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    A ? for the doctor -neuropathic pain
    dnmhr posted:
    I have 2 questions about pain management. I have Hashimotos, Endometriosis, a moderately herniated disc, and fibromyalgia.

    I always had difficulty with pain control, especially after surgeries.

    If you go with the theory that Fibromyalgia is a central sensitization issue, because we know it is NOT inflammatory, wouldn't the misfire of pain signals cause difficulty with any pain issue, acute or chronic? For example, post surgery pain.

    1st ? So, is pain in any person with FMS-or neuropathic pain, going to be difficult to mange on an acute level?

    I know some people say nsaids help them. My thinking is they are working on any true inflammatory process going on in the body, thus reducing inflammation, thus reducing the level of pain. Any one taking an opiod may sense relief from pain; though it just may be the "knocking" out or euphoric effect it has on the person.

    2nd ? Should the focus be on the neuropathic part of the pain vs. using nsaids or opiates?
    annette030 responded:
    As a person with FMS, migraines, and DDD of the cervical spine, I would say not to focus on any one thing having to do with your pain, deal with them all. Of course, dealing with FMS causes its own set of challenges.

    I had surgery in January, 2011 to reduce the size of my breasts, that alone reduced my back, shoulder, neck pain a lot. I take half of the long acting pain meds that I used to prior to the surgery. I believe that the pain I felt there was amplified by the FMS, but getting rid of the pain trigger helped a lot.

    On the advice of a pain management specialist, I also added an NSAID to my meds about two weeks post op, after I stopped the blood thinner. He explained why this would help any post surgical patient and that made sense to me.

    Could taking them also be why I am doing so well on my pain meds though?

    After discussing it with my pcp who manages my pain meds, I decided to continue taking ibuprofen for now. I have some very early OA, and she, my pcp, felt that pain from that was perhaps triggering worse episodes of FMS pain. That also makes sense to me, so I am still taking it.

    My belief has always been that anything that helps control your pain even a little bit, might be useful when joined up with other things that also help a little bit. The cumulative amount of pain control may well be worthwhile.

    I take gabapentin as a help for FMS pain, I also take NSAIDs, opioids to change my perception of pain, and ambien to improve my sleep. As I KNOW that a lack of sleep changes my perception of pain. I also do a lot of stuff, my hot tub gets used daily, I exercise daily, stretch daily, etc.

    Take care, Annette
    CTBeth responded:
    Hello dnmhr,

    Persons who take opiate pain medicines do NOT feel any sense of being "knocked out" or "euphoric".

    Opiates help to relieve pain by acting in both the spinal cord and brain.

    At the level of the spinal cord, opiates interfere with the transmission of the pain messages between neurons and therefore prevent them from reaching the brain. This blockade of pain messages protects a person from experiencing too much pain. This is known as analgesia.
    Opiates also act in the brain to help relieve pain, but the way in which they accomplish this is different than in the spinal cord.

    There are several areas in the brain that are involved in interpreting pain messages and in responses to pain. These brain regions are what allow a person to know he or she is experiencing pain and that it is unpleasant. Opiates also act in these brain regions.

    Opiate medications seldom (1-3%) lead to addiction which is a psychological disorder. Other members of this community have posted excellent articles on this subject.

    Tolerance and physical dependence are NOT symptoms of addiction. These are normal physiological manifestations. If one abruptly stops taking the medication, withdrawal symptoms usually occur. If medically supervised, reducing opiates slowly under medical supervision reduces withdrawal symptoms.

    These medications help persons in severe chronic pain lead more normal lives and offer pain management on a central nervous system (spinal cord and brain) level. Seldom do persons in chronic severe pain experience euphoria nor do we feel knocked out.

    You may want to discuss this further with your MD. If you require this class of medication to control your pain, pleased get all of your questions answered. If your condition warrants this level of analgesia, it can change your life for the better.

    Best of luck to you. Are you considering surgery? My pain management MD worked closely with my neuro-surgeron through a few surgeries. I can say with confidence that my post-op pain was, for the most part, managed well.

    dnmhr replied to CTBeth's response:
    I have taken opiods, my complaint is they knock me out. I should have worded that better, saying it sedates me. Sedation is a definite side effect of opiods. The other side effects I get are nausea, headache.

    One effect I suffered from one particular opiod was feeling, "high". Some people do feel a euphoric effect, not all, so I should have worded that better.

    Pain control is a totally legitimate reason to use them. In fact, I just contacted a pain management doc to get info and the first thing they said is we don't prescribe narcotics. That sort of upset me. First of all, let me get in the door and get my coat off.

