[coachmomlu]

I'm not sure how to explain this, not quite pain but definitely discomfort happening in my arms and legs. Feels a lot like muscle fatigue one gets after working out, but I haven't worked out. Is this, or does it sound like, PD related? Last few days I've noticed a strange sensation in my left leg at bedtime. somewhat like it wants to cramp, but doesn't. I'm on a low dose of Mirapex for RLS. Next appt with the neuro is in June. any thoughts? Thanks!

[pegleg]

If you were on Sinemet (carbidop/levodopa) I would speculate that your pain is dystonia caused by long-term use of the medication. What you describe is the same pain that I get, except I often experience writhing pain, usually located in my upper arm (it feels llike it is an aching boone and strained surrounding muscles). I have never been on an agonist alone, because 16 years ago when I was first diagnosed, they added the agonist as adjunct theraoy later into the disease to help smooth out the on/off problems.

However, each individual is unique in the symptoms experienced. And pain is listed as one side effect of Mirapex (*** www.rxlist.com - search for Mirapex).

So these are my thoughts as to what is going on, but there are probably a zillion other possibilities. Best to you!
Peggy

[coachmomlu]

Originally Posted by pegleg

If you were on Sinemet (carbidop/levodopa) I would speculate that your pain is dystonia caused by long-term use of the medication. What you describe is the same pain that I get, except I often experience writhing pain, usually located in my upper arm (it feels llike it is an aching boone and strained surrounding muscles). I have never been on an agonist alone, because 16 years ago when I was first diagnosed, they added the agonist as adjunct theraoy later into the disease to help smooth out the on/off problems.

However, each individual is unique in the symptoms experienced. And pain is listed as one side effect of Mirapex (*** www.rxlist.com - search for Mirapex).

So these are my thoughts as to what is going on, but there are probably a zillion other possibilities. Best to you!
Peggy

Peggy, thanks for your feedback. I'm checking out the side effects again. I didn't remember that being one, and that may explain it!

[pegleg]

You're welcome!
Peg

Originally Posted by coachmomlu

Peggy, thanks for your feedback. I'm checking out the side effects again. I didn't remember that being one, and that may explain it!

[girija]

peggy,
I experience similar pain in arms and legs these days, something new to deal with. I have been on Mirapex for 5 years, I wonder why now.......I will ask my neurologist ....

Girija

[pegleg]

Ii believe our bodies build up immunities that fight (or lose) against these "toxins" we put into our bodies. Yes, I called an agonist a toxin. I am of the opinion that ANY kind of foreign chemical introduced into our system turns toxic after taking it for a while. It's a theroy that I have been meaning to give more time to research.

You know, peoplelpast 65-70 cannot tolerate dopamine agonists like the younger patient. They experience halllucinations and weird paranoia, etc. There's got to be some connection in that somewhere that could help us with better treatments.

I dont' mean to get on my soapbox, but I'm ready for some new and novel treatments for PD.

[Conductor71]

Originally Posted by pegleg

Ii believe our bodies build up immunities that fight (or lose) against these "toxins" we put into our bodies. Yes, I called an agonist a toxin. I am of the opinion that ANY kind of foreign chemical introduced into our system turns toxic after taking it for a while. It's a theroy that I have been meaning to give more time to research.

I dont' mean to get on my soapbox, but I'm ready for some new and novel treatments for PD.

Just wanted to add that I experienced severe aches in my knuckles, in the arches of my feet, and in my toes of all things- it is not a dystonic pain though. Some was directly linked to my use of Mirapex...the finger pain disappeared after I stopped and started Requip. The finger pain was a deep ache like I would imagine arthritis would feel, and the foot pain was more sharp and intense; it happened when I first got of out of bed in the morning. My arches felt like they were old creaky hinges badly in need of oil, and I think this is more PD rigidity as I still have it but not as bad or frequent.

That is another frustrating part of the treatment, with med side effects we don't know what is PD and what isn't! Also, it seems logical that the rigidity we have in muscle tone with PD in the first place might be exacerbated by some of the side effects. Does that make sense?

Peggy, you are so right. I feel these drugs are toxic the most when I realize how my extremities suffer the most--it's like there is such a buildup and it's accumulating in my system down to my fingers and my toes! My body is saying enough- let it all out, please! I won't even let myself think of the fact I have to take pills likely for the rest of my life...it used to drive me to the edge when I realized that I would have to start every day with a pill. Sigh.

