Just diagnosed with Fibromyalgia...

Discussion in 'Fibromyalgia Main Forum' started by valleyann, May 16, 2006.

  1. valleyann

    valleyann New Member

    Hello Everyone,

    I went to my first Rheummy Appointment today and was surprised to walk out with a diagnosis so quickly, he says I have Fibromyalgia... for some reason I find it hard to believe him, not that I question whether I have it, but he seemed so cold and uncaring and he came to his diagnosis so quickly.

    Anyways, even though I have doubts about this doctor...I will choose to accept what he says. So I am posting a message on the CFS & FM Message Board, wondering if anyone has any advice for me? Or any stories about their first Rheummy Appointment?

    Thank you!

    Valleyann
  2. TxSongBird

    TxSongBird New Member

    Did the Doc do any blood work, because he should have to rule out Rhumetoid Arthritis and other illnesses. My husband's Rhumetologist is very thorough and spends a lot of time with him when he see's him.

    TxSongBird
  3. jenni4736

    jenni4736 New Member

    You will need to have a good relationship with your doctor. This will be a long relationship. If you do not feel he is giving you adequate time, say so. Doctors are an important part of keeping you well. You need one that you can easily talk to. Try him a few more times and be honest about how you feel. If he doesn't have good listening skills, then maybe he's not the one for you.

    I think that we put doctors on a pedistal and we sometimes just take them as they are. I am one to speak frankly.

    You might find it helpful to keep an ongoing list of questions that may arise between visits. Sometimes we forget once we get the doctor in the room finally.

    I highly suggest reading everything you can get your hands on. If you put "symptoms" in the search box you will find a previous post with a good list. If it is Fibro. many of these symptoms will ring true for you.

    Keep in mind that if you only have a few symptoms (joint pain, sleep issues,etc) it doesn't mean that you DON'T have FM. I have had it for over 12 years and this last year I got a LOT of new symptoms I had never had before. My FM had been quiet for over a year before this episode (which started in Nov.)

    FM is very different for all of us. There are definatly common things though. Hang around this board and ask all the questions you want. The people are really terrific here and most do not mind answering even the most personal questions. I find these people here to be very kind and supportive....and that is a great feeling.

    jenni
  4. valleyann

    valleyann New Member

    Hello, Thanks for your quick response to my post. :)

    He did test for the trigger points and I think all 18 hurt when he touched them (if I'm remembering correctly). I have pain literally everywhere! It's crazy...hands, wrists, elbows, shoulders, neck, head, tmj, lower back, hips, knees, ankles, and feet. I suffer from terrible Tension Headaches, stabbing pains in my chest, and Acid Reflux/Heartburn.... To some it up, I feel as though I am falling apart.

    I have always had problems sleeping...it takes me forever to fall asleep and once I do I wake up often during the night.

    I cannot consciously relax my muscles... I wish! haha! I just take as many Advil Liquid Gels that I can get my hands on! haha!

    No worries about the "spanish inquisition", haha, keep the questions coming. I love being able to compare how others feel, it's nice to know that I am not alone in this.

    How about yourself? What's your pain like? What were your symptoms?

    I completely know how you feel, except for the most part my doctors have taken me seriously... my problem is pretty much everyone else! But now that I have a name for my pain, they can't call me a "hypochondriac" anymore! lol Man that ticks me off!

    I think that it's great you are helping other people out with the same illness...you are using it to do good in your life, and that is great!

    You know my Rheummy told me to have a "hot bath" when I'm sore! lol ok! haha! He also told me that Fibromyalgia is not something you have to have for the rest of your life. He said that if I exercise I "might" be able to get rid of my symptoms. Which sounds great, but is this true? I thought it was a disease that you have to work with for the rest of your life, but the way he is talking it is "fixable"?

    Valleyann
  5. valleyann

    valleyann New Member

    Hello! Thanks for your response!

    My family doc already did a blood test previous for Rheumatoid Arthritis, and I did do some blood work this after checking my Thyroid, Kidneys and a few other things. So I guess he is checking for other problems...but how can he tell me before he gets those results that I dont' have Lupus or another related disease?

    Thanks!

