...this is my first post and I can't be all cheerful and cozy, I'm sorry.
I am beyond frustrated at this point.
Seriously?! When will the pain stop? I took a shower today and the water hurt my back - nope, I do not have a high pressure shower, it's one of those rain ones. Water from the shower hurts!!
Everything hurts. It hurts all of the time. It doesn't matter if I'm in bed or up and around, it hurts. The lowest my pain has ever been since 8 October 13 is a 6 out of 10. I wake up at a 6.
The pain is so depressing! I can't chase my son around like he wants me to. I can't clean my house like it needs to be. Putting a load of clothes in to the washer hurts, but putting them in the dryer hurts worse because they are so heavy.
I'm going back to the doctor tomorrow because something has got to give. I can't live with this pain. I cannot function as I need to be functioning.
I haven't been able to work since 15 September 13. I'm officially a burden to my family.
Your son is very handsome. How long have you been on the lyrica some meds take awhile to get in your system? I was on Cymbalta for awhile and it did seem to help some. I hope the doctor can help you tomorrow.
Welcome to the group, I'm glad you posted! Glad you see the Doctor tomorrow! Start a short list, so you don;t forget to talk about something important! I usually keep a running list which includes meds refill, meds I'm curious about, and the problems of health at hand.
I read your profile about the surgery kicking this into high gear and hopefully your Doctor will give you something to break the pain cycle you seem to be in, no one should have to live with such a high and constant pain!
It;s not fair for anyone to have a chronic illness, but especially unfair to children and parents raising children! My heart goes out to you, wish I could do something to ease your pain and work load. I feel your frustration and pain, and recommend you ask/beg your Doctor to help you with this, or send you to someone who will!
Is it nerve pain? if it is, the Lyrica should be relieving some of that, I take 225 mg 3x daily and it helps all of the nerve pain, even the Sciatica, however it does not help my muscle or joint/bone pain. It leaves your system completely in 8 hours or less so I don't understand why not taken 3 times daily to keep it in your system? I'm not a Doctor, but it seems you should not have 8 hours without this med!
Sending some love, and hopes of you feeling better very soon,
Try savella. You sound like me before savella. It is FDA approved.
I feel very good 100 mg a day. I buy in Canada at northwest pharmacy. Ask for the triathlon pack.
Good luck
Hang in there love. It is hard to be in pain and be positive. Truly it is. Don’t get too down on yourself if you can. You may not be able to chase right now, but you can snuggle and read. You may feel like a burden, but maybe there is some thing you could take up part time/as available. Crocheting? Invitation design? Check out what there is on Etsy and see what people will pay for. I am working towards getting a photography business established as 90% of that is computer based. The house will get cleaned, or it won’t. And you know what, that’s okay! When we can, we have someone come in and clean, because my energy is better used elsewhere. It’s what my parents/family get me for special occasions. Do you know how to do basic tax / accounting? Maybe you could do a service exchange with a local cleaning service. So many options out there. Don’t wait on the drugs, 100%, push and advocate for the best QoL they can give you. For me Network chiropractic and Flexeral along with Celexa has been a god-send. Hugs and love in your direction. It will get better at times, just don’t overdo it when it does.
it sounds like a MAJOR flare. I recently had one, and they had me come in for a Toridal shot...got instant relief. flexeril also helps along with Neurontin and ultram. I do pray that you find RELIEF Cyn and get moving a bit again...I do know about lifting the wet clothes...very difficult for me too. hang in there...you have friends here that care....very gentle hugs, annie
Hi to everyone first I have to say I have not been on for a very long time until I read your post which struck a chord with me. I have been finding myself hiding out more and more at home now the cold weather is starting. I certainly can understand and relate to your frustration. I too have an extremely hard time controlling my pain and the fatigue is awful. I have not been able to work for 3yrs now and I cannot seem to keep up with my apartment. I am now a single mom with a 13yr old at home who needs me maybe a bit more then your average 13yr old as she suffers with a few mental health issues which has stopped her from having any friends and cannot attend a regular school.
I have not been coping to well lately I feel like a failure most of the time and I feel like an outsider looking in when it comes to my family. I struggle everyday to put a smile on my face as I have to when my daughter is around. I have to tell you though my favorite part of the day is at night when there is no pressure on what I have to accomplish in the day.
I'm sorry I was going to try to be supportive but unfortunately when I started to vent the flood gates just opened right up lol.
