Can't I just have FM?

Discussion in 'Fibromyalgia Main Forum' started by dragon06, Aug 22, 2008.

  1. dragon06

    dragon06 New Member

    Ok this is going to come off as kind of a rant and well I guess it is one.

    I have had FM (and CFS) since I was about 3 years old. I have been tested for many many things over my entire life, way too many to list them all here.

    So here is my beef...

    I have noticed lately (and maybe not so lately) that people are always suggesting that FM might be something else. Like get tested for Lyme or that it might be a vitamin D deficiency, or that you might have Lupus or MS and so on and so forth. (I don't mean to single out illnesses or posts here I am just trying to give an example)

    It's just that I have had FM for 30 years and my Mom the same and we have FM. (I also have some other conditions but they are not related to my FM). So why do we need to keep getting repeatedly tested for things we have already come up negative for?

    FM is a real disease and therefore some of us must just have FM and I believe that I am one of those people.

    I am on a treatment plan that keeps me stable, not cured and not perfect (and I still can't work) but stable enough to have an ok life.

    I just want to deal with my illness instead of chasing other things that "might" be wrong with me that I have already received negative tests for.

    Sorry about the rant...I just want someone...especially on the FM board to understand how I feel and just help me accept what I have. I don't want to be searching for the rest of my life...I believe I have already been given my DX and that it is correct.
    [This Message was Edited on 08/22/2008]
  2. erinwilburn

    erinwilburn New Member

    I have not suffered my whole life but I want to be able to find peace. Sorry if I sound foggy. With all the pain I have everyday my main goal is peace of mind, to find joy in what I can do instead of grief about what I can't.

    For me, I know that no matter how many tests i may have or Dr.s I may see, that peace of mind has to come from within.

    I do understand why so many search for something more,a diffrent dx, something with a known cure. No one wants to face the reality that life may never be the same. I still read all the research and study new info but I also know that I have FM and even if along the way I add a new name to it I still feel FM was the correct dx for me.

    It is definatley a personal choice. one that for me came with help from my therapist and family. i still strugle and am off my rocker some days but I can still laugh and joke and play with in the physical limits I have been given.

    I agree with you. I have FM it is real. I am not going to blindly go through life but I am also not going to spend my life searching for a way out. It is like my hubby, he is blind, now we could spend our time looking for a cure or transplant ect. But he has chossen to make it his life goal to let everyone know that blindness is not going to stop him from being happy. I remember reading a post once about the difrence between "happy and "healthy", I chose happy.

    I know I rambled and I am sorry but thank you fro bringing up a great point!
  3. dragon06

    dragon06 New Member

    My condition does seem to get worse as times goes on but every time it changes then we change our approach and get stable again for however long it will last.

    I have been tested for Lyme though and it has come back negative. I did not grow up anywhere that had ticks with Lyme and neither did my mom. We have both been tested for Lyme. I have had this since I was 3.

    I do know that some people will have Lyme or whatever other illness, that just makes sense, but I know that is not me.
  4. wanderingbluedragon

    wanderingbluedragon New Member

    I understand. I have been tested for all kinds of things. I think that in a way, it is the inability to accept that this is what we have and hoping for an answer that's curable or that receives more validation that drives people to look for another answer. For some, it turns out to be something different.

    There are days I think that if this is going to be the rest of my life, then i don't want any part of it. It's thinking like that that keeps me hoping that a better treatment or cure comes forward.

    I too have other things wrong with me that I know can be treated to a point. At a certain point though even those problems will become untreatable.

    For some people it is a way of being proactive about finding the reason we have this and hopefully a cure some day.

    I understand how you feel and I agree. I have FM and CFS and that's what it is, take it or leave it.

    I don't feel an overwhelming urge to be poked or prodded any more than I all ready have. I just want to live out the life I have in relative peace.

    As for dealing with FM/CFS. It's what we come here for, correct? So that we can talk to others who know what we are going through because no one who does not live with this understands.

