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  • kaizahs

    You are so luck to have a partner who helps you and understands that you need that help. My boyfriend is great for the most part but when I mention that I'm having leg pains, back pains or tingling/numbing in my hands, I don't think he quite gets it....When I say I'm hurting, he'll compare it to his hard day at work and how he's sore as well.....ugh...anyway....I just don't know how to explain that its chronic pain and that mine doesnt really go away.

  • jandj

    I'm new to this site, but wow, how it resonates with me. Responding to old posts, not sure how that works.  I have many well-meaning friends that say they are there to help, but just don't get it.  I have found friend can't do the one thing I need - just listen.  I don't get how my brain works one minute, and I can barely tell you what I did an hour ago.  I can't explain how my arm burns like an inferno and no I can't go to dinner as planned.  I want to!  

    But you look so good!  Well, looks can be deceiving! And no, you have no one to talk to.  You start to isolate yourself.  If you were swimming at the pool yesterday, why can't you join this today?  Well that was yesterday!  And each day can be different.  Or months of normalcy.  Sort of.  But I was swimming to releave the constant burning in my hips.  And it's the only excercise I can do.  I'm not just chilling in the sun.  But thank you God, I am living the best I can in the sunshine...today...because I may spend the next 5 days in bed.     

    But my father has hip pain, and his medicine helps, and I just gotta stretch it out a bit.  Oh, I do that...right along with my nerves.

  • tnigro70
    It is truly hard to make others understand how ms makes us feel especially when they cannot see what we are feeling on the inside most of the time my mom does not like to talk about what bothers me physically and my dad just says there should be some kind of cure and then goes back to reading his paper it's very off-putting and it's really hard to talk about with others.
  • lucas1828
    Like a lot of people, I completely understand the feelings when family and friends are "doing me a favor" to appear they are listening for longer than 2 minutes. What's super frustrating is when my Case Manager at the local Sphyciatrist office won't let me get a word in edgewise! I'm paying her and she won't shut up talking about her Eye problems, what Dr. do I see, go her problem's of why she is what she is!
  • jenp0323
    As I sit reading all of the testimonies, I am tearing up because it is amazing to hear that others deal with the same symptoms I have been struggling with for the last few years. I am recently diagnosed, and so far doing well with Rebif after having horrible experiences with Copaxone and Tecfidera. I am currently going through a flare, today is day 18. My biggest problems are the dizziness, eye movement/focus issues, huge problems with too much stimulation, weakness in my legs, tremors and am just starting to experience some nerve pain in my face. :( I completed a five day high dose steroid regimen last week and feel like my symptoms are worsening. Long term steroid treatment is pretty tough on my body as I also have Type I Diabetes and steroids cause the blood sugars to go crazy. Luckily I'm a nurse and know quite a bit about how to manage myself and so feel like I do as well as I can. What I'm really struggling with are the mental side effects of all of this. There are days when I couldn't drive because the dizziness with ocular movement is too bad. I am working part time as a nurse but have had to leave twice due to the overwhelming dizziness and panic that sets in once I feel the stress from the business of everything around me. It amplifies every other symptom and I leave in tears, embarassed and super concerned about my future and ability to continue working. I work in a small, private practice and so there is no short term disability or really any possibilities for me when I'm flaring. The other auto immune issues I have cause me to be more susceptible to illness which triggers symptoms. I have found working increasingly more difficult over the last year especially and this flare has me worried. I don't think they understand. :( Any advice on what I should do? Or just words of encouragement would be appreciated. I'm feeling a little discouraged this morning.
  • 12trikaj
    I have a mom, a nurse no less, who just doesn''t "get" that cognitive impairment is real.  Whether its not being able to focus and cook with noise and other people around or difficulty in dealing with too much stimuli.  It's a "mental block" or being silly.  After having her falsetto-mimic my request for being left to work in the kitchen alone back at me, I am seriously reconsidering my visits over there.  I have been there after she has surgery and helped out till she was fit again.  She has many good qualities, but this one thing grates on me.  Anyone else have problems like this?  How do you cope? 
    No One will GET IT, except those of us who have it.  I recently had to go to the ER again on April 25th because I could not get my pain under control and my neurologist told me to go there to get the pain under control.  Again, yeah again, I was told by 2 different ER doctors that MS doesn't cause pain, I said "all you need to do is read the research on MS" and one of them said "I'm not going to argue with you.
  • littleturtle

