Back to my leg pain issue: This symptom... - Cure Parkinson's

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Back to my leg pain issue

rebtar profile image
rebtar

This symptom just seems to get worse and worse. I wake in the morning and even with increasing my first dose of the day to 2.5 25/100 tablets, the leg pain doesn't subside until close to 3 hours later and then comes back before the second dose, which is 2 tabs. Sometimes I have the pain all day. It's in both buttocks, left thigh front and back, and left ankle. Sometimes it's a deep ache but it can also be a sharp cramping pain if I move too quickly or in the wrong way...

Laurie Mischley suggested I might want to try Apokyn first thing in the AM. Not sure I can afford it but I'm wondering if anyone has tried this.

I use magnesium oil and it helps a little for a short while, but not a solution. I also take magnesium supplements.

I'm wondering if the following might help:

Stopping eating meat?

Any supplements I should try or lab tests I should do to rule out some deficiency?

I've tried B1 several times at dosages from 100 up to 4000mg. Each time it gave me hip pain similar to what I'm feeling now, so I'm reticent to give it another try.

I'm doing core strength exercises because I noticed that if I engage my core muscles, it reduces the pain.

This started maybe a year and a half ago, but it wasn't nearly this intense and it went away when I increased my C/L dose. Now I'm at a dose that's starting to give me dyskinesia.

I would be super grateful for any suggestions.

Rebecca

51 Replies

Recently a friend of mine (doesn't have PD) developed sharp pain in one of her buttocks, was treated with steroids which brought some relief and later diagnosed with a cyst on her spine which is putting pressure on the nerve going to the buttock muscle. Not sure if this helps, but may be you need a good examination to rule out some conditions.

rebtar profile image
rebtar in reply to faridaro

It has responded to C/L increases in the past. But I agree I should check into other possible contributing causes.

rebtar profile image
rebtar in reply to rebtar

I also have no pain at night. Only when I start to walk in the morning. It seems to be worst at night before bed when my last dose wears off. I’m starting to have pain in my left firearm and shoulder as well, more like a burning pain.

Are you on any statins? My husband was on Lipitor for years. He experienced muscle ache and tightness in calves and joints. Recently when his blood pressure went up his Lipitor was also increased and after a month his aches became so bad that he could hardly walk. Cardiologist told us to stop for 2 weeks or until pain goes away - it took 1 month for the pain to move from 9 to 3 and cardiologist was surprised that effect lasted so long . He has since been on Crestor and his muscle ache and tightness no longer present an issue.

It was hard to determine if it was PD or other meds causing it or some other underlying cause. You need to investigate further as faridaro suggested.

Here is a link to a post I wrote on 10 different types of topical pain relief that vary in efficacy and can be stronger than mag oil which is included on the list. The four that I found useful in order of efficacy are Voltaren Gel 1% now available over the counter with no prescription, StoPain Roll On available at Walgreen & Walmart or online, The Arnica Rub from NatraBio available at Vitacost and other online supplement suppliers, it is a homepathic combination that is less likely to be reactive as regular arnica topicals can be and last, mag oil. MO is the weakest pain reliever of this bunch, but may be synergistic with any of the first three because they relieve pain and MO can help relax muscles.

Here is a link to that post :

healthunlocked.com/cure-par...

If those are not strong enough, then look at the top option. Call a compounding pharmacist, explain your situation regarding PD related pain and they can make a recommendation on a potent topical pain reliever which they can compound for you and these will offer pain relief like morphine or stronger without having to expose your whole system to a pain reliever that is only required in one or two places. Explain the situation to your doctor over the phone and ask if he will write a prescription to the compounding pharmacy for their recommendation. Regular pharmacists can't do this, it has to be a compounding pharmacist.

Art

rebtar profile image
rebtar in reply to chartist

Thanks Art

chartist profile image
chartist in reply to rebtar

Here is another post about how a friend used a compounding pharmacy to very good effect to deal with intractable pain:

healthunlocked.com/cure-par...

I just spoke with her 3 nights ago and the compound worked well that he made for her with 5 or 6 active ingredients in it and her doctor wrote the script based on the compounding pharmacist's recommendation.

It's always good to have options!

