Would like to introduce myself... and get some feedback...

Discussion in 'Fibromyalgia Main Forum' started by deanbeans, Aug 20, 2003.

  1. deanbeans

    deanbeans New Member

    Hi all;

    I am new here today and would like to get some feedback... For one, I am sick & tired of being sick & tired...

    I have not had a proper dx with Fibromyalgia, tho'I had a Dr tell me about 14 years ago that I have CFS... I have not been to a rheumatologist - due to extreme dr shortages where I live & a 2 year wait to get in to see the one dr who can dx me proper... I suspect I am dealing with Fibromyalgia, unless they are one & the same.

    Today I woke up at 1 pm, and it hurt to move. (I think today is my worst day ever with this) My back feels like it has been stomped on pretty good. My calves feel bruised, but there's nothing there. I have the shakes & the edges of my hands, wrists & arms are burning. My hands are numb & tingling. I keep having to backspace here 'cause I am making so many mistakes. A couple of days ago my back had a pretty bad burn. I also get it on my thighs, calves, shoulders & upper arms. You cannot visibly see the burn (no redness) but it is very sore to touch & I cannot stand anyone touching me when I am like this.

    I have been seeing a chiropractor for about 5 years now & he helps alot. I will only allow the gentle maneuvers with the activator technique. I do not trust a chiropractor who wrenches a persons body (what if he's out a bit, or pulls too hard... too many variables to consider there, like how relaxed one may or may not be) but it's only my opinion & if some of you have had success being wrenched - then great!

    I would like to know if there is anyone else here whose symptoms began after a vaccine, as mine did? I got violently ill, and had to crawl to feed my two children who were very small then. Then the food sensitivities kicked in & the horrible pain & fatigue wouldn't quit. Some days it's all I can do to raise my arms over my head to fix my hair. I will not go upstairs unless I have to & will plan trips up, setting items on the stairs until I have an armload. My house is usually a disorganized mess & I am embarrassed to have people in like this. When I do manage to get it cleaned up, I have to quick, quick - invite someone over!! (Being by nature - a social butterfly)

    I noticed that alot of you have the same complaint - brain fog, as I do... I am a writer, and there are sometimes weeks where I won't type a word... good thing noone has employed me to write... I'd not be too reliable... (I haven't yet had time to read all the posts, but will get back to read as many as I can to learn more.)

    I am 39, and feel most of the time, like I am 70. I am fed up with living like this... cannot afford alot of the supplements promoted for this illness, so that does not help. I eat the best way I possibly can, (whole foods as much as possible) mostly organic produce & some organic chicken or turkey. If anyone can think of some simple supplements or even simply certain foods that can help please post them here...

    I've tried exercise & cannot seem to stick to the routine. I get into it, then have a bad bout & can't get back to it...

    I'm sure most of you can relate...

    Thanks for what appears to be a great place to share!

    deanbeans
  2. klutzo

    klutzo New Member

    It sure sounds like you have FMS. Two things in your post jumped out at me.
    1. Don't lose any sleep over not being able to get in to see a Rheumy...they can't help you anyway. Get yourself a holistic doctor and save yourself a lot of wasted time, money and humiliation. Most holistic doctors are becoming FMS specialists these days just by default, since so many FMS/CFS patients are going to them in despair after conventional medicine fails them.
    2. Having symptoms that began after a vaccine would make me run to a holistic doctor to get a PCR (polymearase chain reaction) test for possible mycoplasma infection. If you don't know much about this, please do a websearch on it and also go to the top o the page here where it says "message search" and type in mycoplasma, and you will get hours of reading from our past discussions on this subject.
    One of our Moderaters here, Mikie, has mycoplasma, and I hope she will see your post and comment on this.
    Magnesium and B-complex and digestive enzymes are 3 supps. I consider essential and they are not expensive. Exercise, even if it is only a one block walk, is also essential, but take it slow and be good to yourself.
    Klutzo
  3. keeponsmiling

    keeponsmiling New Member

    I don't have FM, but I do have CFS. I agree that you need to find a holistic/alternative medicine doctor. You can even find them in the yellow pages. LOL

    I'm also a writer! And I understand completely about the "brain fog" that keeps you from writing from weeks on end. I've been working on my first novel for 18 months now. I know exactly how I want the story to go, each chapter is outlined, I know the climax, the ending, everything... but I can't seem to get it done.

