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    Pain isn't an MS symptom?

    I spoke to neuro's office this AM. They told me pain isn't really a symptom of MS. I'm confused. I have pain-- headaches, pain in my neck and shoulders and my legs. I take Tylenol, but it doesn't really help. Is this pain caused by something else? There's so much I don't know and I'm not sure I'll ever figure this out.
    DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

    "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
    - 2 Corinthians 4:16

    #2
    Originally posted by smalltowngirl View Post
    I spoke to neuro's office this AM. They told me pain isn't really a symptom of MS. I'm confused. I have pain-- headaches, pain in my neck and shoulders and my legs. I take Tylenol, but it doesn't really help. Is this pain caused by something else? There's so much I don't know and I'm not sure I'll ever figure this out.
    Hi smalltowngirl

    I'm no expert on pain, as mine has always been temporary and transient, thankfully. But many persons with MS do suffer from chronic pain.

    This is from the National MS Society website:

    Pain syndromes are common in MS, ranging from acute to chronic, from the “MS hug” to pain caused by spasticity, from neuropathic to musculoskeletal pain, and more.

    In one study, 55 percent of people with MS had “clinically significant pain” at some time and 48 percent were troubled by chronic pain. This study suggested factors such as age at onset, length of time with MS and degree of disability played no part in distinguishing the people with pain from the people who were pain free. The study also indicated that twice as many women as men experienced pain as part of their MS.


    Full article:https://www.nationalmssociety.org/Sy...-Symptoms/Pain

    Not sure why your neuro office told you that.

    Hope you will get some relief.

    Take Care
    PPMS for 22 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Hello, I get electrical pain in shoulder and neck I know it’s not fun

      Comment


        #4
        After I spoke to neuro office, I had my phone assessment with Cleveland Clinic, so I asked her about this. The nurse said pain was absolutely a symptom of MS. She explained that MS manifests as abnormal sensations and that pain was certainly an abnormal sensation. She further explained that with a lesion on my T-spine, it can cause all sorts of strange sensations.

        That doesn’t make it go away, but it’s such a relief to hear what I’m feeling is “normal” for MS.
        DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

        "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
        - 2 Corinthians 4:16

        Comment


          #5
          Rain

          I know this sounds crazy but I get pain right before we get bad weather,maybe I should be a weather man! Lol

          Comment


            #6
            For a long time it was thought that pain was not caused by MS and the pain was only a secondary symptom. More recently it has been accepted that pain very much can be caused by MS. Is your Neuro older? I have had quite a few over the years and the older ones seem to cling to the MS doesn't cause pain thing.

            Fortunately I get my pain pills from my PCP so it doesn't matter what my Neuro says. I've been seeing the same PCP for about 12 years now and been on pain meds for 9. My dosage gradually grew from 1-2 a day to 4-6 a day of 5mg vicodin. I know that some of that is addiction rearing it's head but I work 60+ hours a week and without some sort of something to knock down the pain I probably couldn't handle half that work.
            Rise up this mornin, Smiled with the risin sun, Three little birds Pitch by my doorstep Singin sweet songs Of melodies pure and true, Sayin, (this is my message to you-ou-ou

            Comment


              #7
              Of course its a MS symptom

              and I'v been in chronic pain now for 4 years now. every type of pain in the book - stabbing,shooting,burning,electric shock,radiating,stinging,pounding,................ .........

              it's always waking up thinking how to get thru another day with this pain

              only time I had a bit of relief was when I overdosed on my gabipentin one time by mistake (doubled my 12mg)

              Comment


                #8
                TaoWarrior and msser,

                Thanks for your reply. My first neuro was actually fairly young. Who knows why he thought this to be true?! I have since learned that pain is most certainly a symptom and got a second opinion with a different neuro. I'm on Gabapentin and Cymbalta now for nerve pain. Just kind of waiting for that to work.

                msser, I'm so sorry you're dealing with so much pain. I wish you the best.
                DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

                "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
                - 2 Corinthians 4:16

                Comment


                  #9
                  Originally posted by Carlyle View Post
                  I know this sounds crazy but I get pain right before we get bad weather,maybe I should be a weather man! Lol
                  I though I was the only one! ♥️
                  I guess we could both find out whether new station because seriously I can always tell when it’s going to rain I get the worst pain and I never had this before my diagnosis of MS

                  Comment


                    #10
                    After all those years of ignorance the National Multiple Sclerosis Society came out and told the truth. Our bodies can really hurt. We are just not allowed to tell anyone.

