New here with questions

Discussion in 'Fibromyalgia Main Forum' started by LastsGal, Mar 23, 2007.

  1. LastsGal

    LastsGal New Member

    Hello, everyone. My name is Gina, I'm 34, married with 4 kids 10 & under. I live in St. Louis, Missouri in the US. I was diagnosed with Fibromyalgia almost 2 months ago, although I've been experiencing the symptoms for many years without knowing what was wrong... only the feeling that something had to be wrong.

    I was so thrilled to have a diagnosis after all the tests said nothing was wrong with me. Of course, now that I've researched it, I know better. Ugh.

    At any rate, I try to ignore the pain, the aches, the tiredness, the headaches, as I always have. I've taken enough OTC pain relievers over to wonder how long my liver & kidneys will hold out. I've stopped taking them at all now, because I don't feel the risk to my organs is worth it, since I get not even a whiff of pain relief out of them any more. I do what I can which some mornings means lying down after getting dressed because even that little effort just wore me out.

    I have some questions since, after lurking here for awhile, I know that most of you go through the same things I do every day.

    First, what is the best type of doctor to have for this? My GP thought depression was causing my pain, even though I knew any minor depression I had was caused by the pain wearing me down.

    Like a good little patient, I went to a psychiatrist and tried numerous antidepressants over the years... Prozac, Paxil, Wellbutrin, Zoloft & Effexor... all with nasty side-effects, including making me depressed when I wasn't before.

    I finally went to a neurologist, since they kept telling me the problem was in my head. He diagnosed me and we tried another antidepressant to help improve my sleep... Amitriptyline... with the same effects as the others. He has now referred me to a rheumatologist. Is this a good thing?

    Second, how long did it take you to get your pain/fatigue even somewhat under control? Or have many of you, yet? I'd really be happy just to get back to 5 years ago when I had some bad days, but mostly okay days. I get that I'll probably never again have two days in a row pain/fatigue free, but oh, how I'd love to have just one with some semblance of normalcy.

    Thanks for any and all answers!
    Gina
  2. zenouchy

    zenouchy Member

    Hi Gina,

    First of all, welcome and (((HUGS))). Most of us have experienced what you are going through and have been bounced around from doctor to doctor. While many are well-meaning (and some aren't), they often don't know how to treat fibromyalgia, as you are experiencing first-hand.

    Treating pain and the amount of time it takes to get rid of it or at least under control is about as varied as there are people on this board. But don't give up and keep searching!! I will tell you what works for me:

    1. Exercise (gentle)---it keeps muscles lubricated and has so many other fringe benefits---helps fight depression and keeps many other diseases away--heart disease, cholesterol lowered, etc etc. There are many articles that explain how to start slowly and do it gently when you have fibro. You can do a search on this board.

    2. The Guaifenisen Protocal. It's unique and unusual, but it's worked for several of us on the board. You can go to fibromyalgiatreatment.com for more information. You will find it to be very unique when you first read about it, I definitely was skeptical at first, but it has brought my pain down from a 10+ to a 0 to 2 on the "pain scale" on most days. I will flare occasionally when I am very stressed.

    *What's AWESOME about the Guai is that it's harmless and doesn't affect your kidneys the way OTC pain meds do. (Guai is commonly used in cough syrup, but you take it in it's pure form.)
    *Of course before starting any med, you should check with your doctor. Most docs haven't heard of the Guai Protocol, but at least they can tell you if it's OK to take Guai on a daily basis. The dosaging is different for everyone and it's trial and error, but there are many people here who can help you figure it out.

    Nothing works for everyone, but something works for most people here. Others will give you their ideas on what works for their pain. I found that the Guai GETS RID OF MY PAIN instead of MASKING IT with pain medication. That's just my experience--others have different experiences since we are all so individualized.

    At any rate, I do think it's appropriate to see a rhematologist. He/she may be able to help you out. It's certainly worth a shot. They usually go for the more conventioinal routes and recomment OTC meds in my experience, but you never know. I never thought the Guai would help me. It doesn't work for everyone, but if done correctly, it works for about 95% or more of folks who try it. Just something to consider. A rheumy may however be of assistance. Ok, I've rambled on long enough. Hope I've helped!

    My very best wishes to you for finding what works for you and a warm welcome on the board!

    Warm hugs, Erika
    [This Message was Edited on 03/23/2007]
  3. LastsGal

    LastsGal New Member

    I'll look into that. Thanks!

