Introducing myself and seeking help and hope—anti-fatigue medication

[Saveme]

Hi everyone,

My name is Emily, and I have been reading posts here for awhile now, and wanting very much to post, but I was afraid—every time I started to introduce myself I would end up pouring out my heart, and I would get embarrassed.

So I promised myself I would try to brief and not too emotional.

I am 39 years old and I was diagnosed with relapsing remitting MS almost 8 years ago. I am married and I have a five year old daughter and up until this year I worked full time. I have never been symptom free since my first relapse, but for the most part the symptoms were liveable (even though if you’d asked me at the time I would have complained like crazy).

But things were going well enough so that I expected to get a promotion at work that would have made my job secure, and I had hoped then to go part-time so I could have another baby (my husband and I have always wanted two kids).

About 4 years ago I started having increased fatigue and cognitive problems, and I began to fall behind at home and at work. My then-neurologist put me on Ritalin, 5 mg twice a day, and then after a year 10 mg twice a day. It was like a miracle—I was able to catch up and then some.

I have had a few relapses, and one severe one in Fall 2011. I experienced the MS hug for the first time, and I began to have bladder and bowel problems, and I began to use a cane and then a wheelchair. It turned out I had a spinal cord lesion at C5. I was very lucky, and I recovered from the relapse, and with rest and PT I was able to walk on my own again after 4 months, and I got back on the 10 mg twice a day of Ritalin and continued at my former pace.

The story gets complicated here. I changed neurologists and treatments (from Betaseron to Tysabri)) after my Fall 2011 relapse, and Tysabri did not work out well for me, unfortunately. I was on it for six months and I got an infection every month, and I ended up hospitalized with a staph infection. When I got out of the hospital my neurologist took me off Tysbabri and I went back to work right away, but the 10 mg of Ritalin twice a day was no longer enough.

My neurologist then raised it to the maximum, 60 a day, in September 2012, and I was able to work, but I was jittery and I started having trouble sleeping at night and all my symptoms worsened. By February 2013 even with the high dose of Ritalin I was just too tired and in too much pain and too confused to keep working.

I switched neurologists again and my new neurologist put me on medical leave and on a break from Ritalin. I also began seeing a therapist and started an anti-depressant because for the first time since I was diagnosed with MS I found myself having a sense of hopelessness—if I can’t return to work in August I will lose my job.

I am 39 (it happened so fast!) and my husband and I are facing the fact that we probably won’t be able to have another child. The anti-depressant and my therapist have helped me so much—even though I feel fear and sadness it doesn’t possess me any more, and I am able to take joy in my sweet family and friends and my cat and the health I have.

So obviously I have lots of issues, and I am sorry for that long history. But it all leads up to this problem:

I am still plagued by fatigue. I know all of us are, and I feel silly complaining. But every single day I get hit with it, and about half the time it is so severe I have trouble even understanding how to complete an action. I will need to pick up my daughter from kindergarten, for example, and I will start to get ready but I will end up just going from room to room and I won’t be able to remember where I put her juice box or where I just put my keys or I will head out the door and realize I’ve forgotten my purse (if I have the juice box and keys).

My eyes start to droop and my vision starts to blur and I am worried about driving. This is just one example, but it is debilitating, and scary, and I am always calculating if I can manage to do something like go grocery shopping because what if it hits me while I am there?

I went back to my neurologist and told him about this, and he put me back on Ritalin, now at 40 a day, but it does not work any more. I went back again and asked if there was anything else, and he said that if I had trouble with fatigue Ritalin nothing was as strong as Ritalin.

So what I wanted to ask all of you is: Is this true? I keep thinking there may be something else out there for me, something, but I am stymied. I have another appointment with ANOTHER neurologist on June 3, but I wanted to go in this time with information from people with MS who can understand.

Can you help? Do any of you take medication for fatigue that you can recommend? Have any of you experienced a poop-out from an anti-fatigue medication and changed to another and have it work? I don’t expect to ever be fatigue-free, but I want so much to function better than I do, for my daughter and husband and maybe in the hopes of returning to my job.

