New to Fibro

Discussion in 'Fibromyalgia Main Forum' started by Tizz, Jul 23, 2010.

  1. Tizz

    Tizz New Member

    Actually, that can't be true. If this is all fibro then I've had it for over 7 years, it's just been misdiagnosed. (I know that's true for a lot of people.)

    Right now I'm just kind of stunned. I wouldn't say I'm in denial about having a painful chronic illness that *won't* kill me - fibro is actually less awful than some of the other possibilities my docs have investigated. And the more I learn, the more I discover that fibro fits many of my odd symptoms that I've always hesitated to even talk to my family doc about, much less anyone else...

    I'm kind of torn between anger and confusion. Anger, because I've spent the last 7+ years going to neurologists and being told I had neurological problems. Anger, because I finally went to an uber-specialist to try to find out why my neurological symptoms and diagnoses seemed like we were trying to fit a sqare peg into a round hole. It just didn't fit... But neurologists never even mentioned fibro to me. The uber-specialist did a huge battery of sophisticated neuro tests that all came back normal (or close to normal) and then declared that there is nothing neurologically wrong with me - and my problem is "psychological". She strongly implied that she believed I was faking all my symptoms and lying to her about everything.

    I guess the uber-specialist one of those pigheaded doctors who don't even "believe" in fibro.

    Anyway, there's a new rheumatologist in town and - after I told my family doc I won't see another neurologist - she sent me to the rheumatologist to be evaluated for fibro. (He diagnosed me with the new guidelines, so I'm not sure how many tender points he found.)

    But I find myself thinking, "Now what?!"

    After all those years believing I pretty much knew what I was dealing with, and having made my peace with it, suddenly I'm starting all over again. And of course, I'm not really sure who to believe... it's all confusing. But the fibro diagnosis fits that round hole a lot better than the square peg did.

    Has anyone else here been through something similar to my experience?

  2. DayByDazey

    DayByDazey New Member

    My family dr has not diagnosed me with a thing other than a bit of arthritis. That was a yr ago. I explained me fatigue to him & shooting needle like pain in my L foot. He just replied I doubt it and he also said I have people in a lot worse shape than you are who are working & he left the room. When I went to him 2 months ago & saw my L hand knuckles inflammed along with my feet & other things going on he said I can send you to an arthritis dr. That Dr was a diabetic foot dr. That Dr xrayed my feet & sent me to a rheumatologist. I was completely shocked w/the diagnosis. Osteo Arthritis, RA, Fibromyalgia & diabetic neuropathy. I haven't been to my GP since then. Waiting for my records to go from Rheum to GP so he has it in front of him so that I can choke him for not taking my pains & complaints seriously. I can't wait to see what he has to say now. I may have to get a new GP. I got up this AM after working the past 4 days & couldn't move. Completely stiff & fatigue & fibro fog. This site is great for info.
    Take good care! C
  3. Tizz

    Tizz New Member


    Definitely sounds to me like you need a new GP, although I know how hard it can be to find a good one...

    I'm very lucky about that; my family doc is good, and she definitely "believes in fibro". In fact, her mother has it. But just like me, she took the word of the specialists [neurologists] who were treating me.

    The uber-specialist was dead wrong, by the way. I do have peripheral neuropathy but it is sensory (small fiber) neuropathy and mild. [Nerve conduction studies don't pick up on much (if anything) unusual when you have small fiber neuropathy.] The rheumatologist confirmed that, and so have a string of other doctors. But I knew that my neuropathy couldn't be the only problem I was dealing with; there were just way too many things I've been going through that didn't fit with that diagnosis. That's why I went to see that obnoxious uber-specialist, and paid her all that money to do terribly painful tests on me. It really makes no sense at all for someone to agree to have a lumbar puncture, unless they really are in pain and dealing with some disabling symptoms.

    Thanks for responding! And nice to meet you...

  4. Tizz

    Tizz New Member

    Nope, Susan, it wasn't a glitch...

    I confess to not having read the post that says "read this first"!

    I guess I can try to blame it on fibrofog...

  5. DayByDazey

    DayByDazey New Member

    Good Morning! Tizz in reading your post that you could maybe blame it on Fibro Fog. I guess I needed a well-deserved chuckle cause that was funny. I'm a self-induced independent person. I can do it. Don't need any help. If you want it done, do it yourself type mentality. Well, I'm learning to ask for help albeit the hard way. But, yeah Fibro Fog could be a great assistant couldn't it. Such as I ran out of sugar free coolaid & green tea at 10:30 the other night. I guess I could have said my fog made me forget, could you possibly go get some. Honey, I saw the cutest silk pajamas, could you get them for me. (I'm beginning to become sensitive to some fabrics on my skin). My guy would have done that even at 10:30 PM. He's so good hearted & he already helps me do anything that needs done. He gets on to me if I overdo it. Sometimes I just need a giggle when I'm currently in a crash and I take everything too seriously anyway. I won't remember posting this-maybe it was the Fog! See I've already picked up a bad habit by meeting you. I hope you & everyone have a light-hearted day Tizz.
  6. Tizz

    Tizz New Member

    LOL, Connie!

