Unexpected pain: Hello everyone, since... - Parkinson's Movement

Parkinson's Movement
17,250 members17,064 posts

Unexpected pain

october61
october61

Hello everyone, since January 2020 pain and stiffness have increased a lot. I really didn’t expect these symptoms to be so strong. Can anyone advise me how to reduce these symptoms?

Thank you

76 Replies
oldestnewest

If you are on B-1, your dose may be too high.

Art

Despe
Despe
in reply to chartist

Maybe your magic recipe will help, too. :) MAGNESIUM OIL!!

mistydog1
mistydog1
in reply to Despe

I wasn't a big believer but magnesium oil does help. I also know somebody who uses it to relieve the spasms from their chemo . Don't know why or how but it does work.

Despe
Despe
in reply to mistydog1

Glad it works, really! I know about pain. :(

JANVAN
JANVAN
in reply to mistydog1

Do you have a brand ? Is it oil to drink or to massage on the skin ??

mistydog1
mistydog1
in reply to JANVAN

It's an external application. It's put out by Health Wisdom. I'm not into taking all these supplements without knowing there interactions . For instance did you know Green Tea can be dangerous for chemo patients. So when I found this and it worked like it said I was surprised. It's magnesium in a aloe gel. My chemo friend uses it for spams and also works for her.

october61
october61
in reply to chartist

chartist, thank you for your reply. I thought the same and I eliminated B1 but the pain persisted, I take Madopar Dispersible and Sifrol.

chartist
chartist
in reply to october61

october61,

If you decide to test mag oil (MO) for pain and stiffness and find it effective, but don't like the feel of it on your skin, there is a homeopathic alternative available that works about the same, but is more pleasant on the skin. It comes at a price premium to regular MO though. Here is a relatively inexpensive MO product for $10 in an 8 ounce spray bottle that will be plenty to test whether it will offer you any benefit.

amazon.com/Magnesium-Oil-Sp...

Here is a link to a homeopathic which works similarly to MO, but is more pleasant on the skin.

amazon.com/Theraworx-Relief...

Here is a link to another homeopathic topical cream that I feel offers a bit more pain relief than MO and is comfortable on the skin :

swansonvitamins.com/natrabi...

For pain relief and bruises, I feel the last link would be my first choice, but as a multi purpose product that can relieve pain, quell muscle cramps in minutes, alleviate muscle tension headaches, alleviate restless leg syndrome in some people, help alleviate a stiff neck and or shoulders, help to minimize pain from fibromyalgia and help some people get to sleep, the other two would be my preference. If the first link works for you, you can save that bottle and make your own MO even less expensively which I outlined in the following post :

healthunlocked.com/parkinso...

I highly recommend that you also read the replies to that post because there is good information in there that you may also find useful!

Good luck and let us know how you do as that information can be very useful for the forum members who may be experiencing similar symptoms as you!

Art

october61
october61
in reply to chartist

Thank you chartist.

Get your homocysteine level checked to see if it's high. If it is, you may want to check for b6, b9 or b12 deficiencies.

In the meanwhile, you can try supplementing with turmeric/curcumin or with serrapeptase enzyme for stiffness and pain control.

october61
october61
in reply to rescuema

rescuema, many thanks for you advice however, I cannot afford to pay to have my homocysteine checked. I will take turmeric and see if this helps, I have nothing to lose.

Take care.

rescuema
rescuema
in reply to october61

Add sublingual b12 at least - pretty inexpensive and will likely help lower homocysteine.

october61
october61
in reply to rescuema

Thanks again.

rescuema
rescuema
in reply to october61

Don’t dismiss Serrapeptase. I avoid pharma pain meds that only worsen problems in the long run with toxic effects along with glutathione waste. The enzyme dose may need to be high to feel the benefits (120 to 240k) but you do need to start slower in case of complications in result of pathogen biofilm rupture, etc.

Also, as mentioned by a few below, moving around and exercising is hugely important to avoid pain and stiffness in general so try not be sedentary and try some aerobic exercises and stretching to oxygenate your body.

Inflammation can affect you in many different ways (just as in PD snowflake) but one way or another the issue must be addressed to prevent further issues down the road.

I know we’re all cooped up with Covid-19, but even if you don’t have an exercise equipment, YouTube exercise videos to follow along. Sitting around for a long time will affect everyone badly, not just people with PD.

october61
october61
in reply to rescuema

I have not heard of serrapeptase before, I just googled it, see below.

Serrapeptase is used for painful conditions including back pain, osteoarthritis, rheumatoid arthritis, osteoporosis, fibromyalgia, carpel tunnel syndrome, migraine headache, and tension headache.

