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Day 965 of steadily increasing cpsp. What's it like ?

Nige

I don’t think Farma especially came into this one. It was more that Rolfing hadn’t been proven to show benefits over regular massage.
One thing sticks in my mind that one of the consultants told me when I was asking about some possible solution. He said something along the lines of “if there was a proven solution, we would all be doing it by now”. Well, yeh, if you were researching, that might help

Nige

Would you refuse a proven safe solution from a pharmaceutical company for your leg issues ?

Simon

The evolution of ideas is a funny thing 🙂

A few thousand years ago folk tried things and some of them worked and some of them didn’t

What worked was repeated and passed down from mother to daughter or father to son etc. the dimension of time added refinements and confirmations.

Somewhere between them and then and us and now the ideas of science grew.
A new form of witchcraft with different incarnations or a new form of religion with different deities - and a decontextualized claim on absolute truths

Now we live in a world where science(?) proves witchcraft really did (sic) know what it was talking about or didn’t!
But now we also have advertising. Construction of thoroughly one-sided messages that bear the artistry required to mislead without lying in order that we can pretend there is advantage for all when in reality there is advantage only for the creator of the message

Further science is young. Problem with the young is they overlook much that time roads or confirms so isn’t fully understanding of the interconnectedness of the world.

Science’s pronounce, that something works may ignore material context of the breath of impacts to the full system - and vice-versa

Is it science or witchcraft When chemistry and or placebo effect and or…. Has benefit?

Perhaps best to regard everything as on offer for everybody to have the freedom to choose or not as they wish.

2¾ ¢
🙂

Andrew

It appears to me that Old Wive’s Tales, or tradional medicine and the like are treated as hokum until “proven” by science. That makes the practitioners either renegades or pioneers. Two very different things. The awarding councils will only fund research in scientifically proven areas. But many of us can’t wait the 10 or more years for medicines or practices to be “proven”, and this can only really be done by approved practitioners, with resources listed and approved, the finances predicted at the start, the beneficaries described etc. We are talking months taken in prepartion and a small chance of success! But it is a closed shop. Given this, it is no wonder that some of us adopt unapproved methods if they sound and feel right. We’re using different criteria, perhaps? For us it isn’t just a research project but is potentially life-changing. I can’t approve or disapprove these things, for many are within a fuzzy boundary. And British scientists have a long and venerable history of self-experimentation as well!

Simon

Andrew

The peer reviewed process is full of dysfunctions caused by the fact that people are driven by emotions.

Not unknown for citation count has more weight than accuracy.

Funny how breakthroughs are very markedly by people outside the broken through field

The balance has been lost 🙁

3⅘¢

Andrew

Dysfunctional, yes, and it can work both ways. Once I had a paper rejected as being “a well-known” impossible-to-solve problem. I challenged the reviewer to find the error. The paper was published in that journal. In another case the reviewer stated that the journal no longer took that subject - fair enough - but I was sent a similar one to review onty six months later. A second journal said that it was too mathematical, but it was entirely numerical with no mathematics! A third journal accepted it with no changes at all. It was then a story to tell about journals, and there, I have told it again!

There are more retractions now than there was, which suggests that the whole caboodle also got past the reviewers in the first place.

And there are a few citation cartels that I know of. Lots of back-slapping on ResearchGate. But they are often of third rate. Well, that is my opinion….

Fairness? Well, to misquote Ghandi, it would be a good idea.

Part of the problem is that the really good people don’t wish to spend the time reviewing, whereas the not so good plump up their CVs.

Nige

I can’t help thinking, individuals for various conditions, desperate in some cases, are easy pickings for those whose main aim is financial gain. This isn’t new of course but internet and social media can amplify the latest wonder drug so easily. Get a celeb of two to amplify the product.
It seems a celeb endorsement is more powerful than a scientific review.
If someone has lots of money, perhaps that’s one thing. If someone is desperate and poor, it feels like a crime.
The bit that really stuck out for me is how this idea might work. Someone comes up with an idea, doesn’t initially undertake the most basic comparisons. Its not in their interest to do so. They can claim success for their new item when success would have happened with the existing solution.
They licence their idea and you can be an “approved” practitioner on payment of a decent sum. Those approved practitioners are then free to further amplify the “incredible benefits”. Its in there interest to do so. Perhaps there is an annual fee to maintain your approved status. Perhaps there is a reward for any new practitioners you introduce. Pyramid scheme in effect with the people at the top raking it in.
Is in any better than something that’s half the price or even free ? is it complete bullshit who cares, look at the $ signs. Perhaps even suggest it’s this new thing Vs the establishment. Ask for additional funds to undertake a “scientific” review. T-shirts, banners all available.

If it doesn’t work, it’s because you didn’t believe it in enough. It borders on faith and followers will defend it vigorously. Perhaps it appeals to a certain section of the population, who can we blame for all of your ills ? Perhaps it is the establishment who are so set against us.

Any resemblance to Brexit is entirely coincidental….or is it ? That seems to be a belief system as well.

