Welcome to our community New! Silentsufferer09's advice to keep warm is on point. I also have fibromyalgia, and when I get cold I hurt much worse. I hope you can find a way to get more rest. Have you tried some solely time tea, chamomile tea, or an over the counter night time pain med that helps you to sleep? My psych doctor ran some blood work and my serotonin levels were low, so he kept increasing my antidepressant until the serotonin was right. He explained the serotonin also works on pain. We all know depression and or anxiety generally comes with fibro and most chronic pain issues. But know we are all here for each other! I'll be praying for you and hope you get some relief from the pain soon.🙏🌼
New, welcome to our community family. I'm sorry to hear about you being a fellow sufferer. When I get cold it makes me hurt worse as well. You need find a comfy temp and keep your body as close to that as you can. Avoid chills, etc. there are many of us here and we are all here to help one another. I hope you can find comfort in that and knowing that you're not alone.
Welcome to you also, dee6569 & esq777! Check out some websites:
I have fibro but not lupus. I do have Sjogrens and there are two doctors suspecting MS. I'm being sent to Mayo clinic for further tests. Some days the fibro is easy to ignore and other days I can't focus because of it. This group is wonderful, understanding, & supportive. You're in my prayers. 🙏🌼
Dee6569, I think many of us felt that way too. My husband neice said to me, "you look like there's nothing wrong with you." Then she looked me up and down, judging me. That's why I'm so glad to have found this community. We're all in this together because we understand chronic pain. I hope you find it as helpful as I have. 🙏🌼
Hello New, welcome to the community. I am sorry to hear about your suffering. I hope that we are able to provide you with some comfort and encouragement and maybe with some advice while you are here. I don't have Fibro, so that advice can't come from me.
New here too. Woke up so bad and both my feet and hands are just achy, throbbing and burning. Wrapped in heating pads to help. Only can't really rest too long. My 2 kids keep me busy and always up and about. So can't really stay wrapped for long. Any insights on what could possibly help with this burning. I've already taken 200mg of Gabapentin and still hurting. I can't take more because then I get really sleepy. I only take 600mg at night. Hope all of you are doing ok.
Smilethruthepain4now, I don't know of any way to stop the tingling and burning., but I wish I did. To keep my hands warm I wear crafter's gloves. They have the fingertips cut off so you can function. The best set I've found was by Isotoner, on Amazon. They come higher up the wrist. I sometimes have my 9year old granddaughter, and in two days time I'm worn out. I can't imagine all of you parents trying to raise young children with chronic pain. I'll keep you in my prayers! 🙏🌼
FlappysLady81 thank you. I'll look those up. Yeah I have a 4 and 7 year old and they are very active. Usually this pain in my hands and feet don't usually last ling but this time it has been about 2 weeks. I'm guessing it's the weather too. Here it's been raining and very humid for over a month and this weather kills me. Having fibromyalgia and moisture in the air keeps me in a flare for months. I wear a brace on my wrists too. Just was told about 2 months ago that I have carpal tunnel syndrome too. So just trying to cope.
Hi new, Welcome. I also have fibromyalgia and insomnia. I don't have any answers. I just wanted to empathise. People say that fibro is often sparked through an initial crisis. If this is the case mine was probably sparked by a stress related illness. I had a breakdown during my teaching career. This resulted in panic attacks. I can identify with Flappyslady81's remarks. When I met the children in the street they would remark, 'Hello sir, when are you coming back to school?' I could see them looking me up and down as they thought, 'There doesn't seem to be anything wrong with him. My fibro affects my walk at times. Sometimes my gait is fine. Other times I struggle. At these times I look as if I have special educational needs. I find it quite funny when people's perception of me frequently changes. I see the look in their faces and expect them to ask, 'Does he take sugar?'