My point is this I try not to dwell on what I can't do anymore and focus on what I can, if I feel really tired then I lay down instead of trying to fight it. The cleaning well I just can't do it all anymore.
I'm going for counselling in Dec. hopefully that will help with my emotions and the feeling of being lonely all the time and the guilt I carry. I only wish you the best and you are not alone.
I think we all get on here and are downers at some point and we all forgive you it can be a completely miserable life sometimes. And yes water from the shower hurts and I’m on lots of meds for fibro and nerve pain. Until my RA got so bad this year that I can’t sit indian style and I can’t lean over any more I always sat in the bath with the water running and leaned my head over under the faucet to wash my hair. I’ve down that for years even before I had fibro issues. I wish I still could.
I hope your doctor helps and you find relief soon
Erin
Hi Cyn, I can truly empathise with the pain and difficulties you’re experiencing, I struggle to do those things and this morning I found washing and dressing my 16 year old disabled daughter almost impossible, I ended up in tears with the pain and my considerable amount of pain medication just isn’t easing things. Are you on any medication? I hope that your doctor is sympathetic and gives you something to help you a little at least. Take things as easy as you can but with a child to look after I know that isn’t easy.
Good luck with your doctor
April x
Please, don't just sit there by yourself and boo hoo your eyes out! You have every reason to vent, if not scream! It felt so good to get those words out. I only have one person that I can speak without using my "edit button" and I feel like that person worries so much about me because they are far away and cannot help, so getting my feelings out to other people who likely KNOW how I feel was good.
I have a doctor's appointment at 10:15 this morning and I will make sure to tell her everything, because as I said before, something's gotta give!
I would like to include you in my prayers if that is okay with you.
I've been on the Lyrica for quite some time; however, they just doubled the dose 4 weeks ago - I have felt no difference at all. I just started the Cymbalta, I think it was two weeks ago, so I know that it hasn't had the right amount of time.
It's just that I woke up a 1/2 hour ago and the pain is around my chest, abdomen, and back - basically my trunk - and it is a 6 out of 10 already. That doesn't leave much room at the top until it is excruciating. I have not wanted to ask for the Dilaudid they have been giving me since surgery - I'm terrified of it, but it does help calm everything down at least so that I can sleep at night.
Thank you for your comment on my son - I agree with you! He is my heart. He was a miracle baby as I was told by 3-4 physicians, "sure, you can get pregnant, if we HELP you." My God had other plans, while I must admit, I questioned his sanity when I found out I was pregnant. I literally said out loud, "You want ME to be a mother?" I thank Him every day he had other plans.
I can so relate, although I tend to have a fighting spirit with my diseases, and get the attitude of THIS IS NOT GOING TO TAKE ME DOWN, it still does, I have been in my wheel chair for over 10 days now, I know I have bouts of my firbro on and off but this one flare was relentless and has gotten the best of me, no sleep, fatigue, fibro fog, headaches, neck pain and my legs lets just say I wished I didn't have any, the pain there has been the worse, and not much I do was helping, my knees can't even touch each other, and my breathing has been off and scaring me out of breath so easy, just standing from a siting position has me crying out, literally. I told my hubby half way through this flare. I CANNOT LIVE LIKE THIS in tears, so defeated so tired, so much in pain and pulling muscles everywhere, heart is very jumpy and shakes in my heart area and my esophagus. (I actually didn't want to be here like this and told god if he wanted it would be ok) BUT NO! I don't want to die, I want to find out what, if anything there is that will calm my particular problems….t want to beat this and I'm finding a lot of hope is gone in doing so. But I just can't live with this horrible thing and just pray I find a little relief somewhere along the line, Arthritis is also out of control and my IBS and degenerative disc disease, all seemed to hit me at once and quite honestly I'd rather be dead. Those were my thoughts on my worst days, that was me…giving up! I battle the down days too quite regularly, I ask why? I pray for something anything to give me relief. it sucks. I am now coming out of my flare, the arthritis flare is not gone but the problems relating to the fibro are calming and I can't believe it, I am so welcoming these days even though I still can't walk great 1/2 the pain is going. I'm taking requip for restless leg syndrome and just began these, and I actually have stopped dairy for the past 10 days not sure if that has anything to do with it but things have been calmer between these two changes I have made. the last 3 nights I have actually slept not without knee pain but without the pain, tightening random things happening from the fibro, I slept for 12 hours :) I guess I'm coming out of this flare. it lasted a little over 2 weeks. I know other people go in longer flares and I hope I'm not one that suffers for that period of time, months of this? I cannot even imagine. I am starting prednisone as well as of last night, my arthritis pain is now ceasing, I went to bed around1 a.m. and had to wake my husb up and scream in delight that my pain in my knees/neck was subsiding couldn't' believe I was standing up straight instead of bent of with my cane, I said my god the prednisone is reallllly helping this now. I pray for relief to you too as it instills hope again. I feel your pain believe me.
