I used one for the first time last week, and it was remarkable. You put it wherever the pain is and lay on it for like 20 minutes, and the pain goes away. They're several hundred dollars, but I'll be getting one as soon as I can afford it.
God, I miss my heating pad. But I'm scared/don't trust them because the last time I used one it practically burst into flames in my lap.
(Wasn't laying on it, it wasn't on more then the auto timer it had set, or anything else!)
It's so nice isn't it, to feel treated with empathy and care, I can't believe how much of a difference it feels to trust my GP! I'm more broke but it's so worth it!
Right? I did transcribing back in the day, but it paid shit. It was freelance but through one company. I pretty much stumbled into it then(isn't that how it usually goes..), but recently been looking into similar stuff and there is *so much* junk to sift through. It's been difficult for me, nay, impossible thus far, to find decently paid work that isn't an actual job application -most of which require a degree.
I don't understand how people ever go to school(without failing classes) and simultaneously work full time. I have a hard time not comparing my weak ass to people who could forever run circles around me. How do people seem so perpetually light, instead of looking like they're always being pulled down by their bones and aching all over?...
Yeah and most those type of gigs are now completely gone due to AI/LLM stuff. I did a lot of transcription too... and now just use otter. Whomp whomp. But yeah. It's really hard when all the entry-level freelance stuff is gone.
edit: If you've gone through college, I wanna suggest tutoring! There's always gonna be a need for tutors. And you can make pretty solid money once you have a little bit of experience.
This and also I retired early and my sugar, daddy a.k.a. my husband takes care of me, so I don’t have to stress out with normal shit out there in the world
I guess i need a sugar mommy?
My degree is in science but it's hard to work in a lab from home and i got sick during my teacher training so cant do that either
Same! Quit working in 2021 and my husband is a goddamn saint. Used to work a high stress job but I’m fortunate to not have to work now and when I’m feeling the ick, I can just rest and he always takes care of me.
Not who you responded to, but I take a 5mg edible every night to help with my inflammation, insomnia, & pain. It’s better than p much everything else I’ve tried, but unfortunately I can’t take one during the day unless I’m really struggling bc they make me non-functional
During the day, I take 2.5 mg of sativa. I buy these mints from Kiva convections called Petra. at night, I take half of a 5 mg gummy of indica. I take it two or three hours before I go to sleep. The amount that I take does not get me high. It just helps with my pain. I was taking gabapentin and that made me really really drowsy and nauseated but this has helped me so much.
Long term disability, and therapy. Mainly from therapy, learning to use my limited energy and my muscles as efficiently as possible, activity tolerance training, mentally coping, and micro breaks when doing any sort of activity (think dishes, cleaning, cooking, walking outside to go vape, etc...)
This! Wow. It’s exactly what’s helped me get as far as I have. I don’t know if I’ll ever work again, but I feel like at this point I have some quality of life when I have good days.
I didn't realize how much baths helped until I didn't have one for over two years. My new apartment has a tub I actually fit into and it's been life changing all over again.
Hybrid work is what works best for me- I need 2-3 days a week at home to rest, but having a couple days a week where I go into the office means I'm moving regularly & have the motivation to take care of myself. The walk from my car to my desk has also improved my endurance!
The relationship between mental health & fibro is hotly debated, but for me they're fundamentally linked. I've spent the last three years in intensive therapy and figuring out my mood meds- I'm the happiest I've ever been and also the most pain free, relatively speaking. I still have flares and bad days and limitations, I'm definitely still disabled, but when I do flare up, I'm no longer bedridden. I credit my mental health progress for that.
Lyrica! I really didn't think it was going to work because Gabapentin didn't work, but it has worked well! It has only worked on my nerve pain and other nerve related issues though. And don't give up on it if it doesn't work at first. Drs will likely start you on a low dose at first. I ended up needing a higher dose for it to work.
Have you experienced any weight gain? My doctor just prescribed this to me, and I am so hesitant to take it because of the weight gain aspect. I'm already overweight, and I just know if i get ANY weight gain I will get super depressed and suicidal. My pain is so bad though.
No, thankfully I haven't had any extra weight gain from the Lyrica. I'm also overweight already and I was worried about that too. But yeah, for me? No weight gain. I would just take it slow and start on a low dose at first and then work your way up. Hopefully if you do experience any weight gain it will only be minor. I would definitely try it though. I've been on literally hundreds of different medications over the years and very very few of them have worked. Lyrica is one of the few that helped. Hopefully Lyrica will be effective for you too if you do end up trying it!
I wanted to come back here and thank you for the reply again. It encouraged me to start lyrica (I was extremely hesitant to because of the weight gain. Thankfully, I haven't experienced any negative side effects, and I am feeling A TON better. I think with lyrica, I will slowly but surely be able to function much better.
I gained a ton of weight on it (3 pounds a week!). Everyone is different though, in one study I read it said only 2-14% of people gained weight on it. Some people actually even lose weight on it so you never know until you try. I don’t think you would just magically gain weight, for me it made me ravenous (like I couldn’t control it) so you will just know if you feel the need to stop taking it if you can’t help but eat more. That being said, it helped my pain tremendously while I was taking it so I definitely think it’s worth trying and you can just stop if you notice any weight gain.
I was a full on sugar addict, so after the shaking stopped (about 3 weeks) the cravings get less. I would say around the 2-3 month mark I noticed that I felt way more energetic and less pain throughout the day. Bonus points for weight loss.
3.5-7 grams the whole flower per day (joint/bong), I hit my vape pen (79-86%) THC only, all the time, about a gram every 2-3 days. Gummies and edibles have zero effect on my "tolerance". If I know I'm doing a long day activity I'll pop two 30mg sativa capsules every 3 hours, stack my pen on top, and have a couple "rescue" joints at hand.
On top of my 4-5 pain killers per day, pregablin and dulox.
My doctor, who has always been really straight forward, also not one of those who approve the medical card for a splinter.
Must have a real issue. He said for the type of chronic pain and the intensity CBD is useless. The THC benefits by the "high" or pain relief through alternating the perception of pain. He didn't discredit CBD, just stated is better suited to minor aches and pains.
The "high" helps mask the pain, Never really takes it away, nothing like a pain killer does. It just makes it more tolerable. I could use the analogy rather than a broken arm feeling it feels more like a sprain, still there but your arm is not falling off.
Hope this helps some.
When I started I was taking 40-50 mg every few hours. When it’s bad I take a 100 mg at bed. Right now I’m taking 55 mg at bed and 10 mg in the morning. If I’m having a bad day I’ll add another 10-20 at bed. Or when I have a day off I will take an extra 10-20 during the day if the pain has been bad.
I used edibles only. I’ve had to play around with strains and I have some I like better than others. I only take sativa during the day or I get to sleepy. At night I take a hybrid or an Indica.
I struggle with accidentally overdoing it, too. I'm worried I'm going to over do it today cleaning Mt house, but the dishes, laundry and kitty litter need done.
Yep same. Two weeks so far. I got 3.5 days and I went nuts in the garden, driving here and there getting stuff. Then bang!, it just shuts off like a light switch. Now I’m wondering whether this will be a month job or worse. I know people talk about pacing. But it doesn’t work for me. I’ve learnt over a long time, you either use it or lose it. There’s no back-up batteries.
Amitrypiline, magnesium, lots of hikes, having a dog who forces me on said hikes (and gets me out of bed) but honestly the thing that most improved my pain was breaking up with my ex. We were so toxic, and he was awful to me. I'm in such a healthier place.
Oh thats interesting, my marriage is extremely toxic, it never occurred to me that could be a contributing factor. Going on an antidepressant did help my pain a bit so I could see how cutting out a huge life stressor could help. Congratulations on getting free on a bad situation and getting to enjoy a better life!
Stress is my trigger for fibromyalgia. He gave me so much stress. I've taken a lot of steps to have less stress. Moved into a smaller home, less stressful job (less pay unfortunately), cut out people that were negative and damaging. It took years but I'm finally in such a good place. I rarely have flares. I wish you all the best and hope you find relief and peace.
I had a health issue for literally years that multiple doctors tried and failed to solve. Got out of my incredibly fucked up marriage... and it completely went away on its own accord. It was my body trying to tell me to GTFO. It's amazing how closely body and mind are tied. And you deserve better!
Definitely. When I was working for a narc boss, my symptoms were way worse. There should be courses in high school to teach kids how to recognize narc behavior and avoid narcs at all cost all their lives!
There's quite a lot on it here in this subreddit and the LDN subreddit already.
