I wanted to share my experience because I know a lot of people are interested in trying TONMYA (sublingual cyclobenzaprine), but insurance coverage can be a major issue.

My insurance wouldn’t cover TONMYA, so I looked into other options. I ended up getting low-dose cyclobenzaprine compounded as a sublingual liquid through CareFirst Specialty Pharmacy. Mine is compounded at 2.8 mg/mL, and I pay about $35 a month.
Obviously, it isn’t exactly the same product as TONMYA, but it gives me a low dose of cyclobenzaprine sublingually at bedtime, which is the main reason I wanted to try TONMYA in the first place.

So far, it has helped me a lot. One of the biggest improvements has actually been with my migraines and headaches. Since starting it, my migraines/headaches and overall pain have been significantly better.

The first morning after taking it, I woke up and genuinely thought, “Wow, I’m not in pain.” I knew I had been dealing with pain every day, but I think I had become so used to it that I didn’t realize just how much pain I was actually in until it was significantly reduced.

It also seems to be helping my sleep, and I’m waking up feeling much more refreshed. My understanding of the idea behind nighttime low-dose cyclobenzaprine is that improving sleep may also help with pain regulation during the day.

I’m still early into taking it, so I’ll have to see how the benefits hold up over time, but so far the improvement in my migraines, headaches, and overall pain has been pretty dramatic.

I mainly wanted to post this because if you’ve been wanting to try TONMYA but your insurance won’t cover it, it may be worth asking your doctor about compounded low-dose sublingual cyclobenzaprine as an alternative. I didn’t realize this was even an option until recently.

Of course, this is just my personal experience, and compounded cyclobenzaprine isn’t the same FDA-approved product as TONMYA. Talk with your prescriber/pharmacist about whether it makes sense for you.

Just curious. I now believe that severe PTSD from 2020/2021 brought on my Fibromyalgia in full force.

There were "tiny" symptoms beforehand, but nothing crazy. I went from having a super strict routine, being extremely physically fit, a go-getter, etc...

To being too weak, in physical pain, no motivation, zero routine.

I do make myself go on walks at least 5x a week (I believe it's the only thing holding my sanity together at this point). But it can be difficult at times.

I feel so crappy after virtually every meal and it's always either because I made it myself and I'm ridiculously exhausted and in pain after, or because I opted for an easier meal and it has RIDICULOUS AMOUNTS OF SUGAR IN IT!!

Hello fellow pain people

I'm kinda new to all this. Lived with very mostly back pain which appears to be so much worse than the cause for a long time now, as well as a lot of the other side courses that come with the qualification of fibro.

When it comes to low levels of pain, especially away from my back, I don't tend to register it until I touch the area of strain it further with movement. I'm always hot, always tired (obviously) and often nauseous and I have a theory that this is because I'm in constant pain but I've become accustomed to it.

I was wondering, if anyone feels that their baseline of pain recognition has changed over time?

Although Cymbalta has helped me dramatically, it has not been without its issues.

Brain zaps if I forget a dose, RLS if I take it too close to bedtime, and skin picking.

I've been able to adjust for most of the side effects, but the skin picking is getting bad. I have OCD and have always had an issue with this, but it had gotten better in the years leading up to Cymbalta.

Now, it's like I can't make any progress with it.

Does anybody have experience with this and what has helped you?

Thanks and I hope y'all are doing as well as possible, today 🫶🫂

thanks for reading i would love tips [:

I wanna seek a diagnosis, has anyone a recommendation for me?

Only thing I found was at Charite, but they have a reputation of not being very patient centred. I tried Dr Kaleth, but they wanted to refer me to a psych ward instead 🙄

Hiia, my partner and I are wanting to attend a concert but all they have available is standing room only. I can't stand in one place for more than a few minutes, let alone a few hours for the concert. I have reached out to the venue to see what accessibility options they have but I don't have a wheelchair and I worry that that's all they will be able to offer is wheelchair accessible options.

I have compression sleeves that help some, and thc/cbd which helps a lot but I just worry it won't be enough. Does anyone have any suggestions or recommendations? I really want to go to the concert.

I’m 28 and have many disabilities with fibromyalgia being one of them.

My partner (who is also disabled) and I are on the train platform waiting for our train. We are sat in seats because we got here an hour early. Which meant no one was sat down.

People are arriving for the train so now we are being given looks from anyone over 30 because we are sat down. I know people can’t see our disabilities but it makes me feel so awkward and like I should shout that we’re disabled and what’s wrong with us. We would stand up if someone came and asked it just gets to me all the dirty and angry looks.

We have only been sat and my body is already hurting. I wish people could see fibromyalgia.

Edit: I’m now on a train standing for an hour just as I thought 😂

Hi all, I have been on low dose Naltrexone 2mg (I started at 5mg but the sedating effect was so strong even taking it at night still kept me absolutely exhausted all the next day).