    Since I'm brand-new to this diagnosis I haven't gotten that good at it yet - but hey, I guess maybe fibro has its perks after all! "Sorry Love, I didn't get the dishes done yet, I guess it was my fibrofog..."

  7. Tizz

    Tizz New Member

    Susan - or anyone:

    Since I had accidentally posted the first time on the ProHealth main page, I was trying to check it and see if there were any answers - but I can't figure out how to do that! Whenever I'm on that page, all I see is a page for WRITING a post, and the drop-down menu to select specific topic pages.

    Maybe I'm going blind, or crazy (blame it on fibrofog!) but I just couldn't figure out how to look at those posts on the main ProHealth page. Can anyone help me out with that?


  8. Nanie46

    Nanie46 Moderator

    I think you mean the "Health" board.

    Near the top right of this page is a drop down menu where you will see "Select a Board".

    Click on the drop down arrow and you will see all the names of the boards.

    Select "Health" and then you can see the board that you originally posted on.
  9. Janalynn

    Janalynn New Member

    Welcome! You're right in saying that a lot of people go through many years and Dr's before being diagnosed. Many times it can be because of incompetent Dr.'s for sure - other times because everything else has to be excluded, so many Dr's don't know enough about Fibro, etc. etc.

    I understand the feeling of "now what?" I've probably had Fibro for 25 yrs but was only diagnosed 4 yrs ago. I went through my first bout of Dr.'s visit to try to find out what the pain in my legs stemmed from way back when - coming away without an answer, but a diagnosis of IBS. Many other visits in between then for pain, nerve issues (believing I was in the early stages of MS for a while), I came to the conclusion that "this was the way my body was". I learned to adapt, knowing that I couldnt take a catnap for instance (anything less than a couple of hours) or I'd wake in severe pain, and other little "quirky" things I thought I had.

    Finally the pain was more than I could manage. Pain medication didn't even relieve it completely but it did take the edge off. When I needed to find a new GP quickly for severe pain in my left arm she immediately sat down with me and asked me several questions, then sent me to a well known rheumatologist here as she suspected Fibro. The rheumy officially diagnosed me.

    I remember leaving the office feeling relieved. I had an answer. Then immediately - what now?
    Since being diagnosed I have had a MUCH harder time emotionally than I ever thought I would.

    I have been fortunate that I haven't had any encounters with Dr.'s who have not "believed" in Fibro. I've only been treated w/respect. It angers me when I hear people being treated otherwise.

    I also don't like to hear people being diagnosed w/Fibro who don't actually have it. Lots of people diagnosed "freely" it seems lately. Everytime I turn around it seems I hear that so and so has that, then I hear how they barely even have any problems at all. One woman had "a little in her hand". I won't go on and on about that. =) I've already rambled enough!

    The rheumatologist should have experience enough to diagnose you. What did he offer you as far as treatment?

    I look forward to getting to know you better - this is a great place for support and information!

  10. Tizz

    Tizz New Member

    Thanks, Nanie! I'll [try to] remember what it's called, from now on. Looked like there were some interesting topics on there...

  11. Tizz

    Tizz New Member


    The rheumatologist I saw diagnosed me according to the new guidelines, and then told me to keep using the same meds I was already taking. But my family doc (whose mom has fibro) had already told me that she thought I had it.

    Did you read about those new fibro guidelines in the US? They were designed so that any doctor, whether they believe in fibro or not, can make the diagnosis. I checked out a website discussing the new guidelines and how they work -- they actually seem very reasonable -- but, the idea that doctors who "don't believe in fibro" will be DIAGNOSING it now, seems absolutely crazy to me!!

    [This Message was Edited on 07/25/2010]
  12. Nanie46

    Nanie46 Moderator

    I copied and pasted my reply to you from the Health Board:

    Hi and welcome!

    Let me start by saying that I had a FM diagnosis for 21 years before discovering the real CAUSE of my symptoms....a chronic borrelia burgdorferi infection (Lyme disease). It is a bacteria that can cause lots of symptoms including fibromyalgia pain.

    Now you may Dr tested for that and my test was negative.

    So was mine and many, many other people's with lyme!!

    Testing for lyme is VERY UNRELIABLE. In fact, Lyme is a clinical diagnosis based on history, symptoms,and exam, NOT a lab if your Dr ruled it out with just a test, that is WRONG.

    In fact many, many people here on the FM/CFS board later found out that they actually had Lyme and some commonly associated coinfections like Babesia, Bartonella and Ehrlichia.

