My brain knows I am going to feel awful #8-9 pain in the morning, but if I can get breakfast, my med, and get dressed, as the day wears on, i feel better #6. By 7 in the evening I feel pretty good #3. But then it starts all over again. Often at bedtime, I just break down and cry, thinking of another day of this pain preventing me from doing things I want to do. Then splashing cold water on my face and stepping outside for fresh air, I go ahead and lay down. My oldest daughter died at 33 of connective tissue disease, so sometimes I feel guilty because I know that she hurt worse than I do. I’ve had this fibro 45 years. This has been more noticeable since I am retired and not forced to go to a job every day. This is the first time i have told anyone about crying except my doctor. he tried 3 different depression meds on me but they all caused hallucinations, so he recommended easy-going music before bed, which I do.
Hello, I have Fibro 20 yrs. Never met someone with it that long. When pain raises in me I notice my emotions get worse. Or a storm approaching. I take Wellbutrin for depression. I am a survivor of childhood abuse outside my home. So PTSD is one of my diagnosised illnesses. I read a lot of books when I was in bed the first three months of Fibro undiagnosed. I read traumas can kick start FM. Read stories women shared. One was a bad car accident. There are all kinds of tramuas. We are definitely made individually. Pre-excisting illnesses also add in too. For me…a bad first marriage of alcoholism, my family home too, anxiety attacks canceled my soon passing LPM education. Cancer twice, a bad car accident where I blacked out…then learned to walk a straight path for imbalance issue etc. Taking inventory of our lives helps to know where our body suffered help. I pray God will bless you to less depression & pain.
Hello Carolyn, yes I find myself having a good cry sometimes out of sheer frustration when I am in pain which is constant and what my life has become I have landed in a wheelchair because of chronic back problems I was always an active person and a nurse in my earlier days sorry to hear about your daughter but do not feel guilty about your emotions does us all good to let them out I try to keep myself busy on here and recently became one of the moderators for the site remember we are always here for you to talk to. Take care Annette,
Hi Mitzi, What a lot you have been through in your life but the thing is you came through it I know it is difficult but positive thinking can do a lot for us thats why I say go with the flow and let your emotions out when you have to hope good days are coming your way.
Annette - thank you for your thoughts. I fear a wheelchair because I have so much to do yet. BUT, i think this site is a life-saver. Mr doctor or my relatives do not understand at all… hey say I want sympathy because blood tests are negatve. I also have spinal stenosis and osteroporosis… am trying my best to keep going so i am not in a wheelchair. BUT if i am, i want doc to find me the very best and easiest. sorry to hear you landed there. I am a very stubborn single parent, and remain so even at 76. I look to God as often as I remember to, other times I whine to my cat. God bless you for writiing me. carolyn
Hi, Carolyn, I hope you can keep going as long as you can without having to go into a wheelchair I have back problems but I have two spinal fractures that nothing can be done for and can barely walk I have recently bought a motorized wheelchair but have not been out in it yet because of lockdown,I am widowed and on my own at home with my special needs adopted son I can give you five years on age I am 81 and like you a bit stubborn too do not like anyone telling me how to run my or my sons life what kind of cat do you have I have a big Persian boy called Alfie. Take Care Annette.
annette - i always have a rescue dog or cat. right now i cant walk a dog, so in march I got a timid little female cat from the no kill shelter. they named her Mia, so i left it. she would sit in the litter pan for 20 minutes, but nothing happening. My vet is a 75 mile round trip but i dont trust anyone else. he does a lot of blood tests, 60-65 and they are done right away…not like MY doc who takes a week to call. Vet said some wrong with bladder, leave her overnight. next day he showed me a vial of bright red blood and a vial of yellow pee. it had all been in her bladder… they separated the blood. he said she could not pee due to bladder stones. he lazered her tummy and I took her back 4 days later for more lazer. Since then she eats well and pees all the time. she likes to sleep at the foot of my bed. she’s a regular tabby cat. i went to get an orange cat, but have a tabby instead !
It is wonderful that you went to such lengths to heal your precious Mia.
Also, experiencing the level pain that you do on a daily basis would certainly make anyone have crying spells and experience depression. I know that chronic pain has affected me mentally/emotionally, as well. Hang in there!
Mitzi - thank you for sharing. You have had a lot of trauma - i think many people end of with fibro due to other traumas. when there was a red measle outbreak. I got the shot against the measles. after the shot, i was in bed 2 or 3 days, unable to move. I know it caused the fibro because the pain never went away. Because of that i have never had a flu shot. I appreciate you sharing - I know that distractions also help. I went to my daughters last night, over a one hour drive each way. and while I was there, I had a pain level of 2 or 3. Both grandsons were home and we had a lot of fun - they are moving into apts. for school in a week. I did not hurt until I got home and then pain set in again. And i ended up crying again during the night when pain woke me up.
The worst time for me is first thing in the morning. As the day goes on I start to feel better but it doesn’t last as long as I would like. By evening when it’s bedtime is actually when I feel the best. So confusing!!
I believe I have a milder FM but lots of OA thru the body…I have worked out a pain med therapy every 6 hrs and just took my 1 ibuprofen, 1 willow bark and 1 Pain RX (otc), then at 12:30PM or so 1 ibuprofen, 1 tylenol extra strength, 1 pain RX, and it continues alternatively in 6 hrs. Then again at 6:30AM and it continues thru the day…
I get close to crying but somehow I don’t. Maybe if I could it would release a lot of pain.
I just started back on DRibose again after being off it for some time…we shall see.