Art

Rhyothemis profile image
Rhyothemis in reply to chartist

Another topical is LactiGo. It is mainly used to prevent muscle soreness from exercise, but it might be useful for pain relief from other causes. The active ingredient is listed as menthol, but the actual main ingredients are carnosine and magnesium. Carnosine is interesting since it reduces acrolein; acrolein increases activation of TRPA1 receptors, which are activated in neuropathic pain. Carnosine is also available as an oral supplement. Oral beta alanine can be used to increase carnosine levels and is preferred by many in sports medicine, but it can produce a transient pins and needles sensation ( I found it unpleasant).

rebtar profile image
rebtar in reply to Rhyothemis

thanks

chartist profile image
chartist in reply to Rhyothemis

Interesting! So the magnesium and menthol relieve pain and the magnesium can relieve some muscle tension. I have not read much about topical carnosine, but I thought it affected the sympathetic nerve activity, which might explain the pins and needles effect that you mentioned. I'll have to read more about it. Thank you!

Art

Rhyothemis profile image
Rhyothemis in reply to chartist

The pins and needles is from oral beta alanine; the effect is transient. Oral beta alanine is also used for 'water allergy':reddit.com/r/aquagenicpruri...

~

Here's a podcast on LactiGo; the guest cites a research study that was published in Journal of Exercise Physiology Online. The journal is whitelisted by JournalGuide, but it still looks sketchy. The study authors are at a for-profit college:

youtu.be/SNbalBB6QyY

So I can't say if this is legit or not.

I tried LactiGo on my left leg yesterday & did some weights. I had not done any weight training for a long time (bad me!) so I took it really easy. I only feel a little bit like I worked out in my right leg, and nothing at all in my left. My upper body is a bit sore, though. I have been taking oral carnosine for the past week as well, but don't want to really get into what I may/may not be experiencing from it right now.

~

Oral carnosine has been used to prevent chemotherapy induced neuropathy:

pubmed.ncbi.nlm.nih.gov/305...

Acrolein has been implicated in PD:

pubmed.ncbi.nlm.nih.gov/339...

pubmed.ncbi.nlm.nih.gov/312...

Carnosine quenches acrolein & 4-hydroxy-trans-2,3-nonenal (aka 4-hydroxy-2-nonenol)

pubmed.ncbi.nlm.nih.gov/164...

~

My father suffered a lot from neuropathy with his MSA; it seemed to be what he mentioned most. The next thing was the OH. He said he felt better on Lion's Mane - I think he was mainly referring to the neuropathy - so it might be worth looking into.

I remember trying Lion's Mane since I had sciatica and it seemed to make me worse so I stopped. I got rid of the sciatic and also plantar fasciitis doing static stretching (had to hold the positions a long time, like 2 minutes or more each); I think someone mentioned yoga and stretching below. It definitely helps with some types of pain.

I think it might be a sort of restless leg syndrome gone into overdrive. Might be worth trying pramipexole- has a lot of potentially bad side effects, so proceed with caution. I’ve been taking it for 6 months (to help with freezing which it doesn’t!) and been ok side effects wise.

Have you had it for long? I ask because my friend got terrible leg pain after her covid jab, but it went away after a few days.

LAJ12345 profile image
LAJ12345 in reply to Astra7

Which vaccine? My sister has just had the AstraZeneca and has developed pain in buttock lower back. Sounds similar?

Astra7 profile image
Astra7 in reply to LAJ12345

Yes. It was the AZ. She was in great pain for a few days then it totally went away.

rebtar profile image
rebtar in reply to Astra7

Yes, I've had it for about 1 1/2 years I think, but it was minimal at first, and completely resolved with increases in C/L. It's bilateral, but much worse on my more affected side.

I’m curious if you may benefit from more movement type of exercise . Claire at Rogue physical therapy in CA, is a great resource. Laurie Mischley has a lot to say about exercise and PD. The videos she has available but also include Claire are fantastic.

rebtar profile image
rebtar in reply to Joyfulgianni

That's part of it. i'm definitely better when i exercise more, this week i've had much less exercise fir a number of reasons, and in general during the pandemic my routine has suffered. I may have to deal with some dyskinesia while i get the exercise going strong again. too much on my hands lately. exercise needs to be top if the list.

laglag profile image
laglag in reply to rebtar

Stress can create a lot of unexplained pain, so exercise/yoga/meditation, etc. will probably help.Hope it helps you. 😊

rebtar profile image
rebtar in reply to Joyfulgianni

Thanks

rebtar profile image
rebtar in reply to rebtar

Yes, too much stress lately. Time to turn down that dial.

