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    Has anyone experienced these types of pain?

    WARNING: MY DESCRIPTIONS OF PAIN BELOW ARE GRAPHIC AND MAY BE DISTURBING TO SOME. I DON'T KNOW IF I'M VIOLATING FORUM RULES BY POSTING THIS. IF SO, I APOLOGIZE IN ADVANCE TO THE MODERATORS.

    First, I should say that I have not been diagnosed with MS at this time. I am in the early stages of having tests done. As I try to describe for the doctors my pain symptoms I have been wondering if the types of pain that I am experiencing are in fact typical of MS.

    For those on this message board who experience pain as part of their symptoms...I would really appreciate your feedback.

    A little history first...If it does turn out that I have MS then this is probably my 3rd flare-up. My first two episodes (early 2013, early 2014) may have been intense & very painful versions of the MS hug. I am experiencing different symptoms this time around, starting in Aug 2014 and steadily worsening with no letup since then. My current symptoms are (in the order of appearance): itchiness, numbness, muscle tightness/spasms, pins & needles, burning, vertigo and pain.

    Here are the types of pain as I experience them. (The descriptions may be "over the top" - but these are the thoughts that are running through my mind when the pain comes on and won't let me sleep.)

    Many, many, many sharp pin pricks - (more painful than the pins & needles sensation which is more annoying than painful). Comes and goes.

    Stabbing Needles - this is a wierd one. Combines a sharp stabbing sensation (like a large hyperdermic needle) with a burning sensation - as if I've been injected with acid. The pain & burning occur simultaneously in the same area. Sometimes it feels like the needle has hit a bone...that sharp and deep a pain. When this pain comes on, it feels like I'm being stabbed repeatedly up and down my arms. This can last for hours and happens every day now.

    Burning - neither hot nor cold, maybe like acid. This is my all-the-time pain feeling in my arms which is pretty much my baseline pain level these days. (the other types pain of pain come and go throughout the day or at least vary in intensity)

    Bee Sting - this is a brand new one, just appeared in my feet. This is the first time I've felt pain in my feet (was itchiness, burning and pins & needles up til now). Sharp, sudden and then fades in about 5 minutes.

    Broken Bones - deep ache with jagged edges of pain. Feels like someone took a hammer to my hands. Combination of a bruised feeling plus a jagged sharp pain. This pain showed up a couple weeks ago and is almost constant in my left hand, about 25% of the time in my right hand. My wrists feel like someone drove a nail through the joint and my shoulder feels like it was dislocated recently (aches constantly).

    Knife cut - feels like someone took a knife to my forearm and sliced through the muscle and tendons. (sharpest type of pain, can last 30 minutes without a lessening in intensity)

    Taser / Electric Shock - also a sharp pain...but feels like a bolt of electricity is literally running down my arms...comes out of nowhere and lasts 15 seconds max.


    If you've read through this post, I hope my descriptions were not too disturbing. If you've had similar types of pain I'd like to know if you are willing to share your experiences.

    Thank you.

    #2
    One more question...

    I have another question not specifically related to pain. At times my skin (face and neck) becomes HYPERSENSITIVE to any touch whatsoever. I have to wear my hair back and if even one strand of hair brushes my face or neck it sets off an electrical firestorm as if the nerve endings are exposed. Sends me almost through the roof when I can't keep my hair off my face. It is not painful, but somehow it is maddening. I haven't read anything about this hypersensitivity in the literature so I was curious if anyone else has had this problem.

    The hypersensitivity in my face comes and goes throughout the day. I also have itchiness and pin pricks in my face 24x7.

    Comment


      #3
      Hi JenLee,

      Welcome, but I'm sorry your symptoms have led you here. I hope you do not get a diagnosis of MS. Your descriptions are not over the top, they explain very well the things you are feeling. It sounds terrible.

      I have also had pain, and it is from my MS. After my diagnosis, I had neurologists tell me there was no pain in MS. Instead, they told me I was depressed and put me on antidepressants. When that didn't work, I eventually found another doctor who finally did his best to address it.