    Valleyann
  6. TxSongBird

    TxSongBird New Member

    I guess I question why the Dr. would say that you don't have to have Fibro for the rest of your life. You will have flares, but it will never go away and there is no cure for it as of yet. I don't like statements like your Dr. gave to you about the disorder. I feel that when a Dr. says something like that, he does think it truly is in your head. Sorry if this offends anyone, but I had to spit it out.

    TxSongBird
  7. valleyann

    valleyann New Member

    Hi! Thanks for your response Jenni! :)

    I have to say that I have a really good relationship with my family doctor, but the Rheummy is the one I'm concerned about. He just doesn't seem to really care all that much. But hey, I've only seen him once, so I could have caught him on a bad day right?

    By the sounds of it, he doesn't seem to think I'll need to see him again. He said that there is nothing that he can really do for me anymore, that it is in my hands to exercise and that exercise will make me better. Does this sound right? Cause it seemed a little odd for me... like he didn't really see it as a "real" problem. I thought Fibromyalgia was a disease, not just something you can get rid of with some exercise...but I might be wrong? Heck I hope I'm wrong! haha! What do you think?

    I have many symptoms and they all seem to match up with Fibromyalgia, but how can he rule out Lupus or some other related disease in such a short amount of time? It just all seemed to happened so quickly...

    Valleyann
  8. TxSongBird

    TxSongBird New Member

    I would question the Rhumey saying that it is in your hands and exercise will cure your problems. I don't think that is very professional of him and I don't think he should have dismissed you liked he did with that statement. If you don't like what he said, or don't feel comfortable with his bedside manner, look for another Rhumey to go to.

    TxSongBird
  9. valleyann

    valleyann New Member

    Hello!

    I know, that Rheummy didn't really seem like he was taking me serious at all...or that he even cared. Maybe I'll just try doing some research on my own and with the help of this board to see what I need to do. And exercise, of course. :) If it gets worse or persists then I'll make an appointment with another Rheummy, someone who will hopefully take me and Fibromyalgia more seriously.

    If Fibromyalgia is as common as I hear, why are some doctors so against it being a "real" disease? I just don't understand....

    You know it really makes me question myself, is it all in my head? am i making myself feel pain (in some twisted sick way)? That's why I hated when my family called me a hypochondriac. Because those are the people you are supposed to be able to turn to for support and they let me down the most. As with the Rheummy...

    Ok, wow... had to vent for a minute. Sorry bout that! :)

    Valleyann
  10. valleyann

    valleyann New Member

    Hello again!

    I just checked out your profile and you are very pretty yourself! Very funky outfit! And looks like your an October baby just like me! I wish I was 20 still... I'm turning 26 this year. :( but I feel like i'm 60! haha!

    When I read in your profile that you get THE CLAW I was kindof (oddly enough) relieved that I'm not the only one! I hate it when that happens! I feel so incompetent when my hands lock up like that. I don't even have to be doing anything strenuous for them to lock up.

    When the Rheummy checked the 18 points in my body, my left side seemed much worse than my right side. When he pressed on the ones on my hips I nearly started to cry! I never realized how bad it was...crazy.

    I get such bad knots in my shoulder blades, but I get the worst knots in my neck! Aghhh! Very painful... and then I get the dreaded Tension Headache. That's when I just want to crawl under a rock for a couple months. lol But that happens often, so I'm getting used to it. Do you get headaches?

    What is with doctors and this disease? Why don't they believe in it? My Rheummy pretty much talked to me like, you don't have Rheumatoid Arthritis or Lupus, so you don't have a problem!?! What's with that? When I'm feeling pain like this I know I have a problem...aggghhh. So frustrating! Well I'm used to my friends and family saying it's all in my head, so what's new...it's just sad. They of all people should understand the illness a little more and believe in it. It just doesn't make sense.

    Oh I completely know how you feel, about the social life bit, I hate the smell of cigarette smoke! It makes me sick! I don't party anymore because I'm always tired or in pain, an NOBODY understands that. They just think I'm trying to brush them off if I don't go out for drinks. I try to explain that I'm in pain, but that doesn't work. Well now that I have a name for it, maybe they'll believe me. ;)

    Thanks for the list that you bumped me! I really appreciate it. Alot of good advice in there... Well as you can see I kind of go off in tangents too, so no worries!

