FM pain

Discussion in 'Fibromyalgia Main Forum' started by momof3inks, Sep 1, 2009.

  1. momof3inks

    momof3inks New Member

    I haven't posted in a while, but I am having terrible neck, shoulder and upper back pain. right through the shoulder blades. Other than that I just fee achy alot. I take tramadol (50mg-100mg) 3 or 4 times a day. I also take cymbalta (120mg) but I'm still having pain. Does anyone else have this problem?
  2. debilyn

    debilyn New Member

    I have the neck, shoulder, upper back, and shoulder blade pain too. I feel achy every where else. My inside knees and elbows, and the bottom of my feet hurt too.

    I have tried Lyrica, Cymbalta, Neurontin, Effexor, and I can't think of what else.

    What has worked for me the best so far is 30 mg of ms contin 3x a day supplemented with 100 mg tramadol 2x a day and 5 mg norco 2x day.

    I stopped taking the rest of the stuff and stick to this regiment.

    It sucks, but I've been able to work. For that I thank God every day.

    I hope today is a good one for you all,

  3. Nanie46

    Nanie46 Moderator


    You should consider tick-borne infections as a cause of your FM pain and symptoms.

    It happened to me and alot of other people here.

    Here is a great paper by an expert with valuable info......symptom list about each tick borne infection p 22-27......

    Everything has a cause, including FMS and CFS.....they just don't bother to look for it, leaving you to suffer for the rest of your life.

    It is likely that chronic infections play a huge role in these symptoms.
  4. jaynesez

    jaynesez New Member

    is it? This is by far my worst symptom/complaint, and it is terrible! I don't have the all over pain from FM, just many of the other joyful symptoms and subsets; however I do have back pain, lower from spinal fusion in 2003 and the neck, shoulders, upper back & even upper arms at times thanks to a bad car accident in 2007. I'm nearly disable because of it, and what makes this so hard to deal with is that as long as you are verticle, you hurt! Anything that requires the use of your arms makes you hurt! I take a long acting opiod, along with another for breakthrough pain, and I'm still dying! Did your pain just start there for no reason or have you done something lately to perhaps cause trigger points to form? I sympathize with you dear, I was managing pretty well before this happened to me, now I have to rush home & lie down due to pain, and this of course aggravates my lower back! (sigh...) You probably have some major tp's there, but please let me know how this came about, hopefully it will be something you can get rid of. BTW, the meds you're on won't do much for this, I hate to say, but if you can get rid of the trigger points it will help it, as long as your'e not stuck to a desk eight hours a day, anyways! PS-Biofreeze helps with this, I use it daily!
  5. FibroFay

    FibroFay New Member

    I'm having the same trouble spots that you are struggling with!

    I don't post much because working on the puter agrivates these painful areas, at least for me.

    The seasons are changing. Where I live we have had a couple of Fall-like days and nights, with foggy mornings. This weather change always makes my fibro worse! The Pits! This too will pass.

    I'm taking Savella at this point. I thought I was having good results with it, but, this flare is BAD.

    I hope you can get some relief. Know you are not alone. Let us know how you are doing.

    Hugs, Fay
  6. gb66

    gb66 Well-Known Member

    I hope it's okay if I ask you a question in the middle of this thread. It's something I've been wondering about. I need to find a new doctor and I would like to request bloodwork to see if I have Lyme and possibly co-infections. Are there specific tests I should request and should I specify the Lab to send them to?

    I don't want to be too pushy with the doc but I have been ill with this for 31 years and have most of the Lyme symptoms, plus I had insect bites with large red rash prior to the onset of this illness. Sudden onset.

    Only one doc has suggested testing for Lyme but she moved 20 miles away before I had the chance to do any tests. I just don't have the strength any more to ride that far. Any advice you can give me is very welcome. Thanks. GB66
  7. Nanie46

    Nanie46 Moderator


    I have posted an answer to your question on the Lyme board.....just jump over there to find it.

