So Much Info. Confusion Is Mind Blowing.

Discussion in 'Fibromyalgia Main Forum' started by joeb7th, Dec 7, 2006.

  1. joeb7th

    joeb7th New Member

    I am relatively new to this board and having these horrible life changing symptoms. Slightly less than 1 year.

    But I get so exhausted and confused reading about all the different supplements and cure treatments, my head starts spinning. And it's so discouraging.

    I don't even know what I have according to all the doctors I've seen...they can't say whats wrong with how can I know where to begin in trying to find a treatment or cure?

    There are so many products. So many things like hormone enhancers, viral killers, vitamin and mineral supplements.

    I read where one is good for this but isn't good for that. That one can be taken with this drug or medicine, but others should not.

    Heck, I'm still at the stage of just being told to take antidepressants and antianxiety meds. And going through these has been such a struggle with incredible ups and downs...the whole thing is so challenging and confusing...I would bet that the average American just couldn't fathom what the heck is going on here with so much info coming in.

    I want to improve my diet and hopefully find a cure for all my body pains and weakness and weird haywire symptoms as well as the anxiety and depression...but I can't even find the right antidepressants and anxiety pills yet.

    I have been trying to read about enzymes and hormone balancers and probiotics and vitamins, etc....but it's like walking into a University library here that covers 1,000 different subjects that you know nothing about!

    Add finanical ruin and other stresses like job loss and marital problems....sometimes you just have to pull over your car and put the seat back and cover your eyes...and pray.

    And forget the standard American medical community.

    They go right to anti-depressants and anti-anxiety meds so fast when they even "think" they have a hard to diagnose illness like ones on these boards.

    They are not into holistic and nutritional health and treatment. And these antidepressants and antianxiety meds they throw at you all have side effects and are so hard to come off of.... I know, I have had to get of a couple already and I just am one big exhuasted mess.

    Even though almost everyone on here is so kind and gentle and caring and wanting to help, you gotta admit...that for older people who are set in their ways, all their suggestions are overwhelming in their volume and cross-over info. And it seems almost impossible to adjust so drastically at an older age. 55 year old guys changing their dietary and cooking and shopping habits and being diligent on a hundred different supplements and experimenting with them... WHEW!

    I'm not complaining about the board or the info at all. It's truly wonderful that us average persons have a board like this. If all we had were doctors I am convinced the suicide rate would triple in this country. Average people give you more time,caring, compassion, have actually been through this stuff, and have many many great alternate suggestions. Many of which seem a relief compared to doctors antidepressants and antianxiety single treatment obsessions.

    Doctors don't give you hope beyond AD's and antianxiety meds. This board does.

    It seemed when I was young up to the age of forty...all I had to do was fast a few days and drink liquids and get a lot of rest and 90% of everything just settled down or went away. Now that's a wistful thought. It's sad to know now that those easy heal ways and times are over.

    Just keeping on the Lorzepam right now. Huge pressure to go on antidepressants. Tried one Cymbalta last night and thought I was going to die with intestinal pain, gas, sick feeling all over even fainty like low blood suger feeling, agitation, weird prickly cold feeling, and bladder weird....and just as sick all day today!

    Wouldn't mind trying some herbal serotonin enhancers....but must sort out the ones at Whole Foods. Also, always afraid to experiment and this also costs money I don't have very often.

    Thanks for the read. JB

    [This Message was Edited on 12/07/2006]
  2. joeb7th

    joeb7th New Member

    As always, caring, compassionate, thoughtful...and funny too. Your dog... 02sleep...I like your dog already.

    I am going to look into Zoloft. I am going to check on Ativan versus Lorazepam also.

    How did you go back into depression after taking Prozac for one year 02sleep? Why did the Prozac quit working?

    I have had so many suggestions for diet and supplements. This really boggles my mind.

    One thing I have to keep in mind is that my body is not in it's normal state. It's in a damaged and crisis mode state. It's also in an older state. One that naturally is never going to be that strong in fighting off anything like it was the first 40 years of my life. That's the reality of someone my age. Supplements have to considered for their potential in helping me in this true reality state of medical crisis and age.

    I am still trying to believe however, that some of these supplements can still actually "heal" a damaged older body condition internally, or get rid of a virus or toxin that may be the culrpit here...and those that just strengthen your system to kind of stand up to these culrpits without eliminating them.

    I often think I am going to be handicapped with these body damaging culprits the rest of my life and the best I can do is to find things that in some ways strengthen my system, that help it cope with these culprits without ever being able to rid myself of the them or their cause.

    That's a big adjustment to make emotionally, mentally. It takes courage to accept and not get too depressed over this living the rest of your life as a pain feeling , socially restricted person. Everything gets cut down with this...including the big enchilada....income.

    Whew...the struggle goes on...I am good for maybe 1 hour a day on this board before I have to get off. Otherwise it's just too much. But I am glad it's there and I appreicate all of you who always respond to my postings. Without you guys...I don't know......JB
  3. Mikie

    Mikie Moderator

    Is to identify your worst symptom and work just on that at first. If it is pain, find a good pain mgmt. doc and get control of your pain. It you cannot sleep, get a sleep study done and find out what you need. If you suffer ongoing anxiety, find the right drug for that. I have found Klonopin to be an excellent med for anxiety, sleep, and sensory overload but it may not be the right med for you. Each of us has to do a trial-and-error thing until we refine our regimens to fit our own needs.