What does it mean when you say “just as in PD snowflake?” Are you saying that I am a snowflake?

Snowflake = A term for someone that thinks they are unique and special, but really are not. It

rescuema
rescuema
in reply to october61

PD is described as a snowflake disease, meaning symptoms fluctuate and differ from one person to another.

Serrapeptase is non toxic anti-inflammatory and it eats up dead protein. It has been used as medical treatment in countries such as Germany and Japan, and it's even effective for autoimmune diseases, sinus, heart, brain, etc.

october61
october61
in reply to rescuema

I hadn’t heard of that expression before. I will look for serrapeptase online, thank you. I am having a good day today, I haven’t eaten anything yet.

MCC950
MCC950
in reply to october61

We too feared testing our homocysteine and lithium would not be cover by our insurance, but when our doctor requested labs for both, with PD being the reason, they were both covered. Call your insurance and ask in advance if they are covered. My husband’s homocysteine was high and the lithium was off the charts low. Now he takes sublingual methyl B12 (5000 mcg) with folate (1,700 mcg DFE) all in one capsule from Ortho Molecular Products. We buy it from our doctor. He also takes a very low dose of lithium. Incidentally we found out that most PD patients have very low lithium.

park_bear
park_bear
in reply to rescuema

Is there any good evidence serrapeptase actually gets absorbed? I have looked and did not find much.

rescuema
rescuema
in reply to park_bear

I noticed drastic pain reduction myself so I attest to the anti-inflammatory benefits. Myriad anecdotal reports under product reviews on Amazon as well.

Some studies on the below search results

scholar.google.com/scholar?...

Try Emergen C for at least 3 weeks and see if that help. It helped me & a few others on this website.

october61
october61
in reply to laglag

Thank you, I will try.

pdkid
pdkid
in reply to laglag

hi laglag, what did it help you with? thanks

laglag
laglag
in reply to pdkid

For approximately 6 mths I was having stiffness & a lot of pain in my thighs and groin area. A friend told me about it and within 3 weeks the pain & stiffness were gone. That was at least 6 yrs ago.

pdkid
pdkid
in reply to laglag

Wow incredible. And you only took it for those 3 weeks?

laglag
laglag
in reply to pdkid

I took it for 3 weeks & the pain went away. From then on I've taken it nearly every day, I miss occasionally. In the winter I take the one that has vitamin D & Zinc which helps boost your immunity which helps fight viruses. You can & should talk to your doctor but it would be worth a try.

pdkid
pdkid
in reply to laglag

Amazing, so glad you fought your pain. Thanks so much for sharing!

What did your neurologist advise? Can you not adjust the sifrol dose. It's made a big difference to me

Poo, I gave up with Neurologist’s a long time ago, I saw 3 of them in a short period of time and received 3 different diagnosis. I have gained more benefit from asking other people with PD about this and that. I have tried taking Sifrol at night before sleeping, early in the morning before getting up, taking a dose in the morning and again in the evening. I didn’t see any difference really. One of my previous Neurologist’s advised me not to take Sifrol ever!

Do you know of any websites that can help to understand the options with Sifrol.

Thank you,

You're going to need someone to prescribe it. Google pramiprexole for information about it. You need to titrate dose adjustments. I am on 0.78mg slow release currently which has the benefit of needing to be taken only once a day and works at night. You can just switch from an equivalent dose of regular to slow release without titration. Maximum dose is, I think, 3.5mg. above 1.12mg there is increased experience of somnolence and orthostatic hypotension. I have high blood pressure so less likely to be an issue for me.

Thank you Poo.

In what way did it make a difference Winnie? Did it help with pain?

Moving is the only thing that helps! Plus sitting in a hot tub. I was unprepared to have pain. No one mentioned it.

Pregabalin works for me.

Thank you, I will find out where I can buy it and give it a try.

What a range of responses! All with little idea what meds you currently take and where the pain is so you have got everyones pet theories. So here is mine. Personally I would be reassessed by a neuro.. pain is no1 complaint from a survey done in UK but rarely talked about. There are different types and causes of pain so different treatments. Stiffness is classic PD and carb/lev is the think which helps me. Madopar dispersable is a very low amount you probably need more and longer lasting . I have high homocysteine so inflamation. It never gives me pain. Just saying.

october61
october61
in reply to Hikoi

Thank you Hikoi.

There seems little point in having another Neurologist give me another assessment. The previous 3 could not agree on the diagnosis.