JollyRoger, Someone posted the link below a day or so ago. I haven't read it all yet, but it mentions gait disturbances. I also have it. I have vertigo too and right side body weaknesses, so they're not sure what's causing my gait issues yet. Until I saw this website, I don't think I've ever seen gait disturbances as a fibro symptom. 🙏🌼
Welcome Charlton! I've had it since'08-'09. It rose it's head in the middle of my body fighting against a large benign tumor, which took the docs 2 years to find. I've had one issue after another jump on board but up until last summer I did NOT want to admit I'm likely never getting better. I have now, and this year alone I've had hypothyroidism, sjogrens, tremors & dementia are added on.
But I'm not my diagnoses. I still have feelings of joy and sadness, desires to do things that I'm able to, etc. I make the most of my good days and rest on my bad. And I rely on this community for compassion, understanding, help, a shoulder to cry on, and to keep me sane through it all. But above all God is my strength. Without Him if have ended my life long ago. We recently got a dog, a year after losing our last one to cancer. He has made my days better.
It may take you awhile to find your own method to cope with it. Just take one day at a time. You are still the beautiful person before you got sick; we all are. Unfortunately pain is overwhelming us and makes us only see it's ugliness. (((Hugs))) & prayers for you! 🙏🌼
Charlton, I understand what you mean. Sometimes it can be all consuming and you get lost in your illnesses. Sometimes you don't even see it happening until you're already there. Unfortunately when you live in horrible pain every day, it's very easy to slip away. I try to be "present" every day no matter how bad things get. I use biofeedback, self massage, breathing and relaxation techniques and chat with my wonderful friends here in this community. I'm sorry you're in such a bad spot. Hang in there. Find something from your Pre-pain life and remember how happy it made you. Focus on the fact that you still have a life, it's just different now. We all have these things that are difficult to beat each and every day. Just know you have alotmof folks here that can get you through. Hang in there. I wish you all the best.
Thanks I'm honestly trying to stay positive, but it is hard. I've got 3 children at home. 11 yrs.& a set of fraternal twins ages 9. They are very busy. I fall asleep at the drop of a dime. I hate it!!. This is not me. I feel like my life is just picking on me at times. I've been called " lazy" . It hurts. I just don't know how to cope as t times, have become depressed.this disease is relentless, that's for sure.
Welcome Isumama25 & Poweryoumedia! Charlton, depression is part of fibromyalgia, they go hand in hand. Our minds are struggling to cope with everything just as our bodies are. I'm under a psychiatrist because I couldn't survive from the depression without him. I hope you have one, and if not I suggest you get one. Talking out things with a psych doc helps me to work through and cope better. 🙏🌼
Welcome all of the new ppl your in a good place to vent were really good ears and Know the pain we all have it and have our really good Drs That don't lesion to a word we say we've been called out on our handicapped Illness By family Members and friends too And I would have gave up if I'd've haven't meet a few names here flappy lady 81 ,allwayzinpain ,Profile,and head is foggy and can't rember the rest but thanks for letting me ramble on
Hi new here too.... Has anyone here also had a hard time with there spouse\ significant other?? Mine is a real jerk!!! We have been together 20 yrs, I have had fibro for 13 of them plus we dated for 2 yrs in high school. I am 40. So he knows the old me and how this has taken my life away. And he's so mean to me. All the mean things others say about people with fibro he has said to me. But over and over for the last 13 yrs. I am on numerous medications, nucyta for pain, kolopin, gabaentin, Zoloft, respridol, ritalin, and topamax for seizures, oh yah I have epilepsy, ptsd and and an anxiety disorder too. I see it, I know I should leave, I haven't worked in 13 yrs either. I have 4 kids. I feel so stuck and helpless.
Renae, welcome to our community. You'll find a lot of support here because we will understand what's living with chronic pain is like. I'm sorry for what you're going through. I think almost all of us have been through it, be out a spouse, partner, family member or friend, coworker, and yes even doctors. It adds unnecessary stress that compounds the pain.
