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    newbie--desperate--unbearable back pain and custody trial

    Hi everyone,

    I am sorry for the duplicate posts. I wanted to introduce myself in the introduction thread but I also felt like this would be appropriate for the General Questions and Answers thread. I am a newbie and in desperate need of help.

    I am in the middle of a custody battle for my seven year old daughter—the trial is May 5th. My soon-to-be ex-husband is claiming that I am unable to care for our daughter because of my MS.

    I have relapsing remitting MS and am on Copaxone. My husband initiated our divorce when I had my first severe relapse in October 2013—I ended up using a wheelchair and was partially blind.

    I’ve regained my ability to walk, my vision, etc., since then, and my MRI shows no disease progression.

    Unfortunately, at the end of this January, I began to have severe lower back pain. It feels like spasticity. My neurologist has continuously raised my Baclofen and that helped through roughly the end of this March—it enabled me to stand up straight and be mobile and take care of my daughter, though I still hurt.

    But at the end of this March I reached the maximum of Baclofen 80 mg per day, and it stopped working on my back pain. I have had an MRI to look for a slipped disc or arthritis and it has come up empty.

    It’s been 21 days and the pain has gotten worse to a point where I can’t stand up straight—I’m always hunched forward. I whimper in pain when I wake up.

    The only thing that’s getting me through the days is a tens unit my Physical Therapist ordered for me—I keep it on constantly and blasting.

    I have tried other muscle relaxers through my PCP and nothing makes anything but the smallest dent in the pain.

    When I feel my back from mid-back to lower back there are specific muscles that are so tight that I feel the urge to take a needle and burst them, if that makes sense.

    I have an appointment at a pain clinic on Thursday, April 23. I was just able to speak to them and they said it would only be a consultation, and that they couldn’t say if they could do any injections or if they could they would have room to fit me in before my custody trial.

    I need to be able to stand upright for my custody trial and I am horrified that this is happening. I’ve never experienced anything like this before. I’ve had spasticity in my left hip, tops of my ankles, and a muscle in my left calf intermittently but it’s never been debilitating.

    Have any of you ever experienced spasticity in your back to this degree? If so, what did you do to help with the pain? Do you know if there is any way I can get something to make the pain tolerable and allow me to stand upright for my custody trial? My daughter’s life is hanging in the balance.

    I’m scared. I know that I’m new and you don’t know me, but if you have any advice or feedback it would be so much help. I don’t know where else to turn.

    Thank you!

    Maggie

    #2
    Hi Maggie,

    Welcome to MSWorld, but I'm so sorry to learn of everything you are going thru and your pain. The stress you are under can't be helping your spasticity, either. (When life is less stressful, you may find it goes down to a more manageable level.) Your soon to be ex is a sorry excuse for a man to initiate a divorce while his wife is going through a severe relapse, not to mention her first one! There are plenty of people who have MS and still care for and raise their children. Do you have family or close friends who would be there to help if you were to need them? If so, that might make a difference to the judge.

    There are other oral medications that you can take in addition to the bacloflen, which may offer you some relief. I'm just not sure you'd be able to reach/ tolerate an effective enough dose by May 5. But, still something that may be worth asking your neurologist about. (Or if you're unable to do that, your PCP might be able to help, but they aren't as familiar with treating spasticity with these drugs.). You can find medications for spasticity listed here: http://www.nationalmssociety.org/Sym...oms/Spasticity Phenol injections are listed as another possibility, but I have no idea exactly what that entails. I don't think that would be a quick fix, since you'd have to find a doctor qualified to do it.

    Other than that, the pain management doctor may be your best hope in such a short period of time. Maybe they will be able offer you a treatment before the 5th?

    Other possible solutions, but unfortunately, none would be quick enough fixes:

    Consulting with a Physical Medicine and Rehabilitation doctor (another word for them is physiatrist), who would be most qualified to assess your spasticity and recommend the best treatment. There's something called a baclofen pump, which may help address your spasticity. Unfortunately, it takes a while and does involve surgery.

    Here are some links about this therapy:
    http://www.medtronic.com/patients/se...icity/therapy/
    http://www.medtronic.com/patients/se...test/index.htm
    http://www.baclofenpump.com/consider...ctor/index.htm

    Botox injections. Again, you'd first need a consultation with a neurologist or physiatrist who was trained to do them (not all of them are), but they are really most effective when used in smaller areas.

    http://my.clevelandclinic.org/servic...sis-with-botox
    http://www.botoxuls.com/talk-to-your...d-a-specialist. (Botox is also used for other conditions, so you'd need to find out if the doctor was right for you.)

