Does anyone have a good remedy for severe rigidity? I’m not on pharmaceuticals yet (trying to hold off as long as possible) and lately the pain and discomfort from leg and arm rigidity is off the charts. I’ve tried CBD, Magnesium capsules and Magnesium oil, with no benefit. Is there anything else you’ve tried that gives some relief?
Rigidity Relief - Is it Possible? - Cure Parkinson's
Rigidity Relief - Is it Possible?
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gigiwillms
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so far just Levadopa/carbadopa and exercise
try belladonna extract
Emergen C works pretty good for me.
B1 high dose thiamine. Write to Dr.C
1000mg 2 times per day of B1 thiamin HCL has worked wonders for me. Deep muscle massage therapy was also helpful but expensive and shortlisting.
Just wondered why you are trying to hold off as long as possible from medication? As far as I know it isn’t the advice any more . Surely if you are in pain your quality of life cannot be good , taking levadopa will help with rigidity, once you feel good and can exercise, aerobic , strength and core exercises will help with all aspects of mobility especially balance. Vit b 1 has also proven to be really beneficial to my husband. Feel free to message 😀😀
Thank you for the info. I'm a person who gets side effects. When I was first diagnosed four years ago I went on a dopamine agonist for two months and it made me feel terrible. The side effects of C/L seem to me to be much worse (every PwP I've spoken to tells me they're awful). Also I have to take into consideration my age. I'm 42...how long will the drugs help? What happens when they don't anymore? I have an appointment with a new neurologist to go over options but that is weeks away. Just hoping for a bit of relief in the meantime...
Oh dear, my husband is on Stelevo, Xadago and Spirocco the only side effects he has is orange pee . He was 49 when diagnosed 12 years ago . He didn’t start on medication for 2 years but says now if he had his time again he would start earlier as if his symptoms had been under control he might have been able to work for longer , he had to take early retirement from his headteacher job in 2014. His attitude is to do things now as you don’t know what the future holds - non of us do - could be hit by a bus tomorrow. Quality of life not quantity- although he’s not ready to go anywhere yet 😀😀
My husband was like you too. He was on sifrol and had terrible side effects Ta but has none on madopar at all. I would definitely go onto meds. The whole “wait til later’ theory has been debunked. Try b1. It has changed my husband’s life. He is now 3 yrs in and is better than he used to be! Do u see a mds?
That's great. I'll research these meds... I see my doctor at the end of the month...I took b1 for a week and then had a horrible rash for two months. I've been nervous to try again, but I think I just may.
in reply to gigiwillms
gigiwillms,
The rash you are describing is indicative of an allergic reaction and if that is correct, you may not be able to use thiamine at all! To continue to try and take thiamine after such a reaction can be very dangerous! I highly recommend that you do not try to restart taking thiamine and that you contact Dr. Costantini or your doctor to verify what I am telling you!
I know this is not what you wanted to hear, but you need to know it for your health.
Art
KERRINGTON in reply to
Could the rash possibly come from the tablet/capsule fillers, or, the type brand ?
in reply to gigiwillms
gigiwillms,
Because the upside potential with B-1 can be so compelling, I wrote to Dr. Costantini last night on your behalf to see if he might have some type of work around to preserve the option of B-1 for you. In minor rash cases it is sometimes possible to take an antihistamine with the B-1 in order to offset the hyper histamine reaction or reduce the B-1 dose to a level where there is no or very little reaction. Here was his reply to me :
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Dear Art, maybe something is still worth trying.
) you can try to use a preparation of vitamin b1 pure, without any excipient in case the patient is not allergic to thiamine but to the substances that are used to compact it. To us in Italy provides the pharmacy Severi of Grosseto that assured me that can ship it worldwide and I assure you at good prices. Inform yourself directly from them. Below is the email address. Also report it to Roy Posner who has a site on facebook.
Dear Antonio, I'm going to give you the following words in English that you requested for your Anglo-Saxon patients: "Our Pharmacy prepares capsules of Vitamin B1 (Thiamine) in the prescribed dosages.The preparations is carried out with exclusively pure Thiamine (100%) without any added excipient.For more information, write an email to:info@farmaciaseveri.com "If you think you need to add something, just let me know.Cordiali salutiAndrea Severi
2) you can see if the allergic reaction can be contained with antihistamine drugs or with small doses of cortisone because hindering Parkinson's disease is the most important thing.
Translated with DeepL.com/Translator
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gigiwillms,
So that is what he had to say about the rash.
I would only add, that if you decide you are going to go ahead and try HDT again, that you do it under the supervision of a doctor because from the way you briefly described the rash that you got, it sounded severe.
