I’m 20 almost 21 new to this support group & I guess I just need to know that I’m not alone other people are in bed all day ( when you want to be doing something productive) sick of hearing ( omg you slept all day! YES I DID I WAS UP ALL NIGHT IN PAIN WERE YOU??), know That I’m Not the only one who Can’t even sit comfortably on the couch to watch tv, sick of gaining weight from all the meds, sick of taking all the pain meds, sick of just feeling alone! Please someone tell me im not alone… ?!
you feel exactly the same way i do!
i wish i could make you feel better but i know how hard it is
please stay strong and message me whenever you need, xoxo
hugs
I am truly excited I have found someone who feels the same way I do!! I am
Extremely sorry that you are feeling this horrible! If you feel like I do I wouldn’t wish it on my
Enemy! The same goes to you, message me anytime you just need someone to talk to I would lOve to chat with you about our common illnesses! Thanks for your reply as well! 
Dear Kinsey
Indeed you are not alone.........up all night with pain only to have your body collapse and finally when the pain subsides you fall asleep. And there are days when the pain continues to gnaw away at us and I cannot sleep if I am in pain. So then you suffer sleep deprivation for two days and two nights. Only people who live with chronic pain know how much it drains your body of every bit of energy. Then when you do feel a bit better you look around you at all the work piling up, some of it you can do but lots of it just ignite more pain. Oh yes, my dear Kinsey, many of us know what that it is like.
We only wish we had the answer to this, but we don't. So, we do what we can and try to find what brings us joy. For me housework has never brought me joy.
Thank you for starting this discussion because it will allow people a place to be "real" and talk about how we feel. People without chronic pain and fatigue just don't understand us so it becomes very frustrating to talk to those people who have already made up their minds that we are just lazy.
Together we support each other and remind ourselves that we must hold on to hope. If we lose hope then we have lost everything. Believe me there are days when I find it hard to hold on to hope.
Love you girl
Gentle hugs
Rachel
You are so NOT alone there!! We totally get you on this. Everything hurts all day and night, no matter what we try to do. I'm constantly trying to get comfortable, get some sleep, and constantly hungry too. It is a difficulty on a daily basis, trying to make the most of our lives, and going through the ups and downs of the fibromyalgia.
This site is so good for support from new friends who experience the same as us, and when we are down, they help pick us up again. You can learn about how to get help and take care of ourselves and get the best out of life. Once we accept our diffiulties, and realise what we can achieve, we can adapt successfully.
We also have a laugh especially at our funny moments when we forget or do silly things. This is the fibro fog's comical side and I personally like to remember my "moments" to cheer me up when I am feeling down.
I'm glad you have found your "sisters and brothers", and wish you all the best
Jo
HI KINSEY NO YOU ARE NOT ALONE A LOT OF US KNOW WHAT YOU ARE GOING THROUGH WE DO WHAT WE HAVE TO DO TO NAKE IT TBROUGH THE DAY INLY PEOPLE LIKE US KNOW WHAT ITS LIKE WE DI T HAVE TO EXPLAIN IT TO EACH OTHER YOULL NEVER HEAR FROM ONE OF US OMG YOU SLEPT ALL DAY WEVE BEEN THERE. WELL TRY TI HEKP.EACH OTHER TBROUGH THE BAD TIMES AND CELEBRATECRHE GOOD ONES WERE HERE FOR EACH OTHER WHEN IM HAVI G A BAD TINE I JOB. TBE GROUP ONLINE OR WATCH FUNNY MOVIES OR TV SHOWS OR WATCH MY DOG SOMERHING TO DUSTRACT ME WERE HERE FOR YOU AND EACH ITHER ANYTI.E DAY OR NIGHT
Hi Kinsey,
You are so not alone. Since I found this site, I feel like I actually have someone to listen to me. And I totally understand about not being able to watch tv, etc. The last time we tried to go to a movie, we had to leave. Now I have Netflix so I can lie in bed and watch what I want. It is well worth the $8 a month. I wish I had suggestions to alleviate your pain, but if I did, I would be rich from selling my secret! ( yes, I do live in fantasy land sometimes) Not sleeping and sleeping at odd times may be difficult for others to understand, but with fibro, you have to sleep when you can because your body desperately need the healing power of sleep. Hang in there and I hope you find some relief soon.