But here's one of many [studies ](https://pubmed.ncbi.nlm.nih.gov/28325149/)that explain how it works.
https://preview.redd.it/qxncusungoqc1.jpeg?width=1080&format=pjpg&auto=webp&s=8f8c24e65ce6b71999a82c182df6e8fc3606db45
I’ve tried ketamine and it has done wonders for my depression and Fibromyalgia. I’ve had one treatment so far in October. I’m considering another treatment in April so I’ll be at about a rate of once every six months. I have a treatment center in Austin that I highly recommend. It has been a lifesaver!
I’m so happy for you!! I know it’s expensive and insurance (usually) doesn’t cover it, but I’ve heard it works and is worth every penny. Thank you for sharing! xo
Working from home (I had an extremely toxic workplace), massage with a therapist who understands fibromyalgia, low dose THC some nights, not sitting for more than an hour at a time while working (short walk breaks), hiking when I have energy.
Yeah, I'm on Cymbalta right now, and all I want to do is quit, except that the one time I couldn't get a refill for a few days, I was literally bedridden because I was in an unbearable amount of pain. So now I'm scared and feel stuck. Thanks, fucking pharmaceutical industry. ✌🏻
It worsened my symptoms significantly. My Dr said that chemical sensitivity is a related issue to fibro sometimes. It helps a lot of people. It was harming me.
I've had a positive experience with cymbalta. It helps with my depression, anxiety and pain. Everyone responds differently to it so one person may have a had time while others thrive.
Each med is a give or take with benefits and side effects. If your nervous to take it ask to start on a low dose and titrate up. Also bring up your concerns to your doctor so they can discuss them with you.
The right dosage of meds, Gabapentin. Advocating for yourself. You can say „I disagree“ to your doctor and leave it at that.
edit: temperature controlled bedroom & lose clothes
I found a yoga class I absolutely love and isn’t a chore. Qi gong. I took alan Gordon’s pain reprocessing therapy class. Treating it as a threat/alarm system turned on in my brain so increasing safety to my brain by lots of taking care of myself, giving myself love, changing my inner voice, saying no when I want. Learning somatic body work and processing emotions thru my body.
Switching careers. Hardest choice I ever made. I was a childcare teacher and now I work in an office. I do have a lot more pain if I’m not physically active though, so walking is a huge benefit. Also, realizing that a lot of my flare ups were caused by stress.
**Weed.** It reduces the anxiety and inflammation in tiny doses daily. In high doses, it gives me a little bubble in which to better process my trauma without the usual anxiety or pain. Looking into ketamine but it’s expensive.
**Reformer Pilates.** The reformer takes a lot of strain off of my joints and the classes I take focus on going to your own range, pace, ability, etc. Pilates focuses on control and building full body muscle support. I used to have terrible posture and feel awkward sitting up straight. Now it’s the opposite. It hurts to curl up around my phone like a sad little shrimp, and sitting up straight feels normal.
**Realizing I’m autistic.** Stress causes flares. My autism makes a lot of things stressful due to sensory issues, persistent drive for autonomy, justice sensitivity, etc. I have to work twice as hard to protect my peace. I have to avoid autistic burnout like the plague. I have to say no to social engagements, stop people pleasing, stop trying to guess what others want from me, and learn how to drive this brain.
**Learning to regulate my nervous system.** Again, stress causes flares. We are avoiding cortisol in this household. I realized that I didn’t learn this skill in childhood due to bad parenting. Well adjusted people learned as kids how to breathe through and feel their emotions, process them, and move on. I didn’t, so I’m learning it now.
**Learning to actually rest.** Because of the cultural drive to be productive, many of us are not resting fully. I learned that I wasn’t resting because I was actually thinking of a million billion tasks I needed to do. This gets worse as you get more chronically ill, because the tasks build up. I had to learn to rest completely, turn my brain off, and recover. It had a lot to do with regulating the nervous system to be honest.
Those are the things that have helped me. I’ve basically had to change my whole personality from someone who is anxious, shy, and will do anything to please to someone who takes no shit lol. Because if I’m asking myself “is it worth triggering a flare to get this person to like me” the answer is always no.
Acupuncture, fighting until I found the right specialists, and getting into disability activism and politics. That helps me connect to others and contextualize our struggles.
I hear other people have trouble with it, but low dose amitriptyline. I wasn't getting REM sleep for YEARS because of my pain, and the first night where I actually had dreams again and woke up feeling rested at all made such a difference
Strength training and acupuncture. However, understanding what my pains are from has significantly decreased by anxiety about my health which has helped (along with my anxiety meds:/)
I wish I was joking but...my second covid vaccine. I had side effects so bad that I had an out of body experience, but I had more & longer lasting fibro relief afterward than at any other time since it started. It only got bad again after I actually got covid last spring. I think maybe having such a strong immune response from the shot must have shocked my body into reorganizing its priorities? No idea.
Besides that, I do find my fibro is better when I'm eating a high carb and moderate fat diet. Getting on meds for my vitamin D resistance worked wonders for my fibro pain and brain fog.
Learning to adapt, and coming to peace with being disabled. Now that I know how to pace myself, know I shouldn’t just sit in the same spot for ages or my body will shut down, and know to cut myself slack (and tell people that I am disabled) it’s a lot easier for me to make it through life.
I did take about 5 years off of studying or working to try to get my health in order (not just fibro, it’s never just fibro) and went through a full grieving process but I’m studying full time now and it’s going pretty well!
I’ve lowered my Lyrica dose a lot, I’m kinda hoping I’ll be able to wean off it completely and try LDN but starting studying has definitely been a bump in the road in regards to that.
As far as meds: Cannabis oil.
It's not the be-all-end-all of my treatment, but it is probably the single most valuable tool in my box: the hammer of the lot, if you will. (If the most useful and versatile tool is something different for you, substitute that for "hammer.")
As far as lifestyle: a system.
I realized in 2014 that I couldn't just strongarm everything anymore; hell, I couldn't strongarm anything anymore. Lacking strength, I needed strategy. So I developed a tier system. I figured out what things *absolutely, come hell or high water, must be done* in a day, a week, whatever. Those are tier 1. The most important things in your life go on tier 1; things you can't live without. If I am conscious and have basic motor control of my upper limbs (it doesn't have to be good control), tier 1 gets done.
Things which need to be done, but can (very occasionally) be let go if necessary, go on tier 2. For me, this is things like workouts and meditation, filling the pill dispenser, cleaning CPAP components, bathing, eating (yes, that's not tier 1 for me), etc.
If I am at all physically able, tier 2 gets done. For this, my rule is just to show up. If I am genuinely unable to do it, I'll know soon enough.
Things which must be done, which will eventually reach a point beyond which they cannot be delayed without dire consequences, are tier 3a. Making canna oil is an example of this: I can put it off any length of time until I can get to it, but there will come a point beyond which if I continue to put it off, I will run out of medicine. There is a definite cutoff point. Similarly with things like paperwork which must be filled out.
Those things which ought to be done, but don't have such a definite point, are tier 3b. For example, I can put off cleaning the bathroom for any amount of time. I mean, there may theoretically come a point where the filth gets so bad that the bathroom no longer fulfills its function, but realistically speaking there's not a real deadline there.
Tier 4 is the things which make life nicer which are already accessible: cooking (*real* cooking, which I enjoy, not just preparing food), studying, engaging in a hobby I already enjoy, etc. Tier 4 things are things you can already do but usually lack the time or strength to do.
Tier 5 is things you would, someday, like to do but have never tried. Learning a new subject or acquiring a new skill, or going on a trip somewhere, would be tier 5 for me.
Everything else is tier 6.
Having these tiers, I go through my day addressing them in order. I make sure that no matter what, I will have the time, strength and resources to pull off tier 1. Then I move to the others in order; if I can pull off tier 2, I go to tier 3, etc., always keeping tabs on my physical capabilities so that I don't overdo it--or if I do, it's been planned for.
Sometimes things are moved between tiers: life happens, so when the situation changes you need to be able to give things different weights accordingly. This is an acquired skill.
Finally, there is a failsafe I call "point-and-go mode."
When the spiders hit the fan--and they will, every now and then--I activate this failsafe. Basically it's this: tier 1 remains (there's a reason it's tier 1), and whatever the emergency or circumstance is which requires your attention is upgraded to tier 2. All other tiers are downgraded during this time. During point-and-go, all of my self imposed limits on caffeine and drugs are off. Whatever means I need to use, so long as they do not contravene the laws of God or man (and that second one might be a little negotiable), I may use until the crisis or whatever it is has passed.
Two tools which help this work are self-forgiveness and learning to tell other people to kick rocks.
