Does this sound like fibromyalgia?

Discussion in 'Fibromyalgia Main Forum' started by kennycaughlin, Dec 27, 2005.

  1. kennycaughlin

    kennycaughlin New Member

    Hi everyone,
    Once again this morning I woke up in so much pain I felt sick to my stomach (and like crying). My hips were on fire - with a real burning sensation, my shoulders are in a lot or pain, I am stiff all over and my lower back kills! I just had surgery a few days ago on my knee - and the post operative pain is a breeze compared to these fybromyalgia like symptoms!!! I have been told by 3 or 4 doctors that I have fibromyalgia - but I have always wondered "isn't that just a label the doctors use when they really don't know what is wrong with you"? I live EVERY single day in constant pain - especially first thing in the morning when I have this unbearable burning feeling in my hips and shoulders. As I mentioned - my back kills too - and my legs as well (and buttocks)......are these the symptoms of fibromyalgia? Please help me!!!! What can I do to help this pain? I just can't imagine living this way for the rest of my life! Help!!!
  2. KJH_10

    KJH_10 New Member

    Hello there,
    Your post just described me exactly. I have very similar symptoms as you do. I was diagnosed with fibro 2 years ago when I was only 19. I did not believe fibro could cause me all this pain, so every time I had a new symptom, I would call the doctor and get tests done. All tests came back the same-no problems. I can relate to the pain hurting badly in the back and legs, arms and back. I try to relax and take medicine. I can't take heavy painkillers like vicodin because I work and those medications knock me out, I stick to naproxen(aleve) 500mg 2x a day when the pain gets bad, this way I can still manage through the day. Your not alone....all your symptoms sound just like Fibromyalgia.
  3. gidgetsmom

    gidgetsmom New Member

    Sorry you have to go thru this, but you're in the right place. Have any of the doctors recommended antidepressants to you?? I take 50mg amitryptilene every night for sleep and it helps my pain alot too. I am one of the lucky ones that pain meds don't knock me out, so I take Lortab 3 times a day. I also take 10mg of flexeril (muscle relaxer) 3 times a day. Although none of these take away ALL of the pain, they do knock the edge off so that I can work!! Please get back in touch with your doctors and maybe they can help you get some relief!! You'll find great people here with many answers. You're not alone in this!!!
  4. kennycaughlin

    kennycaughlin New Member

    Hi everyone....thank you for your responses so far....I did try the anti depressants a few years ago and they did work a bit (reduced pain by about 35%) - but I went off them because they gave me terrible dry mouth and I speak for a living - which made my job very hard with dry mouth all the time. Now I am going to go back on them as I'd rather have dry mouth than this pain any day!

    Are there any natural remedies that help reduce the pain and symptoms? I tried the chiropractor for a few months and it did absolutely NOTHING. I tried working out and it did nothing either (other than tear the ligaments in my right knee causing me to need surgery). What about massage? Has this helped any of you? Is there anything I can try from the health food store - any natural remedies?
  5. PVLady

    PVLady New Member

    This does sound like fibromyalgia, a flare. One thing you might consider is your diet. Whenever I eat anything like ice cream or alot of sugar it would trigger a flare.

    Also, for many years I used to always "overdo" because I was in denial that I really had something wrong with me. After overdoing, I would always wake up sick like you are describing.

    It is my belief you CAN get better - I did. I was so sick for over ten years to the point I was housebound in and in bed all the time.

    A couple of years ago I came to this board and began my journey to "getting better". I am not going to say I am cured, or even recovered. But today I am not suffering at all. I do not have flares or pain even close to what I had before.

    It took alot of work on my part to get better. I HAD to learn to really take care of myself. For me that means many things.

    Eliminate as much stress as possible (including toxic people).

    Improve your diet - more protein, less carbs and sugar. Less caffeine, NO alcohol at all.

    Work on getting enough rest - if nighttime sleep is disturbed, take short naps during the day - but don't "live" on the couch or in bed. Sleep is and rest is critical for us. I took Ambien for a while to get back on track. (I no longer need it).

    Keep your mind involved in something your enjoy (indulge yourself). For me it was crocheting, crossword books, reading movie magazines etc.

    I also make a committment to my religion and I pray every day. I do believe I have experienced miracles through prayer.

    The very first thing that happened to help me get better was a doctor gave me a very strong pain med for about 9 months (MS Contin) - it is a long acting morphine. It completely eliminated my pain and enabled me to get active again.