Parkinson's gets blamed for everything and often times that is the case, but not necessarily in this case. You need a diagnosis, and for that a visit to the doctor is in order.

With that said there are some diagnostic measures you can take yourself:

If cobra pose relieves the pain that is an indication of pinched nerve at the lumbar spine.

The ankle brachial index compares systolic blood pressure at the ankles to that of the biceps. Blood pressure the ankle should be greater, ideally 1.2 to 1.4 times that of the bicep. If it is less than the blood pressure at the bicep this is indication of peripheral artery disease.

Here is a Google search of "Leg pain differential diagnosis" if you wish to pursue this further on your own first:

google.com/search?hl=en&as_...

It may not be pd. i used to get pain in thigh bit like sciatica but was tightness in hip. Yoga can deeply stretch muscles. I currently hv torn tendons in leg from dog running into me but all pain n swelling is showing in foot. A gd physio is brilliant to locate tenderness

What u trying to say is think outside thhe box

U say u tried B1, bad reaction means it will work for u but dose was too high. When i od'd on B1 it took a while to clear out of system- maybe look at againn when calmed down.

Gd luck

rebtar profile image
rebtar in reply to alaynedellow

I can take 100mg in my multivitamin. Any increase from there caused hip pain. That was over a year ago, I can try to inch up again...

You've just described my husband's pain exactly, except his is on the right. He's been living with it for about 5 years. He's had many steroid injections, physio, hydro and even a back op, all to no avail. The doctors just don't know how to deal with it. He's on morphine patches but even that doesn't seem to help.......what to do?

I also have cramping and pain in left arm, leg and foot. Just saw a new neurologist and he checked my iron ferritin level. It was below 75 so he started me on iron supplements. Last night was the first dose and of course to early to tell if it makes a difference. I’m taking two Ferrous Sulfate 325 mg daily. He also put me on gabapentin and I have noticed some improvement even on the first week low dose. My brother is a naturopath and pharmacist and he suggested magnesium glycinate 500 mg 2-4 daily. I wanted to try the iron first but if no success will try mag. Good luck.

I suppose I am lucky and should be grateful that I am relatively pain free but I was not always this way. I was offered steroid injections in my back for the crush fractures I had to my spine (not really as bad as this sounds) but the osteo specialist who had me under his care said I would get used to it as there was really no treatment. So I asked t'internet. The internet threw up Serrapeptase which is an enzyme created from the silk worm. Robert Redfern became my guru and his e-book is free to download. Within a fortnight I was off the ibuprofen which is not recommended for someone of my age (76) and even after the PD was diagnosed I have kept it up. I take 2 2500 ius twice a day 2 hrs after food and 30 mins before. RR has his own team who will answer any queries that you may have and his ebook covers most illnesses and is the area where I found the other supplements I take. It costs nothing and although he has his own vitamins for sale I use Vitacure for my Serrapeptase and gingko biloba and they are my first port of call when I have a query. The lack of success I was having finding suitable b1 from the internet was getting me down as Vitacost - which was recommended always states "currently unavailable". well that is no bloody good to me I WANT IT NOW! So I rang Vitacure and they don't do it but guess what they know someone who does. G.G vitamins available on Amazon are apparently also very accessible to the likes of us. People who don't know where to go. So for your painful legs - call Jim at Vitacure and ask his advice. Sadly closed on Wednesday and Thursday due to Covid. I placed my order yesterday and it will come today which is why I am not being more specific about the details of this company I am a first time user but as an Amazon Prime customer it is a 24 hr no extra charge delivery service. PLUS - there is a 5% discount for reapeat purchasers. Which we will be if their B1 allows me the ability to smile again!

Rebtar,I was diagnosed in 2017. In 58. Suffered extreme calf muscle tightness. Currently taking 2 mg Neupro supplemented with CDP Choline (250mg) before bed. I also take mucuna instead of Sinemet with an NADH lozenge. It seems to eliminate the tightness and toe curling of my left foot

rebtar profile image
rebtar in reply to billPD

Why NADH? I’ve heard a lot about taking NAD+ which gets depleted with age (and disease), but I hadn’t heard of taking NADH.

billPD profile image
billPD in reply to rebtar

NADH is the active form of vitamin B3, and helps raise levels of dopamine in the brain. (mixed results)

Consider getting an ultrasound. My leg calf pain 😫turned out to be a blood clot. I was diagnosed with pd in 2016

rebtar profile image
rebtar in reply to bigl62

Since my leg pain in s worse on my more affected side, and is responsive to C/L, ups and downs relate to C/L doses, I’m quite sure it’s PD related. I never had leg pain before PD.

