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

Nige

What is it like if you have severe or excruciating pain? Mine started around 3 months after the stroke so the days above is give or take a few days. I could say it’s been fine, not too bad. Today though has been ******* miserable. Yesterday was hydrotherapy day so some pain relief for a few hours after.

Sorry about the running order.

Early in the morning, it was a case of brain fog. Possibly caused by sleep apnea. Despite the use of a cpap machine and little in the way of mask leakage, I had an AHI score of 17.5 and an ACI score of 6.1. So on average, I stopped breathing 23.6 times on average every hour. 15 to 30 is considered moderate and would warrant a cpap machine. My brain would have been on full alert so many times trying to trigger the next breath, not a recollection of waking apart from once. Not sure of the reason for the increase of late. Perhaps my sensation deterioration impacts that as well.
The pain in my body today would have shown in my face almost all day. At one point this afternoon I found myself trying to breath the pain away. It is painful and for long periods, it’s a pain that doesn’t go away. It varies in intensity across the areas mentioned. Its chiefly around my left side, my eye, my biceps, my hand, my hamstring and my toes. All day today it has felt like I have had a badly torn, sore and burning hamstring. I have pain every step. I have little idea where my left foot is due to numbness. My body constantly favours my right hand side when standing/walking. Often suddenly so, giving some balance issues.
I can’t stand for too long. The burning pain in my leg builds and builds until it’s impossible.
I tried to help tidy the kitchen tonight. I put my left hand on a knife and got the equivalent of a cold electrical shock pain which hurt in my biceps as well. At least that’s what my brain thought. I tried to hold a frying pan handle but couldn’t for long. I found the extra weight of just a couple of plates made noticeably higher walking pain levels, presumably the higher compression of the muscles is enough to trigger more nerve signals.
After 10 mins I had to give up and seek the warmth of a duvet. Its tiring and with apnea figures like they are, sleep isn’t helping much. I found myself falling asleep quite often but it’s light and short and I am aware I am not breathing when I wake. As you can imagine, I am not on top form today, conversation is hard work. My humour has gone for today.
Typing on the other hand is not quite so bad. I do find myself closing my eyes at times, almost to save those few bits of energy by not processing vision.
The description of pins and needles for cpsp, well for me, I find irritating. The constant background feeling is nothing like when you bang your elbow. Its more like quick firing burning pain.
It’s obvious when you stop and think about it but my body is tensed up a lot of the time. Pain does that, it’s natural.

Will I look back at day 1100 and wish it only hurt like it did on day 1055 ? Will my capability continue to reduce, I hope not but it’s very noticeable how much more time I am having to spend in bed. Perhaps the apnea figures will improve. Brain fog is a bit like being drunk and it being harder to think easily. I assume it wears off after you wake as normal oxygen levels return to the brain.

What tips can I share with you. Find a soft warm glove for your weak hand. One that still allows you to grip the stair rail. Avoid cold at all costs. Even the weak hand outside a duvet might give rise to the same sensation. Try to stop your feet touching a bare floor, even a carpet, have slippers or similar near the bed.
It may feel daft wearing fleeces in the house but needs must.
Exercise when you can but not for too long. Too long may well trigger the pain alarm.
Lose the tension, lose some of the pain
2 options exist at the stage, surgery or psychology it seems. Hopefully one will come good and reduce the pain.

Simon

Nige
Omg
Dunno what else to say
Certainly can’t say anything useful
But you are in my thoughts

Nige

3 year anniversary today. The pain levels this week reached a new high, I had my weaker hand out of the bed holding my phone. No glove. That was enough to trigger 2 hours of constant pain where I found myself breathing to try to minimise it.
Deep Brain Stimulation research project is progressing but no dates. I would like to see the output of my pre op assessment and if the MRI has revealed anything. I did get confirmation this week that loss of speech is a possibility to add to the other risks. It is low risk though. It does seem that like traditional medicine, it might be a balance between pain relief and side effects.

I realised this last week how housebound I had become. I spent time in the garden, nothing major, but I felt different when I was back inside the house. Mentally refreshed. Even if you think you are coping really well with events and the severe pain, perhaps it’s only doing something ordinary and a bit of weak sun on the face that tells you perhaps it is having an impact.

