Discussion in 'Fibromyalgia Main Forum' started by Rebeck, Oct 1, 2006.

  1. Rebeck

    Rebeck New Member

  2. lenasvn

    lenasvn New Member

    Sweet Bedkyy,

    You are in my thoughts. I am exhausted today, but I hope someone may have some good thoughts for you.

    Please drop back in tomorrow and let us know how you're doing.

    Many fibrohugs
  3. blueski31717

    blueski31717 New Member

    Hey fight4acure I resemble that remark lol. Serious I am praying/thinking about you BEDKKY. Good thoughts your way...do you feel them....
  4. hubby

    hubby New Member

    I am very fortunate to have a husband that understands me most of the time, and really knows me better than I do. The other night I woke up in the middle of the night, like now, and I hurt soooooo bad that my toenails and fingernails, and eyelashes hurt. Had not hurt that bad in such a long while, I sat on the side of the bed and cried. I have ebeen through a lot and it has taken it's toll.

    Took some meds and finally calmed down enough in my husabands arms to go back to sleep. Did not wake up that bad that is the big thing with this crap you can be ticking along and then all the sudden bump you are on the floor.

    My husband knows that if I cry for whatever reason and I usually have a good one, that I will pay for it, and never know for how long, so he tried to sooth me. I found later I had made my meds up and he came in when I was reading and forgot to take, them so of course they did not work, Duh. Here I think I am being organized and slip up anyway. There is so much to organize and I don't think I will ever see that lady that did all that organization again. It is hard to think.

    Then I feel sorry for my husband as he is retired and hurt his back, just like I had the previous year and he is still fighting it, though I caould tell the difference, as he was not a ball of fire anymore. He is so stoic though, most of the time I have to play 20 questions to find out how he is feeling. I am then upset with himm, because all these years, as independent as I have been, he wanted me to be dependent on him, and now that I am he screwed around thinks he is still 20 and hurt himself. so our relationship has changed completely I hate some of the aspects of the move and retirement,

    I never thought of, and want to go hom, of course that is crazy this is our home. Time has flown so fast though and and as sick as I have been I feel I am letting life pass by. I just have to hit the bed and read and be left alone. Mike flips channels all the time, nothing new, and the race cars, and whatever he watches, news, ads etc is so loud, that I try and read to stay in the same room and just can't.

    We have been here 2 yrs already and it just seems like yesterday we arrived. I have had to have 7 pintrs of blood in the last year, pernicious anemia they think, and if the other doesn't get me, this doesn. So now I aVOID THE Dr as I don't have insurance right now and have a milliong things I think he will find and reference and tests etc.

    All I know is that God has given me this life and why is he taking away the ability of me being able to do things for others and myself if I am going to stay on this earth, because eight now I just barely manage and feel so guily that the things that aI used to do and enjoy have now become so hard to do and stressful.

    I do think one the worst things is that I feel I have had a stroke, cannot think of words, describe the item and my husband fills in the blank and my spelling has been shot,. so I feel useless. I keep thinking I should have it checked out but know with all the medical I have had lately they would have found it if I had had one.

    Sorry to go on, but sounded right up my ally and I will pray that someday we can all walk together in the sun and feel good and have a life, isn't that what we all one.

    nite hubby


    hello and I know how hard it is to be in pain and gain weight only making everything worse.

    I wanted to make a suggestion, my mother has had neuropathy for about 2 years now and nothing has worked to make her feel any better she was always in pain and some days could barely walk. Recently her doctor tested her B12 levels and they were found to be very low, now I know this isn't the case for everyone but I maybe it might be the same for you.

    The change in my mother after 2 B12 shots is amaizing, she still has some pain but she's beginning to feel alive again, she can get up and do things now, it's just amaizing to see the difference. And all this over low B12, I read on line about this and low B12. Here is a copy of some helpful info:

    Overgrowth of bacteria — Some people develop vitamin B12 deficiency as a result of conditions that slow the movement of food through the intestines (diabetes, scleroderma, strictures, diverticula) , allowing intestinal bacteria to multiply and overgrow in the upper part of the small intestine. These bacteria steal B12 for their own use, rather than allowing it to be absorbed by the body.

    Dietary deficiency — Vegans (strict vegetarians who do not eat any meat, fish, egg or dairy products) can develop vitamin B12 deficiency because they lack vitamin B12 in their diets. In patients with bulimia or anorexia nervosa, vitamin B12 deficiency also can be related to diet. However, your liver can store vitamin B12 for up to five years, so it's rare for diet to cause this anemia.