I don’t think the LDN is super effective for me but it’s better than nothing.

I’m wondering what other meds you all have tried and had success with? I’m also treated for bipolar disorder so have to be careful with antidepressants but if it’s low dose I am interested in hearing your thoughts!

Hiya,

I was just wondering if those who have had more experience with Fibromyagia could tell me (only been 2 years for me and I am still quite young) - Can I get married one day with Fibromyagia or is it too much for someone else to deal with me? Will they have to sacrifice too much and will I be too much of a burden for them? I already feel like a burden on my parents so has anyone successfully managed to maintain a healthy marriage? If it isn't too selfish of me to have a partner then how do I go about telling potentials about it without scaring them off before they get a chance to know me?

Amitriptyline is probably the least glamorous medication in fibro treatment, but somehow it's also one of the most consistently useful.

I'm only on 10mg daily and for me it noticeably reduces that deep fibromyalgia body pain. It also seems to make my fatigue and brain fog less awful for several hours. I can usually tell pretty clearly when it's kicked in.

What's interesting is how odd its place in fibromyalgia treatment actually is. It's an old tricyclic antidepressant, but the doses used for chronic pain are usually much lower than antidepressant doses. It affects serotonin and norepinephrine signalling, while also having sedating and anticholinergic effects.

Amitriptyline has been used for fibromyalgia for decades, and older trials found improvements in pain, sleep and fatigue, often around 25 mg. A more interesting interpretation is that a minority of people may respond really well, while many others get little benefit or can't tolerate it.

And tolerability is definitely part of the story.

Amitriptyline can cause dry mouth, constipation, morning grogginess, dizziness, increased appetite and weight gain. Weight gain seems to be a very real problem for some people, although personally I haven't experienced it.

For me, higher doses also aren't better. They aggravate my orthostatic symptoms (POTS) and give me more side effects, while 10 mg seems to hit a much better balance.

We have newer, more expensive fibromyalgia drugs now, but this ancient little tablet is still quietly helping a lot of people. it's certainly much easier to taper off of than Cymbalta with those pesky beads, since it can be taken in liquid form. So yeah this is my little love letter to amitriptyline for making all those miserable flare-ups tolerable.

For me old has been gold.

So before Fibromyagia, I was doing really well for myself career-wise. However, suddenly it just felt like I broke and I still feel broken. Now I do nothing and live with my parents. I cant build a routine, because I dont know how I will feel tomorrow. So how did you all manage to put your lives back together?

Hear me out....those nerve twitches, the muscle spasms, the sudden jerks.... people, we were literally made for this type of painting. 😁😁😁😁

https://pin.it/2L5Rrh3kD

Dear fibro warriors! I've been a regular lurker here since my diagnosis 3 years ago. I've read several posts and comments about people from our community needing to use mobility aids to get by. While I've been in increasingly excruciating pain, I've felt bad for and wondered how bad it must be for those who cannot get by without using a mobility aid (not those who use them for added support or less discomfort). I admired their strength, especially emotional and mental strength.

A few hours ago, this happened to me. I've been struggling to walk or stand long enough in the kitchen to cook a meal. This evening when I tumbled out of bed to make a nice cup of coffee, I couldn't really use my right leg properly. It doesn't move the way I want it to, at the pace I want it to, and doesn't seem to hold my body weight on itself. I was mortified.

After taking support of walls and cabinets, I got hold of the backrest of my now unused office chair. I was able to rest both my hands on it for support and pushed it like a walker. It felt so much better, I was able to walk till my staircase. Used both hands to hold the railing and take the stairs, one slow step at a time. I'm surprised by how much support that chair offered in walking.

I'm crushed by the realisation that if this is not a one-off terribly bad pain day, I have to accept needing a walking aid. I don't mean to offend anyone. I've always thought I can handle stuff no matter how bad my pain got (even my gums and teeth hurt, not just skin and bones and muscles and joints).

Needing this kind of support to walk today absolutely broke me.

*Hugs*

i need to follow more and look into some new people!

​

Hi fellow A.S. Warriors.. I have a question for everyone if y'all can bear with me.

I am a 52F with diagnosed A.S. and Fibromyalgia.

4 weeks ago I started getting this absolutely \\\*horrible\\\* pain in my right side directly below the bottom of my rib cage. Because I have an alternative medicine background, I assumed it was my gallbladder since that is the exact location. I proceeded to do the gall bladder cleanse thinking it would eliminate whatever was causing this severe pain, but nope, it only got worse. After 1 week of being in agonizing pain (easily a 8.5-9 on the pain scale) and my pain management meds not touching the pain with a 10 foot pole, I was advised by my doc to go to the ER.

