Recently diagnosed...terrified of meds...please share

Discussion in 'Fibromyalgia Main Forum' started by Sparkgirl, Jun 24, 2006.

  1. Sparkgirl

    Sparkgirl New Member

    Hello! I am new to this site, and to this condition (fibro). Well, I've been suffering with the syptoms for about 6 years now...I would say pretty severely. I recently got diagnosed and my Rheumatologist prescribed me Naproxen (which didn't seem to do anything for me for the pain but increase it in my tummy....constipation...it was aweful!) and Elavil (the death pill...had terrible reaction to it! Didn't get any sleep either...GOD, I need some sleep!). Since those didn't work, my doc is gonna give me samples on Monday for Skelaxin (which I have tried before and seems to work wonders for the muscle spasms and help with the pain) and a sleep med..and I'm terrified yet again that it's gonna have a crazy effect on me. I just wanted to know what you all have tried for pain, muscle spasms, and sleep...what has worked for you...and what's been a death pill for you? I know everyone reacts differently to meds, but it would ease my mind. Thanks everyone! happy to be here



    luv,
    Sparkgirl
  2. Blues52

    Blues52 New Member

    Hi! i am also new to this site. I was diagnosed with fibromyalgia in 1995 and was in denial up until four years ago until it got so bad that I had to do something about it. My doctor put me on "tramadol"(Ultam) which has helped tremendously. It controls the pain and depression. I only take 50mgs twice a day and I am usually pretty good to go.
    Perhaps you could ask your doctor about this medication. It has helped me!!

    God Bless,
    Sue

  3. Sparkgirl

    Sparkgirl New Member

    I appreciate the reply! :) I'll definetely keep that in mind, Monday when I see my Rheumy.



    luv,
    Sparkgirl
  4. Sparkgirl

    Sparkgirl New Member

    yah, meds suck! Death pills...most of em


    luv,
    Sparkgirl
  5. Sparkgirl

    Sparkgirl New Member

    My uncle who has fibro has done the sleep study thang...I think you are right about that. Does it cost money? I have no insurance so me and my hubby have been paying for appointments and meds out of pocket



    luv,
    Sparkgirl
  6. matn

    matn New Member

    With proper diet, your sleep should return to normal as mine did. I could not sleep for months (felt like I always had adrenaline going through me!). I could not take any medications, supplements or vitamins (terrible reactions). I eliminated dairy, gluten, soy and anything processed and my health has returned. Physicians do not know how to treat CFS, MCS and FM! Visit my profile and past postings to learn how I recovered.

    LOL

    MATN
  7. lovethesun

    lovethesun New Member

    I am on Trazadone and it works great for me.Linda
  8. AcappellaMusic

    AcappellaMusic New Member

    Ohhh, I really know how you feel. I have been ill with FMS, CFS,MPS for 13 1/2 years now and I am sick of taking medicines. I will never give up the fight on finding alternatives to replace each medicine and I truly believe that it can be done with studying on the net and coming to this site to see what is helping others. I also believe that food allergies, a faulty digestive system has a lot to do with some of our pains or a lot of our pains and I have started back on my enzymes and also ezorb which I am trying not to speak to soon but it is a calcium that is over 80% absorbably and I take it in the morning and night and so far I have just got up about one time, which is great for me. I have been on it for about 6 days so I am still waiting to see if things will stay like this so that I can tell more people about it.
  9. jinlee

    jinlee Member

    I used to have the same problem. I react weirdly to lots of chemicals so if it is a new med I sit in the hospital parking lot and take it. Then if I need the ER, I don't have to call 911.

    The worst effects from meds I have had were steroid injection and flu shot, anaphylactic problems, hives. The flu shot was the thiamerasol and they don't know what the steroid shot had in it. It is usually not the meds that bother me but the chemical preservatives in them.

    I usually start a new med at such a tiny dose the pill can hardly be cut that small and then at least one does not get as ill.

    Hopefully this will all get worked out for you soon and you can get some rest and pain-free time.

    Wishing you the best, Jinlee
  10. Dorymarie

    Dorymarie New Member

    Hi Sparkgirl,
    I've been doing a search on this site regarding chemical sensitivity and came across your posting from August.
    Iam plagued with hypersensitivity to chemicals, odors....it's at the point, I can't shop in certain areas of stores where there's high content of odor products. Even the wash detergent aisle is off limits for me. I clean house with basic products, use dye free laundry detergent, gave up using fabric softener, etc. This condition has greatly worsened since August after hospitalization. I recently took a medication that gave me a adverse reaction. This all is getting me 'down' alot.
    Iam wondering how you overcame this condition? Any info will be greatly appreciated. Thanks, Dorymarie
  11. :) Insist prescribing doctor take TWICE the starting dose, for two weeks, first, and see how "safe" they are, and how they have "very few, mild" side effects at first. and --see how they like the punch in the wallet

    ah-ah-ah! doc-no samples..that's cheating.

