Young female tired & scared of taking meds for FM

Discussion in 'Fibromyalgia Main Forum' started by mylisa21, Aug 25, 2005.

  1. mylisa21

    mylisa21 New Member

    Hi,

    I just joined the FM message board today in hopes of finding more information or ways to ease the pain. I know there is not "Cure", I know that there are may possible causes, and I know and have all the symptoms and have been diagnosed by a few doctors. Currently I'm taking Oxycodone and have been taking it for a year. Prior to that I was taking Tylenol and before that I was taking Advil for 3 yrs (I got an ulcer because of it).

    Anyway, I know that we should exercise (I do), seek therapy for stress (I do), take hot showers or soak in hot water (I do), and eliminate sugars (well, I'm not perfect) but doing all of this still doesn't take away the pain or allow me to sleep.

    Only Oxycodone has worked (to a degree) nand I'm afraid that taking medication for the rest of my life is going to have harmful side affects.

    When I dont take Oxy I have the worse pain ever. I can't sleep at night, I wake up stiff, and I'm in pain ALL DAY long.

    I'm currently seeing a Neurologist/Pain Management Dr. and also see an acupuncturist. This is so expensive, it's temporary relief and I'm only 27yrs old.

    PLEASE HELP!!!!!

    What can I do..I cry because I'm in so much pain, I cry because it's unfair that I have to feel this way (I feel like I'm a broken human being), and it's terrible because I'm always tired, lack energy and people don't seem to understand the pain that I'm in...

    Please, Please, HELP ME!!!! :-(

    -Michelle

    P.S. If you know someone that can help me, I live in NY but am willing to travel for a cure (for something other than medicating myself for the rest of my life).
  2. dakotasweett

    dakotasweett New Member

    as I am having similar issues since I have yet to find anything that actually helps me. All I can really offer is some support and hugs. Are the doctors you are seeing willing to try other medications? Have you considered trying any supplements...I have talked to some people who have been helped that way.

    I truly hope you find the answers you are looking for.

    Vanessa
  3. BLUEROSE7

    BLUEROSE7 New Member

    I am so sorry your having to go through all this and at such a young age of 27. I dont have alot of suggestions, but just want you to know your not alone and I so understand how your feeling. I wished I could be of some help and relieve your pain/fatigue.

    I was finally diagnosed at the age of 24(now 31)with FMS and CFS. I had suffered with many symptoms for years prior to being diagnosed..But at the age 24 it really hit me hard and full-blown! I felt like my youth has been taken from me and still do alot of times..I try to stay postive, but somedays it really hits you hard and its hard to stay postive. I too take oxycodone for pain and it does help some but hate that im having to take it at all.

    I'm sure others will come along with some good suggestions...and I hope you will feel better soon. Never give up in searching,educating yourself and looking for new things to try.

    (((((Hugs)))))
    Bluerose

    P.S. Alot here have found really good relief in taking Natural supplements...Something im working on now...

    [This Message was Edited on 08/25/2005]
  4. elsa

    elsa New Member



    Awwww , honey ... I feel so bad for you. I have had my private moments where I did some crying too. It's sounds like you have covered some common ground in your treatment. I have some other suggestions you might try.


    Try one of sleep medications that are approved for sleep. ( not off label ) i.e., ambien, xyrem or lunesta. Ask for a sleep study, if you hadn't already had one done. Poor sleep is a corner stone of our illnesses. It's getting imparative that we address it.

    Hormones are routinely thrown out of whack because of FM/CFS. I'm not speaking of the usual suspects ... but all of them ... i.e. testosterone, pregnenolone, DHEA, T3-T4,
    progesterone, cortisol and estrogen. You can order salivia testing on-line. Any adjustments can be made with bio-identical hormones.

    Address the immune system. Many ways to do this. I don't know what your blood work showed, .. mine turned up EBV. Many take valtrex, famvir or natural anti-virals. I take undenatured whey protein, colostrum and soon to add transfer factor ... there is one that specifically address EBV. Mikie - moderator on this board - knows alot about immune system treatments.

    Supplements are greatly needed. I don't know if you take any, but some are critical for FM/CFS patients ... i.e. a very good whole food b-complex, whole food multi., magnesium and zinc ( can get ZMA here. It helps sleep, but also helps muscles.), acetyl-l-carnitine, b-12, malic acid, ala and flax seed oil. There are many more to look at, but these come to mind as essential for FM/CFS.

    Take care of the muscles ... feed them if you will. The whey protein shake works here too. Other amino acids can be taken at bedtime to help muscle recovery over night. Lots of other things you can look into.

    That's my treatment outline that I try to follow. There are the Fibro and Fatigue Centers that do similar programs. I know of one in Philidelphia that might work for you.
    I know I didn't touch the many other areas you can look into. Mikie ( again) got great relief from her fibro. with guai..Shirl, also a moderator has a successful treatment.

