Please read...need info and support if you'll have me back

Discussion in 'Fibromyalgia Main Forum' started by DLsGroovyMoM, Oct 4, 2005.

  1. DLsGroovyMoM

    DLsGroovyMoM New Member

    listen I know I got my feelings hurt here a while back about my post being deleated...I never really said anything I just stopped posting for while as I was not in a good place with all that was going on...It was just that this was the first place I like I fit in and was going through a very difficult thing and needed someone to talk to...I totally understand...but my feelings are tender and...anyway I am sorry!

    Now can I please come back and can someone please help me cause I am losing my mind...

    ok update...most recent diagnosises
    1. FM
    2. Nerve damage lower back>>>down legs
    3. tendon/ligament damage/weakness in neck and shoulders
    4. Sever vitamin/mineral defficiencys...espically magnesium/potassium...almost none
    5. mycoplasma bacteria
    still waiting on somemore blood work and my heavy metal test
    but this is enough as far as I am concerned

    treatment so far
    1. Meds...Provigil, celebrex, skelaxin, ultracet...I have been on provigil and celebrex for a while, the skelaxin seems to help me sleep and the ultracet helps but he will only give me 2 a day and I had to beg for that...which only lasts for about 2 hours
    2. steroid injection in lower backX4...some improvement in the amount of constant pain, but if I have to sit/stand for more than a few min at a time it is bad again
    3. injection in neck/shoulder Left side to regrow tendons/ligaments I can't think of the name right off polotherapy or something...just had my first round on monday still pretty sore from that will do 3 rounds one every 2 weeks on each side...yeah pin coushin

    ok here is where I am losing...I like this doc b/c he is the first to bleive me and actually find stuff wrong with me...but he...well he is not really explainin very much to me...always refering me to his web site to get my info...
    up until now I have been soso about that...now he wants me to get ready to begin the marshall protocol...I read what he had on his site and immedialty was confused and in need of much more info...I have been reading some old posts but it is lots of reading and my fog is real bad these days...there seems to be ALOT of stuff to...I mean no vit d or sunlight and what is ?hexing? and I will feel really bad when first starting the treatment, how long do you do it?...I am so scared and confused ya'll someone please help dumb this down for me a little so I can get my stuff straight...please...

    He wanted me to start that new antidepressant ?caymbalta I know that is wrong but its close...I am terrified of anitdepressants at the moment...although I need one but am totally afarid of the "black box warinings" on anitdepressants now due to what happened with my friend.

    He also wants me to start Juice Plus...which is a might high for vitamins...at the moment I am having probs with insurace as it is they will not pay for any of my meds except the ultracet. We are very broke at the moment so trying to figure out all of this and feed/cloth my family is really stressing me out...and so you will no we don't make enough to live and pay bills but we make too much to qualify for any government or drug company assistance.

    Any help would be great
    Thank You
    Amy

  2. abbylee

    abbylee New Member

    They will help with your med bills if you have no insurance
  3. DLsGroovyMoM

    DLsGroovyMoM New Member

    I do have insuracne...that i pay out the *&^ for which is part of why we are so broke...I've said b4 how I just can not understand how programs can go by your gross income...after insurace and taxes hubby and I only bring home 1/3 of our gross. that just is not enough for us to get by on and deal with emergencys or sicknesses like mine.

    and yes we have 2 incomes...hubby and me...I am in despirate need of taking some time off or stopping work all togetehr but there is just no way...Jody keeps saying I need to quit work or go part time but even Jody's income (which is less than mine) gross is over the limit for help...this is the stupidest thing i have ever encountered in my life...well besides this freakin dd.
  4. jenunsa

    jenunsa New Member

    I've had a couple of posts deleted, too. I guess I misinterpreted the rules about posting. Some of the rules are not very specific or clear and can be interpreted different ways.
    My very first ever post was deleted, in fact. How's that for a welcome? :)
    Ever since then I felt like I didn't quite fit in here. But that's true of pretty much everywhere I go. Humans are so difficult.
    Anyway........ just wanted to let you know you're not alone as far as getting censored and feeling rejected.

