Sick and Tired of Being in PAIN

[IcyPinkLemonade]

So I am gonna try to post this in this forum too to see if I can get any more help/suggestions.

I am currently being diagnosed with PLS. I have been clumbsy for many years, lots of broken bones, I currently have tilted ankles (too many sprains, the ligaments are loose) and am wearing two ankle braces (I almost wrote braclets, I would rather they be jewlery than needed to walk...). Long story kinda short, I fell down the stairs at work one day because I was getting accustomed to my braces. Caused lots of back pain. Went to physical therapy where they cracked my back, that helped for a while. Then it got worse. Then my arms started going numb/feeling heavy. Thats when I went to a back doctor. Did an MRI saw I had a bulging disc in my neck. Said that was causing the problems. Put me on traction where they pull your neck, thatg helped a little for my back and arms, nothing for my legs. Then I started getting pain in my lower back. I was then asked by my back doctor if I had muscle spasams. I told him I did, I just thought they were normal. Turns out its NOT normal for your leg to freak out when you are just lying in bed. Sent me to neurologist. Did all the same bending, poking, reflexy kind of tests. Said I had PLS. I am going thru all the testing to eliminate everything else cuz sadly not everything can be diagnosed with a blood test.

Ok, so that was all back story. Here comes the good stuff.

I have recently been prescribed baclofen. I take 15mg every two hours (its normally prescribed in 4 hr incriments but it only works for me in 2, doc knows). I take 30mg before bed. This helps out with all the pain in my upper back, my arms. I don't really have any spasms unless I forget to take it on time but...

I am having now SIGNIFIGANT PAIN in my lower back whenever I want to do something, such as walk more than around the office. I went to Salem, MA the other with my friends and couldn't enjoy it becausre I had to bend over every few mins to try to stretch my back out and it just felt like I had a charlie horse times TEN around the small of my back of my back.

The baclofen isn't touching this pain and I need something that will. I do NOT wanna start taking narcotics, I am only 24 and if I am gonna have this for the rest of forever, I do not want to start down that road. Has anyone used any other medications or something that will help? I do not want to stop doing things because I am sick, I am not ready for that yet. PLEASE help me!

I have also looked at Quinine but it looks like it has a bunch of side effects (like eyesight and I think something of the heart) and its not FDA approved for cramps. I have heard of botox but haven't really done too much research on this yet. I don't know how keen I am of injections in my lower back around my spine...

ANY suggestions? PLEASE!

 

[Tokahfang]

Compared to an able bodied person, we have a bad gig, those of us in PLS land. We get our own forum here where we can vent and rage and weep about our day. I am very thankful to the board administrators for giving us that space, and the PALS for not pointing out how comparatively spoiled we are.

ALS is much worse. The PALS here face tougher situations, ridiculously hard choices. The caretakers in our community face a daily grind of work and grief with no vacation time.

Our communities are tied, and the community here as a whole is beautiful. That is achieved in part by respecting other's spaces. The forum walls means that what we all share, we can banter about. But if a caregiver needs to complain about how difficult they find their loved one to be, they have a space where that can be healthily vented, and it isn't perceived as throwing down a gauntlet. Anyone can read that forum, but it has a primary audience, and there is a silent honoring of that audience in what is posted there. It would be inappropriate to post something that could be perceived as a criticism in the very sanctum where they are looking for much needed support.

Your post was very stridently toned, and I am sure it reflects distress. But on the MND general forum, where so many of the readers are seriously disabled, it sounds terribly whiney. The caps are unnecessary, and with the ability to walk, talk, eat, grip, etc they seem particularly out of place. Please respect the PALS here in your tone. PLS leaves most pretty healthy for a long time, it is a disease of decades. ALS is not so kind.

 

[alex scared]

as usual beky . -Perfectly worded . . . Alex