Don’t make the same mistake I made

Fibromale

Member
Joined
May 4, 2021
Messages
13
Reason
DX FIBRO
Diagnosis
01/2021
Country
US
State
TX
Hello,

New member here. I’ve had Fibromyalgia for over seven years but was finally diagnosed in January of this year. It was caused by extreme job related physiological stress. My life literally changed overnight in 2014. I went to my doctor and explained what happened and told him I had widespread pain, fatigue, headache, and cognitive problems. I left his office with a prescription for the headache only.
I visited the same doctor over the next seven years with the same complaints and was treated for various symptoms but no diagnosis. During that time I referred myself to two neurologists and an endocrinologist hoping to get an answer for my numerous issues. Again, no diagnosis. Finally, earlier this year I referred myself to a rheumatologist and received the official diagnosis.
My point to all this is if you think you may have fibromyalgia, you must take the initiative and be responsible for your own health. Visit a rheumatologist sooner rather than later. Unfortunately, many doctors are unfamiliar with the syndrome and are not able to “put it all together” and make the diagnosis.
My symptoms really haven’t improved much since receiving the diagnosis but I would have saved myself many years of frustration and confusion. I’m hoping by writing this, I can help at least one person not make the same mistake I made. Thanks for reading.
 

ckbmore

New member
Joined
Jan 22, 2021
Messages
4
Reason
DX FIBRO
Diagnosis
04/1990
Country
US
State
CO
I'm glad that you have a diagnosis. I've had FM for over 30 years. The only advice I received from rheumatologist was take Tramadol for pain. Also saw neurologist. Only advice there was what I already knew: gabapentin for nerve pain. So far only thing that helps my muscle pain is Tramadol.
 

Fibromale

Member
Joined
May 4, 2021
Messages
13
Reason
DX FIBRO
Diagnosis
01/2021
Country
US
State
TX
ckbmore - I have tried Cymbalta, gabapentin, and Lyrica but couldn’t tolerate any of them. Thanks for mentioning Tramadol, I’ll bring it up at my next appointment.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,341
Reason
DX FIBRO
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00/0000
Country
Uni
State
Somewhere
ckbmore - I have tried Cymbalta, gabapentin, and Lyrica but couldn’t tolerate any of them. Thanks for mentioning Tramadol, I’ll bring it up at my next appointment.
Be very, very careful with tramadol!

It is as addictive as all other opiate drugs are and most people who take it find that it stops working and they have to take more and more, and the next thing they know they are addicted to it.

My best advice, based on personal experience and the experience of thousands of others, is stay away from all opiates and try other methods for managing the pain instead. Opiate medications are also getting harder to obtain, and you don't want to go down that road.
 

nikkozoo

Member
Joined
Apr 6, 2016
Messages
16
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Pennsylvania
I'm glad you finally have been properly diagnosed and can proceed from there. I have had fibro for over twenty years and have found that research, this forum and keeping track of what is happening with my own body is the best course to follow. I have had many doctors misdiagnose something as not being fibro, leading to tests, sometimes painful, only to find it was fibro. With a proper food regimen for myself and exercise, I have managed to remain functional 75% of the time, just slowed down significantly the other 25%. I am 70 years old, I am not on any medication whatsoever and except for the fibro, healthy in all other areas. I don't take any medication, I don't like it and will always opt for a natural alternative. I think everyone with fibro has to develop a treatment unique to themselves for the best possible results. Hope you find what works for you.
 

Creola17

Distinguished member
Joined
Sep 11, 2018
Messages
118
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
Nv
Just need to clear up a lie. Tramadol (ultram) safe as aspirin! The reason it was classified as opioid was to raise the price. Almost as bad as lies about marrijuana. Wish people would look at history and learn the truth.
(Getting down off soap box)
 

femfatigued

Member
Joined
May 9, 2021
Messages
25
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
FL
I have also been trying to get diagnosed for many years (over 10). I was referred to a rheumatologist several years ago and she said I did not meet the criteria for fibromyalgia, so she said I had myofascial pain syndrome. She was typing away at her computer and I swear she was doing a symptom checker. She based me not having fibro on the fact that when she pushed on a few areas around my neck, it didn't hurt. From everything I have read, they don't even go by that anymore, but even when they did, it's hard to get diagnosed because the day you go to the dr, you may not have all or any of the points they push on. I live near the capital of Florida (Tallahassee). There are TWO rheumatologists in the whole city and one of them does not deal with fibro at all. I called about a month ago and got an appointment for August with the same rheumatologist that I went to last time. I don't want to have fibro, but everything else has been ruled out over and over and I just want to have a diagnosis. Sadly, after reading other posts, it appears that many people, yourself included, did get diagnosed, but aren't really getting treatment that helps. My whole thing was I can't get treated if I don't get diagnosed, but from what I am reading, getting a diagnosis doesn't necessarily bring you any relief, so I wonder if I should just give up again. The only problem with that is I am on the verge of losing my job and if that happens, I am not going to be able to hold down another job and may have to file for disability. I hear that can take years, so how am I supposed to live especially with no insurance. I am just very scared and losing hope.
 