I think it’s fairly obvious that my experience of cpsp is one where I am in a fairly small percentage. Perhaps i feel closest to Phil in his experience. Both of us are looking at operations. 18 months ago I would have dismissed the idea of it completely. Now, I am not sure I have another solution open to me. Increased medication means I would be disconnected from life. My mobility is suffering. I hope to set the wheels in motion next week to get a physio appointment. I want to know if there is an element of physical condition which a) adds to the mobility problems and b) if items have become taught, variably or otherwise, is that pulling on items and generating nerve signals/increased pain. If there is a physical side to it, what can I do about it.
I have survived 3 years, is that a positive. Yes but life is getting harder, slowly but surely. If DBS doesn’t work, what next.
I found this article on DBS. This was based on work at a Bristol hospital which has closed some years ago
https://www.sciencedirect.com/science/article/pii/S0304395909005302

Andrew

Three years today for you, and it is the last day of paid employment for me. Not so good, really.

Is Cathy Stannard still around, even though Frenchay Hospital has been closed for a while? No doubt you will have researched this and already know the answer. She has also reckoned that exercise helps, but that can be easier said than done.

Elsewhere the importance of direct sunlight has been emphasised. A good old blue sky is also to be welcomed. Yes, vitamin D takes a lot of the slack, but today is a nice day even if one were to spend it in the garden, away from the four walls. I have found that light can be awkward, especially outside when the sun is low and in the veg section at the local Asda. But it doesn’t break me now, and what doesn’t break me make me stronger. Therefore I do go out to ‘enjoy’ the sun, even when it is in the face, as it is when going south on the cyclepath in the mornings. I have learned to do what is right, rather that to follow how I feel.

I hope that some of the above helps in some small way, but I am very aware of speaking out of turn and without knowledge.

Simon

Andrew Cathy Stannard still around

Yes and her email is at the head of

Nige

Andrew I did get out in the garden recently. I found it uplifting, my mood improved, I had a bit more energy, more motivated. I completely agree with you. Next warm day, I will give it another go.

I suspect that there might be a gradual impact of not going out much, aside from the vitamin D aspect. Perhaps there is the feeling that I am on the whole ok but then something like time in the garden makes me realise that maybe that isn’t the case. There is ok but there is also better.

Perhaps as much as anything it’s distraction, brain just switches off for a bit and has some new challenges to consider. Such as trying to get a huge dandelion out of a raised bed. Not had those sort of challenges in a while. Bit of brain food for me, not so good for the dandelion.

I think there is always a nervousness with any surgery but I think brain surgery in particular is bound to weigh heavy.

I have been very lucky in that my employment still exists and will do at least until August. One of those real advantages of working for a big company with sick schemes. I am hugely grateful to them.

Pando

Nige I found it uplifting, my mood improved

When we’re cornered, broken, desperate, our instincts try to remind us of the healing power of the sun, and earth. How is it that we became so disconnected from these forces of nature, that we can barely find our way back? I wish I knew what I now know 2 years ago !! I wish you all the best, Nige !!

Nige

Pando I think in part, winter is partly to blame but I do agree with you. There is something just plain nice about seeing a robin (unless you are a worm) or a fish rising to take some food.
Pets possibly give some assistance too.

Yet nature itself is quite brutal in so many ways. It is uplifting for us in what are life and death struggles every day.

Nige

Day 1107 in the house of increasing pain.
What triggered it today, possibly the effort trying to get ready for the pain management programme meeting. Did that generate some stress ?
Who knows but 6 hours later, it’s still really unpleasant. I didn’t make the meeting and wondering if I will make another. Very fed up with a face screwed up in pain and so tired. Sleep apnea figures of 7.6 for obstructive and 4.1 for central so it wasn’t the worst quality sleep.
Have asked the sleep clinic if the research programme looking at the use of a cpap machine combined with the mouth guard (2nd best solution after a cpap machine) had any results.

