Can’t Make This Up

So I’m gonna have another “vent” post… and I hope I’m not alone with what I’m about to discuss.

Have you ever had someone tell you, “I think you’re exaggerating” or “I think you’re making that up.” When you’re talking about how you’re currently feeling due to your MS? I have … more often than I can deal with.

In all honesty… I would have to be an AMAZING actress & have a really big imagination to “make up” how I’m feeling, or how bad the pain I’m feeling is. I think that’s why I don’t “voice” how I’m truly feeling all the time when someone asks. I mean who wants to hear “It hurts REALLY bad” over and over…

Invisible pain

I hear the “making it up” comment mostly when I’m experiencing nerve pain… because for those of you who have had the “pleasure” of experiencing nerve pain… it’s not something you can see of course, but it’s also really hard to explain. I’ve used… getting burned by acid at one point… and I was being completely honest when I said that… but I still got told “you’re exaggerating” or “you’re making it up”.

I wish I was making it up

Do I wish I was “making it up” … yeah… I really do. I wish I didn’t have to feel what I have to feel from the symptoms that MS has brought on me. But I think something that people don’t understand is that I really DON’T want someones pity on how I’m feeling… I just want someone to discuss it with at times, or just to get it off my chest, so to say. More or less… I’m looking for support in my fight, not at all pity. I can’t even explain how much I hate seeing the look of pity on someone’s face when directed at me. That’s not while I discuss how I’m feeling… it’s just nice to talk about how I’m feeling, instead of keeping it all bottled up inside.

So… the bottom line is… We can’t make this up…. there is no describing the “invisible” symptoms. I’m one of the MS patients that you can’t “tell” something is wrong with me just looking at me. You wouldn’t know that… Yes.. I have been in a wheelchair… I’ve depended on a Walker & a Cane as well… But just because I no longer need those on an every day basis, doesn’t mean that I’m “all better”.

xoxo

Ashley Ringstaff

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Comments

View Comments (72)
  • Mascha
    1 year ago

    Hi Ashley
    You nailed this article. This happened with my whole family. My husbands side and my side and have no contact. Thinking i made my MS up. So hurtful being accused of not being sick.
    I love your explanation of this article:)
    Mascha x

  • Ashley Ringstaff moderator author
    1 year ago

    Sorry to hear that you have experienced this… but glad you found my article and enjoyed it.

    xoxo

  • Dar210
    1 year ago

    If people would even just look at old pictures, even a few years ago – if they were to look at my FACE, it looks pretty obvious to me that I’m not the Get Thru Anything With a Smile person I used to be. Even when I try, I just can’t find a smiley feeling that can produce even a ‘half-glowing’ smile. I don’t want pity either – but would love some of the understanding and compassion I had the first fifteen years of my ‘MS life’. I’m now in my 24th year. I’ve made it thru some really hard times, but it has taken a toll on me. My face shows it, my posture shows it. I unfortunately also have Dry Eye Syndrome, and haven’t been able to cry even ONE tear in well over 10 years. Try to explain that to anybody! I look and feel lost, and when I try to explain it, those that used to be close to me say “It’s not about you. Get over it.” That hurts.

  • Ashley Ringstaff moderator author
    1 year ago

    🙁

    I’m sorry that you have been dealing with this for so long. Thank you for reading my article and commenting.

    xoox

  • kimber
    2 years ago

    I hate that I really look normal- I run/walk miles a day, swim and am pretty busy- but on those days when I can’t stop spasming, where my feet are swollen sausages, when my vision is blurry- like you said I look normal but dam sure don’t feel it and yes I have heard it all too

  • Connie
    2 years ago

    Never have I ever had someone say to me “I think your exaggerating” I have had the utmost support from all my family and friends.

  • Nobu
    2 years ago

    If the doubter was the person who asked the question – then I guess I would say — “don’t ask unless you want to listen”. Otherwise if they are a bystander – I might just tell them to save their comments or MYOB.

    I hate the pathetic looks from some people and have even called people on it. Most tough when it is my mom. I tell her to lighten up – but hey, she is my mom.

  • Candy
    4 years ago

    Ashley,
    I just wanted to thank you for your voice. You’ve said all the things I’ve felt for so many years in silence. I’ve had MS for 18 years now. It’s now SPMS and so much is suffered in silence due to the fear of being labeled crazy or looking for sympathy. Of which you know we are not or nor do we want. Just a shoulder to listen.
    I hope you have that, I’ve yet in all these years to find one besides my wonderful husband.
    Thank you so much,
    Candy LaRose

  • Ashley Ringstaff moderator author
    4 years ago

    I do have my husband that listens – but I also have my friends that I have met through MSWorld that do ‘get it’ because they are living with it as well.