    But I'm not giving up! I WILL get this #$%@ thing finished! LOL

    Hope you're feeling better soon, and hope you find a doc who can help. :)

    Cheryll
  4. Mikie

    Mikie Moderator

    Welcome to the board.

    I didn't get mycoplasma infection from a vaccine, but I lived right next to a military installation where soldiers were getting vaccinated just prior to being deployed to the Gulf War in 1990. I got sick Christmas Eve and it took months before I wasn't crippled from the flu-like illness which hit me like a ton o bricks. My guess is that I got it from a soldier who had an active infection from a contaminated vaccine who was out in the Christmas shopping crowds. I believe what I have is Gulf War Illness which I also believe is CFIDS, same thing.

    My infection actually showed up in a regular blood test, but at the time, the docs didn't know that one or two cycles of ABX would not clear it up. If we were to find it in a test now, it would require a PCR DNA test because the infection has gone stealth and would not show up on regular tests.

    Since my doc and I know it was a mycoplasma which triggeed my illnesses, I also have FMS, we didn't do the tests but put me right on the Doxycycline. I have been on the Doxy about a year and a half to two years now. I should keep better track. I am doing so much better, but it takes a long time.

    Good luck to you. You've come to the right place.

    Love, Mikie
  5. deanbeans

    deanbeans New Member

    That there are others like me who are also suffering; you know, misery loves company... lol!!!

    Thanks Klutzo, Cheryl & Mikie - I will address you all here & appreciate all your feedback. I had to go out for a couple of hours & am hurting even more now. I was around a large group of friends & all noticed me nearly falling over & limping. I am usually able to hide it better than this - I just tell my friends not to hug me quite so hard & they get it. But tonight I guess I couldn't even come close to hiding my misery... My hip is also giving out on me... what the???

    I seriously think that there is now something more going on with me. I feel like such a hypochondriach... though I am far from it... I cannot stand to even be near Dr's & don't want to hear from people, Oh go see a Dr... they have been little help to me & mine in the past... so I keep pretty quiet about my physical ailments.

    How about this list of ailments & I swear I am not into outdoing anyone... I still haven't had a moment to read over the other posts, so I don't know what our common denominators are here...

    HOWEVER, here goes...

    Vision impairment (my eye specialist says I am an enigma - he cannot figure out why my vision is failing so rapidly.) I am now legally blind in my left eye. He says it SEEMS like some kind of virus has attacked my eye, but WHAT?? No answers there... Have had many tests that proved nothing. Should I get a second opinion on that??

    IBS... Don't dare change my routine... I'll be goofed up for days...

    Sleep disturbance. I used to wonder why the heck EVERY little noise woke me up?? And to further complicate that, dh insisted on moving snuffling (loud dreaming) puppy into our room... I have been told my instant wide awake from the slightest noise is likely due to the fact that I don't reach the REM stage?? It's not apnea, I don't think - I am almost underweight... My sister has many of the same symptoms as I and has gone for several sleep studies... which incidentally proved nothing. One Dr said she had apnea & she had to wear a horrible oxygen mask for about 9 months. She felt no better & had another study... which resulted in the getting rid of the mask. They concluded that sis' does NOT reach the REM stage, but not due to oxygen levels dropping... the whole thing just sounds so wierd... I'm not so sure I want the bother of a sleep study. I run an electrostatic ionizer in my room at night now & have my windows painted black to block out ALL light... evidently this helps with the production of melatonin... These two things have made a difference.

    Chronic joint & muscle pain & skin burning... I think I already mentioned that... The burn typically happens after exposure to a chill. Even in the summer if there is a cool breeze my feet had better be covered, or I can predict a burn. Also too much warmth & humidity will do the same.

    Low BP... to the extreme where a Dr once asked me if I was sure I was alive... (he was joking) & I would faint all over when I was expecting my children & still have faint moments. I have learned to STAY AWAY FROM ALL CELERY PRODUCTS!!! They cause blackouts because they rapidly lower my BP... anyone with high BP - eat all you want!!

