I'm sure that most are like me, in that you do not feel like going through all of these post's just to find what you are feeling. Here lately I have started to feel exhausted, dead tired, always wanting to sleep/nap. My 2 days off from work are mostly sleep. Granted I work 2nd shift and about 50 hours a week. But I just don't have the energy that I once had. Even 3 months ago felt more life in me than now. Friday I go to see my primary PD doc.
Dead Tired: I'm sure that most are like... - Parkinson's Movement
If it's any consolation, my husband is retired and is still tired all the time. He generally sleeps all night and will fall asleep in his chair while watching TV. He has given up trying to read the paper.as he falls asleep with it in his hands.
I know that. I have knodded off while on puter. And it is getting worse. I have had this dance card for about 8 years.
I read each post and I feel the same way. Exhausted and pains in my xyphoid area that
won't quit and my legs hurt much of the time. Sometimes I wonder if this is Parkinson's.
It get depressing and discouraging. I have lost 50 pounds since since I found out from
Mayo that I have Parkinson's.
Thanks for your post and those who made a comment. It was helpful to me.
Somewhere there is a positive or bright side. I have read and besides tired, toes turn in, leggs or left legg gets tight (can not walk), eye sight is getting bad, sleep in 2 maybe 3hr intervals, loss of weight, went from 240 to 218 and holding.Just some of the side affects. Hate being in public but force myself. It is better too face the neg. of public.But maybe we all cna find common ground and relief in here and in our selfs.
I just wonder if there is a tad of depression in all those symptoms, because depression can make you so tired and sleepy, but on being in bed find you can't sleep.
Eventually it becomes a vicious circle where you cannot or are unable to work out where the basic problem lies i.e. blame it all on the PD
I realise this has much to do with it all, but when you see your Doc next Friday mention it, you never know he might sort something out.
Wish you all the best.
Most likely the meds and depression combined. Depression lies so often unnoticed just below the surface of your awareness and can cause you to be sleepy, listless and unmotivated as well as cause you to experience high levels of muscular/joint pain. I too cannot sleep but in short two hour intervals, I experience restless legs symptoms during the night that drive me crazy. I massage, I take hot foot baths, I "bitch", I also experience feelings that my skin is crawling with bugs, I constantly itch. All this for a chance at a precious few hours of sleep. During the day, I often doze off. And, for many of us PD'ers these symptoms are just our nighttime dilema. During the day there are so many more to deal with. It is so frustrating, but you MUST be positive, as active as your condition permits - push yourself - smile (even when you want to scream) and talk, talk, talk to your doctor and your supportive ffriends and family. Take care
Pleass let us know what happenes. And depression is a good answer, it goes hand in hand with PD and can sap your strength and enrgy so fast. But there is help.
I was just thinking about this lately, when I was first, finally dx with PD my dreams at night woke me up. The were horific, rhe ground I was on Or rooms that I were in were spinning wildl, I couln't stand or walk, with events going on thar rerrifing. After getting on meds things got better,quite dreaming and started to sleep better, to the point for the last 7 or 8 months I've slept through the night very well. Now all of a sudden I wake every couple of hours, have a lot of pain, restless leg, sleep terrible, but now I also have "normal" dreams. I've taken ambien for sleep for a long time, go to sleep quickly, but wake a couple hours later, and it's on and of from there. Maybe time for some med change, see neuro tomorrow. Always something new.
Was it 7 years since you were actually diagnosed? Which means you had it much longer. As is the story with most PD patients. And still working 50 hours a week? Wow! That's a lot! I would like to say keep it up, but talk to your Neuro on Friday about how much you are working. Get his opinion if that's a good thing for you to keep that busy? Do you fall asleep at work? See if he/she thinks it's time to cut back or go on disability? We all are in different situations and all our Neuro's have different opinions, but hopefully your doctor knows you well enough to help you with the correct solution! Depression, change in medications maybe or working too much? I TRY to look at PD as a roller coaster ride! Some days your on top of the world and other days you feel like your falling off! Talk with your Doc!
