Hello there folks, My name is Sachi - Its been a while since i have tottered about on forums for FMS. But it seems that i've hit a bit of a wall. I need your help - if you can give it.
Since this is a LONG message, i'll tell you what i want at the top in case you wanna skip my history. What i am looking for is the following.
1. Any research indicating that the AMA has it WRONG. Narcotics ARE in fact successful for many people with FMS. (point of fact, in over 17 years having met and spoken to thousands of fellow FMS patients i have never, not once, met one who did not get pain relief by narcotics. So where is the AMA getting this hogwash?)
2. Personal experiences - i would love to know what has worked for you guys. What DOESNT work for you guys, what has been successful for you guys.
2.a. I'd also love to know if the drugs designated for FMS treatment have worked for you guys. IE: Lyrica, cymbalta etc. Because they didnt work AT ALL for me. Not even a little. Plus they made me sick, knocked me silly and caused me to gain weight. Side effects can be withstood if the drug HELPS, but if the relief you get is nil-to minimal - whats the point?
3. Any new research regarding FMS, links, etc. Something that doctors will respect is preferable.
Thanks, in advance - Feel free to read my quickly written personal account and experiences bellow. I just find with long posts, its always good to make what you are requesting CLEAR at the begining in case some one doesnt wanna read that much - makes the chance they'll ignore you less. Be well!
I was diagnosed with FMS after years of agony, 2 casts and a splint on my arm because doctors didnt know why i was in so much pain, and thousands of sleepless nights when i was just 14 years old. I'm now 31.
Since my diagnosis i was put on just about every drug that they could think of. I tried the whole HOST of NSAIDS, and The Amnatryptaline Family of drugs within my first couple of years. 600mgs of IBprofin every 4 hours destroys a 14 year olds stomach - i can attest to that!
After unbearable pain for years, i started taking Darvocet. And Gabapentine, though the gabapentine didnt help with the pain it DID keep me asleep, restful sleep. So one pill found successful, albeit NOT for the reason it was perscribed. WE counted it a win regardless.
Problem was, while the darvocet helped a bit, it wasnt enough. I couldn't go to school, i couldn't run and play like the other children. I was dsabled... and imagine being 15 years old and told your SOL. You'll always be in this much pain, nothing and no one can help you. You have to learn to cope in a world that doesnt even understand wat FMS IS! Cause this was over 15 years ago. Before i even got seen by a rhuematologist, i was designated as "Pain is in her head, not real" cause thats what they thought of fms at that time. We know better now.
So, in the effort to find more effective drugs, over the years found me trying Percocet, then Oxycontin with darvocet as breakthru pain relief. Then a doctor went through a kaniption fit and he decided he wanted me on a fentynel patch. LIVING hell. Week of living, breathing hell. After a week of screaming agony on my couch, crying and unable to move or even really ask for what i needed. My dear mother, thank god, called the doctor and demanded he get me on something else right away. So Fentynel patches did not work for me. He kept trying to increase the dose, but it just didnt work for me.
They raised the doses, gave me trigger point injections, put me on everything they could think of. Finally, i got somewhat stable on a dose of Oxycontin with a breakthru pain med. Until i lost my health care insurence. In an effort to help me, my pain specialist put me on Methadone, because it was so much cheaper, but also cause he thought it would help.
and it did, help i mean, but it also had an unfortunate habit of knocking me six ways from sunday. With percocet as my breakthru with the methadone, i stayed on this for a bout 5 years. and i was on a rather normal dose. NOT dangerous levels at all.
Until i got very very ill. Now, here i'll mention that for years, since i was a child, i have been very sick. For me its hard to tell what is FMS and what is this undiagnosed condition. because when you hurt all the time its hard to tell if something new, and even worse, is happening in your body. But there is no doubt in my mind something ELSE is happening in my body. Something no doctor will bother to look for because of my FMS and my weightloss surgery. Everything wrong with me automatically falls within those two catagories. Despite the fact there are so many other signs of problems.
I began to get very sick, very weak, and couldnt make it up stairs. I fell outside, and couldnt get back up. This at such a young age. I ended up falling into a coma, where i was expected to die. I did not, clearly, but i have raging infections, nothing seemed to contain them, none of the medicines they gave me helped. the only thing successful was Vancomyacin *but i tested NEGATIVE for MRSA
While i was in the coma the rapid detoxed me off methadone. When i woke, i had over 100 pounds of extra water weight on me. I had to relearn to walk etc. Here is where it gets a bit tricky....
