feeling scared

Discussion in 'Fibromyalgia Main Forum' started by srs7874, Mar 12, 2009.

  1. srs7874

    srs7874 New Member

    I was first told I might have fibromyalgia when I was 17 (I am now 34). I was having some joint aches and my mom took me to the rheumatologist. My blook work came back normal and he said "maybe you have fibromyalgia". For the past 17 years I have doubt this semi-diagnosis. While flare-ups have come more frequently and lasted longer, I have never really been on any meds for it (tried Cymbalta for 2 weeks and hated it) and have managed to get thru it. But things are finally starting to get worse. My flare-ups are interfering with my life as a wife and mom. I have two boys, ages 4 & 6, and I just don't feel like I am the fun and vibrant mom I always wanted to be.

    I am scared for 2 reasons. I am scared because of how bad I might someday get and I am scared because I don't understand when to dismiss something as fibromyalgia and when to pursue another diagnosis. I am a hypochondriac . . . but I think it is a product of this illness. I am always worried my weird aches and pains are something more dire, so the more new symptoms I get, the more I worry. For the past month I have felt horrible, mostly with PMS type symptoms (headache, achy lower back, cramps, leg pain). This is not the first time I have had these symptoms but definitely the worst. I saw the OBGYN this morning for yet another pelvic ultrasound. For the first time she did sort of look at me like I was crazy. I hate that! I am sitting here with a bottle of Lyrica. The prescription was written for me months ago but I never felt like I needed it. Now I do, but am too scared that the side effects will make me feel worse than the fibro!

    I don't often post on this site because, as yucky as I am feeling right now, I know it does not compare to how many of you feel every day. I guess that is why I continue to doubt the diagnosis.

    Wow, this was quite a vent. Thanks for listening.
  2. loto

    loto Member

    FM is such a strange thing to me. I have had this diagnosis for almost a year now. Before I got the diagnosis I, too, felt like a hypochondriac, going to the doctor for separate little things before I realized I had to put all the problems together! Anyway, I think you should see a doctor and tell him/her all your symptoms and tell him you want to know what in the world is wrong with you!!! My quality of life has gone slightly down-hill since I've had this. Eventually I found the right combination of meds that helps me cope day to day and continue working and getting up every day! And if you don't like taking prescription meds, there are lots of people on here who go the natural route. Maybe they'll read your post too and advise you on what works for them. But, I do suggest you go get diagnosed for something so you don't worry all the time about what is wrong with you. And, don't worry about posting all your problems! We're all here to help and support each other!!!!
    Compassion and support is what we all need!
  3. wendysj

    wendysj New Member

    Hi srs7874!

    I know what you mean... I have been pretty sick since I was 14. It took doctors two years to find my endometriosis. During that time, I cried because I genuinely didn't believe the pain was real... I thought I was making it up for some reason. That was 12 years ago and I still to this day think the same thing when I have to call another specialist.

    I have two people in my head. "Call the doctor, don't let your symtoms get worse." "Really? Do you really need to call the doctor or is this just something you've made a mountain out of a molehill?" That gets SO old after 12 dang years. I found a counsilor who helped me deal with that so it doesn't really make me crazy anymore, Thank God. But it is still there. If you need help dealing with the pain/crazy feelings, find a good counselor. Mine is my "life line" when I need help.

    My Rheumy doesn't think Lyrica or neurotin will help me. I was diagnosed with CFS by the Mayo Clinic 5 years ago or so... It's just been in the past year that I have started having FM pain. My doctor gives me Flexiril to help me cycle through the different stages of sleep and I take Vicodin to get through the day. I also use my elliptical everyday for 15 minutes. I still work full time and have a semi-normal life. I've very lucky to have my family, friends and co-workers.

    My advice: Find a doctor who cares and will diagnose and treat you. That will at least stop the guessing game for you.

    This is the place to vent and ask questions. We're here when you need us.


  4. shari1677

    shari1677 New Member

    Hi srs7874. I have been on Lyrica for a couple of years now and even if I lower the dose by a mere 25%, my symptoms flare. The two major side effects I have noted are WEIGHT GAIN and ankle swelling, although I am on a very high dose of 600 mg a day. I had so much pain a year ago that I required BOTH Lyrica and Topamax, both at their highest recommended dose.