    I once had a Gynecologist rx Detrol LA 4mg to me, when I went back & informed him it not only SUCKED (didn't work) for my bladder spasms, but, that at CVS it was over $165 for THIRTY pills, and THEN found out it was $40 cheaper at Wal-Mart pharmacy. Wal-Mart is more exspensive on others, though

    Anyways. The look of shock, and disbelief, bewilderment on his face was rediculous----did he actually think this relatively new (at the time) drug, was gonna be CHEAP for me?

    He asked me to repeat the cost. I did, He didn't know what to say but, "Gee-man-ee Christmas!" (like my spelling? LOL)

    Man I hate drs. Also, I learned, to fill 10 pills instead of 30 to see if something will work---they jack the price up for 1/2 or 1/3 scripts, to where it's almost more beneficial to get the whole dumb thing filled. I once spent $185 & some change, on TEN pills of Zofran (for nausea & vomiting) and directions were to take 1-2 pills every 4 or 6 hrs I don't remember--ummm YEAH RIGHT! I took them extremely sparingly, and only used 2 one time. Didn't help one bit! OUCH.

    So, I haven't had any takers yet, on my NEW testing meds out theory......but... hey... :)

    I don't think my liver/kidneys will put up with much more. So, I'll ask my doctors to destroy theirs first, & then tell me the drug is safe. GRRR

    OOpsy. got on another tangent.

    For me, every single anti-depressant-of ALL classes, are my 'death pills' I'm on heart med for trying one for 3 months, and 4 diff ones have given me REDICULOUS Tremors & body jerks. I take clonazepam to help control them..

    Also had headaches, nausea, 'foot-flapping'(Paxil) nightmares (GRUESOME)terrors...and always had suicidal thoughts ON them, I don't without them..

    Crazy how our bodies work/betray us..



    Laura M
  12. Shirl

    Shirl New Member

    Most all meds are 'death pills' to me. The only prescribed med I take is Xanax, I take it at night along with ZMA (zinc, magnesium and vitamin B-6) for sleep, also take Melatonin 2 1/2 mgs, the Melatonin helps me fall asleep more quickly.

    This combination has been working for me for five years now. Before I added the ZMA, I was a total nighthawk, I lived on about 2-4 hours sleep for most of my life. Now I sleep at least 7-8 hours. I do have a bad night at times, but right now I am having other problems that is causing problems, its not the FM.

    I have had FM for over twenty years, but have gotten terrible reactions from drugs, so learned how to work around them and do natural things for the pain and the sleep.

    Also a featherbed or Cuddle Ewe will help on the bed, its so soft it helps with the pain. I use Buckwheat pillows, and a pillow between my knees at night as well.

    If the pain is very bad, most of my pain is in the upper back, I use a rub called: 'Banalg', its very strong, so be sure to wash your hands very well so you do not get it in your eyes. Walgreens sells it.

    Again, welcome to the board, and I do hope you find some help soon.


    Shalom, Shirl

  13. Abbycat

    Abbycat New Member

    You are taking naproxin which is Alleve, an anti inflammatory. Most of these drugs don't work with FM pain and do upset your stomach. Elavil is an antidepressant and doctors love to prescribe those for us thinking our pain will go away, if only we were happier. Elavil is my death pill too. It actually made me eat like a horse and made me anxious.

    Sleep is what you need the most. Sleep will help with the muscle pain and the other symptoms, like fatigue. Most of the "sleep meds" are antianxiety, antidepressants or muscle relaxants. The real sleep meds are drugs like Ambien, Rozerem, Lunesta.

    And even these do not give you what you expect. You're not goint to take a pill and pass out for eight hours. If you're like me you will still wake up a lot, but you will go right back to sleep. You will get to sleep in an hour instead of hours.

    The downside is that you may have very vivid dreams and you may feel dopey in the morning for a couple of hours. I didn't like the sleep meds because I would wake up in a cold sweat from some dream and I would feel drugged the next day.

    Instead of giving up on the drug for the symptoms, I looked at why I was taking it and weighed the positive against the negative. With the sleep meds, I hated the side effects, but I had to admit that I was feeling better in the long haul.

    Being deprived of sleep for so long, I had to work through the experience of dreaming too much. The drugs helped me to get back to sleep after the dreams, to a stage where my body could rest and heal.

    I guess what I'm saying is that there are no drugs for FM so we have to take what we can get. Most of the side effects from these kind of drugs aren't going to kill us. But some are dangerous in the long term.

    My rule is to try something for three months unless you have a life threatening reaction to it. I have found that many people give up at the first sign of difficulty.

    I have RA and most of my drugs are so slow acting that we measure progress in months. Since being diagnosed with fibro, I have been prescribed different drugs. The antidepressants make me feel crazy or have side effects that I can't live with. But I have given them their fair trial.

    Lyrica works very well on muscle pain. I also take Zanaflex. Both of these make me dopey, stupid and I have accepted that, but the longer I take them, the more I can compensate for the side effects. These drugs help me cope.

    I think that the drugs we have now are going to look like sledgehammers in five years. Medical science is already making great strides. Just give the right drugs a chance to work.

    You're not going to get a cure, or even close to it, but you will feel more comfortable if you're willing to take the chance that something will work for you.

    Abbycat