arrow46 Comments
  1. Laurel
    Sep 30 - 2:44 pm

    Cort,

    I continue to be amazed by and grateful for the number of high-quality articles you’ve been cranking out lately. You are my go-to source for breaking news and in-depth reports in the field. Keep up the good work!

    Laurel

    • Cort Johnson
      Sep 30 - 3:15 pm

      Thanks. I’m writing away – that’s for sure :)

      • Marg
        Sep 30 - 7:03 pm

        Go Cort!

  2. Jane Millerick
    Sep 30 - 2:59 pm

    I do need to express an opinion on Lexapro as I was on a low dosage of that drug for a time. I have ME/ CFS and fibromyalgia. I also have been in treatment (before ever being diagnosed with the above) for major depression and anxiety.
    My experience was this .. I took that drug for awhile.. I was in treatment (my usual)
    for ME/ CFS/ fibro with a primary doctor, Dr Derek Enlander. his treatments have greatly improved my illness, although I am not well.
    I began noticing after a time some weird things going on with me in terms of becoming irritable for really no reason; mood swings, and some other things I cannot recall now as this was quite awhile ago.
    My pharmacist inadvertently helped me out; when I filled prescriptions one month, he had put the side effects info they print out in with my prescription.. When I got home in reading this, I was shocked to see that all these things I had felt were side
    course from Lexapro. Well, thanks Lexapro, but no thanks!!
    I do still take Cymbalta (yes; I was on both). It would be a cold day in hell before I took Lexapro again!!
    I will say I’ve been extremely sensitive to some drugs in the past which my doctors all know.
    I doubt I shall take Lyrica. Currently it’s the same as ever; I take Lectrolyte which for me helps both pain and brain fog.

    • Cort Johnson
      Sep 30 - 3:09 pm

      Thanks for sharing your experience with Lexapro, Jane. Glad you figured that out :)….Is Lectrolyte an blood volume enhancer?

  3. carol cripps
    Sep 30 - 3:05 pm

    Between my back and my arms and legs,the pain is almost overwhelming yet,the oxycodone,15 mgs,does not help my arms and legs. Plus the depression is getting really bad,caused from the pain and sleep problems..I don’t take much of the oxycodone,would like to stop it altogether,and take tramadol if I can find relief,with this lyrica/I was on it one time a few years ago,and had some unnatural side effects aka (Hallucinations)…Scared me..Plus the dr had put me on morphine..I later found that the morphine,was causing me to be short of breath,which at the time,I had been put on 3 different new drugs,so I stopped them all,out of fear.I have since discovered it was the morphine ,causing the shortness of breath..Do you think I should try the lyrica again,and some tramadol for my bad back.I don’t want to die with (DRUG ADDICT) stamped to my head….Thank you.C A

    • Cort Johnson
      Sep 30 - 3:14 pm

      That would be a lousy thing to have on your tombstone….jeez. I don’t know. Dr. Bateman finds that Lyrica is her best pain reliever but it only works in a third to a half of FM patients. I wonder if the morphine/Lyrica combination contributed to the hallucinations. Have you tried Low Dose Naltrexone? I think that or medical marijuana, if you can get it, would be my first choice. LDN is Dr. Klimas first choice for pain in FM/ME/CFS and she tries, I’ve been told, to get her patients off of opiates.

      • Devon
        Oct 03 - 10:30 am

        Lexapro was my demise. I’ve been on Cymbalta since 2007 and it does help. I was also recently diagnosed with Shingles at the age of 30. The pain is the absolute worst I’ve ever experienced. Muscle relaxers have helped me more than any opiate ever has.

    • Shawna OCalighan
      Oct 01 - 11:04 am

      Carol,
      The lyrica has saved my life. I rarely get any of the miserable die affects listed. I do take it alongside nortriptyline, hydrocodone and tramadol. Between the four and regular chiropractic care my fibro has had it’s ass kicked pretty well.
      I still battle with manic moments since I have so much to do and seemingly no time to do it all as I fight the fatigue. It’s a vicious cycle.
      On my really really bad pain days (like today, sadly) I’ve discovered a bath full of Epsom Salt and Sombra, a pain relieving gel like biofreeze or bengay, massively help my pain levels.
      I just pray that they find a way to fix us for good. That or more awareness. I’m tired of people thinking I’m faking my pain! Why would someone fake being in miserable amounts of pain?!

