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fibromyalgia?

goldencurlygoldencurly Posts: 2,385Registered Users
Anyone here have fibromyalgia?

I was diagnosed several years ago and although I am relieved to know there is something wrong with me and not just me being insane (what normal person admits out loud that everything hurts every day???)

I get just fed up and frustrated with it. I would just love to wake up one day and feel rested and okay and not be in pain. Grrrr.
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Comments

  • juanabjuanab Posts: 4,037Registered Users
    I have Rheumatoid Autoimmune Disease and Fibromyalgia. I understand how you feel. It does get to be frustrating at times.

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    LI - KCKT mixed w/ SM C & H Curl & Style Milk
    DC - NG Mango & Coconut H2O or Chamomile/Brdck Root
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  • goldencurlygoldencurly Posts: 2,385Registered Users
    juanab wrote: »
    I have Rheumatoid Autoimmune Disease and Fibromyalgia. I understand how you feel. It does get to be frustrating at times.

    I am so sorry you have RAD and FM. But thank you for understanding.

    Sometimes I feel like I'm all alone in my head with this! Especially when someone asks me, "Why don't you just take ________ ?" Insert latest FM prescription medication into that blank and say it in a condescending voice like I am too stupid to take care of myself.

    I have tried Cymbalta with no relief whatsoever and it actually made my insomnia worse! I took Lyrica for over a year and the side effects were not worth the relief that deminished over time. It took a long, miserable 4 months to wean off of it and I will hopefully never get it in my system again.

    I try to eat healthy and take supplements of B vitamins, magnesium, potassium, bromelain, fish oil, flax seed oil, some other anti-inflammatory thing I cannot recall the name of along with the regular daily vitamin/mineral and calcium. I feel like a walking science experiment some days.
  • juanabjuanab Posts: 4,037Registered Users
    juanab wrote: »
    I have Rheumatoid Autoimmune Disease and Fibromyalgia. I understand how you feel. It does get to be frustrating at times.

    I am so sorry you have RAD and FM. But thank you for understanding.

    Sometimes I feel like I'm all alone in my head with this! Especially when someone asks me, "Why don't you just take ________ ?" Insert latest FM prescription medication into that blank and say it in a condescending voice like I am too stupid to take care of myself.

    I have tried Cymbalta with no relief whatsoever and it actually made my insomnia worse! I took Lyrica for over a year and the side effects were not worth the relief that deminished over time. It took a long, miserable 4 months to wean off of it and I will hopefully never get it in my system again.

    I try to eat healthy and take supplements of B vitamins, magnesium, potassium, bromelain, fish oil, flax seed oil, some other anti-inflammatory thing I cannot recall the name of along with the regular daily vitamin/mineral and calcium. I feel like a walking science experiment some days.

    I am sorry you are suffering from FM. I can relate to what you are saying about being told by others to take whatever medication is being touted as if it is a cure. I am thankful my family and friends have not done that. I take issue with those commercials. They make it seem that just have to pop a pill and you are good as new. If it were that easy, you and I wouldn't be talking about it right now. I have taken Savella, Cymbalta and Lyrica. Either they didn't work or they made me extremely sick. I can't take any anti-inflammatory medication due to kidney disease caused by an interaction with Celebrex and another med I had to take for the RAD.

    texture - medium/fine, porosity - low/normal, elasticity - normal
    co-wash - NaturelleGrow Coconut Water or Marshmallow Root, Slippery Elm Bark & Blue Malva Cleansing Conditioners
    LI - KCKT mixed w/ SM C & H Curl & Style Milk
    DC - NG Mango & Coconut H2O or Chamomile/Brdck Root
    Gel - SM souffle (winter), KCCC (summer) or CR Naturals Aloe Whipped Butter Gel (year round)
    Sealers - Virgin Coconut Oil, Avocado butter, Aloe butter
    Ayurvedic treatments - Jamila Henna, Sukesh, Aloe Vera Powder, Hibiscus Powder
    .


    event.png
  • Jess the MessJess the Mess Posts: 5,844Registered Users
    My mom suffers from FM. It's hard because most people don't even recognize it as a disease. She keeps it under control (as best she can) by also treating her Candida. I'll ask her for her sources tomorrow.


    My fat thumb will make mistakes.
    High Priestess JessMess, follower of the Goddess of the Coiling Way and Confiscator of Concoctions in the Order of the Curly Crusaders

  • goldencurlygoldencurly Posts: 2,385Registered Users
    juanab wrote: »
    They make it seem that just have to pop a pill and you are good as new. If it were that easy, you and I wouldn't be talking about it right now. I have taken Savella, Cymbalta and Lyrica. Either they didn't work or they made me extremely sick. I can't take any anti-inflammatory medication due to kidney disease caused by an interaction with Celebrex and another med I had to take for the RAD.

