So many FMS people on meds, how do you TOLERATE them

Discussion in 'Fibromyalgia Main Forum' started by Chelz, Oct 21, 2006.

  1. Chelz

    Chelz New Member

    Hello Everyone,

    I notice when I'm on the boards and I'm browsing around, that so many people are on meds. I have FMS, TMJ, myofascial pain, bulging disks. I currently do not take any medications because I just can't tolerate them.

    However, in the past, while I was going from doctor to doctor back in the late 1980's and 90's, doctors didn't have a name for what was wrong with me, (sound familiar?), anyways, I was given drug after drug by these MD's just because they did want to help me.

    Within an 8 year span before I was diagnosed in 2002, I was given, Zoloft, Paxil, Elavil, Wellbutrin, Zanaflex, Vioxx, Skelaxin, Ultracet and maybe a few other I don't remember now.

    ALL OF THESE MEDS gave me side effects so bad that I couldn't justify taking any of them and felt they were counterproductive. The only drug I got any benefit out of was the Elavil because it did make me sleep, but I also gained a lot of weight. Other side effects of these meds were: Weight gain, breathing difficulty, headaches, urine retention, messed up menstrual cycles, weird thinking, I could just go on and on.

    Again, how is the world can anyone tolerate the number of meds they are on? Just so curious, and feeling very abnormal. Hugs, Chelz.
  2. mymichelina

    mymichelina New Member

    I don't understand how someone with the pain I am experiencing could function if it were not for medication. I guess we are all different with different pain levels. It would be great if I could NOT take them but the side effects I experience NOT on them are worse than ANY side effects my medications have given me.
  3. Kimba4318

    Kimba4318 New Member

    same as mymichelina....
    "ditto, ditto"

  4. cathugs

    cathugs New Member

    Same as mymichelina. I would be a raving maniac without
    my meds.

    As it is on my 11 different RXs I can barely function
    most of the time. Also take various supplements that
    I have learned about while coming to this message board.

  5. lease79

    lease79 New Member

    I don't understand how someone with the pain I am experiencing could function if it were not for medication.

    Simply because we have no choice. Some of us just cannot tollerate meds, or have allergic type reactions to almost every type of med that passes our lips. It is as simple as that.
    And as for the pain, it doesn't mean were suffering any less than the next person. Just because you don't understand it, doesn't mean it's not happening.
    It just means that theres not alot prescription meds wise that we can do.
    Over the years I have developed sensitivities to most medications that I've needed to take. I've had one severe reaction that put me in hospital for 3 days & made me very wary of new meds.
    I since deveoped sensitivities to multiple medications that I used to be fine with.
    Pethidine (cannot breathe, had to literally fight to breathe whilst on it,) Panedeine Forte (paracetamol & coedine,) dizziness, nausea & difficulty breathing. And the only one over the years that I have been able to take - diazepam, I have now started having trouble with too with very shallow breathing, so I can see myself striking that one off the list soon too.
  6. lovethesun

    lovethesun New Member

    I'd be curled in a ball in bed and not sleeping.I didn't want meds early on.When it got to this point,it was a matter of having any type of life.Linda
  7. mymichelina

    mymichelina New Member


    "Again, how is the world can anyone tolerate the number of meds they are on?"

    Because we have no choice. Just because you don't understand how it helps us does not mean it is not real. I am happy that, as I have read in some of your previous posts that herbal remedies have helped. Be happy for those of us that can find relief from the medications we take. We are all in this together.
  8. rosemarie

    rosemarie Member

    How would be be to not take any pain medications? I don't know.
    For me I have always had some pain problems , first it was female problems and I was given Tyenlonyl #3's and soma to ease the terriable pain that came with my period.

    But as time went on I did have some reactions to some medications. I don't tolerate any steriods, my body does strange things and it only causes the pain to become worse than it was and like some one has just injected my body with liquid lava as I can feel it burn all through the joint that was treated.