    I quit taking the Topamax not too long ago because it made me stupid - seriously it did. I couldn't comprehend anything at work. Luckily, at that time, I was able to wean off of it without being in pain and now all I take is the Lyrica.
  5. nixon

    nixon New Member

    If I were you, I would go to a dr., and it doesn't have to be a Rheumy, it can be your family dr. Explain all of your symptoms, advise that years ago, you were told that "You probably have Fibro".

    Did the rheumy do the TENDER POINT test? If not....have that done, get blood tests done AGAIN to rule out Autoimmune Disorders, Arthritis Profile, Rheumatoid Factor, and anything else the dr. may find pertinent,the PMS type symptoms COULD certainly be "Fibro", but they should rule out other things too!! Concerning the GYNO.....does having sex cause you pain?? I'm wondering why you just went to the GYNO? ( Because you believe they are just PMS??) Are you still having joint pain? Is there any swelling involved? What are ALL of the strange symptoms that you are experiencing?

    I've been on Lyrica twice in the past 2 yrs., quit taking it usually after 2 months. The biggest thing I experienced with it was : a bit of weight gain....maybe 7-10 lbs. The one thing it helped me GREATLY with was SLEEP, I took it right before bed. Got some of the best sleep of my life the 1st month, then not as much. I quit, because I just didn't feel it was REALLY helping much....other than sleep (in the 1st month), and getting a GOOD nights sleep, usually can help with pain. Do you sleep well OR NOT?
    I hope that you are able to get some answers.....If you'd like please post more about ALL of your symptoms, and write it all down before going to the dr........that way you don't get upset/stressed and leave anything out! You shouldn't have to sit around and wonder if "It's All In Your Head". Let us know! We will try to help you!!

  6. srs7874

    srs7874 New Member

    Thanks so much for the support. I guess I should clear a few things up . . .

    Seventeen was the first time I was told I might have fibro. I have been given the diagosis many more times since then. I have seen rheumatologist, neurologists, internists, etc., have had multiple brain mris, tons of bloodwork, an emg, etc. My doubt comes from the fact that my symptoms have always been so much more mild than what I read on this site. I mean, I have never been on any prescription meds and, for the most part, have managed OK.

    I chose to go to the gyno because my symptoms feel hormonal. While I know it just might be the fibro, I want to rule out any gyno causes. I was also having some increased discharged and am being greated with metrogel for a bacterial infection. I actually don't have too much joint pain. It is more muscular . . . in my butt, down the sides of my thighs and lower back. Past flare ups have included finger pain, knee pain, elbow pain and occipital nerve type throbbing pain in the back of my head. I have had episodes of muscle twitching, problems with vulvodynia (mostly itching) and mitral valve prolapse. I have flare ups that involve mostly the left side of my body from my head to my shoulder. My glands hurt, my ear hurts . . . and I have had a few neck CT scans for this. I have had some bouts of mild costochondiritis which is mostly painful when I touch my chest. I have a chronically runny nose. I know their are other symptoms that I can't think of at the moment.

    I seem to get enough sleep . . . I just wonder if it is good sleep. I had a sleep study done about 6 months ago but it was inconclusive. My 4 year old is a horrible sleeper and comes into our room a lot. Even though my hubby is great and willing to get up with him, I often have a hard time getting back to sleep. I do have a prescription for Ambien. Maybe I should try that.

    I know that some people do have more mild versions of this disease. Maybe a lot of them do not post on sites like these because they do not need as much support. It is just hard for me to accept that I have the same thing many of you do, when you are suffering so much more. I live in Las Vegas and, with my insurance, have a very limited number of rheumatologists I can see. If anyone from Vegas can recommend one, I would really appreciate it.

    Thank you again for listening and supporting!
  7. nixon

    nixon New Member

    I've seen drs. in Vegas, but am currently doing ok with my dr. here in Pahrump....She's just Family Medicine! I was diagnosed in 2006 with FMS/CFS......a very SEVERE case!! I've had many( and I STRESS many) docs make me feel as though I'm CRAZY......but I'm NOT, and this lady I see now, truly respects me & wants to help!!

