Extreme Exhaustion!!!!!!!!

Hello...I am new to this forum (actually never tried any forum before),  and I have so many questions and so much to say but I will start with what has been most bothersome recently which is exhaustion!!!!!!  I have a husband and 2 kids (11 years and 6 years old) and lately I am tired to the point of not being able to get out of bed!  For example this past Wednesday night I slept 19 hours straight!!!!  

I am prescribed Ritalin (10 mg twice in the am,  and once in the afternoon) and I have found that it is the ONLY thing that has made a significant or positive change in my health/mood/behavior.  Of course this is awesome but my problem is that the mg that I am currently prescribed is a little less then half of what I really need!  I have been trying to see my neurologist so that she can raise the mg but it is almost a year long waiting list.  I've tried having my script switched over to a family doctor so that he can adjust the mg accordingly but he has been having a tough time getting in contact with my neuro,  therefore holding up my prescription further!

I am wondering if anyone else has any experience with Ritalin prescribed for their exhaustion??  If so,  what is a "normal" prescribed amount??  I also want to know why I am having such a hard time getting these doctors to understand me!  I feel as though I am having a nervous breakdown because I am so desperate to feel "normal" and I don't know what to do!!!!  Continuing to suffer on the days that I am without medication feels like torture and I am having such a hard time understanding why I am not prescribed the dosage that I find necessary???  Does anyone have any insight or advice on how to handle this situation as I am hoping for a positive outcome soon so that I can stop the ongoing suffering????  

I thank you in advance,  and I am looking forward to any insightful response's from this community!

[doublevision1]

Sorry, I don't have any experience with anti-fatigue meds.  The only advice I can offer is to strongly consider getting new physicians.  No MS patient who already has a neuro should have to wait that long to be seen.  Clearly yours is overcommitted and you need one that will see you in a reasonable timeframe as needed.  As for your family physician, the should be able to speak to your neuro with one phone call (don't know if that's their issue or our neuro's) , though regardless, they should have the skills and the confidence to treat your symptoms without needing your neuro's involvement, especially since your neuro is so unavailable.  My GP has never had a problem prescribing and adjusting my meds to treat my symptoms and my neuro as no problem with this.  The two have never  even spoken.  This s the best advice I can offer.  We must deal with our MS for the duration of our lives, which hopefully will be a long time.  We need doctors who we can count on.

[doublevision1]

Sorry, I don't have any experience with anti-fatigue meds.  The only advice I can offer is to strongly consider getting new physicians.  No MS patient who already has a neuro should have to wait that long to be seen.  Clearly yours is overcommitted and you need one that will see you in a reasonable timeframe as needed.  As for your family physician, the should be able to speak to your neuro with one phone call (don't know if that's their issue or our neuro's) , though regardless, they should have the skills and the confidence to treat your symptoms without needing your neuro's involvement, especially since your neuro is so unavailable.  My GP has never had a problem prescribing and adjusting my meds to treat my symptoms and my neuro as no problem with this.  The two have never  even spoken.  This s the best advice I can offer.  We must deal with our MS for the duration of our lives, which hopefully will be a long time.  We need doctors who we can count on.

[supermum_ms]

Hi and welcome, personally i dont take Retalin but i did a quick google search and '100mg twice a day' kept coming up for chronic fatigue. So if you are on a total of 30mg daily it may actually be too low, but any increase would need to be through your dr, not sure why you can't get this from your general dr though.

I really think you need to consider changing your neuro if he/she is too hard to contact. As for the drug, a few things you probably need to keep in mind. People who dont have ADHD have the opposite affect as those that do, in ADHD it helps slow them down, their thoughts enough to concentrate, impulsivity and destractability etc, but for those with out ADHD its basically legalised speed. It speeds them up, it is addictive, and regardless of if you've got ADHD or not, it does loose its effect over time and requires the occational increases in dosage the longer they are on it.

Its possible those are the reasons behind the low dose but regardless of the why, you really do need to speak to your dr about long term solutions.

Sorry I couldn't be of more help!

Cheers.......JJ  

[Gio77Italy]

if Ritalin isn't helping your exhaustion maybe it is not the right therapy, not a psychogenic problem.

try using Steroids maybe it can help

[JaneK1975]

I don't have any experience with anti-fatigue meds either, although I know that some here do. I definitely agree with doublevision and JJ that you need help and it is not right that your neuro is so unavailable. If you're diagnosed with a neurological disease or disorder, you need an available neuro over the long run.

As doublevision pointed out, you should be able to get some help from your primary doc. You may have to state directly that you can no longer wait and want him to do something before talking to the neuro. 19 hours sounds like a sign of a very severe problem to me. When you talk to your family doc, be sure to quantify how much you're sleeping. Include your average hours per night and the 19 hour night you experienced. How are you feeling during your waking hours? Are you able to function normally when you are awake? I'm so sorry you're dealing with this and I hope you find resolution soon.

