Rigidity

[saraoutwest]

Does anyone have any tips for rigidity? My neuro says im tremor dominant, but the muscle tension/clenching i get is my worst symptom. My whole body feels like its shivering even though you only see a bit of shaking. Its exhausting. C/L works sometimes - its hit and miss. Maybe i should increase the dose? I take half senimet 25/100 with one mucuna cap 60mg. Ive tried taking 1 whole senimet and no mucuna but it isn't anymore effective. Suggestions regarding any other helpful remedies would be appreciated. B1 has not been effective for me. I do regular yoga, exercise, meditation. Thanks

[Jaycee534]

I do suffer from rigidity and pain -my greatest problem is my mobility

[Jaycee534]

My medicine has not changed through Lockdown-I am on 4 -25/100 a day of sinamet -I feel I need more but getting to see my consultant has been difficult

[jimcaster]

Hi, Sara! When I first began taking sinemet, my doctor had me start with half a pill for a week, then 1 pill, then 1.5. I felt almost no benefit from 1 pill, but 1.5 or even 2 pills completely eliminate my symptoms. If I were you, I'd consider upping my dose to 1.5 or 2 pills (two or three times a day) for a few days to see what happens.

[saraoutwest in reply to jimcaster]

Thanks Jim, yes I feel maybe experimenting with my doses might be a good idea. The fraustrating thing is my symptoms vary so much from day to day. Some days I’m almost symptom free, other days I’m a wreck! Oh the delights of PD!

[ParlePark in reply to jimcaster]

Same here Jim.

[carpark]

Wow, sounds just like me. The sensation of shivering is exactly like I have described it, but no one believes me, since they can’t see it. The constant tension causes muscle pain and weakness too. It IS exhausting, I agree! Sinemet helps and exercise helps loosen them up. I wish I had a better answer.....

[Hidden]

Would you say that the shivers sometimes feel like vibrations? Mine started as shivers and are now more like intermittent vibrations. At first I thought I was having heart palipitations.

Medical marijuana helps me a little.

[carpark in reply to Hidden]

It reminds me of when I used to get really cold and I would shiver so hard my my muscles would tense up and I could barely walk. This happened long before PD, when I was young even.

[saraoutwest in reply to carpark]

Yes!! Same! Good description

[Manypony in reply to carpark]

Yes, I had issues with cold as a youngster. Also I lived in a very cold climate which was especially challenging

[saraoutwest in reply to Hidden]

Not so much vibrations, but internal shivering in my whole upper body. Lots of twitching too. Cannabis helps somewhat, but I hate feeling high. Only thing that works consistently is a few vodkas (which I like) but I know is not good for me...and I hate the hangovers

[Kaykaykay123 in reply to saraoutwest]

I've got frozen shoulder and my muscles contract and go rigid. Pain is awful. I take 1 sinemet a day. They aren't sure if it's the parkinsons. But my nuero is thinking of increasing the dose

[Missy0202 in reply to Kaykaykay123]

I had two frozen shoulders, one after the other. I know that pain! I had them prior to my PD diagnoses, and intense physiotherapy did the trick

[Manypony in reply to Kaykaykay123]

I also have “frozen shoulder” common for Pd wonder why

[park_bear in reply to Kaykaykay123]

One dose daily is too little. I think most PWP require at least three doses daily. See here for the difference between the immediate release and controlled-release versions:

healthunlocked.com/cure-par...

I suggest discussing increasing your dose frequency with your M.D.

[LAJ12345]

You could try apolloneuro. It has seemed to help my husband but many to many factors at once mean it is hard to tell if it is responsible for his improvement. It is a one off and about the same as 3 months of one of his vitamin mixes so I think it was worth it.

[Beckey in reply to LAJ12345]

I haven't heard of apolloneuro. What is that?

[LAJ12345 in reply to Beckey]

It’s a wearable device.Here is the page. Read through some of the articles about it. It is designed by a US University and has been used for kids with brain issues.

apolloneuro.com

Micronutrients are also a tool in our tool box. Here is a link to course I am doing on multinutrients at the moment . The video is interesting.

Edit.. actually I don’t know if I can link to this as it may have copywrite issues and it has my name in link. Sorry will try and find a copy elsewhere.

