I’m currently sitting in my car crying. Borrowed $25 to see my doc today to have paperwork filled out for my disability hearing that is coming up. I haven’t slept more than 2 hours a night in months. I am currently not on any common meds because the side effects were worse than the fibromyalgia. (Cymbalta, lyrica) I was basically sobbing in her office begging for something for sleep. My rheumatologist has me on trazadone but it has not worked so far and he wants me on it till I see him again in October. My pcp is acting clueless. I’m telling her I’m not sleeping which is causing my mental state to suffer. I’m not who I was before all this. She simply gives me the shoulder shrug with this stupid smirk… and says I don’t know what else to tell you. There is no magic pill for sleep, then proceeds to offer me more lyrica. I’m at my wits end. I don’t know what else to do but sit here in my car and cry. I’m losing hope quickly. No one understands and no one is helping. I can’t work had to borrow money just to pay the copay to come to her for her to shove more lyrica at me and tell me I have to wait for her to fill out the paperwork. And even then she says I can only fill it out to the best of my ability which doesn’t give me much hope at all. I’m tired I’m so done with all of this crap I just want to drive off a bridge at this point. How can’t see how these doctors could be so stupid and unsympathetic. I can’t even explain the rage I feel right now
Wow that is unacceptable for the physician and I sympathize. I have had bad experiences like that, except with pain medication instead.
For sleep, I have found two supplements to be very effective, as well as antidepressants in general but you would need a prescription. The first supplement I use is 2.5mg melatonin every night, no more than 5mg. The other is magnesium glycinate, 400mg, and I swear by this supplement, it helps me fall asleep and if I have to get up for some reason I fall right back asleep.
Have you thought about trying these? They really changed my sleep completely.
Hi QDC23! My heart goes out to you. I am sooooo sorry for people not listening to you and basically blowing you off. This makes me very angry too! Please, please start by getting a new PCP. You deserve to be treated with dignity and respect. There are many medications out there to help with sleep. Trazadone is one of them that may need an increase in dosage. There is Ambien, Lunesta and other medications for sleep. I know this because I’m a nurse and I use to have trouble sleeping. Waiting until October to get help for sleep issues is too long! You might also consider getting a psychiatrist. I have one because I also suffer from depression, anxiety and PTSD. You might not have any of these diagnoses. But I would be surprised if you don’t have some depression. My psychiatrist has been a lifesaver to me. They know so much about all types of medication including sleep medication. Even if you are medication sensitive, there is one out there just for you to help you sleep. I could hardly function when I couldn’t sleep. You might also want to see a therapist. Having to deal with fibromyalgia can be an awesome task. And having that one person you can talk to every week or every other week about ANYTHING,and they will keep it confidential, is a true blessing. They don’t judge you. They only want to help you. I wouldn’t be here today if it wasn’t for my therapist. But know, just like shopping for clothes, you need to find the right PHP, rheumatologist, neurologist, if you have one, and therapist that fits your needs. Don’t settle for just anyone. Try to hang in there. You are important! I hope my ideas have helped you a little. You are not alone!
I am so sorry, honey. My heart breaks for you and I know exactly what you are going through. Not sleeping mixed with the other exhausting symptoms of fibromyalgia does indeed alter our mental state. I had a similar experience that was the final straw with my old rheumatologist. I was sobbing in his office because nothing was working and I needed help. It is extremely rare for me to cry like that. I remember he just stared at me blankly and said, “well we are running out of options.” and proceeded to tell me I should take medications I was prescribed for longer when I had already been on them for half a year and no change. People, even doctors/specialists do not always realize how deeply their actions and words cut to the patient who is suffering.
Please hang in there. I am glad that you have a disability hearing coming up, and remember that this is your life and it is not your fault that you have this horrible auto immune disease. Praying the very best for you no matter what!
God bless you! I too consider myself to be extremely strong. I haven’t cried like that in a lonnng time, But that day I was ready to show my strength physically and I know that’s a BIG no no! But that just lets you know where my mental state is right now. I went to church today and I feel much better. Just praying for a breakthrough and I know God is MIGHTY and able! Thank you for your prayers!
Dionna N. Cummings
It can be so frustrating, even with a good dr.