    This past month has been HELL for me.....I've recently developed a BUNCH of new symptoms......my symptoms in the past 5-6 years I could fill pages upon pages with!! I've only been to one Rheumy in Vegas, and he treated me like CRAP....wouldn't even do blood tests for me. I've also spent THOUSANDS of $$$ at the Fibro & Fatigue Center in Vegas.......the only good thing I got from them was ALOT of blood tests that were pretty informative, and they kept me in pain pills when I was suffering severly & the other drs. I'd seen ( including the Rheumy) just wanted to dismiss me, or had me anti depressants!!! I wasn't EVEN depressed at that time, just suffering with unimaginable pain.

    I tried the Ambien, it didn't really help me AT ALL......The Lyrica helped me much more with GOOD SLEEP.

    I can tell you about some gynecological issues I've dealt with in the past few yrs.-but right now.....I need a break from the computer, I've been on here WAY too long this am.....since 4:30........catching up with what I missed yesterday as I was at my Dr. for nearly 3 hrs. yesterday.....it was the most time she has spent with me So far....I've been seeing her for a year now. Oh.....by the way.....I don't know of a good-fibro friendly Rheumy there, but There are some others here from Vegas that might know of one????? Post another post if you want calling out to fellow Las Vegans regarding Rheumy........I'll reply MORE in depth to you later, It's nice to talk with someone just " Down the Road"!!!! Andrea
  8. srs7874

    srs7874 New Member

    Pretty funny we live so close. I am not surprised that you don't have any good advice about rheumy's here. My friend has lupus and she has had a heck of a time finding a good doctor. I'm glad you have found one close to home that you like!

    Take some rest from the computer and fill me in on your gyno stuff when it is convenient for you. Thanks so much!
  9. nixon

    nixon New Member

    I just had it ALL typed out, as I pressed send it disappeared.....I'll do it again!!!!
  10. nixon

    nixon New Member

    Ok- My first question is have you ever been dx with HPV? The reason I ask is because the itching, increased discharge, and infections could ALL be HPV related. You wouldn’t even necessarily have to have a bad pap, to be dx with HPV……but if you do come up with an inconclusive or BAD pap, they are supposed to go ahead and do HPV testing.
    Secondly- To me it sounds like you do have FMS/CFS….even if it hasn’t been as bad as some of us! It does sound like you have/have had the quirky weird symptoms. Although your pain/conditions haven’t required any Prescription Meds., count yourself as being LUCKY so far!! I also wanted to ask if by any chance you get the About.com Fibro newsletter??? It is an excellent publication by a lady who also suffers with these things. Anyhow, yesterdays issue was ALL about STRANGE SYMPTOMS!! It was a great issue. If you don’t subscribe to it, you should….it’s also very informative, just like the PRO HEALTH newsletters.
    Third thing- I have HPV, also HSV, and a handful of other viruses-mycoplasma pnuemoniae, Immunoglobulin G very low also ( which from my understanding causes persistent Sinusitis & allergic diseases) I’ve suffered SOOOOO many sinus infections it’s unbelievable!! Anyhow…….regarding the gynecological issues, I used to suffer with what seemed like NEVER ENDING PMS…back in Feb.’o7, I was suffering badly with bloating, stomach pain, a really bad pain on my right lower abdomen, horrible lower back pain, etc. and my family dr. at the time tried to help me , he ordered blood tests for my hormones & thyroid , even a blood test for “Valley Fever” ( a problem out here in the desert), a CT Scan of my abdomen & pelvis. Those all came back ok…,except they noted that my uterus was mid to slightly retroverted…So he sent me to my gyno for a specialized pelvic ultrasound and evaluation for endometriosis. That was all alright…….he prescribed some pain pills and sent me on my way.
    This past Oct. I decided to have a hysterectomy……my Oncologist let me know that some of the pain that I’d been experiencing could be caused by the fibroids that I had….(No other gyno or tests had revealed that!!!) He did a pelvic & vaginal ultrasound and showed me them……so I was going in for a seperate surgery and decide to have the hysterectomy. It was one of the best things I’ve ever done in my life- no more bloating, lower back pain, etc!! So, my point being….what one Dr. doesn’t find another might……also you might want to look into the HPV test if you haven’t had one. FMS/CFS can be of all severities, some manage pretty good & are able to work. Others like me have a SEVERE case, I haven’t been able to work since May 2006. It has taken me a LONG time to find the right drs……..still even with strong pain pills I’ve suffered greatly, You know you have a BAD case when sometimes you can’t even make it to the Dr., because you just don’t feel well enough!! Too most people that statement would sound CRAZY, but to “our type” it is understandable.
    I hope you get some answers somewhere!! Sorry it took me forever to reply…………Andrea
  11. srs7874

    srs7874 New Member

    Thanks so much for taking the time to share. Your gyno symptoms certainly sound like mine! I have never had an irregular pap at all, an I am religious about getting them. I have had vulvar and endometrial biopsies which have revealed nothing. I do have a slightly enlarged uterus and it is tipped strangly. Maybe that is part of the problem. Why were you seeing an oncologist. Was that just for the hysterectomy?

