The Organisation for the Prevention of Intense Suffering (OPIS, www.preventsuffering.org) is a Swiss-based, non-profit think-and-do tank promoting the prevention of suffering as a top priority of our society. We work with other organisations and patient groups, including to advocate for better access to effective pain medications for cancer patients and people with excruciating cluster headaches.

OPIS is running a large-scale survey to learn about the suffering people experience as a result of various diseases and conditions, including intensity and duration, and measures that people have found useful for alleviating their suffering. We plan to submit the results to a scientific publication and also publicise them ourselves as part of a wider overview of suffering on our planet. Our goals are to raise awareness of the scale of suffering, promote suffering metrics to better take into account this suffering, and promote effective steps that can be taken to address each source of suffering.

The survey is mainly multiple-choice and takes about 5-15 minutes to complete, providing information on 1-3 life conditions (past or present), and it can be filled out anonymously. If you would like to participate, the survey link is below. Please also consider forwarding the link to others in your network who have experienced significant suffering from a life condition and may want to contribute. The survey will remain active at least until the end of autumn 2024.

Many thanks!

Survey link: https://docs.google.com/forms/d/e/1FAIpQLSfMDXXSA-6MtPlDhhbzVv8XYIh6zvXbZcqeZJBPbHwMBIIhww/viewform

How does one exercise and lose weight when one has such a debilitating condition like Fibro? Does anyone have any hints, tips or tricks to do this in a safe manner and not die from pain in the process

Hi, I've been walking with fibro for about 4 years and have been experiencing face "spasms" not sure what to call it, but whenever I begin to feel stress it feels like my face muscles is pulling, contracting might be the right word, it feels uncomfortable, is anyone else experienced this?

Hi I’m just wondering what everyone takes to help them with their daily symptoms with fibro really as I’m struggling and loosing the plot and just wanna try anything to try get some sort of life back, thanks x

Does anyone here have pain with arousal? Just got diagnosed with fibro after covid made my chronic pain symptoms 10x worse. Although my general pain worsened as well, the worst thing so far has been that sexual arousal also makes specific pain spots (hands, knees, stomach) get really bad pounding pain and gives me nerve pain all over my body. Like even just thinking about something sexy makes my pain start up, and the pain will take hours to days to subside. Other then that, my fibro symptoms are generally well managed. Does anyone else with fibro experience this, and if so, what helped you?

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What do we do about painful hands?

Nothing works. Gloves, Meloxicam, NSAIDS, heat, ice, any kind of lotion..

Help!

Good afternoon lovely people!

A little bit about me, my name is Lora, and I have joined this community because fibromyalgia is something I have been dealing with for the past few years. My experience with the condition and all these different kinds of ways of dealing with FM has inspired me to study a Masters course in Health Psychology at the University of Portsmouth. I have been fortunate to be able to do my final year project on fibromyalgia, ways of dealing with the symptoms, and most importantly, on ways people would like to be supported by the healthcare system. I am now gathering participants to do online interviews with, more specifically women diagnosed with fibromyalgia that would feel comfortable sharing their experience with FM and their coping mechanisms. If you would like to share your story and be heard, please contact me on up936512@myport.ac.uk to arrange an online interview, or for me to provide you with more information!

Thank you all for your time, I hope you are all having a good day today. I really hope we can make a difference together!

idk what to say i haven't even turned 21 yet and i'm already looking into buying a walker. i have endometriosis, fibromyalgia, and chronic fatigue, and my pain and exhaustion are literally nonstop. i mean i genuinely haven't been able to recall a day without pain since before i was 7 or 8 years old.

one of my favorite things to do is to go to concerts, but recently i've been needing to go to the back to sit down, or leave hours early just because i can't fathom standing any longer. it seems like disabled seating (if any) is in the least optimal viewing spot and i really don't want to compromise my (and my friends') enjoyment of the concert just bc i'm tired.

is it like ok to bring a walker to a concert ? i mean obviously it SHOULD be ok, but i worry that as a young, healthy-looking person it will just bring me ridicule and questioning more than just the support i need.

i work full time so i haven't really thought about getting a mobility aid before, but i'm at the point where i'm expending 90% of the energy i have on work, paying bills, and keeping myself alive. i just want to be able to enjoy my hobbies and not have to give up another thing i love

My doctor says I very likely have fibromyalgia but that doctors don't like to diagnose it and it's more of ruling stuff out or something along those lines, I don't know if I should seek further testing, I'm just generally on the fence and I was hoping someone might have some advice? I don't want to outright say I have it without having a diagnosis ofc I just don't know generally what to do.

Any advice would be super helpful! I hope it's ok to ask this here!