    I know what you mean about no ‘seeking’ out sympathy, we just needs to get things off of our chests sometimes.

    xoxo

  • Mgroz
    4 years ago

    I too am one who has MS but don’t look like I have anything wrong. My ex- husband used to ignore me on bad days, saying “you don’t look like you feel that bad” or “you’ll feel better tomorrow, you don’t have to go to the doctor now.” His ideas of my MS and nonsupport of me is a large reason he is my ex. I too use a cane, have a brace for my drop foot, have constant balance issues and cognitive struggles. But these aren’t obvious. So I understand your need to vent, I do the same thing to trusted friends.

  • Ashley Ringstaff moderator author
    4 years ago

    I’m sorry to hear that your ex wasn’t supportive to you and your MS. Just goes to show how strong you are and how weak he is.

    We all need to vent at times… or else we will have it all bottled up just building to explode.

  • Amy B Mel
    4 years ago

    Dear Ashley,
    You are the voice of MS as far as I’m concerned! Your way with articulating what we feel is perfect.

    Support not pity for sure!

    Thank you for all you do.

    Amy

  • Ashley Ringstaff moderator author
    4 years ago

    Aw thank you! That means SO much to me, you have no idea. In ways, I wish that I was the only one going through what I write about – but I know that’s not the truth. I just want to let everyone know that they aren’t alone, and that the way they think about things, or handle things, is okay. We were dealt a difficult hand – and we’re doing the best we can with it.

    xoxo
    Ashley

  • vivi
    4 years ago

    Hello Ashley.
    I am new at this. I am a disabled nurse. I became disabled in 2005 after having 2 cardiac arrest secondary to severe asthma that caused me to “Clamp” and they could not get me tubed. I was devastated that I had to leave my career that I had worked so hard to excel in. I hated not being in the ER which is where I worked. I just couldn’t believe that I could no longer work. I went through a very severe depression. Then after all of these years, I was told I had MS. I couldn’t believe it. It still hasn’t sunk in. I am 60 yrs old and never could have believed that at my age I would be told I had something worse than what I was already dealing with. I have 3 grown children that still are in denial that I have it. I blamed being on steroids for years as being the cause for all of the pain I was experiencing. I too am somewhat in a denial. At first I was told I had restless leg syndrome, then, vascular insufficiency. Then, early one morning I woke up to go to the bath room and ended up in the floor.I thought that I had a stroke at first. I had never experienced anything like it. My left leg just didn’t work. I couldn’t even stomp my foot. That is when it all began. It seemed as though that is when everything began. New symptoms began to develop all the time. Numbness in my leg and arm and severe weakness. Heck, even numbness in my face. Now, I hardly leave my home. I am afraid to go anywhere by myself for fear I will fall. I pray for all of you that are suffering from this horrific, sneaky illness. And Ashley, I no longer care what anyone thinks about my illness. I am the one who has to deal with it. Praying for you.

  • Ashley Ringstaff moderator author
    4 years ago

    Oh wow -that’s a lot to deal with for one person. I’m so sorry you are having to live with all of this.

    I’m glad that you have the perspective to now care what others think – I’m like that most of the time… but there are times that I just don’t have the patience that I ‘normally’ do and I go off on someone.

    Life is already stressful as it is, throwing MS & other things in with it just increases the stress.

    xoxo

  • Teri Stanley
    5 years ago

    Dear Ashley,
    I am so sorry you are experiencing the terrible nerve pain. I also have MS and do go through this type of pain on a daily basis. For me it is difficult to know what ‘old’ friends really want to know how I am when they ask. I think, for me, that is the determining factor of how ‘believable’ my story is to them. But, I want you to know that I do support you and I do understand what you mean when you say, your nerve pain feels like you are getting burned by acid. My nerve pain involved every nerve throughout my body, so it feels like every nerve in my body has been cut….basically it has been, or very close to it. I will say a prayer for you and hope the neurologists can help your pain. Much love!

  • Ashley Ringstaff moderator author
    4 years ago

    Well – at least I know that someone knows what I mean with the nerve pain.

    I can say that I’ve cut a lot of people out of life that were treating me with less than I deserved.

    Wishing you the best as well. It’s cooling off here in Texas – and I always do better when it’s not scorching hot.

