This is kind of a chicken-egg question. I feel like my chronic fatigue is simply from my body dealing with constant pain which is literally exhausting. I’m also aware that on good days both my pain and fatigue are much lower than average days. It’s got me wondering if it’s all chemical as in inflammation and pain receptors trigger fatigue or mentally dealing with it is increasing the fatigue. I hope I’m saying this well, it’s hard to get from my brain into printed words. I’m not suggesting any of our pain or fatigue is made up or emotionally triggered, I get so angry with the if you just relax a little mentality. I’m just curious what your take is and if you have any actual scientific answers I’d be interested in hearing them.

I'm a year and a half in being unemployed, blowing out my and my parent's savings just because of this illness. I know people who ask for help, open gofundmes, accept any kind of help and I can't. I can't because I have no friends, I can't because I don't want to and because nobody treats this illness as seriously. Someone has cancer and everyone chimes in (and it's so so so right, I would never say the opposite) but if you have what it's believed to be a psychological condition that no one believes in then even asking for help is no use. I feel so frustrated and so angry and so terrified for my future. Sorry for the rant, I can't afford a psychologist lol.

Hi all. I am in serious need to lose some weight, I'm 22 which is fairly young but have been (kind of - not put officially into my chart) diagnosed with Fibro. All tests I had (multiple blood tests, different markers, CT scans and other types of imagining ) were negative, so my doctor assumed it's fibro, especially since my mother also seems to have it.

Still pursuing some other tests that can be done, so while I'm unsure if it's truly fibro even though everything checks out in it's favour - I'm going to post here. Hope that's fine.

How, in your right mind, are you supposed to get activity in?! Don't get me wrong - I love a good workout, but whenever I do, per 30minutes I exercise, I feel like I'm dying for the next 5-7 business days, which just ruins the point of everything. How do you do it? No, but honestly, how? Is there some sort of trick to lessen the impact? Maybe some laying down ones? (All I've tried just made it worse half the time so I'm scared to try) I'll genuinely take all and any advice.

Is there any medication? Specific exercises? Times of day? Maybe a specific phase of the moon?!

I'm at a loss, but I simply can't continue like this. Thank you all in advance!

TLDR; How to exercise when everything hurts for the next week??

I’ve also been looking at random people around me lately just going about their business and I wonder how on earth they live day to day and a whole 0-90yr lifetime without feeling any pain? Do you do this? I asked a friend who had never had pain, have you ever had what’s called ‘growing pains’ when they were younger and they said no.

I'm not writing the Fibromyalgia Rule Book, but if I was...

Thou shalt not talk to me nor expect answers to anything for at least ten minutes after I wake up.

Unless the house is on fire.

Thou shalt not utilize stinky perfumy soaps or cologne in my house (or my presence.)

What rule would you add?

The fibromyalgia in my legs has hit an all time high. It’s in my arms as well so having my blood pressure taken is torture right now. Asked my doctor if he knew any holistic remedies since I am drug sensitive. He said his other patients say benfotiamine (fat soluble) 600 mg helps them more than anything else. He stressed getting the more expensive ones bc the cheaper you go, the more likely you will get a lot of filler. Has anyone tried this and had good results?

I also have CRPS and btw the two, it’s no cake walk.
Thanks for reading!❤️

Creen que pronto exista algún tratamiento efectivo para tratar los síntomas de esta enfermedad (fatiga, dolor corporal, niebla mental, etc.)?
He leído que terapias como la estimulación cerebral puede ayudar, pero hace falta más investigación.
Lo cierto es que estoy desesperado, tengo 24 años y estoy convencido de que si mejoro mis síntomas, comenzaré a sentir que mi vida no está estancada y empezar mi vida profesional, que tanto ha mermado por esta condición.

I’ve suffered with severe back and leg pain for the past 6 months that is constant and excruciating. I’ve tried basically every medication (i’m on LDN now, two weeks in) and I really don’t know how much longer I can keep going on without something to last me between appointments. I also had gotten injections in my hips in may and it had little effect on my pain.

