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    ALLODYNIA

    I'm having another flair of Allodynia pain as a result of Transverse Myelitis. I take Hydrocodone for knee and hip joint pain and lumbar DDD. The current dose of hydrocodone is low dose and insufficient to cover the allodynia pain. I have used one additional dose daily during this flair but have been running out before I'm due for a refill. I'm also treatment resistant for most other off label pain meds due to intolerance or allergy. In the current opioid hysteria treating pain otherwise resistant to treatment appears to be a losing battle at this point.

    Allodynia has periods of active sx, and mine seems to be triggered in cool weather, but can also be triggered by touch from my bed linens, menthol from tooth paste falling on my hands and a Lydocaine Patch applied to treat lumbar ddd pain can cause the skin on my body to erupt in burning pain. I recently consulted a pain management doc recommended by my pcp to better manage all of my pain issues.

    First off the doc was parcular?, making odd facial expressions, squinting eyes. Concerning, yes, not what I needed. Things went down hill from there. Doc challenged me about lydocaine pain patches triggering allodynia on my skin, asking why didn't Novocain in my mouth trigger it? said I'm your below average idiot, I don't know other than allodynia is related to skin, versus the mouth. It wasn't until I got home that it occurred to me that I brush my teeth 3 times a day which doesn't cause a pain trigger, but tooth paste falling on my hands does. duh.

    We went through past drug intolerance and allergic reactions. Keep in mind I'm really trying my best to over look the extremely odd behavior, am I being pranked or could it be a sign of mental health issue?

    After some deliberation I decided to fill the rx and had a breathing problem similar to other meds.

    I searched a blog associated with doc PM practice. Found a youtube under doc's name about one of the most awful family tragedies ever involving the suicidal death of doc's 2 young adult children due to bipolar disease. Awful and tragic as that is it did offer a possible explanations for the doc's odd behavior.

    Here I am in pain and unable to sleep, feeling pretty bad about myself for being under suspicion again. Could use some encouraging words and would also like to hear from other with similar history either TM, Allodynia, a weird doc story even.

    Take Care

    #2
    I have dealt with Allodynia a few times related to exacerbations and milder incidents that only lasted a day.

    Allodynia due to exacerbation caused severe pain from anything touching me; getting dressed/undressed, using the bathroom(removal of pants/underwear), water from a shower, a gentle hug/touch, bedding, socks/shoes. I was affected from shoulders down.

    I got very little sleep during this time and my husband didn't either (he was afraid of touching me in his sleep). Any of those things mentioned above brought me to tears due to the pain. This is something very difficult to explain or for others to understand unless they themselves have experienced it.

    I never asked nor were pain/opioid medications of any kind offered to me. I doubt pain/opioid medications would have done anything for this type of pain as pain medications have never touched anything related to MS --- for me.

    Allodynia resolved for me once the exacerbation resolved, this was the case with and without steroids.

    I hope your Allodynia resolves quickly.
    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

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      #3
      Hay there Snoop, it feels like sand paper has rubbed against my skin every where. The palms of my hands actually become visibility inflamed. Not sleeping because of the pain is insult to injury.

      Thankfully opioids are effective for controlling the pain.

      I don't believe mime is exacerbation related. But I really don't know the protocol for this either way.

      My PCP doc ordered the 6 day oral steroids that did nothing for the pain but at least I my resperation wasn't impaired cuz breathing is good, and didn't experience an allergic reaction.

      For me it's the combination of constant pain everywhere and lack of sleep that eventually breaks me.

      Thanks so much for responding. I didn't expect to get a response.

      Btw I read at wiki that Howard Hughes had allodynia from a spinal cord injury in a plane crash.

      Comment


        #4
        Hi MSW1963:

        Are you allergic or have you had bad reactions to the anti-seizure medications?

        You may have already been through this, but the ideal path is to first try to treat the underlying cause of the pain rather than treating the pain while not treating the cause. Allodynia is a nerve malfunction, so the protocol for first-line treatment is to use one of the anti-seizure drugs like gabapentin or carbamazepine or pregabalin to calm to malfunctioning nerves that are causing the pain. The protocol includes other classes of drugs (including some of the antidepressants) that are also effective in treating nerve pain and allodynia. Topical drugs can also be used. Have you tried meds from the various categories?

        Of course if you aren't able to take any of those neuropathic pain treatment meds, treating the pain directly may be your only option. And if opioids are the only drugs that work for you, then so be it. I hope this episode passes soon.

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          #5
          Jreagan, many years before my ms dx I was dx with epilepsy based on eegs. Many attempts at finding suitible treatment but I was 'treatment resistant' allergic reactions with facial swelling, eyes closed, purple hives the size of something big and ugly that were also unresponsive to treatment. Yes I hit the jackpot, a very special snowflake here.

