Deseret News | Reader comments: Fibromyalgia relief

Reader comments
Fibromyalgia relief

Grizzly | 10:37 p.m. March 5, 2009

Bravo for these people and for the researchers who come up with meds that are able to help. Fibromyalgia is real and debilitating, It isn't reserved for older people either. I hope to see more on the study and look forward to real progress in pain management.

Thank You! | 6:47 a.m. March 6, 2009

Thank you, Janis and all of you people out there that show there is no limit.

Other meds? | 7:52 a.m. March 6, 2009

My wife suffers from fibromyalgia and takes Lyrica which has helped quite a bit. She has to take Ultram for the pain as well--which is quite expensive. I am hoping that the new drug may be able to replace the Ultram. How exciting!

Comments continue below

Troy | 8:18 a.m. March 6, 2009

Janis, come rain or snow, you're my hero.

Charisse | 8:29 a.m. March 6, 2009

I am Janis's daughter and I just have to say what an improvement this drug has made in her life. It would break my heart to call her in the morning and just hear how much she was in. She now has more good days than bad and it makes me happy to know she can now do the things she loves to do. I am very excited about this new drug and hope it continues to bring her the relief she so desperately needs. I hope everyone with Fibromyalgia is able to find the relief my mother is so fortunate to have found. I love you mom, and it's great to have YOU back with us!

Reality | 9:07 a.m. March 6, 2009

There is no such thing as Fibromyalgia. Just ask over 84% of medical doctors.

Illinois | 9:30 a.m. March 6, 2009

Dear Reality,

Hope you or a loved one never goes through Fibro, as for the rest of the medical community, They have to get their heads out of the sand to practice good medical treatments.

Re: Reality/Other meds? | 9:39 a.m. March 6, 2009

The "reality" poster is looking for a reaction. Just ignore that post.

To Other meds: your wife is probably taking Ultram ER which is very expensive. She could take tramadol which requires more frequent dosing, but is much more affordable.

Also, what is the relationship between the DesNews and Savella? Savella sure got a lot of shamelss pub.

Lori | 9:43 a.m. March 6, 2009

I'd rather ask the other 16% who probably suffer from it themselves. Remember the mental illness stigma years ago? Now we know it exists. Fibromyalgia is real, it's not all in our heads. I wish it was. Then maybe the rest of my body wouldn't be so miserable.

Anonymous | 9:49 a.m. March 6, 2009

Reality,

You need to get one! Those of us who suffer from this know just how real it is. Just because you can't do a blood test for a disease does not mean that it does not exist. Do some research before you just start spouting off!

Marie | 9:58 a.m. March 6, 2009

My doctor was one of the 84% that didn't believe Fibromyalgia was real and now- after many patients coming to him with pain problems- He has gotten his head out of the sand and now has a assistant that keeps current on Fibromyalgia. I had to beg him for pain relief and now he understands and is very sympathetic.

Phoebe | 10:00 a.m. March 6, 2009

I hope the D News got paid lots of money for this pharmaceutical advertisement.

Jeanine | 10:07 a.m. March 6, 2009

Reality, I'm going to have to differ with you. Fibromyalgia is real and the percentage of medical doctors that agree with you is far fewer then those who do believe in it. I've been a sufferer for over 20 year and am blessed that I don't have the depression that can go along with this. What a relief it was to get a diagnosis.

I'm calling my doctor today to find out about this new drug. Lyrica worked for a short while but I'm willing to give this a try.

Hope!!!

California Mom | 10:18 a.m. March 6, 2009

Fybro is painfull and at time debilitating. I have it in my shoulders and now it has moved into my hips and legs. At times it will sit you down, and even then certain movement can be painfull. Docs do make you feel like an idiot because it is the final diagnosis after so many tests. Can't wait to try something new, would love my energetic life back.

Girls mom | 11:14 a.m. March 6, 2009

Is Fibromyalgia known as Chronic Fatigue as well?

Christy | 11:50 a.m. March 6, 2009

I enjoyed the article. I would like to learn more about the drug and its side effects. Could it take the place of Tramadol, Lyrica, Cymbalta, and Valium? Or would it need to be another drug to add to the list of drugs that help a little? Thanks.

John | 11:52 a.m. March 6, 2009

Fibromyalgia and Chronic Fatigue Syndrome are two separate conditions.

Valerie | 12:14 p.m. March 6, 2009

I am excited about the new drug, but I am concerned about side affects. There seem to be so many with these new drugs. When you hear about a new drug on TV and they spout off all of the side affects it makes you think it would be better to live with the pain than the possible things that could happen to you because of the medication. Does anyone know what the side affects of Savella are?