    The reason of my post is to learn. Thanks for explaining how opiods work. With chronic pain of FM, it's difficult to manage the pain as it more intensified than it otherwise should be. But then I wonder why when I have acute pain, it can not be controlled well. I think it is because the misfiring of the brain signals works the same way for acute and chronic pain. That's why I have asked to explain the affect meds have on acute vs. chronic pain.

    My last surgery (total hyster-due to endometriosis), I finally had an anesthesiologist who got fibromyalgia, and sedated me appropriately. My previous surgeries left me in so much pain when I woke up; they kept saying I shouldn't be in so much pain. My very first surgery, I was done later in the day, and they sent home late at night, without ANY pain medication.

    I am not considering surgery anytime soon. Right now my biggest problem is my herniated disc and the fibromyalgia. My back is no longer just hurting, it is going into severe spasm. My doc has me on neurontin(gabapentin), and flexeril before bed which helps me sleep and calms my muscles. It's working so so. This is another story, where I need a more supportive nature"026is their a support group for pain management here?

    Thank you for your replies. I hope I didn't upset anyone, by saying the wrong thing.
    CTBeth replied to dnmhr's response:
    I cannot imagine that you upset anyone. I was thinking that you may feel as if you need the opiate meds, but were thinking that they would just maker you tired- so you don't care about the pain rather than actually help. You've taken them, so you know your individual response.

    Actually, after you take the for a while those effects tend to resolve.

    Initially I was referred to a "no narcotic" pain management group. I tried all they had to offer and thought I felt improvement, but not nearly enough to function at an appropriate level. I was referred to the MD with whom I have been or over-five years.

    The first month on opiate therapy, I slept a lot. It took about six-eight weeks.

    Not everyone wants or needs to go that route, but, if you do feel that nothing else can touch the pain (you know what I mean, right?) it may be of value to look deeper- or at least have an MD who gives you options.

    Spasms are so horrible; they awaken me from sleep gasping.

    I hope that you find the help you deserve.

    Take care and try to feel better <3

    Kelly_30 replied to dnmhr's response:
    Hi dnmhr,

    I am sorry to hear about your struggles with FM. I have heard it can cause a lot of pain throughout the body.

    How long were you taking the opiates? As CTBeth said, it can take a little time for your body to get used to them. They used to nauseate me as well but now I never feel nauseated when I take them. When I switched to a couple of different opiates recently as my pain was no longer well controlled, I didn't get nauseated and I thought I might because they were stronger opiates.

    I am also on gabapentin and flexeril. How much flexeril are you taking at bedtime? I take one 10 mg tablet three times a day. A neurologist told me I could take 3 at one time if I needed it but it would knock me out and it definitely did! I felt more "out of it" than I ever have on opiates. But at night for muscle relaxation I take Valium. Valium is a potent muscle relaxer more so than flexeril. If the flexeril is helping "so so" you might want to talk to your doctor about valium. Activan is an even more potent muscle relaxer than valium. But understand that both valium and activan are officially known as benzodiapines or tranquilizers. They need to be taken with a little more caution than flexeril and tapered slowly or else severe withdrawal symptoms may occur. I have been on valium for 6 years and it continues to help with my pain quite a bit.

    dnmhr replied to annette030's response:
    The FM is so frustrating. On top of that you have migraines and disc disease. I had severe migraines for years and thankfully rarely get them anymore. I can't imagine.

    I think I need PT again for my back, and abdominal muscles. My abdominal muscles are very weak! Then I need to stick with an exercise program. I have 2 young kids and I work part time. I need to have 2 things to accomplish PT and routine exercise, pain control and energy!

    I do the Neurontin at bed, flexeril and I take Prozac which takes the edge of the FM pain and the anxiety that can come with it. It is one of the SSRI's that's supposed to be stimulating, and cause insomnia if taken before bed. If I take mine in the AM, I am tired during the day and up at night. Go figure. I think Welbutrin can help with energy and even be added with prozac, so I will ask my doc.

    You are right, if it works, it works. Go with it
    dnmhr replied to Kelly_30's response:
    My flexeril is 5mg, and prescribed 1-2 tabs up to 3 times a day.

    I only take opiods short term, when I am in a lot of pain or after surgery.

    I work part time and have 2 kids, so they suggested not to use them long term.
    CTBeth replied to Kelly_30's response:
    Ativan is a brand name for Lorazepam. It is used mainly to relieve anxiety.

    It is also used to treat irritable bowel syndrome, epilepsy, insomnia, and nausea and vomiting from cancer treatment and to control agitation caused by alcohol withdrawal.