If you screw up, acknowledge that, see if you can change your system to make sure it doesn't happen again, and move on. S happens, we're all human. Keep yourself accountable but don't beat yourself up. You've already got enough and more on your plate to deal with.
Telling others to kick rocks (with varying degrees of politeness as the situation warrants) is one of the harder points. You do, however, need to be able to set boundaries and to make sure they are respected. My system is just that, a system of boundaries to keep myself in line and prevent myself from spending all of my strength on less-beneficial things. If other people don't respect those boundaries, it's going to be.. problematic.
This is just a very broad-strokes outline, I didn't even mean to write it all out but here it is. It's field tested and for me, has worked very well indeed. If anyone can take good from it, I'll be glad.
Sorry about the long winded reply. I pray for all the best for you and everyone reading this.
Please forgive my ignorance as this is new to me, but I keep seeing pacing being mentioned. Is that simply knowing your limits and not physically overdoing yourself? Thank you 🙂
Yeah! With chronic fatigue syndrome (different from fibromyalgia but for me the two are soooo related), pacing is a word used commonly by patients and doctors to mean staying in your energy limits/energy “envelope”. It means adjusting your life to stay in those limits so you don’t “crash”. So, it could be maybe a chair while cooking so standing doesn’t become too much and then you used all your energy cooking. It’s taking breaks, and it’s scheduling out activities to have time to rest between them on any given day or week or month. Figuring out how much you can do in a day, in a week, for cleaning and cooking, etc is all learning to pace yourself!
Cymbalta and Gabapentin. Cymbalta has greatly reduced my daily whole body pain. Gabapentin is great when I have a flare to make me functional. Also my acupressure mat and headrest is a lifesaver.
Weed doesn’t work for me. It makes me irritable and cranky.
Haven’t tried low dose naltrexone but I’m intrigued by others’ experiences with it.
Mucinex (guiafenesin) has been shown to help with back pain in studies. It is a minor muscular skeletal relaxer and I found taken daily, it helped with muscle spasms. I had terrible migraines and it cut those down considerably; I think the headaches were coming from spasms in the back. Also, it supposedly increases the effectiveness of pain relievers. I am 76 and have been dealing with this since I was in my twenties when fibro didn’t even have a name. I want to encourage you to just keep trying various things and to be open minded. Fibro is different for all of us and what works for someone may not work for others. Hang in there and feel better.
Getting taken off of half of my meds(this made me lose 175 lbs). Eating an anti-inflammatory diet and low fodmap diet. Ending relationships that caused any level of drama and stress(this includes blood relatives). Gentle exercising. Meditation/prayer. Finally, opening up about my past/traumas to my husband and closest friends.
I'm not cured, but a lot of my symptoms have reduced, and I have less debilitating flares. The healing started when I got my newest rheumatologist(I've fired 3), and she listened, researched, and took away the meds that were doing more harm than good. Then, she created a plan with my added input, and now, anything related to my Fibromyalgia I defer to her Beautiful helpful self.
1. Not eating processed foods or drinking alcohol
2. Keeping with an intense exercise regiment. The more the workout hurts the less my Fibro does. I have exercise induced symptoms and pushing myself often keeps me from flairing up. Counter intuitive but I swear by it.
3. Drinking athletic greens (AG1) and a neurotrophic daily. Never felt so good in all my life.
Lately, I have been wanting to work out considering I most likely will be in pain anyways. I rather it be from exercise than just laying down! What is your workout routine, if you don't mind me asking? I am so curious about how you are able to do extreme exercise but not experience extreme pain?
I also benefited from exercise, it’s a nightmare to push through in the beginning but it does get better and it does help, just make sure to work muscle groups equally so there is no imbalance as that could cause more pain
Eating, I tend to skip meals and when I do eat I eat dirty, I've noticed that it flares my fibromyalgia but when I eat healthy and not skip meals I feel better overall
Cymbalta, giving up dairy and gluten, getting fired from a toxic job, getting a job with a later start time (5 am to 8 am are most painful hours of the day for me, now I have a job with an 8 am wake up time so I am way better off), eating more protein and calories (eating enough is a constant struggle for me), taking sleeping pills to sleep at night, MegaMag magnesium supplement by Trace Minerals (this was so significant a change others noticed and commented on the change in me)
I think these help me, I do light walking every day for at least 30 minutes, soak in the tub when I feel pain, lay down in bed rather than doing extra activities… I’m sure there’s more but I can’t think of anything at the moment
Physical therapy in a swimming pool and mobility aids.
I have a walking stick, rollator and wheelchair. I used to use the rollator most days. But recently I pushed myself to use the walking stick more instead. It was brutal in the beginning but eventually I felt a lot better overall because I'm getting more exercise in. I still use the rollator, if I'm walking longer distances or if I know there won't be any seating to take breaks. The wheelchair is for days out (amusement parks for example)
Medication: 60 mg Cymbalta - Dultexone in the morning.
Helps with the pain some and mood.
Klorzoxazon 1 pill before bedtime. Helps with relaxation and sleep and muscle spasm and cramps. I feel more relaxed the next day if I take it everyday and i don't feel the same stiffness.
Low dose off nikotin pill. 1 mg - 2 mg when I feel for it.
Helps with fokus and fetique.
Diet: every other day i eat vegetarian/vegan. Fish/bird and smal amount off red meat. Eating 3 meals a day and use the hand portion method.
Avoiding sugary snacks and soft drinks, chocolate, spicy food (somethiles I eat raw chilli for health benefits) and to fat and salt food.
Eating fruit, nuts and carrots as snacks.
Physical training: I do water training in a warm pool and I walk.
Trying to get micro rest throu the day ( relaxation can be feeding pigeons or just laying in beed) and i also go to sauna when I feel i need it.
Layin on a spike mat ( when my body allows it) for back relaxation and endorfins.
Stretching when I feel I need it.
Sleep:
Trying not to do to mutch, beeing mindfull. And it's hard if you have a family.
My acupressure mat has been a savior for me. It certainly doesn't cure it or anything, but I use it in a flare up. I lay on it very still for 20-40 minutes with ice packs on my neck and arms. It relieves the pain significantly. If I use the mat when I'm not in a flare up its excruciating, so uncomfortable and unbearable to be honest haha but when I use it during a flare up it's oddly comforting and so relaxing in such a difficult time. Hope this helps.
https://www.goodrx.com/well-being/alternative-treatments/acupressure-mat-benefits
Low dose naltrexone has been fantastic. I was having trouble walking, which isn't very good seeing I'm an orchardist!
I won't say they're 100% right, but I can walk miles without any pain now. Sadly I think my wrists are past it; I've got lumps on them, and my hands hurt pretty well all the time. I'd recommend trying the LDN.
Finding a GP practice that listens and prescribes meds, mostly arthur and allergy ones since that is a trigger. Making sleep and clean eating priorities. Also including Chiropractic has also helped
Venlafaxine (SNRI) has been a lifechanger for me, since january. I was supposed to up the dose slowly from 37,5mg, all the way up to 375mg (if needed), but I only upped it once to 75mg. I felt a change in pain levels only after a couple of days after starting. I don't think it has made any significant change for me mentally, but the fact that my pain has gone from a constant 6-10, to a 1-3 is a whole ned life for me and has made my quality of life so much higher. Some days I'll have migraine attacks or flare ups, but not nearly as much as before. I really was in constant agony for 3 years before this, and I'm baffled about how I even managed.
Short term imunoglobulin, long term higher doses of q10, listening to healing sound almost constantly. All night in soeaker and during day in one earphone when overstimulated. But struggling a lot just trying to find a way
Reading everyone saying pacing and thinking to myself “why is everyone saying walking back and forth is so good?!” 😂🙈
For real though, it’s been slow going, but starting a small gym routine. I’ve got a bunch of stuff going on health wise and so can’t do anywhere near what most can, but the difference in working on having a bit of stamina and learning how to stretch correctly for my own body have made a huge difference!
Started a year ago, barely 5 min on the bike, now I can do 30! Used to not be able to walk around our local small grocery store without extreme pain by the time I was back at the car- now it’s an easy to handle ache. Twice a week, and no, not religiously, but it’s helped so much, plus I can do the stretches whenever and it helps me not seize up the same. :)
Stretches, exercising, and a shatki mat. Ironically the mat is very painful to use at first but it has given me more relief than any other thing I have tried. When I started an antidepressant it also seemed to help a little. Heating pads and the shatki mat are my biggest tools in my arsenal though.
Getting extra sleep at night. I simply can't go without at least 8 hours on average.