    So you're in England hey? Did you grow up there?

    Valleyann
  11. TxSongBird

    TxSongBird New Member

    We all understand each other on here and Fibro is real and hopefully some day more Dr.'s will listen to us and will understand our pain. I was labeled as a "all in my head sickly person" too when I was younger and my family Dr. treats me for Fibro and has been very understanding of my pain and will listen to me. Most Dr.'s are not interested in listening to our problems with Fibro and dismiss us without thinking twice.

    TxSongBird
  12. place

    place New Member

    There is a ton he could do! Mine started me off with Nortriptyline for sleep and to bring my pain down.

    I started taking it 6 weeks ago, I not sure if I am just on an upswing but I feel almost normal. I can read a book (hold onto it) for hours when in the past I could not go over an hour or I would be in pain for days.

    Today, I went to work, went to the grocery and then walked the dogs. Before the medication, at 10:30am, I would have pain in my feet. Now nothing!

    Move on, find someone else, it will be the best decision you ever made!

    Good luck!
  13. valleyann

    valleyann New Member

    Moving to Germany? Wow, that sounds exciting! Are you fluent in German?

    Nothing is being done for my CLAW...unfortunetly when I asked the Rheummy about it he said I should exercise it. That's it. Ok, very helpful doctor. ;) When does your CLAW usually happen? Does it happen with both hands? How long does it last?

    I haven't tried the tennis ball thing but I think that I will definetly give it a shot. Usually I just use hot compresses, take Advil Liquid Gels, and try to sleep it off. Sometimes it will last for days...

    I'm going to read that spoon theory tonight. I'll let you know how much I cried! ;)

    Valleyann
  14. valleyann

    valleyann New Member

    I have another question for anyone who might be reading over this... do your joints crack? cause mine crack all the time, fingers, wrists, elbows, shoulders, hips, knees, ankles, and toes... i'm not sure if this is from FM or something else? Because to my knowledge FM affects Muscles, Tendons, and Ligaments...so why would my bones crack?

    Valleyann
    ps-i hope this is not a silly question. ;)
  15. valleyann

    valleyann New Member

    Hey,

    I'm sorry to hear about your hands. To be honest mine doesn't happen that often. Basically whenever I do something repetative or I strain them they clench and it's usually my left hand. Like carrying groceries or lifting something heavy...or washing dishes sometimes. Because it happens on my left hand and I am right handed I haven't been having too many problems as far as writing notes in class. I got frostbite on my fingers when I was 5 years old so they are quite deformed at the finger tips, so I know what it feels like to be embarassed about your fingers. I just hope my hands don't get any worse...

    Oh the "snap, crackle, pop" joints is soooo annoying hey? I feel like an old lady! Like my body is creaking! haha! I have pretty bad knees (I have Patello Femural Syndrome - spelling?) so I constantly have to crack them to make them feel better.

    Thanks for all of your help Prickles! You seem like a very nice person. :)

    Valleyann
  16. jenni4736

    jenni4736 New Member

    Well I hate to say it, but I agree with Prickles...sounds like Fibro to me too. I think a Rheumy who says things like yours did, is probably not the doctor you want to see.
    If it wasn't JUST a bad day...ditch him, you deserve better.

    If your regular doctor is good with you, than you may be able to just use him for now. I used my general practioner for years. He was great and very helpful, but after a while he became concered that HE wasn't doing enough for me.

    This "syndrome" (I refer to it as a disease)has so many different aspects to it that it is difficult for a practioner to be knowledgable in all of the areas needing help.

    For example I have problems with severe allergies (many have them to chemicals, foods, perfumes,etc). I also have problems with sleep, as most all of us do. I also have issues with IBS, dry eyes, severe dental issues, asthma, and chronic fatigue, sadly just to name a few.

    It takes several doctors who specialize to get the best treatment for me now. I have a general practioner, an allergist, a internist (with a Rheumy practice), a dermatologist, and soon a psychologist.