Hi from Sweden!! I have noticed that my cramps are triggered by foodadditives, wheat and dairyproducts. Also sulfat in wines . Whatj helps is sleeping pills, codein . I avoid wheat and dairy in any forms..

rebtar profile image
rebtar in reply to Carpediadem

I eat no gluten or dairy, no wine.

Carpediadem profile image
Carpediadem in reply to rebtar

Try to be totally without wheat and the other grains!!

I too have terrible pain, mine in my right hip and lower right back. Right side is my better side, so a double whammy. I have been to PT, chiropractor, massage therapist, acupuncturist. PT worked on core strength and stabilizing my hip joints, what she thought was source of pain (favoring one side due to muscle stiffness and rigidity related to Parkinson's). She also said I overarched my back when standing, putting pressure on nerves, and worked with me to adjust my stance (I had related numbness that has since resolved). Chiropractor had no effect. Massage felt great and may have afforded mild relief.I'm with acupuncturist now. I'd gone before Covid and now that I'm vaccinated, feel safe returning. Five weeks later, one visit per week, pain still there but sleep and digestion are better. I'm being patient and hoping for some pain relief.

Mine, like yours, is relieved by Parkinson's meds. I'm 99% certain is caused by PD. When I wake up in the middle of the night and in the morning, it is at its worse. Lying down and sitting for more than an hour or two makes it worse; I make myself get up and move. Yoga, stretching help. Walking is painful but I walk anyway.

I believe most my ills are a result of PD. Several months ago, I had sharp pain on my lower right abdomen, pretty bad, no fever. Asked my neurologist the next day if could be dystonia. He told me to call my GP--between the 2 of them, depending on how it progressed, they said to could be appendicitis, UTI, shingles, spastic colon, . . . I forget the rest. Urine and blood tests and a CAT scan later, no diagnosable cause. It lasted about 2 weeks, although original severity subsided. I still experience now and then. I still think it's PD-related.

I do use magnesium/hemp cream/lotion, CBD cream, some spray called Evil Bone Water I get from the acupuncturist for pain. I eat gluten-free. Meditation helps too. PT suggested dry needling might help, but I had it for a shoulder injury once and it was painful and invasive. Sometimes I'll take two Tylenol to sleep.

That's been my experience. I hope some is useful to you. I'm hoping for improvement, but more that it doesn't get any worse.

I would also encourage you to rule out non PD causes for your pain. About a year ago my husband (non PD) developed severe intermittent pain in his left hip and leg. Long story short he was diagnosed with lumbar spinal stenosis put on a course of oral steroids and within the second day his pain was gone. About six months later the pain returned and he got an injection in his spine. Shortly after his first bout I started having sporadic pains down my left leg....sharp shooting like an electric shock. Got it checked out and was also put on a course of oral steroids for lumbar spinal stenosis...pain was gone the next day and has not returned. Stenosis can also be cervical and cause neck and arm pains. Just saying as others have...don't assume it is from PD. Check out those differential diagnoses.

Donna

rebtar profile image
rebtar in reply to Sane1

Orthopedic surgeon?

Sane1 profile image
Sane1 in reply to rebtar

I started with ortho who ruled out the hip with xray. He noticed some thickening around the lumbar spine and referred me then to orthopedic spine surgeon. Not to belabor or make light of this but shortly after my bout our dog would yelp and lay down with certain movements. Vet thought it was her back. Yep. Course of oral steroids and all better.

I swear something was in the water.....

glenandgerry profile image
glenandgerry in reply to Sane1

You are so lucky Donna that the injections worked for you. My husband had about 6 spinal injections over 5 years but they didn't ever really work. He ended up having a back op for spinal stenosis 18 months ago but that didn't work either. If anything the pain is now worse due to scar tissue.

