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7 year itch...and burning, numbness, hating ms!

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    7 year itch...and burning, numbness, hating ms!

    Hi all - first time on this site. Been awhile since I sought out other MS'ers. But the 'chit' has hit the fan and I'm desperate.

    Was dx'd in July 03 - after several, random, 'unexplained' and un or mis-diagnosed episodes happened over the span of many years beginning in '94 when I was 23. After a nasty episode left perm nerve damage in my left arm & leg and a year later had optic neuritis leave missing vision in my right eye and for some strange reason began feeling worse and worse as the days passed after starting a light workout at Curves, plus the weird and unpleasant things happening to my body - I thought 'hmm...something's really wrong here. And aren't you suppose to feel BETTER as you continue to work out, not worse?' I was living in bizarro world. Still am. You give me the normal response to something - my body gives you the opposite! It was then that I finally decided to make the dr's do their job and give me some real answers and I would NOT feel guilty, stupid or that I was hypochondriac for insisting they figure out what the heck was going on and causing it all.
    When I was dx'd my first reaction was one of relief - I was not, in fact, crazy!! (well not for THIS reason, anyway) There really WAS something going on all this time!! That quickly faded to absolute fear and depression. Though I didn't really know what MS was until I got home and looked it up - then I really freaked out and my depression really sunk in. I didn't want to tell anyone at first - I was scared. I was now 'diseased', 'broken' and according to my doctor - was going to end up in a wheelchair! But hey, the 'good' news was I didn't have to worry about that for another 20-30 years! I've been living with the image of myself in a wheelchair ever since. One that I finally pushed out of my head for good just this year, actually.
    Even though things have gotten really bad. I've steadily declined since that day. Though it took awhile. I tried the shots for 6 months and felt like I was dying 6 out of 7 days of the week. I stopped and decided I wanted to live my life as fully as possible instead of just existing in hopes it would slow the progression down while I became a sick zombie. "It's better to burn out then fade away" - Def Leppard. Yes, I'm a reformed 80's rocker chick. Ok, no 'reformed' but...
    Anyway - it wasn't until sometime in 08 that I hit my first real bad rough patch. I had to go out on disability for a few weeks. Then I was good until mid 09 - this time it was worse and I was out several weeks. And when I went back - I never quite returned to a 'good' status. I was mostly just hanging on trying not to get fired. And now I'm out again. After spending over a month so sick I could barely manage to work and take care of myself. Everyday it was a choice - try to get some work done (I work from home and have a highly flexible schedule - so it's really bad when I can't even make THAT work) or brush my teeth and wash my face. Forget taking a bath or shower and getting out of my pj's wasn't even an option. But I was so scared to go on disability again that I kept trying to work, hoping that 'tomorrow I"ll feel better'. I said that for four weeks straight until finally I went off. I was barely making it from the bed to the chair in the living room and back to the bed. sleeping and laying down for days in a row and feeling just as bad. Sometimes I felt so sick I felt like I was literally dying. I knew I wasn't - well, was 75% sure I wasn't. I've had rough times before and usually just hunker down and get through them. But after weeks upon weeks without many breaks - it really started to get to me.
    I have a young daughter and am single parent -with a live in love who is really helpful, especially when my world stops and I can't do anything. He takes over and helps as much as he can.
    Anyway - it's gotten so bad that I really think there's more than just MS going on. I have doctor's appts scheduled to see what's going on. My MS has been really debilitating at times but usually the really bad times are for short periods - a couple days or so. Then I get a reprieve. My 'good' days would still equate to a normal, healthy persons nightmare. But I've adapted fairly well to dealing with it all and still managing. As long as I have my pain pills, a freezing cold house and lots of rest.