    Symptoms tend to develop slowly and may not be recognized immediately. As the condition worsens, common symptoms include:

    Weakness and fatigue
    Light-headedness and dizziness
    Palpitations and rapid heartbeat
    Shortness of breath
    A sore tongue that has a red, beefy appearance
    Nausea or poor appetite
    Weight loss
    Yellowish tinge to the skin and eyes
    If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

    Numbness and tingling in the hands and feet
    Difficulty walking
    Muscle weakness
    Memory loss


    Your doctor will ask you about your diet and about any family history of anemia. Your doctor also will review your medical history for medical illnesses (diabetes, immune disorders) or surgeries, such as stomach removal, that can lead to B12 deficiency.

    Your doctor may suspect that you have vitamin B12 deficiency based on your medical history and symptoms. To confirm the diagnosis, he or she will examine you and order laboratory tests. During the physical examination, your doctor will look for a red, beefy tongue, pale or yellowish skin, a rapid pulse and heart murmurs resulting from an anemia-related increase in blood flow demands on the heart. Laboratory tests will include:

    Standard blood tests to measure the level of red blood cells and check their appearance — In vitamin B12 deficiency, red blood cells are unusually large and appear abnormal.

    Blood tests to measure B12 levels — Levels of iron and folate also may be measured to check for deficiencies in these nutrients.

    Blood test to measure methylmalonic acid level — The blood level of methylmalonic acid increases when a person has B12 deficiency.

    Blood tests for intrinsic factor antibody — Your doctor may order special tests for antibody levels to determine if you have pernicious anemia. Most people who lack intrinsic factor in their stomach have these antibodies in their blood.

    Bone marrow biopsy — Occasionally, a bone marrow biopsy is done to help confirm the diagnosis. In this procedure, a small sample of bone marrow is taken by inserting a needle into the pelvic bone just below the waist on either side of the spine. The bone marrow sample is examined in a laboratory to look for other causes of anemia and red blood cell abnormalities.
    Expected Duration

    With proper treatment, symptoms of vitamin B12 deficiency begin to improve within a few days. In vegans and other people whose B12 deficiency is diet-related, oral B12 supplements and a diet designed to increase consumption of vitamin B12 should cure the condition. People with pernicious anemia or people who cannot absorb vitamin B12 from their intestines will need injections of vitamin B12 every one to three months indefinitely.


    To prevent vitamin B12 deficiency, vegans should take adequate amounts of vitamin B12 supplements to make up for the shortage in their diet.

    For people who cannot absorb B12, the condition cannot be prevented. However, once it is diagnosed, regular injections of vitamin B12 will prevent symptoms from returning.


    Treatment for this condition involves replacing the missing vitamin B12. People who cannot absorb B12 need regular injections. When injections first are administered, a patient with severe symptoms may receive five to seven during the first week to restore the body's reserves of this nutrient. A response usually is seen within 48 to 72 hours, with brisk production of new red blood cells. Once B12 reserves reach normal levels, injections of vitamin B12 will be needed every one to three months to prevent symptoms from returning. People who cannot absorb vitamin B12 should continue to eat a well-balanced diet that provides other nutrients (folic acid, iron and vitamin C) necessary to produce healthy blood cells. Sometimes people can take high doses of oral B12 to provide replacement instead of undergoing injections, but a physician should closely supervise this.

    In people whose vitamin B12 deficiency is related to overgrowth of intestinal bacteria, treatment with oral antibiotics, such as tetracycline (sold under several brand names) or ampicillin (Omnipen, Polycillin) may stop bacterial overgrowth and allow the absorption of vitamin B12 to return to normal.

    Vitamin B12 deficiency resulting from inadequate dietary intake is the easiest to treat. The condition can be reversed by taking oral vitamin B12 supplements and adding foods containing B12.

    When the anemia is severe and the red blood cell count is extremely low, blood transfusions may be necessary for the first couple of days until the vitamin B12 injections begin working.

    When To Call A Professional

    Contact your doctor for a physical examination if you experience unexplained fatigue, palpitations, shortness of breath, sore tongue or any other symptoms of vitamin B12 deficiency. This is especially true if you are a vegan, are older than age 50 and of African-American or Northern-European descent, have diabetes, have an autoimmune disorder or have had your stomach removed.


    The outlook is excellent because this form of anemia responds well to treatment. However, it is possible that nerve cell damage will be permanent. Some residual damage to the nervous system may remain in people who sought treatment late in the illness.

    I know this may not be the case for everyone but since I have witnessed this change in my mom, only by accident did they find this, I hope to maybe help others in the same situation.

  6. Jana1

    Jana1 New Member

    I wish I had something magic to say or do to make you both and me too, feel more capable and in charge of any aspect of our lives, but I don't.