Hi everyone! My name is Ujjwal and I'm currently working on a research project at the Royal Melbourne Institute of Technology that is focused on understanding invalidating experiences (discounting of symptoms, lack of awareness etc. ) in chronic health conditions such as Fibromyalgia. If you have had Fibromyalgia for more than 3 months, and are above the age of 18, you are invited to participate in our study. Participation involves completing an anonymous online survey. Current research highlights invalidating experience are common in conditions such as Fibro so we would really appreciate your participation. Thanks for your time

Survey Link: https://rmit.au1.qualtrics.com/jfe/form/SV_eVPZONKKd8hpenk

This study has been approved by the RMIT University Human Research Ethics Committee, Ethics ID: 27677If you have any questions, please feel free to DM me and thanks again for your support.

Does anyone take magnesium for pain management? I'm breastfeeding, so I can't take much right now, and my leg pain is so intense at the moment when I wake up with the baby that I can never fall back asleep. I desperately need to sleep to even start to get out of this very long flare.

Hello,

I'm conducting research into the motivations for complementary and alternative medicine use in those with chronic illness, particularly with illnesses such as fibromyalgia. If you are a UK resident age 18+ I'd really appreciate you sharing your experiences and thoughts. The questionnaire takes 10-20 minutes, and you don't need to be taking, or have taken, alternative treatments.

The study has received ethics board approval. More info and survey here https://brookeshls.co1.qualtrics.com/jfe/form/SV_4Vd4CYsLzLY4o3Y 

Posted with mod permission.

Thank you for your time

I am 17f, there is no reason for me to be this forgetful is that a fibro symptom ? For example I forgot people birthdays no matter how close we are so how much I try to remind myself, I forget where I put my stuff and only find them because I am very organised so everything has it's own place, sometimes I even forget stuff I was just talking / doing, is anyone else experiencing this?

I foolishly told someone recently that my flare ups had gone down to almost zero since starting my current dose of Lyrica... and, of course, I jinxed it. :( My nighttime pain in my feet, calves, and wrists has been excruciating the past few days, and nothing except scalding myself in the shower seems to dent it.

I'm curious what others are on for medication (and dose), and if any other alternative therapies have been helpful?

TIA!

Hi! So as the title says... Me(F35) and my SO talked about becoming parents at around 35-38yo, but we have thought a lot about adoption, not only because of my fibro, but also because there are a lot of kids without family, the environmental crisis and that we both believe we can love somebody as our own. With that said, these past 3 years gave us 3 nieces. And seeing how they are so cute, and how important is education and love since they are little babies and how the genetics mix in their faces and personalities has made me wonder... What would a child of ours be like.

So.... I want to know... Have any of you inherited form parents/ inherited to your child your fibromyalgia? Women who have had children with fibro, how was your experience?

Please anything shared will be very appreciated, I don't know who to talk about this.

Edit: typos

The pain clinic that I've been going to for the last 5 or 6 years closed their doors with less than a weeks notice to the staff and patients. My clinic is one of 6 or 7 clinics owned my the same medical group. They have declared bankruptcy and now all but 1 clinic is closed and they will be closing on or before August 30th and they have stopped all procedures.

It has been a mess for the whole West Michigan area since they probably treated more than 50-60% of all pain patients in the area. Now 40 to 50 thousand people are scrambling to find a new doctor. All the good clinics don't have enough staff or offices to handle the new patients. Thankfully, over the next several months they will be able to hire some of the staff that lost their jobs, but it will take longer for any of them to move into larger facilities or open new locations. Lots of people are now looking at long drives to pain clinics outside of the west Michigan area.

Thankfully my primary care physician is able to take over my pain medications, but I won't be able to get my spinal injections for at least several months which sucks because my spine is pretty messed up. I have a referral in to a new clinic but I'm being told that it could take a month to even be told when my first appointment is. I'm living like my next injection will be in early 2025, if it is earlier then great, but I think that timeline is pretty realistic. I've had to stop my volunteer work that I absolutely loved and I'm limiting my social activities to conserve spoons for the mundane tasks that have to be done.

This is a really scary situation and I'm very worried about the patients who live in facilities that are understaffed. I wonder how long they are going to have to wait to get to a new doctor and if they are going to have their pain meds in the meantime. I also worry that there are going to be patients who get overwhelmed by this situation and this is the tipping point for them to do something that can't be undone. I'm close with a few other patients and it is hard to watch them be in so much pain and so worried about how they are going to get the medications/treatments that allow them to get out of bed.