I would like to find a stronger medication from an online source as here in Indonesia only Madopar Dispersible and Sifrol seem to be available.

soup
soup
in reply to october61

Is mucuna puriens available? It is a source of L Dopa sold online as a good supplement. If you are determined to avoid drug regulated L Dopa it would give you an idea as to its possible effectiveness. Personally, like Hikoi, I would go for the obvious first L Dopa.

pdkid
pdkid
in reply to soup

my dad still gets stiffness when freezing, but using mucuna powder as his source of l-dopa (with a bit of sinemet) has eliminated his sharp pains in his neck and shoulder. its been quite the journey trying to figure out doses, timing, etc difficult to fine tune.

october61
october61
in reply to soup

Thank you. I tried Mucuna powder but it didn’t seem to help. Maybe I can try again.

Fr. Christopher Hogan. I do not have Parkinsons as far as I know, CMTtype 1A. This morning I felt pain much more than at any other time, Shivering, staggering about, and just getting some relief by sitting down, and funnily enough falling asleep. I feel a little better now? I hope you are.

Wit prayers.

Hi! How long you had the PD? It sounds like you are in the same situation with my husband, his PD is 13 yrs. The pain and stiffness on his right shoulder started in October. He is going to do some blood work next week to check deficiencies including homocysteine. He is seeing a naturopath. I’ll post and get back to you when he get the result, maybe in a week or two.

Thanks for the info’, I was diagnosed with Parkinson’s in 2005.

Hope hubby gets some relief soon

My dad has also been suffered from PD since 2005. What doses of madopar do you take? How often? Dad worked well at Sinemet.

I can't give you any advice because the same thing happened to me about 3 weeks ago and seems to be getting worse. So far all I've tried is changing the water I drink but it's only been 2 days and no good results yet. However, mid march is when I arrived home from spending 5 months in Az. and it started within 1 day of that. Coincidence? Let me know if you find anything that helps and I'll do the same for you. I've been taking 3 doses of 25/100 cl. and 1000 mg. B1 recently cut back from 1500, along with lots of C and a normal amt. of D.

Most important---->Do you exercise EVERY day and push it/sweat? Also do a series of stretches, and moderate weight lifting program, take a good quality curcumin, MCT oil (coconut) 3x/day, Omega 3 fish oil, vitamins D, C to name a few... I like wheatgrass too. Also good to do mindfulness meditation.

With PD keep moving, stretching, bending.... like a car if u don't use it ...seizes up. Good Luck!

october61
october61
in reply to gginto

Thank you, I ride my bike as much as possible but during my Indonesian lockdown I have been unable to.

Slow abdominal breathing and taking Glycine supplement 1000mg can relax the body and reduce the pain notably.

Pain is one of my main symptoms when my carbidopa-levodopa is wearing off. First in my shoulders then upper arms spreading into clavicle area. When it gets going if I raise my arm it will pop, it's so tight and hurts like hell. I sit and wait it out until my meds kick in again. They are the only thing that makes a difference as it is related purely to lack of dopamine.

PalmSprings
PalmSprings
in reply to Enidah

You could have been describing how I feel! I wake up in pain and I go to sleep in pain and I try and distract myself from the pain during the day but with social isolation I am finding this harder to do. The only relief I get is from the medications. When the dopamine starts to work I feel better for a while, I can tell when I need my next dose! I try and stretch between doses to get the most waking hours of “okay” that I can get?

october61
october61
in reply to Enidah

Yikes! Thank you

Hikoi
Hikoi
in reply to october61

So you live in Indonesia, you have had PD since 2006 (diagnosed) you dont have a doctor or neurologist but try out drugs to see if they help. In indonesia there are no drug restrictions, everything can be bought over the counter. Have I got that all right?

october61
october61
in reply to Hikoi

Pretty much however, there’s more. I have an opportunity to work again as a Construction Manager, here in Indonesia. The project starts in June and so I would like to reduce my symptoms to the extent where I can take up this position. I love it here.

pdkid
pdkid
in reply to Enidah

my dad has slowly transitioned to getting most of his l-dopa from sinemet to mucuna powder and while he still experiences stiffness, his sharp pain (which sounds a lot like yours) during wearing off has disappeared. it was quite the slow process of transition though, and he still does take the sinemet, mainly for the carbidopa.

Enidah
Enidah
in reply to pdkid

Thank you for the information. Being off my meds wouldn't be that big a deal if it didn't cause so much pain.

pdkid
pdkid
in reply to Enidah

Im sorry :/ hope you can find relief soon...

I use devil,s claw extract

I really don’t know why pain does not seem to be acknowledged as a PD symptom. Hikoi, do you have a link to the UK survey you mentioned in your post above?