    Many people went through many, many Dr's looking for answers. We usually figured it out ourselves through research and then found a Lyme literate MD.

    Even though you may feel like you now have the correct diagnosis, remember this.....something caused it right?...and you must find it in order to recover!

    It is likely caused by one or more infectious pathogens and your Dr will not bother to look for them now that he has given your illness a name.

    Take a look at this info....this booklet contains a great symptom list and tells what diagnoses people are often given when it is really Lyme:

    Also very important paper with great symptom list pages 9-11 and coinfection symptom info pages 22-27:

    Also read:

  13. Tizz

    Tizz New Member

    I've been tested twice for Lyme disease, a few years apart, and both tests were negative. But it's very interesting to learn that the test for Lyme isn't very reliable...

  14. bigmama2

    bigmama2 New Member

    and welcome. (sorry to hear of your health problems/fibro). I have cfs, but not fibro. your experience w random strange symtoms going on for years and years with no proper diagnosis is sadly very typical for many of us here. and yes so many of the drs just love to tell us it is all in out heads/pyschological/psychosomatic. that is one of the most aggrivating things! i had to see a neuro because i was having night seizures that would wake me up. he suggested it might be psychological. i was like are you friggin kidding me?! he did eventually say ok its not psychological. uhhhh, duh!!!!!

    going thru all of this - your emotions of anger, frustration, confusion, etc are totally normal with what you are dealing with. i had and still have all of those. fun fun fun.

    just to let you know- everyone and their fibro or cfs is unique. some people do get substantial improvement. some dont. but there is hope, because of those that do have improvement. i am much better that i was years ago.

    you will find lots of understanding on this board.
    best wishes,
  15. Tizz

    Tizz New Member


    Thanks for your message! You really seem to "get" where I'm at, right now.

    You said, "so many of the drs just love to tell us it is all in our heads/pyschological/psychosomatic. that is one of the most aggrivating things! i had to see a neuro because i was having night seizures that would wake me up. he suggested it might be psychological. i was like are you friggin kidding me?! he did eventually say ok its not psychological. uhhhh, duh!!!!!"

    I really think it's crazy that any doctor would think we are faking this.

    I mean, how can they decide that we've been driving to their offices and waiting around for (sometimes) HOURS just for the "privillege" to spend 10 or 15 minutes with them [they charge 200-400 dollars for that!] and we've been putting up with test after test, most of which are painful [and even more expensive] -- but they assume we're only "faking it" because they think we're "eager" for their lousy medical attention?!!

    Would anyone go through a LUMBAR PUNCTURE just to spend 15 minutes talking to some doctor? AAAArrrgggh!


    [This Message was Edited on 07/25/2010]
  16. bigmama2

    bigmama2 New Member

    yeah, a painful lumbar puncture test sounds really great. thanks for the "tip". i'll be sure to sign up for that whole deal, just for the sheer fun of it- because i am mentally ill and i enjoy wasting money, enduring painful testing, and then a 10 minute chat w a dr who has delightful insight and bedside manner.

    HAAAAAAAAAAA! LOL RIGHT. like we dont have better things to do. grrrrrr. yes as you can see, we neglected patients get a tad angry.

    i am sure many many others here totally "get" where you are. i have seen tons of posts that express the exact same sentiment. its a terrible situation to be in, but it does help to know that others have been there too, and truly understand.

  17. Nanie46

    Nanie46 Moderator


    You may want to go to on flash discussion.....sign up for on the Medical Questions Board....and read posts and ask any questions you want by posting them.

    You will find MANY people there with lyme who have only had NEGATIVE test results.
  18. Tizz

    Tizz New Member

    It's VERY nice to find people who understand, and who can help me to laugh instead of cry (or try to bash in a wall)!

    Thank you all.

  19. Misfit101

    Misfit101 New Member

    Hi Tizz...i would urge you to check out the links that nanie provided. I thought my FM had kicked into hyperdrive and went on the hunt for support. I found this board. And nanie picked up on my symptoms and posted the links. It all fit...a round peg in a ROUND hole! Im one of the few that had a positive Elisa. And my GP doesnt know what to do with me. Not uncommon. It doesnt hurt to look and maybe you might find answers. I owe a debt of gratitude to nanie and others that i cant repay. Good luck...i wish you the best!
  20. Tizz

    Tizz New Member

    Please believe me, I'm not "blowing off" anyone's advice! I'm taking everything in for future reference, and composing a list of questions for my rheumatologist when I see him again (unfortunately, that will be 5 months from now).

    I will ask him about Lyme Disease and CFS when I get the chance. I have several other things to ask, too, based on issues that people here have brought up...

    I don't know this doctor, though. I've only seen him once, and that was the initial visit - which is always longer and more thorough. I have no idea how he will react to my list of questions, and he is (unfortunately) the only rheumatologist in town.

    When I do see him again, I'll let all of you know how it went.


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