Newly Diagnosed and Need Some Help

Discussion in 'Fibromyalgia Main Forum' started by Keylee, Nov 5, 2008.

  1. Keylee

    Keylee New Member

    Hi, I'm new to this site and to FM. A doctor just diagnosed me last Thursday. I'll give a little medical background first. About 4-5 years ago, I started seeing a neurologist for leg, back, neck pain. He did multiple MRIs and I have seen two other neurologists for second opinions to confirm that I do not have MS. I have seen a specialist to rule out Lupus. He decided to put me on Requip for RLS. The pain has still existed and I have complained to doctors and my family. I have always felt that something was wrong but no one believed me or just blew it off as I am exaggerating.

    Well last Sunday my finger started to hurt randomly. I don’t recall any injury to it. So I figured whatever. By Tuesday, it was swollen. So I made an appt to see the doctor. She claims its arthritis but just in case lets do an x-ray to make sure it’s not broken. So I went home after the x-ray and awaited results. She calls and says Surprise it’s broken. I go to the orthopedic the next day and SURPRISE, it’s not broken, he thinks its arthritis. I go back to my PCP who is unavailable and I see another doctor who speaks with me and does a pressure point test and says ITS NOT arthritis. So at this point, I’m like what the *#*^? Can someone tell me what the heck it is? She says I have 9 out of the 11 pressure points. She tells me she believes I have Fibromyaglia.

    Well I have heard of this but didn't really know what it was. I started researching it on the internet. And while I have many of the symptoms. I don't necessarily have the same characteristics as being described.

    I just want to hear from people who do suffer from FM and have them tell me this sounds like me. I have these symptoms too. You would know better than any doctor could ever tell me. So here goes:

    I am 28 years old. My lower back always aches. About two months ago, my neck started to crack and feel very tight. I don't know if this is a progression of the disease. I have migraines, I get dizziness with a good amount of "feeling out of" (not sure how to describe this feeling). My legs have a sharp pain with a burning sensation that runs from the knee down to the ankle (on the calf). Randomly I have ringing in my ears. During my period (which is often irregular) I have major mood swings. I am always cold and sensitive to medications. The fatigue I experience does not prevent me from working or doing whatever I want. However, the fatigue makes me want to sleep alot. I just work through it. I don't let it stop me even though sometimes it can dampen my day and make me just WANT TO SLEEP!!!! Even if I get 8-9 hours of sleep a night. I have trouble remembering what happened last week, let alone having only a handful of childhood memories. (Which could be from my difficult childhood). I have severe allergies (I pop my jaw alot). I get these sharp stabbing pains in my chest, arms, ankles, and random locations. And there are probably others I can't think of.

    Thanks for your responses
  2. Keylee

    Keylee New Member

    I was tested for Lupus because one of my blood tests came back positive for the ANA but further testing and a trip to New England Medical Center proved that I did not have Lupus. Blood work was taken and showed that I had normal levels so it ruled out Thyroid. I guess the only thing that really hasn't been ruled out completely is arthritis. However, I work with someone who has RA and her issues do not seem to match mine. This is the first swelling I have experienced.

    She put me on amitriplyine and have to go back and see her in a month. She is accessing my medical history from my neurologist to see what testing has been completed and if I need to have any further testing. I need to find a doctor who knows how to help me.

    Does anyone know a doctor in MA that can help me?
  3. BeansMom

    BeansMom New Member

    Hi Keylee! My story is sort of like yours - I am 28 also and my problems started as a child, well, like middle school age. Always having "growing pains" and Restless legs. My mom and grandma had restless legs (no such thing as RLS then!) and I figured it was just a genetic thing. I've always had allergies.
    High school went normally and the first part of college - I was fine. Then my last two years of college I began having a lot of problems with my feet - plantar fascitis. I was having trouble sleeping and feeling refreshed, more RLS problems, and achiness. Always getting sick and feeling "out of it." The past 3-4 years have been horrible. I was diagnosed with endometriosis (seems to be "common" in fibro patients) and had surgery for that. About that same time, I started having severe lower back and hip pain that impacted my legs as well. Then it seemed my whole body was seizing on me, I was getting lumps of muscular knots in my legs, arms and back. Tired is an understatement - I am EXHAUSTED daily and find sometimes getting dressed for work puts me out. It takes everything I have to get out of bed everyday and go to work...and I like my job :)
    MRI's, xrays, orthopedists, physical therapy, TENS units, steroids, steroid shots, nerve blocks, SI joint injections, RF nerve ablation, neurologists, and pain specilists....nothing helped much.
    Finally, my PCP referred me to a Rheumatologist who I just saw 3 weeks ago. He confirmed it was fibro and put me on Cymbalta. I think I am feeling less fatigued this week and have had alittle pain relief. Too soon to tell. I tried Pamelor, Neurontin, muscle relaxers, and Lyrica. I still take Tramadol daily for pain relief and muscle relaxers occasionally. I used to take Requip for RLS, but my Rheum told me to get off of it and just do the Cymbalta.

