Crowhurst: Paralysis Study - 46 Patient Responses

[Firestormm]

Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis

GREG AND LINDA CROWHURST (AUGUST 8TH 2013).

Synopsis

Paralysis is a symptom that is rarely highlighted in the literature for ME, yet is found amongst the most severely ill ME population and even some of those not so severely affected.

My wife has experienced it for almost 2 decades, without adequate exploration, alongside exposure to denial and dismissal, ignorance and neglect as well as harmful treatment.

We wanted to find out if there was anyone else with a similar experience to my wife's or if she was a rare and very severe case. We wanted to highlight the seriousness of this symptom and ask why it is being ignored and down played not only by the medical profession, with its inappropriate focus on fatigue and the psychosocial response, but also by the main charities, none of whom, flag it up as a main symptom.

This qualitative research study indicates that there are significant others experiencing apparently similar paralysis and that my wife is not unique. It begs the question why are they being neglected and why is there not urgent research into the understanding and alleviation of this devastating physical symptom? What is the mechanism, are there different mechanisms at play and are there any possible ways to treat it?

Research

This understanding and frustration led us to ask others for their experiences. In all we received
46 responses, which all confirmed varying degrees of transient awake or sleep paralysis.

Unfortunately only 23 were able to confirm their agreement for publication...

Conclusion

Clearly there is some similarity between most people's experience in this research sample, something is occurring which is causing people either to be totally and/or partially unable to move or function. This is such a serious physical symptom. It deserves more attention and medical investigation. It requires specialist input from medically knowledgeable consultants.

What is also needed, however, is serious physical research in this area and a change of direction and attitude, not least from the charities, who unbelievably, do not even identify paralysis as a symptom on their main symptom lists. They need to start speaking up about the true physical dysfunction and symptoms of genuine ME.

Paralysis is not just tiredness. Paralysis in ME is frightening and regularly incapacitating for people and very real. It is long over due for respect and biomedical investigation.

It leaves us still asking how can such a serious, severely disabling symptom be so dismissed, neglected or misinterpreted? How can people be left to cope for decades in this state, often without adequate health or care support? We do not understand and can find no justification for it.

Unfortunately the new UK ME Research Collaborative, supported by mainstream charities, seems to be a step in the wrong direction for people with ME, giving more apparent acceptance and power to the psychiatric paradigm and not clearly separating ME research from psychiatric fatigue research.

This is a huge mistake, which will potentially leave the most severely affected people with Myalgic encephalomyelitis still without the much needed validation of a clear, separate definition from fatigue, that is essential in order to honour and thereby accurately and fairly investigate their serious physical illness, particularly the more serious symptom of paralysis.

What is required is a politically effective voice, across the board to represent the most severely affected, to ensure that people with Very Severe ME have a genuine voice and fair treatment. It is hoped that the newly created Severe Myalgic Encephalomyelitis Understanding and Remembrance Day on August 8th, each year, will be a focus for this much needed voice and have a powerful impact.

 

[Nielk]

Are there any studies of the severe ME patients? I think that Greg makes an excellent point here. I, myself have never experienced this most disabling symptom but, I know of other patients who do. How can we ignore this?

 

[alex3619]

I have had several episodes of sleep paralysis. I have also had pain so severe that the body part went totally numb ... no sensation at all. This was my right index finger. Though this is technically not paralysis there was a greatly reduced ability to move that finger, or to figure out what it was doing, so I essentially could not use it.

 

[Seven7]

I have experienced Paralysis, and I am not what you would consider a very severe case of ME, I Haven't have this symptom in a while, I read is a symptom of low potassium. I suffer also from OI. So since I have been supplementing everyday and making sure I get potassium IN MY CASE. That has resolved the worse, Also I have learned to pace better.

 

[Valentijn]

I had one major muscle stop responding, to the extent that I couldn't lift my right leg at all. This was after way too much walking and standing in an airport, and didn't effect any other muscles. Maybe something similar going on though?

 

[justy]

I agree wholeheartedly with Greg and Linda Crowhurst that more needs to be done to investigate severe M.E and its symptoms. My experience is that it is common for the more severe symptoms to be played down or even denied by Doctors and M.E groups/charities.

I have never been severely paralysed or bedbound but did have about 3 years at the moderate/severe end and some of the symptoms were very frightening and it was hard to find any information about them at all - or i was left with the feeling that they were not part of having M.E. Frequent sleep paralysis was one of them - not the same as daytime paralysis by any means, but very disturbing. My experience was that i would wake up, many times a week at night completely unable to move for minutes at a time, whilst at the same time having absolutely no idea where or WHO i was. This loss of identity was more profoundly terrifying that being unable to move- in fact beyond loss of identity, i wasnt able to comprehend what ANYTHING was.

