Good evening or should I say morning cause it’s like 1:30 am. Can’t sleep too much pain. Can’t go watch tv out front, house guest sleeping on the couch. Can’t get up and walk around I’ll wake my hubby. Heats not working neither is ice. Lying here in bed fingers going numb like they have fallen asleep, reading everybody’s discutions thinking how unlucky we all are to have such a painful life changing “syndrome” that f*cks us in every possible way. From the pain we feel,to the way we think, to how we act, to what we do, to how we hardly sleep, to the way others think about us. All the symtoms are bad enough on there own. Add to that they fact we have to try proving are pain to others. How can you prove something there is no proof of. I spent the past 7 years of my life basically being told nicely i was, or treated like I was a hypocondract. Shoot to be honest I was begging to think that of myself too. So hearing there was a name for what I had was wonderful to hear, at first. Then with all my research I realized holly crap I do have this. The more I researched the more I realized they no nothing about fibromyalgia. Everything they know is educated guessing and what ,we with it tell them. And because there is no test, no visual sighns, just a bunch of symtoms we all have, alot of people don’t except it as a real thing. Some of these people are drs, some are friends, some are family members. We have this terrible life sentence of being tired and in pain yet very little of the understanding or sympathy we deserve. If I had cancer and was tired and worn out. People would tell me to rest. They would pray for me. They would make dinner for my family, and would pretty much do anything and everything to help. Infact they can even cure cancer.cancer it’s a terrible horrible illness that I would never want for myself or even wish on my worst enemy. But I don’t have cancer I have fibromyalgia. When I’m worn out from terrible pain and lack of sleep. I’m told what are you going to lay in bed all day. I’m a 38 year old mother of a 7 year old boy and a soon to be 5 year old girl. I am a hairdresser and a house wife. That’s right I do both I work part time from home doing hair while I take care of kids and home and hubby all at the same time. Same time meaning I don’t get anytime to take a nap. I don’t even get to sleep at night cause I hurt too much. Yes my husband actully says this to me when I finally get a chance to lie down for a minute cause he just got home from work. Stupid me in all of my pain and egsastion I feel guilty and get up and fold clothes a cook dinner, or anyone of my billion things I should be doing. This makes me mad, dosen’t it make you mad?. I am still treated as a hypocondract, are you? What can we do to get the sympathy we deserve so we can take a nap in the middle of the day with out being treated like a lazy person! Anybody out there feel this way, or have any suggestions on how to fix this?
Dear Cindi,
I feel your pain and anguish. I understand. You are so right in how you feel as far as how we are treated. There are no get well cards, no pitching in to help, no meals brought in to help you out. I believe I can speak for many in saying that we understand how you feel because we have been there, or are there.
Here is one of the best articles I have found explaining Fibromyalgia, it is unfortunate that we do not have a famous spokesperson to bring a better understanding to others as far as what we go through.
http://health.nytimes.com/health/guides/disease/fibromyalgia/print.... Now, if we could just get others to read this, and believe that it is very real.
As I have mentioned before, this is a very complicated condition. Doctors cannot agree on a definition or explaination. The commercials for the few drugs recommended for Fibromylagia imply that if we take this drug we will be fine, but it is just not always the case.
The stress of trying to keep up with a fast paced life while suffering from this, only compounds the problem, and makes us worse, sometimes much worse. Many seek professional counseling, it can help to deal with the chronic pain and the insulting remarks and behavior of others.
I hope that you are under the care of a good Physician, who does all they can for you, perhaps you could ask your husband to go to the Dr with you, so he has a better understanding of what we go through.
Wishing you well,
SK
My Rheumatologist explained 'fibro fog' as being caused by chronic pain, and lack of proper sleep due to chronic pain.
Sk, thank you. I’m sorry that you can relate because it’s terrible to deal with, but I’m happy to know there are people who can relate. I will read the article, hopefully I can get my husband to too. I will say that my husband did let me sleep in today he took kids and house guest to breakfast. Gave me time alone. Guess after him rolling over in the middle of the night, morning to find me wide awake told him I needed a break.
