1. Joelene Didora Joelene Didora Canada says:

    I have been suffering from this for 20 years now and still haven't found anything to help me cope with the pain.

    • bonna weinstein bonna weinstein United States says:

      Dear Jolene... I feel your pain. I too suffer this curse for almost 15 years with severe fatigue and debilitating pain I do not wish to Anyone else. I take Tramadole (a prescription med.) three times a day. It helps more than tjust aking the edge off.  I can actually function. You may want to give it a try. Hope you find some relief.... Best of luck !

      • Donna Zegalia Donna Zegalia United States says:

        I have been on tramadol for about 7 years. Its the only thing that really works for me. I've tried all the other stuff and nothing helped. I also get myofascial release which has been helping, also. I also take Ultra ER at night otherwise I wouldn't sleep.

        • Janet Thompson Hurguy Janet Thompson Hurguy United States says:

          I've been on Tramadol for eons...it doesn't seem to do a thing. I've tried many, many things. I finally tried Plexus products which really worked but unfortunately, I can't afford to keep buying the Plexus products. I wish natural stuff was covered by insurance like prescription meds.

      • Mary-Rose Wilson Mary-Rose Wilson Australia says:

        I was diagnosed with Fybromyalgia and associated chronic fatigue in 2001. I was working as a secretary which involved mainly keyboarding. I was in a very stressful environment. Once I gave up my position as a typist and got out of that stressful environment, I started to improve. Winter is the worst, so stay warm. Have hot baths to to relax your muscles. Pain increases pretty much after doing physical chores. Take magnesium to relax the muscles. Do a low impact exercise program and get plenty of sleep. I manage my condition very well but also have flair-ups from time to time. I also see a physio for some relief when flair ups take place.  Your physio will give you the correct exercise program to maintain your strength. This is so important to keep strong. The less you use your muscles, the weaker you become. This is just some advise as we have to learn to live with the condition, so we have to manage the symptoms and give ourselves the best shot at living a normal and pain free life. Don't give up! Mary-Rose

        • Ellen Gershenbaum Ellen Gershenbaum United States says:

          Get plenty of sleep? LOLOLOLOL...I get 3 hrs a night, max. The pain wakes me up. No sleep or pain meds work. What a joke!

        • Randi MacDonald Randi MacDonald United States says:

          Magnesium really does help me, and it helps me with my restless legs at night, so I can sleep better. I also take rx Ibuprofen, tramadol, topiramate, and generic effexor(bi-polar as well) this is the first time I've heard that hyper-sensory issues may be related to fibro....is anything NOT related to fibro? lol

        • Kim Hurrell Kim Hurrell New Zealand says:

          Thanks for posting Mary - Rose. Yest I finally got a rheumatologist diagnosis of fibromyalgia. I've Ave been symptomatic for 10 mths now with gastritis TMJ pain & muscle aches since thyroidectomy 11 mths ago. No meds from docs only more tests!!! I have now been  put on a serotonin uptake antidepssent as a trial. Initially was insulted but gonna give it a    go. Have you had any success with antidepressant type meds for   pain relief? My post exertion aches and nausea last for days. So  is bloody all so impact full & life changing. I was a spring chicken  a year ago and now feel like an old hen! Thanks again for sensible suggestions. Kim

          • Melissa Janeway Melissa Janeway United States says:

            I know it's been awhile since your post... but it's not like the issue goes away, so I'm going to answer your question.  Many psych meds can be helpful for neuropathic pain.  The basic serotonin mmeds aren't really one of them.  For pain, the SNRI's (cymbalta, effexor, prestiq, and there's another out now) are the primary first-line meds.  Then you have the TCA Amytriptyline (which is also commonly used).  Finally, the biggest fibro med that's classified as psych (but in a class all of it's own) is Lyrica.  Topamax is also sometimes used... but I'd refuse that one, personally.  For nausea, I take Zofran.  I highly recommend it above the others.

      • Kari Shutt Kari Shutt United States says:

        I also take tramadol every night. It does help. On really bad days when I can't get out of bed then I will have to use my Vicodin...