    So, when your ammune system attacks the myelin sheath and the neurotransmitters are exposed and your body forms lessons,  this so called doctor said there is no pain.  I may have had more than a few words for that dumb ass.  

    That would mean lessons and nerves being exposed  inside your body do not sense any pain and that you become numb.   Maybe eventually you would lose sensations but in the process of all this I cannot believe you would not have any pain.   That Doctor was very ignorant to the disease and to others feelings.  

    A class A jerk...

    Little turtle hopes this finds you feeling better.

  • DRC
    12trikaj wrote:
    I have a mom, a nurse no less, who just doesn''t "get" that cognitive impairment is real.  Whether its not being able to focus and cook with noise and other people around or difficulty in dealing with too much stimuli.  It's a "mental block" or being silly.  After having her falsetto-mimic my request for being left to work in the kitchen alone back at me, I am seriously reconsidering my visits over there.  I have been there after she has surgery and helped out till she was fit again.  She has many good qualities, but this one thing grates on me.  Anyone else have problems like this?  How do you cope? 
    No One will GET IT, except those of us who have it.  I recently had to go to the ER again on April 25th because I could not get my pain under control and my neurologist told me to go there to get the pain under control.  Again, yeah again, I was told by 2 different ER doctors that MS doesn't cause pain, I said "all you need to do is read the research on MS" and one of them said "I'm not going to argue with you.


    I have to (reluctantly) admit that I used to have the same kind of attitude with patients with chronic pain issues. I am an ER nurse at a very busy level 1 trauma center. In that job, you have to quickly determine life or death conditions, prioritize and handle those first,then move on to the less emergent complaints. As bad as it is from the patient's perspective, chronic pain falls further down the list. We actually have signs posted that we don't treat chronic pain. What further complicates matters is the VERY large numbers of people who come to the ER to attempt to obtain narcotics for recreational purposes (which has the tendency to make us somewhat jaded). These things can narrow our focus as Healthcare providers. Before I began experiencing the symptoms of MS, I was guilty of not having as much compassion for patients who had nothing wrong that I could see or verify clinically. Once I knew what it was like to have something "invisible" (no physical findings, no abnormal labwork, normal x-rays) , I had to completely change my thinking. However, if the doctor isn't educated on these types of conditions, they won't order the medications to relieve the pain. Furthermore, they aren't usually educated on chronic conditions since the focus of the ER is acute, life-threatening conditions. What should really happen in order to solve this issue is for the neurologist to give the patient written admission orders. Then, the patient can be admitted and receive proper treatment for their problems (pain,etc). This would mean the patient would bypass the ER, therefore not having to be at the mercy of acute care practioners for a chronic condition. Additionally, ER personnel need more education on chronic conditions, such as MS, because more often than not, the neurologist won't write admission orders. (They are rarely willing to be the admitting doctor due to more strict guidelines set by insurance companies). It is a complicated and sad setup which leaves the patients out in the cold and suffering. Its nearly impossible to understand the misery of what we live with unless you experience it first hand. Living it myself has radically changed my outlook and helped me to have more compassion for patients like you; like me. Apologies for typing a book. Darren, RN
  • DRC
    12trikaj wrote:
    I have a mom, a nurse no less, who just doesn''t "get" that cognitive impairment is real.  Whether its not being able to focus and cook with noise and other people around or difficulty in dealing with too much stimuli.  It's a "mental block" or being silly.  After having her falsetto-mimic my request for being left to work in the kitchen alone back at me, I am seriously reconsidering my visits over there.  I have been there after she has surgery and helped out till she was fit again.  She has many good qualities, but this one thing grates on me.  Anyone else have problems like this?  How do you cope? 
    No One will GET IT, except those of us who have it.  I recently had to go to the ER again on April 25th because I could not get my pain under control and my neurologist told me to go there to get the pain under control.  Again, yeah again, I was told by 2 different ER doctors that MS doesn't cause pain, I said "all you need to do is read the research on MS" and one of them said "I'm not going to argue with you.