Best wishes,
Jane

[Lulu54]

Welcome.  The MS fatigue I know about, I explain like this - if I'm  on the couch and the house is burning down around me, I would probably have trouble getting off the couch and out the door.   That sure sounds to me like what you are describing.

Ritalin and other ADD/hyperactivity drugs work well for many people, but it takes a while to find the right dosage. There is also nuvigil and provigil that can help, but it is extremely difficult to get insurance in the US to allow its off label use for MS.  Provigil is now available in generic form, so that might get better.

Steroids will give a temporary burst of energy - sometimes bordering on the extreme forms - but should not be considered for prolonged use.  There are many side effects with steroids and solumedrol is the usual form given for MS relapses.  You can see the lengthy list of side effects at

http://www.drugs.com/sfx/solu-medrol-side-effects.html

Even if you can't get an appointment with your neurologist, you should be able to communicate with the doctor through the nurses or ask for an appointment with the nurse.  You should not have to wait to see someone for medical help, especially since you are diagnosed.  Please call again, explain what your situation is, and ask how they are going to help you.  

good luck and welcome again,
Lulu

[Midijane]

Hi Mandella77,
Yes I use Ritalin 20mg in the morning and 10mg in the mid afternoon for my fatigue, and yes I love it. I have said for years it is the only thing that keeps me from going back to bed every day. I also agree it makes you feel better when you're more productive, so it does help my moods also.
Marell

[Mandella77]

Thank you all for your advice. I have an amazing neurologist at a highly ranked hospital who specializes in MS and has an outstanding bedside manner,  that being said...I do need someone (perhaps in addition) who I can count on so that I am not feeling so helpless.  I took one last step and I sent my neuro an email this evening explaining the situation. I hope that I receive a response and can move on from this.

I have tried both Provigil and Nuvigil and found some relief from them however it does not compare to the overall change in attitude, energy, and quality of life that I experience from taking Ritalin!  It has done wonders for me!  I feel extremely grateful to have found something that works so well for me and I will continue to recommend it to anyone who feels exhausted or in a mental "fog".

I want to say thank you to 'doublevision1'....your comment about having this disease for the rest of our lives and needing an understanding doctor really hit home with me. I think sometimes I forget or perhaps am in denial that this is something that I will be dealing with the rest of my life,  having an empathetic doctor should be a no brainer...it's one part of this disease that I can actually control!   Thanks

[Lulu54]

The other tool we have to help with exhaustion and fatigue can be exercise.  What you are describing sounds like a little bit of everything.  It is proven that even a small amount of exercise can boost our energy level and especially improve our emotional state.  This doesn't have to start out as some crazy intense gym routine - simple walks around the block with your children can be a good way to start.  

Good for you that you have chosen to be proactive with your neurologist - that is so important rather than sitting by possibly waiting for someone to call you.  If you don't get a reply in a day, be sure to follow up with a phone call.

good luck and keep us posted,
Lulu

[Mandella77]

Thanks Lulu!!  I do agree that exercise is beneficial in helping with fatigue. My problem is that without the Ritalin that I'm prescribed I can barely get out of bed and get dressed so I definitely don't have it in me to exercise!  With the medication I am able to either take short walks with my kids (and our new puppy),  or I can use my elliptical for 20-30 minutes!  They both provide me with a short term energy boost, which is good because I will take any energy that I can get (especially if it's natural and not in pill form)!

I also wanted to say that I FINALLY heard back from my neuro (I feel like I should be throwing confetti or something)!!!!!!!  Sending her a direct email was what finally worked,  however I didn't necessarily get the response that I wanted.  She is actually going to LOWER the currently prescribed mg of Ritalin and also change it to the extended release form.  I am willing to try almost anything,  and I want to remain positive that it will help me but it doesn't make sense to lower the dosage on a medication that I have found success in,  especially when I was asking for an increase in mg!  Now if this doesn't work I feel like I will be back to square 1 (and with an impossible to reach doctor)!

I have been taking into consideration a comment made the other day by doublevision1..... thanks :)..... This disease isn't just going away and I not only need but deserve a doctor I can count on (we all do)!!!!   Something about that just clicked and I have already started setting up appointments with 3 different/new doctors,  and I am going to see as many as I have to until I find one (for each specialist) that listens to me and cares. I just hope it doesn't take too long!  

Thanks again!

[hammermangard]

you need a referral from special psychiatrist that deals with that ....after that you're sweet.........i was the first to be diagnosed with everything in that whole  group over 31yrs ago in NZ,....you need that referral 1st .....GP and Neurologist wont help you!