Definitely not alone. I just turned 26, and your rant sounds so similar to mine. Feel free to reach out if you' like to talk more. xoxo
I lived like that since 2006 …lost my job, my home. My daughter had to live with her dad…lost my life as I knew it…I just got put on a low dose of morphine and I am living again.!I am.saddened that I wasn’t put on it years ago …maybe wouldn’t have lost everything …but that’s the trouble with the doctors and this disorder …when the pain management doctor decided to put me on morphine I showed up in his Lffo e crying and yelling. I had high blood preasure from the pain and hadn’t slept for days …I feel better now.
Hey! I’m just about to turn 23. I was diagnosed when I was 21. I know the feelings that you are expressing! I promise you are not alone and that it can get better. It took me awhile to just get back to a full time job. I was in bed for months…couldn’t even walk when I was first diagnosed. I still have my bad days (I’m on vaca at the beach and can’t even do much) but you are not alone!! You can message me if you need to talk
I'm sorry to hear so many are suffering this way. I try not to take any meds but I have not been sleeping well either and so take an amazingly small amount of amitryptilene (Elavil). It helps me sleep but I feel the side effects the next day. I also have Xanax but it seems to only work if I take it once a week or less. So I keep it for emergency stress. Benadryl helps with many of the symptoms too. I take the tiniest dose (about 3-5 mg). Have you tried that?
Magnesium is super important. If you can't sleep for muscle pain, try an epsom salt bath. It is magnesium and will go right to the muscles to help them relax.
I love Stress Relief by Shaklee and Herbal Sleep by Nature's Sunshine. They both help calm the nervous system down and they are both natural and have no side effects. I try to exercise everyday but it is really hard to do this time of year when it's so hot. We will be getting a workout area that is in the ac soon. yay :D
I found out that my fibromyalgia is a secondary condition caused by Ehler's Danlos Syndrome (EDS). So I don't know if mine is different than yours but I'm now learning that what I thought was muscle pain is blood vessel pain. Dysautonomia is my worst problem which is the cause of fibro, EDS, Orthostatic Intolerance or POTS and digestive problems. In the heat I can hardly even stand up.
It does seem that this is a friendless world of pain that we live in :(
I am 39 now and thought I was alone with these problems that were undiagnosed and unexplained for so many years. It is nice to know I'm not alone though I'm sorry for all the others with these issues.
I hear the frustration, pain, anger, and so many other emotions that come from having fibromyalgia, in your post. No one can totally understand what you are going through because we are so unique but those of us who deal with this disease have empathy and compassion for what you are going through. I have dealt with this disease for many years and have watched the awareness campaign for the disease produce support groups like this one that were not available when I was first diagnosed. Good for you for taking advantage of your resources!
The one thing that has helped me in managing this disease is coming to acceptance of what I can and cannot change. I cannot make this go away but I can find what works for me to manage it. For example, I keep an arsenal of things by my bed at night and I have found what my passion is to study and explore about. So I have my computer with internet, books, booklight, drinks, earphones, CD's with workshops, music and many other resources. The most helpful with the pain is large icepacks and heating pad which I alternate. My freezer is full of different size and types of icepacks. I never leave home without them. There is a CD by Mark Grant called Change your Brain Change your Pain using EMDR is something I listen to a great deal which also helps bring my pain level down. The hot tub and hot baths are also helpful. But remember these are things that manage but do not cure. I keep up with the latest research that is being done with Fibromyalgia, just knowing someone is doing research helps me not feel alone with this disease.
I have learned that my family and friends can never truly understand disease no matter how bad they want to. Many people will offer information they have read or heard about with an attitude that if you will do this than you will be OK. Although most have well meaning intentions sometimes this makes us feel worse. When I remember their motivation is to be helpful that can change my attitude to a more accepting one.
I enrolled in an online school and finished my degree because of this disease. Many sleepless nights with my icepacks, heatpads, and computer I was able to finish many papers. But their were times this was very difficult. But when I stopped trying to fight the pain and the disease and accept it, things began to be a little easier. But I still have days and weeks that are hard.
Although, Kinsey this is your personal journey, you are not alone, there are millions of us out their dealing with this difficult disease. Just by the fact you were able to reach out and share shows that you are finding your own way to manage this disease. Thank you for your honesty in sharing with us during one of your difficult nights.
I wish you many more easier days than difficult ones.