          Eventually had a remission, untill MS sx full time and a dx 4 yrs later. I think what I describe as med related respritatory problems may actually be asthma and bronchitis type sx with the most recently Rx med, not unlike allergic reaction? I just don't know anymore.

          My Dr crazy eyes, as she is now affectionately known. 😢

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            #6
            Unfortunately, I know too well what ALLODYNIA feels like. I don't think that my post will help you, but at least maybe will make you feel better that you're not the only one with this problem.
            I have had this horrible burning sensation and spasms under my left breast, starting from January 2016. When I went to a neurologist, she thought it was costochondritis, just like my PCP. The neurologist prescribed clonazepam.
            Before that I only took a similar medication once, called carbamazepine, back in 2006 which led to an awful MS attack. Afterwards, up to April 2016, I did not take anything, which was when I was prescribed the clonazepam. When I took clonazepam a couple of times in April 2016, I got a horrible attack of transverse myelitis. At the hospital it was determined that the transverse myelitis impacted four vertebrae.
            They thought that I had NMO, since it's very rare for MS. Yet, my blood tests and spinal fluid test for NMO were negative, so they concluded it was MS. Also, since I had MS for around thirty years, so I was also pretty sure it was due to MS and not NMO.

            So I continue to live with this awful burning pain and spasms since then, and I'm not taking any medications to relieve this pain. This is because I'm scared that any time I've been taking these sort of medications, they have led to MS attacks. I also don't take any MS medications because I'm on Medicare, and even if I wanted to take these medications (which I don't) they would cost me around six or seven thousand per year which I can't afford.
            So the only thing I try to do is to distract myself from this pain by reading or watching TV or surfing the internet, to avoid going crazy from the pain. That's how I live day by day. The most important thing in this situation is to do everything possible to avoid stress, and find something that you find pleasurable and that distracts you from the pain. I hope you have a family that supports you, since in our situation that's a very big deal. Best of luck to you.

            Comment


              #7
              There's been a few anticonvulsant meds, Neurontin, Lamictal, valporic acid type med, depacote.
              A few antidepressant meds, celebrex, tripthaline something or other, a few I can't recall.

              I'm also curious if once the allergy sensetivity is stimulated if the genie is out of the bottle so to speak?
              Excuse the spelling. Amazed that I remember half of this.

              Amalia, yes we belong to that club that no one wants to be a member of. I am alone for the time being, things in flux at the moment. Children, what more can I say, lol. Glad to hear that you manage your pain somehow, although I realize it can not be easy, nor is it a journey for the faint of heart. I admire how you have seemed to manage with few meds. I don't take many at all myself, too many is the worse thing for a person.

              Good to hear from you and take care.

              Comment


                #8
                Some googling turned up a few results for multiple medication allergies and sensitivities that range from asthma, hives and gastro sx. Multiple Med Sensitivity/Allergy Syndrome may be related to the Immune System and is more common in women. All sound plausible, reasonable even.

                I could tolerate the allodynia flares if mine were short in duration, but that's not the case for me. My flares last months. This one began in February. I have brief periods when pain levels are lower than others.

                Comment


                  #9
                  So sorry you are experiencing this pain. I never knew it had a name. I have only had it twice during relapses, alleviated by IV steroids.

                  My heart goes out to you. I remember trying to explain to my husband how his touch, meant to be comforting, was making me cry.

                  I hope you get some relief soon.
                  Kathy
                  DX 01/06, currently on Tysabri

                  Comment


                    #10
                    Hi Penn, sorry to hear you now know the name for your pain but mostly that you have any reason to in the first place, iykwim. I'm a pretty tough cookie, and I could bear up to the pain better or the lack of sleep, but the combination since February is getting to be more than even I can bare.

                    I forgot to mention a bizarre episode during my visit with dr. crazy eyes. While checking knee reflexes my legs and arms went flailing kind of wildly. Dr. whipped around and forcefully told me to STOP IT! I apologized while kind of shrugging my shoulders in a 'what can I do' gesture. Keep in mind this doc is a general neuro specializing in pain mgt. that my pcp doc thought would be ideal for me when making the referral. ha. ha.

                    I'm not sure if TM is the only explanation for Allodynia, but curious if you have a dx of tm? That's one I've had and described to doc's for decades, with episodic arm paralysis over the years and didn't know the name of until about a year ago, confirmed it with my MS doc. infuriating to say the least. I'm not a child or so fragile that I can't handle that info. infuriating.