Cindi,
This is a really hard situation to live with, but you are one of thousands of people who have been afflicted with this condition. It predominantly affects women, but men have it too. You are not alone by any means. It is a very frustrating process that we all have had to go through, and still continue to go through when it comes to acceptance of our illness by others.
The attitude in the medical community is slowly changing and fibromyalgia is being recognized as a real and devastating condition. As yet, there are no magic bullits to cure it. You must first find a physician who believes in you, and is knowlegeable in this area, and who can look outside the box, and not just load you up with prescription drugs. Along with your other physicians, I have found that having an integrative/holistic MD or practitioner is a major game changer. It was for me and I still have a rheumatologist and family doctor who help me too.
Your husband does not understand as most people, so it may take time for him to be educated on the subject. You, along with your doctors can help him with that. It takes time and patience. You might want to take him to the doctors with you so he can participate in the learning process. That way he knows it's real.
We are here and can give you the support and understanding. We all need that. Try to give your husband reading material, or read it out loud to him. Some men don't like to read medical information. :') I've noticed. Learn everything you can about fibromyalgia and autoimmune diseases. This is a very huge problem that is growing in the population, so don't feel alone. Researcher haven't figured out exactly all the details but are discovering new information every day.
Try to keep positive and take some time each day alone to quiet yourself down and relax. I know it would be hard to do with two small children, a house, work and a husband who doesn't quite get the picture yet. Things can improve as you find ways to adjust and manage in your daily life. Above all, do not feel guilty, you did nothing wrong to cause this and if you can't do everything that you used to do, others will have to learn to accept and respect that. Don't push yourself, it makes fibromyalgia worse.
Good thoughts your way,
Ally
Been there, done that, got the t-shirt! LOL Just came back from an overnight stay at a hotel in my hometown. Ugh! What agony! My hips are killing me. I am so glad to be back home in my squishy bed. After the month I have had...I deserve a right to laze around! I had 3 colonoscopies, 2 mammograms (and an ultrasound), an emergency CT Scan and I swear a vat of blood for testing. My right arm looks like I got beat up! I have bruises all up and down it! I probably look like it too! :-) Found out among the other illnesses I have I was officially diagnosed with Ulcerative Colitis! So more pills and meds that I have to take rectally....yuck! On top of it all, as I was typing this, my husband, who is going through a personal injury claim from a car accident (he now has a Traumatic Brain Injury from it and I have to drive), accidentally missed a deposition! I have been sick all month and we totally forgot about it! It makes us look like morons! WHATEVER! I feel crazy! Totally out of control of my body, my life and my surroundings! I can only do so much! I am on the merge of tears, I am so frustrated! I don't know what to do! I know...the answer is nothing! The date has passed, now we HAVE to be at this NEW time and date! I feel totally out of control! How did this happen to me, to my life? I feel sick!
Cindi
What a dreadful comdition this is. Fortunately I live on my own, I say fortunately because I would, like you,if I lived with folk have to help those around me, and it would do me substantial damage, and give me much pain. I only just manage to look after myself, I am not able to work, and had to retire after a life time of full time work because of this comdition.This on line support helps in a way no other source can, and having so much connection with folk on line this year I was amazed when I had a recent hospital experience when no one understood what I needed. They all thought that they knew what fibromyalgia was but none understood what I needed, and it made me realize that I had got used to this group and twitter who so readily understand. frustrating it is, but I have written a book that I hope will be published in 2013, in the last chapter it really fully explains to health providers where the literature is at and what it is like for us. I intend to send a copy of the book to relevant people in the local health service in the hope of spreading the word. In my opinion one major problem that we have is the label, fibromyalgia, means nothing of any significance and does not reflect the nature of the condition. I used to be a nurse academic, so what I think is needed is education, education, education and of course research. Take care and know that you are not alone. Barb
Thanks ally. I wish non of us had this but we do and it sucks I just get angry for all of us. And I am new to this syndrome. I’ve suffered with is for years but I didn’t have a name for it. Now I know and just wish there was a way we could speak out and make it be understood. I hear Morgan Freeman, and Shanade O’connor suffere with this too. Wish we could get them to speak up for us people hear famous peeps.
