I Need Advice With My Fibro. Pain

Discussion in 'Fibromyalgia Main Forum' started by FibroPainSufferer, Jan 11, 2007.

  1. FibroPainSufferer

    FibroPainSufferer New Member

    I was diagnosed with fibromyalgia about 3 months ago but I believe I’ve had it longer than that but it just didn’t show it’s ugly face until I had a traumatic thing happen to me at the end of September 2006. Anyway, my doctor has tried a few different medicines & played around with the strengths. I just saw my doctor on Tuesday & I told him that I think we finally found the right stuff. I take Neurontin, Flexeril, Naproxen & Vicodin during the day and before bedtime 1 Percoset. I told my doctor that for the most part this combination is finally working but on days when I have a lot of stress (I’m getting ready to go through a nasty divorce) I’m in terrible pain. He then tells me that he wants me to stop taking the Vicodin & Percoset because they are addictive. When he said this I felt like crying right there! I told him that I had just come from a lawyer's office & I am starting the divorce because I’ve finally found something to control my fibromyalgia pain & now he wants me to stop 2 of the medicines. My doctor, who by the way is a pain specialist, knows that I’m divorcing my husband due to abuse & that I’m afraid of him. I also have anxiety, panic attacks & depression so I’m terrified of the day my husband finds out I filed for divorce. And yes I do see a psychiatrist, I have been for 11 years now.

    My question to anyone who suffers from fibromyalgia is this…should I find another pain doctor who won’t take me off these meds until after my divorce or is there something I can purchase over the counter or in a vitamin/health food store that will help me relax & help me with the pain? I don’t know what to do & I’m now on a tight budget so I can’t keep spending money on these so called “miracle cures” you see on the internet!

    Thank you for any advice!!!
  2. aim4perfection

    aim4perfection New Member

    my heart goes out to you . i really can't tell you hwhat to do. Only you can know that. Did you try asking your doctor if it can wait till after the divorce is finalized to go off the vicodin and percocet. if not i guess i would probably consider another doctor perhaps.
    sorry you have to go through this i will keep you in my thoughts

    aim
  3. FibroPainSufferer

    FibroPainSufferer New Member

    Thank you so much aim! I heard the other morning that on the Today Show, Matt Lauer was going to feel what it was like to have a hot flash. I think they should create something for all doctors to know what fibromyalgia pain feels like! Maybe they would be more sympathetic to us!

    Thanks again aim for just responding! I’m going through all kinds of emotions…depressed, feeling alone & scared!!!
  4. JLH

    JLH New Member

    Have you tried the antidepressant Cymbalta? It really helps on fibro pain. You might want to do a search on it and read up--a lot of members here take it.

    The usual dose is 60 mg daily; however, I have to split mine in 30 mg in the AM and 30 in the PM so it doesn't make me too drowsy all day.

    I take Neurotin, Cymbalta, and Zanaflex (at night). I also sleep with a CPAP machine and oxygen.
  5. TinaJones

    TinaJones New Member

    I'm sorry for all the stress you are under. My opinion is to definitely see another pain doctor. If you are in terrible pain and the medicine is helping you - why should a doctor be the person to make decisions for you? I've been through about every situation with doctors and pain management. There is a difference between physical dependence (which happens to many of us on long term pain meds) and addiction. I think the statistics for someone with chronic pain and addiction is about 1 to 2%.

    There ARE many alternative pain relief options; I'm not saying not to try those. However, I also think that pain meds have their place, too. Not all people can tolerate them or choose to - but, again, this should be the choice of the patient. After being misdiagnosed and mistreated by many doctors, I finally realized that a doctor is not the be-all, end-all authority. I now view my doctors as my "consultants" - I'm paying them for their opinions in their field of expertise. Ultimately, I need to make the choices that are best for me. Side note - I'm not down on all doctors...I finally have a wonderful team of them. :)

    Anyway, I just really encourage you to seek out a doctor that will really listen to you and not just "cut" you off of something that seems to be working for you. Good luck, take care --Tina
  6. IntuneJune

    IntuneJune New Member

    I have gotten a lot of help with pain through myofascial release. Some PT's have the training (though usually not from their formal training) and massage therapists. I have had different "kinds" of MFR and the John Barnes MFR therapist was the best.