                    Comment


                      #11
                      No TM

                      I don't have a diagnosis of TM, just the MS. Hope you were able to get some sleep.
                      Kathy
                      DX 01/06, currently on Tysabri

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                        #12
                        Hi Penn, this flair is winding down at last. My new Easter eyelet blouse now only raises my awareness when 'contacting' my skin over time, versus last week when the eyelet's and anything contacting my skin worked up to actual pain. Relieved, relief and with that comes much needed sleep. TY for asking.

                        What I've recently concluded looking back over a period of 20yrs and a variety of treatments is that I'm allergic to a class/? of antidepressants and anticonvulsants. Anyone with similar allergic reactions may want to search google for reputable sites to consult for more info.

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                          #13
                          Glad to hear getting better. Funny, I just started up 5 days ago, first, just when tired, now, constant. Thankfully, not as strong a pain, but it is burning. No other signs for relapse, so will monitor and see where it goes.
                          Kathy
                          DX 01/06, currently on Tysabri

                          Comment


                            #14
                            UGH going your way Penn. Hope your flair is a short one. I'll be thinking about you.

                            FYI my observations that may or may not help you identify triggers, my 2 flairs of A have both occurred during colder, winter months, when I nearly live in my big, soft, fluffy-like-a- cloud-bath robe. Contact with my bath robe on my skin adds to the cold weather pain trigger. This bath robe is the closest thing to knowing the feeling of a cloud might be just to give you some insight how soft and non irritating it is.

                            This is the second robe of the same fabric that I've purchased because early winter 2015-2016 when my first flair of A started, I thought the bathrobe seams were rubbing under my arms and along the sides of my torso, and with repeated washing and drying explained the seams becoming an irritant, plus it's a year old time for a new one.

                            Well the new bathrobe made no differenced whatsoever. Within a week I couldn't lie down on my bed linens. Spent sleepless nights sitting with my elbows out by my sides and palms of my hands facing up to avoid painful contact.

                            My ms neuro in 2015-2016 refilled my rx pain meds with no problem once I had an allergic reaction to Lyrica that he rx, because he's familiar with my history of allergic reactions to other meds we've tried.

                            Now that I've relocated back to my home state after 12yrs, new neuro, plus much stricter rx'ing regs, and how long the A flares last, well it's become a nightmare. Nighttime temps tend to vary during the early spring, but by mid-day the a/c needs to be cranked up full speed, which seems to make regulating body temps and pain avoidance more challenging than usual.

                            Sorry for the long post and best wishes headed your way that your flare of A resolves sooner rather than later.

                            Comment


                              #15
                              New Physical Med & Rehab Doc

                              I had my initial consult with the Physical Med & Rehab doc earlier this week. I've been preparing myself for another difficult new patient introduction, explaining the long, bumpy path to an MS dx, plus recently realizing numerous allergies to common pain meds over the years, and new, difficult to treat Allodynia pain.

                              If the first appointment is any indication of how NOT under suspicion I felt, well I just can't emphasize enough what a complete and total relief it was to have a doc listen to my complicated history and to not get the eye roll treatment. Doc offered some meds of the antidepressant class and another pain patch opioid med, but I opted to continue with current medication with an additional daily dose for the time being.

                              I realized that my Allodynia pain is actually present nearly constantly but is more active during winter months when irritating triggers like a BATHROBE and BED LINNENS during cooler winger temps when my skin is always covered. Now, with 90 degree mid-day temps I still get chilled overnight with A/C and lower overnight temps, I find I occasionally wear my winter bathrobe even during scorching summer time. So I've drilled down on this sx and realize the Allodynia trigger is not actually cold winter temps but the introduction of fabric constantly against my skin during winter months.

                              Saturday I took aspirin throughout the day, every 4-6hrs and by bedtime I developed wheezing in my chest, and chock-breathing? throughout the night. Lovely. I didn't realize how infrequently I take aspirin beyond a single dose for a typical self limiting headache type pain.

                              I've developed hip and knee pain that doc believes is secondary to MS fatigue accompanied by limited physical activity over the years. Doc ordered x-ray studies that I had done today, so I guess I'll get the results soon.

                              The Physical Med/Rehab doc got my MRI reports that were done the end of July that I hadn't seen yet or followed-up yet with MS Neuro. According to the report I have one 4mm lesion at C2 and one 8mm at C5-6. Doc repeatedly asked about neck pain and I was pretty adamant that I don't have neck pain. Until later that night at bedtime when put my head down on my pillow and realized what an idiot I am. I've been experiencing on/off nightly neck pain for some time, but thankfully no day time neck pain.

                              Love my new Physical Med doc and very relieved that the appointment went so well.

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