My first forum

Hi, My name is Alan. I was diagnosed with PD in December 2018 at the Leicester General Hospital. My initial medication was Sinemet. After 2-3 months I had to discontinue them as they gave me continual headaches. Subsequently I was prescribed Madapar which had the same effect after a similar time. Both of these meds were reduced gradually and eventually my GP advised not to take any meds at all.
Result! This works ie no headaches, I can tolerate hand tremors but have many days of extreme fatigue.
In the current Covid situation there has been no contact or appointments from my Parkinsons Clinic (understandably).
Just interested if any like minded people experience extreme fatigue/ lack of energy, as my very understanding wife and I dearly love our countryside walks which for the reasons above are very limited.
Any comments appreciated.

Hello @Woody9 and a warm welcome to our forum.

A lot of people with Parkinson’s tell us that fatigue is a big issue for them so I am sure some of our helpful members will be along soon to say hello and share their experiences with you

In the meantime we do have some information on fatigue on our website

https://www.parkinsons.org.uk/information-and-support/fatigue

I hope you find it helpful.

Please do feel free to continue using the forum as a source of information and support and do keep in touch and let us know how you are getting on.

Take care

Corinne
Forum moderation team

Hi woody i tried sinemet to no avail now on co careldopa unbranded no headaches like sinemet i too have tremor meds no good gradually coming off have spoken with parkinsons team tremor is annoying really but i use to my advantage woody ask your gp for unbranded co careldopa

I experienced extreme fatigue when I was in the early stages of PD. I’d say I have less now, three years on, although I get terrible insomnia which sometimes makes me tired during the day. Unlike you, however, I am taking medication and could not manage without.

Hi Alan, my husband diagnosed a few months ago, not on meds as he wanted to try and wait as long as possible before he had to take them. He is having extreme fatigue, which is getting him down as he is so active so this may now change, he may start the meds if they help with fatigue …by reading alot on the forum, fatigue seems to be a big symptom of PD.

Hello @Alan where you from? Welcome!

Hello @Woody9,
I was diagnosed with pd a year ago and take madopar 3 times daily. To start with I didn’t feel particularly tired but I now suffer from fatigue. For an active person who still pursues an outdoors job at the age of 60 I find this very frustrating. It is worst first thing in the morning and I find it an ordeal to get going. As long as I keep active throughout the day I can keep going but as soon as I relax the fatigue comes over me. I guess the moral of this is to keep active but also to acknowledge and stay within your limits.try not to let the fatigue get you down as this only makes it worse. Keep up the walks

What is your condition now? Are you ok?

Many thanks for all of your helpful replies esp calv1960. I will talk to my GP regarding the co careldopa unbranded and let you know how I get on.