Rose in BC Posted February 15, 2014 Share Posted February 15, 2014 I have fibromyalgia. I've had it for a few years but in the past couple months the pain I suffer seems to be increasing. I take amitriptyline, 20 mg, at night to help me sleep. That's all I take for the fibro. I'm curious what others do. I try to walk every day, which isn't easy in winter. But some days its so painful. I see lyrica is sometimes prescribed. Anyone have success with this drug? Quote Link to comment Share on other sites More sharing options...
Pamela H in Texas Posted February 15, 2014 Share Posted February 15, 2014 :popcorn: Quote Link to comment Share on other sites More sharing options...
LibraryLover Posted February 15, 2014 Share Posted February 15, 2014 Does anyone know if Curcumin has any success in treating fibromyalgia.? Any experiences? I don;t have it, but a friend does and they were going to try tumeric/curcumin. Rose, my friend says epsom salt baths can be helpful. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 15, 2014 Share Posted February 15, 2014 I'm allergic to amitriptyline. I take curcumin. It helps with inflammation. I take gabapentin which is a precursor to Lyrica. It helps me with restless leg syndrome but nothing else. I take a whole boatload of supplements - magnesium, adrenal supplement, melatonin (at night for sleep), lots of probiotics (which helps with some stuff like brain fog). Quote Link to comment Share on other sites More sharing options...
rmtzc2009 Posted February 15, 2014 Share Posted February 15, 2014 I have Fibromyalgia. I tried Lyrica & didn't get any relief so after a year went off it. I'm on 25 mg of Amitriptyline. Magnasorb (magnesium) & I've tried turmeric without noticeable improvement. I wish I had good options to suggest! Quote Link to comment Share on other sites More sharing options...
stephanier.1765 Posted February 15, 2014 Share Posted February 15, 2014 Lyrica works wonders on me. I could not survive without it. I also take Ultram with tylenol on a regular basis to help keep things under control. Quote Link to comment Share on other sites More sharing options...
Peaceful Isle Posted February 16, 2014 Share Posted February 16, 2014 Lyrica did not work for me. :( try it, though. You never know till you do. :) it may work wonders for you. I am in constant pain from my fibromyalgia. I also have chronic fatigue and thyroid issues. What has worked for me has been a few different things. I take Wellbutrin xl for pain and energy. I also take Alive vitamin, melatonin at night, and have started taking primrose oil as well. I have also gone gluten free. The reason was that my mouth swells every time I eat it. :/ When I stopped, my stomach issues went completely away, and my pain decreased as well. Just an added bonus. Another thing that seems to help the pain, is pacing myself. If I'm really busy for a few days, I make sure I have a few days to completely rest. If I don't do that, my pain is unbelievably bad. Whatever you do, make sure to take care of yourself. Get enough rest and drink plenty of water. Hugs to you as you figure out what is best, and what will work for your pain. Having fibromyalgia can be a very, painful lonely condition. Try to reach out to others you trust for help during the bad days. Quote Link to comment Share on other sites More sharing options...
BlueTaelon Posted February 16, 2014 Share Posted February 16, 2014 I opted to take the non drug route and I'm totally pain free most days, still working on the brain fog but its getting better since starting Paleo. Before starting I was in severe body wide pain all the time and doing a load of laundry and loading the dishwasher the same day was a major achievement. I refused to go the drug route after seeing friends become addicted to various painkillers one of which ultimately died as a result when she had a bad reaction to the drugs. I went on the vitamin treatment for Pyroluria along with adding things like Malic, D, E, Manganese, Magnesium, ect. Quote Link to comment Share on other sites More sharing options...
TeacherZee Posted February 16, 2014 Share Posted February 16, 2014 Excedrin and nimpaxon, vitamin D and omega-3. But right now I am in a great deal of pain and my doctor and I are talking about what we might do next. Quote Link to comment Share on other sites More sharing options...