    Lorazepam is in a class of medications called benzodiazepines. It works by slowing activity in the brain to allow for relaxation.

    Be certain to tell your doctor and pharmacist what prescription and nonprescription medications, vitamins, nutritional supplements, and herbal products you are taking or plan to take.

    Be sure to mention any of the following: antihistamines; digoxin ; levodopa ; medications for depression, seizures, pain, Parkinson's disease, asthma, colds, or allergies; muscle relaxants; oral contraceptives; probenecid ; rifampin ; sedatives; sleeping pills; theophylline ; tranquilizers; and valproic acid

    Your doctor may need to change the doses of your medications or monitor you carefully for side effects.

    I am prescribed Zanaflex for spasm as a PRN. I had no relief with Flexiril or baclofen.

    I was prescribed Valium for spasm post-op after both of my fusion surgeries. It worked so well, but neither my MD nor I wanted to add a benzo along with an opiate, so Zanaflex is okay.

    For me, if I could get adequate relief with non-opiate analgesia, I would LOVE to not have take any of this crap. I am (essentially) always trying to take less.

    However, if one needs that level of analgesia to live a semi-normal life than they can be a Godsend.

    I cannot imagine living without my SCS and, sadly, opiate analgesia. It's almost amazing how quickly I adjusted to them. I have less adverse effects with MSC than other agents, but the adv effects still are a tremendous bother. That, to me, is the major advantage of non-opiod medicines: less side effects.

    I'm just saying this as an observation, as I have not read any literature supporting this, but it appears that many MDs prescribe Tramadol as a first try when the non-opiods as no longer effective. Has anyone else noted this?

    One more question: Has anyone with FMS ever experienced spontaneous remission? Not just remission between flare-ups, but an actual full remission? My friend (since we were seven years old) has been unwell for years, but just got diagnosed a few months ago. It has been, literally years for her to get a solid diagnosis. I wish I could help her more.

    I read, on another community, about the Vitamin D problem. Can anyone tell me more about this? Is this so for all with chronic severe pain, or mainly FMS?

    I seem to awaken at night and am more tired during the day, so here I am at 11:30 PM wide sad, haha.


    Kelly_30 replied to CTBeth's response:
    Hi Bet,

    You provided a lot of excellent info on Lorazepam!! I've tried it before and it was too relaxing for me. I couldn't stop yawning and the room started spinning. lol!

    It is nice to hear you have had a lot of help with valium for pain as well. Since I started MS Contin, I have been extremely careful about taking valium. I did not take any last night as I was pretty tired and already felt relaxed. I noticed when I take it with the MS Contin its effects are additive. I didn't not notice this when I was just taking the short acting opiates.

    I have been on vacation all this week. I go back to work on Monday. This is the true test of pain management for me as I am in my greatest discomfort at work. I will let you know how I felt during the week next weekend.

    I was definitely prescribed Tramadol when all of the non-opiate medications stopped working or never worked to begin with is more like it. I was originally started on Motrin 800 for several years. I stopped taking that when I got an ulcer. Then I was put on Flexeril for 3 years by itself. It worked great in the beginning but began to be ineffective. I was in so much pain!!! I was getting regular massages (cost too much $$$ for the short time of pain relief given) and during a session I told the therapist how much pain I was in and the muscle tightness adds to the pain. She relayed that she had a patient who took valium for muscle relaxation and she said it worked great for her. It took forever to find a doctor that would prescribe valium. One doctor said she didn't prescribe to those under the age of 30 (I was 26 at the time). But I finally found a physician that was willing to help with pain control. I told her the NSAIDs were ineffective and gave me ulcer and that my massage therapist told me that valium was an effective muscle relaxer for her patients. She attested that it does help many people. So she started me on valium and said that she wanted me to take tramadol as needed for pain control. So at least for me tramadol was the next tier of offerred pain medications. Not sure about others here. ~K.
    Living one day at a time.
    dnmhr replied to CTBeth's response:
    Years back when I had excruciating rib pain my doc gave me every nsaid you could think of, then Ultram. I believe it is a non narcotic but supposed to act like an opiod?? It did nothing for me. Next try was Darvocet-which is narcotic. This did not help, either did vicoprofen. .

