Delilah008
09-02-2008, 10:50 AM
I just feel like venting about my symptoms right now. I've been out of work since Wednesday and home since Thursday. I've finished my steroid IV treatment and now am on a pill taper. I am finding that I have pretty much zilch energy throughout the day and am still having some trouble with my balance.
It's weird, on Saturday (or as it Sunday?) I woke up and actually felt good. I had energy, I cleaned up around the house a little bit. It lasted for about an hour before I crashed. I don't fall asleep, I just feel absolutely exhausted. Sleep doesn't really seem to help.
I feel like I'm being incredibly lazy since all I've been doing for 5 days now is sitting in front of the computer and playing video games. At some points in the day I feel like I'm getting better, i.e. have more energy, walk better, and then it hits me all over again. My legs feel stiff and weak, my head feels like it's stuffed full of cotton and I'm dizzy.
I'm incredibly frustrated that it keeps going back and forth like this. Somehow, I still want to believe that I'm being overly dramatic and that this ISN'T really happening. I haven't even been able to lay on my back at night 'cause it spasms as soon as I try to relax my muscles.
Part of me wants to go back to work right now, but I have a physically demanding job that requires being up on my feet and moving all day. I can barely turn around in the hallway without grabbing onto a wall for support so obviously working it out of the question right now.
Sorry this is so whiny but I had to release this stuff somewhere.
It's weird, on Saturday (or as it Sunday?) I woke up and actually felt good. I had energy, I cleaned up around the house a little bit. It lasted for about an hour before I crashed. I don't fall asleep, I just feel absolutely exhausted. Sleep doesn't really seem to help.
I feel like I'm being incredibly lazy since all I've been doing for 5 days now is sitting in front of the computer and playing video games. At some points in the day I feel like I'm getting better, i.e. have more energy, walk better, and then it hits me all over again. My legs feel stiff and weak, my head feels like it's stuffed full of cotton and I'm dizzy.
I'm incredibly frustrated that it keeps going back and forth like this. Somehow, I still want to believe that I'm being overly dramatic and that this ISN'T really happening. I haven't even been able to lay on my back at night 'cause it spasms as soon as I try to relax my muscles.
Part of me wants to go back to work right now, but I have a physically demanding job that requires being up on my feet and moving all day. I can barely turn around in the hallway without grabbing onto a wall for support so obviously working it out of the question right now.
Sorry this is so whiny but I had to release this stuff somewhere.
Sponsor
Snoopy61
09-02-2008, 11:17 AM
Delilah,
You will need to take it slow. Getting a burst of energy is great unfortunately, it also makes you think you can do more than what you should be doing.
Focus on your mobility, your legs. Take very short walks - maybe out your door and pick a spot to walk to (not very far), turn around, go back inside, sit down and see how you feel. Close your eyes and sleep if you need to or just sit and rest for a bit. Do this 3 maybe 4 times a day and you will probably start to notice your able to increase your distance -slowly.
Your not lazy. Exacerbation can be exhausting and frustrating. Your not going to do steroids and then be back the way you were before the exacerbation, at least not right away.
Recovering from an exacerbation can be a slow frustrating process.
Talk to you boss and see what can be done to accomodate your current physical ability. You also have the right to use a wheelchair at work to help until you can get your legs to work better.
You will need to take it slow. Getting a burst of energy is great unfortunately, it also makes you think you can do more than what you should be doing.
Focus on your mobility, your legs. Take very short walks - maybe out your door and pick a spot to walk to (not very far), turn around, go back inside, sit down and see how you feel. Close your eyes and sleep if you need to or just sit and rest for a bit. Do this 3 maybe 4 times a day and you will probably start to notice your able to increase your distance -slowly.
Your not lazy. Exacerbation can be exhausting and frustrating. Your not going to do steroids and then be back the way you were before the exacerbation, at least not right away.
Recovering from an exacerbation can be a slow frustrating process.
Talk to you boss and see what can be done to accomodate your current physical ability. You also have the right to use a wheelchair at work to help until you can get your legs to work better.