RE: John | 12:20 p.m. March 6, 2009

WRONG! Chronic Fatiigue can happen WITHOUT the pain and stiffness of Fibromyalgia, but Chronic Fatigue is ALWAYS present w/ Fibromyalgia. The Chronic Fatigue associated w/ Fibro comes from two sources; #1 the muscle tension of Fibro and #2 The sleep disturbances of Fibro. A "normal" non-fibro person's muscles relax to 2% to 4% constriction, but people w/ fibro muscles stay constricted in the 10% +/- range all the time. This constriction drains energy, causes tendons, ligaments and muscles to ache and be "stiff". Repetative actions make firbro sufferers sore much more quickly than non-fibro's. Hugh impact exercise like basketball or racquetball tear muscles. Sleep disturbances are also a fact of lfe for people w/ fibromyalgia. It takes 10 hours per night for me to even begin to cope. DO SOME RESEARCH BRFORE YOU OPEN YOUR MOUTH!

love to janis | 12:59 p.m. March 6, 2009

Many of us who know and love Janis didn't even realize that she was struggling with chronic pain. I'm glad she is able to continue with the life she loves, and lives so well. She has a constant smile on her face! You go, Janis!

RE: RE: John | 1:01 p.m. March 6, 2009

Hey you have some great info there, but did you have to be so hostile when correcting John? Assume that his info is what most of us get from our own doctors, okay? We don't have access to some of the "RESEARCH" to which you refer, and would appreciate any correct info someone such as yourself could offer, but without the attitude. Misinformation can be infuriating, yes! So let's correct it, but not fuel any further incorrect attitudes toward us fibro/CFS sufferers regarding our mental states. Our lives are difficult enough as it is. John needs correct info, not a slap-down.

Savella se's | 4:38 p.m. March 6, 2009

I'm guessing savella's side effects will be similar to cymbalta, or even effexor because they work the same in the body.

Janis | 6:28 p.m. March 6, 2009

The only side effects I have had from Savella is a runny nose and some nausea if the medication is not taken with food (p-nut butter and honey on toast works great for me!).

Janis | 6:37 p.m. March 6, 2009

The only side effects I have had from taking Savella are a runny nose and some nausea if not taken with food (peanut butter and honey on toast works great for me!)

Mary | 7:17 p.m. March 6, 2009

John is correct. Fibromyalgia and Chronic Fatigue are two different conditions. I have fibromyalgia without chronic fatigue, but I have heard that about 85% of people who have fibromyalgia also have chronic fatigue. I have a friend who has chronic fatigue without fibromyalgia. I'm glad to hear that there is a new drug which can be taken for fibromyalgia. Thank you, researchers, for finding new cures. I'm looking forward to trying savella. I hope there will be some answers to how a person can get over fibromyalgia and chronic fatigue syndrome sometime soon.

Sandra | 8:18 p.m. March 6, 2009

I have been involved in a pain medication study for Fibromyalgia as well. The medication Roboxin, was initially prescribed for depression but has been shown to have positive benefits for fibro. sufferers. I know that my pain has been reduced with this medication and no ill side effects. Has anyone else tried this drug? While not currently prescribed as a fibro medication, I hope that it will be soon.

Ky Charm | 10:31 p.m. March 6, 2009

I`ve been very ill for years with Fibro.....and what follow`s.I just stopped taking Cymbalta and Lyrica because I gained 40 lbs and now on high blood pressure meds and arthritis.I`m going to try savella and I pray it works.If this one doesn`t I give.I get weaker by they day.
Happy it`s helped all of you.Best Wish`s!

J.C. | 12:17 a.m. March 7, 2009

Lyrica can cause weight gain but Cymbalta generally helps you to maintain or even lose some weight. Savella and Cymbalta both work on the same brain chemicals. I've found that Cymbalta has really helped me both in mood and pain reduction. Thanks, Deseret News, for keeping us updated on recent medical news and the success Janis has had. YOU GO GIRL!!

kitchy | 7:21 a.m. March 7, 2009

I am pretty sure I have fibro but can't get my doctor to agree. He wants to continue with expensive and dangerous tests that I cannot afford and refuses to even consider fibro until I follow his protocol. Every test he has done so far has been negative. Now he wants me to have another heart stress test (done this before) and I am simply not up to it physically or financially. Why must I be broken before I am treated to see if this works for me. I'm not sure this is the right diagnosis but when it isn't even considered I feel that no one cares. It is hard to be in pain all the time and fatigued to the point that my life is impacted negatively. Who can recommend a doctor with an open mind?

healthy again | 11:14 a.m. March 7, 2009

My pain & fatigue are 90% gone after 2 months on a nutritional supplement that increases your body's production of glutathione. MAXGXL has given me my life back! The drugs being prescribed for fibromyalgia are treating the symptoms not healing the body. For true relief, you must give the body what it needs to heal itself and MAXGXL does that. It was created by Dr Keller who spent more than a decade developing this for his own patients with fibromyalgia, CFS, HIV, and other autoimmune system disorders, as well as those with cancer. He found that it works to improve everyone's health and slows the aging process by helping your body help itself. Dr Keller is my hero, not the drug companies. If you want to get well, google maxgxl.