    All the treatments for FM only treat the pain and they are not very successful with that. There's nothing for the insomnia, forgetfulness, spaciness, stiffness, swelling, speech and language difficulties, cold intolerance and never ending fatigue. Even when I do sleep, I don't wake up rested.

    If and when I ever have a good day, it's so easy for me to over-do and then have rebound symptoms for day on end afterwards. That's my biggest challenge is figuring out my limits when I am doing well so the next week or so aren't absolutely miserable.
  • goldencurlygoldencurly Posts: 2,385Registered Users
    My mom suffers from FM. It's hard because most people don't even recognize it as a disease. She keeps it under control (as best she can) by also treating her Candida. I'll ask her for her sources tomorrow.


    My fat thumb will make mistakes.

    Any and all info is appreciated! Thank you!
  • spring1onuspring1onu Posts: 16,528Registered Users
    insomnia, forgetfulness, spaciness, stiffness, swelling, speech and language difficulties, cold intolerance and never ending fatigue. Even when I do sleep, I don't wake up rested.

    If and when I ever have a good day, it's so easy for me to over-do and then have rebound symptoms for day on end afterwards.

    Well, I could have written that right there, but I always attributed feeling like this to my thyroid problem, even though my endocrinologist has adjusted my medication to death and I still feel the same. I know these symptoms could be a lot of things, but I put off going to the Dr. because since moving I hate the thought of searching for one and of going in and giving them my laundry list of how crappy I feel, I just envision them looking at me like I'm nuts. :lol:

    Interesting thread.
    [SIGPIC][/SIGPIC]

    spring-smiley.gif?1292867680

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  • goldencurlygoldencurly Posts: 2,385Registered Users
    spring1onu wrote: »
    insomnia, forgetfulness, spaciness, stiffness, swelling, speech and language difficulties, cold intolerance and never ending fatigue. Even when I do sleep, I don't wake up rested.

    If and when I ever have a good day, it's so easy for me to over-do and then have rebound symptoms for day on end afterwards.

    Well, I could have written that right there, but I always attributed feeling like this to my thyroid problem, even though my endocrinologist has adjusted my medication to death and I still feel the same. I know these symptoms could be a lot of things, but I put off going to the Dr. because since moving I hate the thought of searching for one and of going in and giving them my laundry list of how crappy I feel, I just envision them looking at me like I'm nuts. :lol:

    Interesting thread.

    Everyone thought I was nuts except my husband. He met me back when I was healthy and he could see how I had changed over the years. My biggest fear was being told it was all in my head and I needed an anti-depressant. I've been depressed; I've been on anti-depressants. I knew this was different. Hugely different.

    I went to the doctor several times and they always focused on the fatigue side of my complaints and I was given sleep aids, none of which worked for me. I was advised to eat right and exercise. I do eat pretty healthy. I do yoga everyday and walk 3-4 days a week.

    I finally got a diagnosis because I fell over a 3 foot high retaining wall and landed on concrete. My elbow was the first thing that hit. It was a sharp intense pain at first but then in a few minutes it was just a horrible ache like the rest of me. So I just cleaned it up and actually went to dinner with my husband immediately afterwards. I just kept going with my daily routine for many days. A couple of weeks later I got pneumonia (unrelated to the fall) and was sent for a chest x-ray. I was standing there in the hospital gown and my doctor walked into the room and saw the dark bruise that covered my entire elbow and where it had spread down the back of my forearm. She insisted it be x-rayed as well. I had a "celery" break. The bone that runs from the pinky side of my hand up to my elbow was broken long-ways starting at the elbow joint and down about 3.5 inches from the elbow. She FREAKED OUT. How could I not know it was broken????? Because after the intial sharp pain was over, it didn't hurt any worse than the rest of me. That really got her attention and she became obsessed with figuring out what was wrong with me. A few weeks later I was given the diagnosis of fibromyalgia and an orthopaedic surgeon confirmed it. I also have arthritis in my spine but that is secondary to the FM issues.
  • lauraloolauraloo Posts: 2,121Registered Users
    I'm sorry to all those suffering with FM-- it's an unusual disease that is difficult to diagnose and often brushed off as not real by many health professionals.

    I do not have FM but I have learned a little about it in my studies. There is good research showing that regular moderate-intensity exercise is a huge part of successfully managing FM. This includes aerobic conditioning and strengthening. I know this sounds like it may be totally out of the question for some of you, but it really is doable! Having someone to help manage the journey and of course going slow and being patient with yourself are imperative.

    Here is the American Physical Therapy Association's statement on management of fibromyalgia.

    Feel free to PM me with questions-- I'll do my best to help!
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  • crimsonshedemoncrimsonshedemon Posts: 2,098Registered Users
    I do. I was diagnosed with systemic lupus and fibro 15 yrs ago.
    I have a ton of info if you're interested.

