Exercise v Rest

[meandthecat]

I'm thinking Predator v Alien here as both sides of the equation do damage to me or in Bubbles pithy pitch 'mass-destruct my ass' (Oh, The Wire...so good).

I work full-time, its a physical job but I have a lot of discretion as to what I do and when and so I can pace really well. The routine of the job is a lifeline, I like what I do and it allows me to cope. Sometimes I blow it and crash but there is enough slack for me to take it slower and build back up.

I've done this since I got ill, 10yrs ago and for the last few years have been close to pre-ME; But I can't stop. Like a shark can't stop swimming. I am between a rock and a hard place. If I do too much I crash if I do too little I slide into pain and POTS.

Xmas, an enforced holiday used to be tough because of all the family stuff and I struggled, now I handle it really well and enjoy it and can poottle about and feel good where once I would have been sliding into an outer region of hell. Weekends were long enough to do that in the early days.

I went back to work today, for a half day. I am in bed now feeling like I've been beaten up. After 4 days how?

People don't understand why I don't take holiday, it physically hurts. I have tried to find ways to mimic what I do at work outside of it but its so hard and never as effective.

I think that I am riding the edge of PEM all the time and Xmas seemed like a good opportunity to see if I could back off and settle into a place of more ease. Yeah well that didn't pan out.

I will return to the day to day pragmatism that has got me this far and trust to a sort of intuitive wisdom but there is this niggling feeling that it's like feeding a beast......fine until you run out of food.

This pattern of activity management operates within the day as well, I build up to more vigorous work, to suddenly change from rest to full on leads to excessive symptoms and reduced capacity. I keep my HR below 120 and lie down as soon as I get in, this seems to kick start recovery.

I hate this disease and what it does, I need to find a way off of this treadmill
.........CFS........ more like WMD


Oh and seasons greeting, maybe Santa will bring a cure next year.

 

[ahmo]

 

[Valentijn]

@meandthecat - Can you try to get some better medical management of your OI problems, so that you don't have to rely on activity so much to keep it under control?

 

[meandthecat]

Can you try to get some better medical management of your OI problems, so that you don't have to rely on activity so much to keep it under control?

I don't have any medical support, the local GPs won't even say CFS yet alone listen. I have had to find my own way which is limited.

I use DHEA, B12, vit C, D, carnitine and epimedium as a core supplement support and it has worked but ..I need to do something different.

I had been thinking of trying to engage with the doctors again but...I don't know how.

 

[hellytheelephant]

I see you are in the UK.Your local ME group might have a list of GP's who have some understanding of what ME/CFS is. That was how I got diagnosed back in 1993.- I changed Drs and found one who agreed with my diagnosis.

 

[meandthecat]

Thanks for the thought helly' . The nearest group is frome and they do have a doctor there but it it a bit far for me to register with. I haven't heard of anyone in Trowbridge, and Bradford on Avon are ME deniers, I suspect it is a practice policy.

This is such an intense symptom set I am beginning to wonder if it is something else. It is an intense ache under my upper arms and along the inner thighs. My energy is quite good and cognition is holding up but the ache is neurological, a roiling pain a bit like a dead-leg or for the guys out there our own particular vulnerability.

 

[hellytheelephant]

@meandthecat Oh,yes, far too far too go. ' ME deniers'!! I think in a hundred years time people won't believe how seriously ill people were treated by many Doctors in 21st century Britain!!!

Wish I had answers...but we are a bit stuffed as far as treatment goes being in U.k, aren't we?

Wishing you well for 2016

 

[MeSci]

Thanks for the thought helly' . The nearest group is frome and they do have a doctor there but it it a bit far for me to register with. I haven't heard of anyone in Trowbridge, and Bradford on Avon are ME deniers, I suspect it is a practice policy.

This is such an intense symptom set I am beginning to wonder if it is something else. It is an intense ache under my upper arms and along the inner thighs. My energy is quite good and cognition is holding up but the ache is neurological, a roiling pain a bit like a dead-leg or for the guys out there our own particular vulnerability.

Could your pain perhaps be in the lymph ducts? Have a look at the diagram on this page and see whether your pain corresponds to the ducts near the axillary and inguinal lymph nodes. Pain there is not uncommon in ME/CFS, and maybe it can be relieved through lymphatic drainage? The fact that it is worse when you are inactive makes me think that this may be due to the lack of drainage from squeezing by skeletal muscle that you would get when active. If so, you might be able to just do certain exercises to bring about such drainage without overexerting yourself, or try manual drainage.

There is another page on the lymphatic system here.