Its very trial and error what helps each of us…
I wanted a muscle relaxer that would help me at night on ocassion, i can get in a flare and my muscles get so tight i cannot relax…So far i cannot take any level of it…so my dr says, well just call back in if one doesn’t work and we will find one that does…but i feel awful on them so its hard to call , thinking please give me something that makes me feel awful…i knkw others who really do well with muscle relaxers…its just not an answer for me
So sorry to hear what you are going through. In 2013, 3 years after seeking help for pain and chronic fatigue, I was FINALLY diagnosed with FM. It took so much time to get me to where I am now. It took my Family Physician and the Rheumatologist working together to help me. I feel if your doctors are not working together, you will not make headway. When you have a doctor that does not think FM is a true disease, you will NOT be able to get better because the doctor will not be looking for new ways to make you feel better. Having said that, by 2015 I was walking with two canes and now I am able to walk almost normal. That does not mean I am not in pain, it means I am able to have a good day instead of sitting around and hurting and watching the world go by. When they finally finished working with each other … I am on Cymbalta and Paxil, Meloxicam for pain, and Ambien for sleep. They change the dosage from time to time to make sure the blood counts are proper. I am so pleased with my treatment. Search for good doctors.
Dionna, how are you doing now? Check in when you get a chance, OK?
Seenie from Moderator Support
@QueenDeeCoping23: If you are feeling suicidal, it is the Lyrica. Some people can’t take it. I am one of those people. I had the same feelings you do, so I looked up the side effects and suicidal thoughts are listed for Lyrica. Also, your hearing for Disability, if you have not filled out the paperwork and neither has your PCP, depending on where you live, will take a fairly long time to wait. I live in NW Alabama and it took me two years to get my Disability started. I know I may depress you with what I have said here, but I speak the truth and nothing but the truth. I just want you to be informed. Try to stay as calm as you can. It will help with some of your pain. I am here for you if you need to talk.
I’m so sorry you were being treated like this and I hope by now you’ve found a doctor who actually cares and wants to help you. There are too many doctors who don’t bother to research fibromyalgia or who still believe fibromyalgia isn’t real. It’s ridiiculous that we have to push through the pain and exhaustion we deal with every day to look for some relief.
I think it is normal to be upset with a doctor when you are in so much pain. Right after my Rheumatologist diagnosed me with Fibro, I wanted him to listen to me and I kind of had a blow-up. I said, “You come whisking into the room and ask a few questions and then you are gone! I bet you like being paid a lot of money for a few minutes of time you spend with your patients.” He then looked at his watch and said, “I have been in here for 15 minutes.” I said, “That is not true!” So he turned around and left me in the room. I got a letter from his office a few days later advising me he no longer was my doctor. In my area, Rheumatologists are few and far between so maybe I should have bit my tongue, but I was hurting so bad and he just didn’t want to hear what I had to say.
Okay, I write this knowing that I tend towards confrontation…
I don’t put up with any brush-off or not listening from any doctor for any reason. Remember, you HIRED the doctor to help YOU. Not the other way around. There is no reason to pay a person who clearly isn’t helping you.
I have neurologically complicated chronic migraines and on more than one occasion I have had an office visit with a neuro go like you describe, Terearnah. So I went to the front desk, demanded my copay back and a copy of my chart. If I were you I would go to office to collect your chart and to get the cost of your last visit refunded, if they give any grief about refunding the last visit tell them you are NOT paying for a doctor to decide to refuse to treat you, thanks. Stand right there in front of the desk blocking the sign in area until they deal with you. What do you care what they think? They’ve already blown you off. Take in a copy of the letter the office sent you. Make a scene. Don’t go down without a fight. They’ve already written you off, make them give your money and your chart! And then write a formal complaint to your local AMA (I assume you’re in America?).
I haven’t had the chance to read everyone’s replies on this post yet but I have been there and just want you to know that doctors do not know what they are doing because I’m sure you know you cant understand FM unless you have it. I am off almost all my meds! The doctors where I am now have no comprehension on FM. You are not alone! I too only sleep 2 hours and it can really make anyone batty! If I dont SHUT my brain down I dont get any sleep! Unfortunately I still take xanax for knockout factor but I suggest you research cannabinoids, and what they do! YouTube it, Google it! Prayers
ModSupport person, let me say you are great for this role, and I love your empowering, encouraging words!
I am sooo sorry for your pain, both mental and physical.
A doctor like that has no business treating anybody but unfortunately many are in
it for the money. ive been battling this for over 30yrs and have walked out of more than one office for disrespectful treatment. Report the doctor and find a new one.
I know when money is tight everything is much more difficult. I hope you get the
disability, if they deny it appeal it.
There isn’t much I can take, I react badly to most of the meds used. I do take
ibuprofen, but have to be sure and take an antacid with it.
My rheumatologist gives me an IM injection of Toradol every so many months and it helps but if you have kidney issues you cant take it.
I do take trazodone for sleep, took the psychiatrist a while to find the right dose though.
I use the heating pad a lot, just move it from spot to spot.
I go for counseling off and on, to help me thru the rough times, that also helps.
Just talking to someone who doesn’t judge you can help.
If there are any groups around that would be good.
I envy the people that can take the meds and feel better although Im also happy
for them. But many of us cant tolerate the usual meds and have to try other things.
Hang in there.