Pain with PD

[cjCardio53]

I have pain that is in my lower back, neck and shoulders...mostly in my R lower back. It is different every day, Some days I don't have pain in my neck, etc. My neuro thinks it is "neuro pain" that is treated with gabapentin. I don't want to take this med. I want to look further into this, a pinched nerve? Kidney disease? I need to get some labs and perhaps an MRI?

[Enidah]

I would add dystonia and muscle spasms to your list of things to check into. I have the Movable Feast of pain also and I always wonder where it will pop up next. That's a fun game. Right now it is mostly on the right side of my neck into my shoulder and back but I know it could change any time...it started on the left side of my neck and worked its way around.

[parkie13 in reply to Enidah]

Naltrexone definitely does work, at least for me .

[OKWY in reply to parkie13]

Hi Parkie13, What dose Naltrexone do you take? I know that some Rheumatoid patients have tried LDN (low dose naltrexone), so just want to clarify what strength has worked for you.

[cjCardio53 in reply to Enidah]

Thank u...and YES it REALLY SUCKS!!

[cjCardio53 in reply to Enidah]

It sucks.

[cjCardio53 in reply to Enidah]

Thx

[park_bear]

There are many different possible causes of lower back pain. You need a proper diagnosis by someone who understands what these causes are and how to sort them out. Among the possibilities are dystonia as pointed out in Enidah's comment, muscle strain, subluxation, lumbar intervertebral disc troubles, and lumbar facet joint issues which I discussed here: healthunlocked.com/cure-par....

[cjCardio53 in reply to park_bear]

Thx

[Gymsack]

You have described my single biggest problem . On a bad day , I mostly lie on my back on my bed. I wear a back brace with velcro which make it bearable. The pain medication I use is a combination of THC and CBD from Cannabis purchased at the Cannabis store here in Canada . where it is legal. It is the only thing that helps and it really does help. So far, after 3 years absolutely no side effects or unwanted reactions. It is expensive so I grew 2 cannabis plants in my back yard this summer and I am now drying it so I can make my own sauve all legal in Canada.

My neurologist says the text books say that there is no pain with Parkinson's so it is my family doctor's problem . My family doctor (GP) has put me into every type of scanning machine there is looking at my kidneys and my spine and neck and the reports say there is only an old football injury that healed itself and nothing that would cause pain. My GP and I are convinced that it is caused by the fact that I tend to fall over backwards and my stupid brain can not get the signals and information to know where vertical is and keeps telling my back and neck muscles to compensate which if they do then I will fall over backwards so now I am becoming a hunchback ( the bells , the bells). My arms hurt from constant quivering ( no medical definition for quivering ) and I have arthritis and deformation in my knees so I shuffle stiff legged. If I get up on a ladder first step or a stool higher than 10" my body moves back and forth trying to find vertical until I finally fall off.

my recommendations:

1/ loose all the weight you can

2/ try exercise to strengthen back and stomach muscles (damn near impossible with out help from your arms, too late for sit-ups, try a health club, gym , or physical therapy)

3/ walk with a wheeled walker as much as you can

4/ be very careful when turning around,very careful

5/ get some cannabis cream , use lots

6/ get a back brace belt , make sure it fits properly

7/ do not bend down and pick up anything ( leave it ) or obtain a long pick up stick

8/ be careful sitting down and getting up from dinner table chairs or toilet do not move and turn at same time .

[cjCardio53 in reply to Gymsack]

Thx

[Javafran in reply to Gymsack]

What amount and how often do you use cannabis CBD?

Also same question for cannabis THC?

Pain is becoming persistent and more painful as time goes on

Thank you!

[Gymsack in reply to Javafran]

royalqueenseeds.com/blog-ho...

The above lead will take you to a website with information.

Basically I put enough on to cover the pain full area

There is a misconception

People think that they need to use CBD only and no CHT to treat pain and not get high. The fact that you are using it TOPICLY on your skin instead of smoking , vaping or ingesting in food means that very little will get to the brain . CHT has its own pain fighting uses and CHT helps the CBD , so little reaches you brain and blood stream that it seldom shows in a driving roadside drug test.

