The Silent Pain of Parkinson’s
It may take a while to get a diagnosis for Parkinson’s disease. You may see several neurologists, physicians, or movement disorder specialists before receiving correct results.
It’s easier to diagnose Parkinson’s when a patient has the classic symptoms: tremors in one or both hands, changes in handwriting, or a shuffled gait. When the symptoms are “hidden,” it’s harder to make a diagnosis.
You can see when a person is dealing with tremors because they shake. You watch them sign their name to a check and you can barely read it, signifying a change in handwriting. When they walk, one or both arms don’t swing, and they might resemble a penguin because of their shuffling gait. All of these are outward signs of Parkinson’s.
Parkinson’s doesn’t usually present itself so simply. A patient often goes on a wild goose chase before being diagnosed. They don’t present the symptoms that cause a neurologist to look at Parkinson’s as the culprit for their ailments.
I was misdiagnosed with lupus when I started my journey down the Parkinson’s road. It is not an easy disease to diagnose as it can resemble other diseases. It would take over 10 years before I was correctly diagnosed with young-onset Parkinson’s disease.
One of my earliest symptoms was internal tremors. I was in my last year of high school when those began. But no one could see them — not even a physician, a neurologist, or a movement disorder specialist.
My next noticeable symptom, which took me to an eye doctor, was a hemorrhaging optic nerve. I thought I needed glasses. It turned out to be a bit more than that. About five years after that incident, I started treatment for lupus, due to some other changes that were occurring. It was a guessing game.
What finally got me into a neurologist were tremors, gait changes, and some other symptoms. What causes me the most inconvenience now is a “silent” symptom — pain. It can often be debilitating, causing me to miss what I want to experience — life itself.
It’s frustrating to be misdiagnosed or told you’re imagining things because others can’t see what you deal with. But, in spite of what others may think or voice, we must experience what we can in life, even while silently forging through the pain.
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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Wow Sherri, you hit the nail on the head.... i have no tremors and most of my symptoms are non motor. everyone thinks i look normal, but I too suffer from internal tremors that no none can see. this disease always seems to have new surprises in store for us.
Sherri Woodbridge
Thanks, Jean and, here’s hoping for less surprises!!! I told my husband yesterday that sometimes it’s frustrating nor knowing what’s because of PD or is it something ‘new‘? Sometimes hard to know...
Paula Prange
Sherri.
Two months after I was shockingly diagnosed with Parkinson's I was standing beside the casket of my Mother-in-law, when a friend of hers came by and said she had just buried her husband who had died with one of the most painful dieses she had ever seen. It was Parkinson's. Now I know what she meant. The silent part of it is the pain, both physically and emotionally. That was eleven years ago. Thank you for your articles.
Sherri Woodbridge
Paula - thank you for your comment. I am sorry to hear you have to deal with the pain of PD too. Always remember - you are not alone. Praying for you - sherri
Sue
The pain of parkinsons is bizarre- like no other- it can come and go in a heartbeat, present as burning, throbbing,aching,searing and exhausting.
It is there in the background and comes to the forefront particularly when tired, during an off-period and it can wake you when you are asleep.
The pain can be familiar or totally new- it can happen over a period of time or just out of the blue.
Parkinson’s pain appears without limit, it is relentless and often appears without warning , it can wake you up or prevent you from getting to sleep- it is often unnoticeable to others and upon examination it may disappear; but it always creeps back again.
The parkinson’s journey is a difficult one for most -the days where pain is manageable are a blessing-but sadly you always know it will come back to haunt you.
Pain in parkinsons is completely underestimated, Under -researched and sadly not always considered by those who treat and support you.
Parkinson’s can take away your vitality, your patience and much more. It’s perseverance gradually eats you up in side and then spits you out -it is a condition which does not give up -and finding strength from within is often a challenge as parkinson’s can be so destructive and cruel.
The Parkinson’s journey can be relentless and cruel -It is exhausting and still there is no cure.
The parkinson’s community is a remarkable one- we are blessed with the opportunity to share our journey with each other - knowing that this community truly understands the journey we are on and providing hope and strength for us to carry on.
Sherri Woodbridge
Well said, Sue! Thank you!
Kay
Thank you for this post. It’s very helpful. I’m struggling with getting a diagnosis and Parkinson’s is next up. I’ve gone down the MS road twice and also lupus. My grandmother had Parkinson’s and our family is filled with autoimmune diseases. One of the biggest problems I have is pain. It’s a burning, crushing pain that is overwhelming. I have weakness is all four extremities and extreme sensitivity to heat and cold. I’ve had many times when I was unable to walk and bedridden. The doctors have no answers. I’ve had hand tremors for years and was even teased about it, given nicknames as well as accused of being a drunk. My life and dreams are slipping away. While I don’t want to have PD, I need to know who the monster is that has been torturing me for years. Maybe if I know, I can get help fighting it. What is described in this post and the replies makes me feel like maybe PD is the monster. Again, many thanks to everyone.
Sherri Woodbridge
Kay - thanks so much for your comment! My diagnosis took a while as well, going through the MS and lupus testing and being treated for lupus and “waiting to see if it turns into MS”. Is there a movement disorder specialist there near you? You are correct in that if you know what you are dealing with then you can fight it. In the meantime it is so frustrating!!! If you want to talk, let me know. I just noticed your email - are you an art teacher?
Kerry
I appreciated reading this. I am kind of backwards from others here right now - looks like Parkinson's (arm swing, internal tremors, handwriting, rigidity), and was diagnosed by a local neuro and an MDS - the "walks like a duck, looks like a duck" dx. However, the recent subsequent MRI showed brain lesions possibly indicating something else. And my immediate family history is filled with lupus and related autoimmune diseases. So now I feel like I'm moving backwards (and still suspect PD is in the picture, even if in addition to something else). Appreciate knowing I'm not alone in trying to figure this out.
Sherri Woodbridge
Kerry - I hope that you will find the right answer soon as it can be so frustrating to be in limbo. Good luck and don’t forget - you are not alone!
John Eshleman
Do symptoms come and go do some disappear and new ones come along.is pain like burns or being jagged by a needle and muscles having what seems like there being shaked like a rug and spasms at the same time.also i am dizzy and light headed occasionally having hallucinations.and i am forgetting words blanks or. Blank spaces when talking and cant find the word i need .im waking up at all hours cant fall back to sleep.woke today at 130 a.m. i have other symptoms like pill rolling thumb and forefinger when i notice it ill stop it.there s light sensitivity somedays.i feel like im being toyed with
Melissa Lauer
For almost 4 years I have been seeing a rhumatolagist with no actual diagnosis. I survive by pain medication and steroids. Xray and bloodwork are 'normal '. After a steroid shot I am significantly better however I started having a tremors in my left hand, diminished sense of smell, and vivid dreams that wake me up. I walk like I am 102 and can't even turn over in bed without a great struggle. Some pain days are better than others but I have multiple cane locations for the other times. My neurologist has suggested PD. Help