    I am glad to help you.
  8. momof3inks

    momof3inks New Member

    I was tested for lyme and they said it came back negative. I do have high titers for CMV and EBV. I'm dying with pain today and have been hurting since last thursday.
    I went into the doctor yesterday afternoon and all he told me was that he didn't want to start me on Opiods because of the risk of addiction. (no past addiction issues..don't have an addictive personality)
    He told me to start taking Mucinex everyday. He also said that everyone with Fibro or arthritis had been having a bad day yesterday due to the weather here. So I know it wasn't just in my head. Or as some people have told me, "oh your just tensing up your shoulders because of stress and that's why you hurt". Well, even when I'm just relaxed and enjoying my small children, I HURT.
    It's so frustrating because I feel like I'll never get better. suppose to travel down to see my in-laws over the weekend and I'm dreading the drive & just the stress of staying up late visiting etc. They say they understand, but I feel bad when I have to lay in bed most of the day and my inlaws or husband end up watching the kids. It makes me feel like they might think I"m faking or something. So I always end up overdoing it to make everyone, "think I'm okay" even though I'm exhausted and hurting.
    Thanks for letting me vent... perhaps I should have another Lyme test??? I'll check the Lyme board for more details.
    (((Hugs to all)))
  9. momof3inks

    momof3inks New Member

    What is (contin) and norco? Is this something I can request from my doctor?
  10. Nanie46

    Nanie46 Moderator


    You are smart to suspect tick-borne infections as the cause of your illness.

    Lyme is NEVER ruled out by just a negative lab test. I cannot stress that enough.

    The tests are antibody tests and are not that accurate for many reasons.

    You will find much info on the Lyme board.

    Most people with lyme also have one or more other tick-borne infections also, such as bartonella (swollen lymph nodes, fevers) and babesia (sometimes have air hunger and sweats, but not always, maybe migraine like headaches and other symptoms) and ehrlichia.

    see pages 22-27 of this paper for coinfection info.....
  11. HarleyRidingGal

    HarleyRidingGal New Member

    Contin - short for Oxycontin and Norco is the same as Lortab, Vicodin, Hydrocodone.

    They are both narcotic pain medications. Oxycontin is a long acting pain medication and the Norco is a relatively short acting pain medication.

    They can be very effective in treating chronic pain conditions. Some doctors are terrified of prescribing them for fear the patient will become dependent while others see many benefits.

    I go to a pain management doctor who does prescribe pain meds for me and it has made a world of difference with my severe joint pain.

    You have to sign a pain contract which allows them to randomly drug test you, that you won't get any other pain medications from any other doctor and many other rules. This is more for their protection than yours, but it's been so worth it to me to be able to be more functional and helps control the out of control type of pain.

    I've been really blessed. My pain management doctor and his physician's assistant is really great with joint pain, muscle pain and FM pain. They treat patients like people. Not just patients and are open to alternative therapies, use updated imaging and testing equipment. The place I went to before I moved to this area of WA state was a hospital setting and so cold and unfeeling about patients and their pain. On my first visit I was drug tested and it came back negative for everything, of course. I actually got a chewing out from the doctor even though it was my first visit! I had never been on opiates before except after surgery, etc. Strange. I knew right then and there, this was going to be a bumpy ride! I thought that pain management places were all like that.

    They also will do a history to see if there are any "trigger" points towards addiction..i.e. past substance abuse problems, family history, etc.

    This is just my story with the two medications. I hope it helps. Just keep in mind that not all doctors agree with Opiates for pain relief and it's not for everyone.

    I wish you the best. Hope this helps.

  12. nink

    nink New Member

    I have been blessed by recently finding a physical therapist who knows how to work with chronic pain, FM, myfascial pain syndrome, and similar problems.

    She is teaching me where my trigger points and tender points are, and how to decrease the pain they cause. The first session she gave me a handout on how to work many of the muscles on the upper back, shoulders, and neck.

    She recommends using a tennis ball against a wall to get many of the trigger points. I also use a theracane on those points, and especially on my upper shoulders and neck.

    Numerous books are available now which illustrate the trigger points of FM.