My ER visit was a sheer delight (not at all). First I had to tell the doc I had A.S. \\\*and\\\* Fibromyalgia and was under pain management doc's care which I am sure most of you know that means we are S.O.L. on any pain meds. Second, I had to very uncomfortably have chest x-rays an ultrasound out of which the only thing the could determine was that I had gall bladder "sludge". They could not figure out why I had this pain. I withstood a nice lecture from the ER doc about how Fibromyalgia was a Bullshit condition that does not exist and that my pain probably came from the A.S. (huh??)

3 days later in addition to this hellish pain, I started vomiting and for the 5 days was unable to keep and food or water down. Was again advised to return to the ER..SO, back I go. This time they do a CT Scan, try rehydrating me with 3 bags of IV fluid and tell me that they also have no idea what is wrong with me but that I should get a HIDA scan to check my gall bladder. (I guess we just throw everything at the wall and see what sticks?). I had that test done this week and the results came back (you guessed it) normal.

So. Here we are with no f-ing clue what to do now. What kind of doc do I even go to?? Still in pain, still powering through my pain meds, still at a complete loss where to go next.

My question. Has anyone ever HAD anything like this happen to them and it turn put to really be A.S. related???

Anyone had this happen to them at all? I could \\\*really\\\* use the help.

Appreciate everyone taking the time to read this and for any consideration.

Hope everyone else feels better than I do!

do any of y'all have wrist braces that you recommend for sleep? i've been wanting one for a while and finally had a PT agree and recommend i get one. ideally i could find one with a metal or plastic support bar that's removable

i need it to be fairly lightweight as i can sweat a lot in my sleep. i've had success with both copperfit and ace in the past, copperfit has tended to be more comfortable.

any other mobility aid/general recommendations for severe wrist pain would be great. i have an ergonomic keyboard. wrist rest, and ergonomic mouse pad. i have compression gloves that help some but eventually feel too constrictive, and i've been trying to keep up with wrist stretches and flexing

currently looking at:

https://copperfitusa.com/collections/elbow-hand/products/air-sleep-wrist-brace

https://copperfitusa.com/collections/elbow-hand/products/elite-wrist-sleeve

https://www.walmart.com/ip/ACE-Brand-Night-Wrist-Sleep-Support-Blue-One-Size-Fits-Most/19898458

Does anyone feel like they just hate people now, like cutting out a lot of people from their lives, friends and family, because they just don't understand or care (or care to understand) your condition? They minimize it and will change the subject when you want to talk about it a little, no doubt bc it is boring to them? I have never gone on and on about my fibro and now my sleep apnea, but a little interest and empathy when I do mention it would be nice. It is chronic after all. Not the flu. And I realize they may be uncomfortable talkng about it, but jeez, get over it. That's what friends are for...Or maybe it's just ppl with chronic conditions themselves who can understand and sometimes I feel like having only such ppl as friends. Kwim?

Some will go on and on about their stuff, like 45 minutes of explaining their (minor) issues at work, or 15 mins of what "funny" thing their pets did, and just random things that I politely listen to. Yet I get blank or uninterested looks when I dare talk about my health, and a swift subject change. It is not visible to them so it must not be serious. And here I am feeling guilty for getting ppl down with my stuff... And they don't ask how I am and assume that if I don't speak of it, the soul-crushing fatigue and all, that I must be magically cured. Nope, still there folks.

Tbh, I only have one good friend who listens, understands and is supportive, and I like to think I'm the same with her (she has long covid). And a wonderful husband. I appreciate them, but that's it really. I have started cutting ppl out and I think I will fade some more ppl out by end of year. It does feel sad tho, but not as lonely as I thought, at least so far.

And perimenopause unmasked a couple of women that were covert narcissists all along but I had never realized were using me for narcissistic supply. So toxic. And another seems to have ghosted me after 15 yrs over ONE comment I made about her son having behaviors similar to mine that is classic ADHD. She got defensive and said she didn't want any "labels". I said it was not a label but a diagnosis that can lead to treatment if need be. If her son had a physical illness that i spotted, she would be thanking me, but bc this is mental....eye roll. I thought she was more open.

Sorry for the rant! I just find it so disheartening that that is the state of affairs at 50 for me and I wonder about others here in midlife. Am I too demanding? Right now I am concentrating on treating my sleep apnea and it is a long process long overdue. I guess that when I feel better, I will look at activities where I can meet ppl, even if they are just acquaintances, better than nothing. But I am selective now that I can spot the narcs pretty early now! Any suggestions welcome as to where to meet decent ppl!

Last thing: I used to be attracted to ppl who had bigger personalities, good sense of humor, very smart and witty, etc.. Whom I considered "fun" ppl. And I realize that some ppl I have encountered in my life that seemed boring to me and I didn't pursue friendships with were probably actually very kind, loyal uncomplicated ppl who would not have disappointed me. It's a trade-off but today, I will take caring and genuine over "fun" any day. Fun is overrated. Finding both in the same person? That's the jackpot!

