our daughter has been diagnosed with PD since 2013. For now she has extreme leg pain, down into her ankles. None of the muscle creams have helped, takes Vit. D, C, has taken COQ10, and started out with some B1 therapy. Nothing seems to work. Anyone have this problem or has any suggestions. When I’m with her she always wants me to rub her ankles and calves.
my husband has Parkinson’s also, he is 85 and our daughter is 55. He was diagnosed 2 years ago but has had an essential tremor for about 15 years. He is doing fairly well, but doesn’t get around very fast…..slow like a turtle……I think he has let PD define him and can’t get past that. I try my best to be upbeat and positive in taking care of him. He has a bit of dementia, some days worse than others.
But we keep on keeping on…..hoping for a cure. And praying a lot.
Thanks for any suggestions for leg pain in advance. 🤗🌻👍🏼
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Williemom
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thank you for suggestion. The PD doc says her meds are aok, but maybe an adjustment is in order. However, last year she was having some really bad symptoms of overdose of Sinemet. Bad hallucinations, not sleeping, delusions, so bad after two visits to ER she was sent to a drug rehab center where she stayed for a week. Locked in a room, e except for group therapy. But as bad as that was, some good came from it by the psychologist deciding she was getting too much Sinemet and having serotonin syndrome. She has done much better since then, except for the leg pain. She has a lot of anxiety too and now seeing a psychiatrist.
Lag lag suggested EmergenC which she used to take. I will suggest that again. Thank you both.
I have had good luck with Emergen C. A few years ago I had horrible pain in both thighs and the groin. A friend of a friend told me about it, I tried it and after 3 weeks the pain was gone and it hasn't come back. I take it nearly every day now. It's worth a try. 🥊
I use compression stockings, which help my leg pain, that, also, goes along with my peripheral neuropathy - all, seemingly, related to Parkinson’s! I’m older, and have had Parkinson’s for at least 10 years, if not longer! I refuse to let PD take over, and push myself, each day, to overcome the prevailing slowness, one gets with having PD! It’s challenging, but one can have a life, living with PD! Of course, having the right dose of Sinemet, is essential to my getting around better etc. Good luck to you, having 2 people in the family, with PD! That has to be tough!
Can you describe the pain? I have leg pain also, but it's more like a sunburn than cramping. It's been diagnosed as peripheral neuropathy and isn't alleviated or exacerbated by my PD medications (unlike dystonia).
Daughter says it is just pain….no burning or tingling. Tried all the products for muscle pain like Theroworkx, Aleve muscle rub, Biofreeze, voltaren, aspercreme…..nothing relieves it. Bless her heart….and yours and others who deal with this side effect of PD. My husband says he has new sympathy for PWP since he is experiencing side effects besides the tremors and shaking that comes with the diagnosis. He will be 85 in October and our daughter is 55. My husbands brother passed in 2017…..had PD but passed from severe pneumonia…..sadly. He had only been diagnosed 5 years but also had heart trouble, diabetes, and was recovering from removal of a tumor on his pancreas…..lost a lot of weight and was not able to overcome the pneumonia.
Oops, sorry, I didn’t mean to give you our family’s health history. Guess I just have it on my mind worrying over my husband and daughter. God bless you and hubby.❤️
I get leg cramps and restless legs at night if I skip my magnesium. I take mag malate in the morning, threonate in the afternoon, and glycinate at bedtime (about 500 mg total each day).
I would look at the Palmitoylethanolamide or “PEA” thread of today and yesterday (specifically the ultra micronised kind) and at Magnesium L-threonate. Google both. Best.
just be aware PEA dies interact with some meds. You won’t find it on interaction checkers. I found out symptomatically. PEA has oral and cream presentations. Vitalus is a good brand .
I’ve read a fair few articles/ research papers on this stuff. PEA is even produced by the body. I’ve clearly got to look harder after your post but it seems to have one of the safest profiles of any compound out there. It’s found in many foods. Long term use needs more evaluation but I’ve seen little to suggest there’s a single problem with it and there are 57+ research papers on human use of PEA…
This from one article:
Safety and Effectiveness Over Time
PEA is a natural substance produced by the body and found in various foods. It is not an opioid. It is not addictive. Preliminary studies indicate that PEA does not develop pharmacological tolerance or gradually lose effectiveness over time as occurs with opioids. It has been shown to be safe for patients with no reported serious side effects and it is considered to lack acute or chronic toxicity. It does not interfere with other medication therapies nor does it trigger drug-drug interactions. There are no known contraindications for PEA, and patients with reduced kidney and liver function can be treated with PEA, as its metabolism is localized and cellular and independent of kidney and liver functions. As with many medications, the safety with long term use over 60 days has not been well studied although thete are reports in the literature of long term use with no problems identified. Based on the totality of the evidence reviewed, there is a lack of adverse effects with doses of PEA as high as 1200 mg of microPEA per day.
I take meds to help with sleep, the day after I took PEA, I was extremely groggy the next day. That tells me that it is metabolized by the same enzymes as a be or more of the sedating meds I take, and probably increases the concentration circulating.
my hubby complained about leg pain mostly in the evenings. I rub his legs with creams with lidocaine. Also his doctor suggested he take Alpha Lipoic Acid pills for neuropathy. Has helped.