    Before my first time out on STD in 07 - the MS was frustrating and depressing. There were so many limits in my life and I missed them. I missed dancing, skiing, bike riding...going outside in the summer! I keep vampire hours now a days.
    I try to make light of things, laugh as much as possible and not take things to seriously. I can't fix it but I can make the best of what I have to work with. I have a dark sense of humor and sarcasm is a must for me. Doesn't work for everyone, I know. Anyway - things were hard compared to my healthier days...but I could still live a fairly good, productive life. Then I hit these periods of being knocked on the floor. It's not the nerve pain or muscle weakness that stops me. It's incredible fatigue, body weakness (like someone pulled the plug and no energy is there), migraines, dizziness, nausea, hot/cold sweats, feeling like I'm going to puke, fall down and/or pass out when I'd be up and around or even just sitting upright. feeling out of breath even at rest and just an all over feeling of 'sickness'. So bad I could barely get myself up to the bathroom to use it, couldn't get myself to the kitchen to eat - so being at home alone most of the day would just not eat!!
    Anyway - my neuro told me earlier this year that some of what I'm going through doesn't fit MS - it sounds metobolic . I looked up other autoimmune diseases and much of what I go through is text book MS. But some of it sounds like it could be Thyroid based. One 'holistic' doctor said I had signs of Adrenal Gland problems. So I'm going to push them to do some specific tests.
    Tonight - right now as I've been writing this - is one of the better moments I've had. Over the weeks I've had some reprieves...but they last for short periods of time. Then I slump down again and things just go to pieces.
    My life is so screwed up right now and feeling so out of control, helpless - unable to even do the basic things for myself day to day regularly - is getting to be unbearable. It's like my entire life just stops because I can't DO anything about it. I'm too busy trying to get myself up and across the room! It's a miserable way to 'exist' because it sure as heck isn't living. I've lost myself. Me as a sick person is not really me. And I miss me. I miss being able to enjoy life, enjoy my daughter, my boyfriend, my family, my friends, working, life in general. I see 80 year olds out there spinning circles around me, living life and I feel envious! I'm too young to be this sick. I feel so absolutely trapped in this body that doesn't work!!!
    What's even more frustrating is - it does work. I'm still fairly strong and capable - when all of this crap isn't happening. But when it is - it's like everything just shuts down and my entire body goes haywire, nothing works right, my temperature is going from one extreme to the next within minutes, I feel like I'm literally dying it feels so awful. I feel like I have a rock in my stomach constantly. There are so many things going wrong it's quicker to list what's not. It's so complicated and there's so many things happening at once that's it's overwhelming and hard to even describe most of the time. I try to remember things I felt before MS hit - to try and come up with things that other people might kind of understand or relate it to. But before I started experiencing these things - I'd never felt anything like it before. It's 'different' than normal things. I couldn't have imagined what this is like before I actually went through it myself. So I know it's going to be hard for others to understand.
    I wouldn't wish this on my worst enemy!! Well - maybe my absolute worst!!
    Anyway - I know I've rambled on and on. I don't even know if I made sense. Thinking clearly and processing things has really become an issue. Right now - it seems fairly decent but that's to me. I have no idea if I really AM making sense or just babbling.
    It's hard because though I think about it all the time - as I'm living with it all the time. I don't TALK about it very much with people. So when I do finally start sharing - so much is pent up!!! It spills out and half the time in no particular order and there's too much to remember even. But then I think - who wants to hear about all this anyway???
    Well - I don't know if this was really the best introduction for my first post here. I'll try to do better and be much shorter here on out!! But it does feel good to get this out of my head sometimes. So thanks for 'listening'. =)

