A 'newbie' question(s)...muscle pain/burn?

[Grammy80]

My leg muscles feel strange. It is a combination of weakness and burning, and then I just have to sit. I don't feel I can stand any longer. I was just Dx'd in September, but I'm pretty sure it has been with me for a while.

Is this the course of PD? Is this part of the package?

Would it help if I tried to exercise more? I could ride a recumbent bike; being uncomfortable isn't a great motivator, but I could press on and do it. I don't want to give in and make it worse faster.

I've also switched from being wide awake until 3 AM to being exhausted by 8:30 or 9:00 PM and wind up going to bed by 11:00 PM. Do the sleep and wakefulness keep adjusting my schedule? I'm such a 'newbie' to all this; I'm just listening to my body and your folks. I don't mind the unexpected as much as I do not know if it is PD.

Also, the last two nights, the medication I have taken for years has been getting stuck in my throat, and I've reached out to the doctor to prescribe dosing with smaller pills. Speech therapy is set up.

Thanks~! 💞

[park_bear]

If I am not careful medications get stuck in my esophagus on the way down. To avoid that I found the most important thing is to make sure they're thoroughly coated with saliva before swallowing. I also make sure to have something viscous like yogurt handy.

Being sleepy at bedtime is a great blessing for those of us with Parkinson's. I would take advantage of it and try to get to bed a bit earlier.

That is all I've got. Hopefully others will fill in some of the other details.

[Grammy80 in reply to park_bear]

Thanks park_bear. I take quite a variety of meds for other chronic issues which I am sure are making it easier for me to fall asleep. The one that is 'sticking' is a must have, but the 1000mg horse pill has no hard finish on it and gets sticky immediately. Yesterday after talking to pharmacist, neuro and insurance company, the lesser dosage (I'll just take 4) has the hard finish; I'll also enlist some yogurt! I'll take what you've got and thanks!💞

[MN1066]

Perhaps you could try a magnesium supplement such as magnesium glycinate, plus regular leg muscle stretching (Pilates exercises of the same muscles). I do these for the same problem and generally it works for me

[Grammy80 in reply to MN1066]

Thanks so much...💞

[Parkie1]

Morning Grammy. It was weakness in my legs ,& tightness ,burning pain in my left thigh which finally drove me to my GP for a diagnosis , although by that time I knew I had PD. Madopar takes those symptoms away, but when it wears off I'm back to finding it difficult to stand until my next dose. Interestingly, although standing is hard to do I find going for a walk is easier, and it helps to ease the pain a little. If the weather is bad I get on my stationary bike for 10 minutes . I think that just moving helps the pain. Strange old thing is Parkinson's!🤔

[Gallowglass in reply to Parkie1]

That walking is essential! Walk 30 minutes 3-4 times per week. Fast as possible. Also ask for a physical therapy referral to learn about ways to improve legs. Try magnesium lotion several times precast and night and CBD lotion as well

[Parkie1 in reply to Gallowglass]

Thanks Gallowglass. I'm waiting for PT appointment. Long waiting list,I think.

[Grammy80 in reply to Parkie1]

I can relate and will work on my bike for sure. I made note of the medication. My initial visit with the neurologist was 9/23 and I see her on 10/5 since starting meds. I've added Madopar to my list of possibilities for her but think it best if I don't introduce anything at this point. Thanks!💞

[Gallowglass]

there are some good PD exercise videos on YouTube that might help, but you still want a g to check your form and explain things.

[00Mark]

SHi

Carbidopa levodopa should help with your legs. I get similar burning combined with weakness in my legs when my medication levels are low in-between doses.

Definitely try to get as much exercise as you can. It should help with the general progression of the disease, as well as your leg problem.

Regarding sleep, it's something I struggle with. Getting a good night's sleep is important, so make the best of it! 😴💤

I wish you the best of luck.

[Grammy80 in reply to 00Mark]

Thanks, 00Mark I've got to pull those big girl pants on, suck it up, and do the bike. I've been unable to walk except in the house, better thanwhich is nothing, but I know it is not enough. I'm at an early stage with meds and hope to get an increase on November 5...I usually set my alarm for 6 am to take my meds...I'm also on a high dose, 60mg, of prednisone, which only contributes to the tremors. On Monday, I hope to start a safe taper of pred. I'm for sure not alone, and appreciate the response....💞

[DogsWoode]

In my humble understanding, there is no certain course of PD and no certainty of symptoms really . . . it's like whack a mole (are you familiar with that game?). Something strange creeps up that you've never had before, it's likely PD, and you do what you can to alleviate that and if lucky it goes away. Whack! and then another strange symptom comes up and you repeat. It is like a never ending house of mirrors. This is tongue in cheek I understand, and I do not mean to minimize anything, however I have to laugh sometimes because of the weirdness of the symptoms. That being said, like everyone tells you, any exercise will help. Also, laughing is the only thing that keeps me from crying at times. Best of luck to you. You've got this.

[00Mark in reply to DogsWoode]

Humour is our best antidote to this disease, I think!

[DogsWoode in reply to 00Mark]

I'm going to really work on that . . . positive attitude and humour and exercise . . . that's half the battle right there.

cheers!

[Grammy80 in reply to DogsWoode]

YES! 🦦 🔨 💥 💞

[Grammy80]

I've been a decent Whack-A-Mole player throughout my life....but it may be time to perfect my game. I guess I better just settle in for the ride. I will make more effort to exercise. I've been dealing with GCA since 2019 and feel I'll have to approach this in a similar way...."hang on, its going to be a bumpy ride." I do believe our mental attitude is a huge factor in the way we feel; the way we manage the moles. Thanks much!!💞

[DogsWoode in reply to Grammy80]

well done, you!! 💕

[PDKiwi]

Grammy, I had chronic pain for at least 10 years before DX. While magnesium and red light therapy helped, the real game changer was switching to a carnivore diet.

[Grammy80 in reply to PDKiwi]

I'm not familiar with the carnivore diet...but it just sounds the opposite of fruits, veggies, grains and nuts??? Mostly I have been hearing 'low protein'...I'm puzzled? Could I hear more?💞

[Susan80]

are you taking magnesium?? YOu may need some.

[Grammy80]

I think you are right too....since I just started meds, I think I will wait until I see the neuro on 11/5 because there are other suggestions I want to ask her about, i.e., for phlegm, and Vitamin B, and I have more questions on my list. Thanks💞