New to the forum, but old to Fibro

Status
Not open for further replies.

Scully55

New member
Joined
Aug 25, 2023
Messages
1
Hi all! I have been diagnosed with fibromyalgia for well over 20 years. To say I have good days and bad days is an understatement. I am 68, a woman, and am very new to online forums. Lately I have struggled just to find a good doctor that listens and tries to understand my biggest challenge that comes with Fibro…insomnia. Now I have always loved to sleep! But getting the restful, deep, healing sleep has eluded me for years and it’s getting worse. I can’t fall asleep without taking something, can’t stay asleep and when I finally do, when I wake up, I feel more exhausted than before I fell asleep. I’m tired ALL THE TIME! So I did research and found a great book written by a doctor that actually has Fibro. It’s called The FibroManual. Now the first thing she says to do is work on the insomnia issue. And find a good doctor who will work with you. Easy right? Wrong! My medical group will not refer me to a rheumatologist. They said Fibro isn’t an inflammatory disease so they won’t ref me. My internist today said in a nutshell, you will always have this disease and you just need to deal with it. So I am here to ask you all if this is what you have experienced? Are rheumatologists seeing you all for Fibro? I feel so defeated. I just want to find a doctor who cares enough to work with me to find the right treatment for me. So that I can wake up and have enough energy to play with my grandson. Thank you for any advice you care to share. BTW, I am currently taking Amitryptoline (sp?) at bedtime and zzzzQuil gummies (non-drug). The internist prescribed the Amitryptoline and doesn’t seem to care that it’s not really working.
 
Hi Scully, and welcome to the forum.

Some rheumatologists see patients with fibro and some do not. Some doctors automatically refer patients to rheumatology. Others are like yours. People on this forum have experienced pretty much everything that doctors can throw at a patient, and many of us have been frustrated in the process.

If the amitriptyline is not helping you don't take it.
You might try Trazadone, because it is known for helping people with insomnia far more than the ami.
If medical cannabis is available where you live, that may help with sleeping as well. And maybe you can research this and find other things to try in terms of your sleep habits, unless you have already tried all of them.

About treatment for fibro -- there really isn't any, but you can find out for yourself what kinds of things help you if you are willing to put in the time and energy and be persistent with it. this will benefit and empower you more that any doctor can. Doctors are good for some things, like prescribing medication that helps us to sleep or eases pain a bit, but they can't really help us to learn how to manage this. You need to discover that for yourself. I wrote a post about this, maybe it will be helpful for you.

 
Hi Scully, and welcome from me too! The author of the Fibro Manual, Ginevra Liptan, is a functional doctor. When she says find a good doctor she means a functional doctor, not a rheumatologist. There are a few rheums who can help with fibro. But insomnia is definitely not their field. I do agree with her and many other functional docs that sleep is a great place to "start". But to get sleep better we'll have to work on the other symptoms like local pains at the same time, so you work yourself upward swinging from side to side (there's a kids' game that reminds me of with wooden figures between two cords).
Instead I'd recommend becoming acquainted with the recommendations for sleep of people like neuroscientist Andrew Huberman and Hugh Selsick.

Rheumatologists have been stuck with fibro because there are quite a few diseases that they can exclude that belong in their speciality. Fibro doesn't belong in anyone's speciality, so is simply dependent on doctors showing interest. My first rheumatologist didn't want to diagnose me because I don't look like fibro (I think he meant male and slim). My second did diagnose me, but was otherwise absolutely no help and had no understanding. She did me the favour of sending me to a rheum/fibro clinic, where I got to know 4 further rheums who knew I already knew which way to go, and could give no further help than that.

So like sunkacola says it's up to us to tackle our symptoms by ourselves with web/forum recommendations like here. Best if we can't alone would be some sort of mentoring scheme, and there are quite a few out there, but I've tested 2 or 3 and their competence is fairly limited, not up to a form of fibro as severe as mine or "patient activity" as high as mine, at least.

I'd also recommend you to stop amitriptyline. It didn't help me either, zombified me day and night, so my sleep wasn't restorative and I never really woke up. The 8th side effect was the last straw after 4 months.

You could stick around here and learn a lot what you can do. If you don't think that'll help, and you do need something else similar to Lipton, I'd be interested to know why, and encourage you to read/watch/listen more from functional docs, look out for them, praps at least try a mentoring scheme. And good understanding gentle manual therapists may help you more than most doctors, but again they won't know their way around insomnia.

If you want to get any other reason for insomnia excluded, I'd recommend a sleep lab, lung or psychiatric or both, for me the latter brought me a fairly understanding psychiatrist who thought outside the box, mentored me a bit in a sense, but that was luck, and he's gone. Aside from that for insomnia it was important to me to identify and minimize 30 triggers of it, to find supps that work - it wasn't the normal ones for sleep, and the last bit was using the recommendations of modern sleep experts, like Huberman & Selsick, for using early sunlight and changing sleep behaviour.

If you want to become more specific, this is a good place to do so.
For starters I suggest that if you are taking something for a sleep but it's not getting your sleep restorative, it'd be better to start on the alternatives instead. First inklings of what the sleep experts say: If you can't sleep, don't take anything, get up out of the bedroom not just the bed, and do something nice and calming all night until you can, until you are naturally tired. If you then still can't sleep after 10 minutes, start over until you can. (There's several tricks there to use, like Non Sleep Deep Rest audios as alternative and incitement.) And in the mornings, get out into the earliest daylight you can or a daylight lamp (I always prefer even the rainiest sky, just staring at that is brilliant for the brain and building up body melatonin so we have more in the evening.) Minimized screen time from 3h before bedtime onwards, including night shift mode. I didn't believe all this, but thought no harm in trying. They say gently pull your sleep forward to 10pm in small increments, that's not my style tho, to do it properly I have to wrench it, even if it meant a few weeks with less than 7h of sleep. It also showed me that I need less sleep than I thought, I feel better under than over 8 hours.
Loads more to be said, this is very simplified. Is that any help?
 
Last edited:
Hi @Scully55

How are you going? There's a lot to learn on here. I hope you are enjoying it :)
 
HI SCULLY, IT HAS BEEN 33 YEARS FOR ME. SLEEP CAN BE ELUSIVE. A RX CAN HELP BUT CAN LEAVE YOU GROGGY THE NEXT DAY. VALERUM REST IS A NATURAL SLEEP AID YOU CAN TRY. TALK TO YOUR DR BEFORE TAKING A SUPPLEMENT. I HAVE BEEN SLEEPING GREAT SINCE I BOUGHT A SLEEP NUMBER BED. THINK ABOUT THINGS THA ARE PLEASANT TO YOU.

Are rheumatologists seeing you all for Fibro? I feel so defeated. 'I just want to find a doctor who cares enough to work with me to find the right treatment for me.' I HAVE SEEN AL TYPES OF DRS. I HAVE FOUND FAMILY DRS THE MOST HELPFUL.'

GOOD FOR YOU FINDING A BOOK THAT HELPS. THERE ARE MANY OUT THERE WORTH READING.
ON LINE GROUPS CAN BE GOOD SUPPORT. I HAVE ONLY JUST STARTED HERE BUT HAD BELONGED TO OTHERS.
 
Status
Not open for further replies.
Back
Top
< >