Omg Wendy. I am so sorry you have all that stress in your life right now, that alone could make a person crazy. But on top of that you have fibromyalgia to make it all worse, and that being as bad as it is, the stress makes the fibromyalgia worse, making it more stressful, making the fibro worse. It’s like a endless loop of torture. It’s like our brain is punishing our body. Let me just say I feel you, I hope things ease up on you soon, so your brain will stop punishing your body for the stress your brain is dealing with. My heart gose out to you. I have true sympathy for you.
Thank you barb and thank you for writing a book. I often wonder what I could do to get some knowledge out there. You have done something. I want to do something too.
Cindi, it is being recognized a whole lot more than was before. Social Security Disabioity has now recognized it as a valid condition. It's just a game of "catch up" for the medical community and the general public. Now the challenge is that the researchers can untangle the complicated process that has caused the fibromyalgia symptoms to begin with. There are lots of theories like autoimmune connection, gene expression, toxins etc.
There are lots of discussions here on those topics. Don't give up hope, Alot of us on here try to keep up with the latest research and then post the information.
I've attacked my pain and fatigue by changing my diet, and that alone has made an huge difference and has lowered my pain and fatigue levlels. If you go to the "group" named Success Stories I outline what type of diet I follow, if you are interested in trying that. I do whatever it takes to give myself relief. I have gotten off all my meds. for fibro.
PBS channels have been showing alot of good programs on autoimmune disease and related conditions like fibro and chronic fatigue. I'm just finishing up a book that my doctor recommended called "The Autoimmune Epidemic" by Donna Jackson Nakawawa. It is very informative regarding these chronic condtions that are plagueing us all.
Yes, if famous people would lobby for the cause, that might result in more funding for research of these conditions. Would be nice.
Take care,
Ally
Oh Cindi, I feel your pain. I too was up most of the night last night. I'm alone now - my husband of 44 years died of cancer this past February. He was wonderful to me, trying to spare me work even as he was dying himself. I suspect that missing him at Christmas was the stress that set off last night's flare.
I wish I had an answer for you. The only thing I can think of when you wake at night with a really bad flare is to take an extra pain pill and then wake your husband and ask him to give you a massage. Perhaps after he sees your nightime agony (maybe a few times, some folks are slower than others) he'll be a little more understanding. The best understanding my husband got was when he got the H1N1 flu in 2010, and I told him to remember the pain because that's what I feel like every day.
Your children are old enough to learn to make simple meals, and certainly old enough to set the table, do the dishes, and fold laundry. While you sit and supervise, remember that you're teaching them important life skills. It won't be long before your son can learn to clean the toilet! ;-)
My Rheumatologist was the one who told me I had Fibro on top of an auto-immune disease. If you don't have a doctor that truly believes in the reality of Fibromyalgia, keep looking until you get the support you need and deserve.
BTW, the one good thing about being a widow with grown children is, I can pace the floors and scream and moan all I want on those really bad nights. Have you considered hiding in the bathroom - perhaps it will let you groan without disturbing others.
Peace, love, and a less-stress New Year to you and all the wonderful people in this group.
Thanks silicone valley. Sorry about the loss of your husband. I’m really finding alot of comfort in knowing I’m not alone thanks to this group.
Cindi
now I speak up even when clearly not understood, I believe that when others particularly health providers get it wrong I tell them. it doesn’t make me popular but might help the next poor soul with fibromyalgia get better treatment. So whereas before I didn’t have the strength, I now do and simply say it as it is. I am a believer in acting locally to bring about change globally. So unlike my usual self I now strongly argue my case for more appropriate treatment. I simply refuse to be treated badly. I don’t know if it will work but it beats the he’ll out of simply accepting the status quo. barb.
