Fibromyalgia pain: Let's connect

Hi
My wife suffers many years from fibro. All those years she got LYRICA and CYMBALTA . 2 years ago we have entered a senior citizens home . Here the specialised doctors suggested to try a mixture of canabis oil and to reduce slowly the other medications. In her case , it is a big success.

I spent time at Mayo this summer and had 16/18 pain points, similar to you. A few things I learned - hydrocodone is actually bad for fibro, and can increase/move pain around because you're not dealing with the underlying issue. (Believe me, I hated hearing that as I feel like it gives me relief.) I started taking Cymbalta, which has been much better for me (I was taking Wellbutrin before as my doc thought it was primarily depression). Cymbalta seems to be better for fibro pain. I was never a believer before, but after a Mayo class and multiple doc visits, I'm really embracing meditation, breathing, and giving myself a break - as in, not expecting my activity and pain levels to be like they were pre-fibro or when I was younger. This video gives a really good primer on the underlying issues of fibro - it's your nervous system that is struggling, so though the pain is real (and awful), it's more like your nervous system is tricking you than you are suffering acute pain. If you focus daily on breathing/meditation/other methods to get your brain out of fight-or-flight mode, I think you'll feel improvements. I'm about 4 months into the combo of Cymbalta and daily meditation (Headspace app makes this really approachable if you've never tried), and I can't tell you how much better I feel. I still have occasional bad days and try to understand what's causing them (like weather changes, additional stress) to manage better, but overall I'm so much improved. I hope some of this helps. Good luck. It's no fun to have so much pain. 🙁
https://youtu.be/8defN4iIbho

Thanks to all of you who have shared your stories! Fibromyalgia seems to be so individualized in the degree to which it affects people and how or if it responds to medications. Unfortunately, I have tried everything that has been mentioned and nothing has been really effective...feel like there is a little black storm cloud over my head! It makes me happy to read of improvements others are able to experience and I monitor posts and may some day read about a medicine or method that I haven't yet tried! I live in a pretty geographically isolated state and so far I have not been able to participate in any clinical trials. It does instill hope, however, to know about the trials and that an effective medical intervention may be just around the proverbial corner! I have read that opiate pain medications are not necessarily the best treatment for fibromyalgia pain, but none of the nerve-focused medications have had any impact on my pain level (which is quite high). For now, until science identifies something better, I use a low dose, opiate pain patch which is changed every 3 days. Although it doesn't completely take the pain away, it makes it livable.

Have any of you noticed your pain increasing/decreasing in correspondence with the barometric pressure? Stable air pressure, preferably high pressure, dramatically eases my pain. Low pressure and pressure fluctuations increase my pain. I live in a pretty windy area and the high wind days increase my pain. II have traveled to Hawaii once and to the Florida gulf coast and my pain disappeared at both locations. I have read this may be related to altitude, warmth, humidity and fairly steady barometric pressure. Has anyone else had similar experiences? My wife and I are going to plan a couple trips to these locations (or similar) to try and get me through what is predicted to be a long, cold and snow-filled winter where I live.

@rossjt Wildly waving my hand in the air, here! Yep, I am so sensitive to changes in pressure and humidity. No need to look at weather.com or the news, just tune in to my body ;(( It seems once the pressure changes and stabilizes, either high or low, my system settles down. But that period of flux is hard on me. Achy joints, stiffness, yawning like I can't get air, migraine like headaches.

What is a good remedy for one, is not for others. I am headed to the couch, to snuggle under a flannel blanket. Our cat will join me soon after, and she always seems to comfort me.
Ginger

I'm with you! I live in Florida and I am hating the current weather. Right in my bones and spine! Ronnie

I’ve had fibromyalgia for years and I can appreciate your situation. At one point my doctor discovered that my vitamin D levels were very very low. So one thing that helped me quite a lot was getting my levels up. It took quite some time to ramp up but I began to feel improvement in pain and stiffness after two weeks. So the only thing I can suggest is having your doctor check vitamin D levels as that made a big difference in my experience.

@gingerw Right there with you as well. Flux Sucks!

@rossjt @gingerw @Parus et. al.
Hey, you guys are all singin' my wife's tune. She goes into a slump every time the weather changes, either with pressure going up or going down. She began to be aware of this a year or two back after reading or hearing something about it. Now it is like clockwork, the weather changes and she begins to feel worse. It's automatic. Her fibro, her headaches, her neuropathy, just abut all of her sources of pain get worse. So far there doesn't seem to be much she has found to compensate for it. But it does help to know about it. Hank

@whattodo You are right. I have been taking Vit D supplements for years. For my family, it might be a hereditary thing. My sisters had critically low Vit D, one even almost displaying MS symptoms, before starting supplements.
Ginger

Hiclownscrytoo. My name is Anne,I'm English now a Canadian citizen living in BC. I am going to be 67 on your Thanksgiving and have had Fibro since I was 29yrs old. Mine came on within a few hrs of giving birth to my 4th and final child the onset was that fast. I do wonder if for me it's hereditary and my grandma and my mum suffered with Chronic pain too.I have been suffering since my mid 50's with Osteoarthritis too throughout my body. I worked as a Psych nurse till I was 58yrs old then the muscle spasms from the arthrits in my spine made it so I couldn't get through 12hr shifts and certainly not with unpredictable patients that any Psych unit has to deal with.I also had had joint replacement in both thumbs which my dominant hand didn't go so well so drawing up and giving injections became impossible. I start my day struggling to get out of bed due to the stiffness everywhere. It does take me a while to get going as I am usually quite dizzy for quiet a few minutes. I find throughout the day I subconsciously have to think about every movement from bending while I clean the house to just reaching into cupboards to get things down. Every night when I go to bed I have a mantra " will get up and move more/exercise more/stretch' but morning comes and I just keep putting it off and I know my muscles are losing strength because my knees suffer getting in my husbands truck or getting up out of a chair . Now I'm retired it's so easy to sit and just watch TV. I used to go to the gym when I was younger and it did help to keep me stronger but now I can't grip weights due to the arthritis in my hands and I feel stupid when I see 80 odd yr olds doing their routine. As I write this I think I sound so pathetic because I have nursed people like us who came to the unit with severe depression and I should be practicing what I preached to them. SO, I am going to get out and walk more ,I am going to get out and walk more,I am going to get out and walk more. I am going to tell myself and you what I told my patients 'Exercise is the best thing for pain' stay safe clownscrytoo.X