      • Cort Johnson
        Oct 01 - 12:17 pm

        Ha Epsom salts. Dr. Teitelbaum recommends them. It’s great when simple things work.

        Glad to hear you found a good cocktail….Pain may be the quintessential invisible illness; a close friend has incredible pain issues and looks great!

    • Debby
      Oct 03 - 6:46 pm

      I use Tramadol and take gabapentin instead of the Lyrica. My doctor told me it is only slightly different in molecular structure, and studies in Europe showed it worked just as well. Since it is a generic drug, it is less expensive as well.

  4. Abot Bensussen
    Sep 30 - 3:24 pm

    I couldn’t answer the sleep question, as I take Xyrem for sleep, and it knocks me out!

  5. Patti
    Sep 30 - 3:58 pm

    What a great article! I have had fibro for 22 years and tried many medications. Nothing has consistently helped because I end up getting side effects or they just stop working. I weaned off Cymbalta for money reasons. Unfortunately, it seemed to really help while I took it the last few years. I take oxy 15 mg and it only takes the pain edge away–still have lots of widespread pain. May try gabapentin again since is the cousin to lyrica but less expensive. I also take prozac for depression which has been a cheaper reliable alternative for me. Thanks so much for printing this article. Guess there is always a reason to continue to hope for a cure!!!

    • Onna keys
      Sep 30 - 4:34 pm

      Me too??? I’ve had fibro 21 years and nothing has helped like Lyrica w neuropathic pain and now I’m hearing it’s a death sentence and brain destroyer:( veryupset

      • Cort Johnson
        Oct 01 - 9:05 am

        Death Sentence? Brain destroyer? I hope not. Who is saying that? If Lyrica is working I would stick with it. It should be rebalancing your central nervous system – I would think that would be a good thing.

  6. Paula
    Sep 30 - 4:39 pm

    Interesting article. I’ve had FM for 25 years and it effects everyone so differently. For me, 1000mg of Tylenol works well with Ultram. I’ve been taking Ambien for 15 years and this lets me sleep, which helps cope with the pain. But the best is just moving! Walk daily, easy gardening and hot showers. And symptoms change so the key is to be nice to yourself and keep track of meds and how you feel. Also cut out dairy and feel much better. Do your own trials and document how you feel….. because you won’t remember :) Laugh every day, even if it’s thru your tears.

    • Cort Johnson
      Oct 01 - 9:04 am

      Thanks for tips Paula and relating your experience. I agree that finding something to laugh at can only help.

  7. Mike Groome
    Sep 30 - 6:01 pm

    I join the others in thanking you for the quality of what you’re putting out Cort. Thank you!
    I think I’ve mentioned before about how people are amazed at how I function on 600mgm of Lyrica and 30 of Cymbalta, as well as the Keppra I also take for the seizures caused by too much serotonin (No more tramadol!) plus a Norspan patch and panadeine forte. Its interesting, because I have the constant pain of osteoarthritis to control, as well as the pain and fatigue of FM/ME. So whilst opiates aren’t apparently effective for one, they are for the other. Hence the combination, which somehow keeps me upright and coping with driving etc., although I still find I can cope with only so much mental or physical activity. For example, we have moved into a new home and my wife is asking me how I feel about hanging a print here or an ornament there and I find I just can’t cope with that amount of decision-making/stimulus at once. I have to ask her to let me spend time looking and thinking. She’s had to cope with a lot, one way or another, with all I’ve been through in the last few years.
    After all that, I would be interested to hear if others with a dual diagnosis, i.e. osteo and FM/ME have fun juggling there pain management too!

    • Cort Johnson
      Oct 01 - 9:15 am

      Thanks Mike,

      Hey I know about decision-making – that ability really took a hit with ME/CFS for some reason….It’s bizarre.

      I’ll bet there are alot of people with osteoarthritis who end up having fibromyalgia/ME/CFS as well. You’ve got your constant pain input – at that point maybe all you need is for your central nervous system to bug out as well.

      Studies have shown a pretty high rate of ‘fibromyaglia-ness’ in osteoarthritis patients.

      :)

  8. Issie
    Sep 30 - 6:06 pm

    I couldn’t take Lyrica or Cymbalta –both were horrible for me.

    We need to take something to help with inflammation. We can mask the pain with meds —but, that’s not getting to the core issue. There are many herbals that will help with inflammation (Devils Claw, Turmeric, Ginger, Boswellia, Astaxanthin). But, then there’s the old stand-by Advil (if you don’t have issues with your kidneys —I do, so can’t take that). Then if you still need more help with pain after that – then put the Band-Aid on and mask it. I have found that Tramadol and Bentyl have been helpful for this. I not only have FMS but then got an EDS DX added to that. (Not to mention arthritis and spondylitis pain too.)