    I hope this helps you some. Don't get too discouraged. You can get better, and this board is an excellent source of cutting edge information and compassionate support.

    Take care sweetie,

    Elsa
  5. BrendafromTX

    BrendafromTX New Member

    Hi Michelle!
    I am only 31 and have FM, CFS and Lymes. I was in your shoes just 4 months ago.
    About 3 months ago I started going to the Fibro and Fatigue Center (sponsored web site removed..mod.) and they have CHANGED MY LIFE!!!

    You can look at my profile and read my other posts (I went into more detail yesterday on the 24th).

    Also search the posts under FFC and you will find a TON of information from others who are being helped.

    Anyway, PLEASE look up the website and read all of the latest research they do the treatments off of. It's very cutting edge, and non-traditional, but IT WORKS!!!

    There are many things they can find out about you just thru EXTENSIVE blood work they do. Read my post to see what they found out about me thru the blood work that no other doctor could ever find with the "standard" tests!
    Anyway, once they know what else is going on, they treat it, and you can be cured!

    Please let everyone you know about this as well, as I don't want to see anyone suffer needlessly as I did for so long.

    Sincerely,
    Brenda
  6. ophelia_immortal

    ophelia_immortal New Member

    Michelle, honey... I know exactly where you are. I am 23 years old and dealing with FMS myself. I know how hard it is to look into your future and see this ugly thing there, no matter how many years ahead you are looking. It is terrible, awful, unfair, scary, infuriating, and downright crappy! I know...

    The best I can do is tell you about the supplement my doc has me on... You can get these at Hi Health and probably GNC. They are malic acid/magnesium pills/capsules. It really DOES help for me, though it isn't always enough. Also, I would suggest that you look into yoga. I have heard good things about it from a couple of FMS sufferers that I know, though I have not gone as of yet. In terms of actual medications (vs supplements), I have not had very good luck with pain management, but I have had some good results with a couple of muscle relaxers: Skelaxin and Flexeril.

    In any case, I really do hope that you start to feel better, sweetheart. Good luck.

    Beth
  7. backporchrags

    backporchrags New Member

    Are you taking anything, rx or herbal, for sleep? My pain was at it's worst when I was not getting restful non REM sleep. I tryed melatonin and other herbal remedies and they did not work well for me. I now take Elavil every night and I wake in less pain.
    Are you lifting weights? I have found that lifting offers the best relief for me in the way of exersize. I lift until I can't possably do another rep and am rewarded with a wave of renewed cirrculation and relaxation.
    I understand being so scared of facing a life with FMS. I have suffered from early childhood. There is still plenty of life left for you to live so don't give up hope. Just try to take one day at a time.
    Hugs,
    A
  8. mylisa21

    mylisa21 New Member

    Hi Folks,

    Thanks for all the helpful replies. Here are some additional questions and some answers to your questions.

    Nanna - Are there nutritionists that have FM experience?

    Vanessa - I have tried a number of other meds before finding Oxycodone. None in the past have worked. The last thing my doctor was going to try, other than Oxy, was Botox treatment but I'm scared of injecting my muscles and feel that there isn't enough research on long term effects out regarding Botox. Also, I think there's something wrong with essentially freezing a muscle in order to prevent the feeling of pain. I want to take care of the problem and not just mask one of the symptoms.

    Bluerose - Thanks for the heads up on supplements. That's what I'm aiming to find...more of a natural wholisitic EFFECTIVE approach rather than medication. But for now I have to rely on Oxycodone to function with less pain and be able to sleep.

    Elsa - Thanks for all the information. I have a few questions. Is saliva testing a common thing done by people with FM? Can this be done by a doctor or only online? Are Bio-identical hormones prescribed by a doctor? Does this mean more medication? Does it stop the pain and fatigue?
    I take whey as well. Is there a particular blood exam I should request? You mentioned there supplements: "i.e. a very good whole food b-complex, whole food multi., magnesium and zinc ( can get ZMA here. It helps sleep, but also helps muscles.), acetyl-l-carnitine, b-12, malic acid, ala and flax seed oil. " Is there an all encompassing vitamin that has this or do I have to purchase all of these separately? I'll contact the Fibro and Fatigue Centers. Thank you so much for all the info.

    Brenda - I will definitely look up the website. Thanks!

    Beth - I'll get the malic acid/magnesium pills/capsules this weekend. Thank you.

    A- my pain is also bad when I don't get sleep but then again I think I don't get sleep when my pain is bad...so it's a bit of both. I can sleep when I take Oxycodone. I can't sleep without it. I have tried this sleepy herbal tea but it tastes terrible and it wasn't enough to allow me to fall asleep. My muscles hurt too much as night to ignore.

    I'm going back to my neurologist tomorrow and going to request additional blood work and ask about the saliva testing.