Delilah008
09-02-2008, 01:53 PM
Thanks Snoopy. I did as you suggested and my victory for the day is having walked to the mailbox to send some mail. My mantra the whole way was "walk like a normal person".
I pretty much made it except for the wobbly doll moments. Let's see how I feel line a bit. :cool:
I pretty much made it except for the wobbly doll moments. Let's see how I feel line a bit. :cool:
redVWbug77
09-02-2008, 03:21 PM
I'm just guessing that you are NOT lazy. I have some good friends in the medical field that have spent years assurring me that I was not lazy before and I'm not lazy now; but, you do have MS and you have to learn to pace yourself.God luck
Snoopy61
09-02-2008, 05:56 PM
Thanks Snoopy. I did as you suggested and my victory for the day is having walked to the mailbox to send some mail. My mantra the whole way was "walk like a normal person".
I pretty much made it except for the wobbly doll moments. Let's see how I feel line a bit. :cool:
I am glad to hear you refer to making it to the mailbox and back as a victory :)
You might find using a walker helpful when out walking. It would help you be more stable. You don't have to think of the walker as permanent but as a way to help you recover your mobility in safety.
Let me know how it's going - I've been there....5 times. I know the frustration and tears as you try and regain your mobility.
I pretty much made it except for the wobbly doll moments. Let's see how I feel line a bit. :cool:
I am glad to hear you refer to making it to the mailbox and back as a victory :)
You might find using a walker helpful when out walking. It would help you be more stable. You don't have to think of the walker as permanent but as a way to help you recover your mobility in safety.
Let me know how it's going - I've been there....5 times. I know the frustration and tears as you try and regain your mobility.
Nenu
09-02-2008, 06:14 PM
Any day you spend walking should be cherished in my opinion.
Just take it easy love! :)
Just take it easy love! :)
Bearygood
09-02-2008, 10:22 PM
Delilah, what Snoopy and Nenu said.
I hope you wound up feeling okay after your "workout". :)
I hope you wound up feeling okay after your "workout". :)
DavidLeeK
09-03-2008, 12:38 AM
it can be frustrating for sure, since i was diagnosed in June and my symptoms from this attack starting on May 10th, i still have a bunch of issues, but getting better
i smacked him forehead on the door frame coming out of the bathroom, all i could say was 'whoops', because my balance isn't perfect yet, i could barely walk 6-8 weeks ago, but i now walk 2-4 miles every night, and thank god i stopped pissing my pants :D
i'm starting to get more feeling back in my right hand and arm, before they were almost completely numb, more like fallen asleep, i have back pain and feels like something is crawling up my back to my neck, but better than when my neck and shoulder were numb weeks ago
my left side has gotten better also, only burning below the knee, before that it went all the way up to my chest
so i know the frustration, make sure you exercise, eat well and take your vitamins and drink plenty of fluids, it will help
i did some serious hikes in the mountains last week, i got an evaporative vest to keep myself cool, works great
best wishes
i smacked him forehead on the door frame coming out of the bathroom, all i could say was 'whoops', because my balance isn't perfect yet, i could barely walk 6-8 weeks ago, but i now walk 2-4 miles every night, and thank god i stopped pissing my pants :D
i'm starting to get more feeling back in my right hand and arm, before they were almost completely numb, more like fallen asleep, i have back pain and feels like something is crawling up my back to my neck, but better than when my neck and shoulder were numb weeks ago
my left side has gotten better also, only burning below the knee, before that it went all the way up to my chest
so i know the frustration, make sure you exercise, eat well and take your vitamins and drink plenty of fluids, it will help
i did some serious hikes in the mountains last week, i got an evaporative vest to keep myself cool, works great
best wishes
Delilah008
09-06-2008, 02:52 PM
I just got back from grocery shopping with DH. What an adventure! I started out walking just fine. That lasted about 10ish minutes before my leg started doing it's own jig again. I ended up leaning on the cart and he caught me a few times when my balance really got bad.
I squatted down to look at something and couldn't get back up on my own. I literally had no strength to get up.
Halfway through the trip I had this overwhelming feeling of total exhaustion and I started to cry. No idea why. I was coherent and talking through the whole thing. Just as suddenly as it started, it stopped.
