I had my GP’s “Clinical Pharmacist” phone me today. He is very concerned that they get me taking the right dose of this Ropinirole Parkinson’s drug. I’m to take 3 a day on week 1, then 6 a day on week 2 & then 9 a day on week 3. Then increasing the dose from there if I am able to tolerate the drug. Sounds a lot of fun doesn’t it?
I would say that what troubles me most about my Atypical Parkinson’s is the [extreme] fatigue I feel. I have had to give up golf completely & have taken up indoor bowls. I had my first one hour lesson on Saturday & it left me physically shattered. I also have swollen feet & a numb left leg that makes walking strange.
Now two of the possible side effects of taking Ropinirole, which I haven’t taken yet,
are swollen feet & fatigue. Of course they are.
So how will these pills help my most worrying symptoms ? What is Ropinirole supposed to do for me?
I listened to a 1 hour lecture on Fatigue & Tiredness in Parkinson’s on Youtube. The conclusion was that if you have fatigue & are tired, it might be down to Parkinson’s or it might be something else !!! That’s an hour of my life I will never get back.
I’ve been really knackered all day & am sitting on my bed as I type.
Oh well there are many others worse off than me.
I hope my ramblings are of interest to some.
Best wishes
Steve2
Regarding the “an hour of my life I’ll never get back again,” get in the queue, been there, done that. Have so many T shirts I could start a small boutique.
I do know the problem regarding the fatigue is, simply because PD our muscles now have to work much harder to achieve the same result.
And yes there are many others worse off than us, but many better off, so, I just hassle about myself and occasionally, for a minute of two, explain very succinctly to the ether what I think of the way my rugby/soccer/etc team is playing, then all is good again.
B-)
Have a stunning day.
Sleeping is a very common thing I believe. My husband (74) sleeps for 12-13 hrs through the night and at least 3 x naps throughout the day ; he is not interested in doing anything really - which is quite annoying - and very demanding of my time.
Took my first Ropinirole pill for Parkinson’s 5 hours ago. Was watching TV & came over really tired. So I lay on my bed & fell into the deepest of sleeps. I have extreme fatigue but struggle to sleep. I was amazed that I got such a strong reaction to my first pill.
A little worrying that I will be increasing this dose to 9 pills a day within 2 weeks.
I also have a very slight headache.
If anyone is interested I will publish my reactions to the Ropinirole pill going forward.
I would add the “fatigue” I have impacts greatly on the quality of my life.
Well another 4 days medication without any mishap & I think my legs feel better.
Although, whether I’m just having a good day or a positive reaction to the medication
I will never know. How is a 69 year old supposed to feel?
Yes it was just a good day as my feet & legs feel at their worst ever today. I am due to see my Neurologist tomorrow with my 3 months follow up & have a few questions lined up for him.
I have been taking Requip, (ropinerol), in fairly large doses since early 2009, so nearly 15 years, starting at a low dosage and building up over a number of weeks to around 16mg per day.
I did not suffer from faitigue, slept quite well, and hardly ever fell asleep during the day, for quite a number of year’s really , compared to some , but a house move ,late in 2013 led to difficulty in walking( i had to buy a walker which i use daily even now ) followed by a visit to the Consultant early in 2014 When he increased the dosage of Ropinerol to 20mg a day, and added Madopar to the mix!
I am currently taking 24 Mg of Requip XL ( slow release ) as well as 550 Mg of Madopar during the day and 100 Madopar CR ( slow release) at night.
I now occasionally suffer from fatigue, and i can almost guarantee that five minutes after my favourite program ( the one I have especially been wanting to see ) comes on the TV, I will be fast asleep !
Whilst driving, I do not present any Parkinson’s symptoms, so fatigue/ tiredness
( thankfully ) do not apply , but after a journey, and sat at home - sleep comes quickly .
I am fairly recently diagnosed, PD being confirmed last August. Since then I have been on Madopar which mostly seems ok. I am approaching 59 years old. I work for Tesco and one of my main jobs has been trolley collecting in the car part which is very physical. Recently this has started making me feel wiped out and terribly fatigued, especially when it is hot. I do not know how much more of this I can take and have mostly continued the trolley collecting job because I know exercise is good for me and the condition. But the fatigue I have been experiencing recently has been off the scale. I don’t know how much of this is simply due to my age or how much might be PD related. Is physical fatigue and exhaustion a thing with Parkinsons? No one else remotely as old as me does the trolley collecting role and it wipes me out vastly more than sitting on a checkout does. And much more than it did even a year ago.
Good morning srb7677 … It is 8 months since my original post here. I have been taken off Ropinirole & put on Sinemet. I take 2 pills 3 times a day. I have also been diagnosed with Neuropathy. I take 2 pills a day of Amitriptyline for this. My feet were swollen & my leg muscles incredibly tight & my legs felt heavy.
Mobility is my issue & I struggle to walk more than 100 yards. I no longer walk for pleasure, just out of necessity for trips to the chemist etc.
My fatigue is very much part of my life & I just have to put up with it.
srb … I would certainly speak to your medical team & tell them about your issues. Another drug might be better for you. I would also ask whether you have Neuropathy like me. 55% of people with Parkinson’s have this delightful add on.
Maybe ask Tesco’s if you can go back on the tills.
I am 78 years young ( it’s only a number) and was diagnosed with PD in 2009, some 15 years + ago, so I have lived with it for some time !
Over this period, symptoms have appeared unexpectedly, and symptoms have disappeared just as unexpectedly, but fatigue seems to have stayed a constant ?