Please let me know if you have any advice for me. I will be very grateful. And thank you so much for being there and for listening.

Emily (So sorry this is long. This is brief for me! My original one was 4 pages!).

And should I move this to the treatments category? I don't want to confuse anyone by mixing up protocol).

Thank you again, and I am looking so forward to meeting you all and talking with you--if I can stay awake long enough.

hello Emily I have MS as well had it over 20 years, I lost my sweet baby to MS, it was indeed hard on me, still is to this day. My name is Ramona. sorry for this being so short I am in pain.

[tmarq23]

Hi Emily and everyone =)
Has anyone found anything for the fatigue? I have complained about fatigue for years and doctors used to dismiss it as I just overwork myself. I was diagnosed in July and suddenly so many things made sense to me.
My Neurologist put me on Amantidene and I have yet noticed any difference and it's been almost a month. I still can not stand to keep my eyes open or concentrate at work.
I've also tried herbal supplements without success.

[ismenet]

Naps too

I tried most all from adderall provigil ritalin and i liked Amantadine the best the rest got me through lawschool but i felt like a junky and the low hit me hard

the fatigue is the worst black tea helped me too


good luck!

[Rinella]

Hello Emily,

How are you? Your story is really inspiring. Your courage is undeniable. Right now, I don't know other drugs that might help with the fatigue. But if I heard of something, I'll post it here.

Just don't give up. And writing how you feel through this forums can help lessen the depression.

[Hogan181]

Hi I'm Jane,
I'm one of the old timers, dxd in 1988. I know now that I had MS symptoms during both prenancies. In 1981, the entire left side of my face went numb. In 1984, my left hip would buckle sometimes when walking. Between pregnancies; no symptoms at all.
Until 1988, shortly after returning to work part-time, planning a fiftieth anniversary party for my parents, and just general additional stressors in my life. This time around, I developed the foot drop of my left leg. Since that time it has been a very slow progressive disease which put me in a chair in 1996, and a power chair in '02, due to losing use of my left hand.
I am not currently on any meds specific to MS, except for antidepressants that were started about 5 years after dx. I completely understand severe fatique; frequently I fall asleep in front of the computer, and have actually fallen asleep on the toilet twice!
My neurologist has tried me on Ritalin as well as Adderall but neither did much to combat the fatigue. I have mostly figured out on my own to pace myself and to let go of relatively unimportant stuff. More than anything, that seems to have improved things with regard to the fatique.
As I became more resigned to dealing with my MS I quickly learned about compassion and helpfullness of strangers. Initially, when someone would offer to help lighten my load in some task, (carrying a heavy load of groceries, or picking something up from the floor) I would decline the offer. I guess I thought I needed to prove (to someone, me?) that I was still capable of being independent. I later realized that by refusing the offer,
#1. People feel embarrassed for offering
#2. I didn't need to prove anything to anyone anyway
#3. It makes people feel good about themselves that they could help you out.
#4. Why turn down an offer that can help you conserve your limited energy for more important things!
I hope to be able to "meet" more of you in the future as we exchange our stories. Its a comfort to know that someone understands what you're talking about and that you're not alone, isn't it?
Jane

[bwmorris]

Hello Emily,

How are you?

Hi Rinella. I don't want to speak for Emily74, but she's been having a rough time.

Here's her thread that explains it:

http://www.msworld.org/forum/showthread.php?t=128650

Emily74, I really hope life starts looking up more for you soon. I've been really worried for you throughout your recent ordeal(s). Really worried.

Hi I'm Jane,
I'm one of the old timers, dxd in 1988.[…]
As I became more resigned to dealing with my MS I quickly learned about compassion and helpfullness of strangers. Initially, when someone would offer to help lighten my load in some task, (carrying a heavy load of groceries, or picking something up from the floor) I would decline the offer. I guess I thought I needed to prove (to someone, me?) that I was still capable of being independent. I later realized that by refusing the offer,
#1. People feel embarrassed for offering
#2. I didn't need to prove anything to anyone anyway
#3. It makes people feel good about themselves that they could help you out.
#4. Why turn down an offer that can help you conserve your limited energy for more important things!