nikkozoo

Member
Joined
Apr 6, 2016
Messages
16
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Pennsylvania
You have to be diagnosed to file for disability so continue to pursue that. If you feel you have all of the symptoms of fibro, be adamant in explaining that to your rheumatologist. If she still doesn't agree, what tests has she run, for what, and what else does she think it could be? She needs to give you some direction. As for treatment, after diagnosis, it varies for each individual. Read this forum, it is very informative, learn what people have tried for your symptoms, it's a process, see what works for you. You may change or add things as you go along, but finding that fit will help you. You don't have to accept just having drugs thrown at you, be selective, it's an every day learning experience. There is hope for a relatively normal, functioning life, don't give up.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,341
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DX FIBRO
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Uni
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Somewhere
Just need to clear up a lie. Tramadol (ultram) safe as aspirin! The reason it was classified as opioid was to raise the price. Almost as bad as lies about marrijuana. Wish people would look at history and learn the truth.
(Getting down off soap box)
Creola17, tramadol is an opiate.
No opiate is as safe as aspirin. All opiates are addictive.
I don't know where you got the idea that tramadol is safe, but it is not. It was classified as an opiate because it IS an opiate-based medication.

Every drug company wants to raise their prices on everything. But they can't classify something as an opiate if it is not. That isn't something you can get by the FDA. The drug is classified by the FDA based on its tested ingredients, and is not just given a classification by the manufacturer.

No medication that is opiate based is non-addictive. Whether a person gets addicted to it or not depends on many factors, and not everyone will get addicted. But to say it is completely safe is simply untrue.

There are many, many fully documented studies, peer-reviewed studies, and credible medical journal articles concerning tramadol addiction and the addiction to other opiates. Treatment centers deal with tramadol addiction all the time.

Marijuana on the other hand, is not addictive, although a person may become psychologically dependent on it. And no one has ever documented a case of death by overdose of marijuana.
Death by overdose of opiates such as tramadol are very common.
 

femfatigued

Member
Joined
May 9, 2021
Messages
25
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
FL
I know I need to have a diagnosis before applying for disability, but I also have other conditions that I think are making things worse whether I have FM or not. I have been diagnosed with vestibular migraines and BPPV (positional vertigo). The BPPV has been treated and is much better, but I still have some dizziness as it is a symptom of the vestibular migraines also. A lot of the symptoms of FM are similar to VM, but the reason I think I have more than just the VM is because of the arm/leg numbness I have had for over 10 years. I also have severe depression and anxiety. It's just so much to deal with all at the same time. I have been reading lots of posts and I know how helpful they can be because I joined a forum for vestibular migraines also and it is awesome to have that support.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,341
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DX FIBRO
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Uni
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Somewhere
I know I need to have a diagnosis before applying for disability, but I also have other conditions that I think are making things worse whether I have FM or not. I have been diagnosed with vestibular migraines and BPPV (positional vertigo). The BPPV has been treated and is much better, but I still have some dizziness as it is a symptom of the vestibular migraines also. A lot of the symptoms of FM are similar to VM, but the reason I think I have more than just the VM is because of the arm/leg numbness I have had for over 10 years. I also have severe depression and anxiety. It's just so much to deal with all at the same time. I have been reading lots of posts and I know how helpful they can be because I joined a forum for vestibular migraines also and it is awesome to have that support.
It IS a lot to deal with all at once! No doubt about that. We all know how that feels, here. So you are not alone.

I felt extremely overburdened by it at first. I said "I can't deal with this". But eventually I realized that I had 2 choices here. Live, or die. Really, that's what it comes down to, or at least that's what it was for me.

If you choose Live, then the next choice is: do nothing, or do something. Now, if you do something it may not work. If you try 100 somethings, they may all not work. but if you do nothing, you know that won't work to help you either.

So, I chose to do something, anf then another something, and it was long and hard and slow and I had to go it alone without human support and without medical support and with a lot of things going against me all around. A lot of things I tried did nothing to help. But some did help. And I decided that if I were going to have to live with this I would do everything I could to make my life as normal as possible. To me there was no other choice unless I wanted to die.

When you are depressed, it makes everything so immensely difficult because just getting through the day, every day, takes so much energy that you feel you have nothing left over for anything else, let along dealing with chronic pain on top of everything else. I know....been there, done that, am there many days still. But I just put one foot in front of another. I do what I can today. Then, I do what I can today. And so on. And I know that it's mostly up to me to do what I can each day to help myself with the challenges in my life.

You can do this. If you want to. And we are here to support you and help if we can.
 

Creola17

Distinguished member
Joined
Sep 11, 2018
Messages
118
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DX FIBRO
Diagnosis
00/0000
Country
US
State
Nv
Creola17, tramadol is an opiate.
Yes now it is. I'm not trying to argue. About 25 years ago (give or take) I was seeing a doctor in California and tramadol was new, long story short. It wasn't classified as an opiate. He loved it because it was better than aspirin and didn't give you stomach problems. But as usual some idiot figured out how to abuse it. So on the subject of opiods, YES VERY BAD. As most drugs are. And I have used and studied and grow and make medicines from marrijuana.
So we OK? Yes, I hope. Just trying to help and keep things straight even if I'm not. Lol
 
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