The multinutrients Julia the lecturer has used in some of her research are Hardys daily essential nutrients. My sons 7 year old was had adhd and was in one of her early studies years ago. He is now 15 and has been taking them since he was 7. When he misses taking them as he does now as a stroppy teenager his mood is considerably worse!

Edit Ps here is a different talk by Julia rucklidge on multinutrients.

tedxchristchurch.com/julia-...

[Erniediaz1018 in reply to LAJ12345]

This is great! Thank you

[LAJ12345 in reply to Erniediaz1018]

I think maybe sometimes these shivery internal tremors are caused by anxiety so these may work for that.

[Despe in reply to LAJ12345]

LAJ,

Guess, you have to have the apps on your mobile phone to synch?

[LAJ12345 in reply to Despe]

Yes but once it is set up if you use same rest and relax setting you actually don’t need to use it just push the buttons on the side to reset. You can put device on airplane mode from phone if you are worried about Bluetooth

[Despe in reply to LAJ12345]

Thank you, LAJ. Anything I have to synch, I avoid it. . . I have been using a fitbit watch, but I am looking for a "no-smart" watch to replace it.

[LAJ12345 in reply to Despe]

It doesn’t measure anything, it just vibrates like a cat purring so it soothes. You only need to synch it when you want to change the settings or at the start, then after that you don’t really need to synch it at all.

[12stargate in reply to LAJ12345]

Thank you LAJ!! Very informative and helpful!! 😊

[1rocketman in reply to LAJ12345]

The Apolloneuro sounds intriguing. My husband has stiffness several times a day, and some social anxiety because of his low voice, which he works to improve; So sad because he was a fun-loving people person before PD. Can you just elaborate a little more on what it has helped with your husband and how long he’s been using it?

[LAJ12345 in reply to 1rocketman]

He’s been using since December. He was so anxious he had actually attempted suicide and was taking clonazapam.I think he is a lot less anxious now but still not 100% anxiety free. He has barely had to use the clonazapam for months.

But at the same time we have had summer which always helps him a bit, and he has also started to take 1/4 procyclidine 2x per day and a few drops of hemp oil (thc and cbd free) and has sublingual GABA when he feels anxious. We have had a few months of anxiety promoting behaviour from our 18 year old son and he has coped reasonably well with it.

I am not sure whether it will help with rigidity and internal tremors but as his symptoms are all worse when he is anxious maybe it will.

Actually he found when he went onto sinemet at the start it made him much more stiff and rigid. He only went on to it in the first place because the nurse said it woul reduce the stiffness in his shoulders but it made them worse and made him anxious.

[1rocketman in reply to LAJ12345]

Thank you for your reply and additional input. I'm sorry your husband went through such a rough time with the anxiety. My husband gets a little bit of social anxiety because of his softening voice, but that is it for now. His real issue is the rigidity when his meds wear off. It is amazing how different PD effects everyone. Thanks again for your response!

[Discogs_discogs]

Some people take Mirapex for internal tremors.

[Joanne_Joyce in reply to Discogs_discogs]

I take Mirapex along with Stalivo, but during my off periods I have the same symptoms the others are describing. I try to do stretching but I am too exhausted to do more serious exercise.

[Doohat]

I think I'm in the same boat. I'm tremor dominant, but I've been having problems lately with muscle stiffness in my arms and legs. I'm currently taking four Sinemet CR 25/100 pills a day. Increasing the individual doses by a half or a whole pill does seem to help. At least I noticed the dystonia goes away and I have slightly less off time. I would like to try switching to the immediate release version of Sinemet (same dose) or maybe go with a more frequent dosage interval (5 pills instead of 4) to see if that helps. In the mean time, I've been taking long hot showers which seems to help a lot. Also if I apply magnesium chloride oil on my legs and arms, that seems to help too.

[Joanne_Joyce in reply to Doohat]

Hot tea helps a bit to warm me up too.

[Manypony in reply to Joanne_Joyce]

My traditional Chinese medicine practitioner suggests hot foot baths, i use mugwort and ginger, ahhhh

[laglag in reply to Doohat]

I use magnesium oil, as well as Emergen C also and it works well for stiffness. I've been using emergency for seven or eight years and I just started using magnesium oil and it works very good for near immediate relief. I have a roll on type that you can roll over your muscle as hard as you want. It feels good.