                    No one ever admits to being in pain without immediately insisting that they do not like to take any drugs because they “don’t like the groggy feeling”. Pain equals drug seeker.

                    Since Michael Jackson’s death there has been a war on pain patients and their doctors. The DEA started raiding doctors offices, they started forcing doctors to account for every controlled substance prescription they wrote and even limiting the number of controlled substance prescription pads they were able to obtain.

                    Then a psychiatrist in New York threw his weight around at the CDC. He got a group of five non-medical men behind closed doors and came up with an arbitrary morphine equivalent limit intended only as a guideline for primary care doctors who were prescribing pain medication for the first time.

                    The result was that this limit became law in almost every state. It was applied not only to patients who had never taken anything to long term pain patients who were being treated by a licensed pain management doctor. These patients were either abandoned or their dosage was cut so drastically that they were suffering unbearable existences. They turned to street and sought out heroin. They started dying.

                    Then the death report statistics were published creating an hysteria. It was aimed at showing a correlation between the prescribing of the opiate derived “opioids” and accidental deaths. They were taken at face value. There were a number of facts that were omitted. People who are in pain are more likely to fit into the category of people who have serious potentially life threatening conditions. Whenever someone dies there is a blood test done to determine if they had drugs in their system. If the answer is yes there is no further investigation into the cause of death and they are added to the statistic. Almost everyone who dies of an “overdose” has had other drugs in their system and alcohol, which has a powerful influence on mortality, is never mentioned.

                    There are many other facts that make the whole opioid crisis a sham. The most telling is that the number of presc written has dropped drastically and the death statistic is rising faster than ever. Common sense tells me that the culprits are not doctors and their patients.

                    Bottom line: people with MS and everyone on pain need to unite and create awareness and demand relief. There are many many cancer patients who are not being treated during their last hours before death. The fact is there is no medication, treatments, surgery, meditation or diet that will fix pain. God put the opiate poppy on this earth so humans could find relief from suffering. Nothing else has succeeded.

                    Time to speak out without shame and end the ignorance. If you doubt anything i am telling you research it for yourself.

                    Comment


                      #11
                      Pain vs meds

                      I am the type who hates taking pills. BUT when I can’t stand it I do.
                      I'm a caregiver and my latest client was addicted to pain pills. There’s no doubt she had pain, but once I got her up moving and stretching she started to feel better. It took me a year to ween her off, she, at 75 she was a drug addict. Only because she had a quack who found it easier to write a script instead of helping her.

                      That is why we now have to suffer, the endless aches and pains that never subside. Not to mention the endless ER Drs who wrote norco, codeine and even morphine (for me personally) for anything I explained to them. I did NOT want them but because of last 25+ years of the easy way out they(dr) bred more and more addicts and and it was an easy way for addicts to get their “fix”. Go to the ER and say my back hurts, say I have a headache and out comes the script pad.

                      Now that the time has come of reality admitting our MS pain is real we must suffer the mistakes of yesterday’s.
                      I still hate pills and do everything I can to avoid them. We invested in a spa, I pay for deep massages, I have just flat suffered and tried what I can to avoid them, but damn it if I ask for something I NEED not want it.
                      on the flip side, not all Dr are quacks and their hands have been tied due the bad apple. Now it’s too late we are pushing water uphill to get our help.
                      They (government)are now trying find the middle ground and we are caught in the battle.
                      im not bashing all docs, just the ones who didn’t see past yesterday.
                      As most of us MS sufferers we take one day at a time, each hour at a time, when the legs,feet,back,neck all hurt so bad we can’t see straight. I hate not being able to just stand and walk across the floor. I hate the admitting I’m not what I used to be.

                      I pray someday there be a miracle to end this cycle, but until then, I get up each day a push through because I have it in me (today) to not let this beat me. I’ve always been a fighter and survivor. Now I’ve learned to fight to live the day the best I can. I have learned the difference in surviving and living life, I will live life and keep my attitude that today is a good day, I’m here with ones I love, I’m still mobile just a little slower but maybe it’s time we do slow down and enjoy the good. I’m always “fine” when asked, yeah no. But why bring others down? It’s not going away so why dwell. There may come another day when I blame,hate and cuss......but not today!!!