I will NOT take any pharma pain meds, they are so so damaging overall, I’m talking those stronger than the ones I take.
So sorry for the loss of your daughter, but don’t put a guilt trip on you.
And on the sleep, I get 8-10 good deep REM hours nightly and I think I have my sleep combo posted around here somewhere, I hope so anyway.
right now a lot of pain is from spinal stenosis. i can sit and drive or walk, but i cannot roll over or move in bed. doc said thats because vertabrae are in different position when the body is laying down. they call it “positional dysfunction”. i may never get a good REM sleep again.
Hi Carolyn! I don’t cry every day only because I don’t want my husband to think I’m “feeling sorry for myself,” but when I’m alone I cry. In addition to the normal Fibro pain in my whole body, for the past year I’ve had increasingly painful lower back pain. At first my doctor thought it was piriformis syndrome. I had PT for 3 months and my back is much worse now. I can’t bend over to put my pants on or tie my shoes, cannot load the dishwasher or do most household chores without level 9 pain. It’s either my SI joint or some other type of spinal issue. I can walk, sit, stand and drive with minimal pain. I’m going to have a Lumbar epidural steroid injection in 4 weeks and hope that will help. I’ve had fibro at least 20 years. Many really bad flareups have come and gone, but I don’t think this current lower back issue is going away. I’m 71 and have many fears about this thing getting worse. I use media (computer and TV) to escape from my life of pain. I take long walks when I feel up to it.
Hi, Justmaryw. Welcome to the community!
I also have back pain that can become severe b/c of sciatica. I have had epidural injections for years, and they really help. My doctor is amazing - He doesn’t use a lot of steroids on me, since I told him they cause hives. Much of what he does are nerve blocks. I’ve had injections in my back, wrist, hands, knee, neck (before my surgeries), and even once in the back of my head when I had a terrible migraine. That injection immediately reduced my pain by at least 70%. I’ve been going to him for 12 years now.
I really hope that you can find some relief!
AussieMom!! Thanks so much for the swift response!! You have just really encouraged me so much to know these treatments worked for you. I am now so hopeful that the epidural might help me and I’m excited to go! The doctor doing the procedure is an Anesthesiologist. What type of doctor does your injections? I’ve been so confused about choosing the right doctors. It seems like some “Pain Clinics” just want to give you drugs or want to jump to an operation. I had never heard of a pain clinic run by anesthesiologists, but my GP set this up for me.
My doc is also an anesthesiologist. He knows just where to put the injection, to block the pain. I’ve gone to him for over 12 years.
Depending on what kind of injection you’re getting, your doctor may need to do a series of injections. I did have one several months ago, in my lower back, that didn’t lesson my pain at all, which was rather odd. But, the following injection, did the trick.
He is also my pain management doctor, and I am on a low dose combination of prescription meds, as well. On a good day, my fibro pain will rate a 2 or 3, on a scale of 1 to 10. It will never go below a 2, and I’ve learned to deal with that. I haven’t had many good days over the last couple of months, but my body seems to be between flares right now, which is good.
I’m glad my comments have helped - You might want to make a list of questions for your doctor, at your initial appointment. This could help put your mind at ease.
I think crying is actually very healthy for us to do and it relieves a lot of stress and CAN help reduce pain.
Hi, Carolyne, I’m sorry that the pain is more than you can bear now. As others have said, don’t feel guilty about being in pain or talking about it. Your daughter’s experience does not negate yours. Getting old with fibro is tough. I’m 60 and have had it for 31 years. Like you, I worry that one day, I will be in a wheel chair. It is a legitimate concern for us. When those fears grip me, I shift my focus to something positive. Also Crying is not a bad thing. It gets the feelings out which we all need.
I’ve started to look into getting a service dog. I don’t know if one could help you. They are available for people with fibro. Some of the benefits of them is that they can get things for you and pick things up when you drop them. They also help with mobility. They are actually better than using a cane to help you walk because they are attuned to your balance or lack of balance and gently lean into you when you need support. The con side is that you have to be able to take care of a dog or be living with someone who is willing and able to care for it. You obviously also have to like them. Another thing I decided to try once the pandemic is over is signing up for visits at my home with a therapy dog. There are also therapy cats but I’m allergic to the fluffy felines. I decided to do this to help me keep my spirits up because mine go down from time to time too.
The one thing I do when I feel like I can’t take the pain, exhaustion and limitations any more is meditate. I do Centering Prayer but any form works. I often do it laying down in bed because of the pain. It is the one thing I know that will stop the pain when medication fails to go so. It is only gone while I meditate but I get a break from it. You need to be in a deep meditation for this to happen and it takes practice to get there. I’m no Guru & started off by meditating for 5min a day and slowly added minutes. I don’t know if any of this will help you. I hope you are doing better.
Hi Carolyn, fibro sucks!!! Sorry. But it’s true. But Carolyn, it’s ok to cry. You have every right to cry. I’ve been crying recently because the reality of never working as a nurse hit me like a ton of bricks. I’ve only had fibro for 2 years. I’m grieving the loss of my " old self" and trying to find my " new self". You have a lot to grieve about and I’m sorry to hear about your daughter. That must have been so hard. Please don’t feel guilty. Everyone has their own pain. One is not worse than another. I see a therapist every week and it has been incredibly helpful to me. She has helped me learn to be kind to myself and to learn some new coping skills. Also, I have learned a lot about fibromyalgia by going on Pintrest. People share ideas about things that help them when they have a flare etc. Big hugs!