[bigl62]

Wearing a sweater and scarf was helpful

[Kt088]

I experience this as well and CBD oil works well for me. It’s a 20 to 1 ratio so I never feel high but boy, does it calm my tremor and the rigidity down. It’s the only thing that I have found that works. Qigong helps too as does exercise. I also use my jacuzzi which relaxes my muscles. Hang in there.

[JMSL in reply to Kt088]

Do you have a specific brand of topical CBD oil that you'd recomend?

[Kt088 in reply to JMSL]

the kind I get is a 20 mg cbd to 1 mg thc oil and it’s made by a company called the cookie factory and it cost $30 for a small bottle and I usually take one dropper in the morning and one dropper in the evening so the bottle lasts me about a month. There are many companies that make oil online.

[JMSL in reply to Kt088]

Thanks for the info! I misunderstood & thought you applied the oil topically. I've tried CBD oil before with no benefit but you're right - there are lots of choices out there!

[Allyn]

I use valerian root for internal tremors. Using a tincture - Nature's Answer. I tried CBD but it didn't seem to do much for me. However, cannabis works well.

[Hidden in reply to Allyn]

Would you mind elaborating on what kind / form of valerian root you take? And the Natures Answer Tincture? If it’s helping your internal tremors then I want to seek it out bc I’m struggling with internal tremors as well.

Topical CBD in a cream form helps my sore shoulder and leg cramps. I highly recommend that. The brand I’m presently using is called Shikai although CBDMD is good too.

Epsom salt bath is healthy and helps with muscle cramps, highly recommend.

Magnesium L Threonate and zinc before bed has helped.

[Allyn in reply to Hidden]

Nature's Answer Valerian (valeriana officinalis) 1,000 mg . Comes in 2 oz bottle. It is a tincture. low alcohol, gluten free

[Manypony in reply to Allyn]

I use valerian to relax for sleep, I’m just now giving,CBD oil a fair trial. I live in Oregon so full spectrum cannabis products are available by strain🙏🏻

[Allyn in reply to Manypony]

From what I've read, pure CBD does not help many people - a little THC is necessary. How much is very individual.

[Scrudgie]

All of these comments are helpful! I’m so grateful for this forum and the time folks take to reply!! My partner experiences the same thing, and it varies day to day as well. However, we’re slowly figuring out a regimen that seems to really be helping thanks to pdkid’s posts about helping her dad! Tyrosine is taken with sinemet and B6 is dosed 2 hours later in the same proportion as the Carbidopa given. We were able to reduce the sinemet to 1/2 a pill (immediate release) three times a day. L-Theanine and magnesium taken at night; omega 3 and Cbd in the day as well as lions mane every day. Every 4th day micro-dosed psilocybin has improved mood (no more apathy) immensely! Slowly rebuilding his walking strength and endurance! We’ve been walking 2-3km a day! It’s an amazing comeback from a month ago!

[Despe in reply to Scrudgie]

Please share more on psilocybin. Where and how you purchase it. My husband has apathy and I would like to have him try it.

Thank you!

[Hidden in reply to Despe]

Despe, he is using a red light, right? Has that helped? What about L-theanine or cannabis? Both help me.

[Despe in reply to Hidden]

He is using Red Light therapy which is helpful (approx 4 months). Apathy is hard to treat. He was taking L-theanine, not sure about that. . . Cannabis is illegal in our state, although they are about to pass a law on MM.

[Manypony in reply to Despe]

I’m working on answering this question. The good news, at least I’m Oregon, there are beginning to be “clinics”

[Despe in reply to Manypony]

Thank you. You are lucky living in Oregon! I lived there for 4 years, JUST BEAUTIFUL!

[Scrudgie in reply to Despe]

thethirdwave.co/microdosing...

That’s the website with information about microdosing. As for purchasing the low dose capsules, you will need to google search it and order online. I just happened to know someone who lives near me who could supply it. There are many reliable sites online though! Just spend some time googling it and send emails with any questions! A good vendor will take the time to answer your questions!

[Scrudgie in reply to Despe]

I’m lucky because where I live in Canada there are many opportunities for purchase... I looked for you, but I could only find sites that deliver within Canada. Probably too risky sending them over borders.