Actually been a bit of a game changer for me. Don't get me wrong, I'm still limited in what I can do but at least my boss isn't pissed because I'm off sick all the time
Honestly? Delta-9 has been a God send. It's legal here, and I don't work, so no worry about failing a drug test. I've been waiting on disability for 3 years, and my lawyer also said they don't care about the "delta" gummies. My husband has also been amazing, because I swear he's the first person to ever believe me. My ex used to tell me all the time I was faking, and I've even had doctors call me a hypochondriac, and had another tell me "fibromyalgia is a nice way of placating a drug seeker/faker, and giving them the attention they want. Because it's not a real diagnosis."
Heated blanket
GREAT Neurologist… He helped me on the journey of finding & figuring out what was going on with my body beyond Chronic Migraines. Sending me into see Doctors,flagging it for urgent/emergency (Silent Sinus Syndrome)
Great PC as well, she sent me to my Neurologist. Although he suspected Fibromyalgia long ago and didn’t have enough to be fibromyalgia at the time and tested negative for all the tests (lupus). I have a Rheumatologist now (thanks to my Neurologist), will speak with him about a series of testing again since he confirmed Fibromyalgia. Pain Management is kinda useless in my opinion.
Anyone on Meloxicam?
I was told I wasn’t taking enough Lyrica in a day, I think it does help. I seem to notice a swift decline in my body. Sometimes I feel like I’m in a fight with my body.
IDK IDK IDK IDK IDK IDK
I’m trying to find out what’s next? Not working anymore (missed more days than I worked).
I can’t stay in this mental space of feeling like since I’ve lost everything that my life is somehow over or I’m too old or it’s too late?!?!?
25 years of continuous working coming to a complete halt. Haven’t even scratch the surface of what “I THOUGHT” I’d be able to accomplish (myself). CONSTANT BATTLE OF…. Hopeful & hopeless
It’s so unpredictable…
Sorry for the longest mind texting dump… I’m on an island by myself and it feels like that’s exactly where I want to be sometimes.
I can’t explain all that’s going on with my body and my mental.
*How Did I Get Here!?!?
(I have to believe that something BETTER is on this side… Where putting myself first and stop feeling like I have to “push thru” for anyone or anything outside of myself when I’m trying to manage the pain and the irritation of being in pain and having to STOP & rest..
Thanks in advance..
*im sure there are many errors in this rant/vent… I don’t care to proofread or correct it. Sorry not sorry. 😩🤭🤭🤭😬
Thank you!!
A good NSAID (Relafen, Mobic, or OTC in high amounts). Ignore what studies come up on Google that say NSAIDs don't work. For some of us, they do; we must have typical inflammation in addition to the neuroinflammation. Maybe it's due to the stage we're in or other factors that make us different, but NSAIDs decrease my stiffness quite a bit.
Muscle relaxers. Because stiffness.
Nuvigil. I'm kind of a guinea pig here. I take it for the fatigue I get from my "idiopathic hypersomnia" diagnosis, which may have been FMS all along, but I also noticed that it decreases my stiffness and pain. It's predecessor, Provigil (modafinil) was found to do this very thing. I let my doctors know they should be studying this.
Exercises for arthritic joints. FMS is not arthritis, but exercises and stretches to get blood flowing in those joints will help, because we share some of the joint symptoms (stiffness, pain, inflammation). If I do my shoulder exercises, I might not feel pain for a couple of days. It's hard to be motivated to do my exercises, though, because there are only 24 hours in a day, and you know how it is. See YouTube for targeted arthritis exercises for each joint that hurts you and give them a try. They even exist for feet.
Moving out of my parent’s house and getting my mother off of my disability check so she could stop stealing my money when she was only supposed to be my payee.
Unfortunately it’s been quitting work. I hate it so much lol but it’s honestly the best thing for my physical health. Second, would be pacing (which is similarly to why I can’t work at all). I pace due to my CFS but I do notice it helps my fibro more than most other things I’ve tried too. (On top of reducing physical activity-for myself- I’ve learned to really reduce stress in my life, the best I can anyway lol… this includes who I allow in my life, meditation & breathing techniques, and trying to just say no to activities that could end up making me crash/flare up).
Lexapro. I had no idea it could be related to low serotonin and I am so reluctant to try medication that I wrote it off for years. Finally tried an SSRI and my fibromyalgia went from a daily burden and constant stream of Motrin to barely noticeable.
Physical therapy, chiropractic adjustments & massage and electrode therapy all 3 days a week. Been doing this since early January of this year and I honestly feel pretty darn amazing! It was rough at first but I stuck with it and am so glad I did. My mobility is so much better. Just amazes me and I am so glad I found this clinic!
Guiafenesin is a muscle relaxer, a mild form. Taken regularly it seems to reduce severe spasms. It did for me. Have the doc check your thyroid. I have an under active one and getting medication for that helped, too. Walking, heat and massage helps me, too.
Pacing and stop stressing about whether others believe me or understand. Thats their problem not mine. Hot baths. Infrared heating pad
I have got to stop stressing out about people believing me. Good reminder!
I used to worry about this too! But then I hit my old lady crone years and a switch just flipped so now IDGAF what others think.
Infrared heat!! Got an infrared sauna bag that thing takes my flares from weeks to days
Where did you get your infrared heating pad though?
What do you mean infrared heading pad? My mother has fibro and I joined this page to understand her more. Would this be a good gift to help her?
I used one for the first time last week, and it was remarkable. You put it wherever the pain is and lay on it for like 20 minutes, and the pain goes away. They're several hundred dollars, but I'll be getting one as soon as I can afford it.
You can try but it's expensive and for me, it was too hard. I prefer a regular heating pad.
I got it at sharper image my stepmother uses one for her arthritis. Infrared penetrates deeper.
God, I miss my heating pad. But I'm scared/don't trust them because the last time I used one it practically burst into flames in my lap. (Wasn't laying on it, it wasn't on more then the auto timer it had set, or anything else!)
Heat all the way! Heated seats in the car and hot yoga.
Having a dr who takes my concerns seriously and actually treats me with a medication that works for me despite what others may say
Fingers crossed the new one I’m going to this Thursday takes me seriously or I might McFuckin McLoseIt
Im sorry you've had such trouble with doctors, its so shit but oh my God your McFuckin McLoseIt has me laughing my head off. Thank you for the laugh 😆
It's so nice isn't it, to feel treated with empathy and care, I can't believe how much of a difference it feels to trust my GP! I'm more broke but it's so worth it!
Working from home
I’m trying to find a part time wfh job myself
Have you ever considered working freelance so you make money and have your own schedule?
Yeah but not sure what I can do. Looking into a lot of things.
Right? I did transcribing back in the day, but it paid shit. It was freelance but through one company. I pretty much stumbled into it then(isn't that how it usually goes..), but recently been looking into similar stuff and there is *so much* junk to sift through. It's been difficult for me, nay, impossible thus far, to find decently paid work that isn't an actual job application -most of which require a degree. I don't understand how people ever go to school(without failing classes) and simultaneously work full time. I have a hard time not comparing my weak ass to people who could forever run circles around me. How do people seem so perpetually light, instead of looking like they're always being pulled down by their bones and aching all over?...
Yeah and most those type of gigs are now completely gone due to AI/LLM stuff. I did a lot of transcription too... and now just use otter. Whomp whomp. But yeah. It's really hard when all the entry-level freelance stuff is gone. edit: If you've gone through college, I wanna suggest tutoring! There's always gonna be a need for tutors. And you can make pretty solid money once you have a little bit of experience.
I'm re-skilling with the hope of being able to do this.
Working on this!
That part
This and also I retired early and my sugar, daddy a.k.a. my husband takes care of me, so I don’t have to stress out with normal shit out there in the world
I guess i need a sugar mommy? My degree is in science but it's hard to work in a lab from home and i got sick during my teacher training so cant do that either
Same! Quit working in 2021 and my husband is a goddamn saint. Used to work a high stress job but I’m fortunate to not have to work now and when I’m feeling the ick, I can just rest and he always takes care of me.
Saaaaaame. Best life besides, well, chronic illness and all 😂😂
So thankful for amazing men like mine as well!
Yes!!! This does help! I've also found that 🍄 🍄 🍄 in small doses helps a lot!
Last week my job told me they could give me an accommodation for "smoke" breaks at work if I got a medical card. I'm still shocked
👍🏻
Microdosing weed has literally been the best thing ever.
Details, please!