Very useful information in these replies, thank you
My HWP has been suffering leg pain for about 6 years, and nothing has helped. He's presently on Fentanyl patches and magnesium spray. He does have some peripheral neuropathy. He's also had a back op for spinal stenosis but that didn't help either.
He was taking umPEA but recently stopped as he's been terribly poorly with an infection. He was also taking Emergen-c but the price here in the UK became prohibitive so he stopped that too but I've just ordered 4 months supply from Vitacost again.
so sorry your hubby is having so much pain. I’m also wondering if our daughter has some neuropathy in her calf and ankles. She’s tried the magnesium oil, and takes magnesium but might need to change the kind. I’m hearing that mag theronate is the best. And has taken the EmergenC but costly for her so she quit. I’m thinking I’ll get it for her and see if it helps. Vit C is always helpful…….
Hoping your hubby can get some relief. I have back issues myself and have had my first steroid injection but it hasn’t helped my pain. Doc says it’s arthritis and degenerative disc issues. Taking Aleve right now and an occasional muscle relaxer. Nothing really helps. It’s “tough” to get old!
I take oral magnesium daily and use magnesium oil for flair ups. I also suffer leg pain behind the knee down to my foot from sciatica. I get much relief from bi-monthly acupuncture.
If her pain is due to muscle cramps, this might help I had severe night time leg cramps. Now I rarely get leg cramps since I started taking 500 mg of magnesium citrate and 10 mg Baclofen (prescription) at bed time. Magnesium is also a natural laxative - so you should have her start start with 250 mg. If her pain is throughout the day, she could take half of these pills at bedtime and half about 12 hours later.
My late husband (as of two weeks ago), diagnosed with PD in 2004 at age 57, had such severe leg pain in the early days of taking sinemet that he was getting suicidal. His PD doctor and local doctor were pretty useless. The first told him PD doesn't cause pain and he'd just have to live with it, the latter said he had 50 different pain killers he could try, but after the first three didn't work, he also told my husband he'd just have to live with his pain.
After seeing a new local lady doctor about this pain, she approached the best PD specialist she could find and arranged for my husband to see him. The specialist, Dr Lennox, knew immediately what the problem was when he saw my husband writhing and shaking his legs in pain. He said it was being caused by the sinemet, too much synthetic levodopa being absorbed too quickly followed by not enough.
Dr Lennox changed the sinemet to stalevo (synthetic levodopa, carbidopa and entacapone) to delay the levodopa being absorbed too quickly. He also added gabapentin (a strong pain killer), and two medications to take at night when the leg pain was the worst - pramipexole, and amitriptyline. All of this medication soon took away my husband's leg pain, much to his relief. There were side effects, but nothing worse than the pain my husband had been suffering. Hopefully this same regime could help your daughter.
I would like to add that around 10+ years later when the stalevo lost all its effectiveness (as standard PD meds tend to do), we experimented with replacing it with Mucuna Pruriens powder (a ground up bean that contains natural levodopa), which got him "on" quicker and lasted longer than stalevo ever did, and without the terrible side effects. For his last 7 years, Mucuna allowed my husband to cut back on all of the other medication he was taking, while keeping him more mobile and happier. I have written extensively about this on this website.
The last year before he passed away, he was only taking Mucuna once every 3 or 4 hours during the day, plus 2 Stalevo and 2 gabapentin a day (down from 5 of each daily), and 1 pramipexole every third night instead of every night, and no amitriptyline at all. I wish we had known more about Mucuna from the beginning because I believe it might have kept him pain-free and therefore free of the side effects of the medication he wouldn't have taken to relieve that pain. However, once he had experienced such painful cramp-like leg pain initially from the sinemet, it took him years to feel brave enough to experiment with cutting back on all the other medication that had put a stop to the pain.
I have firm faith in the ability of Mucuna to treat the stiffness and rigidity of Parkinson's Disease without doing any harm. In fact, being a natural plant based medication, it contains beneficial nutrients as well as natural, easily absorbed levodopa. It has been used by Ayurvedic doctors to treat movement disorders for centuries. I hope this helps others.
i kooked online at mucuna and found so many different kinds. Do you have any recommendations? Thank you for your post and Im so very sorry about your husband.
I recommend simply the ground up mucuna bean (aka velvet bean), untreated, not heated, not an extraction, a tablet or capsule, just as close to natural as possible. You can easily adjust the dosage with the powder. The powder is grey in colour. If you see brown mucuna powder it has probably been 'cooked', destroying some or all of the beneficial nutrients. My husband once tried cheap cream-coloured 'mucuna' from a Chinese supplier, but it was not only completely ineffective, it made him nauseous. So I'd stick to the grey powder.
Here in the UK I usually bought mucuna powder (in kilo bags) from an excellent online supplier called 'Detox Your World'. Their prices are competitive and the mucuna they sell is consistently top quality. It is sourced from India, where Ayurvedic medicine has its roots.