    A great site with supplement suggestions is CFS & Fibromyalgia Solutions for Patients and Their Doctors Check out the SHINE protocol.
  • crimsonshedemoncrimsonshedemon Posts: 2,098Registered Users
    All the treatments for FM only treat the pain and they are not very successful with that. There's nothing for the insomnia, forgetfulness, spaciness, stiffness, swelling, speech and language difficulties, cold intolerance and never ending fatigue. Even when I do sleep, I don't wake up rested.

    If and when I ever have a good day, it's so easy for me to over-do and then have rebound symptoms for day on end afterwards. That's my biggest challenge is figuring out my limits when I am doing well so the next week or so aren't absolutely miserable.

    A good doctor will treat the insomnia, the pain, the exhaustion. A lot of the brain fog comes from the sleep deprivation.
    There is a sleep medication that helps fibromyalgia but most doctors won't prescribe it and its crazy expensive. It's the only medication that causes the body to actually sleep properly. OMG it's amazing! I used it for over a year then my insurance quit covering it.
    A lot of the problems from fibro come from the sleep disorder. If you can treat the sleep problems, you'll feel a lot better. Have you ever had a sleep study done? If not and you have insurance, ask your doctor about it. It'll tell you exactly why you're not waking up refreshed. Mine showed that I get no stage 4 sleep, the deep restorative phase and cycle in and out of REM too often.

    The cold issues could be related to your thyroid. Even if your bloodwork is normal, your thyroid can be underfunctioning but you have to have a doctor who's willing to try the the medication.
  • crimsonshedemoncrimsonshedemon Posts: 2,098Registered Users
    lauraloo wrote: »
    I'm sorry to all those suffering with FM-- it's an unusual disease that is difficult to diagnose and often brushed off as not real by many health professionals.

    I do not have FM but I have learned a little about it in my studies. There is good research showing that regular moderate-intensity exercise is a huge part of successfully managing FM. This includes aerobic conditioning and strengthening. I know this sounds like it may be totally out of the question for some of you, but it really is doable! Having someone to help manage the journey and of course going slow and being patient with yourself are imperative.

    Tai Ch has been shown to be helpful too..
    MMS: Error
    Tai Chi Eases Symptoms of Fibromyalgia, Study Finds - NYTimes.com
  • HopechildHopechild Posts: 5Registered Users
    Luckily, I've been diagnosed with the disease at an earlier time in my life so I can start treatment. I am also luckily under the care of the leader in curing fibromyalgia, Dr. St. Amand, who has been treating me with pure guaifenesin. If you guys can get your hands on that stuff through a prescription somehow, it may help. I am on the long (and at this point, rather unknown) process of curing it, but in order for the guai to even work, I can't use any hair or skin products with salicylates in them. (This includes any plant oils or extracts *except for wheat, soy, and oatmeal*, and anything that ends with an -ate, i believe...)

    I was therefore wondering if anyone knew about any curly hair products high in protein without any plant oils or salicylates.
  • SunshineGrrlSunshineGrrl Posts: 3,823Registered Users
    I've got it, was diagnosed 9 years ago. I can't take anything for it but muscle relaxers and/or sleeping pills, which don't really work, so I don't really take them. The pills specifically for fibromyalgia actually did work pretty well for me (Savella, Lyrica), but then my kidneys went kaput and those were the first drugs to go...along with the metformin for my PCOS. My body is one hot mess.

    Ironically, the first thing that helped me drastically reduce the pain was eliminating caffeine from my diet. It can make you hypersensitive to even more pain. I didn't realize.

    I cut out caffeine, carbonation and artificial sweeteners (not just diet sodas, but stuff like Crystal Light and that stuff). It wasn't for the fibromyalgia, but rather a decree because I had an episode of complete kidney failure for about 2 weeks. Now, they're only working at about 50%. All of the above are really, really hard on kidneys, I'm told. Now and again, I'll drink Sprite/Ginger Ale to deal with nausea, but otherwise, it's water with flavored stevia because I hate the taste of regular water. And I drink at least 64 oz of water a day. The volume of water is for my kidneys, but the constant flush of toxins from my body helps with the pain management of the fibromyalgia.

    Those things were the biggest help in pain management. Yoga was also a huge help. My doctor also suggested a white noise element in my room to help remove anything that might disturb my sleep cycle, so I have a box fax always running on low in my room to drown out house noises and be able to sleep more continuously and more deeply.

    Massages are a huge help if you can afford them. They were a huge pain reliever. Just make sure you drink tons and tons of water afterward or you'll feel like you got hit by a truck. It helps release the toxins in your muscles that tend to be released when they go into the repair mode during the 4th stage of sleep that most people with fibromyalgia don't reach. That's what my doctor says causes a lot of the pain is that the we don't reach the restorative level of sleep where muscles repair themselves and they retain those toxins. At least...part of it.

    I know some people with RA are able to eat 1/4 cup of dries Montmorency Cherries and it helps with the inflammation and pain. I tried it and it did help me quite a bit with the pain. I can't stick with it. I'm hopeless.