Hi Jane/Hogan181. I like your reasoning. This is one of those things—accepting help from others—that seems to be a really big initial hurdle for a lot of us, myself included.

[koniwithak]

fatigue

Hi Emily
I have tried Provigil, Nuvigil, Ritalin and now I am on Adderall. It is hard trying to find the right dosage times, but I do not feel the shakes, or have the all nighters that taking Provigil and Nuvigil can bring on after a few day, at least for me.

I have heard Adderall XR is really good, but my insurance won't cover it. I like this much, much better than ritalin. However if I have over done it, NOTHING helps and I sleep, a day or so ...it is hard, this fatigue, and I pray you will find the perfect med to help. Blessings

[Seajay6]

New to this party in Portland,Maine

Hello all,

I was diagnosed in December 2012. Prior to diagnosis, I had three months of puzzling symptoms before I was hospitalized. The neurologist did two MRIs and a spinal tap. He told me "it looks like you have MS" and I was sent home with a mega-dose of steroids. A week later I was told that I was doing so much better and given prescriptions for an anti-depressant and anti-anxiety medications along with instructions for 6 weeks of physical therapy. There were no explanations. No idea of what expectations I might have. No discussion of therapies that might be of help. No talk about symptoms and how to manage them. No resources given. In short, I was scared, alone and uninformed.

At age 56, I had just begun a new, very sought after position only one month before. I lost my job due to medical reasons with no healthcare insurance or benefits. It took nearly 6 months before I felt at least somewhat better; the symptoms have improved but have never gone away. Now I know they probably never will.

I read all I could. I sent emails. I scoured the internet. I joined message boards. I began acupuncture every week, chiropractic every month, change in diet, addition of supplements, exercise, psychotherapy. I found a new MS specialist. I put together what I called my "Wellness Team".

Fatigue was a constant. Not normal fatigue, but MS fatigue. No one except someone who has had it can understand. I tried Provigil and Amantadine. I couldn't tolerate either. The fatigue has lessened over time somewhat. I had a very hard time this summer - I am extremely heat intolerant.

I began Tecfidera July 23. After some difficulties, I am now tolerating it well and not having as much trouble. My energy has increased.

I hope that the message boards will be of help

Seajay6
Portland, Maine

[lilcupcake62]

Hi Emily
My name is Dawn and I am 51. I really don't know how long I've had MS cause it took the docs so long to dx me. But I'd been having problems since 1997. Have you ever had your B-12 checked? Mine bottomed out 2 times which made me want to sleep almost constantly.

When I first started having my problems before I got my dx I had so many different symptoms. I was on the B-12 shot for several years until my body started absorbing it naturally again. And now I take the pill form in a very high dose. I also take lots of other herbs and vitamins that seem to help me a lot. I only take 3 MS meds. Copaxone, Tramadol for my pain, and Topiramate for my headaches and it also works for my jerking movements. I was also told that Tumeric Curcumin which is a herb in pill form also works for fatique. I have only been using it for a few weeks so I'm not sure if its working yet or not. But I use as many natural things as possible.

I think I hate the pain worse than anything else. My neuro messed up on my pain pills recently and gave me time released and didn't tell me and even the pharmacist didn't catch it. I could have OD'ed on them but luckily I only got sick to my stomach and really tired for 3 days before I figured it out. But it was the first time since I have had MS that I didn't hurt at all. So now my reg doc wants to send me to a pain management clinic. I am waiting for them to call me with the date.

Believe it or not but working out also helps with the fatique. I joined the gym last year but have had to quit cause I can't get a ride during the winter and its a waste of my money when I can't go. I don't drive cause I have optic neuritis. And don't have my drivers license anymore.

Well I hope some of this has helped you.