CMT can be a pain

This post is about CMT so if you’re not interested in the disease, or you simply can’t stand one more downer today, please disregard.
I try to keep these posts up beat but sometimes things truly get me down and I’m thinking that they likely get others with CMT down as well. I’m writing this with MacSpeech Dictate so if it reads a little bit different than my usual posts, that’s why.

There aren’t many things that will bring me to tears: the imminent death of my beloved mother and dog, anything happening to my husband or much loved sister, and my overwhelming, ceaseless burning pain, will do the trick.

When I broke down sobbing in the hallway today, my husband asked me why I keep so busy and could I not knock my workload down. I told him that the reason why I work so much is because when I’m working there are things in my mind besides the pain. When I’m not working the pain seems to fill every corner of my mind. Is it any wonder that I fill my days with volunteer work and projects that I love, writing my newspaper column, advocating on behalf of my peers and, in general, being a nuisance to anyone who ignores people with disabilities.

I remember when I read an article that told me pain can be stressful. It was a revelation. I mean there it was, in words, finally. Stressful! Pain is like another full-time job. It is always with you, you are always working on it, you are always dealing with it, your mind is always cognizant that have it, and it simply won’t go away no matter what you do.

I have tried more than 30 different drugs and therapies including marijuana. Some have done nothing and others all have such terrible side-effects that I simply cannot continue to take them. I say none have worked… none but Cymbalta… and it left me with constipation, very little urine output, sweating profusely and soaking wet all-time. In Canada, in the winter, if I’m soaking wet all the time, that means I would be freezing all the time because I’m cold all the time anyway.

Cymbalta cut my pain in half but I simply couldn’t live with the side-effects any more and I truly thought they were dangerous to my body. When your kidneys and bowels aren’t working, you don’t get rid of toxins and, pain or no pain, you’ll get sicker in the long run. I had a wonderful two months on Cymbalta but simply had to stop it.

I wrote about a pain conference I went to early in the summer and how, at that meeting, met two doctors who are studying neuropathic pain. I asked one of them if anything like Cymbalta, but without the side-effects, would be coming on the market soon and he said there could be something in about 18 months. That was about three months ago. I’ll get back to him back to ask if anything has happened in the meantime or is there any other drug.

I also asked the doctor who runs the CMT clinic at McMaster University in Hamilton, ON for a copy of my MRI, which is four years old. It shows that I have a cyst on my spine where my CMT pain starts and that cyst is putting pressure on the nerves. Why he didn’t tell me about this before I have no idea but I am assuming it’s because they can’t do anything about the cyst. I’m going to see if I can go to another neurologists, and see if a new MRI will give us anything more to go on and if anything can be done about the cyst and, in their opinion, will it help the pain. It’s worth a try.

Forgive me for venting but pain is one of the most insidious things I have to deal with in my daily existence and I’m pretty sure it is for most other people as well. I have never been abused or don’t know what that’s like. I have never been raped. I have no idea what you live with when you’ve been raped. I’ve never been a refugee or gone hungry so I can’t experience what bringing to the fore what these things do to a person but I do know what constant pain can do.

There is a book called Full Catastrophe Living, and I can’t remember the author right now, but if you Google the title on eBay or on Chapters you’ll find it. It is one of the very best books I’ve ever read on coping with unrelenting neuropathic pain. The author writes about your pain and treating it in an holistic way because as we all know pain not only affects your body but your mind, your everyday living, your love life, your relationships with friends and family, your social life, work, and how you eat and sleep. In general, it simply affects everything you do.

In the book, the author says when the pain gets too bad just ask yourself, “Can I put up with this as it is now for one more minute, one more hour, one more day?” I have asked myself over and over again today and yesterday. Obviously, I CAN, because there was a yesterday.

Each day, when I wake up, I tried to do the very best I can with what I have left considering that CMT has taken away my ability to walk and my hands are almost gone, I pile out of bed an optimist. I do try to do the very best I can but pain makes life a living hell sometimes.

I just asked my husband what difference it would make if I were dead. He just looked at me. And then I said, “Really, what difference would it make?” The only thing I could think of was that my pain would be gone. When I’m spouting that kind of logic, and it sounds reasonable to me, I know I need help. The difference it would make would be that I would no longer be in pain but, then again, I would no longer be. I would rather be and be in pain than not be so the search continues. Come along with me if you are in pain, as well. Reply to this blog and we’ll see what we can find as searcher in a world where neuropathic pain is something you live with, not something that can be relieved. But that doesn’t stop us from searching for that one thing that takes away our pain, does it? Hope springs eternal.