                      Comment


                        #12
                        Hi DonnaH.

                        Now that the time has come of reality admitting our MS pain is real we must suffer the mistakes of yesterday’s.
                        I still hate pills and do everything I can to avoid them. We invested in a spa, I pay for deep massages, I have just flat suffered and tried what I can to avoid them, but damn it if I ask for something I NEED not want it.
                        on the flip side, not all Dr are quacks and their hands have been tied due the bad apple.
                        As most of us MS sufferers we take one day at a time, each hour at a time, when the legs,feet,back,neck all hurt so bad we can’t see straight.
                        I know the diagnosis of MS is relatively new to you so you may not be aware that Opioids are not typically prescribed for MS type pain and usually does not help pain experienced due to MS. I have used Opioids for other than MS.

                        Although an Opioid was helpful for the reason it was prescribed I always found it interesting that I still dealt with the MS pain. Opioids have never, ever, helped any pain I experienced that was related to MS. This has been proven several times due to using opioids for injuries, surgeries, etc. and never having them touch the pain of MS.

                        From the Multiple Sclerosis Association of America:
                        With MS, opioids are not as effective, and they are typically avoided.
                        https://mymsaa.org/ms-information/symptoms/pain/

                        MS type pain is treat differently. The link I provided above explains how MS pain is treated.
                        Diagnosed 1984
                        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                        Comment


                          #13
                          Thx Snoopy

                          I thank you for the article, I read every word. Please don't think I was reaching to defend opioids, I don't think covering any pain is wise. That's why the spa and massages to help alleviate the pain. It does help, I'm happy even if its just a temporary fix. I'm happy to "not feel" every chance I can.
                          As I've said before I may be new to DX, but have lived this way for many years. I found CBD &
                          recently HEMP. Both are topical and do help a bit, I don't like to injest anything.
                          Just started Ocervus and hope that will ease some of the ache/pain load at some point in the future.
                          Once again thank you for feed back it's always appreciated.


                          Originally posted by SNOOPY View Post
                          Hi DonnaH.





                          I know the diagnosis of MS is relatively new to you so you may not be aware that Opioids are not typically prescribed for MS type pain and usually does not help pain experienced due to MS. I have used Opioids for other than MS.

                          Although an Opioid was helpful for the reason it was prescribed I always found it interesting that I still dealt with the MS pain. Opioids have never, ever, helped any pain I experienced that was related to MS. This has been proven several times due to using opioids for injuries, surgeries, etc. and never having them touch the pain of MS.

                          From the Multiple Sclerosis Association of America:
                          With MS, opioids are not as effective, and they are typically avoided.
                          https://mymsaa.org/ms-information/symptoms/pain/

                          MS type pain is treat differently. The link I provided above explains how MS pain is treated.

                          Comment


                            #14
                            Hi Donna.

                            Originally posted by DonnaH View Post
                            Please don't think I was reaching to defend opioids, I don't think covering any pain is wise.
                            I didn't think you were defending Opioids I do believe Opioids for short term is helpful for some conditions. Covering up symptoms, including pain, is what symptom management medications do, it's just how it is with this disease By the way, I see nothing wrong with your approach

                            Best wishes
                            Diagnosed 1984
                            “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                            Comment


                              #15
                              Originally posted by DonnaH View Post
                              That's why the spa and massages to help alleviate the pain. It does help, I'm happy even if its just a temporary fix. I'm happy to "not feel" every chance I can.

                              My experience has been that the pain I suffer is generally spasticity. Relentless at times. And to a minor extent the "out-of-nowhere" pain, the kind no opiate will ever reach.

                              I found that slow daily stretching is superior to any message. Spasticity still present but held at bay or even made less spastic, without any other means. Only you really know your body and what needs to be worked, the best masseuse with a great tactile sense is secondary, expensive and can become a dependency.

                              Also I am NEVER happy "not to feel"... my MS may be progressing but to lose contact, even if it is painful contact, is far worse. Mental location of my lower right leg in time and space is basically lost to me. But by using what I have, unadulterated, I manage.

                              Apologies to the OP with regards to thoughts on opioids. I agree with Snoopy. Also, I think opioids separate us even further from our own bodies. My body may be riddled with MS, but only I can discipline my body.

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