    Back in 2006 I had a strange enlarged lymph node. I had extensive blood work which showed high epstein barr titers. The doctor said I must have recently had mono. I think I am going to have this test done again and see if they are still high. . . and maybe I have chronic mono????

    Sorry you are suffering so much. Like I said in my original post . . .I fear of what the future holds. Take care!!
  12. nixon

    nixon New Member

    I had one bad pap in 95, they did a colopscopy and everything was ok!
    I'm also religious about getting them. I guess the tipped uterus could be causing some of your gyno symptoms?? I'm not for sure though.
    I've also got high EBV titers......had those checked in 'o7, have never had them checked again.....most of my drs. weren't concerned with my results I had from the FFC.

    I go to a GYN/ONC. because of what the HPV has caused me. I was going in for a partial vulvectomy and my doc said we can go ahead and do a vaginal hysterectomy if I'd like, which like I said....it was GREAT for me, helped out with some of my FMS/CFS symptoms.

    At my drs. appointment Thursday she changed my pain meds, the last one I was on had quit working for me, also switched from Lyrica to Neurontin. So last night I was able to get almost 5 hrs. of sleep, and slowly my pain is getting under control.....I'm guessing by the next few days I should be feeling alot better.

    As I said earlier....I hope you get some relief....I know that the PMS type symptoms get really OLD !!! Take Care, Andrea
  13. nixon

    nixon New Member

    Thanks for posting The Natural Route!! I've read your posts re: Grape Seed extract, because I do have horrible sinus problems....I'm going to try it, I'll look in the past posts to figure out dosage! I was on thyroid meds. for awhile while going to the FFC....I didn't really notice a difference with that.

    I've also tried the crappy ADs, they really agrivate my TMJ, so I've vowed I'll NEVER let a dr. make me take those again!!

    I've been greatly debilitated by Levaquin this past month...will NEVER take that POISON again either!! I had an ENT who wanted to do sinus surgery on me, and I refused to go that route also(afraid it would mess me up even worse!)
    I've just started taking Vit D about 3-4 months ago, not really sure if I'm defecient, especially since I live around Las Vegas-we get tons of sun here, but I'm not outside everyday either....especially in the winter.

    As for the MSM- I tried it a few yrs. back, because it really helped my Dad, he's also got FMS/CFS. For me it seemed to make me really sick. My pharmacist just recently talked with me about it, and said to give it another try.....but I'm leary after being so sick from it before.

    I agree that alot of these drugs on the market are bad stuff, but right now I do take pain pills which greatly improve my life, the Neurontin (which I've had previously & just started again Thursday night) was 1st prescribed for post herpetic neuralgia- does help that burning pain, when nothing else I'd tried did any good) I also take a good vitamin, CoQ10, green tea supplement, magnesium, and I'm currently searching for a good Omega 3 (one that doesn't leave that fishy taste, as I hate fish & seafood) I've changed my diet before-cut out caffeine, etc,etc. I'm a true believer in the Natural side of life, but it wasn't taking care of my pain.
    I do appreciate you throwing your "25-cs" in there, it may help others out who aren't educated on that way of life!! I also use a netti pot for my sinuses, but should probably do it everday & I don't......massage also helps me greatly, but I can't afford to go enough to TRULY see benefit...(wish I could!!) Andrea

  14. srs7874

    srs7874 New Member

    Thanks for all the natural info. I am going to give some of it a try. My friend and her doctor husband are thinking about taking place in a vitamin D study. You prick your finger each month and they provide you with supplements and monitor you levels. I may consider participating in it too.

    I have also found that massage helps tremendously. My wonderful husband gave me a 45 minute lower back, butt and thigh massage on Thursday afternoon and I have felt a lot better since then.

    And yes . . . I will try not to worry about the future. I have a great life with a great family and need to remember that!