Art
gigiwillms in reply to
Thank you for so generously contacting Dr. C. I will look into getting the pure form. I'm so grateful for your help.
in reply to gigiwillms
Another option is to use the pure thiamine hcl powder as Erniediaz does. Its very reasonably priced with no fillers, but the downside is it is bitter and will have to be taken with something sweet or chased with something sweet. I think Ernie uses grape juice as a chaser after mixing the powder in just water. He drinks the bitter mix down and then follows that with the grape juice. Never use citrus juices or pineapple juice to take any oral thiamine forms.
On the "thiamine / HDT primer" page near the bottom of the original post are links to at least three pure powder suppliers. Also, that post will answer almost all questions regarding HDT! Here is a link to that post :
healthunlocked.com/parkinso...
Art
Have a look at John Pepper's posts. I realise that rigidity inhibits walking but ask him for help on how to get started again. He's worked wonders for others.
I like a warm bath with Magnesium crystals. I buy them from The raw food world, on line.
The rididity in my right arm disappeared after I added walking poles to my daily conscious walking routine. Cheers
Hi Gigiwillms. Are you rigid all the time? If not, when you are able to move, have you tried to do fast walking, which is different to normal walking. With fast walking you have to concentrate on each step you take.
Normally, you don't think about what your arms and legs are doing, but Pd affects that part of the brain that normally controls your walking. Try to concentrate on walking consciously. If you look at my website - reverseparkinsons.net you can get hold of me and I am sure I can help you, at NO COST!
Thank you! I’m pretty much rigid all the time but will try your suggestion on my morning walks. I’ll keep in touch.
When you say rigid, what do you mean? Are you unable to move your limbs because they are stiff or because they just don't do what you want them to do? Sorry for all the questions.
I don't know how to describe it...my right arm is stiff all the time, making it look like it's bent. I can bend and unbend with no problem but using that arm through the stiffness causes pain. My right leg is the same. My toes are constantly curled and the leg is stiff. I can bend with no problem and my walking is ok with minimal shuffling. But now when I drive farther than a few miles or even sit for a few minutes, the stiffness causes pain...
Hi Gigiwillms. I don't have that problem. The only thing I can think is that you are trying to force a tense arm to move, which causes the pain. Maybe you should try to learn how to relax the arm and leg, which is the obvious thing to do. Perhaps somebody can help you achieve that!
Does your upper leg throb when you drive?
No. Just starts to become like a steel rod and then my knee, thigh and hip hurts. Not throbbing, constant.
Hi, you could try fast cycling on an exercise bike (obviously you'd need to build up to it):
researchfeatures.com/2016/0...
Good luck!
Essential oils I use them daily
rigidity returns if I forget to apply
What essential oils and what do you dilute them in?
Having been on Ropinirole and Sinemet for 7 years I elected to go on Keto Diet 5 months ago which has enabled me to come off all meds, although I do take supplements inc B1. The Keto Diet regime has hugely reduced my back pain and ‘softened’ the muscles. I would strongly recommend going Keto rather than taking the meds, although your Neuro will probably roll his eyes - mine did.. Since PD is thought to be a gut-originating Disease, surely it is worth coming off the poisonous sugar/carb Standard American Diet we have been unwisely persuaded to follow on the basis of no science at all...
Search for Andreas Eenfeldt’s DietDoctor.com and all LCHF info, especially Gary Taubes and Nina Teicholz.
Good Luck, Best regards, Phil 2bats
Thank you, I will look into this.
YES to following John Pepper’s advice....and YES to good nutrition and staying away from any inflammatory foods. Look online for food lists. Best wishes!❤️
Do you have the option of medical cannabis? It seems to help some people. A knowlegeable pharmacist could choose the best combo of CBD:THC. Usually THC is very low.
I’ve tried CBD, but it hasn’t helped at all...
Check out the entourage effect.
Rigidity is what introduced me to high dose B 1, and mucuna puriens last March. What life savers for me. Tons of info on HU.
Amantadine 100 mg by mouth twice a day worked wonders for my husband, and still does. It also has a mild Dopamine effect also.
He was dx’d almost 6 years ago.
He is following oral high dose thiamine protocol from Dr Costantini.
He is also on c/l 25/100 mg three times a day...with at least 50-60% decrease in symptoms.
Should not develop dyskensia or need to increase c/l on Thiamine!
It’s almost a miracle!
If you are in the UK this option seems to exclude any fillers.
I would like to know myself. I take chelated magnesium, initially for sleep. But now my pd and stress has interrupted that. I also try to forgo meds. I hope you find an answer.
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