 

[meandthecat]

Thanks MeSci. Yes I had wondered about lymph with the unusual pattern of pain, certainly the axilliary section corresponds to the chest location though the worst pain is in the arm. I have never been sure of how far the lymphatic system extends beyond the larger vessels. When I first became ill I had two lumps in one thigh, below the inguinal crease, the GP was curious, the consultant dismissive, Fat deposit he pronounced as if a judgement both of me and my doctor.( she was nice but emigrated to Oz on the day I was diagnosed, seemed a little extreme!)

As ever with ME hard to tell what's going on and based on past experience unlikely that a doctor will make it any better.

I sometimes think that I would get better healthcare if I lived in a 3rd world country; but if 'country' were defined not as a geographical entity but an experience shared with others, coexisting and interpenetrating, a waxing and waning of influence, then I already do.

 

[MeSci]

Thanks MeSci. Yes I had wondered about lymph with the unusual pattern of pain, certainly the axilliary section corresponds to the chest location though the worst pain is in the arm. I have never been sure of how far the lymphatic system extends beyond the larger vessels. When I first became ill I had two lumps in one thigh, below the inguinal crease, the GP was curious, the consultant dismissive, Fat deposit he pronounced as if a judgement both of me and my doctor.( she was nice but emigrated to Oz on the day I was diagnosed, seemed a little extreme!)

As ever with ME hard to tell what's going on and based on past experience unlikely that a doctor will make it any better.

Yes - I wouldn't advise going to a conventional UK doctor about the need for lymphatic drainage. There are natural practitioners who will do it, or you can learn how to do it yourself, e.g. from YouTube, so I understand. (I am not speaking from experience, just what I have read and heard).

I mentioned lymphatic drainage to a GP once, just talking about how it happens naturally, and sometimes doesn't, and she immediately assumed that I was talking about doing it manually and dismissed it as controversial!

 

[meandthecat]

Having brushed up on the lymphatic system, it maybe that there is something, but I have no fluid retention or swollen nodes.I do quite a bit of exercise and maddeningly it doesn't seem to reduce the pain I feel from the physical work. I can remember a time when the first few days of a job would leave me a bit stiff then it was fine. Yearly jobs would stay like that but with more regular jobs the body gained a tolerance. Now every job is as if for the first time.
The week before Xmas I drove down to see family, it is a 2hr journey. That is alot for me and my muscles really stung after that...well I remember the pattern of pain was similar to this latest lot but there was over 2 weeks in-between with no particular pattern.

Could the pain from driving have been suppressed by my normal pain, re-emerging after the long rest after a short drive to work. Alternatively have I been probed by aliens......that was the sarcasm of despair....just in case....

 

[MeSci]

Having brushed up on the lymphatic system, it maybe that there is something, but I have no fluid retention or swollen nodes.I do quite a bit of exercise and maddeningly it doesn't seem to reduce the pain I feel from the physical work. I can remember a time when the first few days of a job would leave me a bit stiff then it was fine. Yearly jobs would stay like that but with more regular jobs the body gained a tolerance. Now every job is as if for the first time.
The week before Xmas I drove down to see family, it is a 2hr journey. That is alot for me and my muscles really stung after that...well I remember the pattern of pain was similar to this latest lot but there was over 2 weeks in-between with no particular pattern.

Could the pain from driving have been suppressed by my normal pain, re-emerging after the long rest after a short drive to work. Alternatively have I been probed by aliens......that was the sarcasm of despair....just in case....

I wish I knew (not about the aliens ). Hope you find the solution.

 

[Effi]

When I first became ill I had two lumps in one thigh, below the inguinal crease,

hi @meandthecat (btw I just noticed your username is not Mean And The Cat - always read that wrong )
just wanted to chime in re:lymphatic drainage. I get manual lymphatic drainage twice a week and for me it is a lifesaver. It's interesting what you say about the inguinal crease. That's about the place where in my case there's always a ton of buildup of lymphatic waste (or whatever you call it). It fluctuates, but sometomes builds up in as little as 24h, and my practitioner says it feels like clay or sometimes almost like a brick. It is manually 'pumped out'. I have no idea what would happen if I didn't get this removed on a regular basis, but the inexplicable lumps you're talking about don't sound too strange to me.

Doctors know nothing at all about the importance of the lymphatic system and usually dismiss it as hocus pocus. But it's not. I'm not saying it's gonna help everybody, but it could definitely be beneficial to some.

If you want to try it out on yourself (there's prob. things online, as @MeSci said) there is one very important thing you should know: whichever part of your body's lymphatic system you want to focus on, ALWAYS start by what they call the 'opening' of your lymphatic system. This is located in the lymph nodes on your clavicle bone, in/around your neck and on the side of your face. This stimulates the entire system, and then you can move on to specific other spots, like e.g. the inguinal crease (laying down, with your feet closer to your body so your knees are pointing upwards - sorry for the clumsy explanation). After a massage make sure you drink enough fluids.

