Forever suffering

Tired of being

New member
Joined
Aug 23, 2020
Messages
6
Reason
DX FIBRO
Diagnosis
06/1995
Country
US
State
IL
I've suffered with this disease for almost 30 years. It has prevented me from having any kind of life. I haven't slept in 20 years, I don't even get hungry anymore. Every day I'm dragging myself to get up & at the end of the day I can't even rest because my body is completely paralyzed. I have tried traditional medicine, alternative therapies, holistic healing, homeopathic remedies. They claim to work. But they really don't & some just make it worse. I have to have a drink of whiskey every night just to get a little bit of rest but then I'm up again an hour, two hours later. I've been up since 1am today. I've been given anxiety medication, pain medication, sleep medication. Nothing. Doctor recently diagnosed me with high blood pressure. I have suffered for a long time. I wish I had something that I could share with the rest of you that works. Unfortunately, I don't. I hope all of you find some relief or a miracle cure comes out.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
734
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
I've suffered with this disease for almost 30 years. It has prevented me from having any kind of life. I haven't slept in 20 years, I don't even get hungry anymore. Every day I'm dragging myself to get up & at the end of the day I can't even rest because my body is completely paralyzed. I have tried traditional medicine, alternative therapies, holistic healing, homeopathic remedies. They claim to work. But they really don't & some just make it worse. I have to have a drink of whiskey every night just to get a little bit of rest but then I'm up again an hour, two hours later. I've been up since 1am today. I've been given anxiety medication, pain medication, sleep medication. Nothing. Doctor recently diagnosed me with high blood pressure. I have suffered for a long time. I wish I had something that I could share with the rest of you that works. Unfortunately, I don't. I hope all of you find some relief or a miracle cure comes out.
Hello Tired,
Your life is definitely rough, and I don't blame you for being tired of it. Maybe if you check out my post on Advice for
People with FM (especially for newcomers) there will be something there that will help. One thing I have learned in dealing with this for years, and that is corroborated by many others, is that you cannot treat this successfully by only using medications. This is a systemic problem and must be addressed systemically. Many people including myself have benefited by doing so, and it is my wish that you do too.
 

Tired of being

New member
Joined
Aug 23, 2020
Messages
6
Reason
DX FIBRO
Diagnosis
06/1995
Country
US
State
IL
Thanks for the advice Sunkacola. As a long time sufferer, the past several weeks have been particularly rough. I just got sick & tired of it & just really needed to vent to others who are in the same boat.

Reading through the threads I've experienced many of the same symptoms at different times. It started with debilitating back spasms, spine compression, numbness in hands & feet, left arm pain, panic attacks, depression, fear of doing something, this led to night terrors, insomnia. Which led to complete body shutdown. I managed it & lived with it for many years. At some point after the closing of one of my businesses I realized I needed to address it. So I withdrew from everything. The problem was that I, like many, was used to being active, healthy. I was never a junk food junkie because my body never let me. It was hard for me accept slowing down. My body was telling me it needed TLC but my mind was telling me no, you need to do something. Like you & others I turned to homeopathy like acupuncture & arnica & such. What I recently realized was, at least for me, was that I needed to look inward & face some difficulties I had experienced in my life. It wasn't easy but things have started to move again. My spine is not as compressed. I started to breathe again for the first time in nearly 30 years. Without knowing it, I had internalized all the difficulties, hurt & stress & kept it all bottled up until my body couldn't take anymore. This is by no means a cure-all & I have to accept that I will never be what I once was pre-fibro. This may not be the case for all. Sometimes pain is pain & our bodies, via genetics or nature, just get worn out.

The only takeaway from this is to give yourself lots of TLC & vent.
 

Eff2013

Active member
Joined
Jun 25, 2020
Messages
58
Reason
Undiagnosed
Diagnosis
00/0000
Country
AU
Hi Tired, your words above really resonated with me "without knowing it, I had internalised all the difficulties, hurt and stress and kept it bottled up until my body couldn't take anymore" . Wow!! This is so true for a lot of people. You are so right, we all need to give ourselves a little TLC. I truly believe that fibromyalgia and any other chronic condition can be traced back to stress and internalizing it.
I wish you all the best. Keep strong and give yourself all the TLC you need. And venting on this wonderful forum is a life saver. I, for one, have found this forum extremely helpful. 🤗
 

JayCS

Active member
Joined
Sep 5, 2020
Messages
89
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Hi Tired, Just an aside on your doc finding high blood pressure...
When my doc a few months ago thought he'd check my blood pressure, cos that can be caused by pain,
it ended up in a chain of 'let's see if' finding out that I have a dyslipidemia, i.e. a very high amount of blood fats,
some atherosclerosis and a pretty high risk of getting heart attacks if I don't immediately take 5 meds and change my diet.
Wow, I thought at least my heart and stuff were OK...
I like you saying you tried a load of things, nothing worked and some made it worse: Same here. Several things made it a lot worse, sometimes for a few months.
The only thing that is making it better is cold barrel therapy in combination with gentle osteopathy and gentle acupressure,
a cold shower in between and an intense breath exercise.
All the best... keep going...
 

Jemima

New member
Joined
Jul 30, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Without knowing it, I had internalized all the difficulties, hurt & stress & kept it all bottled up until my body couldn't take anymore.
Your description rings really true to me, too. Huge amount of trauma over the course of my life that I just stubbornly battled through - feels like my body is baring the brunt. Having had no luck with any other tactics purely for the fibro, I'm finally seeing a heavyweight therapist, working with CBT and mindfulness training, and am seeing the glimmer of a breakthrough. Wish I'd done it years and years ago, rather than turning everything in on myself. I really hope you continue to make progress, and find a new kind of normal that has space for abundant happiness - we can't go backwards, but we can create something new. Good luck ❤
 

Tired of being

New member
Joined
Aug 23, 2020
Messages
6
Reason
DX FIBRO
Diagnosis
06/1995
Country
US
State
IL
Hi Jemima, I too recently started with mindfulness through something called Stoic philosophy. It reminded me of the strong person I used to be mentally. When your in a relationship for a long time like I was we forget how to rely on ouselves. I really needed to hear it. Stoicism for beginners by Tobias Entwistle if anyone is interested.
 

Tired of being

New member
Joined
Aug 23, 2020
Messages
6
Reason
DX FIBRO
Diagnosis
06/1995
Country
US
State
IL
Hi JayCS - in searching for more treatment, I recently found Stoic Philosophy which focuses on your inner strength. It really reminded me of what I once was. Look at my reply to Jemima for a starting point if your interested. There's also something called Dark psychology by Micheal Morrison. It sounds scary but it's not. It's very insightful about the human psyche. This may not be for everyone but it's just a suggestion. It definitely gave me a breakthrough especially with my high blood pressure.
 
Top