Possible treatment for FM

Discussion in 'Fibromyalgia Main Forum' started by ilovepink4, Mar 9, 2010.

  1. ilovepink4

    ilovepink4 Member

    My doc put me on phentermine to help me lose weight that i had gained from taking cymbalta...phentermine is an old drug for weight lose and it is basically an "upper"....

    when i take a phentermine, my pain disappears and I am full of energy....i have to be careful not to overdo things because I will crash and end up in bed in agony....but, phentermine has got me through the majority of summer vacation so I can stay up to keep an eye on our boys and even be able to do some gardening....

    i read here, at prohealth that some people are taking adderall to help with energy so they can continue to work....

    I did a little snooping around on the Google (phentermine and fibromayalgia....adderall and fibromyalgia) and discovered that others had taken adderall for adult ADHD and discovered that their "brain fog" cleared up and they had energy and the pain was reduced or eliminated! There were a few people that had the opposite effect but most had good results....it was the same with phentermine....people discovered this by accident!

    Caffeine does the same thing....

    so, why doesn't someone develop a drug to do what these drugs are doing? I think they affect the brain and cause us to make more dopomine or something.

    anyways, I just wanted to throw this information out to everyone....maybe ya'll know this and I was the last to figure it out....BUT HERE IS THE KICKER-after i take it for a couple months, it doesn't work anymore! so, i plan on talking to my doc about what to do so I can still take it or maybe switch to something else? but, i would like to hear about other people who know about this or have suggestions on how this can keep working....

    the difference is amazing!!! i am normally housebound/bedbound and when I take the phentermine, i can stay out of bed all day, with no naps ! i can garden and I can actually go shopping for short trips.....

    i really wish this would keep working!
  2. butterflydream

    butterflydream New Member

    Have you lost any weight taking the Phentermine?

  3. satchya

    satchya New Member

    My Mom, who also has fibro, always feels her best when she is taking phentermine for weight loss. The problem is, she has to have it prescribed by a special "weight loss doc" in her area who charges about $60 a week for a visit to give "vitamin shots", check blood pressure and weight, a "counseling session" with a nutritionist, and a weeks' worth of phentermine. It's very pricey and very time consuming (she also works more than 40 hours per week).

    She asked her doctor to prescribe it for her, and her doctor said no. When she tried to stop taking it for a year or so, she was so miserable she decided it was worth almost anything to keep taking it.

    I, personally, drink a vitamin/caffeine drink every morning called "Energy Fizz" (I'm not a coffee drinker) that I buy at Costco. It's kind of expensive (works out to about 70 cents a day) but it gives me all of my vitamins, plus chromium, extra b12, guarana, caffeine, etc. I've noticed a big difference on days when I don't take it. I also have found that on days when I'm really, really exhausted (which is about 3 days a week) taking sudafed (which you have to buy from behind the pharmacy counter) makes a big difference.

    I also have to recommend getting some aerobic exercise every day. You will be more tired at first, but your endurance will gradually improve. And while you will never be able to keep up with "normals" you WILL gradually be able to do more and more and more than what you could do before. As someone who weighed 250 pounds 5 years ago, and now weighs 169 and is an aerobics instructor for the YMCA, I can personally attest to that fact. I can not keep up with the other instructors, I have tried to add strength training, and extra classes per week, etc., and I always crash. But I can do SO MUCH more than I could when I started this journey, and it has been all in baby steps over a period of 5 years.

    Just my two cents. Hope that helps someone!
  4. mrlondon

    mrlondon Member

    Phentermine decreases appetite by increasing the brain levels of Norepinephrine. This may be why it decreases pain levels. The effect wears off, possibly due to the brain compensating for this. Note that Cymbalta is a Norepinephrine uptake inhibitor, which means basically it also increases Norepinephrine levels in the brain. Unfortunately, it also effects other receptors like serotonin, and that perhaps why it causes the weight gain. Savella is a more selective Norepinephrine receptor inhibitor, and thus supposedly is less likely to cause weight gain, so it may be worth looking into, although it's expensive, and it may cause other side effects.

    - Mark
  5. Krista47

    Krista47 New Member

    My psychiatrist said that research is being done that has found women in particular get better pain relief when they take drugs for ADD and ADHD along with their pain meds. I noticed the effect when he put me on Focalin for ADD. I take it the same time I take my pain meds and I get much better and longer pain relief.

