I’m confined to my bed for the moment. I’m fairly certain my boyfriend is about to walk out of here. He is so supportive and all I can seem to do is ask more and more of him and then turn around and act ungrateful because I’m in a bad mood.
I’m in too much pain to do much. I’m OCD so just laying here is hard- the laundry and dishes are piled up, the bedroom is in serious need of a good dusting, and the boyfriend missed that corner of the room over there when he was vacuuming (like, how dare he!). These household defects are only the most glaring. There are a million things that need to be done and I don’t have the energy (or the pain tolerance) to do any of it. The only thing I’ve managed to do somewhat successfully is going to work. I’ve only called in a few times at this new job (2 in 2 months is an impressive feat for me). The winter weather last week meant I got a few freebie days- no pay, but at least I got some rest. I have to go to work tomorrow, knowing that I will spend most of the nine hours on the verge of tears. I can’t afford to lose this job. I can’t afford to survive while I wait for a disability determination. I’m between a rock and a hard place and it is a miserable place to be. I’ve had multiple break downs this week. I’m at the point where I don’t see why I should keep going. I’m about to give up.
Hillary, you can’t give up. I’ve read your profile & you have fought your way thru some really difficult situations & managed to make it to the other side. I can relate to what you are saying about having a short fuse when you are in a lot of pain. It is something I have to understand when my husband snaps at me or is just disagreeable. If I really notice, I can see the pain in his face & in how he moves when his back acts up. He has to understand when I am short & snappy to the point of being hateful when I am in a bad flare & everything hurts, I can’t sleep & I have to go to work the next day. I finally have learned that it doesn’t matter that he doesn’t fold the towels the way that I do; it doesn’t matter that his idea of vacuuming the house is pretty well hit or miss. What matters is that he tries. He does it because he loves me. Your boyfriend does what he can because he loves you too. Sometimes the real problem is that we don’t love ourselves–especially when we have so much to do but we can’t because everything hurts. And the one we lash out at is the one that is there—loving us, helping us. So you can’t give up. Somebody must really love you to be there as your rock of support when things go south. Have another good talk & let him know how much he means to you & how you don’t mean to lash out at him. Hillary, that’s the pain you are feeling that comes out like that. You have had fibro since a teenager. I cannot imagine how tough you must be. Talk to your doctor & let him/her see the pain you are in. I know you don’t want any problems taking pain meds & may be hesitant to even take anything, but it doesn’t have to be all or nothing. Are you able to sleep at night? I can see that you are under a great amount of stress. All of these things tend to make our pain even worse. Hillary, you are a strong brave warrior in this fight and you cannot give up. It’s just not in you to give up because giving up is giving in & FMS hasn’t won yet & won’t. I admire you in your struggle & pray that you find peace & sleep well tonight. Tomorrow is Monday & we start a new week all over again. Talk to your boyfriend; talk to your doctor. You don’t know me but I really care. We are sister soldiers in this war against fibro & you will win this fight.
HUGS from Deb
Thanks Deb. I’m hoping this new doctor will actually listen to me. My previous doctors tried a few meds, but never really seemed to want to make an effort to find something that works. I’m calling a pain management doctor (I don’t know why I haven’t been to one before other than the fact that my previous doc never suggested one) first thing in the morning. Something has got to give.
My boyfriend is a saint. I try to let him know that as often as possible. I just hate that I can be so unfair to him. It’s like when the pain comes my ability to reason leaves.
I’m curious about others’ experiences with pain medicine. Tramadol and NSAIDs are a joke right now- I’m taking them but they do no good. Is Vicodin a fair medicine when it comes to relieving your pain? Do you feel comfortable driving or working when on it? How about other medicines?
Well, Hillary I don’t have any experience with other meds. I am severely allergic to most all pain meds. While in the hospital when I had surgery for a blown out disc, the doctors were really challenged to find anything that I could take. They gave me Nucynta which did help for the back/disc pain. The Tramadol helps me now. Tizandine is great as a muscle relaxer. Hillary, who is treating your fibro? A rheumatologist? PCP? I wish for you to have a partner in your healthcare & management. I must have one of the best PCPs in the world. I am afraid that a pain management doc/clinic will not really listen to you & just throw pain meds your way. How are your sleeping? I don’t handle the pain of FMS/arthritis & the stress of getting up & out to work all day 5 days a week well at all when I am unable to get my sleep. That point is key. Please keep in touch as I do care how you are making it. You don’t realize that you at your young age are an inspiration for those of us older folks just recently diagnosed with fibro. I know that we both have to try to get some sleep to start our Monday & I am sure going to try to sleep. You should do the same. I will say a special prayer for you, Hillary. I have faith that you are going to get better & soon!