Then my second toe on each foot cramped up. First on my right and then on my left. The one on my left lasted much longer and I could feel the cramp in my heel too. Eventually it stopped but boy was it painful.
I guess I should be happy that I'm walking but boy was that trip annoying.:mad:
I squatted down to look at something and couldn't get back up on my own. I literally had no strength to get up.
Halfway through the trip I had this overwhelming feeling of total exhaustion and I started to cry. No idea why. I was coherent and talking through the whole thing. Just as suddenly as it started, it stopped.
Then my second toe on each foot cramped up. First on my right and then on my left. The one on my left lasted much longer and I could feel the cramp in my heel too. Eventually it stopped but boy was it painful.
I guess I should be happy that I'm walking but boy was that trip annoying.:mad:
MSNik
09-06-2008, 03:18 PM
Delilah, I know u are terrified, but I have to say, after reading all of your posts this week, you are not taking control of this situation at all. Youre really alllowing the fear and anxiety, which are REAL to overtake you. Nothing has changed with you from last month to this month; you are just more aware of it and allowing yourself to be overtaken by it.
In the grand scheme of things, no one ever has gotten MS overnight. It takes years for this disease to appear, so in reality you are no different then you were a year ago! But now the symtoms are showing up- and its frightening. And I know this to be true. I remember quite well what it was like...the idea of MS itself is horrifying, until you start to live with it and realize that its not changing you..and it doesnt always have to be a bad day. Some people get soar throats once or twice a year, we get attacks now and then. Think of it that way. of course our "unknowns" are scary...and you hear horror stories of people with MS, which is also terrifying..but thats really all it is. Horror stories. 99% of the people here work, cook, clean, shop, take care of families and manage their MS in one way or another. Thats why this board is so incredible. We are real people with real issues and we manage them with alot of support from each other.
So I dont want you to think im not being supportive, because I do remember being in your shoes and I know how scary it is/was. BUT more importantly, I need you to realize that you are allowing some of it to happen by being so afraid of it....maybe you should speak to your doc about helping you with some Xanax or another antianxiety drug for awhile. I took them in the beginning and they really did help me. It takes the edge off so that its not first and foremost in your mind all the time. In the meantime, you are stil going to get a cold, or a soar throat, your leg might hurt from over exercising or bumping into something- its NOT all MS related and thats one of the hardest things to determine in the early stages of dx..realizing that you are the same you that you were last year is important. How you see yourself will have everything to do with how others see you! Trust me on that one, i just posted about it if you care to look.....
Youre going to be okay sweetie....you will get thru this stage and move on to a better one. MS teaches us alot about ourselves and one of the best things Ive learned is to live each day for what it is...not what it isnt.
Hugs
Nikki
In the grand scheme of things, no one ever has gotten MS overnight. It takes years for this disease to appear, so in reality you are no different then you were a year ago! But now the symtoms are showing up- and its frightening. And I know this to be true. I remember quite well what it was like...the idea of MS itself is horrifying, until you start to live with it and realize that its not changing you..and it doesnt always have to be a bad day. Some people get soar throats once or twice a year, we get attacks now and then. Think of it that way. of course our "unknowns" are scary...and you hear horror stories of people with MS, which is also terrifying..but thats really all it is. Horror stories. 99% of the people here work, cook, clean, shop, take care of families and manage their MS in one way or another. Thats why this board is so incredible. We are real people with real issues and we manage them with alot of support from each other.
So I dont want you to think im not being supportive, because I do remember being in your shoes and I know how scary it is/was. BUT more importantly, I need you to realize that you are allowing some of it to happen by being so afraid of it....maybe you should speak to your doc about helping you with some Xanax or another antianxiety drug for awhile. I took them in the beginning and they really did help me. It takes the edge off so that its not first and foremost in your mind all the time. In the meantime, you are stil going to get a cold, or a soar throat, your leg might hurt from over exercising or bumping into something- its NOT all MS related and thats one of the hardest things to determine in the early stages of dx..realizing that you are the same you that you were last year is important. How you see yourself will have everything to do with how others see you! Trust me on that one, i just posted about it if you care to look.....