      The burning, pins and needles, aching, and stabbing pain are very familiar to me. (So is the itching). With the help of Neurontin, the pins and needles are more manageable, along with of the burning. As hard as this is to believe, I've had it so long, that it doesn't really bother me as much anymore. (The itching is also helped by Neurontin.)

      The stabbing pain is another story. That's something I still deal with everyday. It's located in my back, and for me, it has a lot to do with something known as spasticity. (The muscles contract, but won't relax). With all of my pain, sometimes altering the sensation with an ice pack has helped.

      The MS hug used to be a frequent visitor to me, but I'm fortunate it hasn't been around for quite awhile. It can be very painful for many who have it.

      There are medicines that can be tried to help with some of these symptoms, and you do not need an MS diagnosis to have your PCP prescribe them for you.

      Here is a link to the National MS Society about pain. http://www.nationalmssociety.org/Sym...-Symptoms/Pain

      And, yes, hypersensitivity can happen in MS. http://mssociety.ca/en/pdf/managing-ms-pain.pdf

      I really hope you can find some relief.
      Kimba

      “When you change the way you look at things, the things you look at change.” ― Max Planck

      Comment


        #4
        Ty Kimba

        Kimba - thank you. I've tried to explain my pain to some of my family members and while they are sympathetic I also get the sense that they think I am exaggerating or being a "drama queen".

        Fortunately my PCP is not denying that I am feeling pain (that would drive me absolutely crazy!!) and believes that there appears to be nerve damage of some kind. He prescribed gabapetin (which I believe is generic for the drug you mentioned).

        This is only my second day on the pain killer so I'm only on 300 mg before bed. I slept through the night (which was wonderful!!!) but woke up with my normal level of pain. I will be slowly increasing the dosage in the hopes that it can help with the pain during my waking hours as well.

        Ty for the link re: hypersensitivity. I will check it out.

        What has been increasingly frightening is the "discovery" of new forms of pain as whatever is going on in my nervous system progresses...and how that seems to be rapidly accelerating right now.

        I had 1 month of just intense itchiness, then 1 month of pins and needles with numbness also, then 2 weeks of burning & aching in my muscles also, then 2 weeks of needle stabbing also, then 2 weeks of "broken bones" also, and then in the last 4 days I've added "bee sting", "knife cut" and "electrical shock".

        For the first couple months I only had pain in my arms...but in the last 4 days it has moved elsewhere (neck, base of my skull, back, and soles of my feet).

        I've started a diary to keep track of my symptoms, diet, physical activity, impact of new pain killer, etc. Keeping notes is necessary because I also have memory problems....so the timeline in the paragraph above is guesswork since I didn't start taking notes until 3 days ago.

        Comment


          #5
          According to the physician's assistant...

          Got the results of my blood tests back - all good there. In other words, nothing to account for my symptoms.

          According to the PA, he's already "ruled out" MS for the following reasons:

          (1) I have 20/20 vision (no optic neuritis)

          (2) I am not exhibiting any gait problems

          (3) at 44 I am too old to get MS (if I had MS I would have been diagnosed years ago)

          Not sure what I think about that. This is all so new to me and I will admit I have zero medical training. I read that optic neuritis is a common first sign but I didn't understand that to mean that it is REQUIRED for a diagnosis. Interesting.

          Well, I hope he is right and that this is just a problem in my spine (pinched nerves)...we're waiting for the x-ray results. FORTUNATELY, he did agree that if there is nothing on the x-ray then he will send me for an MRI.

          Comment


            #6
            JenLee, you so perfectly describe your "sensations". But yours are hyper escalated compared to what I experience!

            I experience ALL the same things but not to the extreme you are. My Dr added one more gabapentin which I take in the morning and another two before bed. That calmed down the itchy, prickies during the day without added fatigue.

            And you're right about optic neuritis. No one single symptom is a MS diagnosis.

            MS at 40 something is not so unusual, I know there are some on this forum that were diagnosed over 40. But MS is considered a young persons disease. Late teens to early 30's. I was diagnosed at 29 but I know I had "blips" in my teens.

