Pain, Pain, Go Away . . .

 

Pain, Pain, Go Away

“There’s pain with MS?” inquired the110,000th person to ask me about it.  “Well, there certainly can be,” I calmly answered.  “Not really,” said the neurologist sitting there – that obviously didn’t know me.  “I beg your pardon,” I asked, still kindly, yet sitting up a little straighter.  “Well, MS itself doesn’t cause pain.  There are other comorbidities that can go along with MS that can cause pain, but MS itself doesn’t cause pain.”  Sardonically chuckling now, I leaned in to size up this doc who suggests he knows my pain – or lack thereof.  “I have no other diseases, no other issues, no other problems, no other “comorbidities,” I said.  “How do you explain my pain?”  “Your comorbidity may be depression which is very common in MS.  That can cause physical pain – or more specifically, it can cause one to believe they are feeling physical pain.”

Oh no he d’int.  As I felt the steam coming out of my ears and my head about to blow off, I stepped back and took a deep breath.  “I am not depressed, nor am I suffering from clinical depression.  I do, however, have very real, physical pain, directly attributable to my Multiple Sclerosis.”  There, take that.  “No you don’t,” said the soon to be late-doctor, daring to challenge my interpretation of my own pain.  “There’s something else going on that you don’t understand.  There is no pain with MS.”

And so it goes.  I’ve heard this, or some general semblance of this scenario, over and over from multitudes of MS’ers.  Why is our pain questioned?  Judged?  I don’t understand it.  If I had cancer, my pain would be accepted and treated.  Thankfully, my own neurologist gets it.  He understands the pain and will work to treat it as best he can.  The biggest gift he gives me – is believing me.

So much of this goes back to MS being such a “disease of disguise”.  So many of us have no outward signs, we seem just fine.  But oh – the pain.  Or, the cog fog. Or – well, you name it, some MSer’s dealing with it.  But the general public can’t see it so it’s tough to quantify.  However, I certainly expect more of my doctor – and you should too. Now, more than ever, it’s our responsibility to cull through the stupid.  If you know you’ve got an issue, don’t let the medical community talk you out of it.  Don’t be intimidated by a medical degree.  They aren’t you.  They don’t know what you’re feeling.  If they don’t believe you or aren’t treating you with appropriate measures, move on.  You cannot afford to coddle an ego at the expense of your health.  Move on.  Find someone who will help you.

And, just for the record – I know my pain is real – and I know yours is too.  Have you been questioned about the authenticity of your pain, your symptoms, your disease?  If so, how did you handle it.  Please share your experiences in the comment section below.  Your experience could make the difference for someone in our community.

 

 

 

Special thanks to www.FreeDigitalPhotos.net for letting FUMSnow.com use this scary picture of a woman really hurting.  Hope that was just for the picture.  

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11 Responses to “Pain, Pain, Go Away . . .”

  1. Joy Says:

    Well said. I have had pain seemingly ‘forever,’ starting with a “bad back.” Everybody knows how devastating and/or annoying THAT pain can be. I had root canal work and foot surgery and whiplash… but typically people can relate to some degree to all those things. But MS PAIN…. how in the world to describe the strange, sometimes extreme, fleeting and/or burning and or knife-like and/or zzzzzing! of MS pain to others? I finally found the solution: I DON’T! What’s the point anyway?

    My doc knows my pain is real; he even sent me to a pain specialist to cope with it. And *I* know my pain is real. Which begs the question: Why feel forced to educate those around you?
    Close friends should accept that “something hurts” or “you’re having an off day.” Go into detail as desired but if they don’t get it, well, so what?
    Others if interested can darn well GOOGLE the subject!

