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From Our Readers: Comments & Suggestions – 7/8/2015

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Abuse and Fibromyalgia

Re: Fibromyalgia Has Central Nervous System Origins

Yes, from what I have heard there are a disproportionate number of people with Fibro who were abused. I also think chronic stress in your job or marriage is a contributing factor as well. The best thing I ever did for myself is start taking Ribose twice a day. It has taken a few months, and some adjusting of prescription meds, but I am nearly pain free and on no T3’s, Tramacet/Tramadol etc; not even any Aleve or extra strength Tylenol. I am off Amitryptilene and doubled Cymbalta with Trazadone (200mg) for sleep. No craving for sweets, muscle spasms are less, and I no longer feel like I’m slogging through mud everyday. I am 62 and was diagnosed at 36. I’ve been on disability for 11 years. – DougalsMom

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Good List But…

Re: Survey: What Triggered Your Illness?

You seem to have missed a very important possible trigger of fibromyalgia. FM is primarily a hypersensitivity illness and it is known that many people who get FM had a history of recurrent pain. This is often explained by the “kindling” hypothesis, in that pain which is recurrent, such as from duodenal ulcer or gastritis, or from IBD, or arthropathy can trigger a hypersensitivity to pain and idiopathic widespread pain syndrome (fibromyalgia). Some even hypothesize that “emotional pain” which is chronic or recurrent is little different from anatomically induced pain and can similarly trigger “kindled” pain, ie. FM.

Of course, such “triggers” as you have listed cannot act without a genetic predisposition otherwise more people would have FM and the relationship between the trigger event/circumstances would be an obvious cause.

It is my experience in working with patients with FM for over 10 years that a history of recurrent pain has to be considered as a possible trigger along with all the other possible triggers which you have listed. – IanH

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Successfully Weaning Off of Cymbalta

Re: Cymbalta Warning: Discontinuing May Result in Severe Withdrawal Symptoms

I have been on Cymbalta for over 14 years at 120 mg It took me over a year to ween down to 90 very smoothly. But when I reached 60 mg. All hell broke loose. With all the hellish symptoms, massive beaches, palpations, deep depression, dizziness, confusion, agitation, nervousness. throwing up, fever, and then to top it all off I developed persistent arousal disorder. I couldn’t take it. I wanted to kill myself. There was no where to turn. I couldn’t go to the ER. There was nothing they could do for me. I called my doctor whom I pay 400.00 dollars a visit. I told her I couldn’t take it. I was in deep in a hellish pit that I want to kill myself. She gave me no answer …. I told her to call me in a prescription for 10 mg of Paxil. cause I had taken that years ago and had no problem with it. She did.. after about 4 days I started to feel some of the symptoms dying down. After being on the Paxil for 3 weeks most of all the symptoms are gone except my depression. I am now on 30 mg . I am going to start weening myself off of the Paxil in a month or so. I figured it would be easier with the Paxil because it comes in a tablet form and I get cut them in little pieces until I am weened off. It’s a try. I hope maybe this can help someone who is experiencing being in torture. This might be way out. I will keep everyone posted. – chrismay

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I was on 60 mg of Cymbalta for only 6 months….6 very long months of weight gaining, sweating, memory fog and severe mood swings. I too have had several fusions with allografting from my pelvic, front and back. I deal with nerve damage as a result of two ruptured discs in my neck and one in my lower back. My family Dr. felt I was starting to show signs of depression from dealing with the pain and daily issues associated with nerve damage; my pain Dr. agreed and I was put on Cymbalta. I had taken Lyrica almost two years earlier and I made the horrible mistake of weaning myself off of it way too fast and probably should have been hospitalized. Lyrica is twice as bad as Cymbalta – whatever you do NEVER take it. It is 100 times worse than Cymbalta!!! I was assured that this would not happen again if I decided to not continue taking the Cymbalta. They of course were very wrong. I was super lucky, my family Dr. believed me and did his research. He had me stop taking the Cymbalta and immediately replace it with 10 mg’s of Prozac, yes, Prozac for seven days only. It took the edge off, the withdrawal symptoms were very mild and by the 7th day I was well on my way being over the hard part. It might not work for everyone, the Prozac was not addictive for me and I believe that it had a lot to do with the fact that I wasn’t really depressed in a chemical way just a little down and frustrated on learning how to deal with chronic pain. Hope this helps. – mondragon04

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No More Drugs for Me!

Re: The Future Fibromyalgia Drugs? Pharmaceutical Source Predicts Four Drug Approvals in Coming Years

In light of “promising” new drugs for Fibromyalgia that are coming up, I refuse to give any of them a try. I’ve found that alternative non-drug options have worked well for me. But I also had to research which specific curcumin, magnesium (malate), MSM, and Instaflex had the most viability for my pain, spasms and other Fibro-related issues.

The only prescription medication I am currently on that is Not Related to my Fibro is my antidepressant, Paxil. I’ve been on this long before I was diagnosed with Fibro. I also take Melatonin at night to help me go to sleep, although I do tend to wake up in the middle of the night and have difficulty going back to sleep. This could have something to do with simply getting older. I am 57yo.

Because of taking alternative supplements, such as those listed above, I am practically pain-free. I still do have my bad days no matter how hard I try to avoid them. They’re going to happen whether I like it or not. But I am able to work (I’m a Pharmacy Technician – go figure) and really enjoy my job. Some days are harder than others. As a back up, I take Bayer Back and Body, either brand name or generic from any drugstore, Walmart or Target. And I also pace myself at home when doing housework or gardening. Staying active is extremely important. I need to incorporate those 10,000 steps into my daily routine to drop between 5-10lbs. The “extra” pounds come from the Paxil.

And that’s the other reason why I want nothing to do with drugs. Most are notorious for causing weight gain, which is the crux to more problematic issues regarding Fibromyalgia. In my humble opinion, taking prescription drugs exacerbates the symptoms of Fibro, as well as adding the notorious side effects from the medication. It is a very vicious cycle. Just some thoughts…. – JoGreig58

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Fibromyalgia and Napping

Re: Daytime Napping Linked to Increased Fibromyalgia Symptom Severity

I am really surprised by these results. Personally I have found trying to get 8 hours at night is impossible, therefore I’ve broken my day into 2. I get up around 5 a.m., up for 8 hrs., have another 2-3 hour nap in the aft, then up and able to make supper and spend the evening with hubby. I know it is time to lay down when I start seeing spots, which means I’ll have a migraine if I don’t rest. I really think more research needs to be done in this and ALL the difficulties we contend with. – OnthisRock

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I have had FM since the 1970’s when it was called Fibrositis. Over the years, 40 plus, I have done it all. Nap, don’t nap, many different med, etc., etc. I finally learned to listen to my body and not everyone else. I still read and look for hope but truly I haven’t seen anything new. Flares are just that, flares and not resting or sleeping whenever you can is, for me a big mistake ! That is when I get even worse. I have found gentle yoga, walking a short time and then resting is very helpful. If I fall asleep so be it. They naps never last more than 45 mins. anyway. The main thing is to pace yourself and like a lot of us tend to do, NOT do as much as we can on the really good days trying to fit it all in. God bless all of you with FM and those of you trying to find answers. We do appreciate it. – Bettyloufae

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Namenda Study

Re: Namenda (memantine): A Potential NEW Treatment for Fibromyalgia

This article is the first to truly offer me hope, in a way that I can understand. How can we raise funds to continue research, and thank you so much for doing the study and printing the article!!! – remiaz12

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