely gone. This was over two years ago. I only stayed on the lamictal for a few months. I stayed on the methylphenidate for a bit longer.

    I combined this with exercise, I know its so hard when we often have to have a cheering squad to just pick up a set of keys we have dropped in the ground, but it helps so much.

    I now use a blue therapy light, practice very good sleep hygiene, and engage in daily regular exercise.

    I have no symptoms at all.

    I would encourage people with this ailment to talk to their healthcare provider about this approach, because being in pain like that, and really what was far worse for me was the fatigue, is such a awful thing to try and deal with.

  36. John Quintner, Rheumatologist says:

    Wendy, I know many people are desperate to obtain pain relief and will try almost anything. As you say, the only way to find out whether a drug is going to help you is to trial it. But some people may decide not to trial a particular medication when they know the odds, both for and against. I believe that they are then making a decision that has been formed on the basis of the best available scientific evidence.

  37. kerry says:

    Lyrica I took for 13 days my body doubled in size my legs got so bad I couldnt walk I also passed out cold from the pain the leg symptoms have never gone away on a good dsy I use a walking stick or walker bad day I cant walk at all so hospital wheelchair never had leg problems ever before lyrica has wrecked me 4 life and thete is nothing I can do every medication 4 fibro I can not take side affects

  38. denise says:

    I have tried all 3 of these medicines and I can say for me….that they all sucked lol…I know its not funny but if you dont laugh you will cry all the time. I dont recall many side effects other than weight gain….and that I found hard to take…because I had lost 228lbs and the last thing I wanted to do was gain! Thank God my doctore was sympathetic….other wise I am sure I would not have been through several of these…..now I am not any of them but i refuse to be the angry woman that i was before i stopped them ….THANK GOD!!! I dont know if this has been helpful or not….but I put it out there and some have seen it lets hope the right ones have…..thanks…..denise

  39. dave says:

    John- great article.
    No bright light seems to have shined through the great pile of biomedical studies on fibromyalgia. But no doubt researchers will still try to discover and learn more about the wet biomarkers of fibromyalgia. Oh the games people play now….

  40. Bobbi says:

    I am about to begin Savella tonight- I am mostly concerned about the side effects being worse than the help. I have already been on Cymbalta- no help and major side effects, same result with the Lyrica. I wanted to try a different medication, but I have to try all of these, before my insurance will allow an “off-label use of another medication!

  41. Wendy says:

    I am guessing that this rubric may be from Australia? or is it just one usually used in medical circles. This is the first time I have heard that any of these medications are able to produce more than 30% pain relief!

    It is certainly of interest, but of more interest to the individual is how the medicine functions in them. The statistics don’t matter if the medicine doesn’t provide relief for you or produces intolerable side effects in you; the only way to find that out is to try it. Am I missing something?

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