    Lot’s of new studies coming out. Got a new one last night. Good info coming out.

    Issie

  9. Gayl Hamilton
    Sep 30 - 8:08 pm

    Would love to see some studies done on acupuncture and brain fMRI changes…

    • sam
      Oct 03 - 8:58 am

      Hey, I currently take Lyrica, have been on it for 4 years now, after being unsuccessful with Gabapentin (too many side affects), I was then combining Lyrica with Amitryptiline, but felt like a zombie most days, so weaned myself off the Amitryptiline… but then discovered Acupuncture…. wow, it radically changed my life!! i cannot recommend it highly enough, especially with a traditional chinese practitioner… I went form 9 weeks of hardly being able to walk to 4 weeks after starting treatment , being able to dance all night at a party. I still take Lyrica, but the dose has been cut to 200mg per day… and i have acupuncture every 4 weeks now.

      I urge you to try it if you can :-)

      • Marco
        Oct 03 - 9:20 am

        Congratulations Sam :)

  10. Elena
    Sep 30 - 8:17 pm

    Hello, This article it’s interesting, however you did not mention the authors of this study. Is it the group of Dr Montoya?, it would be very useful if you make references to the original article or magazine where this was published.
    Thanks
    Elena

    • Cort Johnson
      Oct 01 - 9:02 am

      I did have a link to it but it’s pretty hidden – http://www.ncbi.nlm.nih.gov/pubmed/24040178. In the future I’ll post the title of the study in the blog – thanks for the reminder.

      • Elena
        Oct 01 - 1:58 pm

        Thanks a lot. You know without references it doesn’t look serious.

  11. Barbara
    Oct 01 - 1:28 am

    Just watched a TV program from the BBC in England, which showed at least 1 patient getting great relief from trans-cranial magnetic stimulation. Looks very interesting!

    Your articles are very informative and I read them regularly. Thanks for your hard work.

    • Cort Johnson
      Oct 01 - 8:59 am

      Yes, Transcranial magnetic stimulation provides real promise. I’m going to look into it more. Thanks!

  12. Cort Johnson
    Oct 01 - 9:07 am

    This was sent to another page on the blog…

    I was diagnosed with Fibromyalgia 7 years ago after suffering for more than a year. I also suffer from chronic fatigue and RLS. I take a steady stream of Lyrica daily that causes an extreme case of memory fog. I have a hard time remembering things that just happened or that I was on my way to do. I have also been taking Lexapro for the last 6.5 years.

    Prior to Lexapro, I tried Cymbalta and had a very bad experience with it. I had more severe anxiety and panic attacks, my sleep issues were far worse than my usual problems. I was awake with zero sleep for 7 days!!! On the 8th day, I quit taking Cymbalta and went med free for a few months, by far the worse few months of my life this far.

    A Lexapro/Lyrica combo has worked very well for me up until the last few months. Lately, I have increased bad days and far fewer good days. If I over exert on my good days, I pay for it big time on my bad days. My pain is an 8 all day every day and I am wondering why even bother with the meds if they aren’t working. Then I imagine the pain I could be in off the meds and I remember why I take them.

    My doc has given me Flexiril and Tramadol to help with the bad days but they are becoming and every day crutch just to be able to function even partially normal in order to be able to take care of my family. I am convinced that there has got to be a better way, we just need to find it.

  13. Michael
    Oct 01 - 10:07 am

    Cort,

    Thanks for another great article. I wonder how this correlates with those with ME/FM/CFS who have a partial Empty Sella? Also I have been on Cymbalta for eight years, although a life-saver I really question this length of time and it’s benefits. As a long time person who’s Subset for this illness puts me in the high pain category, this research makes a lot of sense to me.

    Thanks Cort!

  14. LisaK
    Oct 01 - 2:56 pm

    Thanks so much for another very hopeful article Cort. It really is sometimes the only med that works to keep me holding on when having such a bad time of it. Peace, love & continued strength to you as you continue to provide this great info :)

    • Cort Johnson
      Oct 01 - 5:56 pm

      Thanks Lisa, glad to hear you are on the Lyrica responders. I hope they are working on ‘Lyrica II’ which is even better. Lyrica with its 2-3 billion a year sales in the US certainly showed the market is there.