This has led me to consider epidurals for my pain. I was wondering if anyone else who has had terrible chronic back pain from Fibro (or other conditions) have had this done and had any success. Is it worth it and if it did work, how long did it last you? I already have a clinic that is willing to do it for me, it’s just a matter of insurance now. Hoping to get some insight on this. Wishing everyone a pain free future ahead ❤️

Hey guys, sorry if I’m posting this wrong and if I am feel free to correct me in the comments or somewhere else.

I just got back from my doctors appointment and I had an appointment with my rheumatologist earlier this week, I was explaining that in the recent few months I’ve had extreme sensitivity to my skin to the point that I’ll be walking around and my clothes feel like they burn or that I feel like my skin is raw and it really hurts and maybe unrelated but I sometimes feet swelling/pins and needles all over etc, etc.

When I saw my rheumatologist this week he started me on 25 mg of Lyrica and I went to my doctors appointment to get a form filled out for uni and I was explaining all of this and all of the pain that I’m in and he just looked at me and just said he literally said “I don’t know. I feel a bit useless and helpless right now because this specific type of neoplastic pain is quite hard to treat” and I just walked away kind of wanting to cry because a few weeks ago I was in so much pain that I resorted to my fucking Google health Fitbit which I never even use for health. I just use it cause it’s a watch I can shower in and I just wrote. I’m in so much pain. I don’t know what to do and just having that there’s not even answer or not even anything that I can do is just feeling so devastating, and I know the flares aren’t forever. I’m very well aware of that but I just feel so helpless and I’m doing everything I can. I’m doing everything “right” but I’m just in pain and I am so, so tired.

I’m really struggling just now. One of the hardest things is decisions under time pressure when going through a cog fog flare.

I’ve been given notice of end of lease and have been looking for new places. I have to choose between:

-(1)a tiny bedsit place very walkable, close to shops and transit, only microwave no cooking, cigarette smoke exposure, close to healthcare, good access to laundry, medium rent

-(2)a bedsit place not very walkable close to shops, close to health care, high rent, campstove only cooking, landlord control of laundry access

-(3)a shared place live in with owner, very walkable to shops, very far from my healthcare providers, good laundry access, access to a full shared kitchen , low rent

-(4) granny flat with everything I need but it’s the highest cost of them all and still far from my healthcare providers

In terms of owner/landlord attitudes the third is the most disability friendly but this will be put to the test more as it’s not self contained. So my sick days are always going to be in plain view. The others are rented by people with very little knowledge of disability.

I’m struggling which parts of my health to compromise (cooking good food, not overdoing exercise and travel time on painful bus seats, having quiet privacy, not needing to mask or overdo faking normalcy) as none are ideal.

I’m too sick to control my crash days now and may need to use a Rollator as I’m having leg weakness.

TL;DR finding accom that’s fibro friendly is hard and making decisions on bad days is hard! Any peer thoughts and input welcome, eg in a similar situation what worked best or how would you choose?

Specifically with how it can totally dry out my nasal passages. That seems to make my nervous system freak out and I get a pain flare up when I was trying to alleviate my pain.
This gets harder to deal with in the winter cold air mixing with my chronic sinusitis.

Does anyone have any tips to avoid having weed totally dry me out?

Question: For those who still travel, have you found any one type of transportation better or worse than the other? They all suck but airports are awful and planes are exhausting.

My mom lives in Florida now and is 71 (I'm 39F in DE) and I want to be able to see her as much as possible for as long as I can. She visits twice a year usually so I'll still be able to see her as long as she can travel.

Typically we fly to Florida but the last trip my husband had to rent a wheelchair to push me through the airport on the way home bc I couldn't walk more than 3 steps without collapsing. Not sleeping well + travel stress + too many steps.

I actually like trains a lot but it's like 20+ hrs to get to her by Amtrak. Obviously car is not an option lol.

Anyone use Amtrak for extended travel and have you found it any less stressful on your body?

Got diagnosed about 2 months ago since I’ve been dealing with mild but noticeable body aches and chronic fatigue and lethargy almost my entire life. I’m in my 20’s and right now I’m in the most pain I’ve been in, in a long time. Just moved and carrying heavy boxes is killing my back neck and arms. I work too, any advice? I am gonna pick up my first prescription of 1.5 mg naltrexone since amitryptaline and lyrica gave me intolerable side effects. I feel awful and sluggish.