    Heart pain. Don't know what's up with that, but I have an irregular rhythm. The pain when it happens is often when I am lying on my left side. Sometimes when I am standing or sitting... doesn't seem to be any rhyme or reason to it.

    I mentioned food allergies... I developed a pretty bad reaction to peanut butter; not anaphylaxis, but more of narcolepsy & I wake up vomiting... Also feel better when I stay away from nightshades... (potatoes, tomatoes, eggplant, peppers) Too much citrus will set me off.

    Of course the classic brain fog...

    I think that's about it... if I think of any more I will let you know...

    I plan to spend my morning searching mycoplasma & stealth virus.. I had heard some mention of stealth a few years ago in one of my vaccine groups, but never associated it with Fibro & CFS... so thanks for that info... I just might get somewhere...

    Take care & g'nite!

    DB
    [This Message was Edited on 08/20/2003]
  6. kjan9

    kjan9 New Member

    I am new here to. Also I am a 39 ( oops 40th bd yesterday but don't tell no one!). The vision trouble I mainly experience is double vision. I've lived with being legally blind in my right eye since age 4. I have cfs and fibro. started in 1993 while I was carring my second child. Athough all of there same unfortunate symtoms occured several years prior to that, so tests were done then but cfs was considered the yuppie disease then. Here I am rambling. It sounds like we have a lot in common. Including past luck with docs. Mostly my problem lately is procrastination when it comes to going in to see anyone, but deep inside I just feel it will be a waste of my precious energy, but soon, very soon, this week I will go in!! Face the music no matter what the sound. Thanks for listening. The stealth virus, you mentioned, I had blood work done and sent to Dr. Martin in L.A. Turned out all of my immediate family was positive for it. Is this the same disease your refering to? Oh, I also have low blood pressure. But I've been gaining weight.UUGGHH. ONe doctor gave me a web site to do an eye test online. cfs related. unfortunatley I lost all the info before I got to a computer. Now I can't get thru to the doctor! He's a very busy infetious disease specialist. I think I'll make it my mission to get that info this week. Did'nt mean for this to turn into a chat. Hope you have a better week.
  7. MsBella

    MsBella New Member

    Three newbies, all the same age, 39-going-on-40, and writers. With brain fog.

    So glad to know I'm not the only one staring at my computer screen in frustration! Fibro doesn't give me writer's block so much as make me space out on what I'm trying to express. Frustrates the heck out of me! I often come across documents in Word that catch my attention, only to find that the snippet of story or description was ended in the middle of a sentence, and I have no idea what I was trying to say or where I was going with it. Quite often I don't even remember writing the snippet to begin with!

    I love writing, but looking back at stories written before fibro started causing serious cognitive impairment often makes me cry, because I don't know if I'll ever be able to work at that high level again.

    I'd love to talk about how to adjust to writing with Fibro. I should probably start a thread on this, because I'm not answering your original question. But I just realized how late it is and I absolutely should be in bed!
  8. tnnanatx

    tnnanatx New Member

    welcome aboard you've found a great place for information. People here are great. Welcome

    Trudi
  9. deanbeans

    deanbeans New Member

    Hi kjan, msbella & trudi!! (the smiley face was SUPPOSED TO BE A CAKE!!! so I tried to edit to get the cake... sorry, I hope your dh got you a cake!)

    Well, fellow writers all suffering together... is this a coincedince?? All in the same age group... hmmmm... life is strange!

    Don't worry about turning this into chat... what's it for otherwise? And chat is just way too fast for me. I simply cannot keep up!

    I forgot that i also have RLS... bugged the heck out of me last night.

    Poor circulation is another - it was hotter than hades here last night & my left leg & foot were ice cold.

    kjan, you said that your symptoms began when you were pregnant. Did you happen to have the Rhogam shot while expecting? The reason I ask is that this vaccine has (or had) outrageous amounts of thimerosal - it was something like 30 times the normal amount in vaccines... in order that the vaccine will cross the placental barrier to 'save' the baby. It's a totally non-essential vaccine as far as I am concerned. Baby's cord blood can be tested during birth & the situation can be dealt with from there IF need be. I had a Dr scare the crap out of me with my 2nd child & he told me I'd better have the vaccine or she or I or both of us would die. Who wants that?? So I took the vaccine. I was young & naive & my daughter has a severe jaw & tooth deformity that will cause her much discomfort for the rest of her life. She is very beautiful in spite of it, but is very self conscious when smiling. The risk was simply not worth it. Knowing what I know today, I'd never have allowed it. My youngest was born at home with two midwives & the Rh factor was dealt with - the cord blood was tested & both myself & my youngest child were fine - without the Rhogam vaccine!