  • ohseanyboy
    5 years ago

    Hi Ashley, I don’t have MS which may seem strange for me to post on here but I do have very bad cronic pain. I am now 53 and have been a type 1 diabetic for as long as I can remember. I have had complicians from it for many years and have been taking Duladid for 13 years, now 4mg. every 3 hours. While I know thats a huge amount of pain medicine it does nothing at all to give me any relief. My doctor does not believe me and says he can’t possibly give me any more. I have been through every treatment known to man but nothing helps. The pain in my hands and feet are as I describe them “like someone taking a wire cutter and snipping off my fingers and toes and then using a blow torch on them” I have been to dozens of specialists all up and down the East Coast and as far west as St.Louis MO. and their just is nothing they can do. I would let them cut off my hands and feet if it would stop the pain and I 100% mean that. Nuronton helps some people but did nothing at all for me even at very high doses. So I guess my question is how do I go on when my quality of life is at rock bottom and there is no way out? Please email me if you have any thoughts ok. Sean ohseanyboy@live.com

  • ToBeOrNot
    5 years ago

    I am just getting to the point that I can no longer hide the MS at work. Walking has required forethought and concentration for quite awhile now, but my gait is increasingly off. Only one comment so far from someone who figured I overdid it in the garden over the weekend.

    I manage a team of professionals and am considering telling them. Advice Please!

  • Ashley Ringstaff moderator author
    4 years ago

    Advice on telling them – that’s difficult, since I haven’t been in a situation like this.

    I’m hoping it’s all well taken and understood, and that they don’t let it define you – but rather take it as you might not be 100% all the time, and to help you over that hurdle.

  • Maribeth
    5 years ago

    I so understand this. One neurologist wouldn’t believe me when I was having the pain I was having. That is hard to swallow. I expect people who don’t understand M.S. to be uneducated but a doctor! I just keep at it until they listen and then they realize I really do know my body! I try to educate people but if anything I have learned in the past year and a half is some people are wanting to listen and learn and other people still believe I am making things up! Those people I just change the subject and don’t deal with them about my M.S. because they really don’t want to know or learn about it.

  • Ashley Ringstaff moderator author
    4 years ago

    Just a shame that common sense isn’t so common anymore.

    I too can’t believe that some doctors don’t BELIEVE what we’re doing through… it’s ridiculous. I mean – I understand they have probably come in to contact with someone in the past that was just looking for a prescription pain med, but they can’t treat everyone like that is their intention.

  • cdwilson44
    5 years ago

    I can identify with what you are saying. My neurologist calls the pain “peripheral neuropathy”. I hate to say it, but I really think that is “med speak” for “I don’t know what is doing this, but it’s real”. That admission in itself gives me a little satisfaction.

    I have run the gamut of injections and have moved into the secondary progressive group. I can’t wait to see what’s next.

  • Ashley Ringstaff moderator author
    4 years ago

    Yeah – I really feel that doctors do know what they are talking about clinically – but they have no actual idea on what it is REALLY like. So they can only understand to a certain extent.

    It might seem like some of these decisions should come easy when it comes to treatment options, etc. But it’s hard when you have gone through so much as it is and the treatment has failed.

  • LesleyAnya
    5 years ago

    I have had so many needles stuck in me that I flat out refuse to have any more injections or tests that involve needles unless they knock me unconscious first. These doctors don’t seem to realize how much those needles hurt. I’d like to see one of them put up with just half of the hundreds of needles I’ve had stuck in me. I’m done with it. Blood tests are no problem. I have so much scar tissue on my arms that I don’t even feel those, but there will be no more epidurals, nerve blocks, facet injections, trigger point injections, spinal taps, myelograms…I’m done.

  • Rendeanne
    5 years ago

    Ashley, you have hit the nail on the head. I am SO tired of “You look great” that I could puke! the nerve pain is unrelenting, the autonomic dysfunction is a pain in the neck and a major crimp in my lifestyle and nobody believes that you can be so miserable yet “look so good”

    Close friends understand, even those without MS , but acquaintances don’t believe it and think you are making it up, including some family members. It just wears thin.

    Yes, I am venting big time but the past 2 weeks have been a real battle and you expressed exactly what I have been experiencing. Thank you for being bold enough to speak out!! 🙂

  • Ashley Ringstaff moderator author
    4 years ago

    I’m glad that my article could help you in anyway. I know what you mean about having some people actually understand – then having the others just being negative or fake.

    I’m not a fake person to people – and I let everyone know that from the get go. What you see is what you get. So I expect the same in return.

  • SueZbell
    5 years ago

    How are you?

    Standard answer — with a smile:

    “I could be better but I could be a whole lot worse.”