    I have been put on some antidepressants and I have the worst reactions to them , I become the wicked B- of the west. And I get angry over the dumbest things that should not matter. So after trying several different kinds of antidepressants. And with each of them the reaction that I should get does not happen and the ones I do get are unusal. So I have had to stop taking them.

    Now it is a matter of controling my pain. How I wish that pain meds were not needed. I live each day with pain. And when I had to to on strong pain meds I was upset and worried that it was going to be so bad for me. I learned all of the reasons that I were causing me to live in pain.

    I have ddd, spinal stenosis, facet syndrome, radilopathy of my lower lumbar spine,siatica, nerve pain in my tail bone, pain from a shattered wrist that has a plate and 6 screws in it and one is lose , Both knees have arthritis and they need replacement, arithitis in my back, Fibro , MPS.

    I would know that I would feel better emotionally if I didn't take pain meds as I get alot of stress from family and friends. Because no matter what you take or how much of the pain medications your on , you either get told that your taking too much and your doctor is over prescribing pain meds for you. There is no middle ground.

    I have written what I am on and the reaction I get is shock as I am on a lot of strong narcoitic pain pills. And I get told that "WOW" your taking alot of this my doctor won't give me any more than XXX amount. And sometimes I feel like I am being judged by people who don't know me and how I react to the meds I am on.

    Just because your taking pain meds does not mean that you want to be taking them it is just a way of life that you have to do as if I were to not take them I would not be able to do any thing but lay around and cry.
    Sorry this is so long.
  9. juliejo

    juliejo New Member

    Hi Chelz,

    Like you i too have tried every med there is going over the years and also tried every form of treatment known to man.

    I cannot tolerate anything either as i too reacted so bad i too ended up in hospital on "another painkiller" last week which i thought i was dying with.
    Won't mention it as it was a narcotic.

    In saying that we are all so very different arn't we so what suits one may suit another and vice versa.

    Would'nt it be fantastic if they could find a wonder drug to ease the pain etc etc with no side effect's.

    Well we can all live in hope i suppose.

    I too only take valium but think also that dos'nt work anymore and is making my sympton's worse now.

  10. ladykew

    ladykew New Member

    It's different now. I research the meds, I ask the doctor what the side effects are, how long I will need to take them, what the benefits are, the long-term effects, etc. I'm glad to have the meds...I don't know what I would do without them. I've been going to my Rheumatologist for 20 years and he trusts me with the meds and I trust what he gives me. He is reserved in giving me medications, and never gives me anything that would be addicting if I took it as prescribed, and after 20 years, he knows I'm very careful and take no more than is prescribed.

    My Psychiatrist is the same way. He has been treating me for the last 12 years, and we have a mutual trust for each other. He will not give me a highly addictive drug such as Xanax, and I do not ask for it. We work with the lowest dosage of safe drugs that work, and increase them as needed. I've never been addicted to any medication. I'm sure I've developed a tolerance for some, but as long as you take it as prescribed, such as for pain, the pain uses it up, and if you do not take more than is necessary, you will not become addicted to the medication.

    Some of you may not believe this, but I have read about it, and I am consciencious. Who WANTS to be a druggie??

    I'm never completely pain free. But I like to be able to remember my name (hard enough with fibro-fog) and not be spaced out. I go to family reunions and have so much fun I run on adrenaline. Then I go home and crash!!!

    I'm proud of my doctors! I wish there more like them in this world. THANK YOU DR.T and DR C., Dallas, Texas. Yes, I travel 350 miles one way every three months to see
    them. I don't drive mother takes me. I guess I'm writing this because I know I'm going to have to
    make some changes and find someone closer to home, as the trip is too much for my 80 year old mother who does all the driving except in the city, and my eyes have changed just recently so that it is becoming dangerous for me to drive in the city. So this is just a fare-the-well to the greatest Psychiatrist and Rheumatologist in the country!

    Thanks for giving me this opportunity to pay them tribute on this board. I will miss you both!