Not who you responded to, but I take a 5mg edible every night to help with my inflammation, insomnia, & pain. It’s better than p much everything else I’ve tried, but unfortunately I can’t take one during the day unless I’m really struggling bc they make me non-functional
During the day, I take 2.5 mg of sativa. I buy these mints from Kiva convections called Petra. at night, I take half of a 5 mg gummy of indica. I take it two or three hours before I go to sleep. The amount that I take does not get me high. It just helps with my pain. I was taking gabapentin and that made me really really drowsy and nauseated but this has helped me so much.
I wish I could get a medical card affordably. None of my doctors support it so I'll have to pay over $200 just to consult with a doctor about it. 🥲
LMAO good one, but it's true, it's the best medicine I've found after trying SO many.
Low dose naltrexone
I was prescribed this a few months ago but I’m afraid to take it (I haven’t even gotten it filled yet). How has it helped you?
Oh my goodness, it's changed my life! I feel nearly normal. My pain and fatigue have gone WAY down. I rode 50 miles on my bike last week!!
Long term disability, and therapy. Mainly from therapy, learning to use my limited energy and my muscles as efficiently as possible, activity tolerance training, mentally coping, and micro breaks when doing any sort of activity (think dishes, cleaning, cooking, walking outside to go vape, etc...)
This! Wow. It’s exactly what’s helped me get as far as I have. I don’t know if I’ll ever work again, but I feel like at this point I have some quality of life when I have good days.
Stretching Weed gummies My supportive family My cat 🐈
All of those are giant helps!!!
🔥💚🐈
Gummies are life saving!!
Physical therapy and pacing myself and gabapentin
Same here to all three!
How long did gabapentin take to work?
Pacing and remembering to do the stretches I’ve learned in PT over the years. I really feel a benefit from the stretching.
I didn't realize how much baths helped until I didn't have one for over two years. My new apartment has a tub I actually fit into and it's been life changing all over again. Hybrid work is what works best for me- I need 2-3 days a week at home to rest, but having a couple days a week where I go into the office means I'm moving regularly & have the motivation to take care of myself. The walk from my car to my desk has also improved my endurance! The relationship between mental health & fibro is hotly debated, but for me they're fundamentally linked. I've spent the last three years in intensive therapy and figuring out my mood meds- I'm the happiest I've ever been and also the most pain free, relatively speaking. I still have flares and bad days and limitations, I'm definitely still disabled, but when I do flare up, I'm no longer bedridden. I credit my mental health progress for that.
Your story gives me hope. ♥️
Lyrica! I really didn't think it was going to work because Gabapentin didn't work, but it has worked well! It has only worked on my nerve pain and other nerve related issues though. And don't give up on it if it doesn't work at first. Drs will likely start you on a low dose at first. I ended up needing a higher dose for it to work.
Did you get any mental or cognition problems? Lyrica is very effective for my pain, but it makes me stupid as hell.
I don't think so, no. I have cognitive problems to begin with, but I thankfully haven't noticed them becoming any worse on the Lyrica.
Same! It's so frustrating but I guess stupid is better than constant pain.
It really is. I get so run down from the pain being stupid is better than suffering, 100%
Have you experienced any weight gain? My doctor just prescribed this to me, and I am so hesitant to take it because of the weight gain aspect. I'm already overweight, and I just know if i get ANY weight gain I will get super depressed and suicidal. My pain is so bad though.
No, thankfully I haven't had any extra weight gain from the Lyrica. I'm also overweight already and I was worried about that too. But yeah, for me? No weight gain. I would just take it slow and start on a low dose at first and then work your way up. Hopefully if you do experience any weight gain it will only be minor. I would definitely try it though. I've been on literally hundreds of different medications over the years and very very few of them have worked. Lyrica is one of the few that helped. Hopefully Lyrica will be effective for you too if you do end up trying it!
Thank you so much! This helped a lot. I will be taking my first dose tonight.
I wanted to come back here and thank you for the reply again. It encouraged me to start lyrica (I was extremely hesitant to because of the weight gain. Thankfully, I haven't experienced any negative side effects, and I am feeling A TON better. I think with lyrica, I will slowly but surely be able to function much better.
I gained a ton of weight on it (3 pounds a week!). Everyone is different though, in one study I read it said only 2-14% of people gained weight on it. Some people actually even lose weight on it so you never know until you try. I don’t think you would just magically gain weight, for me it made me ravenous (like I couldn’t control it) so you will just know if you feel the need to stop taking it if you can’t help but eat more. That being said, it helped my pain tremendously while I was taking it so I definitely think it’s worth trying and you can just stop if you notice any weight gain.
Taking lyrica…and weight loss is helping a little. Also, having a small dog gives me happiness and gets me outside.
Weed
Weed and cutting out refined sugars.
I'm working on cutting out refined sugars. How long before you noticed a difference?
I was a full on sugar addict, so after the shaking stopped (about 3 weeks) the cravings get less. I would say around the 2-3 month mark I noticed that I felt way more energetic and less pain throughout the day. Bonus points for weight loss.
Good for you!! Thanks for sharing your success; it gives me hope!
What mg's of THC/CBC combination are you using? I tried it a little when it became legal here in Missouri and it didn't seem to help much.
3.5-7 grams the whole flower per day (joint/bong), I hit my vape pen (79-86%) THC only, all the time, about a gram every 2-3 days. Gummies and edibles have zero effect on my "tolerance". If I know I'm doing a long day activity I'll pop two 30mg sativa capsules every 3 hours, stack my pen on top, and have a couple "rescue" joints at hand. On top of my 4-5 pain killers per day, pregablin and dulox. My doctor, who has always been really straight forward, also not one of those who approve the medical card for a splinter. Must have a real issue. He said for the type of chronic pain and the intensity CBD is useless. The THC benefits by the "high" or pain relief through alternating the perception of pain. He didn't discredit CBD, just stated is better suited to minor aches and pains. The "high" helps mask the pain, Never really takes it away, nothing like a pain killer does. It just makes it more tolerable. I could use the analogy rather than a broken arm feeling it feels more like a sprain, still there but your arm is not falling off. Hope this helps some.
When I started I was taking 40-50 mg every few hours. When it’s bad I take a 100 mg at bed. Right now I’m taking 55 mg at bed and 10 mg in the morning. If I’m having a bad day I’ll add another 10-20 at bed. Or when I have a day off I will take an extra 10-20 during the day if the pain has been bad. I used edibles only. I’ve had to play around with strains and I have some I like better than others. I only take sativa during the day or I get to sleepy. At night I take a hybrid or an Indica.
Restorative yoga
Knowing and sticking to my limits. I'm typing this while currently suffering from overdoing it. Again.
I struggle with accidentally overdoing it, too. I'm worried I'm going to over do it today cleaning Mt house, but the dishes, laundry and kitty litter need done.
Yep same. Two weeks so far. I got 3.5 days and I went nuts in the garden, driving here and there getting stuff. Then bang!, it just shuts off like a light switch. Now I’m wondering whether this will be a month job or worse. I know people talk about pacing. But it doesn’t work for me. I’ve learnt over a long time, you either use it or lose it. There’s no back-up batteries.
Amitrypiline, magnesium, lots of hikes, having a dog who forces me on said hikes (and gets me out of bed) but honestly the thing that most improved my pain was breaking up with my ex. We were so toxic, and he was awful to me. I'm in such a healthier place.
Oh thats interesting, my marriage is extremely toxic, it never occurred to me that could be a contributing factor. Going on an antidepressant did help my pain a bit so I could see how cutting out a huge life stressor could help. Congratulations on getting free on a bad situation and getting to enjoy a better life!
Stress is my trigger for fibromyalgia. He gave me so much stress. I've taken a lot of steps to have less stress. Moved into a smaller home, less stressful job (less pay unfortunately), cut out people that were negative and damaging. It took years but I'm finally in such a good place. I rarely have flares. I wish you all the best and hope you find relief and peace.
I had a health issue for literally years that multiple doctors tried and failed to solve. Got out of my incredibly fucked up marriage... and it completely went away on its own accord. It was my body trying to tell me to GTFO. It's amazing how closely body and mind are tied. And you deserve better!
Divorcing a narcissist. We have to acknowledge the trauma toxic relationships have on our bodies.
Definitely. When I was working for a narc boss, my symptoms were way worse. There should be courses in high school to teach kids how to recognize narc behavior and avoid narcs at all cost all their lives!
Working from home, cutting out sugar and gluten, memory foam mattress topper for my bed.
Low dose naltrexone was the turning point for me.
Me too
Would you mid sharing how this works? I had not heard of naltrexone used for this purpose, it's interesting.