    I, like you, have little childhood memories - which, like you, was maybe that's a good thing! I've heard there is a relationship between trauma (either physical or emotional) to fibro. Maybe my difficult childhood somehow affected my brain to have Fibro?? who knows?
    All I know is the best thing to do is READ, READ, READ. Be knowledgeable, make sure you dr talks to you like a person and not talking down to you. Get enough sleep and always take it easy...just b/c you feel good don't push will pay for it later!!
    Obviously no one here can diagnose you - but read up on the symptoms and take care of yourself. It's a bugger, but doesn't have to take over your life. You are you, you are NOT fibromyalgia.
  4. 2sic2mooov

    2sic2mooov New Member

    Just wanted to say PUSH your docs for testing. My mistake over 7 years ago was to just quietly nod and accept what docs did. All those newly diagnosed will see on the boards that testing has to be done to rule out other diseases or conditions that can be helped with treatment or medications. Even those with this disease for years still have to be very proactive and push for the help they deserve.

    I am in my forties and have lots of issues with cycle, but you are SO young. I would want to know why you have issues with this. I never did until the past few years which is so-called normal.

    All the other symtoms are the same that most of us deal with. I know I was really dx with CFS because the fatigue, cognitive problems, and ringing in ears along with severe headaches were the first symptoms I had after a killer flu. After this I started having lots of pain and just the past year have developed swelling in joints and something one urgent care doc called "migratory arthritis". The other symtoms you listed can come and go or may be there all the time. For me the biggest is the fatigue (which is really complete exhaustion EVERY day) and the cognitive stuff, dizzyness, ear ringing and really messed up sleep disorder. I also tested about 10 very sore pressure points, but pain is really bad in the upper leg (even more so when I have my period) and back and calves. I know this is not from activity as I hardly am able to do anything. Very sensitive to cold and very sluggish metabolism.I have been to ER many times thinking the stabbing pain in chest is heart related. Even though my heart "jiggles" around and get palpitations, they say is normal.
    I would just say to keep a list of what symtoms you have--like journaling daily. As a newly diagnosed patient, you will want to stay on top of your health care and reallly stand up for yourself. You should always take someone with you to appointments considering we have lots of memory and cognitive issues. That support person can inform doc about things you might forget.
    About the childhood thing....I too have issues with this. You know docs will want to explain alot of this as "in our heads" so if you have coverage for mental health, it is not a bad idea to go seek therapy if you haven't already. We know this is a physical disease, but it sure can't hurt to seek mental health care and there is nothing wrong with this help. For me, I have learned I need therapy just BECAUSE of this disease, considering all the changes it has forced in my life and what it has robbed me of. The fear that the disease and its symtoms create will often have us seeking help in this department. It has been helping me loads!
    Please take care of you because no one else can do it better!
  5. Jupiter7

    Jupiter7 New Member

    Please look into Lyme disease and other tick-borne diseases (co-infections). Many of your symptoms sound like Lyme--especially the crackly neck, dizziness, ear ringing, joint pains and fatigue. You don't always get a classic bulls-eye rash, and many people don't recall being bitten by a tick.

    I am one of the people here who was diagnosed with FM/CFS after seeing many doctors. I tried all the antidepressants they wanted me to take. Other than bad side effects, I found no relief. My PCP tested me for Lyme 5 years ago, and it was negative. Much later, I found out that the Elisa test for Lyme is extremely unreliable.

    Take a look at the Lyme Message Board, and look into how to get a Western Blot test. Even they are not completely reliable, but it is a start. The earlier you start treatment, the better.

    Now that I'm being treated by a knowledgeable Lyme Literate MD (LLMD), I feel I'm on the road to recovery.
  6. Keylee

    Keylee New Member


    So I had a scheduled appointment with a doctor that was listed on the RLS organization website. When I went to see him and explain what has been going on and gave him a copy of my medical records and MRIs. He said he doesn't believe that I have RLS. He thinks I could have Lyme Disease. So I am having bloodwork done this week. So if this comes back negative does this mean I could still have Lyme? Should I make him repeat it or move onto the other diagnosis of Fibromyaglia?
  7. loto

    loto Member

    Hi Keylee. I was just diagnosed about 6 months ago. I experience many of the things you described. Everyone experiences different symptoms, but many are the same! I have a terrible memory. It's called "fibro fog". I have pain in many places you have. My periods are total hell! My problems seemed to start a few years ago when I began having lower back and pain down my left leg. My lower leg and ankle swelled up. So, I went for that, and eventually found out I had a severe herniated disc. I lived with it till I couldn't take the pain anymore, and some days could barely walk. I had microdiskectomy, and it helped tremendously. Anyway, long story short, it seems after that I would have random aches and pains, and more and more weird symptoms. I would go to the doctor for one thing, and not report another, or put all the symptoms together. That all stopped when I had terrible shooting pain in my left eye. I know someone with MS who told me I should go get checked for that. Then, when I began doing research on MS on the internet I discovered that I had symptoms of fibromyalgia. I had MRI of my brain to rule out MS, thank goodness. So here I am now - officially diagnosed with Fibromyalgia. I was really glad when I got that diagnosis, because then I knew there was really something wrong with me! It wasn't just my imagination, I wasn't a hypochondriac! So, I, fortunately found that Cymbalta and Vicodin help me. I still hold my job. I do have worse days than others, and found out that sometimes fibromyalgia symptoms can "disappear", but will show up again!!! I'm told it doesn't progress, but people can have relapses. So, hang in there, you're not alone!!!!!! I'm glad I found this website for all the support!! IT's the BEST site on the internet!!!!
    Take Care,