Help, please (long, sorry!)

Discussion in 'Fibromyalgia Main Forum' started by AnnetClo, Jun 24, 2003.

  1. AnnetClo

    AnnetClo New Member

    Okay, here's the deal. I was diagnosed in November of last year but didn't start seeing a doctor who really believed in FM til Jan of this year.

    I came to the site about the time I was dx'd but then all I could think about was the pain. I came to the board then and asked advice and I know I printed it out but I sure can't find it.

    I am so amazed and so in awe of some of you who are together enough to do so much research and also appreciate so much that you share with the board.

    I started taking Percocet 7.5 mg in January, along with Soma for muscle spasms and Elavil 25 for sleep. The doctor added another med for breakthrough pain last week (sorry, I can't even remember the name now, Doxi something-something that made me very very nauseated). For a few months I thought I was feeling better but I don't believe that any more. For one thing the Elavil 25 stopped working and he told me just to take 50 mg until I see him next. That still doens't work. I had almost just given in to it all and decided that I would have to apply for disability and be done with it. But the tiniest little spark of my "tude" came back and I just can't do that. I am not willing to live the rest of my life in this miserable state. I just won't.

    We are planning on moving in the next 2 weeks to be closer to our families so I can get help with Ronnie. Even though he is on dialyis he still works full time as a dispatcher for the Highway Patrol. But that means he goes to dialysis 3 days a week and works the other 4. He has zippo energy and any procedure or doctor's appt he has I have to get off work and take him. Add to that all of the sick time this DD has brought on and I'm in the hole with my benefit time in a major way. Even though I work for wonderful people, it is a business and they can only take so much. And good sense tells me that Ronnie is going to need more care that I ever will as we've been told that probably his only chance for a kidney transplant is if a family member is compatible and so far none have been. Either that or they take him off the list for a time to clear up some infection or another.

    So you see, I need help. The doctor is good for pain meds but that's about all. Remember I told you on the last visit that he said he didn't have any patients over 60 with FM!!! So I can't really depend on him for anything other than meds and I need so much more.

    I read about this and that and that some of you are having this checked and that checked and taking different supplements. I can't even remember to shave both legs!! Please someone who is knowledgeable, HELP! Treat me as though I'm a child and tell me what to try. What tests should I ask for? Do I need antibiotics? Do I need that DHEA? I can tell you that the pain level is still tolerable, I'm never pain free and don't expect to be but the brain fog and the fatigue are killing me. I have to do something because I have to work and take care of Ronnie. I know you can't prescribe but someone please help me make the first baby steps to feeling better. I can't survive the rest of my life in bed on pain meds. It is so not me.

    What should I ask the doc to check? What do I need to know before I start supplements. I've read the articles that you guys post, but I promise you I don't retain it and some of it I can't even process. I need help in a major way and I truly believe that there is more knowledge on this board than in any doctor's office I've found so far. I can't trust my health to someone else. I have to be clear enough to trust ME to know what I need, not someone else. I've always depended on ME to take care of ME and I can't see giving up this easily.

  2. shazz

    shazz New Member

    Olive leaf extract seems to be a popular one.
    Then Magnesium, zma, DHEA, SamE, CoQ10,
    Sorry I have tried so many, and the OLE seems to be helping with at least one problem I have.
    I am sure you will get tons of answers from everyone on what works for them.

  3. AnnetClo

    AnnetClo New Member

    thanks so much and I promise all of you I will print out these replies and put them in my fibro notebook.

  4. Jen F

    Jen F New Member

    but I feel for you in your situation.

    {i have CFS}

    what do you think about getting tested for food sensitivities to help reduce inflammation as a response to food allergies?

    a special diet seems to help some of us, esp low sugar, high fiber, low in processed foods, high in steamed colorful veggies.

    Do you take epsom salt baths to help with muscle pain?

    Make sure you drink plenty of water, as a basic in your life.

    Have you considered the guai protocol? though it looks pretty involved and challenging.

    I hope Ronnie can get a kidney transplant to help improve his quality of life. dialysis 3x per wk must be such a drag.

    I have a cat in kidney failure, and a transplant would be the cure for him, but that's not gonna happen :) I give him subcutaneous fluids a few times per week, special diet and medication. He seems to have a reasonable quality of life with those efforts, but I wonder how sick he really feels... Vets say he could live years like this.