Laura

[pegleg]

Laura said " I won't even let myself think of the fact I have to take pills likely for the rest of my life...it used to drive me to the edge when I realized that I would have to start every day with a pill. Sigh. "

I'm afraid if we (ALL of the PWP's) don't stomp oour foot down and say WE DESERVE BETTER!" then we have no choice for anything beyond the infamous dopamine replacement (or stimulators or enzymatic boosters).

Think about this - we have been letting the medical profession get by with writing an Rx for levodopa and saying "Enjoy your life for the next 20-30 years." That is totally, unequivocally unacceptable! Nobody wants to take on an illness that involves permeating the blood brain barrier, or alters mood, personality, and doesn't have a positive diagnostic test, let alone an etiology!

Oh, shucks! I promised I wouldn't get into this, but I swear - I am thankful we are living longer than people diagnosed with PD did 40 years ago, but with dyskinesia, depression, aches and pains, dystonia, constipation, bladder retention or incontinence (shall I go on with all the side effects?), why are we still saying that's the gold standard?

Until we can find another Michael J. Fox, or Andy Grove - influential people willing to stand up and fight the "accepted treatment of choice" then we are forced to be tied to a medicine bottle or face the consequences - no movement or a poor quality of life. (BIG SIGH!)

So what do we do? (Another BIG sigh)
Peg

[coachmomlu]

Originally Posted by Conductor71

Just wanted to add that I experienced severe aches in my knuckles, in the arches of my feet, and in my toes of all things- it is not a dystonic pain though. Some was directly linked to my use of Mirapex...the finger pain disappeared after I stopped and started Requip. The finger pain was a deep ache like I would imagine arthritis would feel, and the foot pain was more sharp and intense; it happened when I first got of out of bed in the morning. My arches felt like they were old creaky hinges badly in need of oil, and I think this is more PD rigidity as I still have it but not as bad or frequent.

That is another frustrating part of the treatment, with med side effects we don't know what is PD and what isn't! Also, it seems logical that the rigidity we have in muscle tone with PD in the first place might be exacerbated by some of the side effects. Does that make sense?

Peggy, you are so right. I feel these drugs are toxic the most when I realize how my extremities suffer the most--it's like there is such a buildup and it's accumulating in my system down to my fingers and my toes! My body is saying enough- let it all out, please! I won't even let myself think of the fact I have to take pills likely for the rest of my life...it used to drive me to the edge when I realized that I would have to start every day with a pill. Sigh.

Laura

Laura, I'm not sure what dystonic pain feels like. Is it like the pain when you get feet and leg cramps, or like the deep ache from fibromyalgia?

I'm only on 0.25 of Mirapex daily, so it doesn't seem like enough of a dose and for such a short period of time (about 6 weeks), but then I've never been on it before.

I'm headed to the ophthalmologist next week, as it appears I've developed Bletharospasm. Like the rest of you, I'm not excited about the prospects of pills or treatments the rest of my life. But for now, I'm just trying to take the best care of myself possible.

Blessings all!
Cindy

[Conductor71]

Originally Posted by coachmomlu

Laura, I'm not sure what dystonic pain feels like. Is it like the pain when you get feet and leg cramps, or like the deep ache from fibromyalgia?

I'm only on 0.25 of Mirapex daily, so it doesn't seem like enough of a dose and for such a short period of time (about 6 weeks), but then I've never been on it before.

I'm headed to the ophthalmologist next week, as it appears I've developed Bletharospasm. Like the rest of you, I'm not excited about the prospects of pills or treatments the rest of my life. But for now, I'm just trying to take the best care of myself possible.

Blessings all!
Cindy

Cindy,

You are correct in the dystonia description. It is more like muscle spasms or cramping than deep joint or muscle ache. If you are only taking a total .025 Mirapex each day, then that is likely not it (I was on .025 three times daily).

You may want to ask your doctor regardless...this is from the www.drugs.com site:

In very rare cases, Mirapex can cause muscle wasting. If you develop muscle aches or soreness after you start Mirapex, be sure to tell your doctor.

Sorry, this may not at all be what is going on with you, but wanted you to be aware. The agonists in particular come along with nasty side effects and wearing off effects for some of us. Not at all sure how Mirapex works to control RLS...though it seems that the side effects are pretty consistent.

Hope you find something that helps!

Laura