I am new on here. Treating with herbal options and as much physical activity and yoga, am on propranolol for tremors. Why am i experiencing muscle rigidity and severe burning in my feet, lower back pain?
Any suggestions on sleep issues without utilizing sleeping pills?
The only med I found to eliminate pain was sinemet. I was diagnosed at 52 after spending 2 years in excruciating pain. I also use cbd oil. You could try that before another synthetic drug. It's all natural and has no thc. Hope that helps. Exercise as long as you can do if is the best. Good luck!! Judy
Thank you Judy. I totally agree with the exercise aspect. Has been a challenge lately. I will try the cbd oil for sure. I appreciate your advice.
Good luck to you too.
Rob
Thank you
The following is what i have picked up in the last 11 years dealing with my Parkinson's (PD). Propranolol I have read is used when all other Parkinson's meds do not work on tremors. Carbidopa-levodopa (C/L) and along with dopamine agonist will help with "rigidity and severe burning in my feet, lower back pain" and tremor. If they do not work for tremor then i believe propranolol can be taken along with them.
The key is to try different combos of drugs (with your DR. help) until you find the right one.
As for sleep have not found a solution yet just deal with it with naps.
Five other things you can do for PD is exercise, exercise, exercise, exercise, and exercise.
I am 62, 11 years with PD meds 1 50/200 er C/L and 1 25/100 C/L every 4 hours at 5 am, 11 am, 1 pm, 5 pm, 9 pm. 1 azilex, 1 6 mg requip 24 hour and fish oil.
I do crossfit 5 or 6 days a week for exercise. I started 18 months ago.
The hardest work out i have done is called Murf which is as follows I did it in 56 minutes after i finished i ran 3 more miles to help the next class.
Run 1 mile
100 pull ups
200 push ups
300 full squats
run another mile
Good luck
Bailey,
Thank you so much for the advice. I do agree with the exercising. Until a year ago I worked out three to four times a week with a personal trainer, and it was great. He pushed me beyond my own expectations.
Now I am finding it so difficult to make it our of bed in the early a.m. and complete any form of exercise. May I ask, do you experience any issues with your feet burning and being painful?
I was an avid runner in my younger years, and a swimmer. I have a fantastic YMCA and my annual membership...I have just reached a point where physically I feel unable to exert the energy, plus work. I am a full time Real Estate Broker.
I know a positive outlook is important as well. I am so tired all the time, and not used to that. I have my alarm set for 5:30 a.m. tomorrow and come heck or high water I will make it to the gym! Gotta break the cycle of no working out.
Thanks again, and best regards,
Rob
I read up on propranolol and it appears that it could be causing you to be tired it is one of the most common side affects of it. My advice is to contact your Doctor and start on some C/L (it is called the gold standard for PD). At 54 you are very young and have a good chance to stop the progress of your PD. It takes hard work and dedication but is doable. I do not have tremor but every thing else. I am retied and that helps by reducing stress.
About my feet, I do have burning and pain off and on during the day but nothing i can't deal with.
What state do you live in.
I am trying to promote Crossfit for PD people (i have no connection with Crossfit it just works for me and i hope it will work for you)
I am in NC. The propranolol I have actually reduced the amount the DR had me on as it was making me lethargic. It also can reduce your heart rate. I was scheduled to see my Neurologist at Duke today, but of course his office called last Thursday and cancelled. I intended to discuss options to replace the propranolol.
Thank you so much for your help and advice. A dear friend who is an herbalist has advised me to daily state out loud that I do not have Parkinson's .....mind over matter. Her Grandfather had it for years and she treated his symptoms with herbal options.
I will speak with the DR about c/l and go from there. I sincerely appreciate your help.
Rob
I admire your courage and perseverance. Exercise is critical, but I don't know of any herb that is a substitute for dopamine. PD can be a difficult diagnosis even for one well trained. Rock Steady Boxing rocksteadyboxing.org has helped thousands since it opened ten years ago, and now has 200 affiliated gyms including NC. It changed my life and facilitated my becoming an avid runner at 65. I also take a low dose of trazadone for sleep. Have you been checked for sleep apnea?
Thank you, yes on the sleep apnea, and use a cpap....I must research the rocksteadyboxing.org....supposedly will be in Cary area 7-9-16.
Appreciate your comment
Wonder what herbals she used to treat grandfather? Did he have tremors?