    People have also told me alkalized water helps them. I was told about it by a girl who had RA, but the fibromyalgia specialist doc here says it's pretty cool. Our bodies are acidic by nature, so if you alkalize it, it can change the toxin levels in the body. You can buy an alkalizer machine, but they're WAYYYY expensive. There are places around me that you can just go and purchase the alkalized water for a fee with reusable containers. It doesn't last very long, though, so you have to go often.

  • sew and sewsew and sew Posts: 3,443Registered Users
    juanab wrote: »
    They make it seem that just have to pop a pill and you are good as new. If it were that easy, you and I wouldn't be talking about it right now. I have taken Savella, Cymbalta and Lyrica. Either they didn't work or they made me extremely sick. I can't take any anti-inflammatory medication due to kidney disease caused by an interaction with Celebrex and another med I had to take for the RAD.

    All the treatments for FM only treat the pain and they are not very successful with that. There's nothing for the insomnia, forgetfulness, spaciness, stiffness, swelling, speech and language difficulties, cold intolerance and never ending fatigue. Even when I do sleep, I don't wake up rested.

    If and when I ever have a good day, it's so easy for me to over-do and then have rebound symptoms for day on end afterwards. That's my biggest challenge is figuring out my limits when I am doing well so the next week or so aren't absolutely miserable.


    Aww, man...I know exactly what you're talking about. I've never actually read all that summed up like that while reading on FM, but it all (crappily) resonates.

    I noticed that you take Magnesium. As I understand it, there's a few select forms (nutrient combinations) of it that the body actually manages to absorb well enough for useful supplementation.

    About 5 or 6 months ago, I started taking Magnesium Malate after reading the reviews on Amazon here, and I do think it's actually helped reduce the amount and severity of my flare-ups. Mine are really dependent on my hormonal cycle. I have a few flare-ups a month, and the worse happens right before, during, and after menstruation. It's still very uncomfortable during that actual window of menstruation, but it's not quite as oppressive. It's worth it. Then the instances of flare-ups not around the time of menstruating have seemed to just lessen, and when they do happen, they're over faster.

    Malate comes from malic acid, of which green apples are a huge source. It's what lends the tartness. One of the things that piqued my interest about Magnesium Malate for FM is that often times green apples would definitely hit the spot for me, in a hearty way, not a "my taste buds want it" alone thing, although that too.
    “It was only a sunny smile and little it cost in the giving but like morning light it scattered the night and made the day worth living.” - F. Scott Fitzgerald

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  • crimsonshedemoncrimsonshedemon Posts: 2,098Registered Users

    I noticed that you take Magnesium. As I understand it, there's a few select forms (nutrient combinations) of it that the body actually manages to absorb well enough for useful supplementation.
    .

    Magnesium and malic acid are critical for fibro. You want to use a chelated form not the cheap form oxide or citrate. I use glycinate. Malate is an excellent form that combines with malic acid so you get both. Malic acid is also critical in atp production (energy). Magnesium helps in over 300 processes in the body yet we're deficient so our body just struggles.
    The Role of Magnesium in Fibromyalgia.

    I use D-Ribose for energy and couldn't get thru the day without it. It's so helpful. I use a few other things Dr Teitelbaum recommends and have had great results. I feel better now than I have in years and I've quit a couple prescription drugs in the process.
  • VTmomVTmom Posts: 2,486Registered Users
    This thread is unbelievably interesting to me. I have thought for several years that I may have fibromyalgia. I'm always stiff and achy, have chronic insomnia, am forgetful, and always cold. I had my thyroid tested a couple of years ago (bloodwork was normal) and have tried several different Rx's for insomnia (nothing worked). I started running/exercising about a year ago, hoping that would help with my overall health and fitness. It has been wonderful on many levels, but I've been perplexed as to why it hasn't helped with my insomnia and achiness. How does one get tested for FM?

    Thanks to all for the great info here...it's really interesting.

    ETA: oh, another interesting little tidbit - I JUST gave up caffeine a few days ago to see if that would help with my insomnia, even though I only drank 2 cups in the a.m. I thought it was worth a shot. Now I'm anxious to see if it helps with the stiffness, too.
    The smallest deed is greater than the grandest intention.

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    Just think I used to worry 'bout things like that,
    Used to worry 'bout rich and skinny, 'til I wound up poor and fat,
    Nowadays I kind of worry where my mind's been at,
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  • crimsonshedemoncrimsonshedemon Posts: 2,098Registered Users
    VTmom wrote: »
    This thread is unbelievably interesting to me. I have thought for several years that I may have fibromyalgia. I'm always stiff and achy, have chronic insomnia, am forgetful, and always cold. I had my thyroid tested a couple of years ago (bloodwork was normal) and have tried several different Rx's for insomnia (nothing worked). I started running/exercising about a year ago, hoping that would help with my overall health and fitness. It has been wonderful on many levels, but I've been perplexed as to why it hasn't helped with my insomnia and achiness. How does one get tested for FM?

