Explaining Ms To Other People

I am still at the early stages of MS (if that is what I have, I have yet to receive a diagnosis, although my neurologist is convinced it is the most likely the case).

For the most part, I am able to carry on as before without issue.  My main symptoms right now are muscle fatigue, particularly at the top of my legs, but on bad days it goes down to my feet.  I also get occasional bouts of nausea and odd tension and pressure build up in my head (behind my ears and into the back of my head).  I can't say these are headaches - because there is no pain, just...well.... pressure.

I am slowly learning how to manage these symptoms and take back as much control as I can, but it is hard.

One of the most difficult things I am finding is explaining all these symptoms to other people.  If I use the words "fatigue" or "exhaustion" people don't really understand what I mean.  If I say my legs are tired - the assumption is that I am in pain and simply need painkillers and a good night's sleep. (Sometimes that is true, but sometimes a good night's sleep has no effect.  It certainly is not "the cure").

If I talk about the tension and pressure headaches people just assume I am talking about a head cold, and again all I need is cold/flu meds and a good night's rest.

The worst part is if a friend, or member of my family wants me to spend a day with them out and about (like a long walk around town), or if they want my help with something physical (like help gardening etc), they don't understand my hesitancy.  Whilst yes, I can still do these things, I have to limit the time I spend doing them.  I have to "wait and see" how I feel on the day in question, and then take note of how my body manages the activity.   If I feel anything is wrong, I have to tell them I need to stop, that I have had enough. 

I've made the mistake before of spending a whole afternoon out gardening, not noticing any problems, only to find on the following day my legs are exhausted and that I am barely able to walk around the house, never mind do anything else. 

But of course, people just don't understand this stuff.  In their eyes, they see a perfectly capable human being (which for the most part I am still, I just move a little slower, a little more carefully than other people).  If I am having a "bad day", they don't understand what that means.  The assumption is that I am being lazy, or being contrary because I'm in a bad mood. 

I guess, I don't really blame them though - I had no understanding of MS before now.  I probably wouldn't have understood this stuff either if I hadn't experienced it. 
Opalgem Opalgem
36-40, F
15 Responses Jun 24, 2010

Since finding EP I've come across so many stories of people with chronic illness. People diagnosed with MS, Graves disease, hypothyroidism, psychological disorders. It kills me to think of so many people out there effected by these issues everyday. A little over two years ago I developed a unexplainable chronic illness. After numaruss doctor visits, blood tests, ect I was on my way to a formal medical diagnosis when I found a coralation between the onset of my illness and some dental work I had done. This lead me to identifying the root cause of my illness, heavy metal toxicity. After having seven metal fillings removed from my mouth my health has improved greatly. There are many types of heavy metals that are detrimental to human health and many ways you can become exposed to them. If you have a chronic illness or know someone that does please look into heavy metal toxisity and help me spread the word about its debilitating effects. Thanks.

I was diagnosed almost exacly a year ago. My Dr. was quick to diagnos and even quicker to get me on medication (Avonex) He said any symptom could be permanent and he wasnt willing to take that risk. Medication was the only way we could slow this down. Since being on Avonex (which made me extremely sick for a while and still does a little) I am almost symptom free....well at least the BIG symptoms I was having!!! Does any one else take Avonex? I was also told I cannot become pregnant because of the meds and my Dr. does not want me off them at least not for a few years....anyone else having this dilema? I am currently on a waiting list to adopt :)

No one has mentioned medication! Is anyone on medication above?

No one has mentioned medication! Is anyone on medication above?

I have ms since 2003, I have since progressed with my ms. In the process finding out I have a vitamin D3 difficency among others, which has to deal with the immune system. I was unaware that ms could cause vitamin difficencies affecting my kidneys bones etc.<br />
I am currently undergoing other testing I am lucky I have a supportive husband cause at times It's easy to feel alone, especially when people don't uderstand or think your ok. I take one day at a time and I tell myself I'm incharge of my life not ms. Malissa

Thanks Anastasia12 and ms1990. <br />
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I am sorry you are both going through this frustrating illness too. Trust us to get an illness that makes no sense to other people. Doesn't it sometimes feel like some big, awful, joke being played on you? Or some creature you have to learn to live with, and be respectful to, or it will turn around and kick you.... hard!<br />
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You have to have a sense of humour to deal with it all. <br />
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I find I am find as long as I stay indoors, moving around the house is barely a problem. As soon as I step outside, and have to deal with things like weather, traffic, long journeys, talking to people - that is when I feel drained and stressed and feel like I just wanna go home. <br />
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ms1990 - I get what you are saying about making the most of the good days, and enjoying life where you can. I think it is important to encourage enjoyment of your life... stress and worry will take over otherwise, and nobody needs that. We all deserve to live a good life.. MS or no MS.