Youre going to be okay sweetie....you will get thru this stage and move on to a better one. MS teaches us alot about ourselves and one of the best things Ive learned is to live each day for what it is...not what it isnt.
Hugs
Nikki
Snoopy61
09-06-2008, 06:21 PM
Nikki,
I'm not sure your really getting it. Right now Delilah IS NOT in control the MS is. She is NOT doing this to herself the MS is doing it.
Delilah's MS is affecting her legs, her mobility. This is NOT anxiety related. This is MS related and for the person dealing with the affects the MS is having on their mobility it can be very frustrating and yes scary.
I have NOT seen a single thing about what Delilah has said that is anxiety related.
When this disease affects your mobility it becomes a struggle just to do simple things, to even accomplish shopping, working, cleaning, cooking or just trying to have an enjoyable walk.
While she is still dealing with the exacerbation or the after affects of it nothing is simple or easy.
Again, what Delilah is dealing with is the effects of Multiple Sclerosis NOT anxiety.
I'm not sure your really getting it. Right now Delilah IS NOT in control the MS is. She is NOT doing this to herself the MS is doing it.
Delilah's MS is affecting her legs, her mobility. This is NOT anxiety related. This is MS related and for the person dealing with the affects the MS is having on their mobility it can be very frustrating and yes scary.
I have NOT seen a single thing about what Delilah has said that is anxiety related.
When this disease affects your mobility it becomes a struggle just to do simple things, to even accomplish shopping, working, cleaning, cooking or just trying to have an enjoyable walk.
While she is still dealing with the exacerbation or the after affects of it nothing is simple or easy.
Again, what Delilah is dealing with is the effects of Multiple Sclerosis NOT anxiety.
MSNik
09-06-2008, 07:40 PM
Snoopy, I would never dare to argue with you, because I do know that what you are saying is true in many cases. My answer was based on the number of DIFFERENT symtoms and posts which Delilah has posted in the past few days and seeing something "more' then just this last issue.
Im sorry Delilah, I never meant to intone that this was YOUR fault. Its very true that MS can cause all of this and be comletely UNrelated to anxiety. what Snoopy says is true. I also never meant to insinuate that you needed any help other then your upcoming appt with the Neuro. What I was trying to say here was that you are obviously stating SO MANY things which you are FREAKING OUT OVER that possiblly to get you thru this difficult time, you might want to consult your general phyicisan to help prescribe you something which might help you until you see your doc in November.
You have so many different issues here, and yes, they might all be very much MS related, but what Im reading is that your fear that it is MS is causing you to overthink some of this. Although it could be related, it quite possibly might not. This is where the testing comes in and the specialists appointment. I wish you the best Delilah.
Nikki
Im sorry Delilah, I never meant to intone that this was YOUR fault. Its very true that MS can cause all of this and be comletely UNrelated to anxiety. what Snoopy says is true. I also never meant to insinuate that you needed any help other then your upcoming appt with the Neuro. What I was trying to say here was that you are obviously stating SO MANY things which you are FREAKING OUT OVER that possiblly to get you thru this difficult time, you might want to consult your general phyicisan to help prescribe you something which might help you until you see your doc in November.
You have so many different issues here, and yes, they might all be very much MS related, but what Im reading is that your fear that it is MS is causing you to overthink some of this. Although it could be related, it quite possibly might not. This is where the testing comes in and the specialists appointment. I wish you the best Delilah.
Nikki
Delilah008
09-07-2008, 11:51 AM
No problem. I don't think fear really plays a role in what I'm feeling. I've always been a very logical and analytical person so I tend to plan things. My MS symptoms right now making planning difficult because of the uncertainty, but that doesn't mean I'm not planning.
The spontaneous crying that I talked about really had nothing to do with anxiety. It literally comes out of no where, and is usually associated with a "wave" of dizzy/weak feeling. (At least lately it has). The neuro thinks I may have some emotionaly lability caused by the MS since I now tear up or outright cry for what seems like no reason. Much different than when I was a teenager. I would have to agree with Snoopy on this, anxiety is really not at all what I'm feeling. (Well, a little anxiety about our finances but not about the MS itself).