            I pray that this is not MS for you. Take care and keep us updated.

            Karen
            Karen

            Comment


              #7
              Originally posted by JenLee View Post
              Got the results of my blood tests back - all good there. In other words, nothing to account for my symptoms.

              According to the PA, he's already "ruled out" MS for the following reasons:

              (1) I have 20/20 vision (no optic neuritis)

              (2) I am not exhibiting any gait problems

              (3) at 44 I am too old to get MS (if I had MS I would have been diagnosed years ago)

              Not sure what I think about that. This is all so new to me and I will admit I have zero medical training. I read that optic neuritis is a common first sign but I didn't understand that to mean that it is REQUIRED for a diagnosis. Interesting.

              Well, I hope he is right and that this is just a problem in my spine (pinched nerves)...we're waiting for the x-ray results. FORTUNATELY, he did agree that if there is nothing on the x-ray then he will send me for an MRI.
              Hi JenLee,

              Doesn't sound like the PA is very familiar with MS. Glad you could finally sleep after taking Gabapentin. It takes time to build up the dosage.

              "Most people are diagnosed between the ages of 20 and 50, although individuals as young as 2 and as old as 75 have developed it." http://www.nationalmssociety.org/Sym...is/MS-Symptoms

              And not everyone who has MS has gait problems.

              Keeping a journal from now on would be a good idea. Include the date and amount of time the symptom lasted.

              Here's a link about itching, too. http://www.nationalmssociety.org/Sym...mptoms/Itching

              There's no one test or symptom that can diagnosis you as having MS. It's more a process of ruling things out.

              I'm glad the PA will send you for a MRI if nothing shows up on your X-ray.

              Please keep us posted ,
              Kimba

              “When you change the way you look at things, the things you look at change.” ― Max Planck

              Comment


                #8
                never had optic issues at all

                Hi Jen.
                I hope you're doing well. Just thought I'd mention, I was orginially dx'd with MS in 1976 and I never had optic neuritis. Pain is an old friend unfortunately. I hope the meds work for you.

                Let us know how the MRI goes when you know.

                Comment


                  #9
                  Hi JenLee. I have all of the types of pain you describe except for the knife cuts. My pain is mostly in my feet, but climbs higher as the day turns to night.

                  I am so sorry to hear that you are experiencing this! It is by far my most unmanageable MS symptom, and none of the first-line meds have worked for me - Gabapentin, Lyrica, Cymbalta, and all the others. All they do is make me loopy but still in pain.

                  As others have said, I hope you don't have MS, but what the PA said is very uniformed. I was diagnosed at age 57, have never had vision problems, and did not start out with gait problems, although I have them now. I have had so many medical professionals tell me so many things that are just not so, and it's good that you are reaching out online for better knowledge. There's a good bit of nonsense online too, but you sound like you're smart and can filter out the good info from the bad.

                  Good luck to you. I really hope it is just a spine problem that can be fixed. But regardless, it's best to know what you're dealing with.
                  PPMS
                  Dx 07/13

                  Comment


                    #10
                    Thank you for your feedback...question about side effects of gabapatin

                    Thank you so much to everyone who responded!

                    I am trying not to self-diagnose (that the doctor's job) or panic but obviously I have been doing a bit of research as I work my way through the testing & diagnosis process. The fact that my father has MS increases the liklihood by a little (but not much if I've read the stats correctly). As one of you advised, I am sticking to reputable sites for information.

                    I am now on 3 x 300mg Gabapatin for the neuropathic pain. It is helping, however I am experiencing some side effects - namely MANIA. It turns out that Gabapatin is also prescribed for anxiety for people with Bi-Polar Disorder and some patients report that it also serves as a mood stabilizer for them.

