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    My newbie story
    Shanniebump posted:
    I don't have an official diagnosis yet but it seems I'm being treated for fibromyalgia. My very first symptom began in January 2012 with numbness and tingling in the soles of my feet. It was and still is excruciating. My GP did some blood work and after coming back normal, referred me to a neurologist. He did an EMG, which also came back normal. Later on, after experiencing some headaches and dizziness, neck pain/stiffness he scheduled an MRI of brain and neck. Normal. He did some more extensive blood work, which showed a positive or high rheumatoid factor. So then, off to the rheumatologist! He did some x rays, blood work, and urine test which all came back normal. Then came the irritated, red eyes. Off th the ophthalmologist! Diagnosed with dry eyes and began Restasis immediately. Mouth was also becoming very dry. Yuck! Next was the ENT for ringing and pulsing in my ears. All tests were normal (I was beginning to hate this word "normal"). I was prescribed Nasonex for post nasal drip. At next rheumy appt, my right ankle/foot was extremely swollen. He said it was tendinitis and gave me a shot to help reduce swelling. I began to have some issues with stomach bloating after eating/drinking anything. Sometimes it was so bad, I looked pregnant. I bought special flowy shirts to help hide this embarrassment. When I mentioned this to my rheumy, he referred me to a gastro Dr. I cancelled the appt because I didn't want to add another Dr to the list. I had recently quit my stressful job and I didn't want to add more financial stress. More symptoms began to emerge......joint/muscle pain, weakness, numbness/tingling in arms and hands, trouble thinking and concentrating, dizziness, fatigue, shortness of breath, etc (that's all I can think of right now) lol! After a few more appt's with the rheumy, he prescribed Lyrica for what he said was "unexplainable" pain. He has upped the dosage once & I've been taking 150 mg a day for @ 8 months. It has helped some with the pain but not at all with the numbness and tingling. I still have shooting pain throughout my arms and hands and muscle pain and weakness. My hands go completely numb when I use them or hold something. So many frustrating syymptoms to deal with, ugh! Rheumy says he doesn't want to put a "label" on my symptoms but wants to see me every 12 weeks so we can catch "this" early. What is "this"???? I just had punctal plugs put in my lower ducts yesterday as the Restasis wasnt doing enough. I'm hoping they provide more relief. So this is my story. I don't really talk to anyone about all this, not even my hubby. No one likes a complainer!! However, this site provides a means for release and it feels good! I'd love to hear your thoughts, advice, similarities. Thanks for listening! <3 <3
    dollbug responded:
    Hello Shannie and welcome....MiMi in are dealing with a lot of *medical issues* right now...and this is common for some of us FMers....I am sure though that you will find *tools* that will help you cope better....but it does take time and effort to figure out just what might work for hang in there.

    I have to ask....did your doctor check your Vitamin D level yet? If NOT, then perhaps you might speak to him about this and ask him to check it. Low Vitamin D can cause some people to have *additional pain* and it can also affect other illnesses as well. It is a *simple blood test* BUT you must ASK the doctor to run it....(I do NOT think the doctors have all caught on to the *tip* yet).

    I got sick back in late 2003 with problems with my right hand....(turned out to be carpal tunnel, after months of PT and taking medicines which did not help) thing lead to another and so on. I had multiple illnesses too but the doctor seemed to think that I was *just depressed*....and that was all he treated me for....I eventually had to do my own research and I found out that I also had a parathyroid problem too and very low Vitamin D. I have also had other issues....sinus and eye allergies...since 2004 I had 7 hand surgeries, (2 of which I fell outside and broke each wrist, but not at the same time, thank GOD)...the other hand surgeries were carpal tunnel. Only after I broke my wrist did I finally get some relief from my hand pain. I also had right elbow surgery...parathyroid surgery, cervical (neck) surgery and my 4th right knee surgery. But I am so much better now than I have been. I have learned how to *control my FM pain by taking vitamins and supplements and doing other things....I am still having issues with Chronic fatigue....still trying to find something that will help that.

    A few months ago I discovered that taking P5P fixed my lower back pain....the doctors I went to could NOT find anything causing my pain. It was quite interesting just how I found out about daughter heard a doctor on Fox Channel talking about Morton's toes...(I have this on both feet)...and my daughter called me to tell me that she thought I needed to *try* the P5P....I did and was totally SHOCKED beyond belief that it worked. I now take 1 a day...P5P is a processed form of Vitamin B 6 for people who have issues processing it. I guess I *fit* into this group.