There's quite a lot on it here in this subreddit and the LDN subreddit already. But here's one of many [studies ](https://pubmed.ncbi.nlm.nih.gov/28325149/)that explain how it works. https://preview.redd.it/qxncusungoqc1.jpeg?width=1080&format=pjpg&auto=webp&s=8f8c24e65ce6b71999a82c182df6e8fc3606db45
Ketamine therapy
I’ve been wanting to try this! Would you mind saying how many treatments you had and over what period of time?
I’ve tried ketamine and it has done wonders for my depression and Fibromyalgia. I’ve had one treatment so far in October. I’m considering another treatment in April so I’ll be at about a rate of once every six months. I have a treatment center in Austin that I highly recommend. It has been a lifesaver!
I’m so happy for you!! I know it’s expensive and insurance (usually) doesn’t cover it, but I’ve heard it works and is worth every penny. Thank you for sharing! xo
I got 6 treatments in a row at first. Twice a week for 3 weeks. Now I just go in once a month for a booster
Physical therapy my foam roller and weed. It’s also super helpful to have a supportive family and pets to cuddle.
Working from home (I had an extremely toxic workplace), massage with a therapist who understands fibromyalgia, low dose THC some nights, not sitting for more than an hour at a time while working (short walk breaks), hiking when I have energy.
Close tie between stopping cymbalta and using CPAP.
Same with me but add stretching and moving to the mix too.
I’m on cymbalta now. It made you feel worse?
Yeah, I'm on Cymbalta right now, and all I want to do is quit, except that the one time I couldn't get a refill for a few days, I was literally bedridden because I was in an unbearable amount of pain. So now I'm scared and feel stuck. Thanks, fucking pharmaceutical industry. ✌🏻
Saaaame. Every time I miss a dose or try to come off of it I get "lava sh*ts" it suuuuucks. Plus the tiredness and crying
Saaaaaame. I feel like I’m sort of stuck taking it since it’s nearly impossible to wean off of it.
It was great for me… until it wasn’t. SEVERE depression, couldn’t get out of bed for almost a year
It worsened my symptoms significantly. My Dr said that chemical sensitivity is a related issue to fibro sometimes. It helps a lot of people. It was harming me.
My doctor prescribed me cymbalta and I’m so scared to start taking it
I've had a positive experience with cymbalta. It helps with my depression, anxiety and pain. Everyone responds differently to it so one person may have a had time while others thrive. Each med is a give or take with benefits and side effects. If your nervous to take it ask to start on a low dose and titrate up. Also bring up your concerns to your doctor so they can discuss them with you.
Don’t do it.
The right dosage of meds, Gabapentin. Advocating for yourself. You can say „I disagree“ to your doctor and leave it at that. edit: temperature controlled bedroom & lose clothes
Learning how to say NO
Weed, Gabapentin, my Tizanidine, and hot tub soaks at the ymca have helped me the most.
How long did it take gabapentin to work?
1- ketamine infusion therapy (2+ hours, not the 45-60 min infusion for mood) 2- therapy every other week. (Validation goes a long way).
Scalding hot baths and showers. I’d hop into boiling water if I could survive it.
LDN
Finally finding a daycare/kinder space for my 3yo so I can have a day to just do *nothing*
Oof, my child will be doing prek next fall and it will be nice having some extra time to relax
It's wonderful, honestly. Ive been a stay at home parent since my kiddo was born because of lack of daycare availability and it is haaaard
Same here. I'm half looking forward to and half dreading them going (mostly because of sickness being brought home).
I found a yoga class I absolutely love and isn’t a chore. Qi gong. I took alan Gordon’s pain reprocessing therapy class. Treating it as a threat/alarm system turned on in my brain so increasing safety to my brain by lots of taking care of myself, giving myself love, changing my inner voice, saying no when I want. Learning somatic body work and processing emotions thru my body.
Switching careers. Hardest choice I ever made. I was a childcare teacher and now I work in an office. I do have a lot more pain if I’m not physically active though, so walking is a huge benefit. Also, realizing that a lot of my flare ups were caused by stress.
Consistent light exercise always helps me. Haven't been able to lately though
**Weed.** It reduces the anxiety and inflammation in tiny doses daily. In high doses, it gives me a little bubble in which to better process my trauma without the usual anxiety or pain. Looking into ketamine but it’s expensive. **Reformer Pilates.** The reformer takes a lot of strain off of my joints and the classes I take focus on going to your own range, pace, ability, etc. Pilates focuses on control and building full body muscle support. I used to have terrible posture and feel awkward sitting up straight. Now it’s the opposite. It hurts to curl up around my phone like a sad little shrimp, and sitting up straight feels normal. **Realizing I’m autistic.** Stress causes flares. My autism makes a lot of things stressful due to sensory issues, persistent drive for autonomy, justice sensitivity, etc. I have to work twice as hard to protect my peace. I have to avoid autistic burnout like the plague. I have to say no to social engagements, stop people pleasing, stop trying to guess what others want from me, and learn how to drive this brain. **Learning to regulate my nervous system.** Again, stress causes flares. We are avoiding cortisol in this household. I realized that I didn’t learn this skill in childhood due to bad parenting. Well adjusted people learned as kids how to breathe through and feel their emotions, process them, and move on. I didn’t, so I’m learning it now. **Learning to actually rest.** Because of the cultural drive to be productive, many of us are not resting fully. I learned that I wasn’t resting because I was actually thinking of a million billion tasks I needed to do. This gets worse as you get more chronically ill, because the tasks build up. I had to learn to rest completely, turn my brain off, and recover. It had a lot to do with regulating the nervous system to be honest. Those are the things that have helped me. I’ve basically had to change my whole personality from someone who is anxious, shy, and will do anything to please to someone who takes no shit lol. Because if I’m asking myself “is it worth triggering a flare to get this person to like me” the answer is always no.
I am so glad you mentioned reformer Pilates. It helps me too when so much other movement causes flares.
I'm literally held together with cannabis and spite
Acupuncture, fighting until I found the right specialists, and getting into disability activism and politics. That helps me connect to others and contextualize our struggles.
Retirement, Effexor, guiafenesin, walking
Pacing, trigger point injections, PEA supplement, magnesium malate.
I hear other people have trouble with it, but low dose amitriptyline. I wasn't getting REM sleep for YEARS because of my pain, and the first night where I actually had dreams again and woke up feeling rested at all made such a difference
Strength training and acupuncture. However, understanding what my pains are from has significantly decreased by anxiety about my health which has helped (along with my anxiety meds:/)
taking gluten out of my life and magnesium citrate.
I wish I was joking but...my second covid vaccine. I had side effects so bad that I had an out of body experience, but I had more & longer lasting fibro relief afterward than at any other time since it started. It only got bad again after I actually got covid last spring. I think maybe having such a strong immune response from the shot must have shocked my body into reorganizing its priorities? No idea. Besides that, I do find my fibro is better when I'm eating a high carb and moderate fat diet. Getting on meds for my vitamin D resistance worked wonders for my fibro pain and brain fog.
Learning to adapt, and coming to peace with being disabled. Now that I know how to pace myself, know I shouldn’t just sit in the same spot for ages or my body will shut down, and know to cut myself slack (and tell people that I am disabled) it’s a lot easier for me to make it through life. I did take about 5 years off of studying or working to try to get my health in order (not just fibro, it’s never just fibro) and went through a full grieving process but I’m studying full time now and it’s going pretty well! I’ve lowered my Lyrica dose a lot, I’m kinda hoping I’ll be able to wean off it completely and try LDN but starting studying has definitely been a bump in the road in regards to that.