    (then either ask the same question to the person that asked me or otherwise change the subject)

  • Ashley Ringstaff moderator author
    4 years ago

    OHHH! I like that!!!!

  • Amy B Mel
    4 years ago

    Perfect!! Just perfect!

  • Drkdreamer
    5 years ago

    Oh, yeah. It’s been 15 years since I retired on disability – and I’m still bitter about work ‘friends’ who refused to acknowledge I had difficulties.

  • Ashley Ringstaff moderator author
    4 years ago

    I feel that each of our feelings towards a certain situation is okay. We are each dealing with different hurdles and situations. There isn’t ONE certain way to make it through it though.

    I do wish that people would open their eyes a little bit more though.

  • Patricia
    5 years ago

    I truly understand how you feel. I have pain, tingling, aching and oh did I say pain? And like you I don’t “look sick”, or like I have MS. I quickly say, what does “sick” really look like? High blood pressure, diabetes, cardiac problems and let’s not forget the big disease with the little name, AIDS? So just because we get dressed, some of us don’t need help with showering or dressing does not mean we don’t hurt. I hurt all day. I try distractions but they at times make matters worse. I can’t stay in bed all day everyday because that would give in to this Mysterious Monster. As said by loggers, I have MS butt don’t have me. I have learned my condition well and takes control of my life with MS. So people with their unknown words of what they see but not know I ignore and take one day at a time. Live for you not what people think they see. Cause they really don’t see us MS’er.

  • Ashley Ringstaff moderator author
    4 years ago

    Totally agree. It just doesn’t help that I have a temper… and when I have put up with or brushed off a lot of comments, or having a really bad day/week, etc. I don’t have the time to really put up with any of it, and I just way what’s on my mind, whether I planned on doing so or not.

  • Patricia
    5 years ago

    Corrected typos: As said by blogger, “I have MS but MS don’t have me.

  • fiona3012
    5 years ago

    It sounds like you are doing a sterling job in the Oscar stakes!! That’s what I call it after 35 years +of ‘making it up’. I would not wish nerve pain on my worst enemy! Keep your chin up and vent often!

    I use Lyrica in the evening on really bad days but hate the weight I put on with it and quite frankly find a small joint is the most effective!

  • Ashley Ringstaff moderator author
    4 years ago

    See – I live in Texas, so smoking is pretty much out of the question.

    Love the whole Oscar reference!

    I do a lot better in the cooler months – like now. But come time when it heats up in Central Texas, that’s when I have my hard times.

  • Sandy
    5 years ago

    If I had a dollar for every time I have had someone say that.

  • Ashley Ringstaff moderator author
    4 years ago

    RICH! haha And lord knows we need it – considering the cost of medications these days!

  • knit10purl5
    5 years ago

    I agree with you. When I was working no one could understand how tired I was & why I kept forgetting things. Now that I have retired I have found a lot of support from the ms meetings.Have met a great group of people. We call and support each other. I think we can only depend on each other.

  • Ashley Ringstaff moderator author
    4 years ago

    That’s awesome that you have found a support system. I’m lucky that I have close family that really understand or tries their hardest to understand, to help me live the best life that I can.

    I would be completely lost had I not found my support group and friendships through MSWorld.