    There's a great route through my subdivision that's just under 2 miles that I used to walk a lot. It's been getting harder and harder to do, but I still try. If I don't, I get really stiff. Last time, I only go to the end of my street and had to rest before turning around to get back home. That was scary. :(

    I really don't like the idea of starting an Rx that I'd have to take for the rest of my life at 34. Ugh! Thanks for the link... I'll take a look at it today.
  4. coolma

    coolma New Member

    I see a Rhematoid Arthritic specialist who deals with fibro patients. The methods of treatment vary with every doctor. I can only say I have had succes with mine. From being bedridden for a very LONG time, I have now achieved a semblance of a rebuilt life - have remarried and find time and energy to do some volunteering and hobbies, plus visit family once in awhile. It's a long road for some. The earlier you get proper treatment the better your chances of recovery. Both stress and degenerative disc damage, or damage to the nerves cause this condition. It is a central nervous system disorder. The body has the inherent ability to heal itself if given the proper circumstances of rest, with intermittent easy exercise. If you're in pain you have to weigh the balance for depression from the pain against taking the meds. Amitriptolene is a favored anti-depressant for this condition. There is a book which tells you all the side effects, and possible scenarios, plus possible treatments on FM/CFS by Devin Starlanyl and Mary Ellen Copeland. Look it up in the library and if you read it, you will understand this illness. Understanding how the central nervous system works takes awhile and not all doctors are on to it. I followed my doctor's advice and there definitely was improvement over time. Good luck and good health!
  5. tngirl

    tngirl New Member

    I get some relief from using a TENS unit. It uses electrical stimulation to make your body produce more endorphins (pain fighting chemicals in our body) and scrambles the pain signals to the brain.

    Gentle massage.

    Heat

    soaking in a hot tub

    hot showers

    Pillows, pillows and more pillows

    stretching

    water exercise

    Biofreeze--it's a topical ointment

    I take prescription meds for pain because I can't stand the pain without it. It's so bad I can't function without it. I don't have any pain free days, or hours but they do reduce the pain level.

    As for the fatigue, I take Provigil (also prescription and very expensive if insurance doesn't cover it)

    Provigil is like a wonder drug for me. It stays in your system about 8 hours, according to the Doctor. But I have found after it wears off, I still have more stamina than usual even though I may not feel energetic. I believe it also elevates my mood.

    It was hard for me to take prescription meds, because I was one of those people who thought it was a bad thing to take them. Always thought the drugs people took were probably at least half the cause of their problems.

    I had an attitude adjustment after being in horrendus pain for 3 years, although I stil.


  6. obrnlc

    obrnlc New Member

    hi gina,
    and welcome to the board, although i am sorry you need us, espec. w/ 4 little ones under 10, that has got to be rough!

    it really is hit or miss when finding doctors, and i think a recommendation from someone on here in or near your area would save you about 3 years of frog-kissing before you find that prince.

    in MY opinion, neuro's are THE WORST, followed by rheumatol., followed by certain docs that advertise themselves as "pain specialists" but really want to give injections into your spine of an antiinflammatory for a NON Inflammatory problem.

    the best way to go is to have a long relationship with a reputable doc. that can be honest with you and steer you in the right direction and make referrals so docs don't look at you as just another drug seeking nutcase.

    my first rheumy (best of 3 or 4) told me after a year--whar you have (fibro) doesn't deal with joints at all and that is what rheumatology is, so we are probably just wasting each others time, but at least he was hnest and nice about it, others were CRUEL!

    good luck and welcome, i'm sure we'll "talk" again--L
  7. hugs4evry1

    hugs4evry1 New Member

    Sorry to hear about your dx but glad that you've found us here.

    One thing I noticed is that Amitripyline is Elavil, right? That causes huge weight gain and if you think you're depressed now, wait until about 25 pounds from now. Hate that stuff, and it's known to cause carb cravings.

    Many of us have found relief with supplements. One I'd recommend for muscle aches is a good magnesium/calcium/zinc supplement. Needs to be balanced to work well and I take mine twice a day.

    Another amazing supplement is the Fibro Complete Multi with Malic Acid that they sell here at the Pro Health store. They have great customer service here and although this multi seems expensive, it puts a spring in your step that I wouldn't trade for anything.

    At the top of the topic page is a thread for 'What's worked for me' and you'll find many ideas of things to try to make yourself feel better. Many of us find no help with our docs and do much of the trial and error by ourselves.

    I've learned some wonderful things here on this board and hope you will too.

    Don't forget, you can join us on the ChitChat board to talk about everyday things too.

    Hugs,

    Nancy B