I'm new to this site and its very disconcerting to read about people receiving abuse on here. Nothing really goes into much detail about what's happened and I don't really wanna be abused when all I'm looking for is support. I've had aching limbs and strange symptoms for years. When I was about 14 my mother took me to doctors as I was complaining about lots of pain in my limbs. Doctor said it's growing pains and sent me home to get on with it. Well that's just what I did. Got on with it for over 30 years. Only recently have I discovered fibro. I've been to doctors on a number of occasions over the last 4 years and after lots of blood tests I've shown to have higher than normal muscle enzymes which my doctor said could be fibro. So still not a definite answer. In order to cure my paranoia I've told myself it's fibro. Cancer has been prevalent in my family and every ache and strange symptom sends me into a panic. Everything points to fibro though so that's what I'm sticking with. I guess my point is us fibros have probably suffered enough what with disbelievers and such delays in diagnosis. Not to mention the mood swings. We don't need to be abused when we log on here for support. Just remember we're all in the same boat administration too. They do a good job. Especially when they suffer from fibro too.
I'm new: I'm new to this site and its... - Fibromyalgia Acti...
I'm new
So sorry you have found our site with drama and fears of abuse. Please don't fret, the person or people, I'm not sure exactly of the details. But all i saw was someone upset that they were being asked not to use foul language. They were pretty upset and i hope they are better now. But i promise you, i have never been abused here, and i haven't seen a lot of anything like that.
Anyways, welcome to the site. And I'm sorry you are struggling with this.
I did a quick Google search of muscle enzymes and i haven't heard of elevated muscle enzymes. And found this:
"Creatine kinase (CK) is an enzyme found in your muscles. Enzymes are proteins that help your body's cells do their jobs. The level of the CK enzymes rises when you have damage to muscle cells in your body. The three types of CK are called isoenzymes."
This makes sense with my understanding of my body. Or how I've found improvement.
Stretching, range of motion exercises, juicing fresh fruits and veggies, massage- which brings blood flow to the muscles helping them heal, and Apple Cider Vinegar with mother drinks. There is more supplements and such i could go on about but i personally feel this is the jist of what had helped me the most.
I researched what muscles and cells needed to function properly, and that had helped me figure out how to help my body. I kind of have to treat myself like an athlete without the sport. Or fibro is the sport and i just have to recover and heal constantly from whatever it is doing.
Sorry if i didn't make sense.
Please ask if i need to explain anything.
Take care×××
Hey that's great you Google it as you hadn't heard of it. I had another person who hadn't heard of it too. The trouble is I'm still a little in denial. Thinking it's all in my head and there's nothing wrong with me. When someone says they haven't heard of muscle enzymes and they have fibro and belong to a forum like this this, it makes me think I'm wrong and nothing is wrong with me. I know the person meant well but did make me think until you Google it and said that kinda figures with you. Meaning you understand the enzymes thing. Thanx mate.
I totally agree I treat myself like an athlete, I was an athlete but now I am fighting for my life. Muscle enzymes you bet I was diagnosed with the same thing as odd as it sounds. My diet is a vegetarian diet now, I quit taking creatine to build muscles, a supplement which is a little research to support it, and exercise five days a week lifting weights in the gym, although I bring a cane to the gym and are the only one a cane!
I think the muscle enzyme diagnosis is probably right on my doctor explained it to me but I really didn't understand it. I did my own research and change my life accordingly I have looked for anything and everything because the pain that I have and I'm still searching. I probably have 100 things that I think I have and only a few that are documented doctors really do not understand fibromyalgia Nippon told one more time this is a fictitious disease well I just get tired of it as why would I continue to go to the doctor if nothing was wrong with me… We have to pay big money here to see your doctor as it's a business. I go to neurosurgeons because of spinal cord injury and multiple thoracic and lumbar fusion and these guys can't operate on fibromyalgia so they discounted is a disease that is made up of our mind
I take abuse from doctors, I finally went to one for my hip today to get an injection because I have a vascular necrosis I'm on other things now taking over my hip and he believed fibromyalgia was prevalent. Thank God. We're avascular necrosis came from out of all of this I have no clue… Probably from My spinal cord injury just one more thing to overcome and I will keep on keeping on
Did your spinal chord injury kick start the fibro. Did you get symptoms after this injury as I've read fibro is often related to some major trauma. Not sure if that's true as of most things to do with fibro. I really feel for you mate. Sounds like your symptoms are more serious than mine. I'm mild compared to yours although I've been worse in the past than I am at the moment and for some reason I tend to forget how much pain I'm actually in sometimes. I have arthritis too which I've read can go hand in hand with fibro. Thing is on the outside I look fit as a fiddle so people tend not to believe me. Sometimes on the inside I'm in agony. Some days are better than others. I tend not to talk about it not even to my partner. Don't think he believes me anyway. Thinks it's all in my head. Today my legs have been pretty weak. Just climbing the stairs at work caused my legs to ache and want to sit down. Every day it's something different. At least I've found others.