  • betennant
    5 years ago

    My first Neuro, who was supposed to be an expert but was not accepted by any MS assoc. after I was diagnosed with Fibromyalgia, I was sent to him, and he told me I had small axon polyneuoropathies or something like that. He told me I would never be blind or never be lame. He did many tests but said they were all ok except for the spinal. He said it was not MS. He lied. He followed me all around where the tests were done and had access to all my records that my doctors ordered, but from the first he told my doctor I had “a beautiful brain”. I was 49 and I know something that affected my vision and feelings and balance a lot longer. Something wasn’t right. I told him and my doctor that I had an unusual amount of blurred, doubled, vision and tons of floaters. Nobody did anything about my Uveitis. My doctor said see an eye doc, but he did not tell me to see a Neuro doc and the regular Eye doctor told me he didn’t see anything. I did not know until much later that all the doctors around where I was seen were all under my first Neuro. Asking for other Neuro’s dd no good after they talked to him. Confounded by my symptoms, of numbness in my feet and hands and face and other weird things, he referred to my first Neuro that told them that it was something else and not what it really was in my spine. I had an APDefect had to be tested over and over till I wanted to scream. When they referred to my first Neuro, he said I did not have anything serious. When I pushed him, he asked me if I had seen a Psychologist. So I forgot it and tried to cope. I found a doctor that would give me pain meds to keep working while MS was doing damage. I could only walk in bad pain and 2006 Feb. woke up legally blind in one eye. Not getting my sight back, on Mon. I saw a Retina Spec. After 3 visits he put drops in my eyes and finally told me my problem was my Optic Neuritis. He said I had, had it before. I knew it but was not told it could be serioius. He said I had Uveitis and whitish exudants in front of my retina which I think were Pars Planitis. He told my reg doctor to order scarey blood tests (Syphillus?)and MRI’s too, and she covered for him and would not even show me my MRI’s when another doctor ordered them. I just kept getting sent back and suffering to work. After it happened in 2006 I could not see anything clearly in my left eye. I was so sick and dizzy and had to shut that eye to even walk holding on to the bathroom feeling like I was going to lose my cookies. This was after a very long week of migraines and pain behind my eye. The retinal specialist ordered the standard tests for other diseases and MRI’s. I was sent south in my state, to the only specialist accepted by the MS assoc. I sent her my MRI’s She told me she saw it all on the phone. She told me to come down the first of the following week to see her. They called me back to redo tests which were abnormal..At some point she talked to my first Neuro and she changed her tune to angry sort of. I went back by appt. By her tone I knew something had affected her. I found she was teaching under my first Neuro. Then she said if she would treat me she would use Copaxone but she wanted me to get a second opinion. I found she was getting a job somewhere else so I made arrangements to go to the CC. They said either MS or stroke. I got a bill for 22,000.00 for 3 additional tests in one day. They were abnormal too. After appeals, my insur. finally paid most of the bill that they didn’t discount. I paid hundreds of dollars while waiting,in payments. I finally found a doctor here who said it was def MS. If I had included everything, this would be a book, but doctors told me stuff that hurt and made me feel bad, like I was a hypochondriac.. I could not tolerate Copaxone, couldn’t afford what the insurance wouldn’t pay after 4 months of IVIG, I refused Tysabri, made the doctor mad because of it. and had to stop Avonex for several other problems that required surgery. I am taking care of myself right now. I wanted to take Laquinimod but it has had a rocky road. Oh, I had an OCT test and they finally put MS in my records. It only took over 15 yrs.

  • LesleyAnya
    5 years ago

    OMG!!! How horrible that must have been for you. I know how doctors can be. I was diagnosed with MS in 2009, but was asymptomatic until about a year ago. I have tried and tried to get into a good neurologist, but I live in a rural area and neuro’s are hard to find to begin with. I finally got into one (he also runs a sleep clinic). After telling him everything I had been dealing with, tremors, vision problems, constant exhaustion, excruciating nerve pain, etc., he told me that I did not have MS, I had sleep apnea. He set me up to go to his sleep clinic. I never went and have never seen this doctor again. I found a neurologist in a town that’s about 30 min. from me, but to see him I have to have MRI’s that are less than six months old. So, I went to my family doc and asked him to order the MRI’s. He wouldn’t do it until he saw the records from my previous doctors. I signed record release forms, but I haven’t heard anything from his office. I feel like I spend all my time trying to find a doctor that will 1. Listen to me and 2. Not accuse me of “making up stuff just to get drugs”. I am sick and tired of being treated like some kind of druggie looking for a fix. My left leg is paralyzed so I walk with a limp, my low back is in so much pain that I can’t stand up long enough to make a sandwich. My husband tries to be understanding, but he is almost 20 years younger than me, so he doesn’t understand what real pain is yet. I’m 47 and my husband is all I have. My only child, Nick, was murdered in 2005 and my last husband (Nick’s dad) committed suicide in Jan. of 2011. The rest of my family is dead or doesn’t care. Most of the time when I go to bed at night, I pray that I won’t wake up.

  • Nick
    5 years ago

    I guess I am lucky, I almost never talk about my issues so I don’t have to hear “you’re making it up” or anything like it. I am often afraid my family just thinks I am lazy because I get fatigued really easily. besides the fatigue my biggest problem is that I am essentially blind in my right eye but my left eye compensates for the loss that it doesn’t afect much. I have had family tell me that they forget I am having MS issues. It is hard to do alone but my wife has her own health issues and it seems like noone else can understand or help

  • Ashley Ringstaff moderator author
    4 years ago

    I guess it’s hard for me to NOT talk about my MS. Because I’ve taken such an initiative to really be apart of the MS Community – that it’s apart of who I am. It isn’t my full definition, but it’s apart of it, in certain ways.