I started with fibro two years before I had to leave work because of surgery. It's been 5 years since the surgery but I've had one thing after another go wrong with my health. This year alone I've developed tremors, diagnosed with dementia, sjogrens and hypothyroidism. I'm on 15 meds & 5 OTC supplements/vitamins every day, some taken multiple times, and there are as many "as needed meds" too.
Yes my hubby was difficult up until last year, when I got so tired of arguing with him about my diagnoses and pain or why I need all the meds. He seemed to think it I'd just come off all the meds I'd get better. I made him go to various doctors and told him he could discuss anything with the docs. He put his foot in his mouth with nearly everyone of them scolded him. And they educated him on my illnesses and how they won't go away. Ever since he's been almost the ideal mate. I said almost. Lol.
Every now and then I have to bring him back to reality. For instance, I have to go to Mayo in Jacksonville soon for the tremors, dizziness, and memory issues. We were online trying to find an affordable hotel. There are two on the Mayo grounds, and they were as expensive if not more, considering amenities. I convinced him we needed to stay near the beach so we can get some enjoyment and relaxation out of the trip. He wanted to stay at one a block from the beach because it was much cheaper. I reminded him that the effort to walk that one block would leave me without strength to walk down to the beach. We ended up with a oceanfront room that includes the hot breakfast, for only $18 more/night. The point of this story is, he still forgets I'm not the same as I was 1-2 years ago, let alone 5-6 years ago.
So yes, we all will still struggle with others who are healthy. Being healthy, out of sight is out of mind, so they frequently forget. I try to find humor to help me through. So many on here have offered new suggestions and alternatives, compassion, hugs (e-style) & prayers. I'm terrible at remembering names and faces, always have been, but everyone here is wonderful. And there are many I've felt a natural connection and closeness to. I feel like this community is a large family, group of friends. It scares me to think where I might be if I had not looked for a way to track my pain last year, finding this app. As others have said, it's a God-sent blessing. I hope you find the compassion, shoulders to cry on, & ears to vent as helpful. And let's not forget the knowledge. Welcome again! I'll keep you in my prayers. 🙏🌼
I'm new here, also. But I'm not new to fibro. I was diagnosed 8 yrs ago after sustain an injury and having a failed back surgery. Sleeping has been a source if stress ever since. I also take sleeping meds, but they don't always work. Last night, for example, I got Just over an hours sleep. I'm on ssd so I'm home, there's no way I can work right now with the severity of the pain. I look forward to sharing information and talking with others that are fighting the same battle. Gentle hugs
DawnM113, welcome to our community family. That is what I consider this wonderful group of caring, compassionate and loving people who all have walked in each other's shoes to a point. The understanding you receive and the selfless guidance, prayers and love is overwhelming. I am blessed that I found this group because it literally helps me to survive. It helps ME greatly to be here to help others and not to focus on myself. I hope that you get what you need being here with us. I will add you to my prayer list.
Thank you flappylady81, a welcome is always helpful. I have tried many, many groups in the past and never received a warm welcoming. I always thought it was me and my husband's words were coming back to haunt me. I also take several vitamins and suplements to help combat this horrible disease. But I do what alot do, have a couple good days and cram everything in and then I am out for 5 days. I really need to find a balance. Maybe start a journal, if I can remember to write in it. Lol.
Welcome to our growing family DawnM113! I'm sorry to hear your back surgery failed. My fibro started about 7 years ago, in the midst of a tumor growing in my pelvis, which threw all my inflammation out of bounds. Because they missed the mass for two years I have a lot of complications. So I understand botched surgeries and the aftermath. I hope you find the support and comfort here as much as the rest of us. AlwayZ covered a description well.
Renae, we all over do things but I think it's because we subconsciously forget we have chronic pain on our good days.
I wish everyone a very peaceful and healing sleep tonight! 🙏🌼
I want to welcome all of thr new people to our chronic pain family. You have came to a place where there are so many compassionate people, who truly care for each other. You can rant and rave all you want it's a non-judgmental place. We have all done one time or another. I hope everyone has a Blessed night with as less pain as possible.