    • Donna Craig Donna Craig United States says:

      Joelene, I have had it over 30 years.  Everything they give me for pain causes me to be so tired and it really doesn't do much for the pain, I would rather go without than be so tired all the time.  I keep praying they will come up with a miracle.

      • celeste ingram celeste ingram United States says:

        thc treats this magnificently, did you know if you carry the gene for it, when your young if you get seriously hurt, it will show up, almost immediately, I've been dealing with this for almost 20 yrs., lived with it for 10 yrs. before I tried that,.... I'm 28

        • Karen Chervinskis Karen Chervinskis United States says:

          Hi Celeste, do you know where I can find more information on your statement?  I was in a very serious car accident, when I was 14.  The majority of my injuries were in my neck and head.  I had 156 stiches in my head.  About 3 or 4 years later, I was going to the doctor complaining of fatigue, and pain in my shoulder and back.  Reviewing my chart, I was given pain meds and muscle relaxers all these years.  However, I was never given a diagnoses.   Moving forward, my condition has become unbearable physically, mentally and emotionally.  I was in the dental field for 32 years, and resigned my position in June 2013.  This is when I was diagnosed.  Fibromyalgia has hindered my ability to live a normal life.  My insurance is with the military, so my providers can be changed at anytime without my knowledge. I am not able to see a specialist, so my pc is attempting to treat me.   That being said, I am trying to find articles that might help him treat me.  What is thc?

        • Ellen Gershenbaum Ellen Gershenbaum United States says:

          Weed (thc) does not make the pain any better; it just makes you care a little less, which is fine with me.  it is no panacea.  the truth is, nothing works.  they have no answers,  whatever you do, DO NOT take what they suggest in the article...gabapentin (neurontin)is an EVIL drug and doesn't work...it's for sciatica.  made me gain 50 lbs in a yr and my feet swelled up like balloons.  my right foot is still fucked up.  google it and see.  lost half the weight, trying to lose the other half.  been thin my whole life until i took that drug, and the pharma co's are laughing all the way to the bank, thanks to us.  docs hane NO knowledge of the side effects of these meds.  Take this, take that, and you live with the horrendous side effects.

          • Teri Wilson Teri Wilson United States says:

            I was just recently diagnosed with fibro and my Physician put me on Gabapentin. I've been on it for almost a month. We went over the pros and cons of four different medications and I chose Gaba. Due to my research it seemed to have the least negative side effects, plus it was supposed to work for RLS, which I suffer from. Initially it seemed to help within the first week or two, now nothing. I am back to waking up every night due to the pain. The one thing that it has helped is giving me mental stability, for which I am grateful. I have actually lost ten pounds since I've been on Gaba, I don't seem to have the bored, or depressed eating needs anymore. So, for me, I have liked the benefits of it but it doesn't help with the fibro. Sigh...

            Several years ago I had a knee injury and took Vicodin, that helped with my all over pain but my Doctor won't give that to me. I'm frustrated and I'm just starting this journey -- not with the pain, but with finding some sort of relief....

            • Cindy Charamut-Glines Cindy Charamut-Glines United States says:

              Right now I take 2700mg of Gabapentin, 225mg of Effexor, 50mg of Topamax twice daily, 1mg 1 1/2 Klonipin at bed, 10mg Ambien at bed, 10mg Lisinipril, 10mg Simvistatin, 40mg omeprazole, 20mg Loratadine and 50mg Robaxin twice daily. I have Osteoarthritis, Degenerative Disc Disease, I have Bariatric surgery and lost 107lbs, TMJ and I am have surgery on the right side of my jaw on Dec. 3 because it is dislocated and the Trigeminal nerve is pinched (very painful),knees are shot right one really bad. I recently had an incident where I thought I was having a stroke speech was really bad and the headache was terrible it was my Fibro and that is when my Topamax was increased I was scared to death. Four and half years ago my fiancé passed away and I found him sitting up on our couch he was 50. The trauma made my Fibro worse and it has not stopped since. I also was in a motorcycle accident 11 months after he died on his motorcycle. I had a nervous breakdown at my job 8 months after he died and I cannot work because of my physical and emotion health. I have always worked  many years 2 jobs or self employed owning my dog grooming businesses. I am only 53. Depression, anxiety, PTSD,Pain,Frustration,New symptoms,relationship issues and losing friends and especially having family walk away and I don't know why. I hate Fibromyalgia and being in pain fronted to toe everyday. And the worst is having to say I don't feel good and knowing even my boyfriend doesn't get it. It is not like I stubbed my toe. I see a therapist every week since the death of my fiancé and she is great. But year after year of this illness is hard. I have great doctors but this illness is  so unpredictable. I just wish you all the best with your battle. Relief is a hard thing and I have no answer. Understanding is what I wish I had from family and friends.