    Thanks to all for the great info here...it's really interesting.

    ETA: oh, another interesting little tidbit - I JUST gave up caffeine a few days ago to see if that would help with my insomnia, even though I only drank 2 cups in the a.m. I thought it was worth a shot. Now I'm anxious to see if it helps with the stiffness, too.

    You can be hypothyroid and your blood tests be normal. It's very common.
  • SmilingElephantSmilingElephant Posts: 666Registered Users
    juanab wrote: »
    They make it seem that just have to pop a pill and you are good as new. If it were that easy, you and I wouldn't be talking about it right now. I have taken Savella, Cymbalta and Lyrica. Either they didn't work or they made me extremely sick. I can't take any anti-inflammatory medication due to kidney disease caused by an interaction with Celebrex and another med I had to take for the RAD.

    All the treatments for FM only treat the pain and they are not very successful with that. There's nothing for the insomnia, forgetfulness, spaciness, stiffness, swelling, speech and language difficulties, cold intolerance and never ending fatigue. Even when I do sleep, I don't wake up rested.

    If and when I ever have a good day, it's so easy for me to over-do and then have rebound symptoms for day on end afterwards. That's my biggest challenge is figuring out my limits when I am doing well so the next week or so aren't absolutely miserable.

    This post makes me want to cry. I have been to two doctors that have told me i am too young for FM. But i know i have it. I hurt every single day. When it rains, i get a sensation of lightning or electricity flowing through my arms and legs. When its cold, my whole body just THROBS. I try not to complain, but it makes me so angry bc its an illness ppl outside dont really see and they think ill just snap back to my old self and be live and spontaneous all the time. I have been crying about this today. I am always tired. I often feel like im in another dimension, my speech is like a puzzle, ppl don't understand what im saying sometimes, sometimes i completely forget what im talking about, i can't find words. I've been dealing with this for about 2 or 3 years now.

    I am also Bipolar and sometimes im confused which one is acting up unless im really hurting. Im hurting right now. I've been in bed all day today. Its to a point i dont want to go anywhere or do anything and im gaining weight. Idk what to do.

    I won't lie, sometimes i turn to alcohol when i just can't take the pain anymore. I usually just drink a glass of wine just to sleep. It hurts worse when i lay down after working all day.

    Im just so frustrated by it all. Nobody around me really takes me seriously. But it really does hurt.



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  • goldencurlygoldencurly Posts: 2,385Registered Users
    juanab wrote: »
    They make it seem that just have to pop a pill and you are good as new. If it were that easy, you and I wouldn't be talking about it right now. I have taken Savella, Cymbalta and Lyrica. Either they didn't work or they made me extremely sick. I can't take any anti-inflammatory medication due to kidney disease caused by an interaction with Celebrex and another med I had to take for the RAD.

    All the treatments for FM only treat the pain and they are not very successful with that. There's nothing for the insomnia, forgetfulness, spaciness, stiffness, swelling, speech and language difficulties, cold intolerance and never ending fatigue. Even when I do sleep, I don't wake up rested.

    If and when I ever have a good day, it's so easy for me to over-do and then have rebound symptoms for day on end afterwards. That's my biggest challenge is figuring out my limits when I am doing well so the next week or so aren't absolutely miserable.

    This post makes me want to cry. I have been to two doctors that have told me i am too young for FM. But i know i have it. I hurt every single day. When it rains, i get a sensation of lightning or electricity flowing through my arms and legs. When its cold, my whole body just THROBS. I try not to complain, but it makes me so angry bc its an illness ppl outside dont really see and they think ill just snap back to my old self and be live and spontaneous all the time. I have been crying about this today. I am always tired. I often feel like im in another dimension, my speech is like a puzzle, ppl don't understand what im saying sometimes, sometimes i completely forget what im talking about, i can't find words. I've been dealing with this for about 2 or 3 years now.

    I am also Bipolar and sometimes im confused which one is acting up unless im really hurting. Im hurting right now. I've been in bed all day today. Its to a point i dont want to go anywhere or do anything and im gaining weight. Idk what to do.

    I won't lie, sometimes i turn to alcohol when i just can't take the pain anymore. I usually just drink a glass of wine just to sleep. It hurts worse when i lay down after working all day.

    Im just so frustrated by it all. Nobody around me really takes me seriously. But it really does hurt.



    Sent from my LG-LG730 using CurlTalk App


    Please keep at your doctor or find a new one. It took me years to get diagnosed. The prescriptions for it don't work for me so I take supplements and try to exercise a little bit every day. If I am having a bad day, I just walk laps around in my house or yard. On a good day, I can do yoga for an hour. I don't mean fast or power yoga, just a calm slow routine. I take the following forms of magnesium:

    oxide 250mg 1x day
    malate 283mg 2x day
    bis-glycinate 100mg 2x day

    I also daily use magnesium oil made from boiled water and magnesium chloride flakes. It helps with the muscle pain and stiffness and spasms and cramps.