Hi Strongmom(gotta love the name lol) You touched my heart with this, perfectly said even though it's very difficult "My point is this, I try not to dwell on what I can't do anymore and focus on what I can" what a great inspirational thought so the mind does not get away with itself with a lot of the 'troubles' we suffer from having Fibro. Your comment there hit home, I have not been able to clean my house in a few weeks, I start and get 2-3 things picked up and have to sit back down, I laughed and said well at least those two things are put away, now tomorrow I'll get another 2 lol I'm laughing but it really does suck and get you so frustrated, but I love what you wrote and am going to write that down on my fridge as a reminder. thank you for that. Sorry to hear of your daughters troubles as well, must be hard esp at that age. Counseling will be good to start with, your emotions are all normal, it is hard enough raising a teen (I raised 4 daughters! lol) in normal scenarios but you do it with these problems and all of this pain, and then her pain on top of it for what she is dealing with. I have said once before on here, even though I'm a newbie, I welcome the cry days, it rids all the toxins that build up and you can start fresh the next day. I love your quote! :) you should make pretty little plagues with this saying on it and sell it on ETSY, words of encouragement plagues. That would be great and I'd buy some of them. :) Pretty letter stencils would make the wording beautiful too, want to go into business together?lol
I have had almost everything hit me like a ton of bricks this past month, numerous illness's all seem to be in a flare and omg I didn't' think I could take another day, I have not had the water from the shower hurting yet :( But I do take very hot baths. I cannot take Fibro meds I've had reactions to 3 of them, cymbalta, avelox and one other so right nowI only take requip for restless leg syndrome (brand new) and IV therapy of 700mg of Remacaid I'm late getting it and was in a horrific flare of both diseases as well as other issues I am having, My Rheumy said the remacaid should also help calm the Fibro. I am just coming out of my flare and I couldn't welcome it more, I woke up with so much hope this morning and a smile even though everything hurts it is a lot better, only thing I've changed is cutting dairy out and taking the ReQuip. I began steroids last night to try to get relief from the arthritic flare I am also in and it took the sharp pains down, nice to be able to focus better today and have hope. I haven't been able to sit and get up on my own for a few years now, the arthritis is that bad and I got stuck in the tub 2 x's last week I could not get out and it was in the early hours of the morning so didn't want to yell for hubby. It took over a half hour of whimpering to keep trying and I finally did it but baths calm the arthritis so I don't know what I'm going to do now. I hope my nerve pain does not affect me like that for showers and I'm SO SORRY that ANYONE has to suffer with that too, so many things have been ENOUGH.
I am in need of 2 total knee replacements, but since my ankle was caved in to the floor they HAD to address that first, as I could never rehab the knee on the ankle I had with so much arthritic damage in it, so we did the Ankle fusion back in March, in April I was admitted to the ER with the news of "you have numerous blood clots in both sides of your lungs and a saddle clot" I never heard of a saddle clot andaske the ER nurse what is that and can I die from this? He hesitated and I in fear was looking at him and said, please don't sugar coat anything I need to know the truth here, and my daughter who was with me said my mom is a big girl she deals with lots of 'blows' medically so she can handle what you need to tell her. ANd he said honey you are in god's hands. He explained what a saddle clot does and said, after me insisting he tell me what happens when things go wrong, your heart is having trouble as the saddle is blocking two entries in to your lung he said your left lung is almost completely blocked, so your blood is pumping back to the heart and the heart will just stop if it takes too much of this. I said ok when 'bad things' begin from this do you have time to save me? Or do I just die, he said we will do all that we can and your in the best place…and I said….TY BUT do u have time to save me, his face said it all. Iknow I am a miracle most doc's I've talked to say they either, they have never seen a person survive a saddle, or 'aren't you the little miracle to be here today" I'm just happy God 'Said yes" to everyone prayers for me. Since this ankle fusion the life has been sucked out of me in many ways, Doc say's it could take up to a year with symptoms and allowing the foot to heal etc. I feel the wedges/screws i my foot it has caused a ton of upper foot pain and my toes have separated as well. IDK we all have so much to deal with and I pray for a cure or something to help calm these symptoms we all suffer from.