[Despe in reply to Scrudgie]

Thanks! Guess, I have to take a trip to Canada, long overdue. I visited your beautiful country many years ago. I had a fantastic time.

[Hidden in reply to Scrudgie]

I too would love to know more about the psilocybin. I sonetimes take L-Theanine or CBD too for a little calming effect.

You might want to look in to adding Citicoline and L-Taurine both are for brain functioning according to doctors I’ve listened to.

I’m not sure which is better, tyrosine or phenylalanine.

[Despe in reply to Hidden]

CC,

Just ordered SOLACE. Have you started it? Before SOLACE, BIO-CULT was the "hot" probiotic. . . Well, we will keep trying, eh?

[Hidden in reply to Despe]

Not yet. I’ve got a few more bio-cults left. I’ve read that changing probiotics regularly is healthy.

Have you read about pre-biotics? All the probiotics won’t do what is intended without a healthy colon. Feeding the colon fiber is very important. Onions, leeks, artichokes, asparagus, radishes are all excellent for that. I have a new powder for colon health I can send you if you are interested Despe. I’m not home at the moment and don’t recall the name.

And we will keep trying Despe!

It is ridiculous that we have to do all this research ourselves and there are not more reliable doctors. We have spent a lot on functional medicine doctors and I’ve learned some from them but have literally learned more from this forum. Your dedication is heartwarming and inspiring Despe!

[Despe in reply to Hidden]

The best pre-biotic is ACV (apple cider vinegar)! I have two tbsps every night after supper (my husband hates it ). I suffered from GERD and ACV is what is recommended. It is absolutely true! It has helped me tremendously. As far as all these good pre-biotics you mentioned are foods that I grew up with. In general, all fiber rich foods are good for the colon. We also buy fermented vegetables which was another food I ate plenty of when I was growing up.

Right now, we have two homeopathic/alternative doctors. They are both good in their area of expertise, but no doctor can replace personal experience forum members share with us. Everything I know, I owe it to our wonderful PWP (and Art, Rescuema and Joe from NY, who are not PWP).

You are a fighter, too. Don't ever give up in your quest for a CURE!

[Hidden in reply to Despe]

Despe, I’m going to resume my ACV and fermented veges. I literally forgot about them with all the other stuff I’m doing. Thank you Despe!

I’ve learned a lot from rescuema and felt so supported by her. 💕💕💕

[Hidden]

I understand what you are saying, it’s similar for me, I too use CBD oil and it works great, as well as magnesium, but I have found that keeping moving as much as I can throughout the day reduces some of my rigidity and muscle tension . Stretching exercises are helpful as well. A warm soak in the tub doesn’t hurt either. My legs seem to ache the most and when they’re really bothering me I use my stationary electric peddler for 15 minutes and it makes a big difference. Amazon and Walmart have them around $65. Best investment I’ve ever made. I use it every day. It does a lot of the work for you but it makes my legs feel so much better. I also have a full length heat or no heat massage pad that I put on a chair or on the couch and that works wonders too . You can find them on Amazon. Personally I have found that the sinemet, within a half an hour of taking it, causes an increase in some muscle aches and stiffness for a little bit, not sure why. I seem to have less of theses symptoms when I’m in “off” mode. I am a slower but I have no pain and tightness. Not sure why that happens either. Best of luck to you. Hang in there.

[MissmyBoston]

Have you tried the Vitamin B1 (HCL) protocol from Dr. Costantini? My husband uses and seems to help him. High doses of thiamine seem to help some with rigidity, sleep and freezing. You can find out more by checking out the Parkinson's thiamine hcl FB group.

[Peaches]

Hi , fellow parkies. After reading all of the various things taken to help with rigidity I am wondering if there is any help for me.? I have been suffering for the last several months with a painful knee. This has forced me to resort to using a cane to walk at times. I went to physical therapy for a month but the pain went from bad to worse. I developed a terrible intermittent shooting pain in both my upper thighs. I My muscles are now tighter that ever before. Is this just another thing that is inevitable in the in the ever changing world of PD ?Is this the type of rigidity that you have been describing ? I am seeking suggestions of how to ease the pain so that I will be able to walk without hurting. This has been the worst time I have had in all of my eleven years of PD. I appreciate any helpful suggestions out there.