    Good luck to you.
    Fondly, June
  7. Mini4Me

    Mini4Me New Member

    Get a new doc. You deserve proper pain treatment. Go to
    americanpainfoundation.com to see what you can do about getting your pain properly managed.
    You don't need to suffer at the hands of your doc!
    Best of luck,
    Mini
  8. applecrisp

    applecrisp New Member

    I'd see about a new Doc myself. I totally understand when you finally find something that works and the doc wants to take you off for any reason...especially addiction.

    If I need pain medication everyday for the rest of my life, does it really matter if its addictive??

    Fibro is worse with stress, now is definately not the time to stop the meds for you. Get another opinion hun...you shouldnt have to go thru this difficult time consumed by pain.
  9. lrhood

    lrhood New Member

    I have had Fibo for 8 years now. This seemed to come around with 3 major surgeries, with in 3 months. I Finally have somethings that help. As you know you go to the Dr. and tell them the complaints, they think your nuts, until you run across a DR. that listens.

    My NEW Dr. put me on Provigil, I take this early in the morning. I can think, not tired anymore, feel like my old self. Always thought that if I had more energy, I could deal with the pain better. And THAT one works for me.

    I still have the aches and pains. I take. Tramadol, darvocet, flexeral. I sort of gauge how I feel and if and what I need. ( my husband and I are in the medical field, well I dont work anymore ) The way I figure it if it is NOT working, why take it. These three work for me. AND a hot bath. Also excersising. LIGHTLY, this has helped me mentaly and physically.Since I haven't really found anything that REALLY works. There is not ONE thing that works for anyone.

    I bought a "Shuffel", an ipod thing, loaded it with my favorite music, and listen to it. This really picks my mood up, of course what I play depends on how I feel, and how sensitive I am to music that day.

    Also picked up the book "You on a Diet". ( this is not really a diet, but a change in eating habits) More of a natural way to things, rather than stuffing myself. Lost weight, more energy, and the Flax in oatmeal has helped with the inflamation. My husband has joined me on this one ...LOL. And our grocery bill has gone a WAY down, I was eating to make me feel better, hence the big butt... lol

    I feel for you, been through the divorce thing, the stress, the lonelyness. You are not alone.

    I will put a word out of caution. My mother-in-law took Nerotin, and had a very bad reation to it over time. As with all this stuff that comes out, any changes in how you feel, or talk, after starting it, CALL the DR. The antidepressants, can do some interesting things, to different people. Look the stuff up and read the side effects. I am one of those people who get the side effects that say .001 percent of the time. :( I am very sensitive to meds.

    Best of luck ! Hang in there.
  10. NyroFan

    NyroFan New Member

    Hello, nice to meet you here.

    My best advice would be to rest, rest and more rest until
    you can find a doctor who can work with you on your pain.

    You hang in there and stick around here.

    nyrofan
  11. California31

    California31 New Member

    This isn't a particularly easy call...the addictive "thing" drives me nuts.....seems very Calvanistic.....at the same time....it's important that you are getting the BEST pain relief...and most people I know don't get alot of relief from viocodan..also it seems your psychiatrist should be in on the meds determinations as well.(where do you live?)...You are in a major transition and need all the support you can get....I think prickles info is so good....in my own life experience....emotional stress has been such a trigger for physical pain....(up till now, let me add)...has your psychiatrist suggested a support group, I've foud such a group can be very helpful....during life transitions...and some of them are free....Sending you wishes for peace in your life..Glad you posted.
  12. matthewson

    matthewson New Member

    It has the effect of a mild narcotic, but without the addiction potential, although you have to wean off of it if you want to stop taking it, you just can't go cold turkey. Dr's usually are willing to prescribe it because it is not a controlled substance.

    I take it with neurontin and it knocks my pain level down to a tolerable level. I have not had to increase my dose in the 3 years I have been taking it. When I was on narcotics, I kept developing a tolerance to them and had to take increasing doses.

