Yes ,yes & yes again.
Like you I believe I was either born with it or it started shortly afterwards. Was always a sickly child my fathers joke was they ( my parents )didn’t. Know which way up to hold me for the the first six months of my life. My mother cried on my 21 st birthday as she never believed that I would live to reach it. Before she passed away she asked me to forgive her for sending me to school as often as she did otherwise I would never have gone Like you I am only just connecting all the dots in my life so far… I was diagnosed in May this year. But actualy was pre diagnosed. With fibrositis at least six years ago… But that’s another story. Too tired to continue.
I wish you well,
Janie
I found this in my search. Hope it's helpful!!
3 years ago this coming Feb. (Valentines week, I own a flower shop so I remember) I came down with Pnemonia. It was terrible, I was so sick. Then last September I came down with mono. I was so sick once again, could barely go to work, had to come home and go to bed. Went to the doctor, they did all kinds of bloodwork and found the mono. I’ve read some stuff online that says Lupus can follow Mono. I was diagnosed with the Fibro this year. They still won’t say if I have Lupus or if I just have some autoimmune disease. It is very frustrating to not know the cause or be able to get something that will “cure” this. I am sick and tired of being sick and tired! Feel like I’m run down and I’m ready for some answers. My bloodwork also showed inactive Parvovirus. So, I really feel like stress, viruses contributed to me having Fibro and this autoimmune disease.
FM is really a mystery. They have made progress - at least most (certainly not all) realize that something is going on. I was going to ask folks if they remember as a child being poked by another kid of punched in the arm or smacked on the shoulder - not so hard as to injure you, but do you remember it hurting far more than it should have. I can remember kids doing that kind of thing and I would cry out and they would reply that they hardly touched me. But it hurt and it hurt for quite awhile - I guess they poked other kids and didn't get that reaction and so when I got it - I yelped! I have a theory that you are may be born with it and during the years and all that we do to over-tax our bodies, and again, that stress and trauma (which comes in so many forms), the de-generative process that aging provides - we end up in the FM mode.
I have 2 sons 21 and 18 years old. The 18 year old is genetically more like me (Lord help him) and he is exhibiting signs of FM and has for several years now. So, when I read that other kids are showing signs and mabe remembering back to our own childhood and chalking up the tenderness and headaches, etc. to being a "wimp" maybe this indicates the scientific community should be looking to younger kids for some of the information.
The information out there is showing more often that FM is neurologically based and the tests they have performed on FMers (as opposed to the control groups that do not have FM) show significant differences. Not so much in the blood tests - they haven't come up with a protein or substance specifically to check the presence of yet. So they check by way of symptoms - many of these are neurological in nature, such as:
vertigo, balance issues, gait problems, loss of hearing, tinnitus, blurred vision, just to name a few things.If you google neurological symptoms of FM - there is a site for NIH that you can download a paper by Watson and in that is a list of symptoms - Table 1 I think.
The subject of trauma comes up over and over again and trauma (again, all kinds - physical, emotional,etc) changes the physiology of the brain - it messes with the chemicals referred to neurotransmitters, which is how the brain does what the brain does - a decrease in serotonin for example- and that change, whatever it ends up being, is unique to the individual. Even long-term stress, which the body is not meant to deal with, can cause damage and changes to tissues - muscle, cardiac, brain, etc.
I have done a alot of research on fibro bc I was dx with this "CONDITION" or "DISORDER" 20 some yrs ago. the past yr I have been to 3 rhumeys. Fibro is NOT an autoimmune. it is just a TITLE" name of a condition that is given bc dr's at the time cant say any other name till further studies are done on a person. In my experiance they told me "FIBRO" bc of the pain issues I had been having. "FIBRO" symptoms are a pre cursor to ANOTHER bottom condition that is def going on. I have several dx's. Myositis (poly) SLE (lupus) , connective tissue disease and sjogrens. SOMETHING is the UNDERLINING cause of the myalgia pain and joint inflammation. FIBRO DOES NOT CAUSE INFLAMMAITON ITSELF. . When they do a SED rate test an its high, that means inflammation an strongly suggest there is something autoimmune going on. this is what I have put together myself all these yrs. and if you have a VIT D b/w done lower levels of D is very common in autoimmune pts. mine was down to a 6. I take mega doses to this day but that just me. I hope this helps. I no some people ACCEPT this dx an doesnt go no further but I have been diggen for yrs and especially this yr has been my sickest. I have been having OVER LAPPING symptoms of true autoimmune symptoms for over 20 yrs. and its taking this long I am 50 this yr it has taken this long to get to the bottom of it. I also have organ involvment. I have been stage 3 kidney disease for at least 5 yrs and NO dr told me about it. I read my online medical records. stay on top of it. keep digging . this other autoimmune diseases are nothing to mess with. they need to treated properly. and BTW you can have NEG b/w an still have them. it take yrs to catch it in the b/w. I am what they call "seronegative". find you a dr that will treat you by your symptoms an not on b/w soley. ...stress will cause flare. my daughter was born with no IgA in her blood she had contracted epstein bar when she was in elementry school an constsnaly with the ear infections and upper resp infections croups that sort of thing, a pediatrition told me she was a PRIME canidate for lupus when she got older. she was dx with migraines and started out the breaking out of rashes at 4 yrs old. it can happen! it can also be hereditary. my aunt and sister both have lupus an scleroderma and sjogrens runs in the family as well. find out your family history. talk to your family an see what immediate family health issues are. I can NOT take the sun or the heat. I lived in TX for 20 yrs an the last several yrs I was there I had the most difficult time I stayed inside all the time. thia yr for me it all came to a head. I had been throwing up an nausea all yr. migrains had increased the shaking my whole insides are messed up. when I walk in the summer heat I am nauseas with in a few minutes and my walk goes down to a creeping baby steps. I instantly get stiff as a board. I hope this helps a lil. keep up your research on more legit web sites. I look at John Hopkins and cleveland clinic mainly and of course the disease itself website. the more "natural" websites you go to they down play others. and I dont like that. a red flag goes up in my mind when I read that stuff. some of the nautral websites are legit an some are bogus. BEWARE!!!!