    I would love to say that I have some great insight to coping. In all reality it is a day to day thing. I take each day as it comes and deal with whatever pain or problems I'm having that day. I have found that moving to a very dry warm climate has helped me immensly in the pain dept. All though I caught a bug that I just can't seem to shake lately, but this is typical.

    I just expect if I get sick, it's gonna be worse than people who don't have FM/CFS and Chronic Epstein Barr. This past year I have had shingles 3 times. twice on my face, once in my eye.

    I got through it and I left my job so I could at least do a little around the house and spend time with my kids. It was the best decision I have made regarding my health. Maybe not so good for my mental status, but I am working on that as well.

    What works for you?

    [This Message was Edited on 08/23/2008]
  5. Janalynn

    Janalynn New Member

    Yes you can "just" have FM - I just have "FM". Although saying 'just' seems funny since having that alone is enough if you ask me!
    I understand where you're coming from.
    I've been tested for many things. FM is my diagnosis. Maybe someday something else will show up, but now that is what I've got and what I'm dealing with.
    I appreciate people suggesting checking other possibilities out, no problem with that. Sometimes though it's true, we've checked other things out and when "all is well" there, we're still left with this FMS diagnosis.

    It's hard enough to deal with this, to get others to believe in it - I agree this in itself IS REAL.

    So to answer your question. Yes and I am one that is right along side of you.
  6. lsaxton65

    lsaxton65 New Member

    i'm sure in the western medicine practice you can have just "FM".

    or that's how i used to think, but i became very frustrated with having to adjust my function of life because of worsening symptoms, which have left me pretty much without a life.

    i then started changing my way of thinking, which changed my attitude, even though my thinking was fogging and exhausting. i have FM/CFS!!!!! there's no denying that!

    but,for all of you FM/CFS'ers, these 2 dx are nothing more than a syndrome. that's why they are called fibromyalgia syndrome and chronic fatigue syndrome.

    did your doctors not explain what a syndrome is? it is a group of symptoms that have no known cause. i believe there is a known cause...the doctors just don't want to spend a large amount of their time finding it.

    there are so many KNOWN illnesses that cause fm/cfs.

    i'm one of the people who refuse to accept fm/cfs as my only diagnoses because I BELIEVE THERE IS A REASON FOR ALL OF THESE INCREASING SYMPTOMS and i want to know what it is!!!!!!!

    i don't care what it takes to get to the bottom of all of this. if i have to be like others and go through an array of drs and tests and needles...then i will do it because i am 43 and i still have alot of life to live.

    i want to be the best mother and grandmother that i can and i can't do that from a bed...i refuse to live life in my bed.

    so i'm not saying my diagnosis in incorrect and i'm not looking for another diagnosis...i'm on a mission to find the cause unlike most drs
  7. lsaxton65

    lsaxton65 New Member

    that's the problem i am running into "i don't live in an area that has lyme"

    the CDC needs to do away with that because people from these lyme areas travel to areas that don't have it...they bring their pets...they don't even have to bring their pets, parasites can in their luggage. i have traveled in lyme areas, lived in one areas in my 20,s and was bitten by a tick there. lyme can travel by so many means and spread quickly.

    it's hard to even bring up lyme to a dr that isn't in a lyme area...they won't even discuss it prob'ly because they don't know much about it

    people are suffering because of these statistics of"lyme areas".

    it's so sad!!

  8. gapsych

    gapsych New Member

    Dragon06, good for you for bringing up this controversial subject which has caused so much discourse on this board.

    Pro Health wants the best for us.

    But they can not be here 24/7.

    As Sassy2 said, we should not have to defend our diagnosis nor made to feel like we are stupid and have never considered lyme.

    I think that there are a lot of people on this board who feel the same way but may be intimidated to post.

    We need to hear from them.

    This post is a good start.