    Now, to the medical stuff...Have you been tested for celiac disease? That can cause vitamin deficiencies.
    That's all I got. Sorry. :)

    Good luck and welcome back!
  5. rileyearl

    rileyearl New Member

    I'm thrilled to see you back!

    I don't know about the Marshall protocol, but there are lots of others who can put those terms in English for you.

    I do take Cymbalta--60mg once a day. I've been on antidepressants for years and as soon as they kicked in, I felt so much better. The dark thoughts that were with me daily before I started on ad's went away. I'm sure he will start you on a low dose to see how you tolerate it. Effexor is another one that lots of people with fm take. They work on the same brain chemistry, but for some reason Effexor is way more expensive.

    Go with your gut on whether it's time to jump into treatment now. If it will make everything else impossible because of finances, well, a few weeks might not made much difference.

    Here's a hug!

    Francie
  6. DLsGroovyMoM

    DLsGroovyMoM New Member

    bumping for more info
    thanks
  7. DLsGroovyMoM

    DLsGroovyMoM New Member

    the good doc list on this site. He is well versed in FM, and is head of a major FM conferene/support group that is going to be held this month in SC...
    this being said I think maybe he Knows too much? is that possibel? or he thinks...I don't know when I first went to him I thought he was my life saver...now I seem to have a lot of my old and some new questions and concerns and the stress is really getting to me...my head is spinning from all the info I have been trying to read, my fog makes me not be able to comprehend all of it and my eyes keep doing funky stuff making it hard to read it all anyway. I know I will not do anything I feel comfortable with...but I am dying to be better...not cured just better...is that too much to ask?
  8. orachel

    orachel New Member

    I missed much of the drama over the deleted posts as I was going thru a bit of a personal crisis with my health at the time, and didn't have brainpower or time to be on boards as much as I'd like. My point here is that we all go thru things mentally and physically that the average person would never have to imagine dealing with....if you needed a while to get over a bit of upset and distress over your posts being deleted, I can certainly understand that! LOL

    I myself had a few "warnings" in reference to information posted in my topics....trying to give out email addy without giving full URL...

    I had read the rules, but just didn't understand the distinction. I know "moderators" overall are just trying to keep the board as upbeat and positive and informative and supportive for as many of us as possible, as this board is such an ESSENTIAL support system for myself and so many others! I totally understand and respect that.

    But, whether due to our health, or frustration over finances or lack of "answers" and progress in getting well with our physicians, we all have our BAD DAYS. I don't consider myself (nor do my therapist...she's a phd I believe) "depressed", but I certainly have days when I just can't maintain my positivity, and even have had times when frustration has caused me to lash out verbally at those who really love me. It's part of the DD, I think....coming to terms with constantly changing medications and side effects, and not seeing a whole lot of improvement in how we feel.

    My point is please please please don't beat yourself up about having a few posts deleted. Of course we all want you here (or at least I do! LOL) and missed your posts in your absence.

    I know how much more "sensitive" I've become since my illness, and I know that my feelings of persecution are quite valid a lot of the time. I've dealt with doctors and disability personnal who really did not have my best interests at heart. I'm working really hard to remind myself constantly that everyone on these boards is "rooting" for my success and happiness, and everyone's here. I know I have a huge boost in my day when I see that one of my buddies here is doing well, even if I'm at a low point. That "certainty" about the support we can all find here is protected in many ways by the proctors and moderators. So, I try to be as understanding as I can even when I don't fully understand their decisions.

    Glad you're back, Groovy!!! Wish I had some better advice for you on the financial front, but my family is going thru the same schtuff. If my short term dis doesn't start paying soon my husband and I may truly lose our dream house, which will be tragic. But I do try to remind myself that financial issues are the second concern in our life, no matter how dire the money situation gets...primary concern is my family and my health and happiness.

