Fatigue and "numbness testing"!!! Vent

[Jifr]

I am so angry I want to cry!

WHY is it nearly impossible to get people to understand that MS fatigue is NOT like being tired!  

I had my neuro appointment yesterday (3 month Gilenya appointment)...and I'm telling her that the fatigue is literally CRUSHING.  It's mind numbing. It's MISERABLE almost to the degree of being painful because it is just so oppressive and...she's NODDING like a bobble head and frowning.  Like I'm speaking gibberish because she doesn't know why I'm having such crushing fatigue.  Like she doesn't BELIEVE that it is as miserable as I'm telling her and that I shouldn't be having such mind numbing fatigue.

I DON'T KNOW WHY - but I do. I want to say, "Please please please listen to me!"

::breathe::

She recommended we check my vitamin D levels since they've never checked it before.

She recommended Zoloft, Adderal or Ritalin.  (Provigil gives me massive headaches now.)

::breathe::

We're going to go with the Ritalin and see how that works but...I'm still angry.  The fatigue is just as real as all of the other crap I deal with.  I feel like it gets minimized because there is no "test" for it.

Speaking of tests - is it just me - or does everyone else absolutely LOVE and do backflips over the "I'm going to stick you with a safety pin and see if you can feel it" test?!

(Insert my own private scream here.)

I have photographs of the last time they wanted to test my "sensitivity".  Photos of red scratches that turned into SCARS.  I gently mentioned this to my NP and she said. "I'll be gentle".  (Okay - insert mad woman laughter here).  Gentle?  I CAN'T FEEL IT to start with!  What part of "gentle" is supposed to console me?

She said they had to do it to prove the T-spine lesion. (insert "are you kidding me" look here).  We KNOW I have T-spine lesions.  How is scratching me and sticking me with a PIN going to "prove" what I'm telling you?

Is it just me?!

I was furious this morning.  I think I've only ever cried over MS twice in 10 years of diagnosis and I felt like it this morning.  ::sigh::  This is my first vent post ever so - I guess that's saying something.

Thanks for "listening".

Jen.

[summerluvr]

I know this fatigue feeling, but for me I would describe it more like I feel like I have the flu constantly (weak, tired, achy,) or that I'm walking around with a constant hangover (my sister's description of pregnancy fatigure) - not so much as I'm tired all the time. I think it's important to distingush it. In my case it is well known about fatigue and blood cancer, my hospital even hands out pamphlets about how to deal with it.  The one talks about your "energy bank" and about how you need to break stuff down and use "credits" but not over due it, and then rest the rest of the day etc.  

[anon07072023]

That is really low. I'm not sure if 2000iu is going to pull that up to where it needs to be. I was borderline (I think about 30) and I had already been taking 1000iu a day. They had me change to 3000iu a day, and it only went up to I think 33 or 34 for my next check on it.

Happy New Year back to you!

[Jifr]

Vitamin d levels are in. According to their scale. I'm a 13. Normal range starts at  30. (according to their scale... And I hear there is ambiguity in testing ranges).

Anyway - she wants me to take 2000iu of vitamin d. I hope it helps the fatigue.

Thanks for the kind words everyone. Please know that you are appreciated.

Happy new year!

[debgen]

Oh Jen, I totally feel your frustration. I just woke up from my daily 2 hour nap. Fatigue was on of the main reasons for going on disability, and of course with my mobility problems. You are so right that people don't understand that MS fatigue is so much more intense a all consuming than just being tired. It's really pathetic that your near doesn't understand this or know anything about the meeds used to combat fatigue. If it is at all possible, I would try and find a new near (who won't ***** you !)
Hugs to you!
XXXXXXX
Deb

[SarahL2491]

I haven't had any luck getting anyone to approve Provigil yet.....but have not tried in 3-4 years.......they keep saying its for narcolepsy not MS....
sigh

as if they would know

[anon07072023]

I'm taking Amantadine right now for my fatigue. I was just talking to my partner about it the other day, telling her that I think I'm going to let my new neuro know that it doesn't really work.

I think I'm going to go off of it. I might either try going without a med for a little bit to see where I'm at or I might try Provigil if I get approved to take it with my insurance company.

-Kelly

[sadie405]

I have had decent luck with Aderall--- 30 mg in the AM and then 20 in the afternoon when things really start to drag.  It has by no means wiped out the fatigue but it has given me a few hours to get some stuff done. Again-- nothing terribly ambitious, but now I can change the laundry, you know?

For some reason I have never had any luck with provigil.