I have an idea sarcasm develop a really bad temper, start throwing things, hit someone, then go to jail for it. That’s what I did…ok, maybe the pain killers helped. I was so ashamed of what I did, I did not leave the house for 3 years. Since then, I have learned to focus on the positive. I thank God for what I can do and the health I do have now I have tremendous patience with others and I indulge in a little vindictive inner chuckle when my hubby is tired or hurts and he realizes that I have no sympathy. Ok…maybe I still have some inner work to do!
I so understand! Thank you for sharing. It is the first time I have heard someone else describe what I have experienced. It really triggered some feelings, but I’m calm again. These days, I don’t worry about what I can or can’t do or what someone says about it. If I can’t take it, I climb under covers. My loved ones did finally learn. My husband did learn that certain things make me work and certain things don’t. As my fibro fog clears up and I do more reading, I am better able to communicate to him what is happening.
You know, you word this greatly comparing fibro to cancer and how people react. I have/had the same reaction from people, even my parents and boyfriend. I think I finally have them understanding with that Letter To Normals. It can be downloaded somewhere.
I practically forced my primary care dr to give me the diagnosis. I had 4 other drs saying I had it, but the PCP had to say so. I told him I was not leaving until he did. He did. Then he dumped me from his practice about a month later! That’s okay.
I did not go to bed until 2:00 this am and was up at 5:00. I have not napped today because my boyfriend is sick, and I’ve been waiting on him. He basically overloaded yesterday, and it did not agree with his cholesterol med. yuck!
I can relate except to children. I can’t imagine how much they take out of you. I know you love them, but God Bless you all who have children. You are special people!
As for exercising, BULL… I’ve been worse for over 2 weeks for trying some stretches. I either fractured or bruised a rib. I don’t need a dr to tell me. But it is taking forever to heal, and this am I fell on my left side where the ribs are…
Fog… What did you say?
Thank you for sharing your personal feelings. I am angry about this illness and then feel like I am being petty and whiney because I am angry. This is all because of the things you mentioned and I think "It could be worse, I could have cancer or be paralyzed so I have no reason to complain or be 'lazy'" Until this disease took it away I was highly engergetic, positive minded, over-acheiving, "super" helper, mom, best etc. For several years now I haven't been able to ever feel like myself and feel totally well...........now I know why, Fibromyalgia. On my better days I am very grateful and try to enjoy life to the fullest, on the days when I have plans or want to make plans and symptoms stop me I get the anger and resentment and want people to just understand I truly CAN'T do the things I was doing 3 days ago. But they don't get it, and the resentment grows so I just continue to withdraw more and more from my friends and family because I don't have the energy to try and explain for the milllionth time what the disease does and why it is so misunderstood.
I am a therapist and am learning more every day how to practice what I preach to my clients about focusing on positive, and relaxation, and accepting that we can only do so much. I am hoping I can learn from this disease and grow as a person in order to be a better therapist. That is the only positive I can foresee at this point.
Thank you all again for sharing. Having a group of people that "gets it" is very healthy for me.
Clarice,
I'm an RN and I had to go on disablity because of my condition. I thought I understood the suffering of my patients before this happened, but only now do I truly understand what they were going through in their life. I can't begin to tell you. Sure I would like to be completely healed, but only if I know that I'll take what I've learned in the past fifteen years along with me. I'm not angry anymore. I see good in it. But I'll keep trying to heal myself any way I can find.
Ally
PGLOS lol, you have no idea how close I have been to beating the crap out of somebody for stupid reason like taking my parking space. Luckily everytime one of these feeling come over me my kids are with me. So the mother in me lets it go so my kids won’t see me beating the crap out of someone. 
it’s like getting mad is the only way to keep going. Like anger fuels me to continue through the pain. And this place is a great place to vent and be understood and people who can relate.
Shelia I’m in Sacramento California.