From Our Readers: Comments & Suggestions – 3/11/2014

Fibromyalgia Under-Treated

Re: VIDEO: How Fibromyalgia Is Often Under-Treated

So true – what a great video- I was told my plantar fasciitis was “just fibro” but I wasn’t, but years later it was too late and now I have chronic PF, Achilles tendinitis and can barely walk now. I also remember when I had diarrhea for 2- 3 months and one doctor said it was just my fibro, but luckily I went to another and actually I had a hookworm parasite and when treated with medication, it resolved. So always with a new symptom, never assume it is just FM and if a doctor says that, go to another. – roge


Vitamin D3 Helps Pain and Energy

Re: Study Finds Vitamin D3 Helps with Pain in Fibromyalgia

I have been taking D3 for about 12mths now. I have fibromyalgia and ill defined connective tissue disease. I noticed an immediate increase in energy levels on the vitamin when I started taking 2000iu a day. I do believe my pain levels are somewhat reduced also.

I recommend giving D3 a try. It certainly can’t hurt. If it makes no difference you can simply stop. I am tempted to try higher doses now that I have read what the maximum safe levels are. – clikchic


To Be or Not To Be Gluten Free

Re: How Gluten Issues Are Connected to Fibromyalgia

I think going gluten free is just the current buzzword being pushed by the current culture. Gluten free products have no fiber in them, they are expensive and taste awful. I have had tests done by both my gastro doc and my naturopath and have absolutely nothing indicating a gluten sensitivity.

I eat Ezekiel bread and muffins and I buy organic whole wheat non gmo pasta. I need the wheat to keep my bowels working properly. I think the problem with the wheat is that all the wheat in this country is genetically modified and that is where the problem lies so I buy only non gmo wheat. I started my new healthy eating program after being diagnosed with multiple myeloma and am down to the weight I was when I graduated in 1967, and that is with my wheat! – ohiosue

Having been diagnosed by my Doctor in 2005 with FM, and told there was no cure, I spent years trying to fix it. Initially I used non-dairy products like soya milk exclusively together with bread home-made with Spelt flour rather than wheat. That diet helped a bit but I still had a fair bit of pain.

Then I read that foods low in Oxalate had been tried by a GP with FM so bad she had to give up work. And, guess what, Soya is high in Oxalates. I moved to avoid high and medium oxalate content foods about 2 years ago and the difference in only two days was astonishing. I am now about 80 – 90% pain free.

I also take Vitamins and Minerals daily which seems to help (and also prevents me getting colds) and consider myself pretty healthy these days. I don’t have my own health website. I don’t post blogs. I just want other people to know that there might be a ray of hope by trying these things. It may not work for everyone, but it works for me, and I am very grateful to the other people who take time to write up their experiences. It only takes one good article, in my case in the Daily Mail (UK) to find something useful. – andrewclark55


Debate Over Opioids for Fibromyalgia Rages On

Re: Long-Term Evaluation of Opioid Treatment in Fibromyalgia

I just read every single entry – all of which said the same thing I did (except one possibly). And I know (through support groups etc.) that there are many many people with FMS who have exactly the same experience – they are (were before becoming severely ill) smart, motivated, generous, “leave the world better than you found it” kind of people. They tried everything – all modalities – like I did – and although some things do help some symptoms – NOTHING reduced the severe disabling pain enough to make life livable. So what’s with this study? I also KNOW what the political environment is right now – how flat out hostile and war-like it is about using narcotic pain medications – REGARDLESS of how well it works or what it does for a person’s quality of life. Power is being taken from the doctors to treat their patients, they are being threatened and harassed. It is unbelievable. Now I take a LOT of high quality bioavailable supplements, I am trying my best to do things like gentle exercise in warm water, massage, using herbals etc. I would LOVE to be able to replace narcotics with these things – but it just hasn’t happened yet. And those other medications that are supposed to be so wonderful – cymbalta, Lyrica – THEY DO HAVE HORRIBLE and scary “SIDE-EFFECTS” AND I went through SEVERE withdrawal when I did titrate off of them – so as far as I am concerned the lies that are flying around about treatments for pain are many and supported by lots of money and powerful companies/agencies/politics. I would LOVE to see a study done (and funded by) a group that is totally devoted to the humane treatment of those people in severe/disabling chronic pain – the ones who lost their jobs and most everything that brings them any quality of life DUE TO PAIN. Maybe the study was done with just people with mild symptoms – I don’t know – all I know is it would really be great to see some TRUTH on this site – reality based. – AprilDawn

These studies are hurtful to those of us who do best on Opiate pain relievers. It will make it harder for doctors to justify prescribing pain medicine for us. I cannot take Tramadol (allergy and seizure risk) and I am functioning much better on Narcotic painkillers than the other options mentioned. Someone forgot to tell my body the results of this study! – lorreann

It seems to me that according to this study, Tramadol is a magic bullet; so much so, that I believe the study was done by the manufacturer of Tramadol. Granted, many people respond to different medications in different ways but this study sounds so one-sided that I can hardly believe what I am reading. I am almost 64 and have had fibro since childhood. I have tried every treatment known to medical science over the years and NOTHING has given me the relief I get from opioids. I am a poor metabolizer of opioids due to a genetic defect so I have been on an “ultra high-dose opioid treatment” for over 3 and a half years. My quality of life is better over the last 3 and a half years than it was when I was 20. “Prohealth” should be ashamed of putting this bogus study out. My experience seems similar to most of the other commenters. Tramadol works as well as a sugar pill as far as my pain goes. I might as well use homeopathy silliness as that works like Tramadol for me. Of course, the container for the diluted solution would have to be larger than our planet to hold the sugar pill. Opioids have been FAR, FAR superior than ANY other treatment! – LouisVA

This study is so detrimental to patients living with intolerable and unbearable pain. Seriously ProHealth shame on you. Who funded this flawed study? I normally post high star ratings to your articles for awareness. This is bs! Pain relief provides a better quality of life PERIOD! It is so hard to get an empathetic doctor or pharmacist in So FL where the DEA has diminished supplies available to chronic pain barely functioning patients and you publish this….. Seriously Pro Health what are you trying to peddle that is better than oxycodone? Tramadol, cymbalta, Lyrica, My Dr refused to give me Lyrica due to the horrible side effects. I am grateful I got myself off cymbalta. Horrible withdrawals. Had to use lexapro for a short time to stop the electric brain zaps. Treat the pain, prevent suicides and go back to advocating for the suffering patient. Who funded this ridiculous study? Patients are already treated with prejudices. Our advocates don’t need to make treatment harder but more accessible. Please give full access to this study, not abstract. You can’t compare the relief from oxycodone in the same sentence with tramadol. Please think of consequences before you publish bs like this. – gbettor

Editor’s comment: This study understandably generated many passionate responses from FM patients. A few expressed disappointment that ProHealth would post such a study, so I would like to explain why we did. ProHealth tries to make as much research related to FM and ME/CFS available to you as possible. We may not always like or agree with the authors’ conclusions but we believe patients should be aware of everything that is happening in the area of research – both positive and negative. In the case of a study like this, it is particularly important for patients to know what research their doctors may be seeing because it could affect future treatment options. Right now we only have access to the abstract of this study but we are trying to obtain a copy of the full text. If and when we are able to read the entire study article, we will give you a more complete report and attempt to answer your questions.

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