    PS. I have made my opinions clear, so will let other's speak up. I'm hoarse. LOL!!!!
  9. lsaxton65

    lsaxton65 New Member

    i'm so sorry if i sounded so opinionated or uncompassionate. i did not mean to imply that fm/cfs doesn't exist...i hope i didn't hurt anyone's feeling.

    it wasn't my intention to imply that fm/cfs was 'all in someone's head'

    the point/idea i was trying to get across was that there are so many diseases and illnesses in which fm and/or cfs are symptoms of these diseases and often people are not informed or made aware of the possibilities.

    i would also like to mention that i used to work in a lab before my health deteriorated and i could not tell you how many times a test would be ran on a specimen in one dept and then several departments, only to have a positive result of cancer or illness show up on 1 out of 6 tests. but had the doctor only ordered 1 or maybe 3 tests (maybe because it was not a test/illness normally ran)then the patient would have been dx wrong

    i'm very sorry for stepping on any toes

  10. justlooking

    justlooking New Member

    You are right on. I think what is most frustrating to people who don't have the other diseases people keep mentioning, is the fact that some people keep trying to INSIST we do and we just don't know it yet.

    Honestly that may be the case and people are just trying to open our eyes to possibilities of other infections causing our symptoms (which is good) but its the manner in which it is presented. It's the "if you just did what I did" you'd get better but you all are too stupid or stubborn to listen. I haven't seen too much of that lately but in the past it would get pretty nasty.

    I don't want that to happen again so it would be nice if everyone could present their theories in a non-judgmental and non-pushy way. I think people are more apt to listen to other ideas when they aren't pushed on you in a threatening and aggressive way. I see people who have other diagnoses on here who are very respectful in their presentation of their stories and others who can be very persistent and righteous, to the point of insulting those who don't share their theories.

    Hope we can all respect each other in our differences and embrace each other in our similarities.

  11. victoria

    victoria New Member

    you're so right. My son was born/raised in Georgia, it ws never considered a possibility... and all his other 'regular' testing was normal. Yet he was totally positive to the CDC requirements for tracking Lyme, 2X, while his bloodwork otherwise continued to show 'normal'. I also know personally quite a few who have had lyme in Georgia, even 16 years ago, complete with bulls-eye rashes even who have never been reported because they never got the WB due to $ problems, etc. As a result, it's considered rare, insurance fights are inevitable usually, not to mention the WB by other labs back then were so unreliable.

    Interestingly, most of these people have ended up with 'autoimmune problems' including CF/FM over time.

    Syphilis, a cousin spirochete of Lyme, btw, was originally to be 'known' to be cured with one shot of penicillin. Likely most were. But there were reports of people 15-20 years later showing back up positive with tertiary syphilis, tho not sure of the stats. Just as there has been a contingency of people with 'post-polio syndrome'.... originally dx'd with CF/FM.

    Lyme AND OTHER STEALTH PATHOGENS are SO much more devious than most of us have been led to believe. (caps are just for emphasis, btw, not yelling...:)

    [This Message was Edited on 08/23/2008]
  12. bunnyfluff

    bunnyfluff Member

    I live in DFW, and every one of us has Lyme in my family.

    There is no "safe" place from Lyme..... only Dr's that don't know better!

  13. Catseye

    Catseye Member

    I don't think fibro is just fibro. I think that's what doctors say because they just don't have protocols in place to detect what it is and/or they don't have treatments because the treatments are not drugs or surgery and they only prescribe drugs and surgery as treatments for diseases.

    If you have fibro or cfs symptoms, then you have to have a cause. It didn't just happen that now you are fatigue, brain fogged and in pain. Since we're all different, we all have different degrees of strength in varying metabolic systems so we can get hurt in different ways by the same thing. That's why lyme, lupus, or whatever example of a cause you want to use gives us different symptoms. CFS and Fibro are just collections of symptoms. I think when people say they didn't have cfs, they had lyme, that's probably not a good way to put it. They had cfs caused by lyme, they didn't have one or the other. Same with fibro.

    There are many factors in these diseases. I learned a lot from And once you have the disease for awhile, then you develop certain other problems, like accumulation of heavy metals, gut dysbiosis (which I think you should probably look into, see my post about comprehensive stool analysis, a regular doctor can't help you with this but mine can), digestive/detoxification problems, CNS problems and endocrine problems. Then it's like an onion and you have to peel awa the different layers of problems in a systematic fashion because they're all tied together. And you do it with supplements. So doctors can't help because they can't use supplements to treat diseases. And that's why they say it's incurable. It may be incurable to the medical profession, but that doesn't mean it's incurable, period. It's perfectly treatable if you find the right expert. I found one and he can help.

