Life-long Effects from Fibro

[Turtle]

I have been doing a lot of research lately on this dz, and after digging and digging, I found some information on loss of gray matter. They equated the loss of gray matter in the brain to that of Alzheimer's. Unsure as to the exact reason, but potentially from always being in a chronic pain state. They looked at various age groups of people with Fibromyalgia, and the research found that those aged 50 and up had a substantial loss of gray matter. For those under 50, they believed that the brain was viable, capable of compensating for the added stress of always being in a chronic, diseased state. But at age 50 and after, the brain was aged, (and in my words) probably tired from always being in a constant fight/flight mode. This causing break down and loss in areas of the brain...I found this information very interesting, as I have never had anone offer this information nor did it come by easily. All the information offered on this dz is so uniform and generic, as if they all want us to think the same thing...Here, take your antidepressant and a tylenol, and you'll be fine. I don't know about everyone on here, but I don't feel fine. Haven't in 4 years. I feel like a shell of the person I use to be...And I'm not the only one capable of seeing it...Any thoughts on this matter? I intend on doing more research, as I love anything medically related, I'm a CMA unable to work right now, and would love any and all input or any other research information that isn't publicly known. Thanks!

 

[TipBill]

I totally agree with that. I also am a shell of the person I used to be. I think there is something wrong with my brain. I don't feel any joy in anything anymore, even my grandchild. I have lost interest in everything I used to love doing. I have two types of days. Days when I can barely function and days when I can't function at all. PCP has said I am an unusual case and doesn't really know what to do for me. I don't want any more medication so I just plod along. I am 60 and it scares me that I could live another 20 years like this. If I don't find some kind of help soon I am thinking of having myself committed. Maybe they can do a brain scan and figure out if I am missing or losing something in my brain. Hopefully this to shall pass.

 

[diamond]

I am with Krista i did ok with fibro from age 47 to 54...when a big emotional kick in the teeth spiralled my fibro bit by bit to unbearable...i tried fighting back and had already been fighting ever increasing and severe problems that robbed me of more and more basic functioning.

Mentally I made pacts with god that i didnt mind if i couldn't talk much or chew because of jaw pain but please let me be able to walk and use my arms a bit....please give me a break from weeing and pelvic pain 24/7 too but no after a while i got that permanently too and now suddenly throat/stomach/oesophagus pain and bowel issues 24/7...then migraines and face pain joined in every day....backache neck and shoulder pain became daily not just with over use.

So here i am 55 just like Krista housebound and in bed...getting up days are a luxury.18 months ago i could put together a complex letter ....deal with any household issue effectively ...but now my head is swimming in glue beaten up by stress and pain.

Even when I am asleep my mind knows I am living this hell and it is full of nightmares and waking up in so much pain i can barely stop from screaming out help help.

I really can't imagine being in this pain for another 20 years and i dont think anyone will believe a human being could be in this much pain. It's not even just pain I feel soooo ill.

So I am too a shell of the person I was ....well groomed....up beat always busy and full of positivity and humour...up at 6 am doing the housework radio on singing along with my morning Cuppa...oh happy days.

 

[Forgetmenot]

Well after being told I might go blind in my right eye dew to a tear that is just around the corner this has really cheered me up .��lol

 

[Jake]

Hello all. I'm new here. I was diagnosed in 1998, after living in pain for almost 20 years. Yeah, at first it's all in your head. Then, 'no one could possibly live like this and still function'. Finally, I took back my life. Yes, I still have pain, exhaustion, stiffness, and all the rest of it, a lot, but I learned that I had to keep going or just give up. When it comes to feeling like I'm losing myself, I have to step back and re-evaluate things. Sometimes I just expect too much or I'm way too critical of myself. Other times, it's difficult, but at almost 60, I just have to accept that this is my life now. Some days are easier than others and I even have the odd day that I think is close to 'normal'. Eventually, you just have to stop living in the past. No more grieving for my old life.

 

[navi]

This should give you some relief. Caught fibromyalgia at the age of three and an entire life full of this s***.I am 27 now and don't think i would really want to live after another 2 3 years if they don't find a cure.I can just laugh at inhumanity of God.

 

[Chexmix]

Hi turtle, I'm currently reading figuring out fibromyalgia by Ginevra Liptan, MD. A book written by a doctor with fibro. It's insightful. Totally fight or flight based...also fascia related which is a mystery to the medical community. I did see they are coming out with a new prescription med for fibro...something to help with sleep, different than the 3 currently approved in u.s. By FDA for us. It's complex...we don't get deep sleep, don't make enough growth hormones and repair things overnight so continue in this cycle of pain and poor sleep and all the other "special" side effects that go along. Good luck with your research. Please share findings with us!

