Pain with Parkinson’s

[Jebbie12]

I have had severe back pain for 15 months, which steadily got worse for the first 6 months or so. Nothing has worked. I have tried PT, chiropractors, rest, more exercising, yoga and a pain specialist who gave me injections in my spine. Also had an MRI which showed bulging at L3, 4 and 5. Has anyone experienced this? I’m starting to wonder if it is PD related.

[Rufous2]

I don't have PD and have not experienced this kind of back pain, but thought I'd ask if you've tried PEA (palmitoylethanolamide.) It's widely used for chronic pain and may reduce neuroinflammation. mdpi.com/2218-273X/12/5/667 Some here use it in hopes of slowing progression.

One of PEA's intriguing properties is, it acts as a mast cell stabilizer. Mast cells release histamine and are usually thought of in connection with allergies, but they also contribute to pain pathways; frontiersin.org/journals/ce...

LAJ12345 recently posted in-depth about the possible mast cell/PD relationship. I have yet to work my way through all of the links she provided, so I'm not sure if they address pain specifically, but you might want to take a look; healthunlocked.com/cure-par...

Interestingly, a couple of antihistamines were identified by AI as promising candidates for PD; ncbi.nlm.nih.gov/pmc/articl....

[vwolff in reply to Rufous2]

I was especially interested in the article; mdpi.com/2218-273X/12/5/667I have experienced a similar back pain. Have you done more research?

[Rufous2 in reply to vwolff]

PEA (palmitoylethanolamide, NOT phenylethylamine which is abbreviated the same way) is being trialed for everything from Alzheimer's to dermatitis to glaucoma. My interest is specifically in it's neuroprotective qualities, but most of the research has been done on it's pain modulating and inflammation reducing ability. Lots to read by "googling."

If you decide to try it, look for an "ultramicronized" version, perhaps combined with luteolin; the two are synergistic. It's not a "quick fix," like NSAIDS or opioids, so be prepared to take it for at least 3 months before deciding if it works or not. And please report back. 😁

[gomelgo in reply to Rufous2]

That was super helpful info, thank you!

[Xauxatz]

I have the exact same problem, have also tried a lot that didn’t help. Frankly I don’t think it is PD related. Getting over a disc bulge just seems to be hard and sometimes maybe impossible. I am currently doing some exercises (again again) and back stretching, and I’ve stopped doing certain other exercises that would compress the discs and it seems to help a little.

[Biscuit61]

hi

Not sure if Bowen Technique practiced in the States - my PWP goes once a month it’s a very gentle body treatment that looks to resetting issues and have always found it beneficial especially for back problems

[gomelgo in reply to Biscuit61]

Not easy to find a practitioner nearby. But can be very helpful if you find someone seasoned. americanbowen.academy/find-...

[Kingsdaughter1]

If you are willing to take medication, Nucynta was what finally took my severe back pain away. It is an opioid drug but brought me such relief.

[HolisticPeds]

acupuncture was very helpful to me when I had a herniated disk. Muscle spasms may contribute to back pain, too.

[Ep0522]

Have had low back pain for years. Pd meds help after two doses and heat helps. If I wake up with it, I use a heating pad that I heat in my microwave and usually go back to sleep. Mine is definitely pd related. Do your pd meds help at all?

[ottercat]

Hi--sorry you're suffering this pain. I was diagnosed with PD in 2016, had a DBS implant last year (which worked great). I've had a "sciatica"-like pain for a year now, and itdoesn't improve with PT, chiropractic, or shots. Looked at a website called "Curable" and I really like their approach. I'm not taking even ibuprofen presently, and the pain is gradually getting better. I still can't stand up straight when I get up in the morning, but I can manage a walk outdoors by 8:30, without pain, an exercise class after that. It's not "gone" yet, but it is so much more tolerable, and I don't have to worry about drug interactions. (In case you're willing to work outside the box.)

[Gallowglass]

yes it has happened to me. 4 years ago I had a laminectomy and it helped a lot. Now despite doing all the stretches daily, I still have bad pain . I’ve tried everything. Carbidopa levodopa makes it better for around 20 min

[rleedc]

I am a retired Chiropractor and during my 40 years of practice, I have treated many patients with back pain. If you have disc involvement, I would consult with a doctor who offers Spinal Decompression with laser therapy. There are many variables that cause or aggravate back pain so I will suggest some "at home" treatments, especially in the morning, that can be helpful if done consistently. These are some of the treatments that I use for my tight muscles. First, trigger point therapy, can be very helpful with any chronically tight muscles. There is a book you can find on Amazon called A Headache in the Pelvis which will supply all of the info you will need for this treatment. I would also suggest purchasing a Cholas Massage gun which has over 30 speeds of percussion to help relax muscles. Applying lidocaine with essential oils such as peppermint and lavender oil can also reduce pain. There are many other things to take into account with back pain i.e. sitting for long periods of time especially if you're leaning to one side. Well, that's just some suggestions, so if you have any questions, just forward them to me. Wishing you the Best.

[Pauldmd]

I was diagnosed accidentally due to my back pain in 1999 after suffering for years with it. The fact that I was practicing dentistry undoubtedly made it worse. I still am dealing with pain all these years later. I have been through every treatment imaginable. What has been helpful is a spinal cord stimulation implant I had done in 2017. Prior to that I was on ridiculously high doses of opiates. My pain meds are greatly reduced since the implant. Also, I have been having spinal nerve ablation done, which also helps significantly. Please feel free to contact me if I can help in any way. I

[fxrm]

I was diagnosed with PD in late 2014. I have L4-5 moderate central canal stenosis along with bilateral recess stenosis and more pronounced right neural foraminal stenosis. Have right hip pain for many years, sometimes intolerable pain, especially when and after doing chores and sports with a lot of bending over movements (for example when playing table tennis).

I had my first methylprednisolone injection on Aug. 24 this year and in 2 days my right hip pain was significantly reduced even when and after many times of bending over movements. Last Saturday (Aug 31) I had second injection.

Now I still have right hip pain, but much better and does not bother me anymore. I supposed to have a third injection scheduled this coming Saturday and I am thinking to cancel it if severe pain will not come back in 2 days

I am not sure if the severe pain will come back after sometimes but the past week is great without the severe pain.

I suggest you talk to your family doctor about the injection.

[mitochondria]

Hi Jebbie12

My frozen shoulder/back pain is worse when my mucuna (natural form of levodopa I use as medication) dose is low.

you may find this patient-oriented article useful (part of a series that Dr Matthew CL Phillips wrote during his world’s first RCT in Parkinson’s on Low fat vs Low carb diets).

static1.squarespace.com/sta...

Wish you the best.

[Possmenatt]

As per Rufous2 post. I have PD and severe spinal arthritis. The back pain was what started off the route to pd diagnosis. I tentatively believe PEA palmitoylethanolamide works for me. It has been a part of my daily stack for around a year now. I still work in an active physical role. (No prescribed meds)There seems to be plenty of reason to try it. I haven’t opened the attached links but I’m sure they will just confirm my own research and reasons for trying 👍😃

[Hidden]

I have PD and I developed lower back pain. Sports Medicine doctors ran several tests and an MRI showed I had severe stenosis in several areas of my lumbar, which a neurosurgeon translated as a cramping or pinching of my spinal cord. I had a Laminectctomy done last week.I don't think this is something that I can blame on PD, sincei it easier to attribute it to my age(81).

[PDKiwi]

It may be food induced inflammation related. I am very susceptible to plant toxins and a zero carb, very low plant food diet, made a huge difference to my chronic pain.