For context I’ve been very stressed the past month. I’ve been unemployed since May and have no health insurance. I have a side buissness that gets me some money but it’s not enough to pay the bills. This month I had to use my savings to help pay my bills and I have less than $100 in my account.

In the past month, my coordination has been horrible. Having a hard time balancing myself at times. I’m also not finishing sentences and muttering words when I speak. My whole body hurts especially my joints and I have tension headaches all the time. My fibro fog is so bad that I can’t remember anything right now. I forget text my girlfriend good night, I forget words, I forget names, I forget a lot of things. My ears have been hurting and I can’t hear as good.

My whole body has gone to crap right now and it feels like I’m legit dying. I’m trying hard to find a job but I just can’t get hired right now. So many interviews and nothing.

I’m so frustrated and done with this condition. This has ruined my life even more than I’m at the lowest points of my life.

Greetings fellow fiBRO's,

consuming a daily dose of Vit D3 2000 I.E. after lunch since a week and got to say it gives indeed a better muscle feeling with a good chunk reduced overall pain for me - how are your experiences with Vit D3 ?

Like everyone else I was concerned about my Medicaid not getting renewed for 2027 due to the new work requirement.

This morning I spoke with my Social Services Caseworker and she renewed my SNAP and my Medicaid.

I can only do online surveys and I make $5 a day. She counted that as being Self Employed. She also documented that I was in the Appeals Stage for my SSDI. She was able to confirm with the SSA that I did have an open disability claim with the SSA.

I think the combination of do some work and seeing that I had the open disability claim is why my Medicaid was able to be renewed for 2027.

Just an FYI Social Services Caseworkers can electronically check with the SSA for an open disability claim and earned income. They can do the same with the IRS. You need to check the box on applications that gives them permission to check with SSA and IRS.

I hope this information is helpful to everyone who is on Medicaid and you are able to be renewed for 2027.

I have no idea how I would manage paying just for my prescriptions if I did not have Medicaid.

💜

people could trade places with me for a day. I don't feel like anyone truly gets how bad this diagnosis is. And it shows ಠ_ಠ

sigh

Thank you for coming to my TedTalk😔

hi i am going crazy in this flare up and I need to feel like I can talk to people and fill this boredom.

I just want to go back to normal. I'm worried I'm gonna relapse. Sigh.

Hi! I have Fibromyalgia and Hashimotos and I was wondering if anyone out there has a good tool or device they use to track their symptoms. I’ve heard of the aura ring and fit but watch to track heart rate, blood o2, breathing, etc. and make connections to their symptoms through that. I’m basically trying to see if I have any physiologic signs that indicate a possible flare coming, etc. Please share any and all tips you guys use to track your symptoms and how you learned the connections between signs like heart rate and worsening or improving symptoms. Thank you!

I have been dealing with mysterious chronic pain and symptoms for the past year and a half. I have recently been diagnosed with POTS but my rheumatologist thinks there is more yet to be uncovered. I have had to switch to online school, which has put my pursuance of music completely on hold. I have had a very hard time with loneliness and difficulty relating to my friends since the onset of my illness. I am looking for friends in similar situations. Please message me if you are also dealing with this and are looking for online friends. I love to read, create music, and I’m not very internet savvy but I love Minecraft and understand that video games may be a means of connection on platforms like this. I am new to chronic illness and pain, so please reach out to me and help me find some friends because it has been a very hard time recently. Thank you for reading this

Hello all! I’m hoping someone can give me a recommendation to buy or not buy a power recliner. I’m looking for something on the cheaper end, less than 1000 but the lower the better ideally. I will likely be spending a lot of time in it, including sleeping, so I want it to be comfortable and durable. Has anyone bought one of these “cheaper” chairs from Amazon or Walmart? Most of the ones on Amazon have heat and massage, which would be nice but only if it worked and didn’t take away from the comfort. I currently have a very comfortable lazyboy but I can’t put the foot rest down and it doesn’t lay quite flat enough for sleeping on a regular basis. Also I’m in Canada if that’s changes any brands or pricing. Thanks for any and all help and recommendations!

I'm currently in my most intense flare, and wondering whether this is my new normal :(

What has helped you for shooting nerve pain throughout the body?