Bailey Lol yr mind kind of guy you'd fit right in here in Queensland Australia, the Texas of this nation
Hi I was diagnosed at 48 6 years ago I have no tremor but muscle and joint rigidity. I ride and muck out my horses every day the exercise is a must break the cycle you'll begin to see difference. I also try to be really positive and not think about my pd it all helps good luck.
I agree with beang's comments. I, too, go to Rock Steady boxing & it has helped me more than anything. I also think C/L, Azilect & plenty of antioxidants help.
Hi Robsouthern. Welcome to the forum! Have a look at my website - reverseparkinsons.net - in which you will find over 400 interesting articles on ways to help overcome and/or deal with Pd. You may want to read my book as well, which you will find on the website. I have had Pd symptoms for 53 years now, but I was only diagnosed in 1992, 24 years ago. Since then I have managed to come off all medication in 2002 and have been medication-free since then.
Good luck
John
Thanks John, what is the title of your book? I appreciate your input!
Rob
Reverse Parkinson's Disease.
John
John,
I have tried signing in for your news letter online, and for some reason, the page freezes,does not accept my email information etc.....
did the same when I tried ordering your book...
Thanks,
Rob
Hi Rob. I will look int i. Can you email me please at johnpepper@telkomsa.net.
Thanks
John
I will definitely check out your site.
John you may be the real deal I just dont know. Was your PD originally a misdiagnosis? Misdiagnosis in PD is as high as 20%
Im sceptical of people who make money off their miracle cure. I would just share it for free.
We all benefit from exercise far more than most Neuros understand.
We all benefit from a positive mindset. IMHO about a 50% reduction in symptoms
Hi. It cost me a large amount of money to set up a website and keep it up-to-date. I have had to upgrade my computer three times in order to keep pace with technology and the cost of maintaining my computer and paying people to help me solve problems, has been phenomenal. They don't want to work for nothing!
The little bit of money I make from selling books has nowhere near covered those costs. I am a retired person of 83 years of age, living in a country that does not have a pension scheme and all my savings have been used up providing the training I do, all over the world, and all the emails I answer on a daily basis. When I die, I will no longer be able to do all this and it won't cover all those costs o its own, so it will die out.
My aim is to get scientists to do a study on exercise and compare the results of any other form of exercise with fast walking and see how the symptoms of those taking part compare with each other.
If fast walking works better than boxing, or dancing or any other exercise then we will know, in practice, what exercise works best, or even, '"Does any exercise slow down the progression of Pd?"
Why could we not have done this 15 years ago?
Every bit of your book is available FREE online. Is your book available on Amazon?
Hi. It was available on Amazon but all the copies printed so far were unreadable. The e-Book version was perfect but the printed version was not. They cannot sort out the problem and I am currently working on it.
My website has all the salient facts on what I have been doing, free of charge. The human story is in the book.
Thanks for asking!
I will watch for a corrected hard copy
Thanks for the reply. Refreshing.
PD is like a hurdle race. You have run as fast as you can, and when you reach the first hurdle have as many Doctors, family ,Friends that can get you over that hurdle. Then race to the next hurdle.
Thanks for the information, and I agree....definitely hurdles!!
I am in the RTP, NC area also. Several people in this forum have recommended RockSteady Boxing. Coincidentally I just learned last week it is coming to Cary. There is a Kickoff meeting scheduled Saturday July 9th. The contact info I have is Greg Geheb 603 494-0000.
Thank you for sharing. Will reach out to Greg!
Have left Greg a message, no return call. Do you know what time the kickoff meeting is and if it is on Kildare Farm location. Pulled that from website. Thanks again.
welcome Robsouthern,
I don't have much to add that the other members haven't told you except that I too take Propranolol for anxiety and irregular heartbeat, the best medicine that I have found for my tremor problem is Amantadine, which is an anti-viral drug that they found also works on some ppl with tremors. As mentioned it is all about trial and error and finding a routine that works for you. The longer you can be active the better. This is truly a great site with alot of wonderful ppl. So you are in the right place.
Best wishes, Darkflower
Thank you Darkflower. I appreciate your comments and advice!
robsouthern,
Guess you forgot..............
Sorry forgot what? I simply replied to a post where I thought WifeyifOarky was being very rude to you.
No worries. You have always been very helpful since my joining. Others rather nasty. At any rate I just closed my account. I wish you happiness and the best
Walk tall and be strong.