[Javafran in reply to Gymsack]

Thank you,

[christymw]

Have not posted for some time but was here tonight looking for discussions on PD related pain and how others are dealing with it. Lo and behold I found a current thread!

I've been dealing with random pain as well. It's usually in my neck at or near the hub where the dbs leads attach to the neurotransmitter. However it can radiate to shoulders, upper chest, arms, wrists and hands. It is impossible to ignore and is by far the very worst of PD's multiple crimes against me. After many years of attempting to get my neurologist and/or neurosurgeon to address my complaint, my current neurologist is finally paying attention. He suggested gabapentin 100mg as needed for pain. It's definitely not an ideal medication, but the dose is low, my side effects are minimal and it does help. I take 1 100mg capsule at bedtime, if I'm really having an extra painful day I add some tylenol and motrin to the mix - they might not be effective against nerve pain but they do help relieve the inflammation and related muscle pain related to how the rest of my body handles being attacked by the PD monster. You could also try cold compresses or heated neck/shoulder wrap - I have a cherry pit filled neck wrapped that I warm in the microwave - probably more of a comfort measure, but I appreciate any comfort against PD at this point!Good luck to you! Chris

[cjCardio53 in reply to christymw]

Thx

[cjCardio53 in reply to christymw]

Did you have MRI to confirm it was neuro pain ?

[christymw in reply to cjCardio53]

No MRI. I think my neurologist just made a clinical diagnosis. The most unforgiving location of my pain is upper left neck. It is the location where the DBS leads from the left and right sides of my brain are joined and attached to the6 I neuro transmitter that is implanted beneath my left clavicle. So it may be nerve pain related to that, but he says pain is common for people with PD. He also says it is difficult to treat- I can attest to that! Keep looking for answers and stay well,

Chris

[cjCardio53 in reply to christymw]

You 2. 👍

[JeanieBeanie]

I don't have PD but have had back trouble for years. Exercise works really well. Sit on your chair or settee towards the front and stretch your left arm to touch the floor. You will feel the stretch in the right side of your back. Another good one if you are able is to lay on your back and draw your knees up to your chest. The stretch feels wonderful. Also on your back do tummy tucks and pelvic floor exercises in your lower abdomen. I have paid Osteopaths, Physios and Accupuncturists who gave me these exercises. I have had improvements in two days. If all this fails there is CBD Oil.

[parkie13]

I use 3 mg a day , you can take it anytime, not just at night . My PA prescribes 50 mg pills. I use a small spice jar and add 50 ml of water to it and put the pill in it to dissolve it. I ask the pharmacist for pills with no coating on it. I use a small plastic syringe with 3 ml mark on it and squirt that into my mouth. I keep the little jar in the refrigerator and wash it well in between period. Hope that helps . Mary

[cjCardio53 in reply to parkie13]

Thx

[cjCardio53]

Hi...I was prescribed gabapentin, 100 mg too, I just don't want to take due to side affects...I am going to NP next week and am hoping for MRI to rule out spinal stenosis, etc. Then I may have 2 go on?

[Kingsdaughter1]

The pain that I experience in my neck, shoulders and upper back is the worst of my PD symptoms. I am currently combatting it with injections every three months, taking Celexa once a day, an electric shoulder massager and stretching. Some days are better than others however I haven’t experienced a pain-free day in a long time.

[cjCardio53 in reply to Kingsdaughter1]

I do excercises, infared heat etc with no relief either.

[Kingsdaughter1 in reply to cjCardio53]

It is so frustrating!

[Kat343]

My HwP takes 4.5 mg of LDN at night, initially it is stair stepped up from a lower dose to the 4.5. We do not think its working however, but he has strong pain in many places. Our chelation doc says to keep using it however, our neuro does not know anything about pain management. We have been doing PRP and Prolotherapy in his shoulder and knees which is definitely helping. Hewill be going to a doc in 2 weeks who specializes in that therapy for lower back as most practitioners cannot do the lower back unless they have special equipment. I had the PRP in my lower back 4 years ago and it worked GREAT but will look into getting more in the next few months. I had stem cells in both knees at the same time in 2019, worked GREAT and have now done 2 PRP/Prolozone treatments in them over the last 2 months and my knees are 70% better. Good luck!