Yes my pain consultant said that severe emotional trauma/nervous breakdown/severe stress/PTSD etc etc can cause fibro as these events in our lives play havoc on the nervous system and cause damage, resulting in fatigue, pain, sensitivities to weather, medication, poor concentration and mental fatigue/brain fog...........the list goes on............lol
Yes, I agree that you are born with fibro. I said that in my post on page one of this thread. I think if people think back, they were the one with the growing pains or something, my legs would hurt, I bruised easy, my stomach hurt a lot, I didn't do well in the cold or heat. I missed a lot of school. My older sister has fibro too, but hers came on with a flare later in life than mine did. She missed some school but not like I did. She was not as frail as I was and I don't remember her having growing pains, but she started having headaches in high school and nose bleeds. When she worked in her first factory job, I remember my mom complaining that my sister had "missed work again." It seemed like she missed a lot of work from that job when she had worked non-stop in her jobs before that. Her symptoms are coming on later than mine did. My son has fibro too. He's 16, diagnosed at 14. I seem to remember he had growing pains too. My sister and I am worried about my niece, my sister's daughter. She's 19, she had growing pains as well and now she seems to be tired a lot and doesn't seem to know why.
I agree that stress and possibly viruses increase the symptoms or bring them out, but everyone has stress and gets a virus now and then. Everyone doesn't get fibro. The stress/viruses have to be interacting with some make up in our bodies or something, or else everyone would have fibro. And I have never been diagnosed with a major virus. I have gotten the flu, colds and chicken pox. None of the other viruses talked about on here. There has never been one link in all fibromites discovered yet.
I responded earlier on this question an I wanted to reassure that "my" comment of me diggen into this disease has been going on for yrs for me and I wanted to make sure you knew that my purpose is NOT to step on anyones toes or down play this "BEAST" of a disease. I KNOW its REAL bc I have lived with it for 25 yrs maybe longer. I am just saying for "ME" I wasnt just accepting this dx. not when I finally heard that it much much more then this. I have lived with CFS ever since this journey of finding out an getting to the bottom of it has been going on. I have lived with the insomnia and I dont just have the insomnia I have other major symptoms going on that I was also dx having PTSD and Major Deppressive DIsorder. I have had CT scans after CT scans Ultra sounds MRI's you name it I have had it over an over an over. I feel for "EVERYONE" "SUFFERING" from this disorder or disease. but I encourage you or anyone else reading this to really look into BIGGER issues bc there are several ILLNESSES that overlap an have the same symptoms. alot of them MIMIC fibro and lupus. I just felt like I needed to add this comment I got thinking about it and I didnt want anyone to be upset bc I KNOW how y'all are feeling with this! I have sooo many dx an SEVERE FIBRO is one of them. have a good evening fibro friends...:)
I didn't get upset or anything. Everyone has to do their own thing on this journey. I have had a dx for over 10 years. I think I was born this way and stress and trauma has increase the symptoms and flares as I go. I did accept the dx when I got it. I was relieved that I had a name to everything I was going through. Then I started researching it. I thought with a dx I could do something about it. But the web is full of contradictory info on fibro. There are all kinds of miracle cures out there. I gave up on searching for them years ago because I didn't have the energy or money to waste. I tried one thing after another and nothing worked. I even read that someone ate dark chocolate everyday and their pain went away. This was years ago. Of course I tried that, but it didn't help. Only gained weight. I just quit trying. Some might have the energy to fight and some might not. That is one hard thing about fibro, having the energy to fight to get better when it seems like the medical community fights against us and others just want to get rich from us. I came back to the web a few months ago because I felt like I was about to flare again. The last one put me on leave without pay for 7 months and I can't go back to where I was then. I have to try something. I started taking my vitamins again, drinking water, gave up sodas, reading newer research...I'm hoping that I am on to something this time.
