Anyone with Fibromyalgia?

12 years ago

A friend of mine has it (the lady whose uncle's funeral I attended in TO a year ago July when the rad on my car blew, resulting in it being towed home).

There was a program that dealt substantially with it on CBC Radio One today - maybe a repeat of an earlier broadcast?

It's moderated by an Emergency Room doctor, and they have discussed choosing to end one's life by choice, recently and a number of other interesting topics.

If you're Canadian or, near the border, can catch our national broadcaster, CBC Radio One, you can listen to it - 11:30 A.M. Mondays, and at another hour, I think, but don't remember when ... or on Sirius Satellite 159.

Or I think that it may be available at www.cbc.ca/wcba (for "White Coat - Black Art", the name of the program).

I find it not only offers some useful information, but he does it in a rather a humourous fashion, usually - so I find it worthwhile.

I plan to call her this evening to tell her about it. She went looking for a report made about a junior mining company that interests her which was mentioned there a few days ago ... and found that one.

ole joyful

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Comments (10)

alisande
12 years ago
I'm not in Canada, but I'm glad it's being discussed.
joyfulguy
Original Author
12 years ago
A lady who'd kept quiet about it for a long time, but decided to "go public" a while ago was part of it, and it took over 15 min. of a half hour program.

Many doctors find it inconvenient ... and sometimes question whether sufferers (mostly? all? women) are telling the truth ... sometimes hit them where it hurts to see whether their hurt is real (and that patient ended up on the floor).

My friend is 50ish (about the age of my son).

ole joyful
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I'm not really familiar with the empirical evidence on this issue. But some research has been done that suggests it may be a factor. It is not clear if this gets to the root cause or merely treats some of the symptoms. "Preliminary studies suggest that the synthetic cannabinoid nabilone might be an effective therapy in patients with fibromyalgia." from Are cannabinoids a new treatment option for pain in patients with fibromyalgia? "Fibromyalgia is now conceived as a central sensitization state with secondary hyperalgesia. Cannabinoids have similarly demonstrated the ability to block spinal, peripheral and gastrointestinal mechanisms that promote pain in headache, fibromyalgia, IBS and related disorders." in Clinical endocannabinoid deficiency (CECD): can this concept explain therapeutic benefits of cannabis in migraine, fibromyalgia, irritable bowel syndrome and other treatment-resistant conditions? "A randomized, double-blind, placebo-controlled trial was conducted to determine the benefit of nabilone in pain management and quality of life improvement in 40 patients with fibromyalgia...this is the first randomized, controlled trial to assess the benefit of nabilone, a synthetic cannabinoid, on pain reduction and quality of life improvement in patients with fibromyalgia. As nabilone improved symptoms and was well-tolerated, it may be a useful adjunct for pain management in fibromyalgia." from Nabilone for the treatment of pain in fibromyalgia. "This pilot study demonstrated that a generalized statement that delta-9-THC is an analgetic drug cannot be made. However, a sub-population of FM patients reported significant benefit from the delta-9-THC monotherapy." from Delta-9-THC based monotherapy in fibromyalgia patients on experimentally induced pain, axon reflex flare, and pain relief.
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I had been meaning to answer this, and of course never was motivated enough. When I saw it was active again. I decided to chime in. I was diagnosed with Fibromyalgia 6 years ago about 15 months after I had my daughter. I at first thought it was just postpartum changes, lack of sleep, new mom syndrome. Looking back on it, I've had back problems, migraines, carpal tunnel, GI problems since my late teens/ early 20's. I've always had chronic pains, but the sleep issues,poor concentration/forgetfulness, chronic exhaustion was mind blowing. Leading to many specialists, and many antidepressant trials. I have tried both Lyrica and Cymblata with no significant benefit. I had returned to work part time, but I just couldn't focus to complete paperwork, I'd drive and not know how I got there, my attendance was poor, and the final straw was a patient error. I went on a leave, and 3 grueling years later was approved temporary disability. I have tried many things, PT, massage, many medicines,therapy. And I've seen many specialists. Recently seeing a gynecologists to see if hormones are playing a role in this. Again the answer, it's Fibro suck it up. I'm seeing a new female psychiatrist at present, and she says she likes a good challenge. Well here I am. :) It seems I'm flared the majority of the time, but winters are the worst! And I'm frustrated with the lack of benefit of any treatment, 9+ med trials, and counting. I feel like a shell of my former self, and most days I'm in tears thinking this isn't what my husband signed up for, and it's definitely not the kind of mom I want to be. Life just sucks! Reading the posts here, admiring everyone's gardens, and sense of humor usually brings a bright spot to my day. Even if I can't get motivated enough to plant seeds, or have the energy to work in the garden, I can live vicariously through you all. :) A little piece of my remaining sanity......LOL. Now if I can just remember where I put my seeds, and hope I don't forget where I'm going on the way out to plant them, or where I hid my milk jugs so I would be sure I didn't forget where they were. There are times I seriously think I can't keep doing this.But it takes on glance/word from my little girl, and I struggle on. Here's hoping for some new success. Thanks for letting me vent. Best wishes to all, hang in there!
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ruthieg__tx
12 years ago
None of the doctors around her have trouble believing it's for real and I certainly don't. I see my pain specialist tomorrow for it.
JennaVaNowSC
12 years ago
OJ... I have Fibromyalgia along with Chronic Fatigue Syndrome. Has been 20 years since I was diagnosed. It took three years to get the diagnosis, and find a doctor who would take me seriously. Believe me, it is no fun. Only someone with this pain syndrome can appreciate what it does to one.
I am not in Canada but I wish i could hear this broadcast. Thank you for sharing.
tami_ohio
12 years ago
I was diagnosed a few months ago, tho I don't have it badly yet. For me, so far, it comes and goes, and travels. Sometimes with no warning, my thigh muscles start paining badly, so I can hardly stand up or walk. Other times, it feels like I have a really bad case of rug burn on my forarms. Sometimes it's like one huge bruise all over. A friend in MI says she is never pain free, it's a matter of what degree of pain she is in, whether it's a good day or a bad day. I am so thankful that we are finally being taken seriously! My mom also has it, along with Chronic Fatique Syndorme, like JennaVa. Thanks for sharing!