Pando

Nige I don’t have answers, but I believe Earthing, Vitamin D panel, NIR panel in that order would help. I ground bare feet outside on lawn every day for 45 minutes. There’s no better healing than that in my opinion. I don’t like to know you suffer, so really hope it settles one day. ciao, Roland

Nige

I think when anyone started this journey that post stroke, we would be encouraged to tackle hypersensitivity with contact with various items. Re-educate the cns to relearn what items are and that the touch isn’t a danger.
I get there is some benefit to feet on bare grass. Can’t say really what it is but historically it would give a nice feeling.
Regrettably if I touch anything cool, let alone cold, my whole left hand side is going to be in extreme pain. I would struggle to stand after a min or two.

Maybe one for the summer. I will give it a go

EmeraldEyes

Nige I take it you’ve tried vitamin D?
Regardless of a good diet it might be that you don’t absorb enough vit D from food (a malabsorption problem), a malfunction as a result of your stroke. But then that sort of thing would surely show up in blood tests I would have thought.
We certainly don’t get enough sunlight this time of year, but even in fine weather you still may not be getting enough if you are laid up in bed half the time with CPSP.

You get Vitamin D from the sun and also:
oily fish – such as salmon, sardines, herring and mackerel.
red meat.
liver (avoid liver if you are pregnant)
egg yolks.
fortified foods – such as some fat spreads and breakfast cereals.

At this point you probably know and have all this, I just thought I’d put it in anyway for the benefit of anyone reading this who are unaware. But one thing it won’t cure is the pain of osteoarthritis, my thumbs are a testament to that 😔

Lorraine

Nige

EmeraldEyes I think I need to get back on it Lorraine. My time outside has reduced a lot as the cold just makes it so difficult. Even if I did I guess the sun rays are so weak it might not make much difference.
Not had vitamin D mentioned as an issue in any of the blood tests. I had a spell when I was having so many I was surprised there was any blood left.
Historically my issue has been potassium with my adrenal gland being faulty, very low readings at times.
I wish i had been told about the sodium issue that came with the faulty gland. I loved crisps as well and twiglets. It was one of the things you knew it was Xmas when the twiglet tubs were in the shops. I wonder looking back if they were, at least in part, responsible.
These should do ?

Andrew

I agree with EmeraldEyes with regard to vitamin D and whether/how it is absorbed. Michael Mosley talked about this at length, relating the amount of D in the body to the gut biome, the immune system in general, and he also recommended fermented foods such as yoghurt (I make my own), kimchi (likewise), soy sauce (bottle, I’m afraid, but it’s great on stir fries). The last two contain salt and therefore need to be watched, but there is a huge amount in processed foods and it’s often masked with a fair bit of sugar. So I have ditched as much processed food as possible. I suspect that my salt intake has reduced despite the kimchi and the stir fry. Indeed, the doc is often saying that blood tests indicate that I am right at the bottom of what is acceptable despite this regime, and the taking of oxo cubes with ¼ tsp of salt an hour before the test on the latest occasion! To set this into context, prior to the stroke I did a lot of fast cycling. I sweated a lot, ate big bags of crisps (S&V, Ready Salted for preference) and even then I rarely dipped below the threshold as far as I know. On rare occasions I did, and it was accompanied by a mild headache and a metallic taste in the mouth - my wife did too. Quite obvious eventually. Both went after a bag of crisps almost immediately, and on those occasions only did I have the “Oh that’s really good” response. So it was not psychosomatic. Despite all that, I haven’t experienced that type of headache and taste since the stroke, and I guess that I haven’t sweated enough. Yet.

Pando

Nige

That’s a start : Just think, you would need to eat between 400 and 666 grams (14–23.5 ounces) of wild salmon to get 4000 IU of vitamin D !

Andrew

This going to be bit geeky or nerdy or both - I can’t tell the difference. Apologies in advance. But let others argue!

At maximum power in the summer we will attract a solar energy of about 1200 W/m2. Obviously it is often lower due to cloud cover and the time of day. From what I can make out, today’s maximum was only 217 W/m², and the next few days are likely to be, in turn,180, 137, 95, 135 and so on, with a whopping great 408 a week on Saturday (i.e.10 days’ time). Practice your sunbathing then! This last one might represent the theoretical maximum at this time of year. The temperature variation profile is not too far from being quite different, and depends on winds and air masses wafting in as well as the radiant heat of the sun.