My husband was diagnosed with PD in 2005. His ‘bad’ pain started two years ago emanating from his back, going down through his buttocks, thighs, calf and ankle. He had pain for about 5 years before that but it was manageable. He’s seen various doctors and specialists as well as having MRI scans to try and get to the bottom of it. They concluded his pain was being caused by spinal stenosis for which he’s had various steroid injections in the spine, none of these worked so he had spinal surgery last summer which seems to have made the pain worse as there is now some scar tissue. The orthopaedic surgeon said there is nothing more that can be done surgically so has put my husband’s pain down to Parkinson’s. He’s now been referred to a pain management team and all they can offer is a cocktail of various strong pain killers.

Hubby is taking HDT (still not sure if we’ve hit upon the correct dose), and many other supplements including magnesium, lithium, B12, etc. Have just ordered glycine and will be trying that next week but it’s all trial and error. He seems a lot better these past couple of months but he says the pain is still there - he just seems to be managing it better.

Unfortunately he is unable to exercise as he is not very mobile mainly due to arthritis, pain and his legs feeling heavy and as though they are going to collapse (he can only stand for a maximum of 5 minutes). However he does manage a 12 minute walk around the block using a walker almost every day.

Our main concern right now is COVID-19 and trying to avoid it by building up our immune systems so we’re both taking relatively high doses of Vitamin C and Vitamin D.

Good luck with finding something to help alleviate your pain.

Interesting...

I had 2 surgeries to correct a spinal problem but after 4 or 5 years it became apparent that the surgeon wasted his time on my problem but had a healthy bank balance. I am considering visiting a chiropractor in Jakarta.

I can ride my bike, usually 3 or 4 times a week, I enjoy it.

You are lucky to still be able to ride your bike.

Glen saw an osteopath 4 years ago who, initially, was able to help with the pain but 2 years ago when it became very bad, he wasn't able to help. Last year in the months running up to Christmas, Glen saw a chiropractor who came highly recommended. He was good & seemed to know his stuff but no relief from the pain was forthcoming unfortunately.

Yes, I enjoy riding my bike, I usually manage somewhere between 15 - 20 kms each time. However, I have been unable to ride since the COVID19 thing took over the world.

I am sorry to read that Glen didn’t get any joy from the chiropractor with his pain.

One thing I have noticed is that food has a negative effect on my condition, if I don’t eat things are better. However, a guy has to eat sooner or later. Ask Glen to eliminate dairy for a couple of weeks and then reintroduce it, see what happens....

Thank you

I wish I could get him to cut out dairy but don't think it's going to happen. He doesn't eat much anyway but when he does, it's all the wrong things. I've been trying to get him off sugar and gluten - he's cut down massively but with Corona lock down, I've noticed his consumption of both is increasing. I'm also trying to get him to eat less meat & more veggies, so for him to cut out dairy I think would be the last straw!

If not dairy, try eliminating fried food.

We don't each fried food as such, except maybe stir-fry or the occasional egg.

Glen agrees with you about not eating though. Yesterday he didn't eat all day (until the evening) because he didn't feel like it, and his pain was not as bad.

If you can find it try magnesium oil. You may be able to get it online or in an organic store. I've been using it for my arm that I partially tore my tendon and it really does work. Don't know why or how but it works great.

october61
october61
in reply to mistydog1

Thank you

What kind of pain? Nerve? I use Gabapentin and Duloxetine.

glenandgerry
glenandgerry
in reply to Rscott

My husband was prescribed both of those for pain. Unfortunately the Gabapentin didn't seem to work and he developed some kind of reaction to the Duloxetine by red weils/lesions coming up on his skin.

Rscott
Rscott
in reply to glenandgerry

I’m sorry to hear that. The gabapentin didn’t work by itself for me until I added a small amount of the duloxetine

You also say elsewhere that a neuro said you didn't have PD. I wonder why he/she said that?

As to drug treatment you would do best to look at the resources of PD organisations. It is not only what drugs but timing and strength. It is a delicate balancing act with each persons regime being different.

october61
october61
in reply to Hikoi

The Neurologist said that I didn’t have Parkinson’s but he didn’t know what I had. He sent me to a Psychiatrist, I saw him 3 times and gave up. I don’t have medical insurance hence, I try to manage my symptoms with help from others in a similar situation.

Hikoi
Hikoi
in reply to october61

Hi,

You certainly dont sound to me like you have PD. If you dont then levadopa will not help or make you feel better. You really need a proper diagnosis to get appropriate treatment.

You may find the fnd forum helpful. FND = Fuctional neurological disorders

Take magnesium citrate 500mg before sleeping. and bei of the corona I take Valerian drops .or vaben

did you change treatment during this time? My dad, after changing sinemet to madopar, has greater stiffness and functions poorly. I am currently trying high-dose vitamin B1 HCL therapy.

You may also like...