    My mom died 3 days ago in AZ and though there is to be no funeral and we had all the business etc, done, I can't even go down and help as I just hurt too much and too often.

    I don't understand why God allows this but I keep trusting that there is a reason to it.

    I do have many blessings. most of them are my family!

    Cyber hugs to you both and to everyone else who is struggling to accept their lives as they are.

  7. carebelle

    carebelle New Member

    I understand .Read some of my post if you can .I have gone from one ex stream to the other with my pain and mental health.

    It's much better to focus on prayers for hope and try to think positive about things that help you. Warm baths ,good music what ever can put you into a good mood.
    I have found that I may not be able to cure this DD and even though I live with very bad Pain 24-7. my mental health is something I have control of now. I haven't always, but I have worked very hard with my doctor and antidepressants.

    I wish you the best and if you work on your mental state with rest and prayer you can find ways to cope with the pain and learn about a lot of things that may help you on this board.
    Good Luck and let us know how you are doing.
  8. lenasvn

    lenasvn New Member

    bumping for BEDKYY.
  9. lenasvn

    lenasvn New Member

    Wake, you're an angel.

    Please let me butt in and say Ensure Butter Pecan! I can't leave them alone if they're in the house,,,Ice-cold,,,,,mmmmm
  10. Beachtrekker1

    Beachtrekker1 New Member

    My heart connects to yours....When people are experiancing the same thing it's as if you have your connection and language. A person can say one word and you know instantly how they are truly feeling...I;m wigh you Bedkyy
  11. Rebeck

    Rebeck New Member

    DEAR FRIENDS, I HAVE NEVER BEEN SO AMAZED AT THE RESPONSE I HAVE RECEIVED FROM MY POST, I'M FALLING APART, GOD KNOWS I NEEDED THEM, AND I KNOW HE WATCHES OVER ME AND NEVER LEAVES ME, AND HE HAS SENT ME ALL OF THESE ANGELS TO HELP ME MAKE IT, I WANT TO THANK YOU FOR YOUR MERCY AND KINDNESS TO ME A STRANGER, SO THANK YOU, LENASEN,jillstarr, desertsage, blueski31717, BEARANDBUGSMOM, jane1, carebelle, lenasvn, WakeMeUp, beachtrekker1, O2SLEEP. i will pray for you and you continue to pray for me, i am some better, but i weighted again and last time at the dr, i was 131, I am now 126lbs. I really don't want to lose anymore, I am 5'7" so that is low enought. love you all. forever and always, BEDKYY
    [This Message was Edited on 10/06/2006]
  12. cherie23

    cherie23 New Member

    through some of the really tough times. I believe the lord has given me so many blessings but at times it's hard to concentrate on anything else when so much is overwhelming, illness can bring so much dispair and frustration. These are some verses that have given me strength. I hope you take no offense to me using bible verses but they just make so much sense to me.

    And He said unto me, "My grace is sufficient for thee, for my strength is made perfect in weakness." Most gladly I would rather glory in my infirmities, that the power of Christ may rest upon me.
    Therefore I take pleasure in infirmities, in reproaches, in neccesities, in persecutions, in distresses for Christ's sake, for when I am weak, then I am strong.
    I just truly believe that when the going gets tough the tough get going and I think to an extent thats what this means. Nothing can defeat us if we find strength in our weaknesses. I will not let my health problams defeat me and I know you won't either. Just one of those days I think so many know too well.
    My thoughts and prayers will be with you
  13. museinhighlands

    museinhighlands New Member

    I'm fairly new here and saw your post, and am praying for you, for courage and strength and trust in God to get you through this. You are not alone!

    Praying that you keep eating healthy foods each day, and keep drinking Ensure, and vitamins. You need to eat and drink about 8 glasses of water to flush out toxins (teas & fruit counts).

    I have bad flares with (neuropathy) numb/tingling hands/feet and problems walking too, and the other lovely things pain/fatigue/fog,etc).

    I've had FMS/CFS (ETC) 18 yrs. & struck by lightning & car accidents-so nerve problems... Yet test negative on Diabetes, Lyme & others. It's frustrating, but hang in.

    Nutrition, rest and faith and prayer are vital in carrying me through those days. (I am 5'3 and have gone down to unhealthy wght of 100, it's important to maintain, I'm at least 112 now).

    I agree with prior posts suggesting getting vitamin deficiency checked out, also checked for hypoglcemia?
    Get retested Lyme, various tests are used. Although it could be the FMS symptom.

    When you can't walk well it's hard to get the proper nutrition. (or anything else). Some food store here in NJ deliver, you place order & they deliver... I had that problem, of getting the food and making it. You need help to get through this, get family or local church, someone to help you get the food you need to eat. Buy Stouffers frozen for now, and soup, but eat and get feeling better.