  15. Dawn Morales
    Oct 02 - 8:15 am

    Thank you so much for this article. I was diagnosed with Fibromyalgia last week. But I have been dealing with it for over a year and a half. I thought it could have been a gluten problem, some sort of allergies and my blood sugar kept dropping when I had sugar. So I cut all of it out of my diet and stayed away from gluten. I was getting frustrated and didnt understand why I felt so bad everyday. I am a photographer, and it takes me 2 days to recover from a wedding. I went in to a pain management dr for my back and hip problems. After a few exams and a whole lot of questions he tells me that I have fibro. His guess was that it was caused by the arthritis and the fact I have been in so much pain for 13 years. He tried to give me lyrica and after the first day waking up feeling like i was drunk and unable to function, i told him no. Currently he has me on gabapentin and norco. I have taken gabapentin before for sciatica and it worked great. It seems to be helping a little bit, but I have only been on it for a week. Now that I know what the problem is, I can take the steps to help it and improve my quality of life. My young daughters dont need to suffer because I am. The reality of it hit hard and I cried for two days. But I wont let it take me down. Reading articles like this gives me a greater understanding of the condition and gives me hope. Thank you so much for this.

  16. Zyp Czyk
    Oct 02 - 11:06 am

    Thank you so much for your work on this blog!

    I know exactly how much effort it takes to scan all the medical news, make sense of it, pick out the significant items, and then write about and present them in an understandable way. I know because I’m doing the same thing for Ehlers-Danlos Syndrome and Chronic Pain at http://edsinfo.wordpress.com.

    I’ll be following you on Twitter to “piggy-back” off your research because it’s closely related to what I’m doing.

    • Cort Johnson
      Oct 02 - 11:40 am

      Thanks! I look forward to reading your blog….and learning more about EDS and Chronic pain :)_

  17. Sarah R.
    Oct 02 - 1:23 pm

    Lyrica is the most effective single drug I’ve taken to reduce FMS pain. It also mitigates the ME sleep problems. I don’t know what I’d do without it.

    Thanks for the enlightening review of the study, Mr. Incredibly Productive!

  18. Sunny
    Oct 03 - 2:16 am

    I have taken it, and the side effects makes me worse off.:(
    Yes it kill pain, but it also kill your liver,kidneys and Brain…….:(
    Another drug that is Toxic:(

  19. Suellen Tritt
    Oct 03 - 7:39 am

    Beware LYRICA – IMOHO&E – It almost killed me! It grossly swelled my Optic Nerves, which can kill me IF they burst, and also take my sight! Also, medicating pain should not be done till ALL PATHOGENS are RULED OUT! (Both Biotic & Viral – especially in CFS/FM go to SPECIALIST, like Teitlebaum’s Clinics, with effective LAB to test for atypical pathogens).

  20. Beth Hinneberg
    Oct 07 - 6:36 am

    Byron J. Richards from ‘Wellness Resources’ wrote in Oct. 2009 that Neurontin and Lyrica are a death sentences for Brain Synapses … do you have any comments on that Cort?

    • Cort Johnson
      Oct 07 - 8:51 am

      I have no idea about that…Sorry..

  21. Chris
    Oct 09 - 8:22 am

    Cort ,
    I find it a bit alarming that you have no idea about the studies that have shown that Lyrica is harmful to your brain in long term studies . Having severe Fibromyalgia myself and hearing the others with it ask you about these studies deeming it harmful , and you have no clue about them . It is in the spotlight right now how it is harmful to your brain , and it is in multiple places showing these studies – so I wonder how you can possibly miss this ?? You don’t have to do much digging to find these studies . I am very concerned taking Lyrica for about 2 years now , that the long term effects are so harmful to our brains , and you have no idea about these studies – how is this possible ?? I would think that having heard it from multiple people you would do a little research on the topic . The studies are everywhere and very easy to find – simply google it and you will come up with many places to view these studies and the harmful effects of Lyrica . I hope you do look into it , and would love to hear your opinion on it . It is very alarming and the sooner the better you look into it because of the awful effects it has on people , you may change your mind about the drug and it’s helpfulness for Fibro patients . Thank you for listening !
    Chris

  22. wanda
    Jan 06 - 10:01 pm

    Thank you for the article. I have been on lyrica for 2 years(300 mg /day) and it is a lifesaver.
    I have fibro with arthritis of the spine and the pain is horrible.
    The lyrica is helpful,but does not kill the pain.
    In any event,with respect to the thalmus being the controller-I suffered a cerebral concussion 8 yrs ago , and a serious head injury. Chronic headaches and post concussion syndrome.
    The syndrome initiated fibromyalgia.
    The pain for headaches comes from deep inside the head, excruciating, I cannot even stand
    having an MRI-the noise gives me severe sick headaches. Earplugs dont help.