    There is a drawback. If you have nerve pain you might notice an increase in the nerve pain. I take a Focalin (a new and improved Ritalin type drug) every other day to minimize any nerve pain.

    Take care,
  6. loto

    loto Member

    to all of you for posting this information.

    I plan to talk to my doctor about this. This may help me with a lot of my problems right now, whereas the stuff I'm currently taking isn't working as well.

  7. heapsreal

    heapsreal New Member

    if you want to try something that your doc isnt worried about prescribing for energy that doesnt put the weight on, there are 2 meds i have used that have helped, edronax/reboxetine is a noradrenaline reuptake inhibitor, it will give you energy but can interfere with sleep,i got around this by only dosing in the morning, usual dosing is in the morning and at night plus i took only half of what is recommended which was 2mg, mainly because sleep is a big issue with me, i didnt lose weight with it bit many do, but i didnt put any on and it did give good energy, but the only annoying side effect i got was sweating but this might not happen with everyone, its worth a shot.

    The other is wellbutrin which is suppose to be a nroadrenaline/dopamine reuptake inhibitor, i liked this med, it gave a good steady calm type of energy and didnt affect my sleep, i only used 75-150mg a day. No weight gain from it either.some lose weight on it too.

    Everyone is different when it comes to medication, all you can do is try it and if its not for you stop taking it, obviously under docs supervision as some meds need to be tapered off.

    cheers! good luck with it.
  8. ilovepink4

    ilovepink4 Member

    there are lots of people who have had results with this type of medicine....I noticed that the summer before I took the phentermine, I resorted to "jet alert" which is just a generic VIvarin...it is the equivilent to 2 cups of coffee/caffeine wise.....so I tried it and the pain was reduced and it got me through the day until my hubby got home to take over supervising our little darlin's.....we have two of the most "spirited" little boys....isn't that a funny way of putting it? they have always been WILD! and they take everything apart/ or break it just because...so, they need to be watched!

    the following summer was when the doc agreed to the phentermine...i asked him once and he said NO....then, I lost 15 lbs on weight watchers and asked again and he said yes...but I also reminded him that he pressured me to stay on the Cymbalta longer than I wanted to and I just kept gaining and gaining weight....50 lbs and I am very small boned so it looked more like 100 lbs...and i am 5'4"

    Yes, I did lose weight alittle faster on the phentermine, but not like some people do......

    it definately makes you forget about food....you just don't get hungry and you don't think about what would taste good right about now....you stop having cravings!

    There is a website called phentermine dot com and the people there all talk about losing weight while taking phentermine....i found it when I googled FM and phentermine and there were two different people that posted questions about phentermine affecting their FM!!! one thought she was crashing the day after she took phentermine....and I think she was crashing because she had more energy the day before and over did it without realizing it....it was funny because I was looking for answers and to me, that proved that stimulants can help with pain and fatigue...

    interestingly enough, my doc hasn't said one thing about stopping my refills of the phentermine...i only take it in spurts...mostly in the summer because I have to be up and about more....

    when the weather starts to get colder here, the phentermine was starting to stop working anyways and I feel so horrible in the winter that nothing can save me while I live in this wintery climate....not enough sun...warmth...and too much snow and dampness...

    i thin;k my doc has let me continue because it is the only thing that has helped me....and I wonder if he heard about it helping people with FM and wanted to test it on me and see if it helped....and you don't want the person to know you are testing them or it might not work...maybe he didn't want to put any ideas in my head that it might help the fibro...

    now, I am going to tell you something that maybe I shouldn't....but, you are adults...when I was looking around on the internet, there are websites all over selling phentermine without a RX.....BUT, messing around with stimulants can kill you.....if you have any heart problems you might not even know about, you could have a heart attack...

    i think we all suffer from ADHD and call it fibro fog.....and that is why people are taking adderall and then finding out it helps take down the pain and fatigue....

    i want my doc to figure out a way to keep me from becoming tolerant to the phentermine....or taking something similiar....so , thank you for all your suggestions....

    i wish someone would hurry up and figure out how to control this FM...we have some really good clues here....doesn't anyone care about us????
  9. ilovepink4

    ilovepink4 Member

    I did lose weight a little faster on the phentermine....I had gotten up to 175 lbs....lost 25 on weight watchers....and it was creeping back on....so, when I was back to 165 I started weight watchers againthat was in early DEC.........lost 15lbs....then the doc gave me the phentermine....by the 4th of JUly I was down to 124..so, i lost 40 lbs and it was slow and hard.....and i met my goal of getting back into a bikini at age 41......then when winter came, the weight tried to creep back on....because of laying around all the time....so last summer, I was about 135lbs and didn't look good in a bikini....