Another severe symptom that i hadwhich was very distressing was a kind of movement disorder which can only be described as a bit like having a short fit, where by if i had overtaxed myself (at this point speaking could cause it) my arms or legs or torso would fling out in weird directions. Although i had no concsious control over these movements i could feel that it was about to happen - like a build up of energy in the torso which then needed to dissipate.

Another variation on movement disorder was when my feet would curl up in a spasm - ususally only at night and when i had stayed up too late - making it impossible to get to sleep. The whole foot would flex, then be rigid for a a minute or two then go slack, but the problem was this could and did happen every few minutes for two or three hours at a time.

It's about time these types of symtoms were recognised as being part of M.E and that research was done into them and people were given more information and support to cope with them - i was left like most struggling alone while my GP scratched his head and sent me to various consultants who looked at me like i was mad!

Good on Greg and Linda for drawing attention to this issue.

All the best,
Justy.

 

[Little Bluestem]

I have never had true paralysis, but I have never had severe ME. When I was at my worst, trying to keep my job, I would occasionally have a weird experience.

I would be lying in bed and some place on my body would start to itch. I would decide that it was too much effort to scratch it and try to ignore it. Itches are very difficult to ignore, so I would eventually decide to scratch it. It would take a lot of effort and mental focus to get my arm and hand to move and scratch the itch. It seemed it was as much my brain not wanting to tell my body to move as my body not wanting to move.

There may well have been many other nights that it would have been difficult to move if I had tried, but I had no reason to try.

 

[taniaaust1]

I can see people talking about 3 completely different things here. I say that as Ive had them all and they were different including paralyses.

I had paralyses during the time I was bedridden for 9mths. It was scary and I honestly thought I was going to die. The paralyses must be neurological as it was like the messages I was sending my body wasnt being picked up at all, I couldnt even move slightly. I'd be laying in bed, completley helpless, looking down at my hand, trying so very hard to move my fingers or even just one finger and they wouldnt work at all, nothing would move. All this is one of the reasons why I believe Im at high risk of death if I crash again down to that. I had feeling in my fingers but like no response happening in them to my brain.

It wasnt a case of them being numb or in pain. With these episodes which could last a long time (by this I mean compared to paralyses of a sleep paralyses state), there was nothing at all I could do. I'd have to just wait to come good again, whenever that was going to be. Fortunately the bouts I had of it only lasted a few hours at the most. It was like having to wait for a worst ME crash to be over (thou a lot of the time I was comatose so didnt even have awareness I couldnt move). I was only being conscious for 20-30mins some days. (I was so close to dying from ME). This kind of paralyses was not due to me being half asleep.
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To the subject sleep paralyses thou, that is different again to what I'd call ME paralyses and sleep paralyses is COMMON among the normal populaton. I teach lucid dreaming (LD) and astral projection (OBE) to people online and it is basically the norm in those fields to happen to people. It happens when someone is caught between a sleep and a wake state, in the transitation state between.. the body has gone to sleep but the mind still has its waking consciousness, so is to do with brain states rather then a neurological disease thing. This is a natural physiological thing which is supposed to paralyse you while you sleep, otherwise you'd be acting out physically all your dreams. This state keeps you safe while you are dreaming, its completely natural.

If someone isnt aware of what sleep paralyses is and doesnt realise that they are expereincing a state their body is in each night but just awarely during transitioning states, yes it is then scary to them but to many of us who use that state for what we do eg those which do OBE and LD, its a state we can be aiming for.

Thing is with typical sleep paralyses, you are not going to be left in that state, it breaks as soon as you leave the transition state. It can be broken too if someone doesnt want to wait it out, with MUCH EFFORT to do so (you may need to put ALL your effort into it) by focusing on either a single toe or a single finger and keep trying to wiggle it till you break the state. (focusing on your body or doing something like getting out of bed, will not break this state if deeply in it) you need a small body part to try to move due to the effort it will take to move it.

It wouldnt surprise me at all if ME people get stuck in sleep paralyses transition states more then the normal population due to the fact many of us are tired (or sleepy exhausted) and hence those of us who have the illness severe are often going to sleep and waking up more times then most people do, so more opportunties to experience and get stuck in such states. We often have a lot more trouble waking up then ordinary people do (or falling asleep due to pain or whatever) so that too would increase chances of the sleep paralyses state being experienced.

Note.. with this kind of paralyses, halluncinations can be happening too.
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Itches are very difficult to ignore, so I would eventually decide to scratch it. It would take a lot of effort and mental focus to get my arm and hand to move and scratch the itch. It seemed it was as much my brain not wanting to tell my body to move as my body not wanting to move.