    I think you are on to something with the pain centre deep in the brain,keep up the good work, omg we need you guys out there helping.

    They did try every drug in the book(over 40 types) and only lyrica helped. It doesn’t kill the pain,it takes the edge off.But that helps. i was even up to 2400 mg gabapentin per day and nothing!
    Well, keep going , we need to find the answers.Thanks

  23. Melinda
    Jan 31 - 10:30 pm

    Hi Cort,
    Firstly, I think you’re doing a great job in disseminating a lot of diffuse information. You write very clearly, which helps those of us who have cognitive issues due to our health conditions.

    Having said that, it’s true that there are many negative reports on Lyrica coming to the surface. These normally aren’t given any priority coverage, or any coverage at all, in the medical journal articles that have often been written by researchers funded by the drug companies themselves. A recent case has just seen a doctor charged with 21 counts of ‘fudging’ research data; in fact in some of his so-called studies he actually made the data up. These results were published in the major journals like Pub-med. Let me see if I can find you the link:
    http://www.yourlawyer.com/articles/title/-doctor-accused-of-falsifying-drug-studies-pleads-guilty
    Sorry…you’ll have to copy and paste that by the looks of it. I have no idea how to turn it into a link for you. :)

    And here’s another article linking lyrica with suicidal ideation:
    http://www.yourlawyer.com/topics/overview/lyrica

    The following article is rather long and tedious but it’s worth looking further down the page at the Nervous System Adverse Reactions. The link to that page is here:
    http://www.rxlist.com/lyrica-drug/side-effects-interactions.htm

    I have personally suffered from a number of these extremely disturbing CNS issues while taking Lyrica. I would frequently not be able to discern whether something had happened or if I had dreamt it. I had to ask my husband to clarify for me. I also started to have mini-seizures – micro-second blackouts that happened perhaps dozens of times a day sometimes. My memory, already compromised because of my ME/fibromyalgia, then became worse. I began to ‘lose’ 2 or 3 hours at a stretch and was often told by my husband that I had been ‘raging’ and occasionally violent. I have always been an exceptionally calm and rational person. When I first went on the Lyrica, I had no problems, and noticed a tiny decrease in pain levels. As the months went by, the negative effects of the lyrica began and gradually worsened. Because it took several months to a year for them to appear, I didn’t make the connection. This appears to be a common experience for people. Many of us begin taking it without a problem, but as time goes by the damage seems to come to light.

    For me, the damage has been catastrophic in terms of the loss of my marriage and property…as well as my capacity to work and earn an income. My hearing is very poor also – and this is not an uncommon happening for people who take Lyrica. The hearing loss is permanent – never returns to normal, even after stopping the drug. Other people have experienced extreme vision loss – which also never returns to normal. I feel as though I have dumbed down and slowed down considerably (and who needs that on top of a condition that already dumbs and slows us down???)

    I would be very careful with Lyrica. I know that it truly does work extremely well for some people. But do we know if that will be longterm? Or will they begin to deteriorate over time? I’ve had a brain SPECT scan that shows decreased blood flow in three key areas of my cortex – frontal, temporal and parietal lobes. The pattern of reduced flow is indicative of alzheimer’s dementia. I’m 53 years old with no history of alzheimers in my family. I have read on a couple of different websites that lyrica is being linked with dementia also. I’m a little too tired to go in search of that information for you at the moment, but if you’d like me to, just let me know. I’d be more than happy to help keep people informed of both sides of the lyrica debate.

    For me though, it has been life-changing in the most damaging of ways. Thanks for listening to my rant. I’m currently following up on a class action suit. I’ll need half a dozen more Australians who have also been damaged by Lyrica to join me. If there are any of you out there, perhaps we can somehow co-ordinate an exchange of emails or something…whatever is the politically correct way of doing things. If you’re able to help, Cort, that would be wonderful.

    Thanks again for this great blog.

    • Cort Johnson
      Feb 01 - 1:03 pm

      Thanks for all the info Melinda. I note that a recent overview of the drugs available for FM was not very positive; lots of work to me done!

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