Hi everyone! Here I am again lying on my couch in a lot of pain. What is going on? It seems like I’m having increased pain starting about 8:00 at night. It takes me on average three hours to fall asleep even if I’ve taken my night meds an hour before going to sleep. I hurt all over. My arms, legs and feet do not want to touch the mattress. Does that make sense even if there is such a thing. If I move, my pain increases. If I use my arm to move the covers, my arm really hurts. If I turn in bed, man does that hurt. My right arm, wrist and hand are really hurting just typing on my iPad. Why do I hurt more at night? I just want to be knocked out until the morning! I hate tossing and turning trying to find a comfortable position. I don’t think the meds are working! I take cymbalta, Gabapentin 600mg three times a day, a. Now my iPad won’t let me see what I just wrote. Sorry if the sentences are all mixed up. I take Gabapentin 600mg three times a day,amitriptyline 23 to 50 mg at night. I am also so tired in the day. My psychiatrist prescribed Ritalin 20mg twice a day to help keep me more focused and awake. That really doesn’t help. Everyone, I’m so sorry for venting like this to you. I wish everyone peace in your hearts. I hope you can read this. Even I can’t see what I’ve written. ? I thought about buying a feather mattress pad. I have no idea
Owweee…doesn’t sound good at all, Freedom. Are you still seeing your rheumatologist about fibro?
Yes , always higher pain in the evening…
I think of it as my muscles paying me back for everything i made them do , during the day😳
I am having physical therapy now and it exhausts me , but i know i need it…i got very weakened with late flu…
Also the weather is so wet this year, and barometric changes make things worse with fibro.
Hope tomorrow is better😊
Hi. I bought a feather mattress pad and it didn’t help at all. I agree with Lmd, when I’m in higher pain in the evening, I figure it’s my body reacting to the days’ activities. I can’t find a comfortable position most nights, either because my hips hurt so badly (no sleeping on my side) or my hands hurt so badly. One night, my feet hurt so badly I couldn’t have sheets or blankets touch them. It got so bad, I went to the ER where they diagnosed gout and spent a lot of time explaining to me the sins of drinking. (I don’t drink - and can’t on most of my medications). sigh
I know it sounds counter-intuitive, but have you or anybody else tried weighted blankets? They are supposed to help when you are in pain. I haven’t bought one yet because I’m always so hot and sweaty (plus they are expensive), but people I know with fibro swear by them.
FYI, I have yet to find a drug that can knock me out at night. Most nights, I’d give anything to be unconscious and escape the pain. It’s 5 am on a Saturday morning and I’ve been awake an hour after sleeping only 3 hours. My doctor has bumped me up to Zopiclone, which is addictive so he only wants me to take it for a short period of time in an attempt to normalize my sleep patters – but it does very little for me.
I am just the opposite - extreme pain during the night and in the morning. i begin to feel good about 5 pm and until bed at 10 pm. I usually go right to sleep, but wake up every 45 minutes to one hour all night. i have tried amytriptline, Xanax and melatonin but they are no help at all. I sleep pretty good from 5 am. to 9 a.m. and then the pain is awful. I use a massager and sit on ice packs for an hour before I can actually move. I do have herniated discs, but no doc seems to be any help. I take Norco and Naproxen for pain and Xanax for anxiety. The ONLY help i ever had was cortisone shots every 90 days, but that gave me osteoporosis. Doc said it would, but it also gave me 10 years of living.
I have never considered suicide but when I read of it in the paper I feel like I can’t blame the person for that extreme if he/she hurts as bad as I do. Am open to suggestions. have had this fibro for 40 years. I am 75.
Hi Carolyn, I am soooo sorry for the pain you have experienced both physically and mentally. My heart goes out to you. It seems like you haven’t found the right doctors to help you with fibromyalgia and pain. Are you seeing a rheumatologist or pain doctor? There are many different medications to help you with sleep. I have a rheumatologist and a psychiatrist. My psychiatrist really has worked with me to get me on the right medications for sleep and anxiety and depression. My rheumatologist mainly helps me with symptoms and Fibro pain. By the way, she is the third Rheumatologist I’ve seen in 10 months. Unfortunately, you have to be your own advocate. I have had suicidal thoughts in my life. I don’t anymore because I started to increase my support system. I have met a lot of wonderful, understanding people at my church. I’m not always able to go to church due to Fibro, but I try as hard as I can to get there. You have all of us who care about you! I do hope you reach out to people or doctors or new doctors. You deserve peace and kindness.
I have increased pain as the day goes on, as well. It makes intuitive sense as we also become more tired as the day’s activities can be wearing.
I, too, wonder if you have found a rheumatologist who deals with Fibro patients? Also, have you tried medical marijuana? It didn’t help me, but can be very soothing at night for many patients according to my doc.
I highly recommend that you search for a new doc who is willing to work with you on various modalities and not just throw medications your way.
Best to you and all who suffer with daily pain.
Hi Mimi3! I have not tried medical marijuana yet. But I believe my state is going to legalize marijuana very soon. I also think I need to find a new Rheumatologist. I just saw mine yesterday and she didn’t really seem very invested in me. I’m sure it’s because she is the third Rheumatologist I’ve seen in this clinic. Oh, in less than a year. I’m not usually a person who hops Fromm one doctor to the next. Very poor care.
When I first started having problems that were eventually diagnosed as FM, I felt as if my nervous system had gone haywire. Once again, 30+ years later, I am in a similar spot. I was so, so unable to handle anything touching me. It was very hard to explain to my husband that I loved him, but please don’t touch me. I am currently sleeping on my couch. It is so much better than the mattress. The blankets no longer bother me, but 30 years ago, they did, So many things hurt: I just could not believe it. Poor or little sleep exaberates all of the symptoms. Sleep medicines, for me, have been a bad trip.
