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    • #11228

      “There is no guidebook to living with a chronic, progressive, and incurable disease. Even if such a book existed, it would only be somewhat applicable, as things change on a daily basis. We are all as unique as this disease, yet have one commonality: pain.” Jennifer Powell

      Read what else our columnist has to say about painkillers and how they help her get through the day here: Pain Meds Help Me Live

      How do you manage pain day to day?


    • #11304
      Nancy Bergstrom

      I use duloxetine or Cymbalta for pain.  I have neuropathic pain in my legs, and Cymbalta and previous Lyrica have been the two medications that have help quell the pain.  I had tried Vicodin, which did not help and I hate the side effects.

      I had used a 60 mg dose of Cymbalta for a couple of years, but when I switch healthcare due to the ACA, I took some time to get my meds set up with the new pharm program so I cut back to 30 mg dose and day and have stayed on that for the most part.  Sometimes when I have overdone things, or know that I will do a great deal of walking, I take 60 mg split into two doses about 12 hours apart.

    • #11305
      Debi Wilson

      Hi Nancy!

      I am glad you have found some meds that work for you! My leg pain comes as cramping and burning in my feet. Is that what your neuropathic nerve pain feels like? I use homeopathic  leg cramp pills  that  contain magnesium. They help for a little while. How long do you find relief with your medicines?

    • #11317

      I also take Cymbalta for neuropathic pain.  I used to take the highest dose of Gabapentin, as well.  I did this for 5+ years.  A few year s ago, I decided I wanted to try to see how I did without the meds.  It took several months to taper off of them and it was horrible.  I experienced lots of dizziness, headaches, fatigue, etc., and my anxiety level was through the roof.  I had to go back on Cymbalta.  There’s been a lot of news recently on the withdrawal from antidepressants.

    • #11378
      Kristin Johnson

      I take one Tizanidine at night for muscle relaxation and as a sleep aid.

    • #11379
      Debi Wilson

      Hi Cassie and Kristin,

      Are the meds you mentioned working well for you?

    • #11382
      Sammy Ebeling

      Yes I do take pain meds.  But first, Debi Wilson, I take magnesium glycinate, 3x a day, EVERY day.  This has made a remarkable/positive help in lowering the cramping/twisting/burning/stabbing pain of muscles (Dystonia) in my left lower leg and both hands. Just wanted you to know my neuro recommended magnesium GLYCINATE, she says your body absorbs the magnesium faster/better. just an FYI?

      I use oxycodone  for muscle cramps and muscle pain. It does NOTHING for nerve pain. I  have started on/worked up to 900 mg Gabapentin (generic) Neurotin  for nerve pain.  Neurotin used to be the to-go drug for epilepsy & seizures many years and drugs ago.  I can’t believe the positive difference it has made for my nerve pain!  The Pain Clinic I go to said “we could try this” (?) and my tearful (ugly crying face) reply I said “why not’?  Sure am glad I did try it.

      Cassie: I inadvertently went off/ran out of antidepressants a few years ago…and I thought my life was absolutely falling apart within 6 hours of my regular dosage not taken.   Could hardly tell/talk to the nurse on the phone.  GAH!

      I’m open to any new ideas anyone has…..I’d rather be taking oxycodone but?  It’s the only thing that helps with muscle/MS pain.

    • #11383
      Debi Wilson

      Great information Sammy, Thank-you!  I appreciate you told  me the specific type of magnesium, I know there are many.

      • This reply was modified 3 years, 5 months ago by Debi Wilson.
      • This reply was modified 3 years, 5 months ago by Debi Wilson.
    • #11387


    • #11390
      Jane E Harmon

      Like others have reported, I, too, am on both prescription and OTC medications for several types of pain.

      Joint Pain
      The treatment of MS with steroids has left me with devastating side effects; possibly the worst among them is avascular necrosis (AVN), also known as osteonecrosis (ON). Steroids have the unique ability to cause what amounts to a stroke in bones, especially where they form a joint with one or more bones, when fat globules cut off the blood supply to the bone. I first lost both hips, and later my knees, with fractures in all four joints. The really devastating part of this disease is that once one joint is affected you are at risk of losing others for the rest of your life. If surgical procedures early on are not effective, the standard treatment is joint replacement.