    I felt really good most of the time for the first 11 years or so after diagnosis despite some medical issues and some bad days. I experienced several fairly major issues in a short time last year. One of the things was that I had several months of MAJOR dental work done just before the holidays.

    Unfortunatly, I have been in the worst cycle ever since. I am 34 years old with three kids. My little one is five and I WISH I could bottle just a tiny bit of his energy for myself.

    My point is this. Your general doctor may be o.k. for now. But if I were you, I would do a search for a Rheumatologist in your area who has MANY patients with Fibromyalgia. It would be best to find you a doctor who you click with now. The reality is this DD progresses for many of us. Don't wait until you have a bad cycle to find a good doctor.

    You are young and beautiful. You have your whole life ahead of you. One of the biggest battles with Fibro is the mental toll it can take on you.Don't let it keep you down. Enjoy the simple things in life...smell the roses...watch the stars.

    Don't over do. Make taking care of *you* a priority. Many of us cared so much for others we forgot to take care of us. The better you take care of yourself now, the more likely you will be to never have a need for all of those other specialists.

    Much love,
    jenni
  17. valleyann

    valleyann New Member

    Same here, feel free to post me any time! :)

    Well, everyone has their own set of problems... I'm so used to having frostbite that i don't even really know any different. The good thing about my knees is with proper exercises they feel better...the problem is getting myself to actually exercise. Most days I feel like I don't have the energy or I'm already too sore. But I'm going to try...

    That's nice that your housemate helped you with your groceries. It shows that he really does care about you, even if he is ignorant about the disease.

    I just told my parents about my FM diagnosis... my mom said she is going to look it up on the net to find out more about it (which is good she is taking interest), but my dad seemed very uninterested like it was something I made up! Aggh! Oh well... How do you explain the disease to people? I just can't seem to get the right words... maybe I just don't truly understand it myself.

    I'm very glad that I found the board too. :)

    Valleyann
  18. valleyann

    valleyann New Member

    I'm pretty sure it is Fibro. Everything I have read seems to match up with my symptoms... but I was wondering how do you explain this disease to your friends and family? I'm at a loss for words, and I guess maybe that is because I don't really understand it?

    I can relate to how you feel about dental work. Ever since I was 11 I have been having dental problems... for some reason my teeth are very weak so I get cavities even if I brush and floss. And I have had 2 root canals and 2 crowns. I hate going to the dentist!

    I wish I had more energy too, like when I was a little girl and nobody could get me to shut up! haha! I used to be such a performer, song and dance, but now I'm so, well, laid back I guess. Oh well... I just got this new kitten and he is, for lack of a better word, crazy! So much energy! haha! But he's so cute... my little orange tabby. I love him. :)

    Thanks for the great advice Jenni! I think I am going to make an appointment with my family doctor to discuss getting another Rheummy.

    You know one thing that kind of made me upset, was that my Rheummy told me if I don't start getting better, most people with Fibromyalgia end up living in a basement suite without a job. I just found that really insensitive and very rude! How can he say a particular disease will make you poor over any other disease? I was very appalled at that statement...maybe he was just trying to scare me into taking better care of myself, I'm not sure. I just don't think it was very appropriate. Anyways, enough about the "bad" doctor...I'm going to change doctors so I just need to get him out of my head.

    Thank you very much for the kind words Jenni. I really appreciate it. I'm hoping I can make things better by exercising and making a lifestyle change. I want to avoid drugs as much as possible and maybe look into some natural medicine. Have you tried any natural medicines to relieve pain?

    Valleyann
  19. TxSongBird

    TxSongBird New Member

    When I turn my head a certain way you can hear cracking and sometimes my upper back will make these carcking sounds and it feels weird when it does that. I contribute this to Fibro also. Had a CT Scan so no broken bones or fractures, guess it is just the weird way the Fibro affects people.

    TxSongBird
  20. valleyann

    valleyann New Member

    The cracking is very annoying..sometimes it makes my joints feel better, except for my neck the more I crack it the more it seems to tense up and then the tension headaches come. Yah my Rheummy said my bones and joints are fine but I crack like crazy, so it must have something to do with Fibro.

    Valleyann