I wish that there were safeguards in place to ensure that when this happens patients are able to get the treatments and medications they needed while being transitioned to their new clinic. It just doesn't seem like this should be legal. So many people are not going to taper off their meds correctly which could cause serious medical issues. I worry that the next clinic will have the same issues and eventually close too. The American healthcare system is broken and needs to be completely overhauled so that patients can have the assurance that they won't be randomly left stranded.

I'm really trying to see the silver lining. If I'm able to find a good doctor they might have new suggestions for treating my spinal issues or fibromyalgia. I've also been reminded of how amazing my support team is, but I also feel so bad that I need so much from them.

Thanks for listening to my huge rant I really needed to vent.

Edit: I know this would triggered many of you and I understand . I believe my will is good being there, seeking for opinions. We can all agree, the sick one in an relation is the real one hurt. I tought maybe, the caregiver did not have to hide the sacrifice he/she does for his love one so It did not hurt the partner. Anyway, I think I'm just realizing Im not good enough , thats All

I know I’m going to get some backlash, but I just want to understand better.

My wife has had fibromyalgia for almost 10 years. I try to support her as best I can. I have become the sole provider, and we manage to keep the chores split 50/50. I am grateful that she can help our family under the circumstances!

When she’s not feeling well, I encourage her to rest. She does a little around the house or nothing at all. But that’s perfectly fine.

I have a bit of trouble understanding how I should react when she says she feels good. Understand me, she doesn’t have endless energy, but some days are more normal. Most of the time, she does things for herself, like gardening, playing with our daughter, reading, etc.

I don’t expect her to suddenly burn herself out by cleaning the entire house, but I feel a bit hurt that she doesn’t try to do a little more on those good days. For me, reciprocating has always been seen as a sign of gratitude, a thank you, even love.

I’m the first to thank her three times when she does a task and almost immediately do something in return for her.

Is this normal? Does she take my help for granted? Am I lacking compassion or understanding? I can understand that she wants to enjoy her time when she feels better; I’m not naive.

I am even very happy when she feels better.

I don’t know if it’s a selfish side of me; I work 45 to 55 hours a week plus half of the chores, and I feel exhausted. I don’t attribute any bad intentions to her. After 10 years, just feel a little more hurtfull it seems

PS: I know I should confess to her and tell her how I feel, but she takes it as criticism, so I prefer to keep quiet.

Hello, I have not been diagnosed with fibromyalgia, but I am wondering if anyone had symptoms that started out similar to what I am experiencing right now. I have been having full body muscle twitches/spasms, which aren't necessarily painful but a little off putting because of how consistent they are. Also have been having pretty bad headaches, but I have always had those.

I am only 19(f), but I know this can affect any ages. Let me know your experience!

hello everyone! first time posting on this sub but i am a 21 yr old AFAB person w/ fibromyalgia, hypermobility (HSD) and level 1 autism (ASD). with this combination of diagnoses, i find hot weather and the summer season in the general to be a sensory NIGHTMARE that flares up my flu-like/feverish fibro symptoms and has been causing me sun rashes as of late. in addition to venlafaxine and muscle relaxers, i’ve also used cbd in various forms which has helped in the past.

that being said, how do you guys feel about the summer season? and for those who struggle during it like i do, what has helped you in the past?

I used to have really good constitution against feeling faint but in the last year I've felt like everything and anything makes me feel like I'm about to pass out, it started with prolonged standing or with a really bad Ibs turn but now it's all the time I get up too fast, I've stood too long, walk more then ten mins, food shopping, siting at my desk, when I get exhausted.

I don't know how to combat it either and although I haven't passed out ever I do get scared that it's going to happen, I get really week my knees start shaking, get the sudden sweating and clammy feeling, my vision starts to go. Is there a specific thing that causes this and any ways to stop it or build up my tolerance again?

Anti inflammatory found in vitamin store.

So a I’m almost 30 year old woman with Fibromyalgia I’ve struggled with it for 6 years and wasn’t diagnosed with fibromyalgia until 2020 & since then I was told if I “ lost weight my pain will get better “. I’ve lost 60 pounds and I still hurt in my lower back and legs every day. And this past January I did an MRI on my back and they found a large herniated disc in my L4/L5 nerve root. Since then my nerve pain in my legs have gotten worse my back pain is even worse even after physical therapy, meds & I’ve gotten plenty epidural injections. I’m still having bad pain mainly in my lower back ( where my disc is located) & down my legs. My surgeon thinks I’ve tried everything else for treatment and I just need to get my disc removed with a Laminectomy & Discectomy. My final decision appointment is next month where I would actually schedule my surgery. But should I ? I’ve heard that spine surgery’s even the “ minimally invasive” ones can be super hard for us fibromyalgia patients to handle and recover from or even make the pain worse! Someone ease my mind on this should I get this disc out of me !?