    He uses testing to recommend supplements for YOUR particular circumstances of what's happening in YOUR body, that's why it works. Me and a couple of other people have been using him and two of us have compared our stool test and other test results. We have some of the same symptoms, I mean we're cfs and fibro sufferers, but we don't have the same situations going on with our bodies. So her supplement regime is vastly different from mine.

    I did find out I have lyme, but we're not doing any antibiotics for it, we're focusing on the guts and getting detoxification and digestion working again, fixing the gut dysbiosis and chelating heavy metals. This is getting the immune system working again, the heart of which is in the guts, and this is helping me take care of the lyme. I won't be using antibiotics at all. When I first started treatment, it was based on the stool analysis and bloodwork. After the test for lyme, there wasn't any change in the supplements because I was already doing what I needed to do to get the guts and immune system in shape. And my symptoms are falling away one by one.

    Don't believe doctors when they say something isn't curable. It may not be curable in their way of doing things, but there are health experts out there who can cure these things. It's not that well-known because according to the FDA, they aren't allowed to say "I can cure cfs or fibro" even if they can. That's because they are using supplements and no company can do the clinical trials necessary to have any supplements declared as treatments for cfs/fibro. Plus it has to be a very specific protocol, with several different supplements depending on what is happening with you, and that would be like a multi billion dollar complicated clinical trial which will never happen.

    Check out my thread with "comprehensive stool analysis" in the title. And check out to see why the guts can hold you back and keep you sick indefinitely. Sure, you may have developed co-infections over the years, but the gut dysbiosis still has to be fixed. It's made a huge difference in my day.

    good luck

  14. EricaCFIDS

    EricaCFIDS New Member

    Hi Jeerie,

    I agree that medical testing is so fallible (and the doctors too). It can be very frustrating and unsettling.

    I too have Hashimoto's and when I learned that I thought it was my was only the beginning! It's just one piece of the puzzle. I'm not afraid of Hashimoto's anymore. It's the LEAST of my worries! However, I did learn, that it is a "classic" response to lyme and can help lead you to the constellation of symptoms that go with FM/CFS. My hypothyroid went unproperly treated for 9 years and lead to adrenal "burn out", which crashed my immune system. It was all a cascade effect brought on by lyme, that I now know that I have.

    I have been to numerous "experts", the Mayo Clinic and all told me I was fine, but I may have CFS. I have gone 17 years with terrible testing and clueless denigrating MDs and suffered a lot. I have slowly peeled back the layers of what's wrong (vit D deficiency too) until I got to the root of the cause.

    If we left it up to testing and the average doctor, we'd be nowhere! The hardest part is getting them to listen and the second hardest part is them actually knowing how to order tests and read the results!

    Good luck in your path to finding answers! I've found more in the last year than in the previous 16! ( :

    All the best,
  15. dragon06

    dragon06 New Member

    If people can get tested for other ailments and find out they have them and treat them then that is good. If it turns out that this other illness was causing the FM/CFS then even better to get it cleared up.

    However, I am on of the people who has been through ALL the tests more than once. When I was a child I went to EVERY specialist and doctor pretty much in my city, I was a regular at the Children's Hospital and then at the regular Hospital. I have been through it all. I have had some other issues but none that could have "caused" my FM. Hell I have had it since I was 3 (well that's the earliest we can trace the symptoms to).

    I have been tested for Lyme more than once and all the types of tests - negative.

    I have had a low Vitamin D and got it back up to normal levels - no change.

    You name the autoimmune disease and I have been tested for it. I have been doing tests for 30 years.

    So I guess what I am saying is I must have Idiopathic FM. Meaning there is no real cause for it. People have this in many different conditions so I assume it must be possible with FM as well.