I certainly am frustrated with my symptoms, as I think is normal in this situation, but I do know that they are getting better. They're just not getting better as fast as I want. But then again, I'm a type A personality and I usually want things done yesterday.
That being said, I'm walking 100% better than yesterday. Still feel some residual stuff, but I'm definitely seeing myself going back to work this week. Yay!
I live and enjoy each day as it comes. There's really no point in worrying about it, planning for possibilities, yes (no point in sticking your head in the ground), but definintely no point in worrying about my MS.
The spontaneous crying that I talked about really had nothing to do with anxiety. It literally comes out of no where, and is usually associated with a "wave" of dizzy/weak feeling. (At least lately it has). The neuro thinks I may have some emotionaly lability caused by the MS since I now tear up or outright cry for what seems like no reason. Much different than when I was a teenager. I would have to agree with Snoopy on this, anxiety is really not at all what I'm feeling. (Well, a little anxiety about our finances but not about the MS itself).
I certainly am frustrated with my symptoms, as I think is normal in this situation, but I do know that they are getting better. They're just not getting better as fast as I want. But then again, I'm a type A personality and I usually want things done yesterday.
That being said, I'm walking 100% better than yesterday. Still feel some residual stuff, but I'm definitely seeing myself going back to work this week. Yay!
I live and enjoy each day as it comes. There's really no point in worrying about it, planning for possibilities, yes (no point in sticking your head in the ground), but definintely no point in worrying about my MS.
Bearygood
09-07-2008, 12:10 PM
Delilah, the emotional component is very common. It can be a combination of so many things. Even frustration unto itself can lead to tears. It can be a hard lesson, MS or not, to acknowledge that we have limitations and even those of us with MS who are not very symptomatic live every day with the fear of the unknown. We just have to try not dwell on it and some days it takes more energy than others.
Are you doing any PT and if not, might that be something to look into? I don't know the answer to this -- just asking.
Are you doing any PT and if not, might that be something to look into? I don't know the answer to this -- just asking.
Delilah008
09-07-2008, 01:23 PM
I woudl agree that emotions play a huge part in MS. Last year, when I was first diagnosed my emotions were everywhere. I even had nightmares or being deaf and blind!
However, I now tear up at happy endings, cute commercials, sad endings, courageous moments, anything. That has never been normal for me.
Forgive me but I'm not an anxious person. I think I'll stop trying to convince you all of that.
However, I now tear up at happy endings, cute commercials, sad endings, courageous moments, anything. That has never been normal for me.
Forgive me but I'm not an anxious person. I think I'll stop trying to convince you all of that.
Bearygood
09-07-2008, 01:40 PM
Forgive me but I'm not an anxious person. I think I'll stop trying to convince you all of that.
:confused: I wasn't meaning to imply that by my response at all. I think most of us do understand.
:confused: I wasn't meaning to imply that by my response at all. I think most of us do understand.
MSNik
09-07-2008, 08:41 PM
Delilah, I wanted to add, too- that you have convinced me. You are experiencing symtoms which I myself do not have; however listening to you today, im convinced its not anxiety! Im glad you are feeling stronger today and that you feel youll be back at work soon. Wishing the best for you.
Nikki
Nikki
Smilestx123
09-09-2008, 03:04 PM
I wanted to throw a question into the topic at hand. I have not been officially diagnosed with MS. However, I am CERTAIN I have it. Today I was seen by a neurologist that was not able to really pay attention to me because she got a phone call that needed her to go "downstairs". I have had physical issues all of my life. I am a very young hearted 32 year old with 4 children and I have a huge medical record due to surgeries I have had, or pain, or seizures, numbness, tingling, stress....The list goes on. I have a "cyst" on my temporal lobe that was discovered by two different hospitals due to chronic migraines. Today, a major hospital in this area said it didnt exist and wanted me to have a consult with Psychology for what they call "stress related seizures", or non-epileptic seizures.
I also want to let you know that I am not one to go to the doctor when I feel the slightest ache, and I can't stand the effects that pain meds have on me, therefore I dont ask for them.