    Implantable spinal cord stimulators. https://professional.medtronic.com/p...rces/index.htm

    I'm sorry I couldn't be more help in offering quick solutions for your pain and spasticiy.The only other thing I can think of for now is cold therapy. I don't know how a custody hearing works, but maybe it's possible a final decision regarding the custody of your daughter could be delayed? Maybe, knowing you have treatment options for your spasticity would help your lawyer make a case for you?

    Try to take care of yourself during this difficult time. The stress you are under isn't a good thing for MS. Best of luck and please let us know what happens.
    Last edited by Kimba22; 04-22-2015, 01:36 PM.
    Kimba

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

    Comment


      #3
      I'm sorry I haven't got a solution for your back but just thought I'd pass this on. In 2007 1 of my step-sons left his abusive mother and moved in with my husband, my 3 kids and myself. On jan 1, 2009 the other 2 did the same. My MS was pretty bad then. I was "the blind woman", "the hobbler", etc.

      Their mother tried to use MS as a reason to NOT give my husband custody. Big mistake!!! She was reprimanded by the judge, showed her true colours and my husband was given full custody. It only took 9 months.

      Good luck and please keep us posted.
      Jen

      **Edited by Moderator in compliance with MSWorld Guideline #4.**
      Last edited by Kimba22; 04-22-2015, 11:22 AM. Reason: disguised profanity
      RRMS 2005, Copaxone since 2007
      "I hope to be the person my dog thinks I am."

      Comment


        #4
        thank you for your responses and follow-up

        Hi all,

        Thank you for your responses and good wishes. They were heartwarming.

        I thought I would move my reply to this thread to the general questions and answers board so that I am not still introducing myself. I did fill out my profile so you can learn more about me, if you would like to.

        A few people responded to my post on the Introductions board and I wanted to follow up with Temagami, gwynnf, and Keisha here (if you are listening!)

        Tegamami, Thank you for the suggestion! Does the magnesium butter get sticky and smell or wear off? I know this might seem like a petty question but I am imagining getting up in the morning with my daughter and getting dressed (with the pain I'm in, I'm in no shape to take a shower until my meds start to kick in) and I don't want to smell weird (on top of my obviously hunched posture)!

        gwynnf, you said that you got trigger point injections at a pain clinic? Can you explain what that means, if you have time? I am worried because my back spasticity moves (sometimes it's like I have a bullet lodged in my midback on my left side right next to my spine, and it's sharp pain. Sometimes it's like I have a diagonally pulled muscle that throbs continuously on the right side of my back at the bottom--above my tailbone. And the worst days are when my whole back from the middle to the bottom feels like one tight concrete screaming aching slab--I can't even tell if there's any particular place it's coming from. That's most days).

        Keisha, you said you had similar pain and could not get help. I am so sorry and I am right there with you. When I had my bad relapse in October 2013 and the back pain started, my neurologist was 2 hours away, and he said that the back pain could not possibly be due to MS, and that it was psychiatric! My ex-husband refused to drive me to get medical care anymore (we were still married then), which is why I had to move back to my home state and live close to my parents. We are a stone's throw from a very prestigious award winning neuroscience center, and I was so happy, but my neurologist there does not take my pain seriously at all either. The last time I went I stood up and SHOWED him the slab and explained it was unbearable and I asked, "is this spasticity?" and he shrugged and said, "hard to tell."

        I am just back from my custody trial and waiting to hear the judgement. I went to my pain clinic appointment (my PCP does take the pain seriously and referred me there), but when I got there they said they didn't deal with MS pain and they prescribed me Tramadol.

        It helps. It gives me about 2-3 hours of the day where the pain is mild and I can stand up straight and not be hooked up to the tens.

        At the trial I was on the stand for four hours, and the pain was there but it was like I couldn't feel it. I think my adrenaline must have been in overdrive--I kept thinking, this is to save my beautiful girl--and I am lucky for that.

        But of course once I traveled back to what is now my home state (the trial was in the rural state where I lived with my now ex-husband) my back pain kicked back in and is now even worse.

        Jen, I wanted to thank you for telling me your story--I am so glad that in your case the judge did not discriminate against you for your MS and saw what was best for the children! I am hoping so much the same happens for me.

        And Kimba, my goodness, you apologized because you said you couldn't give me better information on anything that would fix my problem faster, but you gave me such good advice.