    Also, and I know I will get a lot of flack for this, I am one of the people who believes that FM and CFS are diseases in and of themselves (and my doctor believes this too) and not a Syndrome. I do believe that some day the word "syndrome" will be removed from FM and CFS because I think they will be found to be their own illnesses. Not saying that another illness can't cause FM or CFS to come up or that some of us may be predisposed to these illnesses. I just think that this will be one of the discoveries.
    [This Message was Edited on 08/23/2008]
  16. Forebearance

    Forebearance Member

    That was a good rant, dragon06!

    I think that because the cause or causes of FM and CFS aren't completely understood yet, it leaves a lot of people who have these illnesses wanting to investigate until they find out what the cause or causes are for them. Then, if they find an answer for themselves, they get so excited about it that they naturally want to share with everybody.

    It is possible that in a few years, the cause or causes of FM and CFS will become totally clear. And then your doctor might suggest you do a certain thing to treat your illnesses. I hope this will happen, anyway.


    [This Message was Edited on 08/23/2008]
  17. lrning2cope

    lrning2cope New Member

    I too have "just" FM . When I first came back to this board after having been away for a while , I didn't know if it was an FM board or not . I thought it was a CFS/Lyme board !
    I agree that we should try and find anything that will help us ,but I am disappointed that FM itself is not talked about very much . That was a hard blow for people like me , who have been invalidated so many times by those who don't believe in FM.

    Yes , the cause is important , but how about those who have found the cause and want to treat the condition now ? Maybe someone whose 'cause' has been taken care of , if they found one , and now just want to learn to live with what is left?

    Once again , I want to say that any way someone can feel better is the right way - for them .

    So , yes , Dragon06 , I totally understand and believe that you have FM , the disease that is a disease in itself. That is more than enough to have to deal with.


  18. lsaxton65

    lsaxton65 New Member

    i agree with you 100% about the area maps. thanks for giving out more info on it. i did not know as much as you!

    you know, i think people took it wrong when i said "i refuse to lay down and die".

    jam...i can see how that would have offended someone who might not be as open minded as others. but i agree that some people just want to debate and argue. by the way, i don't recall anyone on this board being called stupid or stubborn.

    what i posted was in reference to me and not the original poster. didn't she ask people what they thought. in my opinion, if you're going to ask a question, be prepared for the answer.i ALWAYS think of this when i post a question.

    with that said...(i'm only talking about me now) i know there are other posters on this board that are from another country or state. the language is a bit different and words or phrases don't always mean what they mean here in tx. it is also difficult to interpret written material with emotion. let's not forget fibro fog and the emotional ups and downs of FM.

    something that was written as non-judgmental or non-pushy may not be interpreted as so by someone else. i've had some pretty harsh comments given to me, but i did ask the question and it was there opinion. however, i did not jump back in to start up a debate. i accepted it because that's how i am.

    i'm glad you mentioned how this board can run sometimes. i don't keep up with the trouble you said they must have alot of energy.

    and just so the both of you will know, i'm not "searching" or "chasing" a dx. i am using information from the knowledgable people on this board (like you 2) to help me be proactive about my health and prognosis.

    thank you both for all of the info you share

    guess i was little chatty

    thanks for the info bunny fluff

  19. bunnyfluff

    bunnyfluff Member

    Don't feel invalidated. I think there are people that can have "just FM", however, many are told they have FM without being tested properly for other things. Like me.

    And like many others, my symptoms continued to increase. FM is not supposed to be progressive. So, I knew there had to be more to the story. Many others are in this same boat, and that's why we look deeper, and many have found other underlying causes.

    If you are happy with FM, be happy with FM! Work on the things you can control, and find joy in what you can.

  20. dragon06

    dragon06 New Member

    I know that it has been said that FM is not supposed to be progressive but more and more doctors are saying that it can be. I know for myself and my mom that it is.

    Just because it is progressive doesn't mean it has to be something else. And by progressive I mean that the current symptoms that I have get worse as the years go by BUT I do not get new symptoms. So if you have a condition that you keep getting new and unexplained symptoms then perhaps then you do have something else as the underlying cause.