Seeking a case study for The Parkinson magazine - pain and Parkinson's

URGENT: Seeking a case study for The Parkinson magazine - pain and Parkinson’s

Hello everyone , :wave:

As part of the summer 2020 edition of The Parkinson, we will be featuring an article on pain and Parkinson’s; an informative piece which will outline this common but complex symptom of Parkinson’s, and how it can be managed effectively.

Among various areas, we will explore: the causes of pain in Parkinson’s, the different types of pain associated with the condition, and ways that different types of pain can be managed and reduced through medication and with the help of healthcare professionals.

As part of this feature, we would like to feature a case study who has experienced/is experiencing pain associated with Parkinson’s, and how they live with/manage their pain on a day-to-day basis. We are also interested to hear any tips/advice they might have for others who are experiencing pain as a symptom of their Parkinson’s.

Please submit your interest by commenting on this thread.

Hello @Reah,
Thanks for the email and pointing me to this thread. I would be willing to consider this -
Best wishes
John :blue_heart::sunglasses:

Hi @jps1926,

Thanks for getting back to me.

Can I just confirm if it’s okay to share your email address with my colleague?

Please let me know.

Best wishes,

Hi There i have literally just joined this page hoping to get information on Pain and Parkinsons? I am diagnosed but I do not have the tremor. however I have the strangest pain at night after I go to sleep? As soon as I get up I am able to cope but I can not lie in bed sleeping for more than a couple of hours before the pain gets too bad to stay there. Consequently I get up 3 or 4 times a night and make tea. By about 4.30 am I can not stay there any longer so I get up and stay up. My neurologist only seems interested in balance, obsessions, swallowing etc. I feel this pain is connected but surprised that it is not confirmed as Parkinsons? It is the most unusual pain and weakness I can’t be the only one?

Hi there,
I have been diagnosed for 8 years and suffer much the same way as you do. I also don’t have a tremor,

The pain usually starts in my legs ,sometimes like restless legs but not always,I have to get up as well, I have not had a decent sleep in years because of this,don’t think this will be of much help to you but wanted to let you know your not the only one,
Cheers ANNE29

Just knowing that someone else knows what I am saying is a big help. Thank you Malcolm

Does your neurologist accept this as part of your Parkinsons? Mine does not seem to recognise it as part of mine yet I find it the worst symptom. I can’t wiggle my fingers on the right hand and I topple over etc but I cope with this but just want to be certain that the night pain is part of?

Yes he does think its it’s part of parkinsons

During the night I sometimes have to wake my partner who has to manually Move my arm or leg before I can take over. Does this sound familiar to you? This is my last question and then I will be a Happy Bunny. Thank you.

Yes its familiar. I often have to get my husband to move me during the night.cheers ANNE29

Hi! I am 60, diagnosed about 3 years ago. no tremor but principal problems are pain (various locations) bradykinesia, festination and start hesitation, Neurologist has acknowledged that my pain is PD induced. referred me to a pain clinic at last consultation in February but of course not heard anything back since due to lockdown, i would be happy to help your research

Pain, it’s too much!

I have had Parkinson’s (diagnosed) for nine years Over the last two years the pain from this frightful disease has become more and more severe, to a point sometimes where it is unmanageable.

It takes three forms the most severe is daily and lasts for considerably long periods. It always kicks off with what I can only describe as a a sort of pulling narcoleptic headache. I then get a form of dystonia (muscle pull) plus diskynesia that send me into an awful session of head swaying and muscle pull that is so painful my only slight relief is lying on the bed. The muscle pulling and awful jerking in my cranium and face, is just too much. The whole thing can last from half an hour or up to several hours and can wear me out. I refer to it for want of a better description as “the dreaded” Quite frankly it is getting the better of me and I can’t take much more. The jerking and pulling also seeks out the serious arthritis in my finger an causes severe acute .pain Another point worthy of note is I Invariably become hyper-sensitive to sound.

The second pain source, again a form of dystonia, is associated with my knees. I have two artificial knees and, the pain usually occurs when I get a switch-off, my knee pull inwards together and the pain is sometimes at cry out level and I cannot walk.

Lastly I get an awful residual and chronic pain in my neck caused by the jerking and swaying in my head.

I’m 82 and still have excellent cognisance and a creative mind. I write a lot of 500 word stories, which I’m quite proud of and continue to write crap poetry. I am however getting towards the “Oh sod it I’ve had enough” stage.
Stay safe.

1 Like

Hi @Jules77,

Thanks for sharing this with us. The pain that you’ve endured sounds dreadful and I can’t begin to imagine how this has affected you and your family. As you can see on the thread, there are many other members that share similar experiences to you and as much as the opportunity to feature in the Parkinson’s Magazine has now closed, I will pass your comment to my colleague. There may still be an opportunity for you to share your story on our online magazine.

Best wishes,