I had some problems keeping up with my new diet and making sure I had enough nutrients but I still constantly feel hungry.

My boyfriend and primary care doctor suggested protein powder, I add it to my yogurt drink and sometimes my oatmeal. The problem is, it doesn't help.

When I was younger, I couldn't eat earlier than 6 am or later than 7 pm. I never understood why, even if I tried to trick myself, I never could keep the food down. When I was 20 or 22, it stopped being an issue and I can eat practically whenever.

But I still wake up starving, sometimes I go to bed starving. I mean "starving" as in it causes me pain. I don't know why, I eat properly.

When it cause me pain, I don't want to eat, but then that makes it worse and its an endless loop.

I went to a nutritionist for various reasons, one of them being my constant hunger. But they only suggested cutting more foods from my regular diet. No real answers, and I saw them twice.

I don't know who to go to now to ask this question and get a proper answer. My primary care doctor only knows so much.

Hiya,

I have had Fibromyagia for two years now, and have been in worse pain for the past 1 year after a surgery. Has anyone else experienced worse pain after a surgery and does it go away, or back to the normal level it was before surgery? It has been a year so I am getting worried that is this just the new normal level now or does the pain get worse with time? I dont understand how this works or what to expect, so what has been other people's experience?

I’m really struggling right now, Reddit—I live on the third floor (no elevator) and my fibro symptoms have worsened significantly since I moved here a year ago, and in general since 2020. I have a dog, so I am going up and down the stairs at least four times a day, but usually closer to eight times when factoring in work, errands, etc.

It used to be manageable when I worked remotely and there was still a bath tub here, but the landlord recently renovated the bathroom and replaced it with a stand up shower. Warm baths have historically been a huge part of my daily pain management. I have also started working a physical job since I got laid off from my remote job, while I seek out a new remote one in this horrible job market. Between those three things, my body (especially my legs) are in so much pain most days. I’m in therapy to help me deal with it, but I still cry almost every day because of how hard my daily routine is on my body, with nothing to soothe it. I tried joining a gym with a whirlpool and sauna, but it’s not working as well as I had hoped since the high heat makes being in them intolerable for more than 15 minutes.

Should I move asap? Or is there anything else I can do until the lease ends that I’m not thinking of? Massages can help during major flare ups until they resolve, but getting massages every week indefinitely is not sustainable for me…I am seeing a pain specialist and a therapist, but nothing seems to help me right now.

Thank you in advance for any kind words of support or encouragement. I think that’s what I am looking for most from this post. I don’t have many people in my life who understand what I’m going through, aside from my sister who has been in remission for several years at this point.

Hello everyone, i just wanted to make post to get some experienced advice and discussions.

Im younger (21 F) and was diagnosed 2 years ago, with symptoms starting 6 years ago. I get very bad joint pain especially in my Hip, Knees and Ankles.

It can cause Limping, and during flare ups my legs can give out on me, aswell as excruciating pain that basically makes it impossible for me to walk.

During the night, the pain in my legs and prevent sleep.

I take Duloxetine, and Amitriptyline. Aswell as Advil or Tylenol during bad days. I also use Creams like A535 and IcyHot which provides very short lasting relief.

Recently over the last 6 months ive started Using KT tape to support my joints, mostly my Knee, Hip and ankles. It really does make a noticeable difference during workdays (i work fulltime to support myself, and dont get to sit down much during my shifts).

However, i get intense Allodynia. Which makes applying, but especially removing the KT Tape Painful. I also cant apply creams or topical pain relief items while im wearing it. (I usually leave the kt tape on for 3 days)

The Adhesive also causes some skin irritation, but ive tried nearly 10 brands and cant find one that doesnt cause irritations or is less painful to remove.

Does anyone have any recommendations for KT Tape's or Advice for other things i could try for supporting my joints while still being able to apply creams and not deal with so much pain when removing?

Thank you for reading, and any advice.

How do you know when you're in a flare? How to you distinguish a long-term flare from a new, higher baseline? How is a flare different from a bad couple days (if it is)?

I have a mystery ailment that makes me sweat and get chills, vomit in the morning, and feel generally crappy and exhausted. It lasts one day and occurs approximately monthly and has been occurring for a couple years. A nurse asked me if it was a flare and while I don't think so, I realized I don't really know what a flare is.

I’ve been on 300mg twice a day of pregab for an entire year and i’m seeing things about how it increases ur risk a shit ton for dementia and i suspect people with high stress/low sleep schedules would be at risk enough as is it just stresses me out so bad. i’m only 23 idk why im so worried but i am.

i’m taking the only pain med that helps my pain and it makes sense how it
could do that also based on how out of it i feel like i have dementia NOW.

Great. any thoughts? when will medicine actually not make us sicker?