 

[MeSci]

After a massage make sure you drink enough fluids.

That's because the lymph drains into the bloodstream, increasing blood volume and thus increasing the amount going through the kidneys, hence greater urine output, isn't it?

Whilst I don't do deliberate lymphatic drainage, I have long observed that when I have been carrying out an activity that involves a lot of bending I have to pass a lot of urine.

I've tried mentioning this to doctors, but they just look either blank or contemptuous.

It makes me wonder - don't they ever observe things in their own bodies?

 

[Effi]

@MeSci I think it's a matter of theory vs practice. Doctors only know the theory, which there is too little of because there's hardly any literature about it - just a couple of months ago they found out there's lymphatic vessels in the brain! So basically they know nothing about it. Practitioners might not be able to explain why something happens, but they do see similar things happen in their clients, and most of all they see an instant positive effect. I'll take effect over theory any day.

One example: a practitioner once told me that her son has recurring ingrown toenails and regularly needs surgery for that. The days after the surgery she always does lymphatic drainage on the area around the treated toe, as this is supposed to enhance healing. His toe always heals so quickly, which leaves the doctor puzzled every single time, but whenever she says how she helped, he shrugs and completely dismisses it.

Another example about people who have lymphedema after cancer treatment. When the lymphatic nodes are very damaged by the treatment, and patients have extreme lymphedema, most of the time doctors say that lymphatic treatment is useless because the lymph nodes are destroyed. But apparently in practice it is always possible to work around the destroyed areas, making the lymphedema smaller. The lymph fluid tends to find its way around the destroyed area and new lymph vessels develop. Granted, the lymphedema keeps coming back because the nodes are destroyed, but at least the patient's life quality is much improved. It's so sad to see how many doctors don't seem to understand how much life quality is worth...

 

[meandthecat]

Thanks Effi. Mean andthecat is my persona when encountering doctors, perhaps Growltiger should be the name.

It makes me wonder - don't they ever observe things in their own bodies?

I think that they have been taught not to trust in their own experience. Usually they seem to observe me only as a reflection in their computer screen, a distraction from the truth present in the code.

I'll experiment with lymphatic drainage, its odd, I don't do much but seldom take time for me.

 

[Effi]

Mean andthecat is my persona when encountering doctors, perhaps Growltiger should be the name.

 

[panckage]

I am between a rock and a hard place. If I do too much I crash if I do too little I slide into pain and POTS.
...

People don't understand why I don't take holiday, it physically hurts. I have tried to find ways to mimic what I do at work outside of it but its so hard and never as effective.

This is such a strange symptom... I think for me though I figured it out. My brain fog is so bad that if I am home off work I do absolutely nothing. My brain is empty and I just lie on the couch existing. With my brain fog when I go to work on a Monday it feels like that last day I worked could have been in another lifetime, even though it was just 2 days ago. Its such a weird thing but going to work forces me to use my memory and do things, to have normal experiences so I remain kind of OK. But within a couple of days not working those experiences feel so distant they don't even feel a part of me... Its so friggin strange!

Apologies if what I have written makes no sense

 

[meandthecat]

This is such a strange symptom... I think for me though I figured it out. My brain fog is so bad that if I am home off work I do absolutely nothing. My brain is empty and I just lie on the couch existing. With my brain fog when I go to work on a Monday it feels like that last day I worked could have been in another lifetime, even though it was just 2 days ago. Its such a weird thing but going to work forces me to use my memory and do things, to have normal experiences so I remain kind of OK. But within a couple of days not working those experiences feel so distant they don't even feel a part of me... Its so friggin strange!

Apologies if what I have written makes no sense

It makes perfect sense to me, about years 3 to 6 ish that was me. I shudder to think of it. I used to volunteer at a hospice making tea, it was calm and undemanding and I could walk on the flat and rest when I needed and it helped to manage my activity. It did get too much in the end.

Oh and if I say that my cat is called Gus then the comment about Growltiger makes more sense.

 

[u&iraok]

People don't understand why I don't take holiday, it physically hurts. I have tried to find ways to mimic what I do at work outside of it but its so hard and never as effective.

Me too. I absolutely need to stick to a routine. I've been wondering if working or socializing are harder on me. I'm thinking that if I didn't have to work I'd have enough energy to socialize but there is something to a calm routine. Work can get stressful, though, but day to day, talking business is easier than talking socially and the unpredical nature of socializing and the noise and movement are difficult. I like socializing better than I like work, though.

Driving to Florida and staying in a hotel for a few days this weekend. Alternately dreading it and looking forward to it. I will be laying down in the back seat most of the way and taking a lot of my own food and water which will help.