    I'm looking into some "work from home for the disabled" info that was posted here a few days ago. Looks like some amazing info, and seems to pay ok (allright...maybe not anywhere near what I used to make in the professional world, but every little bit helps, right?) and really be something that many of us can do in our schedules and according to when we feel our "best" physically. Maybe give that a look see?

    As for the expensive supplements, I know that many docs recommend a specific brand of supplements and vitamins. Usually their preference (in my experience) is based on rate of "absorbtion" into the body so you get the most "bang" out of your vitamins. Every maker "manufactures" their product differently. I read that the average vitamin only allows typical human to "absorb" approximately 20% of the value of the vitamin. Ie: if something you're taking is supposed to be 100% of your daily value, most likely your body is only making use of 20% of it...still leaving you quite deficient. But, you do have to also consider any "affiliation" or preference the docs have to a certain brand of supplements just because of the salesmanship of that company's representatives who "market" their product to the doc. Not always the most expensive is the most "potent".

    A solution I've found is a nutritionist at a local "whole food" store (claudia's, its called). They don't work on commision, or care in one way or another what you purchase other than a true desire for you to get as well as possible. I had a nutritionist at claudias spend over an hour with me a few weeks ago and I explained what my doc wanted me to start taking, what supplements I'd read about here and in my research that I was interested in, and basically explained that I was "flat out completely broke". She spent a HUGE amount of her time explaining to me the effectiveness versus cost of each and every product I was interested in...the most expensive is NOT always the best.

    What I've found as a general rule over the years (and my trip to health food store just backed this up further), is that "fluid extracts" of supplements and herbals are really the best way to go. EX: I could have purchased a large bottle of echinacea capsules by a well thought of vitamin company and had about 30% absorbtion into my body for about $20....

    A one fl ounce of "fluid extract" of echinacea (make sure to get the "alcohol free" version of anything you take so as not to get funky with your meds!! Very important!!)which will actually last about 2wice as long as the tablets, with a MUCH greater level of absorbtion (approx 60-90%, depending on what you're taking) cost me only $5.50!!! That's much more effective, and $15 savings just in one supplement.

    Just a suggestion, but this strategy allowed me to stretch my almost non-existant supplement budget MUCH further, with a much greater benefit to my body. Brand I'm really liking is "Nature's Answer"...but again...make sure its the "alcohol free" Fluid Extract. BTW...I feel signifigantly better since I started on some supplementation a few weeks ago. Pain is still wretched, and I'm still a mess much of the time, but I feel much "stronger" emotionally and my energy level is much improved.

    Also, I know there's a VERY well thought of vitamin/supplement/herbal manufacturer that has paper catalogue and internet ordering...they are the cheapest I've found for a ton of things...can't think exactly what its called, but its Sundown, or Sunrise, or something like that. I'm sure if you do a basic search for sun + vitamins you'll come across it. They are very inexpensive and even the tablet/capsules are supposed to have higher rate of absorbtion into your body than many many of the more expensive brands.

    Whew!! Wrote you a dang book! LOL....I'm just glad to see you back, and wanted to help you feel better in any way possible. I hope you're having a beautiful morning!

    Good luck, Amy!
    Rachel

  9. Grandma6

    Grandma6 New Member

    I am so sorry that you are feeling so bad. I'm sure all of us have been where you are right now with your depression. As for me right now, besides my new medical problems with my colon, the weather here is changing and my aches and pains are elevated.

    I too have the worse FOG there is but I am lucky enough to have a GREAT HUSBAND and he goes to every doctor appointment I have and every test that I have ever had done on me, I have insisted on him going back with me if it is at all possible. He is my inturpreter as far as remembering everything my doctor says. I am also lucky enough to have a great doctor that will sit with me for a whole hour if that is what it takes for me to understand exactly what he is saying.