I dont know if its the same as what Ive experienced where I experience something which I'll describe as a type of exhaustion in which you really really want to do something but one is so exhausted that one doesnt, .. its a brain thing to me. LIke a lack of motivation but far more then that as its exhaustion on a mental level. The mental effort of doing something overrides ones will to do it.

I once peed myself in such a situation, cause I couldnt bring myself to get up and go to the loo, I really wanted to, but I couldnt bring myself to do it..due to the "mental" well I had physical too, but this was mental exhaustion which was like the straw which broke the camels back and caused me not to do what I wanted to do. I couldnt will myself to do it. I was so much effort mentally to get myself to the loo that I just peed where I was and stayed in the wet clothes due to my exhaustion. (till I was recovered from my crash enough to be able to mentally get myself together and get up and fix things). I could of moved if I had the willpower too but couldnt get it.
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Anyway... I just want to say I think all those three things above are different with different causes coming in for each of them. Same goes with feeling paralysed due to weakness. I can say the paralyses Ive had in the past was not caused by weakness (thou I was very weak at the time). Ive had weakness were I struggle to move too but that is completely different again and not what I'd call a true paralyses state which can happen in ME..

These issues should all be separately defined and each individually studied (except for the sleep paralyses thing as that is completely understable in our situations and even healthies get it, I dont think that would lead to any answers except shows we are going in and out of sleep states often etc).

 

[taniaaust1]

It is horrific how these symptoms are not being studied and makes no sense to me that things like paralyses isnt. I too think our ME/CFS associations often avoid talking about severe symptoms due to being concerned they will scare people but the thing is by doing that, the severe ME group is being ignored what they go throu.

Has anyone got gregs email or contact details. (I used to contact him many years ago on youtube as Lindas case was a lot like my own way back, she was the first person I came across who I could relate ME wise too .. Ive no idea if he still uses it. I dont go there anymore due to my dialup connection, I cant watch things there).

 

[Firestormm]

taniaaust1 link to 'Stonebird' which is Greg and Linda's website is in their name at the top of this thread. Or click here. I expect there are some contact details. If you find a link to the research we are discussing (I couldn't on a quick look), can you post it here? I found this research elsewhere on Facebook. Thanks

 

[taniaaust1]

taniaaust1 link to 'Stonebird' which is Greg and Linda's website is in their name at the top of this thread. Or click here. I expect there are some contact details. If you find a link to the research we are discussing (I couldn't on a quick look), can you post it here? I found this research elsewhere on Facebook. Thanks

ah thank you.. doh, I feel so dumb. I didnt think to click that link to look there.

 

[Firestormm]

ah thank you.. doh, I feel so dumb. I didnt think to click that link to look there.

Nah. It's my bad

 

[Little Bluestem]

I dont know if its the same as what Ive experienced where I experience something which I'll describe as a type of exhaustion in which you really really want to do something but one is so exhausted that one doesnt, .. its a brain thing to me. LIke a lack of motivation but far more then that as its exhaustion on a mental level. The mental effort of doing something overrides ones will to do it.
[snip]
I could of moved if I had the willpower too but couldnt get it.

I think it was more than a willpower issue. Even when I decided to scratch the itch, it took a lot of effort to do so. This occurred after I had gone to bed and before I went to sleep. My body had let down for the day. I think that my muscles and nervous system were both so exhausted that that they were barely able to function. This didn't scare me, it just annoyed me.

 

[Hell...Hath...No...Fury..]

This is something i've often wondered about as i rarerly hear people talking about this, myself included and i suffer with it. I was paralysed almost constantly for the first 18 months to 2 years. I occasionally could wiggle my big toe or a finger but that was about it. Since then over 15 years i've had spells of it that last weeks st a time but never like in the beginning. Though weeks is more than enough when you live alone! I know exactly how long i can survive without adequate fluids, food etc without dying just through experience. Unfortunately this is a very long time!

The sleep paralysis is something totally different and not an ME symptom. This is something that anyone can experience and is really disturbing in itself if its a negative experience. This only happens to me a few times a year thankfully.

But its really nice to see a post about paralysis. I use the word nice loosely but brain won't let me think of another word.

 

[Nielk]

I wonder if this symptom is not due to the possible connection with post polio? See thread below

http://forums.phoenixrising.me/index.php?threads/post-polio-fatigue-vs-cfs-me.19751/

 

[lansbergen]

I wonder if this symptom is not due to the possible connection with post polio? See thread below

Anything is possible but I doubt very much it is in my case.

 

[ithought]

I hate this symptom especially when I am somewhere like hospital and they have no awareness of it.