    OK...I do not know how old you are but I hope that you have applied for your SS Disability. If not, then perhaps you need to talk to your doctor about doing so to see if your doctor will stand behind you on this.

    I am sure you will learn a lot sure and check out the info under *tips* and *resources* and be sure and read the *member toolbox*.

    It is important to learn how to pace, pace and pace even more.....and try to limit your stress, if you can. Stress and the wrath of the dragon, aka FM, feed off of each other.

    Try to get enough sleep and rest when you can. You have to learn to take care of yourself. This is really important.

    We are here to hear you and we understand what you are going through. I hope you will post often, ask questions, make comments and/or suggestions. We care.

    Take care and good luck.


    booch007 responded:
    Good Morning Shannie,

    This is a tough one. We are all so different and the feelings and issues we present could drive you wild! To the right in resources is a MEMBERS TOOLBOX that I wrote a long time ago. It is filled with statements and the things that helped others.

    I still use more non medical tools to be better then i do meds.

    One thing that changed me alot was drinking water...lots of water and that was it. I was so dehydrated and didn't know it. I had little metabolic crystals in my feet....when I went for a massage it was so painful, after a year of hydration they were almost gone and so was the glasslike feeling to walk in the morning. That doctor also added a green diet. Meat chicken and fish with all the greens I could find as they are loaded with antioxidants. I paid alot of money for this information and it was still worth it as I see it now. He had me using a product called green vibrance too (yuck...but I did it).

    In my past 15 years I have tried anything to get better or not progress more in this fight.

    Lucky am I to have a great doctor and we work well together to keep me dancing. I am a nurse and I have about a 8-10 hour wellness window that I have carved out. I must be aware of muscle groups and posture but I can be me still. For my feet I still change to a different shoe everyday to use a different pitch to the leg and arch....see always thinking.

    This is not a lay down and rest disease. If it is FM you need boxing gloves and a fighting attitude. Don't let it get more from you. Get educated as well.
    There is a book I love to talk about " FM and CHRONIC MYOFASCIAL PAIN by Dr Devin Starlanyl. I got mine from It is priceles for help in this mess we are in. She has a new book coming out about wellness with trigger point injections. THIS IS THE THERAPY I HAVE CHOSEN.

    I go for injections every 2 weeks and it helps me so much. It was not an easy start and I still say it is not for the weak. But the other side of the coin is awful too. I seize up and the muscle of my throat choke many doctors and years of trying to find out what was wrong...I hear you with the "normal" at the end of each testing. I cried a few times...(I saw 9 MD's before diagnosis)

    My hands were numb and burning and I couldn't do B/P's in the ICU. The EMG normal. Well the reason for the symptom as I KNOW NOW, was entrapment of the nerve beds in the anterior and posterior part of the arm pit. That area is injected (like accupuncture) and the muscles release and relax and I am symptom free. It is 13 years of trigger point injections every 2 weeks...(too bad the muscles don't stay fixed)

    They wrote and now it is published a paper including me and was presented at a neurology conference in Canada.

    This is my choice to use injections and I also chose to be with Neurlogy as so much was nerve based symptoms. Now it seems they are thinking this is a brain chemistry neuro issue anyway (ahead of my time). I am just so glad I met a doctor who *knew* WTH I was talking about. For every symptom I presented she told me WHY. P R I C E L E S S...I cried.

    So, she then sent me here and I have never left. This is the toughest challenge I have been given and I fight with it eachday. Glad you found the site and please stay and post you story, issues, questions, a silly moment...a joke*. We are open 24/7...and free what is better thean that!

    Welcome, welcome....Nancy B
    franr responded:
    Hi Shamie
    So sorry you are going through this. But as Mimi said one symptom leads to another. I also went through something similar this past winter.It seems I could never get a diagnosis.And one GI said I needed a psychiatrist.I change to a medical center and they found out what was wrong .I already was diagnosed with fibro 20 years ago.So don't give up. Please buy Dr Devlin Staryln's book. They are my bibles. They got me through this recent flare up .And they will help you understand this illness.Let us know how you are doing. Good Luck....Fran
    bette_kaffitz responded:

    FM is so much of a mystery yet. I think it is in the stage that MS was in back in the 60's. It took a spinal tap to diagnose MS at that time. There were still doctors who "didn't believe in it" back then.

    Here it is 2013. MS is diagnosed by MRI which clearly shows lesions on the brain as white areas. Functional MRI shows areas in OUR brains that react differently from healthy controls in many ways. Our spinal fluid has too many excitatory compounds and not enough calming ones. Of course, most hospitals do not have fMRI machines, and a spinal tap is far from standard diagnostic procedure.