J FLOWERS | 1:33 p.m. March 7, 2009

The thing that bothers me the most about my fibromyalga is the fatigue. Once a high energy person i am now barely able to make it thru the day. Does this new drug help with the fatugue?

Rayda | 1:56 p.m. March 7, 2009

When I developed fibro after my daughter was born my doc's first reaction was to tell me (at 36) that "as we get older we get little aches and pains". It wasn't until I got teary eyed and angry with him that he finally offered the fibro diagnosis and then he told me that it wasn't a "real" condition. Believe me, this is as real as it gets! There are days when I cannot move at all for hours on end. I've had three sleep studies done and I'm convinced diagnostics are a crock. Nobody really knows what they're doing and I no longer trust the medical profession. Cymbalta has nasty side-effects for me so I imagine this drug will, too.

mystictravel | 12:51 p.m. March 9, 2009

I have fibro and am currently on Lyrica which seems to be helping. Every drug affects people differently. There are a couple of 'posters' that need a reality check/wake-up call or to just not post. I couldn't care what 84%, 94% or 100% of the doctors think... and to the one who thinks that this is just an advertisement for a drug, I beg to differ. I am thankful for articles like this that increase awareness about the disease and treatment. It is too bad that there are those who can believe in something if it can't be measured.

inpain | 3:12 p.m. March 9, 2009

Thank you Janis. I have tried a lot of different medications. They work for about a month then they quit working. I hope this helps me. One problem with fibromyalgia is that people can't see on the outside how we feel on the inside. Don't judge anyone. I wish it was all in my head but I know something is wrong when every part of my body hurts for days and then one day I wake up and feel good, but it never lasts. I am willing to try this new drug if it can take away the pain.

wellwisher | 9:23 a.m. March 10, 2009

I have been suffering with Fibro for 4 years now but refused any kind of drugs that simply treat the symptoms - rather I have been searching for the root cause - information from Dr. Lowe's site linking hypothyroidism to fibro seems very plausible to me - and I am going to research this option more and seek out a endocrinologist willing to help. Any comments on this anyone?

mystictravel | 2:19 p.m. March 10, 2009

I don't understand people who refuse to take a medication that will improve their quality of life and instead choose to be in pain. I agree, that finding the root cause is important but in the meantime, I suggest medication.

inbodynotmind | 10:33 a.m. March 11, 2009

Sceptics lets put it this way, if my suffering isnt Fibro, then what is it? Fatigue and pain, that moves around the body, but is felt mostly in the head, neck, shoulders and arms. I sleep heavily, but not at all refreshed. Try waking up, feeling like you've been run over by a truck. It takes nearly all day to get going, with a strong desire to sleep all the time, which isnt helped by the side effects of painkillers.It is a vicious circle.I am someone who loves life, and has many interests. All i want to do, is be able to get on with them. I have no reason to "make it up", and although i dont consider myself as depressed, being in constant pain can be depressing! The stiffness, the swelling, the weight gain (i am on lyrica), the effects on my memory etc etc. sometimes i'm okish, then there are the debilitating flare up's. Too much activity, or too little/RSI eg sitting at computer can cause it, or stress, hormonal changes, can bring on flare up's. Also, sensitivity to temperature, especially the heat etc etc. Help & understanding needed!

Phyllis | 7:39 a.m. May 6, 2009

I was on Cybalta for several years and initially it helped my FIBRO
However over time, it ceased to be effective. I had some withdrawal sympoms from Cybalta and even though I did it gradually it was "quite an experience" I was put on Lyrica and while it helped a bit, I gained 8 lbs in 6 weeks so I discontinued it. I was without meds for about a month and really felt the Fibro. Today I am on Savella and have been on it for only a week and a half. I am up to 50 mgs 2x daily and today is the first day I feel no fibro pain. I was not anxious to go on another ssri but it seems this might be working. Really too soon to know. I will keep you posted.

Carolina | 4:22 p.m. Oct. 13, 2009

I have not been diagnosed with Fibro. formally, but it's a provisional diagnosis. I have been taking Savella for last five days and have noticed a big increase in energy and lessening of pain. I also have a runny nose and occasional nausea if I don't take it with food, just like Janis has reported.

speaking of Chronic Fatigue... | 4:47 p.m. Oct. 13, 2009

there was an article in the NYTimes yesterday about research that Chronic Fatigue may be caused by a virus. It was a very interesting article.

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7 photos

Kristin Murphy, Deseret News

Janis Nimori finishes her scuba dive in Udy Springs in Garland, Box Elder County, on Feb. 16. Nimori has been helped by a new drug for fibromyalgia. She now is able to work as a scuba dive instructor. Before the drug, she was basically homebound.

Gallery (7 photos)