 

[diamond]

I am in full agreement with the flight of fight based conclusion.

 

[Cheryl Ann]

Well after being told I might go blind in my right eye dew to a tear that is just around the corner this has really cheered me up .��lol

Hello Forgetmenot,
How sad and scary. Of course you will adapt OR you never know, with prayer and the right doctor/ surgical team, the torn ligament or whatever it is that is torn will be repaired successfully.
Please keep us up to date.

 

[Cheryl Ann]

I just read some interesting information tonight. Have you ever heard of the Dynamic Neural Retraining System? I recommend Googling it just for the simple fact that not only is it interesting but it has given me the best definition/explanation of Fibromyalgia that I have ever read to date.
Basically, it's about retraining your brain.
I am hoping that you can also retrain your brain to break the cycle of pain through meditation but one would have to be diligent, mindful and focused.
The following are 2 excerpts from one Fibromyalgia theory.
"Fibro is a Limbic System condition brought on by neurological trauma caused by a physical trauma, surgery, infection or significant psychological stress such as: childhood stress or prolonged or severe stress."
"The condition of Fibro indicates that the brain is stuck in a distorted self-protective mechanism, centered on pain perception. This cross-wired neuronal circuitry directly affects the physiology of the body and manifests in any number or combination of symptoms. In response to a chronic trauma cycle, the body's abilities to rest, digest or regenerate are affected, interrupting the normal growth cycle and detoxification process, catapulting the brain and body into a cycle of chronic illness."

I hope this is helpful. I found my rheumatologist. I was told to call next week to set up an appt. He's been practicing for 37 years... no wonder he's so good at what he does. I am going to ask him about all this.

 

[Cheryl Ann]

Hi Jake and Navi. Welcome! This is a good place to be.

 

[diamond]

A long thread that was going on about 6 weeks ago i described my understanding of the link between fibro and the hpa axis, the limbic system and the amygalda which stores trauma/emotional memories.

This turns up the volume on our sympathetic nervous system ie the flight or fight response until it gets stuck and all our responses governed by our central nervous system become over sensitized as a result.

A guy called Gupta has written books about retraining the amygalda to cure/improve fibromyalgia...basically calming it just as Cheryl Ann describes.

 

[Loftpat]

I'm a huge believer in mindfulness meditation for pain. With meds, exercise, supplements and meditation, most days I feel like I have the upper hand on pain. Granted, it's always there, but I can deal. Until the flares. So, what's with the flares? I've been keeping track and have a better handle on what may cause a flare. I can manage my stress and over-extending myself, but I can't do a darned thing about stuff like the weather or illness. Then there's the random flares that just hit me out of nowhere.

When fibro slammed me after a bout of viral meningitis, the world came crashing in on me. I don't often look back or bemoan this illness anymore. The pain sucks, but the fog and fatigue are the big challenge. When I can't remember where I am going, can't find words, have problems remembering what I read, and struggle to write cogently, that can be difficult. (It's taken me a half hour to write this post.)

Until there is a cure, I'll keep following good and duplicated research and keep adding to the mix. I, too, want to learn everything I can. Thanks for sharing this info.

 

[Turtle]

I apologize for not responding sooner, but I just want to say thank you for all the responses. I have read about the HPA axis being affected, inadequate amounts of GH, an overabundance of substance P in the CSF of the CNS, and several other theories. Then their is also the research that was done in Chicago with the development of the first blood diagnostic test that uses biomarkers in the blood to identify Fibro, which is called the FM/a. I do believe that research is headed in the right direction, but I also believe that not enough advancement has been done. Did you also know that 300 million dollars a year are spent toward Cancer Research, whereas only 3 million dollars is spent toward Fibro Research. Did you also know that this disease dates back hundreds of years, but until here recently it was thought to be psychosomatic. The first nurse, Florence Nightingale, was also known to have Fibromyalgia. This case dates back to WWII...I continue to do research as much as possible, but unfortunately, don't have as much time as I would like. I still have to somewhat function as a wife and mother, which I'm sure a lot of you can relate to...I just hope more than anything that this disease can be fully acknowledged by EVERY medical professional. When going over my daughter's family medical hx the other day with her Neurologist, he actually laughed when I told him that I have Fibro. I later asked him why, and he said that everyone seemed to have it. Laughable matter, I guess--totally being facetious. Anyway, acknowledgement and empathy, not sympathy, would be great to start with. For now, all we can do is pray and leave it in the Lord's hands. He all gave us this path for a reason. Until next time, God Bless Each and Everyone of You! Xoxo

 

[Cheryl Ann]

Thank you Turtle. I don't understand most of what you said at the beginning of your post so I guess I too, need to keep researching. What you have written lightens my mood. There IS hope for a cure.

Peace.