    Thank you for your replies.

    I've read about a few supplements that I should buy on this message board:

    HGH Stimulator - is this what I should ask for at GNC?
    ZMA - is this the name of the supplement? Do they sell at GNC?
    Klonopin - what is this? Do they sell it at GNC?

    a very good whole food b-complex, whole food multi., magnesium and zinc ( can get ZMA here. It helps sleep, but also helps muscles.), acetyl-l-carnitine, b-12, malic acid, ala and flax seed oil. - is there a supplement that has all of this in one?


    malic acid/magnesium pills/capsules

    whey protein

    Aloe Vera - from Wal-Mart?



    Thanks,

    Michelle


  9. tngirl

    tngirl New Member

    I don't know that I have any advice to give you. I am trying to learn to deal with it too.

    Klonapin is a prescription drug. I don't take it but know of others that do. You could ask your doctor if it would be appropriate for you.

    I am sorry you have such pain, I hope you find the solution you are looking for.

    Lisa
  10. Rose_Red

    Rose_Red New Member

    Hi honey,

    I know how you feel. I would guess that most of us do.

    The magnesium helps with the muscle spams. Epsom salts in a not too hot bath for 20 minutes works wonders. Even Gatoraide helps if you go into spams.

    You NEED to stop taking the Oxycodone. You're just starting out with this and that's a pretty strong narcotic. You're too young for that monkey on your back. The biggest problem with narcotics is that people build tolerances to them too quickly.

    If you have a prescription plan tell your doc you'd like to try Ultram (or the generic Tramadal) - it's expensive. It's the strongest NON-narcotic pain pill out there. Honestly, I couldn't live witout it.

    The problem with FMS/CFS is that no one knows how to treat it other than to treat the symptoms. If you're in pain - take pain pills, if you're not sleeping take sleeping pills. I know it's hard to wrap yourself around the idea of needing medication. Just try to remember that our body chemicals are all screwed up. By balancing these chemicals with medications we CAN improve our quality of life.

    Have you tried Melatonin an hour or 2 before bed? I think the lowest dose is 300 micrograms. It breaks down into Seratonin in your system and that helps promote deep level sleep and muscle repair. I take 5,000 micrograms and I'm finally getting restful sleep after about 7 years of not! YAY!

    I don't know where you are in N but there's an awesome doc in Central Jersey if it's not too far for you.

    Take care,

    ~michele
  11. Pen-hen

    Pen-hen New Member

    I've been there, and your so young, hate to see you go thru all of this !! I take Ambrotose AO, by Mannatech, do not have no pain, no problems sleeping !! You well notice a differnce in 5 days !! Alot of people I know that has Fibromyalia, takes this. You can get this in powder or capsules. Go to Mannatech website, alot of good information there.

    This is all I take, and medience for my Thyroid and Hormones !! I have problems, but never no pain, and never not a problem sleeping !!

    Hopes this helps !!

    Take care, Norma
  12. mylisa21

    mylisa21 New Member

    Hi Michele,

    I'll ask my doctor about Tramadal (even though I think I may have already tried it).

    Folks,

    here's my list of things to buy at GNC. Please let me know if I'm missing something (other than the Epsom Salt):

    ZMA
    Acetyl - L - Carnitine
    Multi-Vitamin (I'm already taking)
    B-12
    Malic Acid - Whey Protein
    Colostrum
    5-HTP
    SAMe
    Melatonin3

    Also, has anyone tried going vegan? I read that this may help but going vegan sounds pretty hard.
  13. skinnymini

    skinnymini New Member

    supplements,many of which you have listed, I have a noticed a huge improvement and almost NO muscle pain. I also drink pure cherry juice once in a while, as it can really help relax my muscles...just don't over do it as it can give you diahrea.

    The best advice really is READ, READ, READ!!! And don't believe for a minute that you cannot be cured. No ONE thing is going to do the trick on its own...It will take many supplements working together that will give you the relief you seek. As was suggested, try seek out a naturopath or, as in my case, a chiropractor who is very knowledegable about FM and has a particular interest in nutritional and natural cures. He can help you get the proper tests done (saliva tests for neurotransmitters. blood tests for allergies, stool sample tests for digestive tract, etc.) They can be a little expensive but they are entirely worth it because if you don't do them, you may never discover what it is that is truly wrong. Trial and error is not going to get you well again.

    The allergy testing is very important...I discovered I am allergic to oats, corn, cane sugar, all dairy, etc. Once I began eliminating them from my diet, I began to experience relief from the muscle pain. I am also taking probiotics to replace the flora in my Gut that has been ravaged by antibiotics over the years.

    [This Message was Edited on 08/29/2005]
  14. ophelia_immortal

    ophelia_immortal New Member

    Klonopin is a pretty mild sedative. I take it for panic attacks, personally, but I imagine it could be used in other medical capacities.

    Beth