    So you may consider finding someone you are close to and trust to go with you to the doctors and give them full permission to ask the doctor any question they feel needs to be explained better. If you have someone like this, (becasue my husband has done this with me), after you leave the doctors take the time to go over each subject that was discussed. Sometimes my hubby will ask me to give him a little time to figure out the best way to explain things to me in a way that I can relate too. I've never been considered stupid or dum but with having FMS over 30 years I feel like my brain doesn't work well any more and I may even bring something up that happened at my dr appoinment a few days later. Another thing we do is to keep a notebook around and make little notes all the time when something happens between dr visits and then we review the notebook the day of my appointment so we have all the questions ready. If your like me I forget about different episodes that happen btwn dr visits. My Mom use to keep a daily journal of just little notes and it helped us out when we would take her to her dr. because my sis and I would take her at different time.

    I ADVISE EVERYONE TO KEEP SOME KIND OF DAILY JOURNAL OR NOTEBOOK.

    I hope you get to feeling better but I have to agree with some of the other posts, maybe it's time you found a different doctor. Never go to a doctor on there medical background only becasue with me, personality & spending time listening to me is right up there with their medical degree.

    Good Luck and God Bless,

    I'll keep you in my prayers.......Grandma6
  10. DLsGroovyMoM

    DLsGroovyMoM New Member

    I didn't realize how much I missed the support ya'll give.

    At this moment i am in tears and so scared...I went out for a bit had to do some shopping for my son...winter clothes and all...I had the ?flu last week and thought I was over it but I suddenly came down with a sever headach, stiff neck and I am shaking all over...I'm sitting here all alone with my son and he doensnt understand why i am crying...and I just don't know what to do at this moment. I am so timid and "scared" of people thus I am scared to call my doc...my last one dismissed me b/c I told her I was going to find someone eles to treat (as she told me to deal with it and would not give me anything) my pain while she ran her tests...I may not be real sure of this guy right now but he is all i have...ok enough whinning...gotta do something...thanks you guys...glad to be back
    Amy
  11. fivesue

    fivesue New Member

    Wow, my dear! I'd say you have a bit too much to deal with right now. I re-read your response to my neighbor's suicide and saw that you were upset about a deletion...I don't know the post or why, but I'm glad you are back...I hate to be "in trouble" so I would have been upset myself even if it were no big deal like it seems most people feel was the case. I just hope the suicide situation is working itself out for you emotionally and that it isn't adding to your list of really serious issues.

    I'm afraid that the governmental medical assistance just leaves a whole bunch of productive people out in the cold, and you and your family seem to be in that situation. I don't have any answers for you; I'm sorry. I just want you to know that if I hear anything, I'll be sure to let you know. I think I'd go and visit some state and federal assistance sites on the net and maybe look at some drug companies' sites, also. Who knows? Maybe you could find something. You know your situation better than we do.

    I wonder if you might qualify for some disablity pay for a time while you try to regain some health? Does your company have something like that? Would your doctor write a letter confirming your need for time off? Maybe if you could get some rest, you could make a list of the priorities in your life right now and focus on them. I find when I'm overwhelmed if I don't do that, I'm running in all directions, getting nothing accomplished and getting more and more frustrated and tired.

    Again, I'm glad you are back. Of couse you are welcome! I just wish I had some answers for you. You do have my thoughts and prayers for some good answers quickly!

    Hugs,
    Sue

  12. DLsGroovyMoM

    DLsGroovyMoM New Member

    he called to check on me right after my last post and noticed right away that something was wrong. So he said I'll be right there and he came home for lunch (which he usually dosnt do) he sat and talked to me for a bit tehn got up and made lunch for DevinLee and me...he is so sweet...i took a ultracet and skelaxin and feel some better...atleast the shaking and headache have subsided some...come on 2pm...DevinLee's nap time which means my nap time yeah!!! Thanks for all your help and support...I know I've got to grow some...ya know the things men have betwinst their legs...and start taking up for myself with these docs...thanks again
    Amy

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