Hi to everybody, I know that all of you know that too much stress in your life just triggers an eposide of pain all over. My daughter and her three kids (8,5,4)live with me because of money reasons. I was forced to retire last year due to my fibro as I was not able to hold down my job. My doctor had to fight for me and thank goodness I didn't have any problems. I know for some people it's impossible to retire for Fibro but I have several other things wrong. Any way, due to the stress in my small house I rarely feel good. Several times a month I will sleep over 36 hours (with bathroom breaks) as I can't stay awake. I hate it. Nobody understands this illness, that I know. That is why I joined this group a few days ago. My family and friends do not understand why I feel the way I do. They are sick of hearing me complain so most of the time I just cry myself to sleep. I try not to feel sorry for myself, but I have to admit that I do as nobody understands. Today I am feeling pretty good, but tomorrow will be different, I never know. I feel so lonely. I do have mt cat, Tawny, she is a comfort to me and good company while in my room. I was curious, do any of you have times when you sleep 24-36 hours straight? This has been going on for years. Gentle hugs, Tawnycat.
Hi I am new here, nice to meet you. It sounds to me like you have depression.
I sleep like that when I am overwhelmed which these days is often. I have a very good therapist and I also go to group therapy as I am all alone. I have family but they are only moderately supportive and do not make enough of an effort to understand what is wrong with me. Do you have ability to get therapy? It's been helpful for me. I am here online because I feel I need the support of other patients suffering from same affliction and I also want to share support. Good luck, hon. That kitty of yours sounds priceless. I lost my kitty two years ago and still miss her terribly. She was there for me through a big breakup and my mom's death along with this diagnosis. Animals are truly wonderful..
Hi Laurie, I do have severe depression. But this is something entirely different. It is almost like somebody is drugging me. I literally can not stay awake during these eposides. When I was still working I spent the whole weekend sleeping so I could get up in Monday morning and go to work. Since I've retired I have these spells about once every 3 months. Thanks
Tawny, I have to agree with Laurie. Everytime I am depressed all I do is sleep, days of sleep. I get up and i fall right back to sleep. It's one theory atleast. Hope you find out what it is. Hugs, Robin
I understand. You say that you live in a small house. Last year you had to retire due to heath issues. Now you and your small house have been invaded by your daughter and her three children. Each thing alone is stressful, but to have all of them fall on you at approximately the same time is more than you feel you can handle. That is very understandable. But you feel obligated to accept them. In a small house there is really no place for you to just "chill" except your bedroom. It is necessary for you to be able to come home at any time and be able to "chill." The whole thing is overwhelming. I am assuming that neither you nor your daughter has a husband for whatever reasons. That is not something you need to share.
The long 24 to 36 hour sleeps were necessary when you were still working and your body has become accustomed to that time frame in order to get recharged. But I suspect that you feel uneasy now about these long sleeps. Don't be. Even though you aren't working your body is tellling you that it needs to get recharged for just the everyday happenings. Don't forget that your body is dealing with however many years of working and struggling to keep going. So, now your body needs for you to listen to it and sleep when you need to and just chill when you need to. This isn't going to happen overnight. I have a friend who is not workinganymore, but still she is in a lot of pain and not able to sleep more than a few(3) hours a night so she needs these long catchup sleeps. Sometimes my body needs longer sleeps. I have discovered that when my body needs sleep I must obey. Sleep is not a given when you live with pain. I am discovering that I must listen to my body and sleep as long as it tells me in order for my pain level to be reduced to a manageable level.
With the young ages of your grandchildren they are going to be noisy just being children. I don't have an easy answer for you but you must take care of you however that can happen. You need time to yourself so you can relax.
Hi Rachel, I know the reason I am depressed is I honestly want to spend more time with my grandkids but I don't have the patience, this really depresses me. At first being with them was the only thing that made me happy. My daughter has abused our terms for babysitting. Most nights she never even comes home! When I'm feeling bad and so so angry with her, I tend to not be as nice to my gc by yelling. I always want to be the nice grandma to be a nice place for them to fall after their ordeal last year with their father who abused my daughter in every way. I think he is still in prison. The state took his legal and parental rights away from them so they have been in pain over this last year, but they are getting better. That's why I feel so bad if I yell at them. I take 120mg of Cymbalta and 5mg of Abilify. When I first started the Abilify I could feel a difference the first day. After about 6 mo, I don't feel it antmore. When I see my doctor on Thursday I'm going to ask him for anothe anti-depressant. Are you taking anti-depressants? If so may I ask what kind and if they help you. I have ttied several medications, Lyrica and others but nothing helps. 1-2 vicodin a day seem to help a little. It just takes the edge off a little. My doctor hates giving them to me. Do you have any suggestions on medicenes.