To manage my pain, everyone agreed that Methdone wasnt the best for me since my quality of life was so... well, unconcious. We tried MScontin. But due to my weightloss surgery we found soon that the pills didnt disolve properly, and only the LIQUID worked. But the liquid is designed for quick acting, breakthry type relief. and i have constain pain. Over the course of about 8-12 months we raised my dose to a staggeringly high level....
BUT.... i had a real quality of life! oh, i'm still disabled, frightfully so, but i could make myself lunch. I didnt hide in bed every morning tll the last possible second to get up and go to the bathroom due to pain. (its never a good sign when you have an accident in bed beause your pain caused you to wait too long before you could physically forced yourself to get up. Thats not something most doctors can even pretend to understand.)
So, we raised my morphine use slowly, methodically, until finally i had the BEST quality of life i every have had. Its not like a normal person, i dont remember what it feels like to be less then a 4 on the pain scale. But i live usually between a 4-6 on my good days. and when you were used to 8 and 9's, tthats something to cheer about.
But my doctors stopped searching for that sneaky illness, and even tho i was doing well, i started to get really sick again. Again, nauseaous, again, i got weak, again, i couldnt stand up from my couch, and again, i went into a life threatening coma. One they said, i would SURELY die in.
But again, i survived.
We are two years out from the second coma, and again the docs are forgetting how severe and near death i was. They explain it away by saying it is related to the weightloss surgery, or the meds i've been on. But i've had these symptoms since before i was even diagnosed with FMS!! So i know its not that.
I havent even mentioned the fact i also had ovarian cancer, and amazinly survived it. But the meds i'm on, the morphine, my GODSEND, its all the stupid doctors will look at!
One thing they repeatedly try to tell me is that FMS patience do NOT find relief with any types of narcotics. Its funny to me because its the ONLY thing thats worked for me - none of the so called "FMS Drugs" like cymbalta or lyrica did anything for me. The only relief i get is from the opiods. And i HATE being drugged. I would love to be off everything, hand to god.
The funny thing is - i've actually never met or spoken to another FMS patient to said narcotics didnt help their pain. Not once. and i've been diagnosed for over 15 years and spoken to THOUSANDS of other patients.
This new AMA report saying FMS patients shouldnt be put on narcotics is a farse. But how do you show the doctors this? How? The only way is to point them to recognized studies that conflict with the AMA's information.
I'm looking for research, personal experiences, ANYTHING That can help me. My doctors are trying to force me down, which is putting me in so much pain. I have one doctor who supports me in not being forced. But she also sorta looks down her nose at my choice. I've gone through this a million times, every new doctor wants to try everything again - never mind i've been through everything with each past doctor. I dont wanna try lyrica for the 5th time - would you? If you knew it didnt work and had tried it multiple times - would you want to go through it again? :sighs:
Personal experiences - what you have, what works, what doesnt - that would be GRAND. But also, any links to respected research regarding FMS and pain management. Also long term affects on narcotic use for pain management.
What they dont seem to grasp, is that i understand the trade off. If my choice is to live for 20 years less, but have a life thats worth living - hell, i'm good with that.
I know some FMS patients don't experience the type of pain i do. Some have mild cases. That isnt the way it is for me. I am in literal screaming pain, pain so severe that to get brief seconds of releif i'd punch my legs for the instant of numbness the shock to my nerves created. Pain so severe i couldnt sleep, so severe i'd be screaming and neighbors would come to see if i was dying.
Going back to that isnt an option. I need them to grasp this - unfortunately, this new AMA report, which literally makes zero sense to me, has a GRAVE impact on the doctors.... and all the while i have some sneaky infection that hides in my system and pops up every few years to try and put me in comas! and all the doctors wanna talk about is my morphine use. It doesnt make any sense! Its laughable, if it wasnt so sad. and frightening.
So, any help folks? Any research info? Anyone agree that narcotics didnt help them? Anyone have personal experience that might help me?
The above story is a VERY short and condensed version of my experiences, and i'm sure i forgot at least half of what happened, and what i tried. But just imagine everything i'd have been through and tried to be put on 80mgs of liquid morphine 6 times a day. (with less side effects then with anything else i've taken.)
PS, i'm in washington state. Thought to be one of the worst states hands down for chronic pain management.