                    I am bi-polar (lucky me) and was on anti-depressants and mood stabilizers for 10 years. For reasons I won't go into now, I stopped taking my meds back in March. Anyway, my experience with mood stabilizers is that while they address the depression they also bumped up the mania. I cycled daily - manic from 4am-10am, then leveling out to a low energy and mood state the rest of the day. I learned to live with the mania and enjoy the benefits of "hyper-productivity" in the morning hours. When I stopped the meds, the mania disappeared.

                    Now, with the Gabapatin, the mania has returned. Off-the-charts manic the first time, a little less so in the couple of days since then. Not sure how long this side effect is going to last and if anyone else who has taken Gabapatin had a similar reaction. Maybe only bi-polars are particularly sensitive to this drug.

                    The good news is that the Gabapatin is effective for the neuropathic pain and some of the itchiness as well. What a reflief not to be in constant pain 24x7! I'd say my pain level is at 30% now...and that 30% pain may be due to spasticity and not just random nerve firings.

                    I'm hoping to get my x-ray results today or tomorrow.

                    Comment


                      #11
                      I feel your pain!!!

                      Hi, I was diagnosed with PPMS in 1992 & i have dealt with everything you have described!! For years I was told that MS does not cause pain & told it was all in my head, which was difficult to cope with. Then about 15 yrs ago i found a doc that started me on Opioid treatment & Gabapentin/Neurontin. Looking back, i now see it was not the best choice to make to start on the Opiods (Oxycontin) out of desperation. Because now all these years later I have built up a tolerance for them & they no longer help the Pain & My small town doctor doesn't know how to treat me anymore!! All of it has taken a tole on my mental state & my marriage!
                      The way you described your symptoms did not seem too graphic to me because i also live with them everyday. The numbness/hug, itchiness, tingling, burning, stabbing, aching, bee stinging, pins & needles, broken bone & hypersensitivity are all a part of my daily life also!!
                      I wish you the best with your diagnosis!!

                      Comment


                        #12
                        pain

                        Jenlee I have had several of the types of pain you describe. I was put in Gabitril an antiepileptic drug similar to Gabipentin 7-10 years ago.

                        I was diagnosed with MS in my early 50's. I never had Optic Neuritis or other eye problems with my MS, like my brother had. Nor did I have any other usual MS signs. I didn't develop gait or balance issues until 6-8 years after diagnossis. We didn't expect MS with my MRI of my neck prior to possible neck surgery due to osteoarthritis. The radiologist saw lesions in my neck without contrast medium. I had a spinal tap and evoked potentionals as well as MRI with and without contrast to diagnose the MS, as well as ruling out Lupus by blood tests. MS doesn't affect everyone the same way.

                        Comment


                          #13
                          Hi, I would be very surprised if anyone diagnosed with ms hasn't at some point been made to feel by one or more medical professionals that 'it is all in their head'. We often sound a bit like hypochondriacs because most of the initial symptoms are erratic, unusual and peculiar and down right weird.

                          I no longer apologise for trying to 'self diagnose' and educate myself and be a bit stubborn with my doc as to what I believe is best for me. I find behaving adamantly is much better received than seeming panicked and worried and knowing as much as you can helps achieve this.
                          I had an two of my fathers siblings pass away in 1970 from the most aggressive form of MS. And despite this i have been told also that 'it is not hereditary'.
                          What you are experiencing sounds like a relapse. You should have an MRI of head and spine to check for lesions. If your current doc isn't alleviating your concerns get a second opinion please.

                          Comment


                            #14
                            Any suggestions what this may be?

                            I have pain, burning pain in my left hip area. It's mostly when I lay down. That is the side I sleep on. This has been going on for 2 years now. I was doing pt and coming along nicely then I woke up one day and my left leg didn't want to work. I've asked my neuro and he told me to ask my pcp. So I asked her and she told me to ask my neuro. It's just been back and forth with no answer. It's been very frustrating. When I lay down its like I'm laying on a ball of fire. If I could get this figured out I feel I would improve in leaps and bounds. I guess what I'm asking is has anyone else dealt with this or know what it might be? I've tried sleeping on my right side but it doesn't help much. Any suggestions would be greatly appreciated

                            Comment

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