    Something to consider if you haven't already tried it.

    Take care, Sally
  13. FibroPainSufferer

    FibroPainSufferer New Member

    I just want to thank everyone who replied!!! It means a lot to me!!! My favorite advice was from Nyrofan who said “rest, rest and more rest” I would love too!!!!! Since leaving my husband, I’ve had to pick up as many hours at work as I can because he created a lot of debt & all of it is in my name. He couldn’t get his own credit cards because he ruined his credit before we met & I didn’t find this out until it was too late. I know my fibro comes from the worry of the divorce & his reaction, paying the bills & not getting enough rest! Then today I filed for spousal support so I’m terrified when he finds out.

    I think I got a little side tracked there…sorry! When my psychiatrist prescribed Klonopin for me, people said “you are going to become addicted” well guess what, I didn’t! I don’t get this “high feeling” that people talk about, instead I was able to actually leave my house. For ten years I feared going anywhere because I thought I would have a panic attack. I can’t tell you how many times I’ve told people “I would rather live 10 years without panic attacks & being able to go places & not be afraid, then live 50 years & not being able to leave my home or be around people” This is how I feel about the pain medicine issue. Living in pain is not living!!!

    I think it’s time to find another doctor also & I’ve already thought about talking to my psychiatrist. I’ve been seeing him for 11 years now & he is the best!!! Unfortunately, he’s getting close to retiring but I can’t think about that now! The pain doctor did have me try Ultracet which I think is the same as Tramadol but it didn’t work for me. I don’t really exercise anymore but I do like to stretch in the mornings…it feels good while I’m doing it & right after but if something happens during the day to upset me or stress me out then the pain comes back. I am going to try the Flax, I noticed a few people mentioned it & I’m going to try & eat better too. Right now I’m buying cheap food like Oodles of Noodles, tuna, etc…because of my current financial situation but hopefully that will change soon!

    I’m so glad I found this site…a woman in the pharmacy was telling me about it the other night while waiting for my prescriptions. Thank you again & I hope you are all either pain free or at least having a good day! Have a Wonderful Weekend!!!
  14. BlackPanther

    BlackPanther New Member

    I have found that relaxation meditation along with hot epsom salt/Dead Sea Salt helps a lot, as well as the smell of lavender (??????). I have had fms off and on for over 30 years and only diagnosed in 2001. I think you should get in touch with all of your credit card companies and explain the situation truthfully. Most of them have a plan that will significantly lower your payments for a specific period, usually a year. If your debt is over 10K, maybe you should file for bankruptcy. You may also qualify for disability--either through work, or SSDI, if you live in USA, or disability if you live in Canada. You can make an appointment with your local Victim Services Center if you are having abuse issues. Check you local County website to see which services they have available. Good luck. You must not "OWN" your pain. Reject it. Tell your brain not to process pain messages. Do you go to a rheumatologist? Perhaps you should see one that specializes in FMS.

    It also helps to just release your burdens onto whatever you consider a higher power, even if it is your own higher self. Best of luck, and don't give up. You are a worthwhile human being.

    I also agree with the respondant who suggested the calcium and magnesium. My rheumatologist (who HAS fms) recommended Malic Acid with Magnesium, as well as CO-Q-10, a regular multi-vitamin, B Stress pills, and I also take one of the Glucosomine/Chondroitin/MSM over the counter meds which helps tremendously. I am severely allergic to all opiates, but I can take Ultracet, however, it Tylenol Extra Strength is just as effective. The suggestion for Cymbalta is a good one also. Maybe you should change psychiatrists!!! He/she should have figured this out.

    Hang in there.
    Panther
  15. FMFeem

    FMFeem New Member

    First of all your FM is not caused by your current situation, but stress is intensifying the FM. Mine is always with me...I feel like a bruised tomato all the time. Not just in the 18 tender spots but all over my body. I started having my symptoms about 10 years ago. About 5 years ago I went to a rheumy who put me on Actiq transmucosal lollipops (this is an opiate). Later he added the Duragesic Patch (the same drug just in patch form). I would wear the patch for 72 hours then replace it with another one. For my "breakthrough" pain I would use the lollipops. When you are in pain you don't get the "high" that people who use it recreationally do. My rheumy finally realized his error and took me off of the Actiq but left me on the Duragesic. I didn't think that I was addicted, but I started to try and find a hard candy that had the same taste as the lollipop. Just with the Duragesic and the other meds I was on I was slightly functional but I slept 3 1/2 years of my life away.