Hi Tawnycat - My heart goes out to you, because you are describing me in so many ways! I had to retire as well because of my Fibro. My company was changing management and I chose that time to just get out and take care of myself. I truly sympathize with you in the fact that your family and friends don't understand what is going on with you. In the first place, they are NOT in your shoes and second place, they really need to become educated on what FIbromyalgia is. It's a very complex and complicated disease. We certainly don't feel any better when we have to explain over and over to people what we are going through. My 2 kids understand, as I gave them reading material, some friends understand, or try to and others can't be bothered. They believe in "picking yourself up by the bootstraps and moving on!" Let me tell you something, Tawny, I guarantee you, that if these people could be in our shoes for just one week, and feel all the pain we go through, it would bring them to their knees!!! Seriously! I do agree with you, everyday is different.When dealing with FIbro, there is no 'normal routiine' that we are able to follow, because there is something going on every day with us. One thing I have learned (and it was hard to do) about myself is to be very patient with my Fibro. I told others in this group, that I used to be the get up an go girl. Constantly moving around, taking care of my kids and so on. I was about 33 when FIbro first got to me. Of course then, doctors didn't know what was going on with me. They kept plying me with pain meds, when what I really needed was anti-inflammatory meds. It was awful not being able to be understood when I was explaining to the Medical field what I was going through. Through all this, out of frustration, I had to learn to be my OWN advocate. I had to get assertive and at times aggressive. This isn't usually my nature, but I don't have a choice. It is definitely the FIbro that makes you so tired and you sleep for many hours. People forget that we all need a decent amount of sleep, because during our sleep the body restores itself from whatever we did the day before. Fibro patients don't have this luxury. It's just a constant bombardment of pain, spasms, mood changes and so on. Our bodies are truly worn down. However, in the midst of all this, since I have joined this website, I am becoming confident and hopeful that Fibromyalgia will really come out in the open. I would love to see tv segments in this disease as well, and I think it will happen in the near future. As far as trying not to feel sorry for yourself......hey! It's okay to feel this way! You have been through hell and back. What's important right now, is we must speak up not only as a group but as advocates for what we are going through. It is up to us to get the Medical field to listen to us and let us have a voice about Fibro.
The good thing is, that I can already see it happening.....slowly, but surely. Don't be discouraged Tawny. We are all here to help you and listen to your concerns. The advice and suggestions that everyone gets on this website has, so far, helped so much. Stay with us and mentally you will begin to feel better that there are others out there that know exactly what you are going through. Take care of yourself, you are NOT alone!! Gentle Hugs, Laurie
People can have both fibro and CFS together. I'm wondering if this might be what is ailing you since you state that you sleep for 36 hours and just cannot stay awake.
As others have suggested, your fatigue could also be caused by depression. From what you tell us of your home life, it sounds like there are a lot of stresses in it and reasons to feel depressed. You have to be the Strong One for everyone but since you also have fibro, it's an impossible task to do.
There are many different anti-depressants out there so if one no longer works for you, there are an abundance of choices. It will help you to help your grandkids if you're feeling better about yourself. The right anti-depressant can really, REALLY help you in dealing with stress.
Please do come back here and talk to us! We do understand and will accept you as you are, fibro warts and all. It's almost impossible for a healthy person to understand the situation that we find ourselves in, so the next best thing is to talk to an unhealthy person - namely, anyone with fibro!
I do hope that by talking to us, you'll learn to accept your own feelings about your fibro and not doubt yourself. And that will hopefully help you feel better, in kind.
Tawnycat, oh god bless you, I am so exhausted when I send my grandson home even after 4. Hrs,
I sleep 10-11 hr every night, and spend most of my day feeling very tired, I’m begging to think I really need to start exercising, because my joints a killing me and the more I rest the more they hurt. My dr. Believes I may have CFS, if it wasn’t for the Savella ( it keeps me awake ) I prob would sleep like you, our body is saying I have had enough ! I was on the go for 25 years, never taking care of my self.
Having your grand kids there has got to be so stressful, please don’t feel bad, if my daughter lived with me I am positive I would spend most days in bed as well. I need quiet time, even when my mom spends the night I’m more tired, just having to interact with others can be exhausting.
I think you dose of Abilify is low, maybe they could increase it, or try the Savella, I also recently started Wellbutrin 150mg a day, between the two I don’t so much as close my eyes during the day, and I noticed when the Wellbutrin wears off like 10 hrs later ( it’s extend release ) I am out like a light and sleep 9, 10, 11 hrs. So I take it at 1 pm, by 11 or 12, I’m ready for sleep.
I hope you can work this out, I know if I spent that much time in bed my pain would be so much worse. I think it’s not just the depression, it’s your whole situation, that is so not fibro friendly !
Also I learned recently that a treatment for CFS is actually a stimulant like Ritalin, concerta, meds used for. ADHD, I am going to talk to my dr about it on our next visit.
Hang in there !! I don’t think it’s unusual to sleep that much, especially in ur situation, but I do think u should talk to ur dr about it, how is ur vit D level ? Iron ? Maybe your dr. Can check all your blood levels on things that can cause fatique ?
Do something kind for your self !
Hugs & many blessings
dee
There is a big difference between wanting to spend more time with your grandchldren and having them 24/7!!! Please try not to feel guilty because you have nothing to feel guilty about. Also, these children are damaged and abandoned by their parents. From what you have said it's obvious that the only time these gc have any stability and love is when they are with you. But you are sick and you need to take care of YOU. Believe me I know about grandchildren being abandoned and manipulated and abused because I have one.
Our medications are meant to work with us to help us deal with each day, but if we are not able to work with our meds then we may assume that the meds are not helping us. But knowing what we ought to do and what we are saddled with plus worrying about the future of your grandchildren and what your daughter is getting involved with keeps your body on constant overload. I so wish that I had an answer to your problems but I'm afraid I don't. You make the best of the situation.