Sane1 profile image
Sane1 in reply to glenandgerry

So sorry your husband is in so much pain after all that. I know others for whom the surgery hasn’t worked. I pray he has/can find something that helps his pain.

glenandgerry profile image
glenandgerry in reply to Sane1

Thank you so much

So a question to those of you who suggest ruling out other causes: even though my pain does respond to C/L, initially completely, and less as time goes on and only to increasing doses which has a limit, it can still be due to something other than PD?

Sane1 profile image
Sane1 in reply to rebtar

Just my two cents. I'm thinking that just because your pain is relieved by the analgesic effects of your C/L does not necessarily mean your pain stems from PD. Their are studies trying to show that Levodopa can also be useful for non PD people with chronic radicular pain. Thus maybe like other pain relievers they time out and one may get tolerant to the dosage over time.

I personally prefer to know the cause of my pain. That way if it can be fixed I can be on my way to mending. Medicating my pain without knowing the cause of the pain is like throwing a bandaid over the problem. I've worked in the medical field for years and differential diagnoses is just ingrained. Getting it checked out may help. It can't hurt.

On the other hand you know your body best.

Have you asked your Neuro his opinion?

rebtar profile image
rebtar in reply to Sane1

Trying to get a phone appt with neuro. And thanks for that clarification. That is very helpful. I had no idea what des C/L might be a pain reliever,

Sane1 profile image
Sane1 in reply to rebtar

It seems that the analgesic responses to dopaminergic drugs are different for people with PD and non PD people with chronic pain.

I found this article interesting although I won't pretend to have understood all the biochemical and physiological underpinnings.

mdpi.com/2076-3425/10/10/70...

Yes, I wondered whether my similar sounding pain was or wasnt responding to C/L. Have you tried naproxen? Your pain sounds very much like mine and when gabapentin did nothing for it, my spinal stenosis specialist prescribed Naproxen, which tended to get rid of it completely. You might like to check whether it is caused by some nerve in the spine being pinched by some deformation of the vertebrae.

No, I try to stay away from NSAIDs. However I was just doing some more online research and find that pain on the outside of the ankle (the location of my pain seems to correspond to peroneal tendon), can be caused by glute weakness. So I'll keep working on that and see if it helps.

Could you have a torn muscle or tissues?I had an MRI on Friday looking for cause of pain and difficulty getting in and out of my car and getting dressed. Won't know results until Tuesday. I hope you find some answers.

rebtar profile image
rebtar in reply to Smittybear7

No, i doubt that. It’s been gradually getting worse for 1 1/2 years or so and responds to increasing c/l.

Rebtar, I hate hearing you're in so much pain. Please try the below to rule some basic things out. It's because you've stated that B1 worsens your pain which is very unusual so I'm thinking you may be running very deficient in nutrients and B1 may be pushing that further. I know you've tried PE B-complex and already supplementing Mg, so let's see if the below helps at all. It most likely won't hurt anything.

Try the below (or any other low sugar option). Use a half tablet in a tall glass of water.

amazon.com/gp/product/B01AM...

Also add 1/8 tsp of the following to the electrolyte drink. Drink the mixture 2-3 times a day well spaced out. Also monitor your BP if possible - increase salt if it runs low.

amazon.com/NOW-Potassium-Ch...

Add the below Boron or any other brand you prefer. Once a day.

amazon.com/Pure-Encapsulati...

As Art_lover45 mentioned, I'm also a fan of serrapeptase and I've written about it several times before. However, I'm not sure if it will help your condition with your description of not experiencing pain at night, but it's still worth giving it a try. It does require a high dose to notice the anti-inflammatory benefit.

However, start with electrolyte + K + Boron and see if that helps at all first, monitoring for a few weeks.

To get a clearer picture than a blind shot, I highly recommend a hair mineral analysis, 36 Elements Including Boron. You can also get it through a local holistic Dr and the lab test may cost less.

evenbetternow.com/proddetai...

To those of you who suggested it might not be PD related pain, thank you. I had a consult with my neuro (MDS) and she said the same. No other symptoms have progressed in any significant way, she said it would be highly unusual for one symptom to progress rapidly and other to stay the same. So she said to get checked by a pain specialist and/or spine orthopedist. I've got the appts. this week. Today I made sure to not sit for long, move around, not overdo stretching or any exercise that exacerbates the pain, not sit on the couch (too squishy!) etc. Much less pain. So likely spinal or impinged nerve... hopefully not too complicated to get relief but I'm relieved it's not a progression of PD!

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