    Eating "nutrition=dense foods" helped me, and taking vitamins too. I dont' eat processed foods, to many chemicals irritate me. I eat a lot of small meals and good snacks (all day). breakfast lunch dinner and snacks.

    Breakfast most important, Oatmeal or Shredded Wheat or Eggs. Health veggy Juice (juicer at home?) even V-8 or buy at health store, Shakes made with yogurt, fruits & juice, or juice & club soda). plain yogurt with chopped apples with a lil vanilla is delicous, plain yogurt & cucumbers, some lemon/garlic--yummy dip for whole wheat pita bread. Yogurt is great for getting good bacteria in body (but not store prepared with tons of sugar & chemical).

    Celery with peanut butter or cream cheese. Almonds, walnuts, pecans (handful ONLY per day). Herbal Teas, etc., healthy carbs like Whole grain bread with yummy strawberry jam. low to no sugar, egg or tuna salad, turkey or grilled swiss cheese sandwiches.

    Soups, whole grain-brown rice made with chicken broth & peas, and favorite seasoning; fresh veggies-brocolli, corn, tomatoes, green beans, sweet potatoes, (or frozen) & some fruit, need protein: salmon, tuna, chicken, some beef, eggs. (Treats of dark chocolate :) and corn bread!)

    I keep away from high glycemic index foods that convert to sugar rapidly-white breads, white rice, etc. And I go easy on carrots & potatoes, fruits, corn bread and oatmeal/ cinnamin cookies & ice cream occas. I allow some treats, but keep sugar "low to no." Pretty much a Mediteranian Diabetic diet. Dont know what your meals consist of now, or if you already do this, but it seem to help me.

    Stevia is a sweetner organic from health foods stores, better healthwise than artifical sweetner. read about it?

    I keep the cooking simple, lil olive oil or wee bit of butter & herbs: steam veggies, broil fish, meat and make rice to last a few days, then bake sweet potatoes few days, etc. Certain whole grain pasta are good too, occass. egg noodles.

    Must get nutrients and drink water -- stay hydrated.
    And stress hormones exacerbate it, so rest and relax for now to heal. (I take Flexeril at nite, helps sleep & pain use to also take Elavil at night 10mg.)

    So much great advice already given from everyone here wishing to help you! Sorry didn't mean to write a book! CONCERNED THAT YOU GAINED WEIGHT, NOW LOST SO MUCH,
    hope I at least got you hungry.

    Rest your troubled mind,let God handle the details for now... rest, recuperate and get past this awful flare soon.

    Many blessings,
  14. AllpainNogain

    AllpainNogain New Member

    bedkky, my thoughts and prayers r with u. new here, and can barely type today due to bad fibro flare in my wrist, arm, and elbow.

    this disease is insane and can make one insane in the process. im so glad to have found this site to know im not alone. pain is ever constant and i often pray to God asking what purpose am i here for when i can't do good for anyone else, let alone myself.

    i can only say this: God loves u and so do I

    he will help us get thru this, hour upon hour day by day, because alone this disease will destroy u. my only support system is GOD so without himim nuthing.

    please keep the faith, i know only too well how it feels to want to give up and die as fast as i can so i feel no more pain... but, God keeps me going so i thank him for every breath i take and every day he gives me.

    love and prayers, D

    ps. "EMANUEL"
  15. Granniluvsu

    Granniluvsu Well-Known Member


    I'm so sorry that you are feeling so badly. It makes me so thankful that I do not feel as bad as you but bad enough. I have had this DD for over 20 years and was dxed about 6 months ago.

    You will be in my thoughts and prayers today. There are SO many here that are suffering. Don't give up !!!

    Whenever I feel sorry for myself all I have to do is come to the board and it wakes me up quickly to the fact that there ae others ALOT worse off than I, bedridden and such.

    Try and think positive and try (within your limits of course) to do some things that you ENJOY doing, even if they are little. If you can get out a bit, maybe go out to lunch with a friend, go to a movie , read or whatever you enjoy and are able to do. I have found that a positive attitude has helped e ALOT !! Believe me, I know sometimes it is very hard !! Some places you go even have those little skooters that you ride around in if walking is difficult.

    Yes, make sure esp if you are not eating alot to take you vitamins and drink the Ensure. I am SOO glad that you were able to lose so much weight. It is so much healthier for you ! Try not to lose to much weight though. I do not know how tall you are at 136 pounds. That surely does not sound like much weight esp if you are a tall person. Keep up your strengh, hon. Let us know how you ae doing. God bless you !!

    Lots of warm hugs and blessings,

    Granniluvsu (Marilyn)

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