    The multiple symptoms you describe are mentioned in Dr. Starlanyl's books. I think she includes all the ones you mentioned. It has taken me over 40 years to rack up that many diverse symptoms. They come and go in bewildering ways. You never know from one day to the next what will turn up; you just know there will be something somewhere in your body.

    Because of the many types of symptoms you will encounter, you will probably need different medications at different times. One of the best things you can do for yourself right now is to decide on ONE of your many doctors who will be your main source and first go-to person. You need someone who you can trust and who will trust you and your honest recital of what is happening in your body. That one doctor can refer you to whatever specialists you may need at that time, but ONE doctor has to have the big picture and care for you, not your feet, or your eyes, or your hands.

    Call this special doctor your insurance policy, your confidant, your conductor. Be sure she/he gets copies of any tests you have done and reports from any specialists you see.

    And remember, YOU are in charge of all of this. You decide if a treatment is helping. You decide whether any side effects are too much for you to live with. You have to weigh the risk to gain ratio of any procedure from a simple blood test to a major surgery. It's your body and your life.

    solongsotired responded:
    Your story is OH so the same as mine. you're right nobody likes a complainer, but what is even worse is since the dr's can't findanything after you have been picked, poked, stabbed, and they can't find anything, and since fm is not something you can see,people don't understand the magnitude of it all, and the toll it takes on one that feels it.. I wish every dr I have ever seen could feel what I feel , just for a few hours,
    Shanniebump replied to dollbug's response:
    Thank you Mimi for your response and information! Sounds like you have been going through quite the ordeal too. Do you have any other diagnoses along with your fibro? I think my Dr suspects an autoimmune disease but he won't come out and say it. Most likely Sjogrens Syndrome and/or Rheumatoid arthritis. At my most recent appt, he prescribed a med to help me produce more saliva to help me eat and speak. The eye/mouth dryness goes right along with the Sjogrens but I've also heard that its a symptom of fibro and many other autoimmune diseases. Do you have these symptoms?

    In response to your question, I turned 40 in January of this year. I am completely healthy other than this crazy bundle of painful/annoying symptoms. I enjoy working out & use it often to combat depression rather than taking antidepressants. I still feel down sometimes but just continue going through the motions until it eases up.

    I think my Dr has checked my vitamin D but I will definitely ask at my next appt. Is that something that needs to be checked frequently? I know we're doing a lot of bloodwork at my next visit, as he's asked me to fast. Thanks for the tip!

    So sorry that you are having to deal with all your medical issues but I've enjoyed hearing your story and having someone to talk to about mine. Not sure if I would qualify for disability and I don't think it's something my Dr would be behind me on. He has that "just deal with it" attitude, like it's no big deal. He's not very encouraging or understanding. My last appt lasted @ 10 minutes and he basically pushed me out the door. I didn't get a chance to discuss my notes or ask all the questions I wanted to ask.

    It's another dreary day here in Ga. Doesn't help with the blues but I'm pushing forward! Thanks again for your reply & your advice! Hope you have a great day!

    Shanniebump replied to booch007's response:
    Thanks Nancy for your reply! I'm so glad you have a great Dr and have found what works for you. I've never heard of this injection therapy. Did you try any oral meds (like Lyrica, etc) first? So far that's all my Dr has suggested. Does insurance cover it?

    I'm suspected of having some autoimmune issues, most likely Sjogrens syndrome and/or rheumatoid arthritis. I have extremely dry eyes and mouth, skin & hair too. Do you have these issues as well? They say fibro goes hand in hand with some of these diseases.

    I wish I had a Dr like yours who explains everything to you cause mine could care less if I understood. He practically pushes me out of the room before I can finish going over my notes/questions.

    Thanks again for listening and sharing your story with me. I'm gonna look for that book you suggested. Hope you have a fabulous day!

    Shanniebump replied to franr's response:
    Thanks Fran for your reply! I'm sorry for you as well for having to deal with this mystery. How long did it take you to be diagnosed & what was the smoking gun? As I've said, my Dr won't even say that I have it yet but is treating my symptoms as if I do. So confusing and frustrating! I think he does suspect an autoimmune disease as well but waiting for something to show up in my blood. Problem is, you have to be having a flare in order to catch it. Seems autoimmune issues goes hand in hand with fibro in many cases. Has your fibro progressed in the 20 yrs that you've had it? I'm not sure if it's a progressive disease, but I hope not! Definitely gonna read the book you all have suggested!

    Thanks again & have a great day!


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