HUGS from Deb
I’m so sorry to hear what you’re going through…
you need to keep going cause what your are facing may pass in time, if you get the disability that will allow you time to get try and get on top of this. It will also allow you time to heal not what any of us wants for our lives, but sounds like you are in a hard place just now im sorry. Take it one thing at time rest up
I guess we are headed to the ER. Primary can’t get me in for another 3 weeks. Closest appointment (I’d have to pay out of pocket) with a pcp is a week. Called rheumatologists, pain management docs and no one will see me. They are either booked solid or require a referral (my insurance doesnt, though, and is it my fault that my doctor hasn’t referred me to a rheumatologist for the 7 YEARS he has been treating me for this condition?!). My insurance company has me on a 250 minute hold. that’s right, a 250 minute expected wait time.
You’re doing the right thing to try to get some relief. Tell the ER that you have to wait several days to see your PCP & the pain is such that you can’t go that long without pulling your hair out! See your PCP when you can or try to get a recommendation for a good rheumatologist. When I say good, I mean one that does recognize that fibro is for real & will treat you accordingly. Please keep us all in the loop. We really do care.
HUGS from Deb
Hillary, think of it this way -- leaving the household defects alone is actually helping you overcome OCD. Really, that is how it works. Give your boyfriend a hug, tell him you know you have been difficult to live with lately, but that you are so grateful for his presence in your life, and that he is wonderful. At work, breathe. Inhale. Exhale. Don't try to tackle every challenge at once. Pick one, and work on that. Don't aim for perfection, but for progress. Hang in there, Hillary, you can do this. And don't forget to phone your doc. Hopefully, your pain will be better managed soon.
I have a friend here, who was confined to her bed for 10 years, she is now able to come and go! Don't lose hope Hillary, hang in there!!! xoxoxo
The er is running a bunch of useless tests. They don’t listen! I knew this would happen and I came here with high expectations. But I get to pay 98 dollars for a pregnancy test so… yay? They gave me 2 mg Ativan and 2 ultram. So now I’m groggy and angry (still anxious thanks) and still in pain. Just got done with my chest xray and ekg. I’m not having a heart attack (big surprise there).
I love the support and hope you guys have been giving me. it helps to talk about it with people who care and know that there is hope and there are options for me
Hang in there girl–they just checking everything to make sure what it isn’t. The ultram (tramadol) is what helps me keep my pain in check. If you walk out in less pain & a prescription to tide you over until your doctor visit, then that’s a good thing. Keep us posted. HUGS from Deb
The tramadol usually does the trick. Right now it is not helping me to be functional, which is my ultimate goal.
I’ve called every rheumatologist and pain specialist in a wide area and can’t get in any time soon or they won’t take me bc they don’t do fibro.
Maybe it is time to hand this stuff over to you-know-who. Perhaps I’ll be stuck in bed this week and not make it in to work. Who knows. would yall go to work in your biggest and worst flares?
Hillary, I have been to work while in a flare but eventually it wears me down. It usually starts with pain that keeps me up at night, which adds to my stress, then more pain, no sleep-a vicious cycle. I know that this is a new job; do you have any sick or vacation days that you can use to get thru this flare or at least get some rest/sleep? When you left the ER, did they help you in any way at all? Praying you get some relief quickly–HUGS from Deb
Hi Hillary, I am really sorry you are going thru this. I hope the ER is able to get you some relief to break the pain cycle. Regarding working during a bad flare, only you can answer that. I am really stubborn and I usually try to continue my normal routine as much as I can (including work) during a flare. I find that keeping a normal routine helps me stay distracted from the pain. I do try to get extra sleep during that time and sometimes I do have to modify my work schedule or take time off. I listen to my body but also try to not let my brain make the pain feel worse if that makes sense. Please hang in there and keep us updated on how you are doing. Hugs.
My name is Joni, please pray for me, I am in so much pain, between fibro, dizziness, trying to work in pain, I really don't know what to do. I would love people to understand and talk to me. I was invited to this group. God at least be my friend.
Hi Joni, I am sorry you are having a tough time. It would be good if you post this as a new discussion so people will see it. Hugs!
Joni said : My name is Joni, please pray for me, I am in so much pain, between fibro, dizziness, trying to work in pain, I really don’t know what to do. I would love people to understand and talk to me. I was invited to this group. God at least be my friend.
I am sorry you are in so much pain. Please consider posting an introduction, so others can get to know you. Also, if you haven’t yet, please check out our Fibro 101 guide as it is really helpful.
My name is Joni, please pray for me, I am in so much pain, between fibro, dizziness, trying to work in pain, I really don’t know what to do. I would love people to understand and talk to me. I was invited to this group. God at least be my friend.
Sorry you are in so much pain and hoping you can get into see a doctor soon.
lots of gentle hug and hang in there. we are all here for you.
Hi Hilary, I wanted to check in and see how you are doing? Sending gentle hugs.