    Yes, it is helping a lot, after just 3 appts with her. A weird thing happens, though - after any appt with her, even though her work is extremely gentle, I itch like crazy. If I don't go into the whirlpool at my health club for 1/2 hour or more within a couple of hours of my appt with her, I itch for 2-3 days, all over my body. Normally she recommends soaking in a tub with some simple, cheap additions to the water, but I don't have a tub. We think that histamines (from chronic inflammation all over my body) are being released. If I can't soak after an appt, I'll try taking diphenhydramine (generic Benadryl), but I'd rather get rid of the histamines.
  13. debilyn

    debilyn New Member


    I don't take oxycontin; what I take is called MS Contin. It's a morphine sulfate. And Norco is like Vicodin but with less tylenol in it. They are both opioids. I'm wondering what type of doctor you're seeing who won't prescribe opioids for you?

    I ended up at a pain management doctor who prescribes these meds and Tramadol. I complained relentlessly to my rheumatologist about my pain. My rheumy would only treat with Neurontin and Tramadol; and those didn't really touch the pain, though.

    She acted like going to a pain management doctor was some kind of punishment: "If these medications don't work for you, I'll just send you to a pain management doctor then." But being sent to the pain doctor was the best thing that happened to me since I got this DD.

    The pain doc explained the difference between addiction and dependency. He said that dependency can be worked through by weaning off of a medication slowly. He said that addiction happens to people who have propensities to addiction or addictive personalities--which I don't have.

    I'm not at all happy about having to take these high-caliber medications, but they have given me my life back or at least 50-70% of it back depending on the day. I still come home from work exhausted and lie down on the couch or bed.

    I don't do much on the weekends but go to church and rest for the upcoming work week. But at least I'm not laying in bed every day crying and writhing in excrcuciating pain.

    This FM pain is a monster; it wears one down both mentally and physically. It's horrible.

    I hope that you find some relief for your pain.

    Take care,


    DRAGONSGIRL New Member

    YES!!! It's horrible! Where the pain is concentrated in your neck, (feels like a lage chef knife just being stabbed into you over and over) and then runs down your shoulder blades and then down your back? When I couldn't stand it anymore I saw my Dr.. He gave me Soma muscle relaxers. They worked great! Put me to sleep for 4 to 5 blessed hours! Problem is they're very addictive so I only take one when I can't stand it anymore. Don't want to lose them all together! So I take them sparingly so he'll keep letting me have them. But they are little miracles for my neck and shoulder pain! Oh, I also had an MRI and X-Rays to rule out a physical problem. He said it may just be strained muscles in that area because basically everything we do (even when it's very little LOL) we lead with our head. Made sense to me. After about 4 months (of agony!) it just went away as fast as it started. Now I'm just back to my everyday agony. LOL LOL Hopes this helps you a little MOM.
  15. HarleyRidingGal

    HarleyRidingGal New Member

    Debilyn, thanks for explaing that there's a difference between MS Contin and Oxycontin. I had no idea the two were different.

    I agree with you about taking them. It has given me some of my life back as well.

    My pain doc also explained the difference between dependency and addiction. You're quite right. Dependency is not addiction. Bottom line.

    I wish that more doctors would treat the individual as well as the disease. Not just cookie cutter ways of treatment. What works for you and I may not work for someone else and my road to get to this point has been pure you-know-what just to find the right everything for me. Sometimes it's a month-by-month thing depending on the symtoms and pain level.

    I was told for two years that I had MS. Then of course it's all in the head kind of treatment, or here's a bunch of pain pills kind of treatment. It was so frustrating but I just kept on and knew one day, someone would listen.

    Someone I know, had medical treatment in another country which required an ultrasound. The doctor was pointing out all the organs in the body. "Here's your stomach, there's your gallbladder....etc."

    She interrupted the doctor at that point and said, "I don't have my gallbladder. That was removed two years ago!"