I think I might not be getting enough oxygen into my cells. I work full time. I call in almost once a week. A few weeks ago my daughter's car broke down. We had to mess with that after work. The next day, I called in sick because I just couldn't get out of bed. Well, I started taking OXY E cellular oxygen enhancer about a week ago. There are other ways to get oxygen into your cells, some less effective and some more effective, but this is the route I chose to go. Thursday night after a full day of work, hubby and I went to the mall and bought a new bed. (Can't wait to get it, sleep number come to momma!) Anyway, that was a feat going to the mall after work. Then, Friday, I went to work. Another big feat after going out on a weeknight. But when we got the bed they said they would set it up so all the bells and whistles worked right. OH CRAP! I am guessing that every full time working fibromite is none too proud of there untidy house. We have lived in this house for 2 years and I had yet to strip the boarder from the bedroom and paint it and I wanted that done before a new bed was set up. So Friday night we went and picked out paint. Sat, hubby striped the boarded, I cleaned around him, and started painting. Sun, he finished the boarder and I finished painting. Today was a holiday, so no work. I went to 10 different stores and picked out a dresser as hubby had plastic bends, making due until I redid the bedroom. I did all of this and no flare. I feel OK. I hope this holds out.
Hi KJ,
Talking about the oxygen pills, my best friend has MS and asthma, and takes something like this, if not the same thing, and swears to have more energy, and less down time, even though fatigue from MS is her biggest enemy!
I just read Linda's discussion about seeing a high profile Doctor and her breath was also checked. May be something to it. Seems as though Fibro is so multi-system, it's hard to get a grip on anything, but this could certainly be a huge part of this!
Please let us know about your progress with it! Congrats on the new bed, I've heard good things about them! Aren't you proud of yourself, getting the bedroom finished and more agreeable to relaxation!
They sound like positive steps to me!
Hugs,
SK
The oxygen comes in the form of liquid that you put drops into 8 oz of purified water. I will update in a few weeks. I have taken stuff that helped for a few days and then stopped. So we'll see. I started my son on it today to see if it helps him.
About the bed, thank you. I am so excited. Hubby has wanted one for years and I have made him wait. This year I said, let's just get it for each other for Christmas. They had a Veterans Day sale. And I don't like to fight the crowds after Thanksgiving, so we did it. We went with a lower level model and got the massage feature. Hoping it helps me get better sleep. The mattress we have now is 18 years old and starting to hurt hubby's hips.
Mine came about after a year in and out of the hospital and having to give up a profession I loved. My body was just totally inbalanced all the time.
oh WOW! you no I have felt like I dont get enuff oxygen either an I dont know what to do about it. Ill have to look into that. I have no stamina or endurance at all. it has just left! I know how ya feel :) maybe that enhancer will be the bullet for ya. I know what you mean about all the info out there conterdicting . I dont know what to believe either any more. hang in there! :)
I was a sickly child - and was never too great in sports. i would tire out easily and would be punished for complaining about pain so much. I was told even as 7 or 8 year old that I was just making up excuses to get out of work. I would have mood swings even that young and has always had bad vaginal itching. My skin has been dry ever since I can remember and my feet would crack easily - no amount of foot creams would make it petal soft. I always had headaches and symptoms of ibs. But excruciating and crippling pain started when I was 17. I remember that I was down with pain before an important "make it or break it" examination. And then - I haven't had a painless moment in nearly 21 years. I have been told that I should see one of these "healers" who can help me emotionally break the pain cycle. But fibro isn't just about pain - how does one explain chapped feet, constant hunger, no allergic rhinitis, constant skin itching, intolerance to temperature variations, mood swings, fatigue etc etc..?
I don't think it is caused only with physical or emotional trauma. There must be something in the body that causes fibro - and it flares up more during stressful times.