    Ms. LadyLew
  11. PVLady

    PVLady New Member

    Actually I also cannot tolerate many drugs. For Fibro I have been on a drug called drug called Subutex for over a year. It has very few side effects and is dissolved under your tongue. My pain on a level of 1-10 is a 2 now.

    Subutex acts to fill your pain receptors so so you don't feel as pain as much. My doctor has many fibro patients on it. It is normally used to treat opiate addiction and actually does prevent withdrawal from opiates but is also used to treat pain.

    I take Nexium for gastritis, Tylenol Gel Caps 2-3 day, and rarely Ultram. I also take Ambien for sleep.

    I have no intention of taking anti-depressants and also could not tolerate Elavil.

    Everything is always trial and error. I have such a sensitive stomach, I can't take most herbal remedies.
  12. fibrohugslife

    fibrohugslife New Member

    I am sorry to say but I see your post as uncaring and lack of compassion for others who are in different situations as you are.

    Just because you can't take meds for your ailments does not mean someone else in the same situation can't either. As for you and your reaction on the meds well that is you, and not everyone else. Everyone reacts to medications DIFFERENTLY!

    I am on meds as because I need it, without the meds I would tell you that I probably would be in the deepest depression ever, and in the hospital for extended amounts of time and I am not even going to go into too much about my personal life.

    I can't take all of the meds that they prescribe me as I would be a complete zombie and consulted with my pain clinic doctor and followed their advice about that. The meds that I do take help me to be able to function and do things that I have not been able to do in years. The meds I am on do have some side effects but what medication doesn't have that?

    People are in different situations and suffering through a variety of ailments that they do need medication in order to gain relief from anything.

    Also another thing, you can't really generalize because in reality the whole world is not all on medication. Remember that everyone is different.
    [This Message was Edited on 10/22/2006]
  13. chloeuk

    chloeuk New Member

    I dont think the OP was judging those who do take meds she was simply asking the question...and I think that it is a helpful one to experience is that I was on many meds for the different symptoms I had and I was tolerating them all fine and then I was given a new drug for a migraine and had an allergic reaction to it and then the next day had another recation to a drug I had been fine on for months...that made me reconsider all meds as I do not want that to happen again, I had never been in an ambulance before and that was called by the drs when I just couldnt breathe...the replies seem to make this a less common reaction and I wonder if it is the illness that causes the hypersensitivity to meds because I had no problems before this with any drug.
  14. Bruin63

    Bruin63 Member

    Hi, I too am highly intolerant of most Meds.
    It took years before they figured out what was wrong with me.
    Durning that time, I had trouble with Dr.s because they only wanted to give me the Anti-Depressants, a lot of the same ones you took.

    Most gave me Nightmares, or made me feel like a zombie.
    So I would quit taking them because they didn't really help with my pain either.

    I had adverse reactions to Codene, and also Darvon in any form. The only Pain med that works for me are the Hydrocodones, I take the Norco, and I am forever grateful that there was a Pain med that I could tolerate.

    I did try the MSContin, and ended up in the ER, so I was put back on the Norco.
    It dosen't get all the pain, but I can at least live without wanting to just lie in a bed and not move, cause it hurts.

    The Vistril works good for me, as I have a Histamine problem, my body produces to much, so that has really been the Best med, that they put me on.

    I worry, about when the Norco quits working since I don't tolerate the Morphine n Pill form, it to hard on my Intestines, I have IBS/IBD, so that I supcet is why I can't take thoes.

    So sorry you aren't able to find a Pain reliever that you can tolerate, because it sure did give me back my life, well better than it was before.

    Pain can keep you Stressed, it can bring on Inflamation in your Body/Organs, and it makes it hard to even think about anything else, when all you can feel is pain.

    I have FMS/CMPD/OA/etc. so again I am grateful that God let Hydrocodone work for me, and that someone even Developed it.

    Good Luck in your Quest,
  15. matthewson

    matthewson New Member

    I tolerate them quite well. I have not had any major side-effects with any of my meds that I am on. I briefly tried vioxx a few years ago, and though it worked quite well for my pain, my blood pressure shot way up and I had to discontinue it.