Lanny Posted February 16, 2014 Share Posted February 16, 2014 Rose: The woman who sings with my favorite singer/band had *horrible* problems with this, 3 or 4 years ago. It was so bad that she did not go with the band, when they toured the world, for about 2 years. She is very active with them again and she is not complaining. I'm not sure what she did that helped her, but I am going to send her an email now and ask her what she would recommend to you. Her reply to me will be in Spanish, but I will relay the information to you. She is one of the sweetest women on the planet and everyone who has ever met her loves her and it was sad when she was suffering so much. Hang in there! Quote Link to comment Share on other sites More sharing options...
Joules Posted February 16, 2014 Share Posted February 16, 2014 I've suffered for a dozen years with fibro and several other autoimmunes. For a long time, I've taken cyclobenzaprine at night to help me sleep. It's better than without, but not much, but being awake all night stinks. Over the years, I've tried most everything natural, prescription and exercise. I wanted to share that I did sort of find a miracle answer that might help someone else, but isn't helping me much at the moment: I noticed that the fibro eased some when I was sick. I figured it just gave my immune system something to do, but then it occured to me it might be the antibiotic. So the primary care offered to give me a trial of doxycyline (100mg 2x a day) and things almost completely cleared up. Showers didn't hurt; people could hug me. I got SO much done in that six weeks. It was the longest I'd been pain free in decade, but the doc wasn't comfortable with it long term, so he went to 100 mg a day and the pain started coming back and then the 100 mg extended release, but I guess it wasn't over the threshold, so we stopped it. I've developed some other problems and the cost of doxy has gone up to hundreds a month, so I haven't pursued it, but it makes me somewhat hopeful for the future. And I thought maybe it would help someone else. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 16, 2014 Share Posted February 16, 2014 Joules - doxycyline is one of the medicines used to treat Lyme disease (among other things). Perhaps you might seek out a Lyme literate doctor? This is sort of depressing but I've had fibro for over 20 years. I've had some patches of "remission" and I've had very bad patches. Mostly bad patches, to be honest. I'm thinking that my current acute problems are all tied into this somehow. The problem is "fibro" is that it is a syndrome - a collection of symptoms - and I think can be attributed to some different things in different people. Quote Link to comment Share on other sites More sharing options...
Hedgehog Posted February 16, 2014 Share Posted February 16, 2014 I use a combination of meds and natural remedies for my fibro. I take Lyrica (pregabalin), and that helps with my pain and brain fog (in addition to anxiety); I also take omega 3-6-9 and Vitamin D3 daily, and Ashwagandha if I wake up in a lot of pain. If I'm still in pain after all that, I'll take ibuprofen, Diclofenac or naproxen (anti-inflammatories of increasingly strength). That combination has taken 5 years or so to refine. Quote Link to comment Share on other sites More sharing options...
Carrie12345 Posted February 16, 2014 Share Posted February 16, 2014 I don't take anything, and my doctor is completely unhelpful. (My options are severely limited here.) Fortunately, mine can definitely be considered mild. My flairs are few and far between and don't tend to last more than 2 or 3 days when they do hit. Since taking up regular exercise and nearly eliminating food fillers/preservatives/additives/etc., they've been even fewer and milder, but that could just be a coincidence. It all seems so random to me. Quote Link to comment Share on other sites More sharing options...
Joules Posted February 16, 2014 Share Posted February 16, 2014 Joules - doxycyline is one of the medicines used to treat Lyme disease (among other things). Perhaps you might seek out a Lyme literate doctor? BTDT - I don't test positive for Lyme, therefore I can't possibly have or have had Lyme. Ime, Lyme doctors are rather inflexible. Quote Link to comment Share on other sites More sharing options...
