hi, my name is Amy

[Acorn1]

I have never posted on a board, but have had rrms for over 10 yrs. Slowly the fatigue and pain and leg spasticty have taken over my body. I have a really strong faith and always a positive attitude about my day. (Yay, I walked to my own kitchen and made coffee from my Keurig, wow I am blessed type attitude.)

I have never typed or even said these words outloud, but I am not sure if I am now at a SPMS level. I shuffle when I walk most of the time, fatigue is relentless and pain in legs and spine are almost too much to bare sometimes. I get up and can function (feed dogs, put clothes on, brush teeth, make coffee) for about an hour or two. I am then back in bed feeling like someone pulled my battery out. I pretty much live with heat pad on back and one across thighs. I currently take Copaxone. I know if my neuro changes me from RRMs to something else I cannot get the rx for this med.

I see people posting they do some form of exercise a lot. I don't. I feel like I cant. Am I not pushing hard enough? I use a wrist crutch when I go out, maybe to Vons. But I am leaning on cart and shuffling by the time I get to check out. (maybe 10 min.) But I smile at people and mean it, or let them go in front of me if they are challenged also.

About 8 years ago my husband looked at me and said (no joke) "you are not going to get better, you are just going to keep getting worse and worse". We live in separate houses now. We are friendly, but I don't let him or really anyone into my 'world of ms stuff'. Really, who wants to hear it?

My mom died about a year ago, from a nasty, long suffering disease. My dad passed away from ALS. I don't want my experience to be anything close to that, but I do know God's got me. I love them so, and they were never a burden, but I admit it was exhausting.

I just turned 50 something; I am not a person who shares much to the people I know. Everyone has their own 'stuff'. So I guess that's me.

[Seasha]

Hi Amy and welcome to MSWorld. We're glad you came to us and trusted us enough to share your story. And your story rings true for many of us. Putting on a genuine smile while dealing so much with our own stuff. I am the same, because I feel that everyone has their "stuff", like you mentioned, and ours happens to be MS.

About transitioning to SP - For me, my symptoms just got worse over time (balance, more spasticity in my legs, more fatigue and cognitive issues)- the transition from having flares (inflammatory stage) to not having them for years, but still progressing. Mine you, you can still have flares with SP, but it's not as common.

A visit with my Dr finally confirmed that yes, it was SP. We talked and with her blessings, I decided to go off my DMT (copaxone). It's so much an individual choice! You might want to visit your Dr. and voice your concerns about suspecting you've transitioned to SP.

My mom passed away almost 4 months ago, my dad 20 months ago, so I share in your loss.

Take care and thanks for sharing

[Brad1138]

Amy,
We all have our stories. Thank you for yours. You have the right attitude. Counting your blessings. That's what I do too.

[dastardly]

Hi Amy thanks for sharing I know it can be difficult to share our feelings, I don't know how you manage to keep a smile showing for others to see, me I am just so angry with myself all the time, I hate not being able to do the things I use to do, I cant use any tools or do many of the simple tasks I once could, I just hate the feeling of relying on family and I feel like I am bring them down, well thats the nature of this MS it effects more then the individual who has it Craig

[SNOOPY]

Hi Amy,

I think it's time for a serious discussion with your Neurologist.

Exercise is a very important aspect of this disease. From what you have written the most important exercise for you would be core strengthening. Our core body strength is needed to support the spine as well s other benefits. A Physical Therapist is a really good place to start for an evaluation and help in rebuilding your Core Body Strength. Many of the exercises can be done on your bed but it's important to make those exercises life long.

It is possible to see improvement through Physical Therapy although it takes time and commitment on your part. I am SP and still see benefits from exercise and working with a Physical Therapist.

Take care

[Leenyi]

Hi Amy,

I was really touched by your post. I am fifty something like you and have also been dealing with MS for too long.

I admire your strength. That being said I agree with Snoopy's suggestions about exercise. A few years back I was having terrible spasms in my back. It was horrible then I went for physical therapy. They taught me exercises that strengthen the core muscles. My back is much better now.

Another observation I think it is important to treat plasticity. I don't know if you are taking anything but I was taking high doses of oral baclofen. It helped some but it also left me very tired and confused. I now have a baclofen pump which works better on the spasticiy without the fatigue.

I hope some of our suggestions help. But more importantly Just remember we are here for you. We understand.

Ei

[Acorn1]

Just hearing other people, same stuff, same challenges.......this has helped my soul. I did call my neuro today; their office actually has a neurologist that specializes in MS. I think I will go see her.

I used to take the baclofen as well, and had more fatigue issues while on it. I have been 'vaping' medicinal cannibus for a while now; only at night before sleep. It has helped; I no longer take the baclofen or Tylenol 3. However the last month of pain (and I can handle some) seems to be all consuming.

I will look into core strenghthening excersises; I have been completely lax in being pro active on this. Thank you all, really.

[LisaL77]

Amy I feel like you have sung my song here. Know that we are with you. I had periods where I was sleeping all weekend to recover so I could resume work on Monday. I took a hard look at my existence and began to make small changes. It's taken over half a year to go off medications with bad side effects. I set small goals, like 'today I will vacuum'. I am learning to stop looking at everything I cannot do or get to, but to celebrate what I can do/have done.

Have you tried meditation? There are guided meditation on itunes, etc. I use Spotify, and found some great ones. Also, regarding spasticity, I could not live without my magnesium tablets. I take 500 mg at bedtime. When very bad, I climb into the tub with a cup or so of Epsom Salt. I do not currently exercise but I am going to start SLOWLY with stretching.

Your screen name says it all. Acorns are very small, but become very mighty.

[Cat Mom]

Really, who wants to hear it? .

We do. Come here for support, to vent, to cry, to celebrate (even small victories like making a coffee in the morning).

You said you're currently taking Copaxone. Have you been on other meds before Copax? There's a whole bunch of new ones out, I can't comment on them as I've been on Copax for 11 years.

Sorry I don't have any great advice for you, just wanted to make you feel like you're in a safe place, with many, many caring people, to talk about your "world of MS stuff".

Jen

[pennstater]

No advice that hasn't already been given. I just wanted to welcome you. Hope to see more from you.

[Mamabug]

I'm 55. Have had MS for 16 years. Our onset must have happened at a similar age. My MS specialist tells me I am now in the "gray area" between RRMS and SPMS.

I often find things in common with others who are here.

But, I am often struck by his dissimilar all of our stories are in some aspects. We have different symptoms, different rates of progession, different rates of ability, different support systems, different emotions, different approaches.

I've learned that I need to listen to my body. When it comes to exercise, I truly believe in it's value in delaying further progression. But I only do what I can. I don't push myself to exhaustion.

What you say about "stuff" is so true. I say that frequently. "Everybody has their stuff."

[Carlyle]

Hi and welcome!Theirs good people on here helping each other out.Dave

[Mamabug]

Regarding exercise

Seasha gave good advice about a physical therapist.

Also, if you ate reluctant to consider adding exercise to your weekly routine, drop in to The Wellness Forum. You'll find our Exercise Check-in thread in the Stickies. Just browse our posts. Or feel free to comment.

If you feel ready, set your own manageable goal about how you will move your body this week. It could be vacuuming or other housework. It could be your PT exercises. If you wear a pedometer or activity tracker, you could count steps. It could be walking two blocks a day, etc.

Whatever you decide.

Just come read some if our threads and consider joining us.