Thankfully I am aware of it happening, and very importantly’ when it is likely to happen, and now’ take a break ‘ asap before it hits !
It’s not the same for everyone, of course, and I am certainly no expert on modern employment rules etc., but at one time I had 150 staff working for me, and I would hope that every one of them came to me when they needed assistance and I’m sure that your management would be accommodating, if they know your position?
My employer tends to be very supportive and I have agreed an action plan by which I spend no more than two hours a day collecting trolleys. They would exempt me from collecting trolleys entirely if I requested that but I am aware that physical exercise is good for my condition too, so want to still do some of it for as long as I am able. Apart from the increase in fatigue, and of course those damned tremors, PD is barely affecting me yet. I was however only diagnosed last year so probably have some way to go.
I dont think I have neuropathy just yet. As a type 2 diabetic I have long been alert to signs of problems in my extremities, particularly toes and feet, and there is as yet no sign of any issues. Neuropathy can be a thing for diabetics too but I have not been experiencing any early symptoms. No foot or finger damage, no swelling, no numbness. Everything seems fine in that department so far but I remain vigilant.
Good morning srb7677 … If ever I was to write a book I think it might be on fatigue. Fatigue is screwing up my life. I am 70, I am 6 feet tall, I weigh 13 stone, I eat correctly, I don’t drink, I don’t smoke & I have been a keen sportsman all my life, into my mid 60’s. I have always enjoyed long walks & played sport to a high level. Now
I struggle to walk 100 yards.
A few questions for you … Do you exercise? Do you eat correctly?
Do you drink / smoke? Is your weight where it should be? Do you sleep well ?
The other things for you to mull over is whether Parkinson’s is your only ailment & are you on the correct medication?
I had thought that my only ailments were Atypical Parkinson’s & Neuropathy. But yesterday I had ultra sound done on my heart following on from an Atrial Fibrillation episode in October 2023. So I was told yesterday that all my heart valves leak. Faulty heart valves mean your heart isn’t working efficiently, so it has to work harder, which you guessed it brings on fatigue.
I rely on work for my exercise which is why I do not want to give up pushing trolleys completely until I have to. I do not always eat as well as I should and I do drink alcohol but only occasionally. I gave up smoking 20 years ago. I do have another condition, namely type 2 diabetes. I am rather overweight but I am nevertheless gradually losing weight due to my appetite not always being what it was so I tend to eat more sensibly now in terms of quantity.
Good afternoon srb7677 … I have just completed a 6 week Neurological Physiotherapy course. One hour a week in a hospital gym with a physiotherapist who specialises in Parkinson’s. You ask your GP to refer you. It is free & I found it excellent. So I would strongly suggest you give this a go. It is not just exercise it is lifestyle as well. Also looking into the future if/when your Parkinson’s get worse this will help you.
As your pretend medical adviser I can see that, as you put it, “I am rather overweight” as the probable reason you are feeling fatigued. As well as your Parkinson’s & your Diabetes.
The NHS provides the following diet advice for people with diabetes:
Eat plenty of starchy carbohydrates with a low glycemic index (low GI)
Increase the amount of fibre in your diet.
Eat plenty of fruit and vegetables – at least 5 portions per day.
Cut down on fat and saturated fat in particular.
You also say " I do not always eat as well as I should " … So does that mean Pizza, burgers & fry-ups ?
If you want to live a longer & healthier life you do need to eat as you should.
Lecture over.
Only you can get your body back in shape. Let this be a wake up call.
Buy yourself a weighing machine & a blood pressure monitor.
I eat takeaways only very rarely not least due to cost. As far as unhealthy eating goes I usually finish work late into the evening and rarely get home before 9pm, usually tired and lack the energy to cook much so I end up having a ready meal. I eat better on my days off.
I have contacted my parkinsons nurse to arrange to see her to discuss these issues.
Thanks for your advice though, which comment I mean sincerely
Hi = apologies for the length of delay in replying but I have also had to deal with the illness and recent death of my mother - which is still ongoing. My husband has had PD for approx 6/7 years now. He is driving me mad - doesn’t want to do anything, go anywhere, all he wants to do is sleep - and MOAN…
I have started to notice days when I am being far more easily wiped out by fatigue. This is variable. Some days I am still capable of doing hard physical labour for an hour or so which is my agreed maximum in work for hard physical graft. But I get days and this is the case increasingly often where just ten minutes of hard physical graft wipes me out. I also get serious mood swings which are more likely to be negative ones when fatigued. Fortunately my employer is very supportive.
But I am only 59 and thus 8 years away from a state pension. I had hoped to be able to work until then but steadily worsening symptoms is making this seem unlikely. As well as fatigue and increased mental difficulties, my hands, particularly my left hand is much slower at performing tasks and I struggle more than I did with tin openers.
My employer - Tesco - is very supportive and will limit me to manning a checkout on my request, but I am aware of the likely future progression. At the moment my speech is mostly unaffected but I cannot expect that to last, and communicating with customers is a major part of the job. Should I also be incapable of doing something more physical, there will be no real roles left for me in the workplace.
Yet I seriously worry about being thrown at the mercy of the DWP. At it’s worse the fatigue can be pretty debilitating already.
No hassle at all.
I’m so sorry to hear about your mother.
Regarding your husband, I have the perfect solution, let him lie in bed or on the coach sleeping and you go out with friends to restaurants, movies, live shows etc.
The best part of that is you won’t hear him MOAN.
Oh and if you do, I’m sure you could find a good pair of earplugs, or of course, noise cancelling earphones, and having jazz/classical/blues/rock/ basically anything that will stop you hearing him moaning.