We experimented with quantities until we found that 1 tablespoon of the powder (mixed in water) would usually get my husband 'on' in only 5-10 minutes and would keep him on for at least 3 to 4 hours. He never minded the taste of mucuna - psychologically he associated it with regaining mobility. However, toward the end of his life, as dementia began to set in, he much preferred the mucuna powder to be mixed with pineapple juice. You could try mixing it with any juice. I have heard it also goes well with chocolate.
oh my! So sorry about losing your dearly beloved husband.
I thank you for the detailed post. I’m going to tell her all this and see if her Neuro has the same reaction you are talking about. At present she doesn’t seem to want to try anything different but the Sinemet. She takes Sinemet every 2 and. A half hours. Takes about 30 minutes to work so she basically has only 2 hours of on time. I think she might need more vitamin D and some Emergen C . She takes magnesium and was taking COQ10 …..I haven’t been in charge of her meds in a while so I’m not sure about some of it. I know she takes Seroquel at night for the bad dreams but lately she is having terrible nightmares where she screams out and th either night I was to,d she picked up a plastic glass from her bedside table and threw against the wall …..don’t know what she was dreaming about, but this has gotten more frequent. She has started taking Pristiq for anxiety and I think she’s taking too much cause some of her actions have started since beginning this med. But I’m not a doctor. I just read a lot and research and ask questions from the dear people on this website who might experience the same things and have good suggestions.
Thank you and once again I am so sorry about your dear husband.
Thank you. A bad fall in January broke his hip, and complications from the hip replacement surgery seemed to accelerate his decline with PD, especially because doctors wouldn't give him his Mucuna for a few months (he was in hospital nearly 6 months). At least we gained a lot of experience from all his years with PD and using Mucuna for the last 7 years. I just hope it might help someone else if I share that experience whenever I can. My heart goes out to you and your daughter. I hope she can find a happy balance.
Bless your heart. Thank you for sharing. I am certainly going to suggest the Mucuna….we’ve heard of this before from several group meetings we used to go to. All who were using it had good things to say about it.
My brother-in-law who had PD (7 years ) passed after having pancreas cancer surgery. Wasn’t strong enough to recover and developed pneumonia. I pray neither my daughter nor my husband have to go to the hospital. My husband is having more trouble with dementia and stiffness than anything right now. But he is 85 so some of this is to be expected I guess.
Thank you again for your sharing. I appreciate it so much. 😍
Thank you so much. Makes you wonder why doctors in the states don't recommend Mucuna first before Sinemet. I'm going to talk with my neurologist about it. Thank yo again for taking the time to share your experience.
I don't know of any standard medical doctor in the US or UK who would recommend Mucuna, because it isn't a patentable man-made medicine. Doctors are trained by the pharmaceutical industry to only use pharmaceutical treatments. They're taught that anything else is quackery. When I asked the brilliant Dr Lennox about Mucuna, he said, "Well it can't be any good or we would have heard about it". The reason there are so few studies on Mucuna is precisely because it is a natural bean plant that anyone could grow, so no one can patent it as a medicine and make loads of money from manufacturing or prescribing it. I'd be surprised to hear of many doctors being open-minded about Mucuna.
I replied earlier but don't know if it went through so I'm trying again. Forgive me if its a duplicate. Here in the states big pharma rules. We are constantly bombarded with TV ads to ask your doctor about a certain drug. I understand this is illegal in most countries.
How did your neurologist react to you using mucuna instead of sinemet?
I found a double blind research study in a reputable neurological journal which concluded that mucuna was effective more quickly than sinemet and also lasted longer. If you want me to send the reference to you, I'll be happy to. I'm not sure this site allows you to link articles.
Thank you. I would like to see that article. It certainly mirrors our experience. The neurologist my husband dealt with after he started using mucuna always said she couldn't recommend it because it was an unknown (to her). She listened but ignored our experiences with mucuna. She just kept offering various pharmaceuticals to deal with problems my husband didn't really have. He respectfully declined them all.
another question……this time about my husband. He’s been diagnosed since 2021 and is 85 yrs old on Oct. 5th. He’s currently taking Mirapex, Rivastigmine. Has some cognitive decline. Lately he’s been acting strange. He goes to sleep a lot in the chair he sits in, in the shower on the shower stool, and strangely enough when sitting on the potty. On the potty I’ve found him bent over so far that his head is almost on the floor. And trying to get him awake and up is a chore. He had some blood work done on Wednesday and I’m anxious to see if that shows any problems, like maybe with blood sugar…..any suggestions about what is going on. Is it the dementia progressing or another medical problem? I forgot to say he’s very grumpy at times. I’m doing my best to take care of him here in our home. Caregiving is hard sometimes it I’m trying to have more patience and remember that it’s not his fault it’s the “wretched disease”……
I love this website because everyone cares about someone and willing to share. No judging and it’s all done with kindness and compassion.
i have foot, ankle and lower leg cramps.... here are two things that have eliminated 99.99% of my pain... I bought both of mine, used, at craigslist... but here they are on amazon
Vibration Plate Machine (I stand on mine every day for it's 10 minute cycle) this is a really really good price (there are models that go for THOUSANDS)
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