    I know the oxide pill isn't the best form of magnesium but it helps prevent constipation which I also have from IBS. I also take fiber, soluable and non-soluable for that. I also take a pro-biotic daily

    The best stuff ever for my energy level is D-Ribose. I take 1000 - 1500 mg per day and it prevents me from feeling so weak and exhausted.

    I also take Deproloft for anxiety and depression and this really helps me sleep better and not feel so overwhelmed. It is available without a prescription and is a combination of several natural remedies for depression.

    Don't give up. There isn't a cure so far, only treatments. If you go to the Mayo Clinic's website they have a lot of information and so do several different fibromyalgia support websites. Someone here recommended the SHINE protocol and I am trying to implement it.

    And there are several of us here you can talk to. The curlies are very supportive and caring. (((HUGS)))
  • SmilingElephantSmilingElephant Posts: 666Registered Users
    Thank you. :)

    I am going to annotate those supplements and try them. Im sick of medication. I already take two for my brain.

    I have been having lots of muscle spasms especially in my legs. But i went to the hospital a few weeks ago (i thought i was having seizures) and found out my potassium level is a little low so i have been eating lots of bananas.

    Other than that, i just have no energy. And this is coming from someone who at one point held 3 part time jobs and was trying to go to school, catching the bus. I like to go do things but lately i feel helpless.

    I feel so sad today and my legs are throbbing, ny feet feel stiff. I am trying to not cry.

    But i will try the supplements.

    Sent from my LG-LG730 using CurlTalk App
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    Cleanse: SM Moisture Retention or Suave Naturals shampoos
    Co-Wash: Suave Naturals, L'Oreal EverCreme or EverCurl
    RO/Detangler: Tresseme Naturals:nemo:, GVPCB
    Leave-In: SM Curl Enhancing Smoothie, TN, GVPCB
    Styler: EcoStyler, GF Pure Clean gel, KCCC

    Just discovering my hair likes protein! :dontknow:

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  • Jess the MessJess the Mess Posts: 5,844Registered Users
    I never came back to this thread. Bad Jess. I'll update when my mom is back in town. I've seen her when it was at its worst and I so feel for you ladies. It can be so hard.
    High Priestess JessMess, follower of the Goddess of the Coiling Way and Confiscator of Concoctions in the Order of the Curly Crusaders

  • crimsonshedemoncrimsonshedemon Posts: 2,098Registered Users
    Thank you. :)

    I am going to annotate those supplements and try them. Im sick of medication. I already take two for my brain.

    I have been having lots of muscle spasms especially in my legs. But i went to the hospital a few weeks ago (i thought i was having seizures) and found out my potassium level is a little low so i have been eating lots of bananas.

    Other than that, i just have no energy. And this is coming from someone who at one point held 3 part time jobs and was trying to go to school, catching the bus. I like to go do things but lately i feel helpless.

    I feel so sad today and my legs are throbbing, ny feet feel stiff. I am trying to not cry.

    But i will try the supplements.

    Sent from my LG-LG730 using CurlTalk App

    Please get the book From Fatigued to Fantastic by Jacob Teitelbaum MD
    Go to his website Vitality 101

    Magnesium- Muscle spasms are usually magnesium deficiency... as are many of the fibro symptoms.... but we don't hear that from allopathic doctors. Magnesium malate is one of the best forms for fibro. It contains magnesium and malic acid. Helps with energy and muscle pain... plus you get all the many benefits of magnesium. All magnesium helps with constipation so if that's a problem, the mag malate will help.
    You need to take an adequate dose but start very slowly! It wasn't until I was at 600mg a day for a while did I notice any significant changes. You need to restore your magnesium deficiency and not until that's restored, will you notice improvements. There needs to be enough magnesium to go around in the body. Using the oral magnesium and magnesium oil are excellent ways to get magnesium into your body.

    Ribose- Dr Teitelbaum recommends 5 grams (5000mg) three times a day for 1 month. Then cut back to 5 grams (5000mg) two times a day. I still take 5 grams 2-3 times a day. It's changed my life! The powder is the cheapest way to buy this. Puritan's Pride buy 2 get 3 free is the cheapest I've found.

    Sleep- you must sleep! Be careful with most prescription sleep meds as they actually interfere with the stages of sleep. There are many herbs that are very helpful.

    Thyroid and adrenals- both need treatment and support.
    Lots of ways to treat these.

    I have a facebook group that posts a ton of info /home/leaving?target=https%3A%2F%2Fwww.facebook.com%2Fgroups%2Ffibromyalgiafighters%2F" class="Popup We would love to have you.

