Muscle tension/pain?

[[Sc...]]

Hello all and nice to meet everyone,

Just to share a little background on me, I was diagnosed with a rare RYR1 gene mutation (and Periodic Paralysis) in 2020 and have Malignant Hyperthermia. To help my intense muscle cramps from this, I was put on 5mg of Valium, it is the only medication that helps with this when I get paralyzed. However, my doctors want me to stop taking it, as it has given me anxiety, depression, flatlined emotions, and depersonalization. I lost a sense of who I am, have no emotions at all, and have been tapering. Every day I slowly am feeling more like my old self, getting more sleep and feeling more at ease. I am rather young if that makes a difference.

I went from 5mg to 2.5mg, and now am on my last couple weeks of 1mg before I stop taking it. As a side note I am also on Baclofen 20mg twice a day, which I have to take for the RYR1 gene mutation, and Dantrolene as needed. 

Since going down to 1mg, I have been experiencing muscle tightness, numbness in my toes and hands, and this weird muscle/nerve pain, especially on my ankles, and calves. My whole muscle system feels inflamed, but I am just riding it out. Is this normal to feel in the muscles? It is a feeling I have a hard time describing, like a tightness but not quite cramping. It makes me feel like I want to REALLY stretch my muscles or rip them out, sorry for the poor explanation, it is difficult to put into words. 

I am seeing a very experienced specialist for my condition (at NYU), but since it is so rare we are kind of winging it, and trying things to see what works. She has been trying to get me to taper off the Valium for over a year and I finally am almost done with the taper. I never took more than 5mg of Valium during the entire time I have been on it.

I eat fairly healthy, only drink water and coconut water, and exercise when I feel up to it, but lately, I cannot bring myself to do any as my muscles feel like they are constantly inflamed. I am 5'10" and 123 lbs. Lost all my muscle tone and hope it comes back

I do not have school or work right now so I can just relax, but I am looking for an explanation as to what this is, or if anyone can relate. I also have agoraphobia, which is unlike me as I usually love being around people. All of this I was told is from the Valium, so hopefully it goes away over time as I lessen up off it. Another way it affects me is the higher the dose, the worse I felt, and even got angry (VERY unlike me). Can't wait to be done with this stuff. The less I take, the better I feel.

Thank you for your help and for taking the time to read this  I apologize if this is confusing or poorly written, as I am tapering and all over the place, probably not making much sense.

[[PE...]]

No, age doesn't mean a thing in this.

It's very common with body pain in different shapes.. I didn't get any but had other things that made life miserable. 

Good thing you don't work or have school. Less external stress factors the better :))

Baclofen is also a gaba drug but works on gaba B instead of A like benzos does. Or if it was the other way around

5mg is a low dose and i hope/think you be better off than many of other members. 

just keep on you seems to got this 😊

 

 

[[Cr...]]

Hello @[Sc...], welcome to Benzo Buddies. Our names share a common link 

From what I have read, it seems as though the higher doses of Valium (in your case, 5mg) cause you unpleasant mental/emotional symptoms which subside as you get lower, but at the expense of an increase in physical symptoms.

The muscle tightness is common because since benzos also act as a muscle relaxer, the withdrawal effects are often the inverse. Whatever issues a benzo helps it often makes feel a lot worse in withdrawal.

The good news is that outside of the muscle issues/numbness you seem to feel better as you continue to get lower. Many others struggle as they get close to coming off as their symptoms usually get worse.

While these physical symptoms are unpleasant, they are not unusual and should get better after enough time has passed after your taper is done.