My husband won't go with me to any of my appts. He hates my drs. Yes he thinks of I stop taking everything I will go back to normal. I just laugh. What is normal anymore??? I had a seizure a while back and the Neuro walked in and I asked her to explain to him what was wrong with my brain. So she did. And he still didn't believe her. He thinks I have all the doctors conned into thinking what I want them to think. Even though a eeg showed the abnormalities in my brain. And a rheumatologist diagnosed me with fibro yrs before the epilepsy. So I just stopped telling him about my health and meds all together. What's the point. The sad thing is he has my oldest son believing that I am crazy and all wacked out on drugs.
That is truly sad Renae. I will pray that God opens your son's eyes and heart to the truth, and the same for your husband, that he will see your pain as God does and become the compassionate husband he should be. I will ask God to give you strength and courage to stand up to him in the name of truth. If God is for us, who can stand against us! ((Hugs))! 🙏🌼
Renae, how truly sad that your husband won't go with you. I would tell him that you understand he hates doctors but if he loves you, he can sacrifice some of his precious time to hear what the doctor has to say. I hope that you don't take offense to what I said, just my loud mouth opinion. Best of luck and I'll keep you in my prayers.
I know how u feel renae my boyfriend always tells there is nothing wrong w me I was told I had fibromyalgia like two years ago and it has got worst and just a little over a month I was told I had lupus he gets mad because in the evening around 6 or 7 all I want to do is go in my room and lay down because I feel so tried and all he wants to do is fight w me about and say there is nothing wrong w u it drives me nuts when he says that because for a little while he had me believe I was crazy and there was nothing wrong w me so I know how u feel
Welcome LauraV. Coping is something we each have to learn because no 2 of us are alike. When I joined the community last year I began to read and try new things mentioned by others. I've learned not everything works for me but other things do.
Due to a large amount of med allergies I am very limited on strong pain relievers. I can honestly say that most of my days my pain is between 4-7. I generally have 3-10 days/month where my pain is above a 7. I haven't been at a level 10 in over a year. I think it's because my method of coping works fairly well.
My fibro started in 2008-2009 but wasn't diagnosed until 2012. In 2010, after suffering two years of abnormal bowel changes and abdominal pain a doctor found a mass in my abdomen (para ovarian cyst). During the time my inflammation levels were extremely high. I believe they have contributed to my continued health problems. I've had OA for decades, but this year alone I've been diagnosed with Sjogrens, hypothyroidism, and dementia. I have many more issues but these are my newest. I quit my job in 2010 fully expecting if return to work within 2 years. My reason for telling you this about myself is because many in the community have progressed to develop other issues, especially in the autoimmune diseases. Some within short periods, like me, and others over long time.
Joining this community gave me hope, support, an outlet for my frustration or anger or depression. Everyone understands chronic pain! No healthy person can. But being open with family and friends is the best we can do to help them. The community says we are never alone to cope through!
After getting help to sleep better without sleep aids, which I was dependent on, I have much less sleepless nights. When I do it's because of pain. My psych doc ran blood tests which showed my natural serotonin was to low, so he increased the antidepressant until it leveled out. I have learned to rest when my body says to. I don't let myself overdo anything if I can help it, sometimes it's not in my control but the doctors. I eat a balanced diet, which I'm trying to cut back on sugar and starches now. I go to bed and get up at the same time daily, regardless of the amount of sleep the night before. I use a cane, walker, or motorized carte when I need to. I ask for help instead of trying to do it on my own. I cry when I needed to, because crying is like a stream valve... It releases pressure. And even on my worst day I try and find something to keep me thankful and positive. My faith and beliefs that God loves me and is helping me through all this is my biggest coping mechanism. I've spent over 40 years praying, for myself or others that are hurting or in need. It's my way of keeping others in my thoughts.