    Vitacost.com is where I get most of my supplements.. they're the cheapest I've found and I shop thru extrabux and earn 8% back so I save a little more. I can give you a referral code and they'll send you a 10$ coupon.
  • spring1onuspring1onu Posts: 16,528Registered Users
    spring1onu wrote: »
    insomnia, forgetfulness, spaciness, stiffness, swelling, speech and language difficulties, cold intolerance and never ending fatigue. Even when I do sleep, I don't wake up rested.

    If and when I ever have a good day, it's so easy for me to over-do and then have rebound symptoms for day on end afterwards.

    Well, I could have written that right there, but I always attributed feeling like this to my thyroid problem, even though my endocrinologist has adjusted my medication to death and I still feel the same. I know these symptoms could be a lot of things, but I put off going to the Dr. because since moving I hate the thought of searching for one and of going in and giving them my laundry list of how crappy I feel, I just envision them looking at me like I'm nuts. :lol:

    Interesting thread.

    So glad this was bumped back up! I eventually did find a family Dr. to start seeing and she did a whole slew of bloodwork on me which all came back stellar (yay!) so that was a relief. She said it's very rare she doesn't see at least one of the tests come back with something to at least keep an eye on, but all of my tests were normal levels. While that made me elated, it also left me with "Well crap, then what the heck is wrong with me??". :lol:

    Would y'all mind sharing the brands of supplements you're using and where you get them? I know quality can vary greatly from brand to brand and the thought of trying to figure out exactly what to order makes my eyes cross. I'd like to take a quality magnesium and try the ribose.

    I started taking magnesium about a year ago for really bad leg cramps I was getting and the change I saw was amazing, it really helped! It was just the cheap stuff, whatever was on sale at the drugstore or I could get at Costco so I'd be interested to see what magnesium malate could do for me. I'd love to find something that is one pill a day though because they tend to be big and I have issues with swallowing large pills. I can get the first one down, but if I have to do more than one it gets tough. I know it's all in my head and I'm trying overcome it, but still have problems with it.
    [SIGPIC][/SIGPIC]

    spring-smiley.gif?1292867680

    Byron,GA> Charleston, SC> Jacksonville, FL> Guilford, CT> Rohnert Park, CA! A southern drawl in sunny Cali! . :D
    The amount of time from slipping on the peel and landing on the pavement is exactly one bananosecond.
    I do have a secret yen for pink in unexpected places. ~ninja dog
    I've decided that I'll never get down to my original weight, and I'm OK with that--After all, 8 pounds 2 oz. is just not realistic.
  • goldencurlygoldencurly Posts: 2,385Registered Users
    I use the following : Amazon.com: Jarrow Formulas Ribose Muscle Edge Powder, 100g: Health & Personal Care

    Amazon.com: SOURCE NATURALS Magnesium Bis-Glycinate 100mg 60 TAB: Health & Personal Care

    Amazon.com: Source Naturals, Magnesium Malate 1250 mg 90 Tablets: Health & Personal Care

    Amazon.com: Magnesium Chloride Flakes 2.2 lb (35.27 oz) Flakes by Swanson Ultra: Health & Personal Care

    Amazon.com: THORNE RESEARCH - Deproloft-HF - 120 caps [Health and Beauty]: Health & Personal Care

    The magnesium pills are larger than say extra strength Tylenol. Spring - you could try tricking them down in a spoon of applesauce or even use a pill cutter to halve them first.

    The last item Deproloft-HF really has improved my quality of sleep. I started taking it for anxiety/depression. It helps me not feel so overwhelmed and makes me feel more relaxed and settled without making me feel like a zombie - which is what Cymbalta did. I will take it as long as I can afford it just for the improved sleep!!! And the good news - these are pretty small.

    All the magnesium has helped my achiness and throbbing in my legs and back and I no longer have cramps in my feet in the middle of the night.

    Spring - have you talked to your doctor about fibromyalgia? When mine was trying to figure out what was wrong with me, all my blood tests were perfectly normal. She did some kind of pressure point test to confirm it was FM. Just putting a name to it was a relief because I thought I was nuts to keep complaining about how bad I felt. I know I sounded crazy but it was true.

    Smiling Elephant - (((HUGS))) Hang in there. If you are taking meds for fibromyalgia, wean off them slowly - coming off can be brutal and send you spiralling into worse pain. I took 4+ months to wean off Lyrica. I saw a chiropractor 1 - 2 times a week during that period. It was incredibly expensive to pay that co-pay but it really helped me deal with it. I wish I had known about magnesium and ribose back then!

    FM just sucks.
  • spring1onuspring1onu Posts: 16,528Registered Users
    GC, thank you so much for the links! :) The magnesium pills I'm taking now are pretty huge and I can get one down with minimal issue so if I could find one that only requires one a day that would be optimal if it's possible. If not I'll just have to suck it up and figure it out. :D

    Sleep is where I have a huge problem which makes the whole day miserable. I believe if I could actually get some rest that alone would help me feel better. I had a horrible foot cramp a few nights ago and normally I can move my foot and work it out before it gets bad, but not this one. Oh boy, it sucked! :lol: Made my foot sore for several days and that hasn't happened in quite some time.

