Lately I’ve had really sore feet, especially on my more affected side. After exercise, and in the evening especially. Also pain in my glutes, tightness in my thighs, sore lower back.
Im assuming this is muscle “rigidity”. The CL 25/100 three times a day completely controls my tremor and slowness, and the toe curling I had before starting CL is also gone on this dose.
Not sure if there’s anything to be done since all the symptoms that could interfere with function are well controlled, I don’t want to increase dose.
I take magnesium. B1 seems to make this stiffness worse.
Suggestions?
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I take magnesium glycinate I think it’s designs for health brand, around 600- 800 mg per day divided, on empty stomach. I have occasionally used mag oil but it didn’t seem to help so maybe I’ll try that more.
On the B1, my latest attempt was 100mg daily and it still made me stiffer. I’ve tried 4K, 2k, 1k, 500, and now 100.
It never seemed to make a difference on my symptoms, All pretty well controlled with the CL except now this muscle soreness and stiffness which has increased over the past year and which isn’t controlled.
There is one forum member who has recently reported that they are getting a very good response to B-1 using only 25 to 50 mg per day. This is the lowest effective dose reported on this forum to date, but overall, it seems that the reported effective dose of thiamine has declined considerably on this forum over the past year and a half. They did not explain how they are achieving that dose though, but there are both 25 mg and 50 mg B-1 capsules available from major supplement suppliers on Amazon. I imagine taking a 100 mg capsule every other day may be one way to reach an equivalent 50 mg dose per day. I have a question for you regarding B-1. When you stop taking B-1, how long does it take for the B-1 associated stiffness to go away?
Regarding the magnesium glycinate, this is considered to be a very absorbable form of magnesium that does not seem to cause diarrhea, but your dose seems a bit high at 600~800 mg per day which ultimately may become problematic. The daily allowance for women is only 310~320 mg per day. Below is a list of potential side effects from too much magnesium and please keep in mind that you also get magnesium from food and certain supplements when considering your total daily intake of magnesium. Magnesium is also potentially considered to have synergy with thiamine.
lethargy
facial flushing
diarrhea
nausea
stomach cramps
vomiting
depression
muscle weakness
an irregular heartbeat
low blood pressure
urine retention
breathing difficulties
cardiac arrest
Btw, muscle stiffness is a symptom of C/L and B-1 has been known to have synergy with C/L as reported by Dr. C from his clinical practice patients as well as on this forum from members who have reported being able to significantly lower their C/L dose shortly after adding B-1 to their regimen.
It's been taking a couple of days for the stiffness to get better after stopping B1, however now I'm feeling stiff and sore without it so that makes things less clear.
I'll check into the mag dose with my doctor -- she prescribed that amount.
I'll try a lower dose of B1.
I just checked the B complex I take and it has 50mg of B1. I just switched from a different brand that had 100mg of B1. So I've actually been getting more than I thought.
Please keep us posted on how you do with your B-1 dosing. It does seem confusing with the additional B-1 sources and then the renewed muscle stiffness. Is it possible that B-1 is increasing the effect of the C/L?
I have never heard of B1 causing stiffness my husband receives a daily injection everyday low dose between 60 and 70 ml he is unable to tell me how he feels so I read your comment with interest are you saying that thiamine causes stiffness?
Yes, according to Dr. Costantini, a dose that is slightly high can cause stiffness in different areas such as the lower back, legs or other areas. Here is Q&A #55 from the Thiamine / HDT / B-1 FAQ page :
55. A forum member recently asked Dr. Costantini, " Have you ever seen any side effects in the form of back and leg pain and muscle tension?"
A. Yes, when the dose is slightly excessive compared to the needs of the patient.
It should also be noted that some forum members thought they were having this problem from B-1, but the problems turned out to be caused by other things such as spinal stenosis which appears to be fairly common in PWPs.
Oh wow thank you so much for looking this up and sending it to me I'm going to really rethink this dose and re-read all these questions thank you again ! According to diagnosis hubby has an atypical parkinsonism --which one is still in question.
dr. Costantini told me that atypical couldn't take very high doses but he's up to 70 mL/ day now( injection) and if I looked at one of those questions correctly that's almost or right at the highest dose so maybe he is getting too much. always more research and thought to put into this whole thing. its 24/7 very consuming and exhausting. I also feel a lot of guilt because what if I don't do the right thing but I guess the best way to look at it is I'm doing the best I can with all the resources I have.
I’ll get checked out by my doc. I have been getting cramps in my glutes after exercise. However my guess is it’s PD related as my affected side is worse.
I had similar problems, three stints in artery seems to have helped , no indication of heart problems until I collapsed and got the stints 12 hrs later. Lucky
I have noticed I have a tendency to hold my leg on the affected side a bit differently under certain conditions. I also have a sore spot on the bottom of my foot on the affected side. It is not due to dystonia – I would know it if it were. I believe there is something biomechanical going on relating to using that foot a bit differently.
Biomechanical problems due to Parkinson's are both commonplace and unappreciated. I wrote about such a problem with my vastus medialis muscle on the unaffected side here:
Try some PEA. It’s an anti inflammatory. Takes a while to work but is great for this type of pain. Give it 6 to 12 weeks. It’s improved my stiffness no end - I can turn in bed, get up easily in the morning etc
I have very similar symptoms; in fact one of the first symptoms I had was dystonia in my foot on the affected side, that would really hurt in the evenings. Massage helps some but only temporarily. These days I have hip, pelvis, low back, abdominal and thigh pain every day, especially when walking or standing, that isn’t helped by anything I’ve tried, including C/L and Thiamine. The only comfort is sitting; hot tub feels good as I use it but doesn’t resolve anything.