Rob
robsouthern, please don't do that. I will feel awful if u do.
I am finding reflexology helpful for sleep.
Sleep, or rather, sleeplessness, is the bane of my existence. However, I'm doing a little better the past couple days taking melatonin (for sale in the health food store) at bed time and magnesium a couple hours before bedtime.
Propranolol never worked for me. So far, nothing has (tremorwise, that is).
Hi Beckey. Not sure if you've ever tried Ibuprofen PM, but I take it occasionally when I haven't slept good for awhile. I've tried Aleve PM, Melatonin, etc. & Ibuprofen PM is the only thing that helps.
Stick with ibuprofen for a number of reasons. First of all,
Exacerbation of idiopathic Parkinson's disease by naproxen
" Shortly after starting naproxen treatment she became immobile and more tremulous, subsequently requiring admission to hospital. Examination showed generalised rigidity and bradykinesia and a severe bilateral resting tremor. "
bmj.com/content/311/7002/422.3
Secondly,
Study shows ibuprofen may reduce risk of developing Parkinson’s Disease
hsph.harvard.edu/news/press...
Finally,
15years taking Ibuprofen, Parkinson's has plateaued!
healthunlocked.com/parkinso...
Remember to advice users of ibuprofen that it can cause gastric bleeding without any warning and it might be dificult to control
Ibuprofen in sealed gel caps in liquid form is less likely to cause adverse GI effects, since when the capsule dissolves the liquid is more evenly distributed than the case with a solid pill, which may end up resting against the stomach lining while it dissolves.
Yeah, but if you are telling someone to take ibuprofen you should also tell them about the bleeding side and that there is less possibility with the gel than with the tablet
If you're referring to my reply about Ibuprofen PM to Beckey, I assume a person cannot know every possible side effect & everyone doesn't respond to meds, both prescription and/or over the counter, in the same way. I once was prescribed a common antibiotic & it affected my liver, but that was very rare. The doctors couldn't figure it out for several weeks. I believe most people on this site know to speak with their doctor before trying something new? I do appreciate you bringing that side effect up.
I to can swear for melatonin, it's OTC, started off by taking tab of 5mg 1/2 hour before my intended time of sleep, then drop down to tablets of 3mg then to tabs of 1mg. I now take it when I have had one or two consecutive days of poor sleep. NO side effect, no hangovers.
i tried melatonin with little success, might just try again...thank you
The pills I got are 3 mg and I was loathe to take more than one since I had heard you can take too much melatonin. But if you took 5 mg with no unpleasant effects I may try that too. I definitely feel sleepy when I take it, but not enough to overcome the #$%& RLS through the night.
It appears to me that you had already decided on a non-medicinal exercise wellness regime long before you asked the question. You appear also to have been successful at delaying your need for conventional medication by using exercise, and the use of natural herbs and such as any elite thinking person who is well informed and thinks above the common rabble, would do. Good for you.
Now tell me, please. Why did you ask the question You did not really want an answer from us did you? You see we do not prescribe, we would have to be very foolish indeed and why would you listen to a bunch of quakes on the internet. So who diagnosed that you had PD and what was their reasoning? Have you seen a professional, educated , specialist who has spent years associated with movement disorder diseases ?
I asked the question regarding my feet because the issue is new to me. Simply seeking advice from others dealing with PD. To answer your question, three different Neurologists have diagnosed the PD. Yes I see a movement specialist. Thanks for your input.
The idea that carbidopa/levodopa (C/L) causes intolerance after some years has been debunked by a recent study. The most difficult symptoms of PD are caused by a lack of dopamine, which is exactly what C/L remedies. So do yourself a favor and give it a try. Use the CR (controlled release) or ER (extended release) form. The immediate release versions are unsatisfactory since you get unevenly medicated.
Thank you
Hey robsouthern, How are you doing? I have been reading about coenzyme Q10, which is meant to boost your energy. However, it is a bit expensive for the amount you have to take in a day... 1200mg! Also I've been doing oil pulling with coconut oil and eating about 3 spoons of it per day. It works fine when I'm at home, but I realise how depleted my energy is when I stay with my daughter and grandchildren. It gets more difficult every time...
Doing ok. I am using coq10 lethicin and a variety of supplements. I have noticed the burning in my feet is not as intense. One day at a time!!!
Seeking a 2nd opinion Movement Disorder
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