    I mentioned to my husband last night that I would like to look into a disability pension. I am in no shape to work - at least not now. He says no way! But our finances are a mess... so I think he's too proud for this?? He also thinks I should be able to cure it by eating some wonder diet... I have tried pretty much everything & only seem to barely 'manage' the pain.

    I also noticed kjan, that you also love antiques... (I looked up your profile) would you believe Antiques Roadshow is my favorite show??? I collect antiques (WHEN WE CAN AFFORD IT!) I have heard some of the nasty stories surrounding the show, but I cannot help myself - I love to look at the 'junk' people have stuffed away in their attics... I'm also an avid antique book collector. God is my Savior too & without him I don't think I could make it through this. I am not a big time Bible thumper... it's a personal choice & I don't think He will not redeem my soul if I don't stand on street corners with pamphlets...

    msbella - what a cool name... I have an abandoned cat. We named her Bella & her n/n is Ms. Itsy Bitsy! And here you are msbella... neat! As for the notes you find in word - I am really bad too. I leave code words on slips of paper - toilet paper even - that the rest of my family here has figured out not to discard them. They are constantly asking me if these little slips are important to me. Hell yeah!! That one word on a slip could have an entire chapter behind it! (Now if only I could remember??)

    Trudi, thanks for the encouragement - finally I have a place to go with all this... I feel like I am home... so thank-you for making me comfortable sharing with you all!

    ttfn!

    DB



    [This Message was Edited on 08/21/2003]
  10. klutzo

    klutzo New Member

    Thinking you surely must have something else....something more serious, is a common problem for new people. It all sounds like Fibro to me! Fibro IS more serious...we just can't seem to convince most conventional doctors of that. You will be taken seriously by holistic docs, however.

    You need to read up on Adrenal Fatigue! You sound like you have a classic case. This can be treated! Many of the symptoms of Fibro can be treated by alternative medicine.

    Klutzo
  11. deanbeans

    deanbeans New Member

    To both of you. I apologize for not responding to those who reply individually - I barely have the brain power to reply at all.

    This has been a most horrible time for me... In 15 years I have not felt this bad... going through some major stress right now. Is stress a factor as far as triggers go? I just feel like EVERYTHING hurts. My mom-in-law called a while ago & as soon as I heard her voice I broke down. I don't usually do that with anyone - esp her. She has enough to worry about without hearing about mine too. My father-in-law has an abdominal aortic aneurism which will be needing repair at some point. Dr's are wanting to go in now, but he's being stubborn. So as I said she has enough to worry about.

    I walked 30 seconds to the mail box today & came back in the house - so fatigued I literally fell into a chair. A 20 step walk to the bathroom & I am exhausted. I'm doing my dishes in chunks. Little bit here, bit there. Laundry?? Jeepers, I got a mountain of it! AND I still have to make dinner!! I'm sorry - I sound like I am whining here...

    Adrenal failure? Could that be something to do with the horrible pain in the kidneys? Something else to look up.

    )))))))sigh....((((((((( Thanks, at least reading your posts does give me SOME ray of hope...

    Gotta make an attempt at dinner - forgot to defrost the chicken...

    Will peek back in later.

    Ciao' for now,

    DB
  12. kjan9

    kjan9 New Member

    Just a note to hi and hope your week-end was better. No I'm not rh. But some believe the polio vaccine is responsible. Stealth Virus studies by Dr. Martin. Pretty scarry research.I try not to focus on anymore. I think I mentioned some of that before. It's really late so I'll close for now HANG IN THERE!!
  13. Mikie

    Mikie Moderator

    I did a search on mycoplasmas and got three articles. I did a search on Nicolson and go twenty one articles. Dr. Garth Nicolson is the one who discovered the high rate of chronic stealth mycoplasma infections in people with our illnesses.