Kerileanne99 Posted February 16, 2014 Share Posted February 16, 2014 I have a slightly different story, but I have actually gotten a great deal of relief:) However, it is probably only for very extreme cases, or situations where the Fibro is secondary. I have an intrathecal baclofen/pain pump. This means the pump/reservoir is actually surgically imbedded in my abdomen with a catheter that feeds meds directly into my spinal column. It has absolutely changed my life. That being said, I am in a wheelchair after an accident in the Army. I am very active, not paralyzed (except 2 toes!) and we even rock climb. But after dislocation of both hips, repeated surgeries, etc. it was discovered that I have autoimmune issues which were making recovery from the original injury virtually impossible. I was in a tremendous amount of pain from that, leg spasms, and back pain...but I also was dealing with Fibro throughout my body that totally put me over the top. After literally years of treatments, oral narcotics that just wrecked my stomach, and even electrical stimulation, I ultimately chose to try the pump thinking it would help with the hip/back pain and spasms. And it did, tremendously. But I had no idea that it would also relegate my Fibro issues to merely discomfort on my bad days! Truly a miraculous difference. It allows me to play with my kiddo, be counted on more (since you never know with Fibro whether tomorrow will be a good day or a rough one). And yes, it means narcotics in the pump along with the muscle relaxant...but micrograms versus tend to hundreds of milligrams. And no feeling high or sleepy, which I LOATHE. I now get the pump refilled via syringe every 3 months. It will have to be replaced about every 8 years. That is a lot of great days. I still occasionally need Diclofenac or so, an occasional oral narcotic if I have a partial dislocation...but I have a life now. My pain management doctor told me there is some use of the intrathecal pumps for Fibro alone, so if you have tried all manner of things and are still really struggling after years? At least discuss the possibility... Quote Link to comment Share on other sites More sharing options...
Rose in BC Posted February 16, 2014 Author Share Posted February 16, 2014 Rose: The woman who sings with my favorite singer/band had *horrible* problems with this, 3 or 4 years ago. It was so bad that she did not go with the band, when they toured the world, for about 2 years. She is very active with them again and she is not complaining. I'm not sure what she did that helped her, but I am going to send her an email now and ask her what she would recommend to you. Her reply to me will be in Spanish, but I will relay the information to you. She is one of the sweetest women on the planet and everyone who has ever met her loves her and it was sad when she was suffering so much. Hang in there! That would be awesome. Thanks. Quote Link to comment Share on other sites More sharing options...
Rose in BC Posted February 16, 2014 Author Share Posted February 16, 2014 It's interesting to read people's experiences. It's true, Jean, the problem with fibro is it's so different for everyone. Pain is number one problem. I have a new area of pain now (past month). My teeth hurt. Not toothache pain, just all my teeth ache. (I do have TMJ and it's different than that. I can't even stretch properly now because getting down or up from floor is so painful on my arms (and legs). I walk most days which helps I'm sure but by the time I reach my house my legs almost feel like buckling under pain. It's so discouraging. Thanks for all your responses. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 16, 2014 Share Posted February 16, 2014 Rose, you might want to be checked for a hidden sinus infection. It is actually quite common with fibro sufferers and teeth pain is a symptom. Quote Link to comment Share on other sites More sharing options...
Rose in BC Posted February 16, 2014 Author Share Posted February 16, 2014 Rose, you might want to be checked for a hidden sinus infection. It is actually quite common with fibro sufferers and teeth pain is a symptom. Hmm, interesting. I do often have sinus issues...usually headache/facial pain accompanies it. I think I may see dr next week. Thanks for idea. Quote Link to comment Share on other sites More sharing options...
Lanny Posted February 16, 2014 Share Posted February 16, 2014 That would be awesome. Thanks. I sent her an email this morning. Hopefully she will read her email... If I don't hear from her, in a couple of days, I will send her a message on Facebook. I hope to be able to give you some information about what worked for her, ASAP. Quote Link to comment Share on other sites More sharing options...