    I have to (reluctantly) admit that I used to have the same kind of attitude with patients with chronic pain issues. I am an ER nurse at a very busy level 1 trauma center. In that job, you have to quickly determine life or death conditions, prioritize and handle those first,then move on to the less emergent complaints. As bad as it is from the patient's perspective, chronic pain falls further down the list. We actually have signs posted that we don't treat chronic pain. What further complicates matters is the VERY large numbers of people who come to the ER to attempt to obtain narcotics for recreational purposes (which has the tendency to make us somewhat jaded). These things can narrow our focus as Healthcare providers. Before I began experiencing the symptoms of MS, I was guilty of not having as much compassion for patients who had nothing wrong that I could see or verify clinically. Once I knew what it was like to have something "invisible" (no physical findings, no abnormal labwork, normal x-rays) , I had to completely change my thinking. However, if the doctor isn't educated on these types of conditions, they won't order the medications to relieve the pain. Furthermore, they aren't usually educated on chronic conditions since the focus of the ER is acute, life-threatening conditions. What should really happen in order to solve this issue is for the neurologist to give the patient written admission orders. Then, the patient can be admitted and receive proper treatment for their problems (pain,etc). This would mean the patient would bypass the ER, therefore not having to be at the mercy of acute care practioners for a chronic condition. Additionally, ER personnel need more education on chronic conditions, such as MS, because more often than not, the neurologist won't write admission orders. (They are rarely willing to be the admitting doctor due to more strict guidelines set by insurance companies). It is a complicated and sad setup which leaves the patients out in the cold and suffering. Its nearly impossible to understand the misery of what we live with unless you experience it first hand. Living it myself has radically changed my outlook and helped me to have more compassion for patients like you; like me. Apologies for typing a book. Darren, RN
  • Shadow

    I am a Registered Nurse with MS. I had been going to my primary doctor for 10 plus years telling him there was something wrong with me but he never did an MRI. He kept telling me that I was working too hard, raising children and taking care of my propery and home. I had many problems with coping with too many distractions but I did it. My husband causes all the distractions now since my kids are adults and do no live at home. I have learned how to block him out and it drives him crazy. He will tell me he will stop talking since I am not listening to him anyway. I am home all the time and unable to function as a nurse any more. So I do get alone time to focus so I can listen more instead of having him walk away.

  • Bkboo
    I also feel that the nurse and people just dont get it. How could they?  I am having difficulties with thinking, focus, memory, etc. Its frustrating to no end but I remind myself they dont have MS and cant understand. I have to take care of me and ignore the oh come on and do this ,dont u do that,  etc...
  • TrishSue
     OMGOSH! Yes I do have people like that in my life also....especially my 3 "GROWN" kids! (Son 28, 2 daughters ages 19 and 26 ) Who still refuse to realize that Mom...HELLO!!! Has Multiple Sclerosis and she cant do the things that she once was able to do...OMG!!!
    Not to mention...there are those who make fun of me and my forgetfulness and anxiety!! PaaaaaaLEASE HUNNY give me a BrrrrEAK!!!
    I DARE other people to walk just "ONE DAY" in our shoes!!!
    All I can say is this..."Pray for them!" They ALL need prayer!!
    Hang in there and know that there is someone going thru very simular situations as yourself....(((((BIG BEAR HUGS)))))
    God Bless you!!!
    Fell free to add me to your connections!
    Trish Sue
  • kellykane

    I have had to force my three children to read the spoons theory so that they can understand what I have to del with. It worked. They are 26,24,21.