    I’ve learned who to talk to and who not to talk to when it comes to my MS. Especially when I’m in the need to vent. If I’m in pain, having increased symptoms, I won’t be able to handle any negative reactions well.

    Let me just say that my brain to mouth filter – isn’t there most the time lol It’s been that way my whole life though, so I think those close to me are all knowledgeable about it and prepared.

  • purplecello
    5 years ago

    Wow, this hit a nerve (no pun intended). I’ve heard “you’re not being positive enough”, “you’re not trying hard enough”, and the worst yet was “she ought to get an Oscar for that performance” when I attended a family event while experiencing severe body tremor. I was told not to address the comments as the particular family members were unable to “cope” with my illness. Really?

    Recently I was encouraged to move closer to a family member so they could be more helpful as family where I was living weren’t particularly supportive. I made certain they understood the seriousness of this commitment and they assured me it would be just fine. So I sold my house and moved a state away. Within three months my calls were being avoided because “you never have anything good to say”. I was not well when I moved and when I got all the boxes unpacked the exacerbation really kicked in. Then I was told that I better hurry up and get a job. Am I stupid? I can tell that I can’t live on SSDI alone. The same people that told me to move closer don’t want to attend MS Society awareness events to learn about the disease or how to be a care partner. They “might” drive me to the ER on occasion but I’m on my own in the room because its just too much for them to deal with. It’s too much for me to deal with as well, but I don’t get a choice.

    The bottom line is, if I have to explain it, you wouldn’t understand.

  • Ashley Ringstaff moderator author
    4 years ago

    That last statement is very true.
    I’m so sorry that you have been treated that way, especially since you asked before everything if they really understood the commitment it would take.

    Those people are just weak – and you’re strong. You can make it through this, there are ways, and we all have eachother for support.

  • Musicang
    5 years ago

    Hey Ashley,
    I know exactly what you mean. My husband expects me to do so many things because he is so sure I use my MS as an excuse! My shoulders hurt all of the time because I have yet to get a power ramp or lift to get the power chair I am suppose to use instead of crutches. My hips and lower back are always in pain. I almost can’t wait for the numbness to creep up farther so I cannot feel that area either! I have things (like working with you!) that I desperately want to do, but I am so tired after trying to get house work and “appearances” in that time for myself is nonexistent. I don’t know how much more I can take. I hate when other people make light of my MS, but when it is my own husband, it makes more than just my body hurt. I really hate this stinkin’ disease! I love you though Ashley! You can always vent to me!

  • Lisa
    5 years ago

    My husband’s father viewed sickness as a weakness. He is very hard headed when it comes to my symptoms. Thank God for this friend we met through a MS support group who is a Male. He bounces things off him and realizes I may not be exaggerating like he thinks. It still hurts that he can’t just take my word for it. Like I would make this shit up. He also walks in front of me. Its always a race in the store. People with MS understand people with MS. That’s about it.

  • Mandyrose
    5 years ago

    My ex-husband used to walk AHEAD of me. It was a clear sign that he didn’t intend to slow down for me. That’s why he’s my EX.

  • lisa
    5 years ago

    I’m 46 and It doesn’t look like I have MS unless You watch me walk real closely. I’m in Pain Every day too. I also have Diabetes, Gout, and Hypothyroid. Oh and HBP too. i take a lot of meds. My Left side of My body is in horrible Pain. I have to two Discs in my Neck that need fixed because pressing on spine, but I Have MS on spine so cant fix it. I just don’t say anything anymore when i’m overtired. i sit down and put my feet up!! Or lay Down!! So tired of the arguements from brother that lives off me. lol! Anyway just take care of yourself that’s all that matters. I’m currently on Tysabri for 76 Months! Will get Blood work to see if i’m +/- soon. My best friend just turned – at 76 weeks. I’m a little nervous. She is Starting Tecfidera. One Day At A Time! 😉

  • Ashley Ringstaff moderator author
    4 years ago

    Wishing you the best in your journey!

  • Mandyrose
    5 years ago

    I have been dealing with MS (RRMS>SPMS) for sixteen yrs. I was 46yrs old when diagnosed. Looking back, I had subtle symptoms for years before diagnosis. All I can speak about are my OWN experiences, of course. One common thread we all have seems to be not being understood, not being taken seriously or worst of all, ignored and abandoned. My experience is that people do NOT want to share this journey. They don’t WANT to know about MS, and don’t want to be around someone who has stopped being FUN. I accept that. It was the only way to reclaim my life. MS can be a lonely road. Lots of comparisons are made. MS is like fingerprints; no two alike.