I am very glad that I came across your story opalgem. I was personally diagnosed with ms in april 2010 at the age of 19. I thought I was the only one who felt as though other people just thought I was being lazy or uninterested in doing things with people now. I also do the same as you and find myself unable to tell people I can do certain things until the specific day that someone wants to do something with me. Multiple sclerosis seems so unpredictable that one day I can feel just fine and able to do anying and then the next day I could feel as though I don't even have the energy to pull myself out of bed and so this makes it hard to plan things in advance. I guess I just have to make the most of the days that I feel fine. I hope you get a definite diagnosis as soon as possible. I know how irritating it is having these symptoms yet it seems to take forever for doctors to put all the pieces together to diagnose whatever you have.

Thanks for posting this. I was diagnosed in 2008 and til very recently, have been feeling fine. Lately, the fatigue is almost unbearable and I am so thankful to have a boyfriend who understands that sometimes, it's honestly too much to walk the six blocks to the movie theater. Today is one of those days. In facts he yells (not really, he's English - he scolds instead) at me when he sees that I'm pushing myself when I should speak up and say I just can't do something. Some days, we have to admit we aren't Superwoman/man and take a break.

Thanks, doing my best to stay chipper and enjoy myself. Life isn't all bad. :)

Thanks for the comments folks. I think I wrote my story just to get these thoughts out of my head. Perhaps it will help other people understand what it is like.<br />
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I have had all the tests, spent a week in hospital getting everything checked out. My lumbar puncture came back clear, but MRI showed some brain lesions. Neurologist thinks they are MS related, but doesn't want to give a definite diagnosis of MS until symptoms progress. He says there is a chance the lesions could be unrelated to MS. He wants to be absolutely sure. At the moment all I'm experiencing is fatigue. I'm not in any pain, or unable to live my life. So I'll carry on as I am.<br />
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Lonelyvet - Good for you for not letting this get in the way of your life. I think it is more important now to live a good life, and keep on enjoying and experiencing the best life has to offer.

I am extremely lucky, I was diagnosed within a month of my first real symptoms. I have had MS for 11 years now (well, since diagnosis) and I am fully functioning, work full time, and just had a child. there have been some big ups and downs, one major relapse, a separation, and other stuff. But I remain on top because, well, I am not oing to let this disease get me. I have made my adjustments in life -- no longr go out in the heat for long periods, try to get sleep and not burn the midnight oil, etc -- and I feel I am doing well. I am more than happy to chat with anyone about it. When I was first diagnosed I spent 2 years wallowing and not enjoying my life. If you feel you have MS and no one can tell you, then see someone else. You need MRI signs AND a spinal tap to dignose this disease. Hang in there everyone.

I can totally relate. I actually printed your post to show to my family and friends. I unfortunately have many more symptoms all related to MS and am still undiagnosed after 8 years of hell. You are so lucky to have a Dr. who is believing the fact that you probably have the early stages of MS. I have seen 6 different Dr.s over the years, spent all of my money only to have them spend 10 min. not listening to me and not believing all of my symptoms were really happening to me.<br />
The best advice I can give you is to get support from people like this on here who konw what you are going through, be thankful that you have a good Dr. and realize that it will always be a challenge to try to get people to even begin to understand what you go through on a daily basis. I would suggest doing what I did and printing out some stories and comments from other people who are going through this and share it with your loved ones so they can see it in black and white and that you are not the only one out there.<br />
I wish you the best of luck! chin up!

amandacarol - Thanks so much for your comment. I'll be happy to talk with you. <br />
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I'm sorry you are going through this too, although I'm glad to hear your partner is supporting you. That must help you a great deal. You also seem to have a great outlook on life. I know its hard, but that positivity can only help you. I wish you luck too.

OMG!! I am going through the same exact stuff. I was diagnosed about 3 months ago with my first attack of optic neuritis and had to do the 5 day steroid iv. I didn't have any symptoms for a long time after that. But I started this rebif inj. and now I my body hurts constantly, I get exhausted just walking from the house to the car. My legs feel like they are bruised black and blue on the top part and on bad nights it goes to all the way down to my feet. I am going to another doctor because mine treats me like one of the millions with ms instead of an individual with ms. I've had no guidance, every day is a mystery and I experience new stuff and new pain everyday. I completely understand what you're going through and I pray that it gets better and easier for you. I know that you're probably down right now but I've only kept this fight going because of an amazing partner and the faith so strong that I don't believe God would give us something we couldn't handle. If possible I would like you to keep me updated on how you're doing, and i would be more than happy to let you know any info that I get on those sypmtoms. Best of luck.

Thanks, I'll keep that in mind.