Whatever it is - unless we know the reason - we can't find a solution. Current medications treat the symptoms more than the disease, anyway.
have you had a complete blood work up for any autoimmune diseases? You just mentioned everything I went thru an still is. My "dryness" in my sinusis , my mouth inside is bone dry, I itch from head to toe , heels stay cracked I get a pedi at least once a month I have to to keep them from getting really split , vaginal dryness is bad, I have had 2 teeth broken this yr an my eyes are burning, itchy go from watery to total dryness. I went to the eye dr this past wk and my pulmonologists bc of chest pains an chronic dry cough and both dr's before I even mentioned sjogrens said it was sjogrens. I have a bad intolerance to heat an cold. I also have raynauds in my hands. my bones hurt soo bad! I also crave "carbs" all the time. when I was in high school in the 10th grade I started eating double portions at lunch from the cafeteria. I couldnt get enuff to eat yet I weighed less the 110 pds. not now!! I have a weight issue. I can not lose weight to save my life. this yr I have thrown up all yr nauseated an lost appetite. I cringe at the thought of having to guess what to fix for meals. if you havnt chkd into an immunologists I encourage you to do so. my dr that gives me my biodentical hormones is referring me to one. since I have been to 3 rhumeys this yr. an if you do get b/w an IF it does come back neg, it doesnt mean you dont have an autoimmune. it takes yrs for antibodies to catch up with the symptoms. thats my input dear :)
Gigi
Thanks a lot for your very informative reply. I was utterly puzzled by terrible bouts of nausea that started before the fibro and I see you experienced the same. In my case ( I am 53) it happened exactly as you described. All the dr's could pick up in the beginning stages was a rising ferritin count. The Dr and google confirmed that high ferritin is an infection marker. I had a misterious infection that went up and up. At the time dr's could not find anything and told me it's in my head. Fibro only hit full blown about 5 years later after I was treated with cortizone. Cortizone lowers your immune response and I now regard it as a poison. Dr's then diagnozed Lupus, Epstein barr and later only came the fibro. So my own theory is also that a virus or something triggers an infection that triggers fibro, but as many others in this discussion rightly says, there must also be a genetic defect or something because a lot of people get virusses, infections but no fibro. Did you ever in your research came across the marshall protocol? It's a group of people that firmly believe that a bacteria causes fibro. I think they over rate their treatment plan and possibly over simplify the treatment, but it remains interesting.
KJ
Thanks for sharing. I just recently was told by a friend to check out the oxygen prescription on youtube. I eventually bought the book - very interesting. If fibro is caused in some way by a bug, or a bug perhaps aggrivates fibro directly or indirectly, it looks like oxygen might help. If anyone is interested, I also came across a book called from fatiqued to fantastic. It is an e-book, I scanned through it and perhaps there is a few things to try. If I can muster the energy, I might try to read it through. Can you perhaps give me more detail on the oxygen you are using. I stay in South Africa and would like to find out if there is anything similar here. regards.
kelly
I fully agree - I learnt more about fibro in this forum in a short time, than hours of research on the net, just by reading everybody's experience and stories and comparing it with your own.
Hi LF,
I see this is just as aggrivating to you as it is to me. 20 plus yrs ago is when the so called Fibro hit me. back then the dr's I went to I dont "autoimmune" wasnt really thought much about. I lived in Houston for 20 yrs an my x worked in a chemical plant an I washed his clothes for 20 yrs. He worked in a chemical plant that made the PVC that goes into plastic. I have done the research on this PVC and it causes autoimmune diseases. I firmly believe that my exposure to that along with the 100's of chemical plants in Pasadena for which I only lived about 3 miles away from the 225 freewy all them yrs them chemicals were released in the atmosphere an still does I really think I have had the reaction to these poisons all them yrs. I have had the sun sensitivy for about 15 yrs but this yr has been the worst. I have had an issue of nauseated an vomiting for many yrs but this yr it was non stop nausea an vomiting. I am now having to take zofran to control it. an now when I spend any amount of time in the heat I instantly get ill feeling. stiff as a board an body an face rash now. I have NOT read about the marshall protocol. I will def look into that. thats what I mean about some of these studies out there. there are "alternative" dr's who down play conventional I dont agree that EVERYTHING happens from JUST bacteria and fungisis. my sister goes to an alternative dr an we differ greatly on opinion on this so we dont talk about it. she treats one way an I treat another way. I do however use mega doses of Vt D 3 an D2 I get around 160,000iu's a wk on it. an I also use turmeric for inflammation. I still have alot of other symptoms I cant fix. an the stage 3 kidney really bothers mentally. I do believe the sjogrens is to blame on the kidneys. I am trying my best an its a struggle to get a referral into a nephrologists. I am now working on 4th rhumey in annother city an I am going to get into an immunologists. I hope you get some where with some answers also bc if it is autoimmune your dealing with like me I want it slowed down. I dont want it to advance any faster then what its doing. best wishes.
Hi I went on the "Marshall Protocol" it did nothing for me or my friend who started it first .That does not mean it will not work for someone else , I guess : ) Who knows we both have autoimmune problems and Epstein Virus and were on anti biotics for months and months , but got 0 results . I like everyone else on this site believe it is all intertwined , but have not a clue how . Best wishes to everyone who is battling these illnesses along with any others . My prays go out to you all !!