    (ok, don't hate me for complaining about weighing 145...for some reason, i wear a bigger size than others that are my weight and I look big! I have a short waist and the fat has no where to go! just out! and i have tiny wrists and ankles so 10 lbs on me looks like 20 on someone with a bigger frame and more height) oh, and my only sister is a size 2-4....and always looks good in a bikini and has had two kids and NOT ONE stretchmark! but, her cross to bear is cellulite on her legs, spider veins, and bunions...and these are her complaints, not me saying this....personally, i would take every problem she has to be her size and eat what i want and not have FM anymore!!!!

    now my weight has crept up to 145....and I am doing the weight watchers point counting but, without exercise, i think i need the phentermine to help...i just haven't started taking it yet....it seems like a waste to take it when I still don't feel well enough to do much...in the winter, it just doesn't work as well as in the summer....but, at least I am paying attention to what I eat...that makes all the difference...weight watchers works whether you go to the meetings or do it online....or, just do it by yourself and just count your points without recording your points and your weight every week....

    i think you do a better job if you are in daily contact with people about your attempts to lose weight...there are tons are free websites that help you keep track of your weight loss, just like weight watchers, and you can post on the message boards....

    but, the weight watchers method works and you can do it by y ourself once you figure it out...

    i hope you wanted this info....sorry if this was overkill...
  10. ilovepink4

    ilovepink4 Member

    bump....hope to hear more stories and suggestions
  11. mrlondon

    mrlondon Member

    Basically, phentermine's effects are known to wear after a few months or even weeks. It's only approved for short term use because of that.
  12. butterflydream

    butterflydream New Member

    Hey thanks for going into such great detail, i appreciate reading all this.
    Your post has been very helpful describing weight watchers and all...Thanks
  13. simonedb

    simonedb Member

    is phentermine related to fen phen? remember that debacle in the 90s for fms patients, some docs discoverd it helped fibromyalgia too not just wt loss, but then the heart problems came out.
    maybe this is where the fms and cfs folks get separated as cfids people can have heart problems (google dr paul cheney) but fm maybe not so much. I tried stimulants in microdoses 9 years ago and messed with my b/p and heart (ie ritalin and ssris) but y'all do have me intrigued again about phentermine.


  14. fight4acure

    fight4acure Member

    I just started on Wellbutrin. I'll keep you all posted.

    Also, please keep this conversation going! Sounds like we may figure out something.

    What about Dr. Kerr's study? How is that going? Anyone know anything more about the prostrate cancer causing virus in relation to those of us with CFS?

    Fight :)
  15. wanderinbluedragon

    wanderinbluedragon New Member

    I've tried Adderall, Provigil, and drinking tons of caffeine but as you have said..these things only worked for a short period of time. I believe this is partly to do with the fact that we are normally put on a very low dose of the medications and as such our bodies develop a tolerance for them so they don't work as well. These medications are not only addictive, but can cause serious side effects as well. People with heart problems cannot take these and are not allowed to even have caffeine or take psuedophedrine because of the risks they pose. For me the benefits did not outweigh the risks and they were not lasting. My experience was only a day or two of energy from the medications..I have never tried phentermine. Anyway, that's why I think the benefits don't last.
  16. Misfit101

    Misfit101 New Member

    Phentermine was part of the "phen-fen" team. Fenfluramine was the other. I took these meds back when and ended up in the ER with chest pains. Was advised to stop them immediately. Lost 16 lbs in 16 days. Felt great. Too bad they were bad for you. As I understood it the Fenfluramine was the culprit behind the Pulmonary Hypertention. I tried the phentermine after that but it didnt work well. I have come to the conclusion that the only healthy way to lose weight is to take in fewer calories than I burn. Not easy when all I do is lie around...
  17. campbeck97

    campbeck97 New Member

    Yes I was one of those in the late 80's -early 90's that tried the phen-fen and for weight loss it was wonderful, had tons of energy and loss 66lbs very quickly, felt great on it. I later developed mitral valve prolaspe and now many years later have three heart valves that are leaking so not worth the permanent damage I received. I always took mostly the phentermine and far less of the fenfluramine as I just liked the the way I felt on just the phentermine verses the combination of the two. People please be careful taking all the stimulant drugs as they can reallly do some damage before you know it.