I hope that you'll find ways to cope, reading advice from others posts, and also know that aren't alone to do so. Hugs & prayers 🙏🌼
Thanks Flappy. I also had to quit working in 2010 becausr of stress it caused and my body couldnt handle it anymore.
One question on sleep patterns...mind if I ask ehat helped you? Insomnia and daytime fatigue is one big issue ive been dealing with for over a year now. What helped you? I know we all respond differently to different things but aleays willing to try something new. Thanks for sharing your journey.
Also a Christian and my faith and prayer is a huge part of my life. I pray daily for strength and healing for myself and orhers who suffer. My mom has MS and we support each other greatly. Blessed for that and a supportive hubby.
LauraV, It was a combination of things. First I prayed asking Good to help me sleep better and get over the Ambien, because it was causing side effects. I was weaned off the Ambien (8 years of using it), by using my antidepressant & melatonin (whole tablet, 5mg), then to half a melatonin (2.5 mg). I changed insurance & doctors the first of the year, going back to my previous doc, a Christian psych who doesn't believe in over medicating. He ran blood labs showing I didn't have enough serotonin, and my D&B vitamins are deficient. Because of the deficiencies I started taking supplements. But I can't just take OTC B vitamins. I have a genetic defect (MTHFR gene) that prevents the absorption & metabolization of B vitamins so I take a more natural form (Deplin/L-Methylfolate). I also have trouble metabolizing benzodiazepine meds, hence my adverse reactions to so many meds. I cant take the newer antidepressants. Serotonin reuptake inhibitors overdose me severely.
Anyway he increased my antidepressant twice, to triple the amount. Surprisingly I'm only taking 75 mg of Pamelor/Nortriptyline, but it's all my body needs to level off the serotonin. Pamelor is an old antidepressant but it works for me without having to be goofed up. I'm blessed because when I had a total breakdown in 1989, I was put on 200 mg, and I stayed on it six years.
Serotonin helps with pain and nerve receptors. Having pain at night was my biggest issue with lack of sleep. I was constantly waking up to change positions and stop the pain. We also bought a wonderful inner spring mattress with a 6" memory foam top built in... Expensive but worth every penny! I also replace my pillows, on average, every two years. Due to my neck surgery when my pillows start decorating and not supporting they have to go.
Now (5 of 7 nights avg) my pain is a tolerable level at bedtime (2 hr after I take the med), but if I'm still hurting because of increased activity I take a Tramadol and use voltaren gel. I go to bed and get up on a strict schedule just as if I was working. When I'm tired I rest, even nap if I need it. I completely avoid caffeine after 2 pm, and high sugar foods too. I avoid upsetting news after 7pm, scary or intense shows or books even. I record and watch those shows during the day. I noticed watching shows like CSI or things like it would cause broken sleep due to nightmares. I make sure I only do, see, or hear relaxing/comedy things before bed. If I'm upset or stressed/anxious for some reason I'll turn on my radio or TV to Christian music and go to sleep with it playing.
I'm 53 and I've had chronic pain since my first neck surgery in '92; 23 years and it's only going to get worse. Some of the pain I have I accept as just age related. I remember my mom and grandmother hurting at my age. They're both gone now. I've had so many flash back memories of them then, and how they had courage or struggled in silence. I want to be as brave as they were, to set the same type example for my grandchildren. I try to keep a positive, grateful outlook of my life, but sometimes it's overwhelming. I am so thankful for everyone on this community! It's wonderful and awaiting knowing i can talk to others who understand the pain. And it's here that i get lifted up... Even on my sleepless nights. Sometimes I feel I don't do so well, but at times like that I remember grumpy cats saying, "If you feel you are going to fail you are already half way there!" I still have sleepless nights or broken sleep, but I try not to let it upset me. If I remain calm I do better all the way around. So in essence, changing my attitude about my sleep and pain, along with the physical and meds changes have all contributed to better sleep for me. Accepting that my pain is going to be present the rest of my life, that I will have bad days and nights, that I can either make the best of what I have or I can let it take my life from me... Staying positive is my key asset to pain control. I hurt every day. This morning my sciatica flared up, apparently from a sleep position. I rubbed in voltaren gel and took Tylenol Arthritis. It's not gone but it's better.