    I don't know why I mention that. It doesn't quite compare with a human family member, but if Ronnie can hang on, things might work out for him and you. It must be so scary for both of you.

    My heart goes out to you.

    do what you can day to day. it just might get better!

    Hope you start having more good days than bad.

    jen F
  5. AnnetClo

    AnnetClo New Member

    It's amazing that you should tell me about your cat-I have 6 indoor babies who are the absolute loves of my life. There have truly been days that they are the reason I get up every morning.

    I have started the low carb diet but so far I haven't seen much help. I drink a lot of water but not exclusively. I still have a Diet Mt Dew ocassionally but I'm getting there.

    I've looked at the book by Dr. St. Amand, but right now I have so much fog, I really don't know if I could comprehend the whole thing. Maybe that's a cop out and I should try again. I just know that I don't want to feel like this the rest of my life. I have always been a fighter and I can't give up. At least not until I've tried everything. It's just that right now, I kind of feel like I'm drowning and I'm going under for the 3rd time. I'm sure the stress of trying to move has a lot to do with it, but I'm really struggling.

    Thanks for your advice.
  6. RedB

    RedB New Member

    ANNETTECLO: I would suggest trying sublingual Vitamin B-12. It is one proven thing on this board that has helped a lot of people. It is only $19.99 for a month of pills, so it is worth a try. I used to have a hard time getting off the couch, but now I can make it through my days much easier. Hopefully, it would help you somewhat.

    JENF: Sorry to hear about your kitty. We just lost our dog to kidney disease. I have a suggestion that may hurt. We did the subcutaneous fluids before on one of our cats. It only postponed the inevitable, and the poor kitty just did not eat anything. I have done petsitting for others, and have also given fluids to other kitties. Same results, as far as I am concerned. With our dog, we refused to do the fluids. We just couldn't stand by and watch her waste away -- we had her put to sleep the day she didn't want to get up and do things with us, because we knew she had reached the point of being very ill. It was heartbreaking, and we miss her terribly, but we are glad that she didn't have to suffer. I don't mean to be on a downer about this subject, but here is my reason: If you are a person who does not deal well with this type of illness, it will probably eat away at you just as it did with me. It ends up making you sick, just for the love of your animal. Sometimes it is easier to put the babies to sleep quietly than to have to watch them get sicker each day, and not eat. Just don't let yourself get sick! It sneaks up on you with this type of problem in the household!
    Putting our babies out of their misery is one option that we are allowed with animals that, unfortunately, we are not allowed with humans. Your judgment will let you know what to do.

  7. AnnetClo

    AnnetClo New Member

    Redb-I'm willing to give it a shot. Do I get it at a health food store or the pharmacy? I hate to admit what I would be willing to try to feel better.

    Sandy- Good idea. I know we've mentioned it several times but we really do need to get together. And Starbucks is okay as long as they serve coke. I am not a coffee drinker. I do have your email and I'll send along my phone number. And let us know how your hearing goes.
  8. kgg

    kgg New Member

    your move is done. You can get B12 sublingual at the pharmacy or grocery store. I would tend to get it at a health food store. This may sound funny, but don't swallow your saliva as it dissolves under your tongue. It needs to be absorbed right there.

    CoQ10 is also another supplement you might want to start. But the others I would wait until after the move and then start them one at a time, about 1-2 weeks apart.

    Are you moving out of your area? Have you checked the "Doctor Referral" button above? I think with level of confusion you are experiencing and the stress of the move, that you need to be under the supervision of a good health care provider. As the information on this site can be confusing and you don't want to get worse in the effort to improve. Just my humble opinion. Have prayed for you during this stressful time. -Karen
  9. sewsore

    sewsore New Member

    Hi annette just wanted to let you know that my mom had been on dialyis for 5 years and then got a transplant which she has kept for 8 years now. I know it is hard to see someone go through that and see how tired they are but keep you chin up and keep on moving ahead.

    I take imovane 7.5mg every third night to help me get a better sleep and i feel it helps not to take it every night because first of all you can get addicted but also it makes you feel weak the next day so that is why i choose when to take it and i really helps.