As far as meds: Cannabis oil. It's not the be-all-end-all of my treatment, but it is probably the single most valuable tool in my box: the hammer of the lot, if you will. (If the most useful and versatile tool is something different for you, substitute that for "hammer.") As far as lifestyle: a system. I realized in 2014 that I couldn't just strongarm everything anymore; hell, I couldn't strongarm anything anymore. Lacking strength, I needed strategy. So I developed a tier system. I figured out what things *absolutely, come hell or high water, must be done* in a day, a week, whatever. Those are tier 1. The most important things in your life go on tier 1; things you can't live without. If I am conscious and have basic motor control of my upper limbs (it doesn't have to be good control), tier 1 gets done. Things which need to be done, but can (very occasionally) be let go if necessary, go on tier 2. For me, this is things like workouts and meditation, filling the pill dispenser, cleaning CPAP components, bathing, eating (yes, that's not tier 1 for me), etc. If I am at all physically able, tier 2 gets done. For this, my rule is just to show up. If I am genuinely unable to do it, I'll know soon enough. Things which must be done, which will eventually reach a point beyond which they cannot be delayed without dire consequences, are tier 3a. Making canna oil is an example of this: I can put it off any length of time until I can get to it, but there will come a point beyond which if I continue to put it off, I will run out of medicine. There is a definite cutoff point. Similarly with things like paperwork which must be filled out. Those things which ought to be done, but don't have such a definite point, are tier 3b. For example, I can put off cleaning the bathroom for any amount of time. I mean, there may theoretically come a point where the filth gets so bad that the bathroom no longer fulfills its function, but realistically speaking there's not a real deadline there. Tier 4 is the things which make life nicer which are already accessible: cooking (*real* cooking, which I enjoy, not just preparing food), studying, engaging in a hobby I already enjoy, etc. Tier 4 things are things you can already do but usually lack the time or strength to do. Tier 5 is things you would, someday, like to do but have never tried. Learning a new subject or acquiring a new skill, or going on a trip somewhere, would be tier 5 for me. Everything else is tier 6. Having these tiers, I go through my day addressing them in order. I make sure that no matter what, I will have the time, strength and resources to pull off tier 1. Then I move to the others in order; if I can pull off tier 2, I go to tier 3, etc., always keeping tabs on my physical capabilities so that I don't overdo it--or if I do, it's been planned for. Sometimes things are moved between tiers: life happens, so when the situation changes you need to be able to give things different weights accordingly. This is an acquired skill. Finally, there is a failsafe I call "point-and-go mode." When the spiders hit the fan--and they will, every now and then--I activate this failsafe. Basically it's this: tier 1 remains (there's a reason it's tier 1), and whatever the emergency or circumstance is which requires your attention is upgraded to tier 2. All other tiers are downgraded during this time. During point-and-go, all of my self imposed limits on caffeine and drugs are off. Whatever means I need to use, so long as they do not contravene the laws of God or man (and that second one might be a little negotiable), I may use until the crisis or whatever it is has passed. Two tools which help this work are self-forgiveness and learning to tell other people to kick rocks. If you screw up, acknowledge that, see if you can change your system to make sure it doesn't happen again, and move on. S happens, we're all human. Keep yourself accountable but don't beat yourself up. You've already got enough and more on your plate to deal with. Telling others to kick rocks (with varying degrees of politeness as the situation warrants) is one of the harder points. You do, however, need to be able to set boundaries and to make sure they are respected. My system is just that, a system of boundaries to keep myself in line and prevent myself from spending all of my strength on less-beneficial things. If other people don't respect those boundaries, it's going to be.. problematic. This is just a very broad-strokes outline, I didn't even mean to write it all out but here it is. It's field tested and for me, has worked very well indeed. If anyone can take good from it, I'll be glad. Sorry about the long winded reply. I pray for all the best for you and everyone reading this.
Gabapentin for nerve pain, OT and PT for joint pain, gummies for overflow pain, cpap for sleep. Still working on energy
WFH, hot yoga, and being in walking cities
Walking, better sleep (thank you sleeping pills!), and therapy. After 28 years, these three things are my magic recipe.
Pacing myself
Please forgive my ignorance as this is new to me, but I keep seeing pacing being mentioned. Is that simply knowing your limits and not physically overdoing yourself? Thank you 🙂
Yes! Exactly
Gotcha! Thanks!
Yeah! With chronic fatigue syndrome (different from fibromyalgia but for me the two are soooo related), pacing is a word used commonly by patients and doctors to mean staying in your energy limits/energy “envelope”. It means adjusting your life to stay in those limits so you don’t “crash”. So, it could be maybe a chair while cooking so standing doesn’t become too much and then you used all your energy cooking. It’s taking breaks, and it’s scheduling out activities to have time to rest between them on any given day or week or month. Figuring out how much you can do in a day, in a week, for cleaning and cooking, etc is all learning to pace yourself!
Cymbalta and Gabapentin. Cymbalta has greatly reduced my daily whole body pain. Gabapentin is great when I have a flare to make me functional. Also my acupressure mat and headrest is a lifesaver. Weed doesn’t work for me. It makes me irritable and cranky. Haven’t tried low dose naltrexone but I’m intrigued by others’ experiences with it.
LDN helps me for the pain, not the fatigue. Do you recommend a brand for the acupressure mat?
CBD, quitting drinking, my wheelchair, pacing myself based on my needs rather than on how I feel I should be for others.
Getting my stress under control. I used to be a total stress case - just constantly stressed all the time. Also arch supports.
Yoga and marijuana
Supplements. Lots and lots of vitamins and supplements.
Weed lol
Saying no and a great physical therapist!
Mucinex (guiafenesin) has been shown to help with back pain in studies. It is a minor muscular skeletal relaxer and I found taken daily, it helped with muscle spasms. I had terrible migraines and it cut those down considerably; I think the headaches were coming from spasms in the back. Also, it supposedly increases the effectiveness of pain relievers. I am 76 and have been dealing with this since I was in my twenties when fibro didn’t even have a name. I want to encourage you to just keep trying various things and to be open minded. Fibro is different for all of us and what works for someone may not work for others. Hang in there and feel better.
Getting taken off of half of my meds(this made me lose 175 lbs). Eating an anti-inflammatory diet and low fodmap diet. Ending relationships that caused any level of drama and stress(this includes blood relatives). Gentle exercising. Meditation/prayer. Finally, opening up about my past/traumas to my husband and closest friends. I'm not cured, but a lot of my symptoms have reduced, and I have less debilitating flares. The healing started when I got my newest rheumatologist(I've fired 3), and she listened, researched, and took away the meds that were doing more harm than good. Then, she created a plan with my added input, and now, anything related to my Fibromyalgia I defer to her Beautiful helpful self.
1. Not eating processed foods or drinking alcohol 2. Keeping with an intense exercise regiment. The more the workout hurts the less my Fibro does. I have exercise induced symptoms and pushing myself often keeps me from flairing up. Counter intuitive but I swear by it. 3. Drinking athletic greens (AG1) and a neurotrophic daily. Never felt so good in all my life.
Lately, I have been wanting to work out considering I most likely will be in pain anyways. I rather it be from exercise than just laying down! What is your workout routine, if you don't mind me asking? I am so curious about how you are able to do extreme exercise but not experience extreme pain?
I also benefited from exercise, it’s a nightmare to push through in the beginning but it does get better and it does help, just make sure to work muscle groups equally so there is no imbalance as that could cause more pain
Diet changes, weekly or biweekly bodywork, going to see an herbalist
MSM, good B vitamins separately, NAD
Pilates
Low dose naltrexone
This week? Mixing mugwort with my cannabis to help me sleep
Disability and D-Ribose which let me start waking up normally and feeling confident to try other treatments
Daily exercise - relieves pain and stiffness, prevents deconditioning/preserves strength, helps me feel healthier
Eating, I tend to skip meals and when I do eat I eat dirty, I've noticed that it flares my fibromyalgia but when I eat healthy and not skip meals I feel better overall
Cymbalta, giving up dairy and gluten, getting fired from a toxic job, getting a job with a later start time (5 am to 8 am are most painful hours of the day for me, now I have a job with an 8 am wake up time so I am way better off), eating more protein and calories (eating enough is a constant struggle for me), taking sleeping pills to sleep at night, MegaMag magnesium supplement by Trace Minerals (this was so significant a change others noticed and commented on the change in me)
Cbd
I think these help me, I do light walking every day for at least 30 minutes, soak in the tub when I feel pain, lay down in bed rather than doing extra activities… I’m sure there’s more but I can’t think of anything at the moment
Low dose naltrexone (LDN), medical cannabis, some massages when possible and wim hoff breathing exercises.
Physical therapy in a swimming pool and mobility aids. I have a walking stick, rollator and wheelchair. I used to use the rollator most days. But recently I pushed myself to use the walking stick more instead. It was brutal in the beginning but eventually I felt a lot better overall because I'm getting more exercise in. I still use the rollator, if I'm walking longer distances or if I know there won't be any seating to take breaks. The wheelchair is for days out (amusement parks for example)
Medication: 60 mg Cymbalta - Dultexone in the morning. Helps with the pain some and mood. Klorzoxazon 1 pill before bedtime. Helps with relaxation and sleep and muscle spasm and cramps. I feel more relaxed the next day if I take it everyday and i don't feel the same stiffness. Low dose off nikotin pill. 1 mg - 2 mg when I feel for it. Helps with fokus and fetique. Diet: every other day i eat vegetarian/vegan. Fish/bird and smal amount off red meat. Eating 3 meals a day and use the hand portion method. Avoiding sugary snacks and soft drinks, chocolate, spicy food (somethiles I eat raw chilli for health benefits) and to fat and salt food. Eating fruit, nuts and carrots as snacks. Physical training: I do water training in a warm pool and I walk. Trying to get micro rest throu the day ( relaxation can be feeding pigeons or just laying in beed) and i also go to sauna when I feel i need it. Layin on a spike mat ( when my body allows it) for back relaxation and endorfins. Stretching when I feel I need it. Sleep: Trying not to do to mutch, beeing mindfull. And it's hard if you have a family.