  • nancytngirl
    5 years ago

    45 years old here, severe MS damage in my neck spine area and also been told of 2 discs in my neck needs fixed too. Me and you have the same symptoms, thank you for your comment, its a good feeling I am not alone! No one can imagine our pain. Spent the entire year 2012 is absolute agony, no relief, was given Tramadol but by the time they FINALLY believed I had any pain at all, it was pretty severe, pain pills uneffective. DR said after long last I could go to a Pain Clinic.. but I cant drive and family has been unwilling as of yet to take me there, saying how I should “give it a try” with the worthless pain meds I have now. If I take one pill of each prescription, I “might” feel better for 1 – 2 hours, considering they are supposed to last 4 hours, they never do. And hey, I just started Tysabri, 4 months, even tho I am very progressive. Can’t tell its helped yet.

  • Peaches
    5 years ago

    So, so, so agree. I get “you don’t look sick”. Am I supposed to let myself go to hell on how I look? Looking good and feeling goo are two different things. I too have to discuss or unload how I am feeling in words. Others don’t like hearing that unfortunately. But it makes me feel better. Have to ask you, what or how did you work up to not using a wheelchair, cane or walker? I currently use a cane and have a KAFO. Would love to be able to not have to depend on these. Good for you – and vent all you want 🙂

  • Mare
    5 years ago

    Dear Peaches: I agree, the comment “You Don’t Look Sick” makes me so disgusted. I still work full-time and have to use a cane occasionally. I get horrific nerve pain and the pain killers I am on get rid of about 50% of it. The rest is up to me to try to get through each day. I lay down as soon as I get home and on the weekends — needless to say, hardly any house work ever gets done.

    My neurologist said that if I need another increase (haven’t had one in 3 years) I would need pain management which is non-existent if the part of NY state that I live in. I would have to go to Buffalo which is a 6 hour drive each way for an initial consult.

    Most doctors are getting to the point that they don’t want to prescribe anything more than an Aspirin! All the reports I have read say narcotics don’t work — BS!

    I am new here and thanks for letting me VENT!

  • Ashley Ringstaff moderator author
    5 years ago

    Hey! Thanks for the reply. As for how I got out of the wheelchair, I was in one during a flare… and after steroids and slow but steady improvement, I got to using a walker/cane.. Then I went to Physical Therapy (along w/ Speech Therapy, because I was having issues swallowing and such cause half of my face was paralyzed) as well as occupational therapy. I still have some gait issues but I don’t require 24/7 assistance…

  • Dalene
    5 years ago

    I have MS and I am diabetic, so I get horrible nerve pain!Also I have overwhelming fatigue, that medication doesn’t really help. No one seems to understand when I try to explain that I am so tired,my feet are on fire and my middle section is constricted. I stand on my own 2 feet so I must be ok! Even with my cane, they just don’t understand. I don’t think anyone that does not have MS can understand what we go through!

  • Ashley Ringstaff moderator author
    5 years ago

    Kinda like that saying… “You don’t get it, till you get it.”
    Being that I’m 25, I’ve had a lot of people say things to me as to how well I look, and some people mean it in the nicest way possible.
    But others, you just know they are saying it to be snarky, and that’s when I want them to just “try” and experience what I am for a day… If only it could happen…

  • Tonia
    5 years ago

    My Ms has affected my walking, I know use a cane, but too just look at me or talk to me on the phone you can’t tell. The pain I have from time to time varies as well. I’ve noticed that the weather determines how good or bad I will feel from day to day. I do take a variety of supplements as well, they do help.

  • Ashley Ringstaff moderator author
    5 years ago

    The weather plays a BIG factor on how I’m feeling. Considering I live in Central Texas, and it’s been over 100 degrees a lot lately… I haven’t been fairing well when it comes to “getting around”… but come Winter time, I can feel the difference, and some people close to me can tell the difference.

  • LilBit
    5 years ago

    I wish that this were my problem. At one time, I had very invisible MS. I now use a walker to walk each and every waking moment and must have help to do a lot of things. Yes, nerve pain is not a fun thing to have and there are a lot of invisible symptoms that are really bad but I am at a point where I wish that people thought that I was perfectly “healthy”. I always said that the day that I stop hearing “But you look so good”, I knew that something was wrong… Sorry to vent on you BUT I just wish that this were one of my problems but unfortunately, it is not.

  • Ashley Ringstaff moderator author
    5 years ago

    I can understand where you’re coming from on that matter… Cause I’ve been there as well. It’s not that I WANT people to see that I’m sick, but for those who know that I have MS… and still make comments, that are implying that I’m making things up… that’s what I don’t like to deal with.
    The good thing is, we are all here for each other!