    I know it is hard to do but you have to think of yourself sometimes and just not think of what ronnie is going through so that you can fix yourself so you can feel stronger and better to help him. My mom also worked fulltime while she dialyised and she had to drive 1 hour each way to the hospital but she never complained and the rest of us were so proud of her.

    Hope his good luck kidney comes soon and hope you start to take care of yourself so you can care for ronnie also.

  10. AnnetClo

    AnnetClo New Member

    Thanks for your advice and concern. You don't know how it's appreciated.

    I tried my pharmacy for the sublinq B12 but they don't have it so I'll try the health store.

    I feel so absolutely out of control with this mess and I want more than anything to get some semblance of control back in my hands.

    Thanks and hugs
  11. DetMills

    DetMills New Member

    Here are some supplements I have seen recommended repeatedly for FM.

    High dose B complex
    Magnesium (you can even ask your doctor for Magnesium injections, which reportedly have helped people)
    Olive Leaf Extract
    Alpha Lipoic Acid
    Silymarin (liver function)
    L-Carnitine (lactic acid clearance)
    probiotics (acidophius/bifidus)
    essential fatty acids (omega 3/6, flaxseed or fish oil)
    MSM for inflammation of joints and muscles
    L-Glutamine for tissue repair and sugar regulation

    Sam-E and NADH have also helped some people, but they are expensive supplements and I know some people who have been disappointed by the results. I would love to know if NADH has helped anyone here. Also, has anyone tried grape seed extract?

    Some dietary changes might help as well.

    Massive supplementation can be costly, and the other downside to throwing the kitchen sink at the problem is that it may be difficult to determine which supplements are actually helping. Maybe try a few at a time, and you might want to give them 30 to 60 days.

    Good luck and take care,

  12. RedB

    RedB New Member

    I order my sublingual vitamin B-12 online from TriVita. You can find it with a websearch.

    It's good stuff, and it comes by UPS so fast!

  13. teach6

    teach6 New Member

    As far as supplements go you want to start with them one at a time so you can tell if they are helping or causing a problem. I would first recommend that you try magnesium. I take Magnesium Plus from the store at this site. It is magnesium glycinate, which is the most absorbable form of mag.

    Next would be a Malic Acid and Magnesuim combination. Again they have a great product here. The prices are good too and the quality is better than a lot that you will find at health stores.

    As for DHEA, that is a hormone and should only be taken by people who have been tested and found to have very low levels of it. It shouldn't be taken lightly, or without a doctor's recommendation.

    I think this is a good start. I found it took me a long time before I realized the magnesium was working. I believe that is because I was so depleted of it that my body needed a lot to get to the point that it was actually helping.

  14. IntuneJune

    IntuneJune New Member

    Food allergy testing, enviromental testing and then following through with avoidance helped A LOT with fibrofog. Not completely, but I could read and comprehend what I read. You do need to be able to think clearly in order to help yourself. You can take the wonderful suggestions from this board, but then YOU need to be able to evaluate for yourself what works for you. It's a lot of work.

    You are wise to move near family--I was the caregiver 24/7 for my m-i-l who had full blown Alzheimer's could not be left alone, had her days/nights mixed up, etc, we had her in our home for five years. Bad situation for me health-wise. Fondly June.
  15. AnnetClo

    AnnetClo New Member

    You don't know how grateful I am. I have always told my kids that when things get tough, stop, take a deep breath and deal with one thing at a time. However, I can't seem to take my own advice. This fog and fatigue are even more overpowering that the pain was before the doc started treating me for it. I'm sure I'm stressed out about the move and feeling like I will never get those boxes packed, and knowing that the drive to work will be 70 miles roundtrip every day, but I've always taken everything own myself and now I can't seem to let go of this, even though I know there isn't a thing I can do about it.

    I do have my first appt with the psychologist today. Maybe that will help.

    Thanks again to all
  16. IntuneJune

    IntuneJune New Member

    FMSers have so many aspects of the syndrome to sort out, it is mind boggling--well even our doctors are not good at it. Plus we deal with all the aspects life that get thrown our way, all this with sometimes, NO brain. :(

    It's not YOU who is not taking your own advice. This DD is getting in the way.

    Good luck, Annette