50 hours a week! wow that's a lot. I used to work 35 maybe 40 then another 10 as housewife, mom . I would ask doc about diet, exercise, and vitamins. It was a boost to me before i retired (at 67 with PD) to take yoga at lunch time. Cut yourself some slack and give yourself a big hand. i do!
I suffered from sleepless nights for about a year. I didn't think I was depressed but I guess I was. I was prescribed Paxil and now sleep all night except for those annoying potty breaks. I occasionally take Clonazpam before bed because neck pain will keep me from getting comfortable enough to get to sleep. Also, Azilect was just added to my drug regime by my Neuro. Since Azilect and antidepressants aren't recommended my Neuro monitored me for any drug interaction for several weeks; none observed. However, had there been a reaction I would have given up the Azilect before the Paxil that's how much better I feel since I started taking Paxil. I rarely have panic or anxiety attacks anymore either.
I am constantly amazed at the differences in symptoms among PD patients. ..I have great difficulty moving out of bed after a night's sleep until I take first dose of meds...then better for a few hours...I do have episodes of shortness of breath, inability to walk, headache.....going to see neurologist this a.m. and hoping he will have some ideas that will help....I was diagnosed 12 ywears ago...but at least was able to take my dream trip before it became too hard to travel. Ten days in London and surrounding area....wonderful!
Has anyone read or heard about insertion of dopamine pump into small intestine? not yet approved in US. sounds kind of promising.
Glial derived neurotrophic factor - GDNF - is being used in experimental trials in USA now. Delivered via pump. The drug coaxes dying dopamine nerve cells back into production. In UK trial patients reported dramatic improvement in movement and coordination. If interested you might be able to get on a trial.
Any trials going on in UK?
I know of no current clinical trials but it is on the horizon. Research is ongoing. Strategies for delivery is diverse. Direct brain delivery is effective. Open label tests with small patient groups in UK might lead to controlled clinical trials in a limited number of PD patients.
The tiredness/exhaustion is really kicking my butt. By the end of the day, I'm really done in. My neuro actually put me on Adderal to keep me awake during the day. I'd like to say that it is doing the job, but I will still hit a point where I feel as if the plug has been pulled. When I get home, I sleep for a few hours only because I can't stay awake. I do wake up throughout the night. Damned if you do and damned if you don't.
Communicate all of this with your doctor and go from there.
Yes, you might be depressed, but you might also be anemic or other. Anemia can be very depleting. Some PD medications irritate the lining of the GI tract which in turn leads to blood loss thus anemia. It happens.
Many PD patients are quality sleep deprived. Catching up on sleep on weekends is not enough. Sleep is so important for over all well being. Definitely speak with your doctor about options regarding sleep.
Work can be sustaining. The sense of value that work provides can be uplifting. But ... if 50 hours per week of work is too fatiguing for you, be honest with yourself and make an assessment, then shorter hours need to be considered.
There is common ground here. Support here. This is a safe communication zone with compassionate members. You are not alone Clint. Lean on PM as needed.
Be well. Carry on strong.
Talking to your PD neurologist is #1.
I too was bothered by fatigue ...There is an old post entitled "Fatigue and Parkinson's" , dated July 12 of this year.
Go to the main page and click on "Blogs"....at the bottom of the page you will see past page numbers that go from #1 - 113. I believe the post is on page #16.
It is very informative and you may print it out, if you like.
hi i know dat feeling wrecked all the time doc says its d meds i dont know wat 2 do im so fed up of it all only dx in feb
My job does not afford me the option of lesser hours. And with a freeze in hireing, less employee's, more hour's for management.My job is in a c-store. So that means no slowing down till I head home. Which can be a "BIG" challenge at 2am. Doc and I covered depression about a year ago. As for disability, after friday I am going to contact all 4 of the doc's that I see for whatever and get on a heavy letter writing campaign and take on SSI here in KS head on.