You described the "crushing" sensation that is MS fatigue so beautifully in your frustration! Glad you vented-- hope it got some of the poison out.

Best,
Sadie

[meg321]

Well, ranting is a good thing..we share the good and the bad on here.  It helps us equally as well.

That is so ridiculous...Fatigue is one of the biggies when it comes to MS.  I am sitting here trying to get enough energy to do something, anything !!

keep ranting !!!

meg

[Jifr]

Hi guys...Thank you so much for your kind words of support.  

As I'm sitting here at work, I'm wondering how on earth am I going to get home.  I am so tired.

:-/

Maybe something will come out in the Vitamin D test.  Maybe they'll find something else that they can "fix" with medicines.  ::shrug::  I don't know.

I can hope, though.

[KarenNadine]

Aw Jen,

Reading your post made me feel so sad for you and also angry.

I am in limbo-land still and sometimes feel like I dont have the "right" to comment on some of these posts but I just wanted to reach out with a cyber-hug and say that you should vent as much as you want.  We are all here to support.

I agree with LuLu 100% about saying no to the pin!  It has been done and there is no way you should be dealing with that again.

Hope you have a better day.

All the best,
Karen
x

[Buffy1970]

It is no consolation, but I understand your fatigue, and I feel your pain where it comes to doctors not understanding fatigue.  

I have actually fallen asleep while doing things - not narcolepsy, just beyond exhaution.  Has this ever happened to you?  If so make a list of these events for next apt.  It may help get/focus their attention better.

Don't give up!  
(I love to see the support you have above!)

[SarahL2491]

Amen Lulu

[Lulu54]

Jen, first do no harm is the oath all doctors take and even if you can't feel it, they are doing harm to you if they are leaving scars from your tests. My neuro hasn't pulled that pin out since my first visit.  What arethey trying to prove? There are plenty of other tests that can be done that don't leave you permanently scarred.

Next time they pull out that pin, just look them firmly in the eye and tell them what you have told us and regfuse for them to do it again.

If the doc you see doesn't understand MS fatigue then it is time for you to move on to one who does.  It is the most common complaint with MS and can be treated, but only if you havea doctor who understands fatigue.

The way you were treated makes me want to cry, too. Please pass the tissues.
Lulu

[SarahL2491]

I'm going out on a limb here and the next visit, am learning to say "no".
No more pin pricks, no more nothing that's already been done before.
But then I do have a good neuro, finally.  Kissed enough toads to win a good one.

We are here for you, vent any time, we always learn something from each other!

[candy158]

I so absolutely understand what you are saying.  As the others said " are you sure our Neuro's aren't related"  .... I have to have a glass of wine and a super, duper vent after I see ine, so, I get what you are saying.  The pin test is to stupid, and so are the other ones, but we have to go with what the heck they tell us to do.

I so get the fact that they don't listen either, and what they say to oyou, and then what they put in their report are so totally different, I have wonder if they were talking about me.

LOL,
Hang in there, and know we are here for the venting, it is so inportant to do,

(((HUGS)))
Candy

[anon07072023]

I hear you.  When mine started to get a lot worse, it just felt like I was so wiped out all the time and like I would be able to continue to work.  My stupid neuro at the time never even told me there were any prescription drugs for MS fatigue.

I had initially told him back in July of last year that I had a lot of fatigue.  Then I started reading posts on here about people who were taking meds for their fatigue. I was like, "What?!" Why didn't my neuro ever tell me about them???  So, I called him 8 or 9 months after the first time I discussed my fatigue with him and asked him to prescribe a med for my fatigue.  Hello - shouldn't HE be the one to tell me about what's out there?  Like your neuro, he just ignored what I had said.

Hang in there,
Kelly  

[supermum_ms]

WOW!!!

I read this, then had to read it again and the only thing thats going around my head is 'are you kidding me' I dont think this right at all, you are not supose to get scared, i've never ever heard of that one before and we do get to hear of some dosey's around here.

If your on a trial? - make a complaint!

Is this neuro the only one you can see? - If its not please request another and explain why.

the other thought is to be warry of any dr that makes you feel unheard or worse than before you set foot in their office. Their job is to help you not hurt you and if thats not whats happening then you need to protect your self, do not give away anything your not willing to give up. You have the right to refuse, do not ever forget that its your body, your life and you are the driver of this pony ride, dont give that away, ever!

HUGS..........JJ

[SarahL2491]

oh Jen, you need a hug..........u sure your neuro isn't related to my old one! LOL
they should only have to experience it, then would sing a different song....

hugs to you, breathe, take the day off from stuff.........