I’ve resigned myself to have pain and just work around it as best I can. PD sucks.
One of my first symptoms was also foot dystonia, which resolved with CL. Oddly, that hasn’t been a problem since, the foot pain Im having now is more the top of the foot (but inside, if that makes sense), it feels like muscles and connective tissue perhaps. Not contract I’ve like before. So I’m not sure it’s dystonia but it may be?
Foot pain is a tricky one. We often face this question (well I too have times when I cannot walk because of foot pain). It can also be set off as a DBS side effect. Neurologists often go down the Lyrica route (yet more meds). Often with little or no result,. Magnesium is only partially effective and don't get me started on B1, which has become a "fad" with little research evidence. The whole thing started from research done by a friend of mine who says himeself that it had no control group and was done "in a very basic manor." I am curious ... If B1 was so effective then ALL neurologists would prescribe it (they don't, well not in th e45 countries we work in.). YES IT CAN HELP (especially if you have a low level). Only 20% of our patients have benefits. The doctor quoted above.. is not supported by the Neurological society and he has not been well rececently but his replacement has been continuing to ride the wave and cash. (I will get sarcastic comments but forgive me for asking for at least 3 stage 3 research projects that back the use of Vitamin B!. Vitamin D YES loads of research on that. BUT if B1 it helps you . A DEFINATE MUST, keep taking it, but don't exagerate. I have nothing against it. Anyhow I digress. and having lamented the lack of research for B1, I have tried everything. Accupuncture (again not supported by research), Vitamins (including B1, B6 and B12). BUT relief was found in medical cannabis. Legally prescribed by doctors here and given the complexity of the Many chemicals involved, It took time. It also improved sleep, increased and aided energy. I repeat, if anything works for you, with or without reseach. CARRY ON. But be careful about recommending supplements and medicines, not supported by research. (By the way, Cannabis IS supported by resaerch for acute pain, Multiple schlerosis and other. IT is not supported by research for Parkinson Itself.
They have been going begging for funding for a proper double-blind randomized controlled phase 3 trial for thiamine but have been unable to get funded because there is no money in it. So we must make do with the information that is available and decide on that basis. This is where a risk-benefit analysis comes in. The risks involved with thiamine are insignificant. By comparison, the risks of approved dopamine agonists are quite significant.
I would and will if I can. But running a major centre that operates in 45 countries and being a member of the European Parkinson Diseaese Association, means I am a little distracted. Your are welcome to write to me at the centre.
Reed, what do you think of b3 niacin and in other forms in practical use? Do you know of cases that benefit from it? About b1, IMO the b1 enjoys the most powerful advertising in the world: word of mouth from person to person and nothing else. This should make us think, why do people pass on word of mouth that is not working and not recommended by any neurologist? it should be the other way around.
I’ve had somewhat similar problems. Almost six years since diagnosed. Over a year ago I experienced dystonia while driving to a softball game in the morning around 8:30 My toes were pointed in different directions and cramped pain. So I took my dose and 30 minutes later back to normal. Fast forward to 2 months ago I still get the toe thing going but now it’s locking in when the dose is wearing off not just the mornings. At the same time I noticed a slight hot spot of pain in the affected side of buttock when( you guessed it) playing softball but would go away soon afterwards. Now just this week the dystonia has moved from toes to calf muscle extremely painful and to make things worse this is happening every 2.5 hours with the L/C taking about 30 minutes to kick in. Also the buttocks little hot spot exploded about 2 weeks ago when exercising so now in physical therapy with a great deal of pain starting near SI joint to bottom of my glute however the c/l doesn’t seem to any effect on that that issue. Needless to say I don’t sleep nights lately I do 1.5 hour naps. The last two weeks have tremendously difficult. I have a call in to neurologist, although when the toe stuff was getting more frequent he me put on artane which I didn’t care made me really spacey and just over all lousy so I discontinued. Any thoughts or ideas would be great. Thanks
Similar issues and experiences as many of your posts. Dystonia in one foot was one of my symptoms over a year prior to getting diagnosed. It would kick in around 1/2 a mile in my walks. I'd stop and stretch and struggle to keep walking. My internist showed me how to stretch my calf! (i.e. did not get it).
Dystonia controlled by Rytary (C/L time release) but overall pain is not. Right now it's been my lower back that's the worst. May last for days or weeks. But every part of my body pretty much hurts at varying levels of pain and stiffness all the time. I read with interest the post on cholesterol build-up in your legs and feet, as I also have calf tingling and numbing no doctor has a diagnosis for. However, my blood cholesterol is only slightly high and I've had for other reasons a total heart work-up and everything checks out.
Massage helps, acupuncture helps, the chiropractor helps, but I don't have the time to attend to all of them as often as is most helpful, which would be weekly. I've also found I do best on 50 mg B1 daily; I take a multi with 100 mg every other day. I've also tried magnesium cream and CBD lotions; not sure how effective either is. I wake up every hour or two all night long because of body discomfort and inability to get comfortable. Marijuana not legal in my state, but to be honest didn't like it in my teens and have no desire to try it again now.
Pain is something I can tolerate to a certain extent; there are worse symptoms.
great conversation.....i just want to add, i was dx with parkinsons and rheumatoid arthritis basically at the same time. my neurologist sent me to a neurologist who specializes in neuropathies. my lower legs and both feet had been numb for several years. he said it was the ra. i was treated with no positive results. am being treated now with humira and the pain and numbness is half gone. i am surprised , happy - i am not able to tell what pain and stiffness comes from which problem. l have lidocaine pain patches that i occ put on my back, legs and ankles. relief is immediate and long lasting. hope this helps someone.
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