    And does anyone else go through feeling really 'sick' like this? Is this possibly all just the MS complications??

    #2
    Drgnlny, no need for apologies on your post. This is why we are here. I will say I am very sorry for the problems and add a short note. I am used to blaming everything on MS. I have had some issues that I assumed were MS and igored them for a year. Now it seems that the sxs probably are due to a blocked common bile duct and they are checking into the mass they see. Mine is a metabolic problem with bile buildup and I ignored it. MS people get other things too so don't waste time with being mad at MS. Let them find out what it might be in addition to the MS. Your life could depend on it. Not trying to scare you but encourage you to not do as I did.
    "...the joy of the Lord is your (my) strength." Nehemiah 8:10

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      #3
      Hating MS is a-ok!

      I am pretty sure that I was dealing with my MS sx since 1995. I went through a bunch of misdiagnoses and finally someone realized that all these things were not because of stress, a pinched nerve or whatever else it was that month....

      Welcome to a place where you are allowed to be angry and hating the feeling of being sick of being sick! It's not fun to deal with things that no one seems to understand, except others that are in the same bizzarro would as you!

      Welcome and understand, I hate ms too, and I am proud to be a unwelcoming person of the disease. I know that there are worse things in the world than this, but it doesn't make it better in my personal life. What makes it better is that I know I am not alone, and that I can laugh during the worse of times... except when I don't want to be "ok" and then I have this place to be not ok.

      Welcome to one of the best supports I have found and guess what, it's not someone else that has ms that someone knows... its a place of many and a freedom to be okay or miserable!

      Comment


        #4
        Hello drgnlny

        Welcome to the MS World Forums. This is a good place to share all your pent up stuff with others who 'get it'.

        MS can make a person feel pretty bad, but as was mentioned, there could be something else going on. It's good that you'll be having more tests.

        Hopefully you will feel better soon. Just know we're here for you.

        Keep us informed as to what you find out, ok?

        Take care,
        KoKo
        PPMS for 26 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          Hi there

          As you will read, we all find ourselves reeling from the affects this nasty thing does to us.

          Hating the MS is natural and acceptable. Hope you find out what the other things are if not MS related so you can get some relief.

          Come back often and vent all you need to. But can I ask for one favor, please separate your paragraphs. I have (and many others do too) a hard time reading long posts that don't have breaks in them. Just something that not everyone realizes. Pretty please.

          BTW, I think you stated your feelings very well. Never worry about that you are amongst Friends here. Arms and hearts are open.

          Comment


            #6
            Thank you!!

            I so very much appreciate the welcome and kindness! And the understanding of the need to also acknowledge and vent about the not so great times we all face. It is truly refreshing to know I'm talking to people who know. It does make me feel less alone and isolated!

            I am definitely looking at other potential problems that could be contributing to what I've been going through recently. I did get labs back and they post them online right away - so I looked through and one that was at the high end turns out to be Thyroid related and according to a few articles I read there's a more accurate range that 'should' be used by dr's, especially in cases where symptoms are present - with that the 'high' is 3.0 and mine is 5.0 plus matching symptoms. And according to one physicians site, in women if it's over 2.0 it's a concern in general, and of course, esp with symptoms. So, this may be something. I haven't heard from my dr yet but I'll be contacting her on Mon or send the email over the weekend.

            I also found out my main pain med could also be a contributing factor. One more thing to look at - maybe switching to another could be helpful. In any case - it's worth looking into.

            Thankfully, I've felt some relief over the past few days. It's literally like and night and day. I'm not running around and dancing on the ceiling or anything, still needing a TON of rest but at least when I am awake, I'm not absolutely miserable the whole time. And I've been able to do some very moderate activity on a couple days. Today I felt it and spent most of it sleeping and resting. But I feel 'decent' at least. I'm hoping it's a good sign that the worst has passed.

            But I don't want to not follow up on the results because I don't want what I've been going through to keep happening IF there's something that can prevent it.

            I very much appreciate the concern and the advise about not lumping it all into MS. It was what I did at first, too. And then when I started to wonder if other things could be happening - my initial responses from my primary care doctor was to blame it on MS. It was my Neuro who treats me for MS who was finally the one to say it's not always MS and treating things as such could be dangerous. That was what led to me insisting on all the tests and what led me to switch to a new primary care doctor! I think it was a good choice - so far, she seems to be willing to look at everything and really work with me to find answers.

            I hope this is better - spacing out my paragraphs! I didn't think of that - even though I, myself, have trouble reading things layed out that way!! So thank you for pointing that out!

            It's been a couple of years since I last found online support with MS where the people were down to earth, genuine and realistic about it all. Willing to discuss the good and the not so good. Puting judgements and labels aside and just being human first and foremost. And I've missed having that more than I realized. I'm thankful to have found this site and am grateful for the support, understanding and opportunity to learn from others!! And especially the open arms, minds and hearts!!

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