    Just a little example of the range of care in the medical field. When my doctor in FL told me it was impossible that I had fibromyalgia because of her only FM patient being bedridden, I said..."so if 2 patients come in with colds, are their symptoms exactly the same, with the exact level of severity?"...

    And just a little food for thought..keep in mind that not every single doctor got perfect marks or got 100% on their exams...someone had to be at the bottom of the class.

    I'm sure every one of us on this message board has a story to tell. We should all write a book! I'm sure we would be on every talk show.

    God Bless.

  16. debilyn

    debilyn New Member


    I want to say hi and comment:

    <<<"I wish that more doctors would treat the individual as well as the disease. Not just cookie cutter ways of treatment. What works for you and I may not work for someone else and my road to get to this point has been pure you-know-what just to find the right everything for me. Sometimes it's a month-by-month thing depending on the symtoms and pain level." >>>

    You are so right on!

    <<<"She interrupted the doctor at that point and said, "I don't have my gallbladder. That was removed two years ago!"">>>>

    You've got to be kidding! LOL! That is downright scary.

    Take care and blessings to you,

  17. jaynesez

    jaynesez New Member

    say good job Nink!! You are working on the bane of our existence, trigger points! So many unnecessary surgeries are caused by the little painful buggers, and people just don't know about them! I have a massage therapist who is also well trained in FM & tps, and other than my pain meds she's the only thing that helps. I also have a theracane but its hard for me to use because of my hands. Momof3 you should go see a pain mgmt doc, because the meds you're currently on is not going to cut it unless you can get rid of the problem(s) causing the pain. If I didn't have to work I would be stretching and working on myself as much as possible (to save $) and I truly think it would help. You've gotten some great suggestions along with the knowledge that others feel your pain, down to the tee.
    Good Luck,
  18. momof3inks

    momof3inks New Member

    I do see a pain management doctor...But I guess maybe I need to see if there is another doctor in my area. Thanks for all the advice! I wish I could try some other type of pain reliever as I am unable to function at this point.
  19. HarleyRidingGal

    HarleyRidingGal New Member

    I was wondering about the difference, for you, between your MS Contin and Tramadol as far as pain relief and side effects.

    The Vicodin works so-so for me for immediate relief. It makes me more tired than anything and nauseais a constant problem. The Oxycontin works well for me for the longer term pain relief during the day time but...have heard Tramadol might be a better choice.

    Right now my pain management doctor and I are trying to find something at night since for some reaon, that is just the worst pain time for me late night to early morning hours.

    Do you have this problem or have you?

    My FM has been pretty much in control until this past year until now and the doses have been up, then med changes, etc. so many times I feel like a pill popping queen.

    Just wanted to ask someone who has taken the tramadol and how it compared with other drugs for pain control and also side effects.

    I have had to be careful for malabsorbtion problems because I have severe problems in my intestines. This DD huh?

    Would appreciate your input. Thanks so much.


  20. debilyn

    debilyn New Member


    I took just Tramadol and Neurontin for the first couple of years. I don't think the Neurontin did much at all, and when I finally weaned off of it, I realized that it really didn't.

    The Tramadol just wasn't doing enough or it didn't give me a consistent level of relief. I was taking 100 mg. 3 x a day.

    When I started with the pain managment doctor six months ago (I really am rather new to this DD; I've only had it for 3 years) he freaked out at the amount of Tramadol I was taking; said that he was worried about seizures.

    He suggested dropping the Tramadol to a total of 200 mg a day and adding the MS Contin. Well, actually the MS Contin is where we ended up. He tried Lyrica, Cymbalta, and the Fentanyl patch. The first two didn't do anything for me, and the patch helped the pain fantasticly, but it made me so sick.

    We tried a bunch of stuff to get to where I am. The MS Contin is time-released, and it helps me alot. I've heard others say that it didn't do anything for them. Like you mentioned the other day (I think it was you :), that we're all so individual in this thing that we have to find out what works for each of us.

    You probably know of this site already, but it has helped me alot to know how medications helped other people:

    I'm not sure I answered your question; I'm happy to clarify.

    Take care and blessings to you,


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