The Twilight Zone

Hello wonderful people,

I know many have passed through, or indeed, live in the “twilight zone”. I certainly do. My days alternate between good and bad, like clockwork. I call these Yin and Yang. On Yang I have strength and my thigh muscles are soft. On Yin they are hard, near my hip. That’s not so bad, and as my innervation (the process of supplying nerves to muscles, brain & nervous system) progresses, so does my condition. A senior physio determined these are spasms, not spasticity. Yet there is so little information on the net; all it says about a spasm is that it can last for up to 15 minutes. Mine can happily last 15 hours. Hydration is good, magnesium relaxes muscles, but we don’t even know what causes a spasm. I think another word is needed in between spasm and spasticity. But anyway, so far, so good.

However, superimposed, on top of my Yin / Yang cycle I suffer from another, even more surprising cycle. Every 3 days a nerve that runs from my long toe up right my leg gets inflamed, becomes painful, and I cannot even walk: Hallux Day. So, today, I am barely able to get to the loo. This will next happen on Monday, then next Thursday, then next Sunday… etc. On the 2 days in between episodes the nerve will return to normal, and I will walk fine, albeit with a stick.

The 2 professionals that follow me closely, have opposite views. One is a top radiologist (Radiology plays a crucial role in the correct diagnosis of diseases through X-ray, CT scan, MRI, and angiography. It is one of the most rapidly advancing specialties within medicine), the other, is an “old school” TCM Chinese Doctor of high repute. I have known them for 20 years and have great respect for both. One believes it’s entirely a physiological problem, perhaps never reported before, and the other believes it is not a physiological problem. (I’m not revealing who said what.) Neither has heard of such a case, nor can I find anyone else, on or off the internet who has ever experienced such cycles. I cannot jinx these cycles, in fact no amount of ingenuity I apply can thwart their recurrence. So, I am grounded every 3 days; though I can stand up.

I have another problem in that my thigh becomes tight and hard as a rock while I sleep. Either I fold my leg as much as possible, or I get up in the morning to see it finally soften. A friend who comes to see me once a week says my body is telling me to rest. Perhaps it’s that simple, but if you think I’m living in hell, you would be right in that I may have my right foot in the door to hell. Yet I am a man of faith, and often pray to the Lord to see me though this dark patch of my life. Sometimes I think he is cross with me, but my faith remains unshakeable. I have even thought of ending my life, but I have a loving wife who would kill me for sure if I did that. The Lord would certainly not forgive me.

I do rehab, reading, meditation, Qigong, and of course exercise with caution every day. My focus on my recovery is great. People have suggested I turn it down; so I do that too, and sometimes just paint a picture or listen to music. If I didn’t have such an amazing wife, I would not have survived my stroke in the first place. I know we stay in this world a lot longer if we are loved.

I wish every last person who is fighting and suffering absolute maximum strength. With practice, patience & perseverance I hope we all get through our nightmares one day. I often wish people complete faith in their recovery, which I still do, but now I must include, and apply it, myself! ciao, Roland

My latest painting (last Hallux Day)

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Thanx for your words :slight_smile:

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Thanks for sharing @pando i really hope you get some relief from your troubles soon.

Your painting is amazing. You have a real talent.

Best wishes

Ann

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Thanks @Mrs5K and @SimonInEdinburgh,

I feel such a bore and hate to express negative experiences to people who deserve something much more uplifting. I hope to tell better stories one day. Bless you, both

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I much prefer the honest truth of it all, its what most people come on here for, the realities. So they know what to expect and not blindsided by it. You have to tell it as it is, its your reality and its no picnic!
Love your painting too😄

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I agree with Lorraine :slight_smile:

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Pando, that’s a beautiful painting. I love the pastel, watery quality!. SPASMS-- My experience on spasms after my stroke 6 years ago-- Usually in the evening as I relaxed in bed and prepared to go to sleep. My left leg would tighten up in a spasm-hold for about a minute–then relax. After only about minutes’ peace, it would happen again. They weren’t painful, but so tight and annoying that I could not fall asleep. I tried oral magnesisum and magnesium rubs, muscle relaxants-nothing helped. A nurse told me about CBD oil… So I tried it. It worked for me. For me ( 5’2 120 lbs. About 40 mg oil under the tongue, holding it there for a couple minutes) Within 10 or 20 minutes the spasms went away–until the next night. After several weeks I only needed it maybe 3 times a week–then once a week–then once a month maybe. Now, 6 years later, the symptom pops up only occasionally, so I keep CBD on hand. It’s hard to know how much one needs. I’ve heard to start low, like 8-15 mg, and slowly add more until you get results. Taking too much won’t help. I usually start with 20 mg and if I don’t get results after 20 min, I take 20mg mg. more. That ALWAYS works for me. I check with my doctors first. Both were ok with it. Other people may need more, or it may not help. Just saying. Hope all goes well for you. :slightly_smiling_face: :heartbeat:Jeanne

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Thank you Jeanne,

I take CBD+ every night… just a few drops or sprays under the tongue; I’m also a fan of Mg, and we have a great Liposomal one at the moment. I also take Chinese herbs against spasms and 1 or 2 bonus tricks up my sleeve. Still, I feel virtually defenseless against spasms, though they are much less intense than they used to be. It’s the rogue nerve that gets angry every 3 days that perplexes me.