There is not a lot we can do except to follow the predictions online. For the above numbers I did a quick google search for “watts per m² bristol”, but I usually follow martynhicks.uk (not a typo) for current info, which is solely for Bristol folk. The reason for the latter was simply to determine roughly what to expect when cycling to work pre-stroke - do I wear a coat, or how many layers, etc..

Simon

Andrew
One for @Pando !

Pando

Andrew

I use an app called Dminder to know when the next vitamin D opportunity from the Sun arises ; it tells me in 13 days !!! hooray. Although the Sun has more to offer us than D.

Otherwise ; DIY your own app

Creating an app that estimates how much vitamin D you get from sun exposure involves several factors, including your location, skin type, time of day, duration of sun exposure, and the amount of skin exposed. Here’s a basic outline of how such an app could work:

Key Features:

Location Tracking: Use GPS to determine the user’s location to calculate the UV index.
UV Index Data: Integrate with a weather API to get real-time UV index data.
Skin Type Input: Allow users to input their skin type (Fitzpatrick scale) to estimate vitamin D synthesis.
Time and Duration: Let users input the time of day and duration of sun exposure.
Clothing and Sunscreen: Consider the amount of skin exposed and whether sunscreen is used.
Vitamin D Calculation: Use a formula to estimate vitamin D production based on the above factors.
Recommendations: Provide personalized recommendations for optimal sun exposure.

Example Workflow:

User Input:
- Location (auto-detected or manual input).
- Skin type (I-VI on the Fitzpatrick scale).
- Time of day and duration of sun exposure.
- Amount of skin exposed (e.g., face, arms, legs).
- Use of sunscreen (SPF level).
Data Processing:
- Fetch UV index from a weather API.
- Calculate effective UV exposure based on skin type and sunscreen use.
- Estimate vitamin D synthesis using a formula like:
  [
  \text{Vitamin D (IU)} = \text{UV Index} \times \text{Skin Type Factor} \times \text{Exposed Skin Area} \times \text{Time (minutes)}
  ]
Output:
- Display estimated vitamin D production in International Units (IU).
- Provide tips for safe sun exposure and vitamin D optimization.

Example APIs:

OpenWeatherMap: For UV index data.
Google Maps API: For location tracking.

Example Formula:

A simplified formula for vitamin D estimation might look like this:
[
\text{Vitamin D (IU)} = \text{UV Index} \times \text{Skin Type Factor} \times \text{Exposed Skin Area} \times \text{Time (minutes)}
]
Where:

Skin Type Factor: A multiplier based on skin type (e.g., 1 for Type I, 0.5 for Type IV).
Exposed Skin Area: Percentage of skin exposed (e.g., 25% for face and hands).

Example Calculation:

UV Index: 5
Skin Type: III (Factor: 0.75)
Exposed Skin Area: 25%
Time: 30 minutes

[
\text{Vitamin D} = 5 \times 0.75 \times 0.25 \times 30 = 28.125 \text{ IU}
]

Additional Considerations:

Health Guidelines: Incorporate guidelines from health organizations (e.g., WHO, NIH) for safe sun exposure and vitamin D intake.
User Education: Provide information on the importance of vitamin D, risks of overexposure, and how to balance sun exposure with skin protection.

Development Tools:

Frontend: React Native, Flutter, or Swift for mobile app development.
Backend: Node.js, Python (Django/Flask) for server-side logic.
Database: Firebase, MongoDB for user data storage.

Example App Name:

D-Sunshine
Vitamin D Tracker
SunSafe D

This app would help users optimize their sun exposure for vitamin D synthesis while minimizing the risk of skin damage.

EmeraldEyes

Yes, they would do. I’m only guess here, it might take a couple of days to feel any positive effect. Or it might take a couple of weeks to feel any significant difference. I know when I was low in Folic acid, it just took a few days being on them before I was feeling the benefits of it. But that was a high dose prescribed by my gp. Fingers crossed you feel some reduction from your pain.

Andrew

Vitamin D and Potassium - seem good to me. Obviously the doctor needs to know just to check.

Nige

Pando wow that is a lot. I would prefer not to take a tablet but it does seem much easier

Scroll-Me :)\<-&->


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