You know, I think it did after the spinal cord injury as before that I had four lumbar fusions but never had nerve pain everywhere in my body. Oddly enough they could not find the spinal cord issue as my right hip hurt so the doctor did MRI on lumbar said I was fine sent me home came back sent me to physical therapy six months later on falling down like I'm drunk and he says well let's look in the thoracic probably nothing… Sure enough I did ask broke severed my spinal cord squeezed in cord. I had a successful decompression and thoracic fusion but the spinal cord was damaged I still can't feel my fingers which is why I voice text things and they come out bad and I drop pretty much everything that I pick up have trouble typing can't feel my toes feet or cves either since then
But after that all of the nerve pain started in every area of my body not just in my back. I have it in places that surgery has never existed and that should not hurt and it's unexplainable. Recently in the last couple months I was diagnosed with a vascular necrosis in my right hip… Went for injection today more imaging and I need a total hip replacement. The cause of that also most likely the spinal cord trauma that cut off the blood supply to my hip that's causing my tissue to die and the bone to be dead. So I think you are right on I never had all of these problems well I had a lot of fusions but never all of this nerve problem dying to shoot a vascular necrosis and all of the stuff until the spinal cord injury since then it has been paying everywhere 24 hours a day seven days a week and I am like you I never know what I'm going to feel like from day today or what the first step will feel like getting out of my bed… Right now it's not good because i'm walking on a nerve in my hip due to dead tissue
Just seems like that one thoracic fusion spinal cord injury opened up a lots of other things that should not be happening but such is life you just have to deal with things as they come up. I'm 54 was an active bodybuilder for past 30 years still take extremely good care of myself and never expected my hip to go out to… But such is
I am off all pain medications as I was on them for too many years and they really messed up my lifeor I thought they did anyway
I suppose I could've hurt more in the past years but I was so doped up on morphine that I didn't feel much of anything and perhaps it's now that I've decided to be clean I've been off for one year but I feel everything I don't know.
Long answer to a short question I think you're right. The thing with the hip is I'm laying in bed and it aches even in bed there's no comfortable position… Should not have given up the morphine ha ha yes I should have I like to hear the birds singing and life and there is no life when you are strong out on painkillers
I'm sorry you are struggling with all of that. And I'm sorry drs after being abusive toward you.
I love your healthy gym routine and diet. I was on my way to that kind of diet, but I'm not sure i could get rid of chicken completely and shell fish also are my weakness. Raw vegetables make me feel wonderful. I have been struggling with my routine, but am working on straightening it out.
Apple Cider Vinegar with mother drinks has helped me tremendously with the way my muscles feel. Not sure if it is only the anti inflammatory effect or something more.
Good luck with Any more injections or operations.
Take care××
Thank you. I feel very alone in this as no one else that I know… That works out at the gym with me… Has any of these problems and they just call me the bad luck they all respect me for showing up there every day regardless and working out harder than any of them that is one thing that still makes me feel good. I still bodybuilder yet much lighter weights and still eat very healthy. I don't know why all of this stuff happened to me but no one really knows why things happen to them you just got to have to accept cards that were dealt do you try not to complain, and less you're on a form that allows it ha ha and get on down the road though getting on down the road is a huge pain in the butt these days no pun
I still revise my workouts from week to week, I still think I'm going to make progress and I still have hope that I'm going to out run the problems to exercise and diet and I'm sticking with that. Currently I'm trying to out run a hip replacement by building the muscles around my rear end and back so tired that they support I did a vascular necrosis hip. Where is my latest dilemma that I am dealing with is a vascular necrosis and my right hip and most likely knee. This is totally new for me as I've only had back and spinal cord issues to date I stepped out of bed one morning and my hip gives out go figure. Didn't hurt before just one day it dropped and has never been the same since March. I will get a hip replacement in January when I pick up insurance again if our brilliant ha ha Ha US president doesn't remove pre-existing conditions from the health insurance and exclude people like me who were recovering from a surgery and dysfunctional to pay bills for a couple months so help insurance canceled and they were rewritten
So I'm dealing with all of this without any insurance and a country who does not give a hoot about their people but health-insurance is a business so it has been a real struggle. This is the first year I have not carry health insurance and what does Murphy's Law say… January renewal I was in the hospital mid February my hip goes out no insurance. However getting the health insurance company here to even pay for such an operation is a taSk
Sorry I voice text because I can't feel my fingers from my spinal cord injury and I make a mess of words and ramble. I lost my train of thought but I guess what I'm thinking is if you ever need any help on a workout program let me know because I know, I have trained people and I am very astute I am at least it's on my life
I have found however it going on 55 years old that muscles just don't respond like they used to so I am over ambitious and my goals sometimes. However I have made progress in the last for five months and building muscle in my back and rear in to support I dead hip
Oh my pants don't fit anymore because my route and we came to around from training but better to not fit into pants and be able to walk a bit anyway
It's my bedtime 8 o'clock here… Signing off… Would go out on the porch and sit but it still 110° it near 8 o'clock here UGG got to love Texas or not. It does not cool up here for a few months usually near Christmas before we get days less than 90° these days anyway
Sounds like your really going through it at the moment. I've read a few studies on fibro and some have pointed to a major trauma in your life. Think it means a physical trauma. Can you think of a serious accident that may have triggered your symptoms. Just some trauma which then lead to your symptoms. Hope your feeling better soon.