Kinsey....Know this....you are not alone. Far from it. Fibromyalgia is epidemic. We all share most of the same symptoms. I can't sit on my couch for very long. Couple minutes and I'm hurting. I tried other people's couches and can't be comfortable on theirs either. I end up laying on my side. Tried a rocking chair, lumbar supports, you name it. Just can't stay in one position very long, not even standing. It's insane, like having a monkey on your back that's biting you. I rarely go to a movie theatre because I can't stand sitting that long. Have to rent movies and use the "pause" button so I can get up and move around. We all try to find ways around the pain and fatigue and share that with others. It's a process that we all have to do in order to find what works for us as an individual and what doesn't. Everybody's different. You just gotta keep trying things.
You've come to a good place here on this website. We all want to listen and help. A person needs to have someone that understands. Otherwise, you may as well be talking to the wall.
Hope you get some comfort from knowing we care.
Allergic
Deb, I have dysautonomia too. At one point I was passing out with no symptoms until I was finally diagnosed and put on meds. After five years on the meds, they took me off them. Now, 10 years later, the dysautonomia is back and I have a lot of symptoms and can barely function a lot of the time. How are they treating your dysautonomia? Does treating that help the fibro? Any info you have will help, even if just to know the right questions to ask the specialist I am going to in a couple of months. Thanks.
Wow… I’m speechless… I never realized how many of you truly understand my pain & feelings! I appreciate more than words all of you taking time out of your day to comment these truly helpful comments! They have helped me more than you will ever know! I also want to tell you that if any of you need someone to talk to feel free to message me anytime! I would be more than happy to do whatever I could to help you through these times that we all know too well!!! I am beyond thankful & blessed that I have joined this great group of people. I send all of you gentle hugs!!! Xoxo!!
You're definitely not alone! It's hard, especially when we suffer so young... just know you aren't alone. Keep posting, and finding people to connect with... Feel free to add me and message me.. I got diagnosed under a year ago (at 24 years old)... it's a dramatic change of life from doing things you wanna do to doing much of nothing.. I long to be productive. Just can't do much that's productive these days.
The most helpful thing seems to be benadryl. But I take the tiniest amount. I get the little pink ones and bit off a little or cut them into quarters or smaller. I'm hypersensitive to meds so I take less of everything.
I was diagnosed with dysautonomia by the cardiologist who did a 3 week heart monitor. And then an endocrinologist followed up with an ANSAR test (Autonomic Nervous System Assessment) which confirmed the results. They tried beta blockers but they dropped my blood pressure and made me much sicker overall.
If the benadryl works, it means that you have unstable mast cells (likely MCAD or even mastocytosis). Mast cells are supposed to degranulate to release about 60 different chemicals into the body to fight off foreign invaders. Histamine is the chemical we feel the most. It can actually even cause anaphylaxis. Some people find they need to take both an H1 and an H2 blocker at the same time to stop the symptoms.
There are videos about it on youtube. I like the videos by http://prettyill.com/. She explains it very well though it is just being researched and understood or at least recognized that it is little understood. There is so much to learn. So many with EDS have this problem that there is definitely a connection to the connective tissue problem and the unstable mast cells. Cause and effect is still unknown but there are a few theories.
Fibromyalgia is caused by a dysfunctional nervous system. That is proven. The nervous system can be thrown off by chemicals from mast cells or toxins or injuries. Anything that messes up the signals to the muscles could do it. So these things go together a lot. I wrote some more about it at http://www.debdrake.com/dysautonomia.html
Im so sorry to hear you are going through such a hard time.. i have personally tried benadryl and it didnt do a thing for me at all... thank you for the idea tho My mother is a nurse she she makes me try simple things to see if they will help so i dont have to try such hard meds for my body!
Whoa, i just looked up disautonomia to educate myself and it sounds like what I might have. For over a year I have been having really serious dizzy spells, fainting, seizures and really fast heart beat and inexplainable anxiety attacks etc etc. Does it sound about right to you guys? Also, if i mention it to doc will i lose my license for a bit? I have been wondering what all these extra awful symptoms are for over a year and it would be nice to understand why. I just haven't gone to doctors much because I have been "advised" not to drive, but I want to keep my driving license.
Thank you living_free… I appreciate it!! It does make it so much harder being so young… & wanting to do what others your age do! I will be praying for both of us! Feel free to add me as well!! & I’ll do as much as I can help!