    I take tramadol and neurontin for the FMS. I also have vicoden for break-through pain, of which I only use about 1/3 of the tablet at a time. I have not had any adverse reactions to any of these drugs.

    Hope you can find something that works for you. It is hard to deal with pain and function. I work part-time and would not be able to without my meds.

    Take care, Sally
  16. millennia

    millennia New Member

    I don't take many meds, and the ones I do take did not come easily. I have such bad side effects, it seems like to everything. But I am in a lot of pain, I am very sick, just like all of you whether you take meds or not.

    I just keep trying new stuff, if it works, I add it to the list, if It doesn't, I toss it and try something new. It stinks, but I just want to feel better.

    I do wonder if the people who said they deal with the side effects have had really bad side effects. You don't just deal with throwing up all day, not being able to leave the bathroom because you can't stop throwing up. You don't just deal with your whole body shaking uncontrollably while feeling like you are spinning in one direction and the room is spinning in another. You don't just deal with stomach pains that double you over so you are lying on the floor crying in pain.

    Some of us are very very sensitive to medicine, those side effects are regular for me when trying something new. We don't judge those who take a lot of prescriptions, we envy them.
  17. Mini4Me

    Mini4Me New Member

    I'm willing to try meds, exercize, stretches, massage, meditation, relaxation tapes, trigger point tennis ball therapy, trigger point injections, etc. I'm on a search for some sort of quality of life. It may not be the life I once had, but being without any meds or therapy is not an option for me (I get suicidal). So far, the best meds for me have been opiate painkillers. All the other junk out there just made me worse (elavil, welbutrin, zanaflex, effexor, ultram, flexeril, lyrica, mirapex, etc, and on and on.

    I'm just thankful my current doc is willing to keep trying. Some visits I think she's just about to give up on me, but then comes up with something new to try, while keeping my pain somewhat under control.

    I was med-free for 46 years of my life, and raised in a religion that did not allow doc visits or medication of any kind (as a kid). So, I didn't choose this path, it just landed in my lap.
    Thank God for Painkillers and for other meds that work for others like me!
  18. Chelz

    Chelz New Member

    For Fibrohugslife, I'm sorry you were so offended by my post. I was simply asking how these drugs are tolerated by so many.

    It was NOT to imply that any of you are weaker for taking the meds. I WISH I could take meds, but can't.

    When I was on the meds, years back, these medications have messed up by body even NOW, years later.

    I had some insensitive doctors who refused to believe my 100 pound weight gain and messed up menstrual cycles, and aggressive behavior came from the antidepressants that I was on, but they were from these drugs. Zoloft almost put me in the hospital. I had pretty bad fibro fog before these drugs, after I was on them it was even worse.

    So obviously, for me many of the meds they put me on put me back 10 steps with the fibro and then I had additional problems to deal with afterwards and am still dealing with. It's no fun to take meds for this condition, then have to explain once again to my boss why I have to leave work, miss pay, and go home because the side effects were just too much. Do not judge me, you haven't walked in my shoes either.

    Chloeuk, thank you for stating that I was simply asking this question. I think a few people who have responded to my question have taken some kind of offense to it, this was not my intention at all.

    For those of you who do well on meds, good for you. For those of you who don't do well on meds, you understood my post.
    Hugs to you all, Chelz.

  19. Bruin63

    Bruin63 Member

    I really took it as a question, you were asking, those who do take med.s how they manage to do it without side effects.
    I saw nothing to be offensive.
    I hope your feelings weren't hurt and I hope my reply, was clear on that.

  20. dani78xo

    dani78xo New Member

    i've been tried on several meds, and a lot of them don't work for me.
    i do have really severe reactions to a lot of them,
    even when most people don't have any side effects.

    i don't know what it is, really. but it makes me scared to try new meds, 'cause you never know if it'll make you sick or not.

    basically, there are alot of meds i can't tolerate, but a few that I can. there's no way to tell beforehand, so i just try them, and some of them end up working out.

    it's kindof a hit or miss thing.

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