I am better than 30+ years ago, so there is hope. I am on the verge of investigating CBD and THC. I am typing this now because my pain is preety bad. I will do my best to share with you and everyone anything that I find will help.
You have me beat. I thought 30 years with this problem was enough! I will be 67, very soon. The broken sleep is part of the syndrome. Our bodies need deep, restorative sleep to repair our muscle during the Krebs cycle. I had around 12 cortisone shouts last year for bad discs in my back and various spots with arthritis. A few of them helped, but the weight gain is awful. I hope your day, today goes better.
Replying to Freedom’s question “Are you seeing a rheumatologist or pain doctor?”
Yes. both. But the Rheumy insists I take Plaquenil. I refuse. Its a very old Malaria med. She said yes, the but the side effects might take your mind off your pain. I did not take her RX and have not been back for one year. She did a bone scan in 2017 and I have severe osteoporosis from years of cortisone from my GP. He told me i would get osteo but I had 10 good pain free years of life. Rheumy made it clear I cannot get a bone scan anywhere else, because it cannot be compared unless from the same machine. GP sent me to you new young pain doc. I was on 8 Norco a day, and he took me totally off. I have a thread on LDN somewhere on here. Then he started me on Gabapentin. I told him ortho had me on 600 mg a day and i was nauseated, throwing up, etc. but he insisted it was the best thing for me. I took the Gaba for two weeks and was so sick I called pain doc. He stopped it and wants me to consider a spinal stimulator. My only meds now are 2 naproxen a day (high dose of Aleve) and a Xanax at bedtime. I have a TENS unit and tomorrow going to start using it all day, every day, as that is basically what spinal stimulator is, but implanted. I checked and Blue Cross will pay $52,000 toward it or my Medicare will pay $37,000 toward it. I do not have money to pay the remainder of either of those, Also, there are many people who do well with the implant, but also some company recalls and serious burns and higher pain for others. I cannot take that risk. Am considering the old native american remedy for pain, Wild Lettuce. I need to find a health food store and get some pills or leaves for tea. There is a short write up about Wild Lettuce on WebMD.
My pain starts at bedtime, gets really bad throughout the night, and is often gone, or nearly gone, by morning. Last night, I started feeling the pain twinges in my left hand, then right hand, then both feet. Then it was game on - pain! Heat often helps me so I have two giant heating pads and I wrap my hands and feet in them. I took xtra strength Tylenol, which does just about nothing. By morning, most of the pain was gone except what I call “remnants” in my left hand.
It sure seems like we have tried a variety of remedies, but each person is so different there’s nothing that helps everyone. I think of all of you when I feel like crying with the pain… i remind myself that in every state and most of our cities someone feels just as bad and helpless as I do… or they are just beginning to feel better for that particular day. it does help to have everyone’s ideas to read and research…and interesting how different doctors approach the pain.
It is hard when the ones you love cannot even give you a hug, or a pat on the back. In general, a person can tolerate or inflict more pain to themselves then others can. Like when you have a splinter you are trying to get out of your skin; but if someone else tries to do that it hurts more. What sucks about fibro is that you can’t stand to even touch yourself. Even when I pace myself throughout the day, by days end, I’m crying. One thing may help, it may not take it all away, but helps me a little bit is using Theraworx; it’s a magnesium base foam you rub on the area that hurts.
Sleep, what is that? This is the only drug that the doctor prescribed me that help me with that (somewhat) and its Alprazolam (Xanax). All the other meds they tried me on either made matters worse, darn near killed me, or nothing at all, but the Xanax gave me a couple more hours I never got before, and my pain was lessened. I went from 4 hours interrupted sleep to 5 or 6 hours sound hours. Heck, when I first started sleeping that long; I was a little disorientated upon waking, thinking that I slept the day away. However, the doctor took me off them and refuse to give me any more. Now I’m back to sleepless nights and crying in pain. Reason, its addicting and will shorten your life span (chance of stroke.) My doctor said a study was done and found that the average person lived 10 years less than those who didn’t take it. Who cares; because having 10 more years of no life, no fun, constant pain and sleepless nights is so much better than being able to smile, enjoying your life, being able to work, and sleep, right? And they wonder why we’re depress. Well good luck and I hope I wasn’t too much of a downer, but the magnesium is worth a try.
i have taken Xanax 3 times a day for over 20 years. sometimes an extra at bedtime. i have had no side effects. I can go 2 to 3 days without any when I am traveling or doing something really distracting. I will have to check about strokes, because that scares me. mom died of a stroke. Funny that my GP and my Rheumatologist never mentioned side effects or addiction to me. hmmmm.
When I heard about what the benzos can do to our brains, I got off the low dose of lorazepam I took some yrs ago. Gotta protect our memories.
On the pain, I am in a lot more pain as it gets later in the day. I deal with advanced OA as well as “some” Fibro.
I was given a weighted blanket as a gift. It’s 6 lbs which I think is plenty heavy. It does feel good. I wake up to roll over at night because both my hips ache. The extra weight doesn’t help with that but it’s soothing and can be warm. I’d certainly try it. Best of luck.
CBD has done wonders for my migraines. I’d say it reduced them by about 80%. I still get headaches but they are mild. I asked my doctor about THC and she said there was a study that shows a negative impact will occur in as little 3 years of using it regularly. The study included military veterans who used it as an escape only to end up worse off with anxiety and depression. I already have anxiety and depression. Don’t we t those to get worse. Let me if the CBD helps