Spryte Posted February 16, 2014 Share Posted February 16, 2014 Lyrica didn't work for me. Sleep aids, dietary changes, supplements all help to a degree. I take turmeric/curcumen (why can't I spell that today?) in the form of Bioinflammation Plus, which I order from Amazon - my doc recommended it. On bad days, a licorice tincture helps a bit, as do Epsom Salt bath - those are my at home, OTC remedies. I also have an intense regimen of supplements, which my doc tweaks every 6 - 8 weeks. All of it helps, to a degree. Nothing has been the magic bullet. Fibromyalgia, as Jean pointed out, is a syndrome, and as such is essentially a collection of symptoms. Finding the cause of those symptoms is the most effective treatment, though not always possible. For me, once we found the cause(s) and treated it (them), my symptoms went from severely disabling to ... having some truly great days. I still have bad days, but am much better, considering. I'm not sure I'll ever be in the shape I was prior to all this, but I am grateful for where I am, if that makes sense. Find a great doc, one that will listen. If you don't have a great doc now, keep looking. Eventually you will find one that will start to put the pieces together for you, and not look at each individual body system as a compartmentalized box but the whole body. BTDT - I don't test positive for Lyme, therefore I can't possibly have or have had Lyme. Ime, Lyme doctors are rather inflexible. I don't think you've seen an LLMD yet, it sounds like maybe you've seen an infectious disease doc or a neuro who follows IDSA protocol for treating Lyme. A truly Lyme Literate Doc would tell you that Lyme is a clinical diagnosis, and cite the poor testing out there, and the many false negatives, and explain why there are so many false negatives. If you wanted to pursue that avenue, you could consider finding a LLMD that is a member of ILADS. If you want to just watch a documentary on it, to get a feel for why some docs are inflexible about it, and some are pioneers, and why there are so many false negatives - watch Under Our Skin, a documentary on Netflix. My LLMD saved my life. Literally. :) Quote Link to comment Share on other sites More sharing options...
Only me Posted February 17, 2014 Share Posted February 17, 2014 Unfortunately I haven't been able to find a lot that helps. I'm still not convinced that I don't have Lupus and I also feel that my severe low back pain is unrelated to the fibro. I've tried Lyrica, gabapentin, a ton of prescription antiinflamatory meds and none helped and all caused side effects. I take a muscle relaxer nightly as well as prescription pain pills and magnesium and malic acid. I hope you find something that helps. I know how hard it can be. These last few weeks have been horrible for me. My pain never goes away but every once in awhile I have a bad flare where my joints hurt so much that I can barely walk. I'm actually in the process of trying to find a new doc since I really feel I have more than fibro going on. I have heard good things from others about curamin but it doesn't help me. Quote Link to comment Share on other sites More sharing options...
Joules Posted February 17, 2014 Share Posted February 17, 2014 I don't think you've seen an LLMD yet, it sounds like maybe you've seen an infectious disease doc or a neuro who follows IDSA protocol for treating Lyme. A truly Lyme Literate Doc would tell you that Lyme is a clinical diagnosis, and cite the poor testing out there, and the many false negatives, and explain why there are so many false negatives. If you wanted to pursue that avenue, you could consider finding a LLMD that is a member of ILADS. If you want to just watch a documentary on it, to get a feel for why some docs are inflexible about it, and some are pioneers, and why there are so many false negatives - watch Under Our Skin, a documentary on Netflix. My LLMD saved my life. Literally. :) Yes, I didn't know there was a difference, I saw Lyme specialists. I thought it was a phrase not a actual title. I'll look into it. Quote Link to comment Share on other sites More sharing options...
Spryte Posted February 17, 2014 Share Posted February 17, 2014 Yes, I didn't know there was a difference, I saw Lyme specialists. I thought it was a phrase not a actual title. I'll look into it. If you need help, pm me and I can point you to some groups that can help you find one in your area. The results you've had already with antibiotics are significant, so it might well be worth investigating further. Quote Link to comment Share on other sites More sharing options...
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