    It's very frustrating to feel like this because I certainly don't want to and trying to pretend there is nothing wrong when you're absolutely exhausted can be hard. We can have a day out of not really doing much physically and at the end of the day I'm absolutely exhausted, but Mr. Spring will be just fine....this can't be normal! lol My body hurts and I'm always sore and when I do new exercises I know that soreness is normal, but holy mercy it's misery.

    I haven't been back to the Dr. to delve into it further, but I plan on talking about it with her again. The thing is it seems like my complaints could be a myriad of things. When I read over the symptoms of people who have a gluten intolerance a lot of it resonates with me, but oh my goodness the thought of trying to go GF seems overwhelming to me. I think at some point I'll have to try it, but I'm not sure when.
    [SIGPIC][/SIGPIC]

    spring-smiley.gif?1292867680

    Byron,GA> Charleston, SC> Jacksonville, FL> Guilford, CT> Rohnert Park, CA! A southern drawl in sunny Cali! . :D
    The amount of time from slipping on the peel and landing on the pavement is exactly one bananosecond.
    I do have a secret yen for pink in unexpected places. ~ninja dog
    I've decided that I'll never get down to my original weight, and I'm OK with that--After all, 8 pounds 2 oz. is just not realistic.
  • SmilingElephantSmilingElephant Posts: 666Registered Users
    So i haven't been able to get my hands on any supplements yet. Im on a trip with a friend right now and im hurting very bad...luckily we're getting pedicures right now and im in a massage chair.

    Sent from my LG-LG730 using CurlTalk App
    2yrs 7 months post relaxer/2 years and 11 months natural

    Cleanse: SM Moisture Retention or Suave Naturals shampoos
    Co-Wash: Suave Naturals, L'Oreal EverCreme or EverCurl
    RO/Detangler: Tresseme Naturals:nemo:, GVPCB
    Leave-In: SM Curl Enhancing Smoothie, TN, GVPCB
    Styler: EcoStyler, GF Pure Clean gel, KCCC

    Just discovering my hair likes protein! :dontknow:

    :wav:
  • crimsonshedemoncrimsonshedemon Posts: 2,098Registered Users
    Mag needs to be taken twice a day.... it's how your body best absorbs it and you have to spread out larger doses. you cant take 1000mg at one time. i would only take 400mg at a time.
    You can take capsules which are smaller but less mgs... Usually around 100mg. But mag is big unless you use the non-absorbable form like mag oxide which you dont want to use because it's useless. The malic acid in magnesium malate is very helpful for fibro. Supplement the oral mag with mag oil. A good mag oil is about 100mg per 8 sprays. A foot soak with 2 cups mag chloride flakes is around 15 g of mag.

    For sleep, have you tried melatonin and herbs? Several rx'd sleep meds actually interfere with sleep so you have to be careful. I use the Sleep Tonight and Revitalizing Sleep Formula both by Enzymatic Therapy. I still add tons of other herbs because I have serious sleep problems but besides Xyrem, the herbs have worked better than ambien, lunesta, remeron, etc etc. not sleeping makes everything worse and just depletes your adrenals even more. Dr Sara Gottfried had a lot of info about cortisol and how it affects everything. I've read her blogs/articles and listened to several podcasts and absolutely live her.
    Hang in there!
  • DCWavyLadyDCWavyLady Posts: 373Registered Users
    I'm not sure whether I have fibro or not, but I've been trying to find magnesium that is not magnesium oxide. I figure it can't hurt to try! Where have you found magnesium that is not the oxide kind?
  • SmilingElephantSmilingElephant Posts: 666Registered Users
    Does anybody ever feel embarrassed bc of this illness. My self esteem is low bc i have both Bipolar and Fibromyalgia and i also have other issues. But i felt so embarrassed during my trip that i couldn't keep going. I felt like a 90 yr old woman, and then i had to take my meds in front of my friend for my Bipolar.

    She was cool about it, but still...it just feels so unfair. Anybody else ever feel this way? Ive become more reserved bc of all of this. I used to be a social butterfly.

    Sent from my LG-LG730 using CurlTalk App
    2yrs 7 months post relaxer/2 years and 11 months natural

    Cleanse: SM Moisture Retention or Suave Naturals shampoos
    Co-Wash: Suave Naturals, L'Oreal EverCreme or EverCurl
    RO/Detangler: Tresseme Naturals:nemo:, GVPCB
    Leave-In: SM Curl Enhancing Smoothie, TN, GVPCB
    Styler: EcoStyler, GF Pure Clean gel, KCCC

    Just discovering my hair likes protein! :dontknow:

    :wav:
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