     

  • Lissajohnson

    Omgs,  I so can relate.  Mostly with forgetting things.  Before I found out that I had MS I would forget things all the time, and didn't understand how I could do it so much.  But the  thing that stands out the most about my memory is my ex boyfriend who bring things up that was a problem for us in the beginning of our relationship and I couldn't remember what it was that happened back then (7 yr relationship). Mind you he is a person who remembers everything nd word from work.  If I didn't say it the same way I didn't 6 yrs ago than I was lying.   I honestly couldn't remember some stuff and dang sure couldn't tell u word from work what I said back than.  Still have problems remembering stuff, I type it all down in my phone now to help me remember.  I work in a preschool and I forget the kids name all the time.  Best thing with the little ones you can get away with it by making it a game lol

  • TrishSue
    And also...........coping with people who say they unerstand you have an illness...yet they continually mock you...dont try to help you clean when your backs hurting...they just soak you up like a sponge for whatever they can get from you or whatever you can do so they dont hafta ...because you have MS and they see you as helpless..................WOW!!!!!!!!  : (
  • Renae_Clare
    ouch.  That's got to hurt but I know what you're going through. The cognitive issues are horrible to deal with because you can't put a finger on them and you can't put a Band-Aid on it and you can't even tell people about it because your cognitive issues won't even let you explain. My mind does not work right either and the words don't come out right and sometimes I just plain stutter or and am speechless because I can't think of anything to say. In my head I am smart as a whip but to the outside world not that much. I have had MS for 40 years now and so I pretty much learned to live with it in spite of all the dreadful symptoms.my mom, who had MS she was in her late teens and is saying," what is is". She had a way of just giving it up to a higher power and thastill find solacein just that one little saying. Take care.Renae Clare
    http://www.thepottymouthbook.com
  • tasha71822

    I just reciently got the final diagnosis of MS but have been struggleing sith it for about 5 years now. People do not think that there is anything wrong when they can not see anything and so they generally don't want to hear about it. For me I have very bad nausia vertigo and dizzines. Some cognitave imparements especially around a lot of people and noise. But is was not untill I was diagnosed and my mom started to do a lot of reading that she started to understand what was going on for these last years.

    Thankefully she helps me now as I really need her. She has also apologized to me for how nasty she was at times over the last few years. Give her time and explain things clearly to her wether she wants to hear it or not. For an older parent it can be really hard to accept that their child is sick and will never get better from what they have so the easiest thing that they can do is to just ignot it ans change the subject to something different.

    Today is good just rember that even when you are at your worst. The day is still good and tomorrow will be better. 

  • debbiems
    I have had MS for 32 years and my mother handled it well.  She denied it for years, didn't like to talk about it, and really didn't understand it that much until last year.  It wasn't my imagination since many others would make comments to me like "where's your mother?"  or "what's with your mother?"  It hurt and was frustrating, but in time I got over it.  In the beginning, I had professional therapy for six months that helped me out a lot.  I limited my visits and phone calls with her.  Then I relied on others--peers, other family members and friends--who gave me the understanding and support I needed.  She never changed (a person has to want to change) but I changed in how I handled it.  I love my mother, and have learned to accept her the way she is. It takes time. 
  • debbiems
    I wrote an article and posted it this week to my weekly blog.  It is about Invisible Symptoms & Fatigue http://bit.ly/OLiTAp how disabling they are to multiple sclerosis. A link to a video I uploaded to uTube and my website is included in the article.  I did the video in a moment of frustration and it shows the true colors of me during a down moment! 
  • Avatar
    Boy is this a hot topic.  I have visible symptoms but I also have invisible symptoms.  I was talking about my invisible symptom at a MS support group of all places and the co-chair apparently didn't believe that my symptom was real because she doesn't have it.  So other MSers do not want to believe invisible symptoms just like everyone else.

    She told me to stop taking my medication and the symptom would go away.   She doesn't have my symptom so she assumed that my symptom was not real.  I realize that some people can be insensitive but she has no business being a chair of a MS support group if she cannot give support. 

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