        I followed your links and I ended up thinking maybe a Baclofen pump would be best, given the severity of my spasticity and that it takes up my whole back. But I am scared of surgery and scared of side effects, of course--and scared that if it takes me away from my daughter--the surgery and recovery time--it could influence the judge's decision. Unfortunately, though, the pain is so debilitating that IT takes me away from my daughter--oh, I used to be so active. I walked a mile or two miles every day or every other day. And I could take my daughter swimming and tromp around with her. Now grocery shopping and short walks and housecleaning are a major challenge.

        I want to thank you all again for your responses--and I have three questions.

        1. Has anyone had a Baclofen pump put in? If you have, what was your experience?

        2. Has anyone tried Neurontin or Lyrica for this kind of pain? A couple people I know have recommended them for me. I know they aren't spasticity drugs but from what I understand they're supposed to block the nerve impulses that cause pain?

        3. Do you think maybe the pain is psychiatric? Not in the way my jerky neurologist described, but that the stress of all this is making it much worse? I have to wait for my second current jerky neurologist to get back to me and give me some kind of referral, so maybe in the meantime I can try to calm down--though it is so hard when I am starting a brand new life and grieving all these losses and so scared about losing my daughter.

        OK, that's it. Thank you for being there and taking time to read and help. Just writing this has made me feel less helpless and alone.

        Maggie

        Comment


          #5
          Hi Maggie:

          I wasn't one who posted under your thread before, but I do have some thoughts about your most recent questions.

          Originally posted by Maggie2015 View Post
          1. Has anyone had a Baclofen pump put in? If you have, what was your experience?
          Yes, there are some members here who have a baclofen pump. Folks who have a pump might not see your question in this thread, but you can read their experiences in past threads. If you use the search box at the top of the page and search for "baclofen pump" you can find them.

          Originally posted by Maggie2015 View Post
          2. Has anyone tried Neurontin or Lyrica for this kind of pain? A couple people I know have recommended them for me. I know they aren't spasticity drugs but from what I understand they're supposed to block the nerve impulses that cause pain?
          "Drugs that block nerve impulses that cause pain" is a better description of an anesthetic or a pain reliever, and that's not quite how Neurontin and Lyrica work. And that's why they're not the best drugs for spasticity pain.

          Pain from spasticity is muscle pain from the cramping. Neurontin and Lyrica work on nerve pain -- that is, pain originating in the nerves because of damage to the nerves. They don't block the pain impulses per se, but instead act to calm down the overexcitability of the damaged nerves that's causing the pain. Different target tissue, different mechanism of action. If the pain isn't coming from damaged nerves, calming them down won't have that much effect on pain. That's not to say they won't work for spasticity pain -- and they could be worth trying -- but there may be other drugs that work better.

          The opiate pain relievers come with their own baggage, but sometimes they're the ones that do the job most effectively. As you've probably found, sometimes you have to run the gamut of all kinds of pain relievers to find the one that works. Even Cymbalta, the antidepressant, has been approved by the FDA for general pain relief.

          And good grief, I can't even imagine a pain clinic that can't/won't treat MS pain. If the best they can do is Tramadol, then your primary care doctor and/or neurologist can probably do just as well by prescribing for you him/herself, if they're willing. But more about the pain clinic in a minute.

          Originally posted by Maggie2015 View Post
          3. Do you think maybe the pain is psychiatric? Not in the way my jerky neurologist described, but that the stress of all this is making it much worse?
          Yes, and here's a clue:

          Originally posted by Maggie2015 View Post
          At the trial I was on the stand for four hours, and the pain was there but it was like I couldn't feel it. <snip> But of course once I traveled back to what is now my home state (the trial was in the rural state where I lived with my now ex-husband) my back pain kicked back in and is now even worse.
          If the only difference in your level of pain is where you are and what you are and aren't thinking about, then that's highly suspicious for a psychological component to the pain.

          Actually, chronic pain has a psychological component. Anything that draws attention to itself gets bigger and bigger with the amount of attention paid, and it's the same way with pain. One of the treatment aspects of a pain clinic is -- or is supposed to be at least -- teaching people how to calm down and direct attention away from their pain so that, in the inattention, the perception of it gets smaller and smaller. Those techniques include cognitive behavioral therapy, meditation, guided imagery, yoga and the like.

          I'm almost afraid to ask , but does your "we don't treat that kind of pain" pain clinic have those kinds of psychological programs you could take part in? If not, can your GP or neurologist refer you for psychological therapy where you can learn some calming and coping techniques?