    Working on one thing at a time helps you to focus and helps with the info overload.

    Do you need an AD? Do AD's help? Is you doc an expert in these illnesses. Can you find a doc who is knowledgeable in our illnesses? The reason I ask is because the first thing many docs want to do is put people on AD's. Some of us here have been helped by them but there have been some real horror stories too.

    The learning curve in the beginning is huge. It is easy to become overwhelmed. If you just keep reading and don't feel as though you must make all your decisions right away, you will eventually find yourself rereading the same treatment options. Then, you will know you've pretty much seen the gamut of treatment options.

    As I said, if you concentrate on one thing at a time, you can devote yourself to that and then move on to the next symptom you want to address. Know that it takes time but also take hope in that, when you find the right treatments, they will usually work synergystically to produce a better overall result than each treatment would taken alone.

    The bad news is that there is soooooo many treatment options. The good news is that there are now more treatment options than we have had for years. People, like me, have made good, but slow, progress on the new cutting-edge treatment. It hasn't been easy but it's definitely been worth it. I took on healing as an obsession and passion in the beginning, making it a full-time job as my health allowed. Now that I'm better, I'm not as obsessed. I really think one has to be totally comitted in the beginning.

    Finally, sixty to seventy percent of us suffer from one to seven chronic infections, bacterial, viral, and/or fungal. I do not think we can heal until these are addressed. There has been a lot of interest in treatments for infections here, so the posts are a gold mine of info.

    Suggestion for a plan: Make a list of the most important symptoms you want to work on. Start with the worst and keep at it until you find a good treatment for that. At the same time, study the info on chronic infections so that, at some point, you can start to look into this aspect of our illnesses.

    Good luck to you. And, BTW, start eating better by throwing out the junk food and avoiding processed foods. Shop for fresh food and eat as much of it raw as possible.

    Love, Mikie
  4. Bambi

    Bambi New Member

    that but I'll throw it in.

    We, or most of us, started out in confusion or even fear at what was happening to us. They didn't give us a name for it even, or gave us a variety of names. Some said we were just crazy or too emotional. Women faced a lot of that because we also got alot of "it's your hormones", which it may not have helped before some of us hit menapause. Hormones can make women more emotional at times and anxiety and stress over being in severe pain and all the other symptoms added to it didn't help I'm sure.

    But, I would advise you to start at point A. Look for a doctor that is both familiar with the latest studies and BELIEVES in FM/CFS. That's about a 10th of the fight. THEN, you will probably have to go through the whole list of things, most of us did.

    They usually like to start us out on things like trying Chiropractors, Accupuncture, therapy, yes they'll push the Anti depressants and they do help some people (with depression over the life changes if nothing else). Then they usually try all the off label medications like anti seizure medications. Some do well on those.

    If you can find a doctor who will test you for the stealth viruses like Lyme or Mycoplasmas etc, and if you test positive they might suggest anti virals and other medications. Some are helped and some aren't.

    If you can tolerate the NSAIDs for pain, they most often start us out on those. Some do ok with long term use and some develop stomach and intestinal problems, I did. If and only if you find no relief from any or all of the above they may begin to put you on low dose stronger pain medications.

    No matter what the road, you have a long one to take. Nothing happens for the better fast for most of us, and you really need to take it as slowly as you can stand to. AND give each therapy a chance. In there somewhere you might do well with the TENS machines or various other things that you might have thought of as quackery..but some actually help some of us.

    Just don't take what any one says works for them as the answer for you. We are all different and for most it is different things or combinations of things that work.

    I do believe finding a doctor that will work with you on trying everything and won't discourage you if you want to try things out of the mainstream is worth gold. In the meantime you might jot down what others mention works for them, show them to your doctor and research every thing you read or hear. In the end you will find the right thing or combination of things that works for your individual person. The main thing is to not get discouraged and give up. NEVER give up! But take it one day at a time and you will be doing yourself and your body a favor. Good luck. Bambi
  5. julieisfree05

    julieisfree05 New Member

    I had FM/CFS for about 15 years and was on EVERY medication, supplement, and natural treatment that is used for these illnesses.

    The only thing that ever helped is Xyrem. I was disabled within a few months of the toxic exposure that triggered my illnesses, but I have been "symptom free" for more than a year with this medication.

    My neurologist and rheumy are both very experienced in prescribing this medication, and have seen miraculous results with it.

    If you are interested, you can do a search on my post:

    Xyrem saved my life

    Good luck,

    - julie (is free!)
  6. Clay2

    Clay2 New Member

    It hit me early this year, I'm 62, and I could have written your post. I'm already on xanax, paxil, trazodone, but I need a complete rework on the meds. I'm just so very tired of visiting doctors.

    I really don't know how you younger people with kids manage.
  7. dorrene

    dorrene New Member

    You might want to try these four supplements. Called the Myhill protocol. Sarah Myhill MD from the UK discovered this. The B12 (sublingal at least 3,000mg/day), COq10 300mg+ and L Carnitine have helped me greatly.

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