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The pain is higher one day, the next day lower. Mostly one side of the spine at a time, but shifts to the other side, too. This pain never goes away - just moves around to different places along my spine. If this is is something you experience, please let me know what helps.

August 9
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A MyParkinsonsTeam Member

I have had chronic painful back issues for a long time now. I have had a diagnosis of PD for 10 years. I have gone to pain management clinics and have had numerous surgeries and procedures; all to no avail. to no avail. I also have scoliosis (49%) , but the various doctors have told me that should not matter. I am just coming to the realization I will just have to deal with it. I am sad because I used to do IronMan events. I cannot walk a block now without pain. The only thing left really is swimming but I also suffer from fatigue and some apathy.
You may wish to try either PWR!Moves or the BIG and LOUD programs. Contact a Physical therapist who has had education with PD and PT. They usually are fairly decent. Your OT with PD experience may also provide this information.
Best of Luck! Keep moving and using your brain!

August 10
A MyParkinsonsTeam Member

Yes, back pain is common in people with Parkinson’s, and it can move between the lower back, middle back, neck, or either side of the spine. Parkinson’s-related rigidity, muscle spasms, dystonia, poor posture, leaning to one side, and changes in walking can place uneven stress on the muscles along the spine. Some people also notice more pain when their medication is wearing off.

However, severe or moving back pain should not automatically be blamed on Parkinson’s. Arthritis, a pinched nerve, spinal-disc problems, osteoporosis, kidney trouble, or another medical condition could also be responsible.

Describe the location, timing, and type of pain to your neurologist. Mention whether it changes with movement, position, or Parkinson’s medication. Your neurologist may recommend an examination, imaging, a medication review, or physical therapy with someone familiar with Parkinson’s.

Seek prompt medical care if the pain comes with new weakness or numbness, loss of bladder or bowel control, fever, unexplained weight loss, chest pain, difficulty breathing, or follows a fall. Otherwise, talk with your neurologist so you can find out what is causing it and hopefully feel better about it.

August 13
A MyParkinsonsTeam Member

Thank you, Jim! Sounds like exactly what I've been dealing with, too.

August 9
A MyParkinsonsTeam Member

That is what I’ve been dealing with for ever it seems. Like you it moves around always hurts but sometimes it’s worse on one side. I take Tylenol every day. It’s worse when I sit for long periods and when I drive or sit in a car. Exercise and movement helps. I’ve come to the reality and do my best and pray.

August 9
MyParkinsonsTeam

Shifting, chronic back pain along the spine is something others with Parkinson's have described experiencing too. You're definitely not alone in this.

Parkinson's-related muscle rigidity can contribute to spinal pain, and it can interact with the spine in ways that cause nerve-related discomfort. Some MyParkinsonsTeam Show Full Answer

Shifting, chronic back pain along the spine is something others with Parkinson's have described experiencing too. You're definitely not alone in this.

Parkinson's-related muscle rigidity can contribute to spinal pain, and it can interact with the spine in ways that cause nerve-related discomfort. Some MyParkinsonsTeam members have described severe lower back and nerve pain that their doctors attributed to spinal degeneration combined with Parkinson's rigidity creating trapped nerves.

Others have noticed their back and sciatic pain seems tied to dystonia — the muscle cramping and twisting that can come with Parkinson's. Since dystonia tends to flare when dopamine levels are low (like early morning or between doses), the shifting nature of your pain might be worth tracking in relation to your medication schedule.

Some things that members and care teams have found helpful include:

- Tracking when pain occurs relative to medication timing
- Noting which side and location the pain is on each day
- Asking for a referral to a pain specialist — one member found real answers this way
- Discussing dystonia management with your neurologist, which may include medication adjustments or other interventions

Bringing detailed notes to your neurologist or a pain consultant could really help them pinpoint what's driving the movement of your pain and find the right approach for you.

August 9

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