Yes. I fell off a 24 foot ladder trimming a tree 4 years ago. Landed on my side, tore meniscus tendons. It was a horrible fall and did not land on grass, but pavement. Prior years 25 years ago during a "wilder" time in my life I was involved in 6 total car collision. One I was thrown through front window at over 100 speed. A year later, I was run off road by huge truck, hit the concrete under the overpass, flipped my car around and was thrown out rear window of car. They had to extract jeweler from within my body .... it was that hard of a crash. I have been victim of some very hard car crashes. I suppose any could have done so. The doctor also said repeated head collision in my many years playing football.
Is this trauma? 
Yes, the last few years have been tough and it seems to not end....
Hello and welcome Bump196 to our friendly forum where you can find advice, support, help and understanding. Our mother site fmauk.org has a wealth of information including guides and links and is well worth a look.
I am sorry to read you have been undiagnosed for so long, unfortunately there is no one test that can definitely say you have it, just it's the last resort diagnosis when all other tests are negative.
You are not alone here, many members have waited years for a diagnosis and it can be a double edged sword. It feels good to put a name to the way you have been feeling, on the other hand it can be depressing to learn you have a chronic condition with, as yet, no hope of a cure.
Looking forward to seeing you around the forum and welcome again.
x
Welcome this is a happy caring forum please believe that where we help each other in lots of different ways, don't really know what has been going on and all I would like is for it to be finished with and carry on as before.
Love & Hugs
Xx
Hi Bump196 and a warm welcome. Please do not feel concerned that you will receive abuse and not support. There have been a few issues over recent days however these are being dealt with.
I have not personally heard of raised muscle enzymes being a sign of fibro .
Xxx
Thank you. I feel very alone in this as no one else that I know… That works out at the gym with me… Has any of these problems and they just call me the bad luck they all respect me for showing up there every day regardless and working out harder than any of them that is one thing that still makes me feel good. I still bodybuilder yet much lighter weights and still eat very healthy. I don't know why all of this stuff happened to me but no one really knows why things happen to them you just got to have to accept cards that were dealt do you try not to complain, and less you're on a form that allows it ha ha and get on down the road though getting on down the road is a huge pain in the butt these days no pun
I still revise my workouts from week to week, I still think I'm going to make progress and I still have hope that I'm going to out run the problems to exercise and diet and I'm sticking with that. Currently I'm trying to out run a hip replacement by building the muscles around my rear end and back so tired that they support I did a vascular necrosis hip. Where is my latest dilemma that I am dealing with is a vascular necrosis and my right hip and most likely knee. This is totally new for me as I've only had back and spinal cord issues to date I stepped out of bed one morning and my hip gives out go figure. Didn't hurt before just one day it dropped and has never been the same since March. I will get a hip replacement in January when I pick up insurance again if our brilliant ha ha Ha US president doesn't remove pre-existing conditions from the health insurance and exclude people like me who were recovering from a surgery and dysfunctional to pay bills for a couple months so help insurance canceled and they were rewritten
So I'm dealing with all of this without any insurance and a country who does not give a hoot about their people but health-insurance is a business so it has been a real struggle. This is the first year I have not carry health insurance and what does Murphy's Law say… January renewal I was in the hospital mid February my hip goes out no insurance. However getting the health insurance company here to even pay for such an operation is a taSk
Sorry I voice text because I can't feel my fingers from my spinal cord injury and I make a mess of words and ramble. I lost my train of thought but I guess what I'm thinking is if you ever need any help on a workout program let me know because I know, I have trained people and I am very astute I am at least it's on my life
I have found however it going on 55 years old that muscles just don't respond like they used to so I am over ambitious and my goals sometimes. However I have made progress in the last for five months and building muscle in my back and rear in to support I dead hip
Oh my pants don't fit anymore because my route and we came to around from training but better to not fit into pants and be able to walk a bit anyway
It's my bedtime 8 o'clock here… Signing off… Would go out on the porch and sit but it still 110° it near 8 o'clock here UGG got to love Texas or not. It does not cool up here for a few months usually near Christmas before we get days less than 90° these days anyway
Welcome don't worry we don't abuse on this fourm we are all in the same boat so don't worry we help each othet
Hello let me put you straight this is a loving careing foram and it's only recently with a few new members that got out of hand But these people come round in the end becuase they will receive love and surport in the end I my self have been surspended on here also had abuse too You will get surport and love here so don't be put off ok We've got a great Admin team to look after you ok
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