          Comment


            #6
            trigger warning--domestic abuse mentioned below

            Hi jreagan70,

            TRIGGER WARNING: DOMESTIC ABUSE MENTIONED BELOW, THOUGH NOT SPECIFICS.

            Oh, thank you for your thorough reply. I will look at the Baclofen pump threads. It is also good to hear how Lyrica works.

            And please don't hesitate to ask about psychotherapy!!! I never would have survived the grief and loss I've experienced this past year--my ex-husband abandoning me during my relapse, having to resign my job and move across the country for healthcare and family support, the divorce and ongoing custody battle for my daughter--if I hadn't been seeing a psychologist.

            I started seeing her in September of 2014 and I have seen her up to 3 times a week and our sessions are sometimes 2 hours or more. This is because she has also served as my legal advocate--there was a domestic abuse component to my relationship with my ex-husband. She diagnosed me with PTSD and has been helping me talk about what happened to me and most recently helped me practice testifying to the abuse in court during my custody trial, which of course I had to do in front of ex-husband. So that has been huge.

            But she and I haven't necessarily talked about calming techniques for the pain--it's been more about me coming to terms--if that's possible--with losing the life I built and worked so hard for not so much because of MS but because my ex-husband was who he was, and my MS relapse made me relatively helpless in the face of his abusive tactics and made it more difficult to escape with my daughter.

            I hope that makes sense.

            Now that the custody trial is over I will ask her (my psychologist) if we can work on helping me develop some tactics to cope with my MS pain. This a good idea--I've been so obsessed with the trial that I hadn't thought of it.

            I am on Cymbalta for depression--60 mg--I might talk to my dr. about increasing the dose, too?

            I hope I haven't scared anyone by including this part of my history here. If so, I apologize.

            Maggie

            Comment


              #7
              Hope, rebuilding, living again...

              Hi Maggie,

              I read your post and thought about my own journey through divorce and ms. I hope and pray that this message finds you doing better and having full custody of your child

              It is sad to hear how many women who have had to deal with such a hard life lesson.

              Over the years I have been working on (since we have shared custody it is never ending...) mindfulness techniques, yoga, and lots of deep breathing.

              I even find at times if I start to have issues walking if I stop and do deep breathing that it helps me relax enough to continue without issues. mindfulness is all about meditation and being mindful of what you are doing. It can start with eating, just being present and mindful of what you are eating, focusing only of eating. I am not very good at explaining this in enough detail for you to do this, so you might want to see if you can find some mindfulness training locally or on-line, it can help you with relaxing during stressful times.

              Yoga is very good for stretching out tight muscles. I am currently listening to some deep shamanic meditation music I found on you tube that is mellowing me out right now

              I am going to be hanging up a punching bag in my house to help with those stressful days of when I have to deal with my X

              I was also contemplating art therapy - although having a hard time finding one locally, so I was thinking of just taking some art classes.

              Remember that you need to take care of yourself, so that you can take care of your child - just like they say on the airplane - you need to put your air mask on before helping others.

              Take time now that you are out of that relationship and away from your X, to get to know yourself better. Figure out what it is that you like and follow your heart. Maybe if you think of this as an opportunity to change and grow rather than leaving behind.

              I too had to leave our house, most of my things and move to my home town (granted not far enough away from X) to be close to family and support. I have worked on releasing the feelings for those objects and I look at it more of a cleansing and a new start, in fact I got rid of some of the items I had brought with me and said they had bad Ju-Ju.

              I have been able to build a new life for me and my children which turned out I believe much better than where we were. Although when I first left I did not see it that way, but now I do.

              Oh - I also wanted to mention that for a long time I thought I had MS back pain - only to find out recently that it is gallbladder (which runs in my family) and not MS to my surprise. Although it does not sound like the same as your pain (mine is in the upper/middle back) - I only mention it to see if you have ruled out other possibilities?

              Wishing you happiness, harmony, and lots of health!
              Lilac

              Comment


                #8
                Hi Maggie!
                I hope this finds you well. Sorry for the delay in responding to you. I've had a few demons of my own going on lately.

                Trigger point injections that I am receiving are for spasms in my back causing the pain. The are a mixture of numbing medicine and a steroid of sorts (I don't have the name). When I see pain Dr she pokes around my back in the area of the pain I am having and locates spots that are tender and marks those spots. She will then inject the medication into that "knot".

                It doesn't really hurt when she does this. I can usually feel the spot "jump" when she injects the medication. This doesn't hurt and tells us both she got the "spot". I have been going 6-8 weeks apart since November and the number of injections has decreased from 7 to only 3 on the last visit. I am so happy that I have done this. I still have the pain in my back but it is nothing in comparison to what it was. Between this and my TENs unit I'm an very happy with the results.