    I was diagnosed with FM 20 years ago by my primary care at the time, but after a referral to a rheumy, who really didn't think it was FM, I just lived with it. After my 1st pregnancy, I went into a flare and my old doc was no longer practicing here"026the new doc said it was a waste paper can diagnosis. I had numerous tests and everything was normal. The rheumy said he couldn't find anything wrong, said take this brochure on FM, and that I did not need a follow up visit. So I went years just living with it, until the rib incident. I found a local support group got a referral. I was diagnosed immediately at my first visit. The new doc decided to run some tests anyway. He ordered very specific blood tests. The results came back, severely low Vitamin-D, TSH was high end of normal, but I tested significantly high for TPO anti-bodies, had an ultrasound, which found a nodule, which was biopsied , which was hashimotos. Every doc that ever ordered a TSH, said my values were within normal. I tested positive on the mononucleosis antibodies, as having it at some time in my life and as having a flare at the time of testing. Down the line, it was found that my Ferritin level was low, though my iron "fell within normal limits". Some of my other Iron binding /saturation tests were abnormal, and I was referred to a hematologist. It landed up that I am ok, but need to supplement with Iron. I also take Synthroid now. I definitely still have FM. But all of this goes to show you, there can be something else going on, and you need a real good doc who listens and goes beyond the screening type blood tests. None of the specialists ever ordered the very specific blood tests. I know that was very long, but maybe you can guide your friend to make sure they look more deeply.

    I have never heard of a full remission. This question was once asked at our support meetings, and none of the officers heard of that, but one person did say she heard of it. Anything is possible though. Even though there is not a complete recovery, there can be times, when you feel very good, and times when you may flare up. Of course treating any co existing conditions is important, because they can affect the FM, and vice versa. Most of the people I know with FM, have some sort of co-existing condition, either neurological or auto-immune. IBS and GERD also seem to go along with FM. Another big coinkydink is endometriosis. No studies have proven a correlation.

    I hope there is a support group locally for your friend. I was extremely skeptical at first, but once I joined, I really liked it. A lot of support, a lot of caring and friendship. You are already a good friend to be concerned for her, the best thing you can do is (IMHO) is listen to her when she needs to vent.

    The vitamin D issue seems to be a big one now a days. My endocrinologist really keeps a check on it. She said we don't get enough of the sun and even people who do go out, put on sun block, this blocks the body from getting vitamin D. I know many FM folks have low Vitamin D, but I would think almost anyone can have a deficiency. You can get it in supplement, but it is a fat soluble vitamin, and can be toxic if taking too much. It's best to let the doc guide you in what you need to take. If you have any type of absorption issues, or it is too low, you may need to get it in IV form. Symptoms of Vit D deficiency can be fatigue, depression, aches and pains.
    CTBeth replied to dnmhr's response:
    Hi again.
    I was going to ask if you are a man or woman, but I looked back and see "endometiriosis" and a "first pregnancy", so this answers my question- duh-

    Tramadol= Ultram. Ultracet is tramadol with acetaminophen.
    My MD prescribed it for me to try for breakthrough as I detest Percocet. It didn't do anything for me, but this means nothing as my tolerance is insane. I've heard that it is a good med with minimal adverse effects.

    I appreciate your writing style. You capture lots of fact and speak very well, btw. I enjoy reading your entries.

    Can we know your first name to address you in this manner? I, naturally, am Beth. My family, being European, did not pronounce the "th" as American do, so my Beth is pronounced, as "Bet". That's all; no real mystery.

    Regarding Paula and a support group: I wish she could. She doesn't drive anymore and we live about an hours ride away, so we don't get to hang out as we did for many years. She does have a fine and lovingly- devoted husband, though. Still, for me (I do have a male partner, btw) I need the companionship/friendship of woman my age, too.

    My pain symptoms are well documented from an accident and failed back surgery. I cannot imagine the frustrations of living with pain and not being believed or respected. I'm glad that you were able, after so long, to get a diagnosis. I did read an article a few years back in which a local and well-renowned pain management MD in my area called fibromyalgia a "garbage can diagnosis". This sort of thing must make your head spin, right?

    dnmhr replied to dnmhr's response:
    ooops, those are only some of the symptoms of vit D deficiency, but they are the ones that stuck out in my mind...
    dnmhr replied to CTBeth's response:
    I am using hubby's acct becuz I can't find my password and they keep saying my email isn't registered, but it is...anyway, call me chelle
    annette030 replied to dnmhr's response:
    If you need PT to strengthen your back and abdominal muscles, ask your doctor if you can belly dance? I do it at night after my husband goes to bed. I use the TV Fitness Channel program "Shimmy" and DVDs that I have ordered on line. It will be one year for me at the end of this month. I have lost weight, without dieting at all, and I feel more fit, agile, and all round better. It does not change the amount of pain I have though. If you are up at night anyway???? It is fun and easy, I will never be a great dancer, but it is great exercise.

    It is really hard for me to get started, but once I do I hate to stop after one hour.

    Take care, Annette

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