11 Responses

  1. Linda, read your blog about CMT, Pain and stress. Said you have tried Cymbalta and stopped. I have been on it for about a year and it is the only antidepressant that has elevated my mood to a more positive one……however, Topamax was prescribed for my pain over neurontin…neurontin did absolutely nothing for my pain, however Topamax, a drug designed for the epilectics works by blocking the nerve signal for seizures…..Topamax works for neuropathy pain much in the same way for us, it’ blocks the nerve signal to the brain for pain… it, also one of it’s side effects as you go up on the dosage is weight loss…I went from 208 lbs to 140…..I have since stopped the topamax to see if I would still have the pain I had before starting it…..I didn’t (maybe due to the cymbalta) so I haven’t taken Topamax for about 6 months. The bad side is I’ve gained about 35 lbs…..maybe I should go back on the topamax to get my weight down again…..anyway, I guess what I’m getting at is not all things work for all the people with CMT…..we just have to keep investigating to find something that does….Topamax worked for me….look into it if you haven’t already tried it….I started at adose of one aday of 25 mgs, gradually working up to 100 mgs per day… sister takes a higher dose….lucky for me it took the pain away at a lower dose. My neuro put me on Lyrica and he said it should help with the numbness…..I thought the numbness was a by product of the nerves being destroyed but we’ll see….

  2. Hi Linda,

    I had corresponded with you some this past summer and I have followed you for years with your comments about CMT. I have it and I think it is getting worse. Won’t go into details. Good to see an article from you again. I can certainly relate. Thanks. Bettye VanderVeen

  3. HI Linda, I am so sorry to hear about your problem with pain. I am constantly amazed about all that you accomplish is spite of all the difficulties that you have. Fortunately, I can manage with the help of. tyl/codeine #4, and oxicontin, which I take 24/7. This allows me to function…. My son, who probably has early CMT at 55 is in constant pain from back, pancreatitis, some neurophathy, (forget. the spelling here!) and of course, chonic fatigue, has some narcotic Rx but not enough to do much as doctors are so timid about giving out Rx. He gets up each morning and goes to work as a psychiatrist, and comes home to rest in bed until dinner and goes back to bed soon. No real life for someone that age. The real problem is pain control!!!
    Why are those not in pain, so unable to relate, and keep such a tight rein on anything to control it. Here in NC, getting a doctor to prescribe enough medication is rare indeed. Bah humbug!!

  4. Hi Linda,
    Living with constant pain can be a “pain in the neck” some times 😉 I am lucky, because I was eased into it by past injuries, broken toes, femur, torn ligaments, bone grafts, Scoliosis, “winter toes”, fractured L2 vertebrae, etc. Now I just see it as driving a car with a lot of warning signs flashing on the dashboard and ignoring them. The problem with my approach is that you sometimes ignore a serious problem that has to be looked at.

    I have used Cannabis successfully for pain, but would not recommend it for every-one. It needs to be the right strain. The Endocannabinoid system for each person is different and the cannabinoid constituency of each plant differs. I sampled 180 different strains before I found 4 that worked for me.

    I find it’s difficult for people who never had chronic pain to understand how it affects you. Oh, and the doctors that think you cant have pain because you lost sensation in your hands and feet … I sometimes cut my toenails and it feels like cutting my toe off. You grin, grind your teeth and 30 min later the pain is gone.

    Laughter is my best medicine, He He He, It even helps the people around me cope with my pain. I do not recommend Laughter for cracked ribs. It helps for the pain, but does not help the healing of the ribs itself.

    I will not send this car to the scrap-yard just because my dashboard lights are sending me lots of irritating warning signals, I will wait till the engine stops working.
    Keep on laughing.

  5. Hello Linda- Thanks for the honest post. I deal with chronic pain from CMT with arthritis in my feet. It is insidious, creeps into every moment of the day. I feel so small for letting it ‘get’ to me sometimes, and so mighty for carrying it every day :). I don’t have answers, just sympathy and support. I hope tomorrow is a better day!
    Best wishes, Lenka

  6. Linda,

    I will be at Mayo next month. There are several family members with similar CMT1A symptoms; siblings, nieces, aunts.

    I started low-dose naltrexone in January, and it is helping alot with my Neuropathic pain. I started in the hopes it would halt the progression of what I think will end up being CMT1A, and a pain specialist in La Jolla is using it for her patients with intractible nerve pain. She also recommends phosphatydlserine along with it (I haven’t started this yet).

    Just thought if you were interested, this could help your pain as much as it has helped mine.

    • Hi Catherine,
      I live in San Diego, and would be interested in finding out which doctor you are seeing. I have not found any that seem to be well versed on CMT in general. I have always had CMT but have not really been bothered much my it until Jan Now it has come on with a venegance. I also went to the Mayo in early February and would be most interested in comparing our experience.
      Thank you

    • I take 1mg x 4/day Naltrexone for my cmt1a. Can I ask how much you take? I take also Baclofen and sorbitol.

  7. Hi Linda, I am with CMT in Canada, if you don’t mind can I have a talk with you in phone, guess it may help me. I am a mother of two boys and my life seems to getting more challenging.

  8. I take low-dose Natrexone, Baclofen and Sorbitol¨for my cmt1a
    I am waiting if this combination will help.

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