    Love, Mikie
  14. deanbeans

    deanbeans New Member

    (here's you're cake... now that I have mastered these icons...;o)

    I will check out the library as soon as I can stay awake long enoght to absorb... no sleep - I swear not a wink last night... had the alarm set for 6:30 this a.m; gave up at 6 & got up... been going on steam all day. Saw my chiropractor - he was encouraged that I have improved from how I was last time I saw him... right around the time of my last frustrating posts here. He actually wondered if I had West Nile when I went to see him last Friday. I was just so sick then. But have improved since then... so no West Nile... thank heavens... what next, I'd be thinking???

    Still seem to have a leftover pull in one of my ankles - feels like it's been twisted, but no I did not twist it, so wonder what's up with that?

    Well, I'm heading off to bed - surely the Lord will bless my sleep tonight... AMEN!!

    Take care,

    Luv DB
  15. jkd7058

    jkd7058 New Member

    Just last week I went to a really great presentation by two chiropractors. They broke down what they believe are the various "triggers" to FM and one is recent vaccinations.

    They explained that there appears to be numerous ways people get FM (cervical trama, stress, genetics, toxcicity, immune or viral infections, vaccinations - I think that's the ones they covered). They went on to explain that no matter which way it started - it's kept going in a great part by stress (fight or flight) They said to think of having FM as once the pain and other stress starts the stmpathetic nervous system reacts as if a "tiger has you by the neck and is dragging you off into the woods". They then went on to explain what happens to you body when the "tiger" wont let go - for weeks, months, years. Your body starts shutting down anything that is not completely necessary for survival. When a "tiger" is dragging you through the forest, you're body is not in a "let me lay down and get a good nights sleep mode". The entire presentation made so much sense.

    They are part of a group called Fibromyalgia Coalition International. They are trying to compile a group of healthcare professionals to work "TOGETHER" to help FM suffers. They have medical doctors, physical therapists, massage therapists, - they also provide Employment
    assistance through ADA laws and Leagal/Disability assistance.

    I'm going for my first visit on Thrusday. I'll give you an update later.
  16. paulalbert

    paulalbert New Member

    Deanbeans,

    For what it's worth my naturopath says a chiropractor is the ideal specialist for someone who has brain fog. "Have him check the atlas and axis along with the seventh vertebrate."... I know you're concerned but if you get decapitated, you have an outstanding lawsuit on your hands.

    Paul
  17. deanbeans

    deanbeans New Member

    Hi Bmari & Paul...

    I always try to address whomever replies in one post - it's easier for me.

    First, Bmari, it almost sounds like you may have some sciatic pain, which I have also experienced. Not certain it's FM related... Now with the eyes, I am hearing more & more eye complaints from people in this forum. Have a look in one of the posts that are specific to eye troubles - I hope you'll find out more there. I also know that - for sure, eye troubles can be an indicator of thyroid illness. You may want to look into that also to rule it out. I still have to go back & double check on that since I discovered the test I was given for thyroid has proven to not be very accurate. So there is another test I will request - not sure now what it's called. I need to ask my sister, since she has thyroid illness & tested negative too, until the proper test was done.

    As for your comment about chiropractics Paul, I am not sure I understand what you are saying (perhaps DUE to brain fog??) or are you saying that my chiropractor is taking advantage of my having brain fog & able to turn me into a cash cow? Perhaps you can clarify that for me... I can tell you though, I have seen my chiropractor for different things over the last 5 years due to trauma from car accidents I had been in when I was much younger (& much stupider...) - now began seeing him on a more regular basis due to another car accident in May... wrong place at the wrong time as a passenger (for all 4 accidents) I know he has helped me tremendously as far as helping manage my pain & treated my carpal tunnel successfully. My little daughter was injured (she wrenced her neck) in a fall & could not move for many hours, until we took her in to him. She was able to move again within the hour after seeing him. It was seeing how quickly chiropractics worked for her, that got me interested in going also. He does NOT use the wrenching method that most chiropractors use, but rather uses the activator method. Safe, very accurate & very gentle.

    I'm off to bed!

    DB