  • noellewright00
    5 years ago

    Preach it sister!!!!! I cannot stand the look of disbelief some of my co-worker’s have when I must leave work or when I cannot perform to my best because of MS symptoms. And you’re right; I don’t honestly tell people how I feel anymore because people don’t honestly want to know… I have pain most of the time, but what gets most people is that I can be fine one minute, and then the next minute I’m walking slower, or I have tremors in my upper body. I’ve even had one person at work talk about videotaping my while I’m out of FMLA leave. HOW HORRIBLE IS THAT???? The craziest thing is, sometimes the symptoms are so weird that I’ll, for a moment, tell myself that I am faking it, that what my body is doing can’t be real… Then I try to stop it, and reality kicks in…

  • Ashley Ringstaff moderator author
    5 years ago

    Oh wow!
    Videotaping is ridiculous… And what do they think it would show?!

  • Linda H
    5 years ago

    The first week i was on Tecfidera i was taking two 120 mg a day with no problems but then it was increased to two 240 mg by day 2 i was so nausea i could barely get out of bed and then I started having hot flashes I knew there was no way I could do this for a whole month so I called my neurologist and let them know what was going on I had already stopped taking it which he also advise me to stop taking it I told him the first 7 days was okay on the lower dosage so he decided to put me back on 2 120 milligrams a day which my system can tolerate and so far it has helped in some areas I still walk a little off balance at times but I’m still walking and I guess at my next MRI we will find out if it’s helping I used to be on rebif but I went off on my own when I didn’t havr anyone to help with the injections I was so happy to be able to start on the pill form

  • NRD
    5 years ago

    If others comments hurt or bother you, don’t express how you feel. There are enough forums, like this, designed for that expression.

  • VickiJo
    5 years ago

    I am with you 100% even my neurologist talks down the amount of pain I tell him I am in. He tells me there is no way I can be in that much pain. (Excuse my language)It fricken pisses me off him of all people should know that every case of MS is different and every case progresses differently.

  • Jan
    5 years ago

    Current “to be replaced ASAP” neuro talked down the 30 years of MS experience I have. Back and hip pain are arthritis because I’m 60.

  • laura
    5 years ago

    I am always in pain my lower back knocks me on the ground and cant move also my kneck and shoulders I can barley move my neck and its a everyday thing!!!! I have trouble doing the everyday things and it kills me theres sooooo much I want to do with my kids and I cant!!!! I walk with a cane I would love not to everyone thinks im fine but im not and im tired of defending myself!!!

  • Terri
    5 years ago

    There are things people will never understand and when they are invisible, like many MS symptoms, we have a problem explaining. A small booklet from the MS society to hand out to the people in your life, may help educate them. Knowledge is power. Journaling and keeping track of symptoms from year to year is interesting as well as you can see trends in when certain symptoms appear. If your symptoms come up after stressful events or times spent with ” toxic” people, you know to add that to the stay away from list. Spend your days doing what you want and do not worry about those that think you are exaggerating. Han them the booklet on MS symptoms and ask them to say a prayer for you and all the people that deal with this insidious illness everyday.

  • ScarlettOH
    5 years ago

    I also have extremely bad nerve pain. Sometimes, though, it simmers down, so luckily for me I don’t deal with it at that level 24/7.

    What helps me, first of all, is medication. I take gabapentin, mostly in the evenings, and I’ve found a level that quiets things pretty well, after some experimentation. It also helps with sleep, so I’m better prepared physically and mentally for the next day’s challenges. Chronic, high-level pain is horrible for us emotionally, and erodes our quality of life to the point where we may be more sensitive to the insensitivity of others, if that makes any sense.

    My other recommendation is to find an outlet for expressing your pain and frustration. Probably the best person for this is someone else with MS. Even if his or her symptoms are different, which they are likely to be, they’ll still ‘get it’ like no other. If you can find an MS buddy, allow yourselves the release of talking about all the negatives, but also decide on a time limit for this. If each gets 15 minutes, or whatever, to rant and complain, that should help immeasurably. After that, talk about or do something pleasant, no negatives allowed. A good balance, I think.

    Having a reliable outlet for your MS stuff means that you can minimize it with those who are clueless. Instead of describing pain in detail when you’re having a bad day, when asked what’s wrong you can answer just, ‘Rough day’ and leave it at that. It won’t do any good to say more anyway, and if you do, it will only raise your frustration level. So save it for your MS buddy.

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