Is this normal to still feel bad

[chelsea1186]

I am curious if there is anyone out there that feels like I do or can at least help me in understanding what is normal and what is MS. I was diagnosed May of 2011 and pretty much never felt the same ever since my first exacerbation I haven't felt normal again. I feel so exhausted and i am in some pain. I have cognitive issues as well. I guess I just thought that after I was treated for my first one that I would go back to normal. Does that mean that it is getting worse? I recently seen my dr and she didnt seemed to worry about any of this. I am on Aderal however you spell that. I have pain in my legs so I am on Tizanindne. I am also on Copaxone. I find it hard to explain to my family sometimes because I feel like I disappointment them because I am not feeling better. Is it that normal to not feel good since being diagnosed?

[Tinkerbell65]

Chelsea- you could almost be describing me to a "T". Diagnosed in May, same types of symptoms including the cognitive ones. Looking back, i recognize that I'd been experiencing symptoms for a while, but just attributed them to age. Denial is great

Anyhow, don't feel like you're alone. I have similar symptoms day to day- they never really go away, but are rarely horrible either- except for the cognitive stuff- I already can't work because of that. I have just made up my mind that this is my new normal (although I hate that saying) and go about my day. As I go, I'm learning more and more about what I can/can't do, but even more about how to best manage my energy level. I also feel like it's an ongoing ebb and flow of emotion and just allow myself to feel whatever it is I'm feeling.

Please don't feel like a disappointment- I'm sure nothing is further from the truth. Your worth as a person doesn't come from what you do, it comes from who you are. You can always come here for support, encouragement, or just to vent. We're with you all the way!!

If you haven't already done so, I'd encourage you to seek out a therapist- even if you don't feel like you need one now it's still a good idea to be proactive- there will probably come a time when you will need someone (you already know how overwhelming this can be) and it can be hard to confide in someone when you're in crisis if you don't have some kind of relationship already.

Take care. Sending hugs-
Theresa

[Lexie]

Chelsea, MS is such a hard disease to explain. I vary from week to week. I had my first big flare last October and have not been the same since. I am much better but still am exhausted most of the time. I have the best husband of 42 years and even he does not understand even though he is very patient with me. He still wants me to go to the gym and thinks that will help me. I guess it would but I don't have the energy nor the time to go to the gym, After working 8 hours a day I'm done. Luckily I can go home and do nothing because my kids are grown.

I have had issues with "trust" with friends at work because they do not have a clue how much effort I am putting in just to try to be civil. It's a bad deal, but something I have to learn to deal with. I can retire in June of 2013 and count every hour. Hope I will do better when not having to work! Stay in touch! If it were not for these boards I would think I was losing my mind!!!

[chelsea1186]

Thank you all so much I feel better knowing its not just me. Im so glad you mentioned the emotions I feel like mine are so out of wack haha.. Have either of you developed a I dont care it whatever attitude lol I notice that I am becoming more like that. I am just noticing the things that arent worth the effort I guess

[valeriem2220]

I also haven't come back to 100% after my last major flare in March of 2011. Not that I was 100% before...lol
I have noticed the memory and cog issues for about 5 years now and have spoken to my mother many times about alzheimers setting in, I was very scared as I had a great aunt that had it. When I got my MS diagnosis I told my Mom one of the bright sides was that it is NOT alzheimers...
I also have something different happening to my body it seems every single day. It is a little frustrating waking up and wondering before I even crawl out of bed, what part of my body will work or not work today, or what odd sensation I will be feeling today.

I also have found that I have acquired a new "I don't care" attitude. I have done this though out of the need to keep myself healthy, or as healthy as I can. I do notice that if I get stressed, I get very sick. The last time, a few weeks ago, I got extremely stressed out at work and my legs went numb for 2 days and I was exhausted and could do nothing for those 2 days either. Nothing is worth getting sick over.

[Tinkerbell65]

Maybe instead of looking at it as an "I don't care" attitude I think we should go with "re-priorizing". The most important thing on any given day comes first- the rest is just icing on the cake - and there are plenty of times cleaning the house doesn't make the cut.

[jumpinjiminy]

Icing? That's what the dust on my stereo looks like. You could cut it with a knife. LOL

[Thinkimjob]

You probably don't feel better because now you know you've got MS, and you're a bit depressed on top of recovering from the flare.

You're feeling every possible MS symptom at the moment, if you're anything like I was. Everything you might have ignored once is now a sign.

Your family must realize Copaxone is not a cure. They're no doubt feeling depressed, too.

It will, I hope, get better.

[Lexie]

I have deninately "re-priorized" things in my life! But I think you do that as you get older too. My family has always been the center of my life and still are but I miss not being able to do all I used to do. But ~~~~ I can still walk, I can still talk, and I can still imagine! I have lost a lot of my creativity and that makes me sad. I still have the vision of things I want to do but can't organize everything like I used to do. A lot of things are not as important to me as they have been in the past! It's still hard! Together we can help each other out!

[MS Diva]

Maybe this link will help family to understand what you may be feeling: http://www.howdoesmsfeel.com/how.html

[rdmc]

Is it that normal to not feel good since being diagnosed?

Here's the tough thing about MS...there is no "normal" in regards to everyone, in fact your own normal may constantly change.

I hate the feeling crummy part. Early on, during a flare I'd have it, think it was here to stay, and then one day I'd wake up and feel almost normal. How long that lasted was anybody's guess. It's just such a darned unpredictable disease. I do think the longer you have the disease the more you deal with the crummy feeling (which I imagine is fatigue) on a more regular basis.

Copaxone won't make you "feel better"...but symptomatic meds (which is sounds like you're on) can relieve some of the symptoms. But here's the thing to remember about meds, sometimes our feeling off, is in fact due to the very meds we're using to relieve symptoms, or due to the DMD.

I take Beta, so I know that makes me feel a little yuck the morning after...I don't think that happens with Copaxone, but I see you're taking Tizanidine. It can wipe you out and make you drowsy/fuzzy. Unfortunately, we need the meds to function, and sometimes have to deal with the side effects too.

Don't give up hope that you'll feel better at some point, and try to adapt to your new "normal" in the meantime. And don't feel guilty, it's not like you chose to have the disease or have any control over it's course.

[Lexie]

I found a quote on "Pinterest" which is very near to my MS heart. "One of the hardest things in life is knowing which bridge to cross and which bridge to burn." I am at this point with my coworkers! Think I will burn them all and retire this June instead of next June. I have that option!!!Which is more important the extra money or my health and sanity?

[Cat Mom]

Isn't it deceiving that they call it Relapsing Remitting... waiting a long time for the Remitting part, while experiencing all kinds of sx, is not abnormal at all. Maybe try explaining it to your family like this... The illness is always there, it's the sx that come and go (or stay, yuck) but MS is always there. It's not like a cold or flu that actually goes away.

Hope you get to the point where your sx are "stable" very soon. I'm not saying that they will totally disappear in between flares but you will get used to living with the ones that hang around (living with them as opposed to simply existing with them). It may take a bit of time and I hope you are able to get to this point soon.

Jen