Tami
Jodi_SoCal
12 years ago
I am 58 years old and was diagnosed when was 27. When I was told what I had, I had never heard of it and thought the doctor was making something up just to make me go away. I ignored what little advice he offered and continued to live in pain for many, many years.

Then I saw a doctor who suggested antidepressants. Not for depression but for sleep and pain management. Made a world of difference.

But every so often I get break through pain, like right now during a very stressful period at work. When that happens, I start taking two Magnesium Malate a couple times a day and usually the pain pretty much subsides.

Even with the meds, I still have chronic pain but it's not debilitating like it could be.

Jodi-
Lily316
12 years ago
I was diagnosed when I was 50. I was watching my one year old granddaughter when the symptoms began. My family doctor sent me to a rheumatologist and he diagnosed me. I had never heard of it either . My pain begins when I am under stress. I have sleep issues and that can be problematic too..
joyfulguy
Original Author
12 years ago
The lady to whom I referred is an outgoing, vivacious person and keeps very busy at a number of projects, in addition to her work.

ole joyful
User
12 years ago
I have been diagnosed with it by my rhuematologist. I denied it for so long but still took the lyrica he prescribed for me as it helped with symptoms. I was ashamed of it as so many people made fun of people who had fibromyalgia, saying it was a lazy man's disease. I have told no one, and only my husband and my one of my daughters know..she has been diagnosed with it also. I have finally come to terms that yes, I do have it and it is real and not just in my head. I suspect my grandmother had it also, but there was no name for it back then, but she had the symptoms for fibromyalgia. Right now mine is in a sort of remission if that is at all possible, but when it comes back it comes back with a vengence, and starts in my muscles. It is so awful and painful. I also take neurotin along with Lyrica.
Chi
12 years ago
Is there a version of Fibromyalgia that only hurts when pressure is applied? For a few years now, my lower back is extremely sensitive and a finger lightly poking it will be excrutiating. However, it doesn't hurt unless it's being poked. Blanket pressure doesn't hurt either. It's just the pressure point of an object. If I'm laying down and my cat walks across my lower back, I usually jump up because the pain is so intense.

I don't know. It's hard to describe and doctors think I'm nuts. I've had xrays that come back fine, my bone density is fine, I don't know what it is. It's not one spot, or just by the spine, or anywhere...it's the entire lower back from side to side starting at my waist down. Everywhere is sensitive.

Fibromyalgia runs in my family so I was thinking maybe I'm developing a mild case? But it sounds like, from the stories above, it causes pain regardless of outside stimuli so I'm not sure now.

Anyone with Fibromyalgia?

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alisande

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Anyone with Fibromyalgia?

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