Thanks for the comments on my painting; I’m a bit rusty & there are a few things which went wrong, but I paint with happiness, then write miserable posts! oh well thx again, Roland

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Never feel such a bore- talking/sharing experiences can be in itself a help to oneself and others…love your painting by the way😊

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Hi there, Nigel,

Thanks for your input. I have not considered any surgery. About the release signal ; that’s correct, it never arrives (until I go to sleep at night). My higher brain functions are not fully online, and I would say my central nervous system is acting as if it is damaged, though I believe it should improve as the innervation process continues.

I have several unexplained symptoms all due to insufficient innervation. My Chinese Dr stipulates that I have reached the 50% mark ; I have it rough, but every reason to believe I am making steady progress. As the nerves engage I go through all sorts of weird and wonderful sensations: This evening I noticed crepitus in my knee (they sound like Rice-Krispies).

Speak soon, ciao, Roland

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My neck exercises are the worst for creating that crackle noise !

:slight_smile:

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Morning Simon,

I’ve just ordered Raw Sports Collagen supplement ( which I was using and ran out of, so had substituted it with one from Amazon - Let’s see if this makes a difference ). Then Omega-3 every day. Anyway, I had a bad day yesterday, but today feels a bit more promising, because my medial dorsal cutaneous nerve is more settled for a Hallux-Day.

My neck also has a few rice-krispies in it, but I will do some Qigong to loosen it. I also lowered my Chi into my lowed Dan Tian this morning via meditation. It helped, I think.

Chat soon, ciao, R

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Hi Pando

Firstly, great painting well done, wi derf skill to have.

Have you heard of Dystonia ? It’s a condition which I had for 4 years, it causes the muscles in your body to spasm. It can happen anywhere but I had it in my legs and I didn’t walk for 4 years. Basically it’s a brain response as to pain or similar and the brain shuts the body part off but the conscious still keeps trying to use the legs, hands etc. I saw a Dr in London Uni College Hospital, Mark Edwards, he identified it was a functional disorder? This is not in any way put on or imagined, it’s the power of your mind. I saw 6 neurologists who told me all sorts of things but Mark Edwards got me walking in 5 days with his specialist physio, I’ve walked since and I train regularly. It may not be anything to do with dystonia but get in touch with the dystonia support group you never know.

Good luck sending all my best wishes to you.

Paul

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Thanx for the heads up :slight_smile:

Others might like to know There are support groups on

Caio
Simon

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Thank you Paul,

Thanks, but this is completely different from Dystonia. The “spasms” I have are on a much longer time scale; they last for 15 hours. Another recent development is that I get contracture in my thighs only when I sleep. They tighten up until I wake up and do a little exercise and stretches to undo them. Today I have my 3 day cycle.

How did you manage to see so many neurologists?
I am so glad you found a way forwards
Thanks so much for trying to help
The power of your mind? the brain’s response to pain? Interesting ideas.
Ciao, Roland

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Love your Artwork. That is a real talent.

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@Huggybear did they say that your dystonia was FND related? I have FND which badly affects my walking so am interested to hear how you got referrals to neurologists etc.

Good to hear you are now walking after 4 years of not being able to.

Ann

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Little update on my condition, for the curious
Relatively good news!

I have worked out where the inflamed nerve (medial dorsal cutaneous) from my big toe up my leg came from: a foot massager that I bought a few months back! It was aggressive and over-stimulated the nerve to a painful extent. My wife had the same impression from using it. My radiologist friend agrees completely that it is the cause of the abnormal stress (rather than any underlying pathology); he also maintains the knee cap rattling “Rice krispies” (without pain/swelling) are due to fluid redistributing itself. The danger of it being premature patellofemoral osteoarthritis is highly unlikely because it would be accompanied by more sinister symptoms, like pain going up/down the stairs. What a blessing to have a figure of authority rooting for me!!

Good luck all, ciao, Roland

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Who’d have thought a foot massager would be the cause of your problem. Hopefully it will settle soon if you’ve stopped using it (I assume you have).

I love the rice krispies description. Glad it isn’t that big long name you mentioned. Will the redistributing fluid settle at some point?

Here’s to better days ahead.

Ann

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Thanks, Ann

I used the foot massager for a month, then realized it was too rough. It kept going for the same spot on the sole of my foot so I gave up after a month and shelved it, and forgot about it. It was only by chance that I realized it was to blame for my current predicament. I am hopeful that by the end of the month it will be almost gone ; just in time as we’re going to the Greek Island of Kos on holiday. The hotel is on the edge on the beach.

I hope you’re doing fine, Ann,
Thx for following my progress, ciao, Roland

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