    MY PCP was curious when I kept returning with complaints of chest pain at the age of 50-ish. Always normal exams, BP, EKG, ETC. Next visit, the guy said, “I did some research and maybe your chest pain is what they call ‘MS HUG.’ ”
    You know I never considered it: not just that source of my pain, but that my busy GP would take the time to explore his patient’s unique but scary complaint! Sharp chest pains …. likely nerve-MS related after all. duh!!
    Am enjoying your posts. I encourage all of us to take our pain seriously without regard to others’ opinions, and to use what treatments work for YOU.
    It’s a work in progress but worth the search to reduce discomfort and increase quality of life.
    That’s my story and I’m stickin’ to it.
    Cheers! FUMS and fans.
    JJ

    Reply

  2. Alice Says:

    I am frustrated to no end with this issue. In Australia we have funded medications for neurological pain that are subsidised by the government. We pay a maximum for most prescriptions of $30. That’s all of us. Max price. But, to get things like Lyrica or Gabapentin for MS pain is not considered even by our government as necessary. Therefore we need a secondary issue to be able to afford these prescription drugs. what is our other choice? To head toward narcotics… and what is that going to do? Get us hooked and then lead to further damage in the future. There has to be another way.

    I often wonder how many suicides per year world wide are contributed to MS Pain and suffering. I know in the darkest of darkest times in my life, I have wanted to give up. I just cry in the middle of the night because of the endless pain with no relief. And, I am left on my own. Seeking treatment from a specialist leads to hospitalisation, which leads to frustration because no one agrees that there is pain. I end up in the care of a psychiatrist for depression. No I am not depressed I am in pain. Please get me out of pain and I wont want to end my misery! Its a doubled edged sword, stabbed right in your spine….

    Reply

  3. Tenae L. Smith Says:

    Fortunately, I have a good neurologist here at Johns Hopkins in Maryland. I actually just saw him last week. I asked him is it possible for MS to make my pain feel worse. He said yes, most definitely. What might be a normal bump or bruise to others, feels extremely worse to me. The muscles spasms (a new symptom/relapse to be determined)in my left arm are painful…I am having muscles spasms because of my MS. I too, do not have “comorbidities”.

    Our pain is very real!

    Reply

    • Peggy Says:

      I have had good results using Botox in my right leg to help with the severe pain brought on by spasticity.

      It does leave the muscles a bit weak at first, but I get to rebuild my strength with all the muscles able to work together.

      Reply

  4. Tricia Says:

    I’ve recently started dealing with pain in my legs… especially at night when I’d like to be sleeping! Sometimes they ache really bad and I can’t stop moving them. Other times one or both go numb and I can’t even walk to the bathroom. There are medications I’ve looked in to, but I’m not interested in the side effects. Stretching before bed seems to help a bit, but I think a lot of my frustration is due to the “fear factor” – what if they stay numb? Pain is one of those invisible symptoms, people can’t see it so they don’t get it. I’m blind in my left eye and have a neurostimulator implant for my bladder retention. All invisible.
    Thanks for your post! Check out my blog at: http://www.lovemymslife.com
    Stay strong! Oh, and FUMS!
    Tricia

    Reply

  5. Julia Forys Gulash Says:

    My neuro says the same thing, no pain in ms, guess I cry because I like to. I do get oxycontin for my back pain & baclofin for leg spasms, problem is, I been taking it for years, doesn’t work anymore. If I ask for more than he thinks I’m a drug adict. Just can’t win, so yeah then I do get depressed. Can’t anyone listen to us? Even my husband is deaf unless I’m complaining & he hears all too well, so I keep it inside. I do enjoy this sit, FUMS!

    Reply

    • Joy Says:

      Julia:
      None of my blanking business, but YOU my dear need a new neuro! A doctor should respect your complaints and address them accordingly. Any options for a 2nd opinion? Not to mention if you relieve your pain, your depression will lessen. Do yourself a favor and find another neuro to talk to. HANG IN THERE.
      JJ

      Reply

    • Peggy Says:

      Have you tried Botox injections for spasticity? Did wonders for helping pain in my leg from spasticity!

      Reply

  6. wndy jager Says:

    My neurologist when I told him about my pain. “said, Yes but I want to know about your MS symptoms. He’s a qualified neurologist!!!!!!!!!! Im just a sufferer.

    Reply

  7. Traaz Says:

    Hallelujah! Well said!! I have this repeatedly from my Drs & it is so extremely frustrating! Still in the process of finding a Dr who doesn’t have that opinion.

    Reply

  8. Margaret Says:

    what pain? ive been asking care providers for years why my muscles ache all the time. Ive been ignoring this label of mine (MS) for twenty years. and it worked!! but today, not so much. I really dont’ want to take medicine especially by injection. having no local resources in my area (that I have found yet) I feel stuck. thanks for this site.

    Reply

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