My symptoms include:
Seizures affecting my facial expression , neck muscles and eyes.
Severe leg pain (To the point some days I find it very difficult to even walk). Upper and lower legs. Primarily the lower leg, but I also have thigh pain.
Heat sensitivity (Hot baths, showers or sun exposure).
Knee pain (Some days the left knee will have terrible pain, the next it is my right. I often get buzzing sensations under my knee cap).
Numbness in several places of my body, especially my face (primarily the right side), my arms, wrists, hands and even my genitals.
Back pain, with muscles spasms that make me lose my breath.
Neck pain with a grinding sensation when I turn my head.
Jaw pain/popping.
Vision changes including spots, or wavy lines not associated with migraines. I often feel like I am “floating” when this happens.
Slurred speech
Difficulty swallowing
Dizziness
Confusion
Memory loss (This is especially apparent to myself and those who know me).
Incontinence (It seems to just pop up when it wants to, then go away as quickly as it’s onset).
Bowel problems including an increase in urge or constipation.
Sleep disorders (i.e. Extreme difficulty falling asleep, or staying asleep).
Nerve twitching in various places, primarily my legs or face.
Tailbone pain (I have trouble sitting or even laying down on my back).
Chest pain
Palpatations
Rapid heartbeat or skipped beats
Rolling sensations in my chest
Shortness of breath
When I brought up the possiblity of MS, the doctor was not interested in hearing about it. She did respond with, let's do a 4 hour EEG and go from there. This has been going on for over a year now. (The seizure part). I have had 4 EEG's that show I am having an episode, a 24 hour EEG....and still can not get them to "figure things out". They stated that I did not have any activity suggesting "epilepsy". She is really making me question how nuts I really am, at this point. If I am not mistaking, there has got to be some kind of explanation. MS stood out as the most prevalent dx. Oh, I also want to add that I was on the borderline of being dx with Lupus, because of my immune system being overactive. I was one blood drop seperation from being diagnosed.
Frustrated in Texas,
Stacy
I also want to let you know that I am not one to go to the doctor when I feel the slightest ache, and I can't stand the effects that pain meds have on me, therefore I dont ask for them.
My symptoms include:
Seizures affecting my facial expression , neck muscles and eyes.
Severe leg pain (To the point some days I find it very difficult to even walk). Upper and lower legs. Primarily the lower leg, but I also have thigh pain.
Heat sensitivity (Hot baths, showers or sun exposure).
Knee pain (Some days the left knee will have terrible pain, the next it is my right. I often get buzzing sensations under my knee cap).
Numbness in several places of my body, especially my face (primarily the right side), my arms, wrists, hands and even my genitals.
Back pain, with muscles spasms that make me lose my breath.
Neck pain with a grinding sensation when I turn my head.
Jaw pain/popping.
Vision changes including spots, or wavy lines not associated with migraines. I often feel like I am “floating” when this happens.
Slurred speech
Difficulty swallowing
Dizziness
Confusion
Memory loss (This is especially apparent to myself and those who know me).
Incontinence (It seems to just pop up when it wants to, then go away as quickly as it’s onset).
Bowel problems including an increase in urge or constipation.
Sleep disorders (i.e. Extreme difficulty falling asleep, or staying asleep).
Nerve twitching in various places, primarily my legs or face.
Tailbone pain (I have trouble sitting or even laying down on my back).
Chest pain
Palpatations
Rapid heartbeat or skipped beats
Rolling sensations in my chest
Shortness of breath
When I brought up the possiblity of MS, the doctor was not interested in hearing about it. She did respond with, let's do a 4 hour EEG and go from there. This has been going on for over a year now. (The seizure part). I have had 4 EEG's that show I am having an episode, a 24 hour EEG....and still can not get them to "figure things out". They stated that I did not have any activity suggesting "epilepsy". She is really making me question how nuts I really am, at this point. If I am not mistaking, there has got to be some kind of explanation. MS stood out as the most prevalent dx. Oh, I also want to add that I was on the borderline of being dx with Lupus, because of my immune system being overactive. I was one blood drop seperation from being diagnosed.
Frustrated in Texas,
Stacy