              • Denise Wadsworth Denise Wadsworth United States says:

                Cindy, I have almost all of those symptoms and then some like Rheumatoid Arthritis so trying to figure out which one is flaring is a chore. I am so sorry for your loss. Dealing with this disease alone sucks, I have had it for 30 years so I know some of my warning signs.  If you need to talk just let me know and I will send a phone number or Facebook message me. Here is me sending you a big hug through the wires.  Have a happier day.

              • Captain Jack Captain Jack United States says:

                I suffer from Hashimoto's Thyroiditis and Fibromyalgia and have had Fibro pain ever since 1975 and there has only been a handful of days in all these years where I was actually pain free.  I too have tried everything under the sun and then some and it wasn't until recently I saw a pain doctor.  He initially put me on extended release flexeril (Amrix) and it made me feel worse so I quit taking it and looked it up only to discover it was just extended release flexeril which I had tried multiple times in the past so then he put me on percocet and it is the first med that has given me some relief.  I do not take the entire pill, I cut them in thirds and only take 1/3 in the AM and rarely do I have to take more than that. It doesn't relieve the pain in its entirety but it deadens it enough so that I can function.  I try to go to the gym to exercise and I pay for it for several days just with a 45 minute light workout. I know the addictive risks of opioids but as far as I'm concerned the benefits outweigh the risks. I understand your pain and if those who have abandoned you could only experience what we go through for a month they would look at it differently.  Trust me, multiple doctors and every med that you could conceive of was tried on me from Xanax to antidepressants all of which made things worse for me.  Honestly I would rather take nothing, but I have tried, and things become unbearable.  I wish you the best and hope that someday there will be something to rid this horrific illness.  Feel free to contact me, it would be interesting talking to someone else with the problem to see what they're experiencing.

            • Melissa Janeway Melissa Janeway United States says:

              If you haven't switched meds yet, an alternative to Neurontin is Lyrica.  They're both gaba meds..  Lyrica just tends to work better for nerve related pain.  Mental health wise, I believe they're fairly equal.

    • Joanne Wallace Joanne Wallace Canada says:

      I hope this helps - I have been prescribed 10mg of Citalopram Hydrobromide (Celexa) and 60mg of Amitriptyline HCL (Elavil). They are both anti-depressant medications and they have given me back my life.  I still have pain and tingling and such but it is manageable.  I am able to hike with my dog and laugh again with my children.  My sister-in-law is an RN nurse practicing in pain management and she has also seen success with Amitriptyline.   Good Luck!

    • Alexandra Smith Alexandra Smith United Kingdom says:

      I've been suffering for nearly 40 years since a viral meningistus attack. The ME has been with me since then, only coupling up with Fibro pain for the last 8 years. I now have cerebella atrophy and am on all the pain killers possible but nothing completely kills the pain. Lately I've started taking codeine at night with paracetamol, both on prescription. It lowers the pain enough for me to sleep. Most of the pain is in the legs when attacks come and I've recently started wearing support stockings which also ease the pain during the day. Keep up your fluids as we tend to be low on that. Take the advice of Ali Hill below and get the amino acid and high vit B12 supplements if you can't get the B12 injections from your doctor. Don't go on an extremely low salt diet as this is something we are also short on. No fat diets are also bad. Keep a small level of good fats going, Virgin Coconut oil, butter, little bit of fat on meat. Don't cook with the coconut oil, put it on toast, it's not strong flavoured. Lemon and honey in warm water in the morning for the liver, I find this works for me.