Sorry for this long post, but there really isn't one simple thing I did to sleep better, it was many steps I took. I hope and pray everyone can soon sleep well most nights! 🙏🌼
Did you guys see that the government is gonna try and regulate opiate perscripts that the doctors give out. Its means that people with cronic pain will no longer get there pain meds that they need, they will be refered to treatment to get off them and them other forms of therapy for there pain.
I can't take opiates because I have chronic migraines and they cause bounce back migraine headaches. So I can't take them. Nor can I take advil or Tylenol or anything like that because it does the same thing.
@flapylady. You are brave just like your mama and grandmas was and I feel that the C.M.P family looks up to you and ( my brain isn't working right now so if I don't say your names I'm sorry your all important to me ) and other old timers in the family for yours wisdom and kind words and know how's so thank you for all you do
Lol... Thanks Eddieray, I think... Not sure I'm ready for the title of "old timer." 👵 I'm sitting here laughing so hard I can't type, keep having to correct. But truly, thank you for the compliment! I hope you & everyone has a peaceful night & Sunday. 🙏🌼
Well today woke up in alot of pain and stiffness, oh do my joints hurt. I feel like someone beat me with a 2×4. Pain meds help a little on days like this. You know and I told my husband I didntbwant any kids over this weekend and I have 3 extra here. Its a loosing battleing I feel so lost on both ends. And no he doesn't held with the kids, he sat outside last night around a bon fire and drank. No wonder I feel like this today. Sometimes I just want to run away.
@flappylady I'm sorry I didn't mean that you are a old timer because of age your still young , I ment that your a old timer on this site and I hope I didn't dig my hole deeper thanks and sorry again And besides I've got your age plus 7 years on you I'm 60 this years
Flappy, thanks so much for sharing! I have wondered about my melatonin and serotonin levels. Need to test meds to see if it helps. You are exactly right that a positive attitude makes a huge difference!!! I get in a funk and get depressed and sometimes let my pain control me. Having a support group helps me to realize that I am not alone and need to make the most of it when I can. Thanks for the reminder!
Eddieray, I wasn't offended at all. I thought it was hilarious!! I feel old, especially with all the nations I'm taking.
LauraV, glad to help. That's what's so good about this site; sharing info that could lead to better care.
Renae, I'm so sorry you had to deal with the extra kids, especially by yourself. In today's time with both men and women working, they should be equally sharing responsibility for house and kids. You're likely right that him not helping likely made your pain worse.
SherryWallett, my daughter is in the same position. She's the one taking care of her steroids needs while their minutes splurge their money for fun stuff.
Well with my husband not believing anything is wrong with me, even though he has seen me laid up on the couch for days and even seen me have a seizure. He still don't believe. He goes on with life as normal. So the stress makes my fibro worse. I have thought about leaving many times, my two oldest won't come with me. So it would be just be me and my youngest. My health would get better. But then I would have to find out a way to take of us. But today I am feeling a little better. I have alot to figure out. I pray for all here.
I know how it is when ur partner doesn't believe and just acts like it's just a normal day but yet it hurts for u to move or in my case my fibromyalgia could me giving me a spell then it will tiger my lupus so I have a spell w both at the same time and they just can't understand because there not gong tough it
I'm new here too. My main stress besides the constant pain is not having the money to see the doctors like I need to. I've been to my rheumatologist one time to do all initial testing and still owe over $700 before I can see him again. Now throw in a neurologist and major tests. No telling what I will owe him before I can see him again. It is SO overwhelming.
I am blessed to have a supportive family, I feel so bad for those of you who don't have that. It breaks my heart to hear those of you who don't have that support. That only makes pain worse. Just know that you have us to give you the encouragement and caring you deserve! Hugs to you, 😚