Nige

Day 1182
Clearly the deterioration is ongoing at a rate not experienced early on this journey. The severity of pain but also overload of sensations is having more of an impact, movement, balance and directly impacting QOL.
As a guess, what is going on.
Both pain and stiffness are protection mechanisms. One for action and the other to restrict movement.
I feel that the brain is directing the nerve signals through the damaged thalamus in a variable way.
At times it simply cannot interpret them and this results in a loss of sensation. Starting to happen at times on 2 smaller fingers of right hand.
At times, the signals are routed to the pain receptor. Perhaps the brain unsure what the nerve signals are or through the hyper excitability, errs on the side of caution. It wants action taking even though there is no action to take. There often is no threat or the threat is minor, a gentle touch, cool air,.
The stiffness is a protection mechanism to prevent further damage to a limb the brain feels is damaged.

The constant high alert, pain causes body to tense all the time, results in increasing fatigue. Not helped by sleep apnea issues. Unable to perform more detailed tasks without high levels of fatigue. This is a noticeable change.
Papers suggest movement, cognitive and memory decline. How can you function to any normal degree when in excruciating pain.

Without the hope of surgery, likely mood would deteriorate much faster.

Hopefully post surgery there might be a positive post but what my condition might be like with surgery 2 to 4 months away and optimisation 4 months after that is anyone’s guess. Plus 30% of operations are expecting not to bring any relief.

Nige

Day 1257
It’s slowly getting worse but that is nothing new.
What is new currently is the level of fatigue which I think is being driven by poor sleep apnea scores. The brain failing to send the signal I should breathe, come on brain that’s got to be right up there with tasks to do surely.
Trying desperately to stay awake even when someone is talking to me can be beyond me in these warm toasty days.
CPAP mask changes so that straps don’t impact surgery scar. Vital I do everything I can to avoid infection. Couple of months away at the moment.

If I run a finger nail down the middle of my left foot, on some days/times in a day I can’t feel it, others it’s like getting a really unpleasant sting.

That loss of feeling does nothing for walking, neither does the nerve pain. My body does not want me to use my left side I suspect. Keeping it still is just fine when it thinks I have “hurt” it.

I imagine the foot pains are like gout or walking on hot coals. Strangely I think I would react better to that than a slightly, only very slightly cool floor.

Why hasn’t my mood collapsed? The Anti Ds perhaps. I’m really not sure. By every logical measure they should have done but not so far which is good. Maybe I am hanging on to that forthcoming surgery still. Assuming the latest timescales are kept, will be Jan before the device is fine tuned.

Pregablin dose increased, bit more brain fog which really becomes intense when tired. Got a chance to speak to a sleep consultant soon to see what can be done about the whole breathing. Bit of a vicious circle, appalling sleep due to apneas, tired in the day, increased chance of apneas when starting to doze, more tired and so on.
Will have to write myself a note, don’t forget to breathe. Body apparently loves nicely oxygenated blood.

Simon

Nige

Gosh
½ sounds impossibly dire and ½sounds like testament to your fortitude

Your often in my thoughts

Stay strong

Ruthy

Nige really sorry to hear about your struggles. I was trying to think back to 2020 when I was about 1257 days in, I do remember I suffered with low level depression on and off from day 1 upto last March when it got really bad I didn’t leave the house or speak to anyone, that’s, I think, when I found @Simon on SA forum and you of course @Nige
I just don’t feel like I’m on the same level of pain and other discomforts as you @Nige so I’m so impressed by how you’re coping.
I’m always pretty uncomfortable with the pain, whilst I’m on my 600mg of pregablin, and I know I’ve got my codiene and tramadol for the really shitty days. But I’m able to live with it, which is why I know I’m obviously not at your level.
It makes me very sad for you to be in such pain and it’s just inspiring how you have managed to keep your mood up 👍.
To sympathise, I can’t remember not feeling fatigued or brain fogged or blurry eyed - those things faff me off an awful lot, its like life is saying “well, since you’re in pain and not able to do as much now, you might aswell feel knackered all the bleeding time” 😆😆.
Is your sleep apnea another symptom of your stroke or some other reason?
Hang in there for that surgery, I’m so hopeful for it yo help you 🙏

Nige

Ruthy I think the central aspect might be. It seems from the split between obstructive and central, the central figure has increased on average to be around 50% if the total.
I didn’t get diagnosed until post stroke so it’s possible it existed before. I know I snored. I definitely didn’t have episodes of intense tiredness like this.
I would like to get back to driving if the surgery is a success. The surgery outcome is hoped to be an improvement on pain as well as sensations. Maybe my brain isn’t “sensing” the need to breathe as well as before. Perhaps the oxygen level sensor can’t get it’s info through.

Some of the pain might be learned after a while. I expect it to hurt, so it does. For a fan to be uncomfortable in this weather is taking the Mick a bit. One other thing I have discovered is my body does not like breathing in hot air. Found that very difficult.

The conservatory was up to 48 degrees yesterday and just passing through it was grim. Shame I can’t store the heat for the winter !

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