    After 9 months I could not take it anymore because of stomach upset, etc. I went on a med called "Subutex" and have been on it since last May. Subutex is used for many things, but also for pain relief. It is much easier to stop than full blown opiates. In addition to Subutex I take a small amount of Ultram and Extra St. Tylenol.

    I remained active, no matter what. I am convinced if I ever allow myself to lay around during the day again, I will get sick again. That does not mean I overdo, but I get dressed each day and get out of the house. Even if that means I sit at a mall watching people for a couple of hours - but NO MORE isolating myself in the house. This DD can do that to us so easily.

    In the beginning, I would not have been helped by the meds I now take. After so many years of pain, it was like my body needed a serious intervention to stop the pain - so taking the MS Contin was the right thing at that time.

    Remember, and don't expect other people to understand what you are going through. They won't. Find the best doctor you can who understands fibro and will work with you on a "trial and error" basis to get your pain under control.

    You are the only one who can truly protect yourself and take control to get better. Don't let anyone make you feel guilty for not being able to do things they ask of you - (which you know will make you sick).

    Initially, if you are really bad, you may need Vicoden or try MS Contin. These drugs will free you from pain and help you get more active and have a better quality of life.

    The downside is they have side effect which you learn to deal with. (Constipation, tolerance, etc). Eventually, you can get off them, just as I did.

    Oh, I also discovered I have "gastric reflux" so getting treated for that has also helped me. I suggest everyone make sure to get a complete physical at least once a year and don't assume all your symptoms are from fibro. That can be dangerous.

    Have faith you can get better, many of us here have found our own ways to improve. Some have used Guaffinsen, supplements, etc. Whatever works for you is great.

    I am only telling you what worked for me. I had to learn to listen to my body. I knew when it was time to stop pain meds and I am so grateful I am better now.

    Use this board to come as much as possible. It is very good to "vent" and have a place to come where others are facing the same challenges.

    Sometimes you might be irritated here but remember the big picture - you want to get better and I believe we all can improve.

  6. elliespad

    elliespad Member

    Sad to say, it does sound alot like Fibro. If you want to try the natural route, here is what I use for pain and for sleep.

    1. DL-Phenylalanine - an amino acid found in any health food store, about $10. I take 2 in the a.m. and 2 more later around noon. Acts as a natural pain releiver. DL- Phenylalanine blocks the enzymes responsible for the breakdown of endorphins and enkephlins. Endorphins and enkephlins are a group of substances within the body that helps relieve pain. Endorphins are actually far more powerful than the drug known as morphine. Small cells throughout the nervous system, brain, spinal cord, and nerve endings are able to produce these morphine-like proteins.

    DL-Phenylalanine acts as an appetite suppressant and mild stimulant. Although, caution is advised for individuals with high blood pressure, DL-phenylalanine is an affective supplement in treating musculoskeletal pains, including those associated with FMS.

    2. L-Tyrosine - An amino acid, again, found in any health food store, about $10. I take 2 in the morning. Do not take later in the day at it may keep you awake.

    A non-essential amino acid, tyrosine can be made from other amino acids in the body and serves as one of the direct building blocks of several neurotransmitters and of thyroid hormones. All of these biochemical compounds are stimulants to your metabolism and nervous system. As with other amino acids, several vitamins and minerals enhance tyrosine's absorption into the body. Tyrosine has several effects in the body including mood enhancement, appetite suppression, and growth hormone stimulation. In addition, tyrosine is reported to have an antioxidant effect, which may protect people from cancer development, coronary heart disease, and aging.
    Sources: Natural sources include avocados, bananas, milk products, almonds, sesame and pumpkin seeds, and lima beans, but tyrosine can be made in the body from phenylalanine, another amino acid that is readily available from meats, poultry and nuts.
    Deficiency symptoms and illnesses: Low levels have been associated with hypothyroidism (low thyroid function), low body temperature, low blood pressure, and depression.
    Effects on the body: Helps control appetite, useful in alleviating symptoms of depression and anxiety.
    Use in weight control: Acts as a mild appetite suppressant and enhances growth hormone production.
    Possible adverse effects: In sensitive individuals or with very high dosages, tyrosine can cause headaches, irritability, nervousness and sleeplessness. Tyrosine may elevate blood pressure and should not be used with over-the-counter dietary medications. Since tyrosine affects brain neurotransmitters, it should not be used with MAO inhibitor antidepressant medications.
    Usual dose: 1 capsule in the morning on an empty stomach.