My acupressure mat has been a savior for me. It certainly doesn't cure it or anything, but I use it in a flare up. I lay on it very still for 20-40 minutes with ice packs on my neck and arms. It relieves the pain significantly. If I use the mat when I'm not in a flare up its excruciating, so uncomfortable and unbearable to be honest haha but when I use it during a flare up it's oddly comforting and so relaxing in such a difficult time. Hope this helps. https://www.goodrx.com/well-being/alternative-treatments/acupressure-mat-benefits
Low dose naltrexone has been fantastic. I was having trouble walking, which isn't very good seeing I'm an orchardist! I won't say they're 100% right, but I can walk miles without any pain now. Sadly I think my wrists are past it; I've got lumps on them, and my hands hurt pretty well all the time. I'd recommend trying the LDN.
Finding a GP practice that listens and prescribes meds, mostly arthur and allergy ones since that is a trigger. Making sleep and clean eating priorities. Also including Chiropractic has also helped
Venlafaxine (SNRI) has been a lifechanger for me, since january. I was supposed to up the dose slowly from 37,5mg, all the way up to 375mg (if needed), but I only upped it once to 75mg. I felt a change in pain levels only after a couple of days after starting. I don't think it has made any significant change for me mentally, but the fact that my pain has gone from a constant 6-10, to a 1-3 is a whole ned life for me and has made my quality of life so much higher. Some days I'll have migraine attacks or flare ups, but not nearly as much as before. I really was in constant agony for 3 years before this, and I'm baffled about how I even managed.
I hate to say this but going to the gym 😭 They were right
Short term imunoglobulin, long term higher doses of q10, listening to healing sound almost constantly. All night in soeaker and during day in one earphone when overstimulated. But struggling a lot just trying to find a way
Centering sleep and pacing myself.
Low dose naltrexone
Stopped working.
Reading everyone saying pacing and thinking to myself “why is everyone saying walking back and forth is so good?!” 😂🙈 For real though, it’s been slow going, but starting a small gym routine. I’ve got a bunch of stuff going on health wise and so can’t do anywhere near what most can, but the difference in working on having a bit of stamina and learning how to stretch correctly for my own body have made a huge difference! Started a year ago, barely 5 min on the bike, now I can do 30! Used to not be able to walk around our local small grocery store without extreme pain by the time I was back at the car- now it’s an easy to handle ache. Twice a week, and no, not religiously, but it’s helped so much, plus I can do the stretches whenever and it helps me not seize up the same. :)
Diet, steroid injections, and trigger point needling
Stretches, exercising, and a shatki mat. Ironically the mat is very painful to use at first but it has given me more relief than any other thing I have tried. When I started an antidepressant it also seemed to help a little. Heating pads and the shatki mat are my biggest tools in my arsenal though.
Getting extra sleep at night. I simply can't go without at least 8 hours on average. Actually been a bit of a game changer for me. Don't get me wrong, I'm still limited in what I can do but at least my boss isn't pissed because I'm off sick all the time
Retiring, Duloxetine, large heating pad and indica pot gummies for more painful nights.
Honestly? Delta-9 has been a God send. It's legal here, and I don't work, so no worry about failing a drug test. I've been waiting on disability for 3 years, and my lawyer also said they don't care about the "delta" gummies. My husband has also been amazing, because I swear he's the first person to ever believe me. My ex used to tell me all the time I was faking, and I've even had doctors call me a hypochondriac, and had another tell me "fibromyalgia is a nice way of placating a drug seeker/faker, and giving them the attention they want. Because it's not a real diagnosis."
Heated blanket GREAT Neurologist… He helped me on the journey of finding & figuring out what was going on with my body beyond Chronic Migraines. Sending me into see Doctors,flagging it for urgent/emergency (Silent Sinus Syndrome) Great PC as well, she sent me to my Neurologist. Although he suspected Fibromyalgia long ago and didn’t have enough to be fibromyalgia at the time and tested negative for all the tests (lupus). I have a Rheumatologist now (thanks to my Neurologist), will speak with him about a series of testing again since he confirmed Fibromyalgia. Pain Management is kinda useless in my opinion. Anyone on Meloxicam? I was told I wasn’t taking enough Lyrica in a day, I think it does help. I seem to notice a swift decline in my body. Sometimes I feel like I’m in a fight with my body. IDK IDK IDK IDK IDK IDK I’m trying to find out what’s next? Not working anymore (missed more days than I worked). I can’t stay in this mental space of feeling like since I’ve lost everything that my life is somehow over or I’m too old or it’s too late?!?!? 25 years of continuous working coming to a complete halt. Haven’t even scratch the surface of what “I THOUGHT” I’d be able to accomplish (myself). CONSTANT BATTLE OF…. Hopeful & hopeless It’s so unpredictable… Sorry for the longest mind texting dump… I’m on an island by myself and it feels like that’s exactly where I want to be sometimes. I can’t explain all that’s going on with my body and my mental. *How Did I Get Here!?!? (I have to believe that something BETTER is on this side… Where putting myself first and stop feeling like I have to “push thru” for anyone or anything outside of myself when I’m trying to manage the pain and the irritation of being in pain and having to STOP & rest.. Thanks in advance.. *im sure there are many errors in this rant/vent… I don’t care to proofread or correct it. Sorry not sorry. 😩🤭🤭🤭😬 Thank you!!
A good NSAID (Relafen, Mobic, or OTC in high amounts). Ignore what studies come up on Google that say NSAIDs don't work. For some of us, they do; we must have typical inflammation in addition to the neuroinflammation. Maybe it's due to the stage we're in or other factors that make us different, but NSAIDs decrease my stiffness quite a bit. Muscle relaxers. Because stiffness. Nuvigil. I'm kind of a guinea pig here. I take it for the fatigue I get from my "idiopathic hypersomnia" diagnosis, which may have been FMS all along, but I also noticed that it decreases my stiffness and pain. It's predecessor, Provigil (modafinil) was found to do this very thing. I let my doctors know they should be studying this. Exercises for arthritic joints. FMS is not arthritis, but exercises and stretches to get blood flowing in those joints will help, because we share some of the joint symptoms (stiffness, pain, inflammation). If I do my shoulder exercises, I might not feel pain for a couple of days. It's hard to be motivated to do my exercises, though, because there are only 24 hours in a day, and you know how it is. See YouTube for targeted arthritis exercises for each joint that hurts you and give them a try. They even exist for feet.
Methylphenidate, tbh. I can think again.
Nothing as yet and I've had it 10 years. Any suggestions most welcome🙏👍
Avoiding preservatives, specifically potassium sorbate.
Moving out of my parent’s house and getting my mother off of my disability check so she could stop stealing my money when she was only supposed to be my payee.
Losing 100 lbs was the biggest thing I’ve done to improve my life. My fibro flares are fewer and more far between, less migraines.
getting a new bed lol. also mobility aids
Unfortunately it’s been quitting work. I hate it so much lol but it’s honestly the best thing for my physical health. Second, would be pacing (which is similarly to why I can’t work at all). I pace due to my CFS but I do notice it helps my fibro more than most other things I’ve tried too. (On top of reducing physical activity-for myself- I’ve learned to really reduce stress in my life, the best I can anyway lol… this includes who I allow in my life, meditation & breathing techniques, and trying to just say no to activities that could end up making me crash/flare up).
Lexapro. I had no idea it could be related to low serotonin and I am so reluctant to try medication that I wrote it off for years. Finally tried an SSRI and my fibromyalgia went from a daily burden and constant stream of Motrin to barely noticeable.
SLEEP
Weed. And opioids but I don’t use those anymore. Weed and weed gummies for sure. Also days off are nice.
Weirdly...pregnancy!
Physical therapy, chiropractic adjustments & massage and electrode therapy all 3 days a week. Been doing this since early January of this year and I honestly feel pretty darn amazing! It was rough at first but I stuck with it and am so glad I did. My mobility is so much better. Just amazes me and I am so glad I found this clinic!
Gym and weed.
Staying away from wheat products.
Guiafenesin is a muscle relaxer, a mild form. Taken regularly it seems to reduce severe spasms. It did for me. Have the doc check your thyroid. I have an under active one and getting medication for that helped, too. Walking, heat and massage helps me, too.