    • Emer Dunne Emer Dunne Ireland says:

      As the article suggests the non drug therapies such as essential oils can help with fibromyalgia. Oil such juniper berry, lavender, roman chamomile, marjoram are a few that I've recommended for my patients with Fibrmyalgia, i'm a physical therapist and they get some relief from using these oils along with PT treatment... Hope it helps.

    • Sharon Smolka Sharon Smolka United States says:

      I've live with fibro. for 30 years now. I've fought hard to stay off of narcotics because so many get addicted to them. What has helped me the most is exercising/swimming in a warm water pool. Also physical therapy during a bad flare.

    • Elizabeth Hewitt Dawes Elizabeth Hewitt Dawes United Kingdom says:

      My Husband has recently found out hes got this awful illness and I hate seeing him in such pain but I'm glad to say I signed a petition to get a Patch put on NHS. The patch is called ACTI PATCH you can buy it at your big Boots  it is pricey but worth every penny it last up to 720 hours and costs £16.00, if you purchase one try get the one with the belt as the patch its self comes on it's own for same price. Since my Husband has worn his and only takes it off to bath I can honestly say it WORKS and I'm pleased to see him smile instead of looking in so much pain, like he tells me the pain is there but NOT as bad and most of all it's chemical free so ya not damaging your organs and your not putting chemicals in your body. Good Luck if you try it.xx

    • Mary Miller Mary Miller United States says:

      We are individuals, and because this condition is still considered a "syndrome", meaning more than one way to get this condition,  still means, there is no one way to 'attack' fibro pain. Saying this, does not mean don't try anything that could help.  It's clear from this article, that they want you to not use opioids or other analgesics for pain, but for SOME this is the only relief they get.  It's a new "deal" now to pull everyone off of opioids, and in some areas, (like Montana) they will not even bother prescribing them for fibro.

      Personally, having spent years involved in the "fibro fight" since 1986, I can tell you that opinions (and findings) come and go.  Very few people btw, get any relief from Lyrica (which I believe is the aim of this article is intending when discussing peripheral pain, otherwise known as neuropathy.  The statistics on this drug are not well liked by users:  less than 20% find any relief from this drug, because it just doesn't cut the pain, leaves people groggy, and unable to function.  The older method of SSRIs, and SNRIs are also a problem for many, because of something called "serotonin syndrome" that doctors know little about, but is life threatening.

      There are many non allopathic methods suggested here (amino acids, Acti Patch, not in the US, essential oils, acupuncture, et al), so I am adding in my voice:  cannabis.  Yep, the dreaded word.  As with anything suggested here, what works for one, may not be the answer for you.

      There are blends of cannabis strains (called hybrids), that can relieve pain without getting stoned (HIGH CBD, low THC) but you need enough THC in the plant so you get pain relief.  No one is advocating getting stoned. No one is also advocating smoking it either.  Cannabis can't kill you.  A factor not found in Opioid treatment (remember I said something about serotonin syndrome?  This is part of the problem with over dumping the system with serotonin leaving the person with severely high temperature, nausea, vomiting, diarrhea and systematic shut down).  

      As someone who managed NOT to die from serotonin syndrome, what I can say is that I am only left with cannabis as a treatment specifically to deal with pain.

      I would highly suggest before attempting anything alternative, to find a good practitioner, naturalpathic, homeopathic, nutritionist, herbalist, or complimentary medicine doctor of any kind that is best able to suggest YOUR course of action based on YOUR body, and your fibro.

    • Denise Wadsworth Denise Wadsworth United States says:

      I've had Fibro for 30 years and I've been on several drugs for it. Despite what others have said about Gabepentin I was taking 3600 mg per day and finding relief. I am now only on 1800. I also found a nice muscle relaxer called Zanaflex or Baclofen that work for me. Fibro is definitely a trial and error disease. Although I also have on board Rheumatoid arthritis so some days are suicidal days. I am on so many meds that I can open up my own pharmacy. Keep trying I know you will find relief soon, I hope. If you need to talk further let me know, I find that just venting to someone does a world of good.

The opinions expressed here are the views of the writer and do not necessarily reflect the views and opinions of News-Medical.Net.
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