                I have tried the meds you were asking about Baclofen, Lyrica, Neurontin, etc.....they all made me feel very lethargic to zombieish. I do take nortriptyline at night which does seem to help.
                I hope your decision comes back in your favor from the judge! I was in an emotionally abusive marriage until 4 years ago. It was the best thing for me but a bumpy road.

                I am in a very happy and positive relationship now.
                Take care!

                ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

                Comment


                  #9
                  taking care of me and trigger point injections!

                  Hi, it's Maggie.

                  gwynnf, how glad I am that you left your emotionally abusive marriage and that you are in a better place.

                  And Lilac, thank you for sharing your experiences about your divorce. I know just what you mean about letting go--I settled the property out of court and gave my ex everything in the hopes that it would help me get custody of my daughter.

                  I just had to sign a Quickdeed to give him my stake in the house we bought (it was on the list of things to do when I could stand up! ) and I was stunned by how I felt after I put it in the mail--I kept remembering the sound the front doorknob would make when it turned, and a stain on the carpet I could never get out.

                  I am actually in a positive relationship now with a very dear and good man, though we have only been together six months. My ex-husband and I separated in December 2013, and the divorce was dragged out far too long because of custody. But my psychologist wants me to be very careful not to get attached too quickly and to keep my eyes open for "red flags." So far, none. I do often feel it's magical that I have found him.

                  He is able to deal with my chronic pain. In fact, he has rubbed my back so much that he actually knows where the "bad spots" are. One night we were on the phone (he lives about an hour and a half away and can only come visit for 2 or 3 days at a time) and he asked me how my pain was.

                  I said it was good except that I felt like I had a bullet burning right next to my spine at my mid-back on the left side.

                  And he said, "I can feel the knot under my thumb."

                  gwynnf, this makes me wonder if I might be a good candidate for trigger point injections. I am not going to a pain clinic but to a Physical Medicine and Rehabilitation Specialist on June 4. But maybe he can actually LOOK AT AND FEEL MY BACK and assess it for those kinds of knots. God, that would be amazing!

                  Fingers crossed, and gywnnf, I am glad to hear that you've found a combination of things that have helped with your pain. And Lilac, your list of things to do to heal emotionally is inspiring. My psychologist did say that now that the trial is over I need to focus on myself and healing. I am trying, but wow, I have a lot of work to do!

                  Maggie

                  Comment


                    #10
                    1 more thing--gallbladder!

                    Lilac, I forgot to say in my last post that I am so glad you mentioned the possibility of gallbladder issues.

                    My pain starts at my midback, but it is both sides, and it goes all the way down to the muscles next to my tailbone, both sides. Most of the time it just feels like one slab of agonizing pain, but when someone rubs my back and the muscles loosen up I can start to tell what the "bad muscles" are. Sometimes if I just get one muscle rubbed on one side my whole back loosens.

                    But gallbladder problems run in my family, too--my mother had to have hers taken out.

                    It is something to look into! Thank you!

                    Maggie

                    Comment


                      #11
                      Stabbing back pain too..

                      Omg! I think that I had what you are talking about just the other day. It felt like someone was stabbing me in the back and then a ripple outward of muscle spasms, it took my breath away. Is that the type of back pain you have?

                      I went to my primary who gave me some muscle relaxing medicine - which took care of the tightness in my back, but it also took away the numbness, so that I felt the pain. Ouch! I prefer the numbness

                      That same night I went to a Reiki share - and felt so much better it was amazing. Today I am feeling the tightness and a little of the pain again, so tonight I will try some Reiki on myself to see if it helps it feel better.

                      Maggie - I am so glad you have found someone to love, although I agree with your psychologist on being careful. So, to add to the list of things to help the pain - Reiki
                      Lilac

                      Comment


                        #12
                        yes, it's like stabbing a lot

                        Hi Lilac,

                        Yes, sometimes it feels like someone has stabbed me or is stabbing me in the back.

                        Whenever I've thought that I've wanted to laugh/cry because of what my ex-husband did.

                        Right now it feels like someone is stabbing me in a muscle on my left side of my lower back, right next to my spine and above my tailbone.

                        The rest of my back feels like one concrete slab of aching pain.

                        I'm hanging on, waiting for that June 4 appointment. I did manage to take a shower yesterday, and I did laundry!

                        Maggie

                        Comment

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