    3. L-Tryptophan, my all time favorite Amino Acid for sleep, depression and anxiety. Use up to 500 mg, per 50 lbs of body weight. (I use 1500 mg. at night) even though I weigh more. Must take with B-6 so Seratonin is produced in the brain and not the intestines. Take this, and ALL Amino Acids away from other protein, as they will compete for uptatke in the brain. Hard to find in health food stores, usually order mine online. I would not recommend Doctors' Best, as it has not performed will for me. Brands I have used and recommend include: Litdke, BIOS, CRAIG, will cost about $35 - $50 at the dose that I take.

    3. GABA- for sleep. I recently started using this as prescribed by the FFC. Works GREAT for getting sounder sleep. Pretty cheap, around $10-20.

    Good luck and please comment if you find the DL-Phenylalanine and Tryosine help your pain. I see results the first day I take them and continues to improve with use.
  7. Bet2

    Bet2 New Member


    I just want to share what helps me.

    Diet (I would go into the search engine and type that word; lots of valuable information on there) I have eliminated gluten, sugar(poison), caffeine, alcohol, and very limited dairy. You will not see results overnite but you will start to see results with a healthier approach to eating.

    Excercise-nothing very stressfull. Walking or swimming and stretching is good.

    Accupuncture--Time consuming but very helpful

    Herbs- Your accupuncturist can help you with these depending on what your problems are.

    Magnesium--Very very helpful; most people on this board take it; for some reason we seem to be deficient in that.

    Massage--Great if you can afford it. That's a bit of a luxury for me and you have to find someone who understands your issues and doesn't kill you on the table pressing too hard.

    Medicine--I don't go to a regular doctor because I don't want to take all the drugs that they throw at me (my own personal decision) but I do take motrin (800mg) and robaxin (muscle relaxer when I get too bad). I'm not very good with drugs so I try to limit as much as possible. Sometimes I just can't.

    Research--Get some books and use this board as much as you can. These people have been there and done that and have helped me so much. One of the girls has a shake on here that is wonderful and another has a bath with epson salts and perioxide (go figure), but there is just so much useful information on here.

    I hope that this helps. If I think of anything else I will pop back in on ya.

    God Bless You,


    [This Message was Edited on 12/27/2005]
  8. lovethesun

    lovethesun New Member

    If several doctors say you have fibromyalgia you do.

    It isn't just a wastebasket diagnosis.I have a severe case of fibro.WE have too little serotonin in our brains also not enough trytophan.We also have elevated levels of substance P in our spinal cord.

    Several studies are coming out to say it is a real problem.It is also recognized by SS.If you acknowledge that you have it,you can take steps to handle it.Linda
  9. karatelady52

    karatelady52 New Member

    You might want to get proactive like many on this board have and find a doctor or center who will test you for bacteria, viruses and toxins which can be the root cause of FM/CFS.

    Many are going to the Fibromyalgia and Fatigue Centers and after extensive blood work find they have underlying causes such as lyme disease (my case), Epstein-Barr, CMV, Chlymydia Pneumonis virus and others.

    If you do a search on FFC you will find a lot of this information.

    Like you, I just couldn't imagine living like this for the rest of my life. I go to the FFC in Atlanta and have met people who fly in as far as the Caymen Islands for treatment.

    I now have hope that my treatment for lyme and 3 viruses will eventually get me well. There are others on this board who are at different stages of getting well and some who are almost completely well.

  10. tandy

    tandy New Member

    and I'm no rookie to this.
    I've been DX with Fibro for over 12 yrs.
    Everything you mention I have.
    Sometimes worse than others but mostly pretty bad.
    I lost my job to this DD.

    Briefly,.. I can only suggest to remain in touch with others who relate. It helps to share info,,and just to be understood. The hot epsom salt baths are very relaxing. Get plenty of sleep at night. If you have trouble with sleep,...try Melatonin (after some research)
    It helps me alot.

    And always pace yourself.
    Even small chores FEEL like huge ones the day after.
    We pay tenfold with body aches.
    Yet we walk a thin line because I notice if I'm too inactive for awhile,..I'll ache more too.

    Try to eat better,...
    and Magnesium as mentioned before me,..Is very important.
    I guess I was'nt so brief afterall~
    Welcome and glad to meet you~

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