    I moved to Georgia for Louisiana and had to find a new rheumy. First I went to a Family doctor. She saw me 1 time and jerked me off of my antidepressent (Serzone) (which I have been on for 10 years...my muscle relaxant/restless leg syndrome med Zanaflex, my anti anxiety medicine Xanax. She did give me a RX for 1 patch to get me through to the new rheumy appointment.

    When I went to the "highly reputable rheumatologist" he verified the fibromyalgia diagnosis, undiagnosed my Sjogren's and pulled me cold turkey off of the Duragesic patch. Now remember that I have been on this CII narcotic for 5 years and I had already been on this last patch for over 4 days so its' effectiveness is already starting to wear off. I made a comment to him questioning him about the withdrawal symptoms. He said I wouldn't have any. He then referred me to a pain specialist (who I couldn't get an appointment with for 10 days. Those 10 days were a living hell. I went 5 days straight on about 2 hours of sleep, I was having nausea, vomiting, diarrhea, I couldn't eat, I was having these muscle spasms that included extreme kicking and jerking of my arms and legs, I was suicidal...by the time I got into the pain specialist I was told that I was the worst case he had ever seen. By that time I looked like an old limp mop.

    My original rheumatologist turned me into a prescription pain addict. Recently on CSI they showed an Actiq (street name percopops)...Just seeing it on TV hit me like a brick wall. I couldn't believe that just seeing it on TV would bring back the craving. For weeks I just obsessed over it.

    If you rely on these drugs through your divorce, I'm afraid that you will do like I did and take them assuming you are taking them for the pain, but actually use them as a "crutch" when you are down.

    I notice that you are not on any antidepressent or anti-anxiety medication. Talk to your psychiatrist about prescribing those. They will help with the anxiety, panic attacks and depression.

    I have been on one of the strongest pain medications prescribed...the pain still exists with FM, you just sleep all the time. I don't know what the answer to FM pain is, I'm still looking, I just don't want to see someone else go through what I went through. I am now and will always be an addict. Sending you "soft hugs" and low pain days.
  16. FibroPainSufferer

    FibroPainSufferer New Member

    I appreciate you both taking your time to respond to me. Being able to talk to people who are going through the same thing as I am is good therapy! I am so glad I found this site!

    Panther, my psychiatrist is the one who is awesome! I’ve been seeing him for 11 years now & that’s how long I’ve been on Prozac & Klonopin. It’s the pain specialist who I’m having problems with. Can you believe that even after telling him that I’m on Prozac, he prescribed Effexor for me. Thankfully, I’ve done a lot of research on all my conditions & I knew that Prozac & Effexor couldn’t be taken together. When I questioned the pain doctor, he just said “Well ,talk to your psychiatrist” he seems to say this a lot. When I told my psychiatrist about the Effexor, he said NO WAY!!! He was shocked by this & other things the pain doctor has done! Thank you for your other suggestions, I’m going to look into those also.

    FMFeem, it sounds like you’ve been through a lot & I really do appreciate you telling me your story!!! It’s just such a hard call! Of course I don’t want to become addicted yet I don’t want to be in pain. I need to be strong & find ways to relax because there is a lot of stress ahead me now. I don’t know if you saw it but I posted another message about relaxation CD’s because the pain doctor recommended listening to music. If you’ve tried music & can recommend a good CD or tape, I would greatly appreciate it! Maybe coming home at night & instead of putting the TV on, I should try one of those CD’s.

    Last night was my first time on this site & I have to admit that reading what people have to say & responding to other people's topics, has been great therapy for me! I’m talking to people who understand fibro & at the same time I can help other people too which really makes me feel great!!!

    Thank you once again!!!!!