      There are several opioids I cannot take; finally, we settled on Fentanyl patches and either hydromorphone or hydrocodone. They allowed me to be out in the community a good deal of the time until my body adapted. When the pain got worse despite increased dosages I slowly decreased the dosages, then stayed off of all narcotics for a year. And essentially stayed in bed all during those nearly 3 years.

      Chronic Regional Pain Syndrome, Type 1 (CRPS)
      As my hip joints remodeled, the left leg rotated out to the point that my ankle rested on the bed all of the time except when lying on my right side. That bony prominence, the left lateral malleolus, became very painful. I tried many ways to keep it from touching the bedding, finally settling on a sleeve designed for hockey players to pad both malleoli with a silicon pad. In the meantime, both Achilles’ tendons began to burn where they were in contact with the bed, the soles of both feet began to burn, and finally, I hope, both feet and ankles burn in the pattern of anklet socks. (I am concerned that CRPS may be developing in the area where the hooks from the leisure bras I was wearing in bed pressed on the bed; it continued after I stopped wearing the offending garment.)

      This has all been helped with certain narcotics and several supplements.
      Narcotics which address both types of pain:
      1. Nucynta
      2. Methadone
      Other prescription meds:
      1. Gabapentin entacarbil (Horizant) has been a game-changer for me. Normally, gabapentin is only absorbed in a short area from the end of the stomach to the beginning of the gut. One form, Gralise, works better by keeping the drug in that area longer. Horizant works so well because the gabapentin molecule is bonded to a molecule the body recognizes as food, so it becomes available for absorption for the entire length of the gut (small intestine)!
      2. Nortriptyline, an antidepressant.
      Supplements which can help, especially neuropathic pain; all have been ordered by my pain specialists:
      Magnesium, 250 mg. twice a day. It also helps relieve the pain in my hips resulting from spastic muscles pulling on the dead and fractured bones. Ask your doc which forms might work best for you, or try different oral forms. I’m currently using magnesium orotate with very good results.
      turmeric/curcumin complex
      fresh broccoli sprouts, which we grow

      Currently, methadone is helping me be up and around in the community more, although bumps, whether on the road or wherever I might go in my chair, are still mighty painful. And the CRPS is not as well-controlled as it was on Nucynta, so I will be asking if we might try combining the two.

      I hope some will find this helpful.

    • #11402

      No there is nothing for PPMS apart from the now newly licenced drug but I very much doubt it would be offered to me as usual there will be a criteria that has to be met…To be honest I am happy being drug free as I truly believe long-term drugs to be damaging, and may cause other illnesses that we then have to deal with…of course if there was a ” miracle ” drug that was guaranteed to take all manner of MS away, guess I would be first in the queue but even then I would have to weigh my options up if there was any remoteness that this drug may cause another serious – life threatening future…My choice to not pill pop is purely my choice, and that goes for most med’s that my local GP has tried to prescribe to me, such as for depression…Oh yes, pop a pill and all your troubles will go away, how I wish…



      • This reply was modified 3 years, 5 months ago by Jacqueline.
      • This reply was modified 3 years, 5 months ago by Jacqueline.
    • #11408
      Laura McCartney

      I have to use pain meds to get through the day although it is not necessarily from my MS. I also have 7 bad discs in my back is why I started the meds although my pain is not only in my back anymore. I think part of the pain is MS because I have neuropathy in my feet and legs. Gabapentin helps the neuropathy and I use morphine and hydrocodone for the other pain. If I couldn’t get the pain meds I would have a terrible life, probably unable to get out of bed. Even with the pain meds my pain is still a 5 out of 10 but I can function at a 5 level. I broke my ankle in May of last year. My pain at that time was a 10 out of 10 and I almost passed out from it so I knew how bad pain can be.

    • #11417

      At the same time of my PPMS diagnoses, I was also told I had Meralgia Paresthetica ( top of right leg, inside groin area ) of which I suffer daily… Although past MS professionals have since agreed it is part and parcel of my MS but still no one has offered me anything…

      Oh yes, the burning and painful toes, and the mild pins and needles of the right hand are also my daily woes…again, nothing has ever been prescribed for either…


      • This reply was modified 3 years, 5 months ago by Jacqueline.
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