Hello everyone- I hope you have tried Savella- I feel like a broken record here- I want to help but I feel ignored- Savella is the cure- no more pain, no nothing- a little fatigue and stiffness- that is all.
Please someone write me back- tell me you have tried it- it is approved by the FDA for Fibro - and no, I'm not a plant or a blogger but a real women who wanted to die and could not get out of bed for 3 years.
it is mostly endorphins- 75%- and some SSRI- 25% probably less toxic then whatever garbage you all are on now- if you doc will not give it to you find a new doctor- go to the web site and ask for a referral to a physician in your area. It changed my life in 2 weeks- no more shoulder and arm pain, no nothing- just mild fatigue and a little stiffness at night-----write to me if you have any questions. I am happy to help, SusyB
Well, you are not alone, my friend. I feel for you and understand a tiny bit. Fortunately for me my fibro didn't hit to the point of being disabled until I was nearly 50 years old. I don't know how you do this with a young child. I won't pretend to have the answers just sending you love and a bit of sympathy today. I have two daughters who have children and I see how busy they are all the time and can't believe I ever did that. I pray every day that they don't get this painful disease.
Having said that and being all depressing, we do go through ups and downs with this fibro and cfs. Because you are having an immense amount of pain the last few days doesn't mean you will also have it next week. We try to eliminate as many agitators from our lives as possible (stressful situations and people). That seems to help me.
I know that my 5 busy little grandsons will stop and play if I sit down and get out some legos or a jigsaw puzzle. They love it when I drag out the craft box. I plunk it down on the dining room table and they have fun for hours. There is nothing fancy in there. If they are really lucky I may get a tube of glitter and that is a real special day. (It does end up all over the house though.) I know some kids don't appreciate doing things with their hands. Running outside always helps.
I hope and I'll pray that your doctor appt goes well and you get some good answers. You feel better now.
It's good to vent. That is what we are all here for!
I officially became a burden to my family earlier this year - can't remember the date, my flare has lasted about a year. But getting to a doctor has been a problem - hopefully that will change sometime soon. But I hear ya!! My husband is provider, caregiver, house cleaner, and so on. I HATE it! This was so NOT in my plans for my life. But I am blessed to have a husband that is very supportive. The stress of everything that's going on right now gets to him and with two young kids (7 & 2) it's really hard. He sticks with me though and has learned to adjust. We've had to change things and our 7 year-old pitches in a LOT (some days it just kills me - I want her to be a kid, not a housemaid, but she's eager to help). I pray things get better for you!! And that whatever God's plans be, that you'll adjust well and quickly too it! *Hugs*
Welcome, i am also in mid-freaking flare but lately I will have one or two semi good days to the rest of the week is crap. Going Monday to the dr to say we need to re-evaluate. Always important to remember just because it worked before and is not now that we cAn go back and say that. Hope they find you the right combo and try not to get discouraged. I don’t offer too much advice as I do not have near the knowledge as the others. But I read a lot and pray for each of us. And it helps to not feel alone as we do even with some of us having a houseful. I am sure my family grows tired of listening to me. Good luck , Scarlett
I feel the same way. It's just my husband and I now, with our 33 year old son (who helps a lot). I have days where I feel like such a burden. But, we can't do that to ourselves. My husband comes home from work tired. He's been a carpenter forever. After 36 years of marriage I thought we would be living a much different life. But not so. My parents lived to 92 and 87 years old. I should have a good 30 years left. Why am I so dependent now?
We can't let guilt poison us. This is who we are and we need to learn to love our abilities. I can hug, I can encourage, I can love. Some days I can cook a good meal. For some reason this is our life right now.
Try to find the awesome thing that you did today. Just one thing and wrap yourself in it. Let it be enough. Tomorrow there will be another awesome thing. You will find it.
it can be a completely miserable life sometimes. And yes water from the shower hurts and I’m on lots of meds for fibro and nerve pain. Until my RA got so bad this year that I can’t sit indian style and I can’t lean over any more I always sat in the bath with the water running and leaned my head over under the faucet to wash my hair. I’ve down that for years even before I had fibro issues. I wish I still could.