Do You Sleep Better When...

By the way, it's ME/CFS, not CSF - CSF usually stands for cerebrospinal fluid, whereas CFS is chronic fatigue syndrome.

 

That really is a problem. It's the patient's responsibility to communicate all possible symptoms and responses to factors that might be useful in diagnosis. Patients generally aren't medical specialists, so we might add things that aren't of use, but that's better than failing ot add things that would be useful. It's the doctor's responsibility to listen. Unfortunately, the medical system doesn't give doctors the time required to listen properly.

When I first developed this mysterious illness, I mentioned that I found myself signing deeply, frequently, which was a new symptom. The doctor got angry at me for that, which probably killed any possible help from her. I suppose she only wanted symptoms that were common and useful for instant diagnoses. I didn't know what symptoms might be useful for diagnosis. I still have that symptom (24 years later), so it means something is wrong. I expect that someday it will be helpful for diagnosing malfunction of the vagus nerve or whatever ... but not today. Today it only makes doctors angry.

I also had the experience of a doctor getting angry because I pulled out my "don't forget to mention" list, one item on which was "brainfog" which makes it hard to remember to bring up items without such a written list.

Should doctors be getting anger management courses?

 

Re 'I found myself signing deeply' do you mean sighing?

 

Not sure if that is generally true. Personally, I've been sleeping like a baby ever since I got ME/CFS. It's just that sleep doesn't improve my fatigue/sickness when I'm in PEM. Now that I'm coming out of it, I'm reverting to sleeping no more than 6 hours. But I understand insomnia or disturbed sleep is a part of symptom for some others. So, it seems to me that ME/CFS effects sleep differently for different patients.

I once tried a sleep aid before to see if that made difference to my ME/CFS. It made me feel much worse next day despite sleeping more. I tried again recently now that I'm mostly out of ME/CFS, and it made feel bad the next morning as if I was in PEM. I swore them off since then.

 

Yes, exactly. Ah, ‘the list’ lol.
That is why the doctor thinks it’s me, the mother, who is pushing for all this. The doctor said to my daughter ‘why am I only hearing from your mother’. The child struggled to respond, choking back the tears—‘because my Brian doesn’t work very well’. In Trying to make things comprehensive and organized, I have become the problem so to speak. One doctor then told the other doctor who she referred us to in adolescent medicine, and the new doc came into the appointment with signal bias and judgment. She could have given us the benefit of the doubt. Now I feel that all future appointments are going to be a waste of time. I absolutely do not want my child experimented upon, given medications that she doesn’t need.
The pediatric neurologist said “Why is a diagnosis so important to you? I do not want to diagnose her because it will hold her back”.

Isn't that the first step?

The mother, who is ever watchful over her chick, is the best source of information for the medical staff. My job is to tell them, everything I’ve noticed, however small, it’s their job to put that together.

Ego management course rather.

 

Ye

 

This just makes me so bl**dy angry on your behalf. I know some doctors are great, but really, so many of them just behave like complete arseholes

Its a disgraceful state of affairs

Dont know if you've heard of him but Dr Nigel Speight is a fantastic Dr for children with ME. Anyone here know if he's still practicisng?

Dont feel you need to reply @Aldebaran's Star , save your energy.
I cant do much to help but am standing with you against these ruddy dimwits!

 

Wow, thank you. @JemPD

I shall check out that doctor at once.

 

I was just reading up on Dr. Speight..... @JemPD

Holy sh@t!

Maybe they think I have FDIA - Factitious Disorder Imposed on Another. (Munchausen by Proxy)


That makes sense, why they treated us that way...That's a good one

I guess I should expect a visit from child services then.

 

@JemPD
Okay, I am processing this. Went from sheer laughter to a knife in the heart.

You know, my daughter suffered alone for a long time. She did not know how to communicate what she was going through, I think she didn't really understand it herself. I thought it was normal adolescence, emo teenager PMS etc. I gave her a hard time with things and pushed her to try to do better. How strong she was, because she did push and struggle--all alone.

Here comes the attack...I seem to have developed an acute anxiety attack when I think about her and how much we need help. I have always been a calm and collected person. This is unpleasant.

 

Yes. That seems to be a word easy to not notice misspelling; just one little bar a bit higher. I found myself making the same mistake in another post today, but I caught that one.

Apparently, we have a tiny cluster of neurons that make us sigh every (5 or 15, I forget) minutes, to clear more CO2 from our lungs. We don't notice these (at least I didn't). Since developing ME, I've found myself doing these deep sighs, often several times a day. My guess is that ME affects the function of those few neurons or their associated glial cells. It probably doesn't need much dysfunction to change the parameters of sighing.

My comment proved quite useful to me. I finally realized that my sighing symptom started early in my disease, when it seemed to be a standard Type IV sensitivity. So, it seems likely that I had ME from the start, with the sensitivity as a symptom, rather than developing ME from years of Type IV reactions.

 

Sounds like you've been having a really tough time @Aldebaran's Star , I'm so sorry.

I'm afraid I dont know that much about the current state of affairs re FDIA or what the current situation is with paediatric ME etc. Not having any kids myself I've only taken things in in a general way rather than the details.

If you're concerned about being accused or about any of it then i would certainly encourage you to reach out to the Tymes Trust, Dr Speight, Dr Charles Shepherd at the MEA, not sure of other sources.

You might also want to start a thread here entitled something such as 'My daugher has ME/CFS, anyone got any advice', or something like that. I'm sure there are people here on S4 who are parents of children with ME, whose advice might be more useful than my generic thoughts.
& this thread will only attract replies from people interested in sleep issues, so you might reach more people who are in a similar situation with a better title and can give more up to date or focussed suggestions.

Just a thought.

But feel free to ignore if its not the right thing for you

edited: for sense

 

Sleep doesn't improve PEM in the same way that good restorative sleep doesn't prevent PEM.

 

@JemPD
You have already brought so much to the table. I actually feel like you are holding my hand. I have indeed been alone all this time, showing a strong and resilient face for my daughter, and I have been, but I have pushed so hard for so long only to reach a dead end with these twits with degrees. You and others sharing have opened up several pathways to follow. Thank you all for putting oil in my dimming lamp.

 

@Aldebaran's Star I am so sorry your daughter and you are in this horrible situation.


I agree with @JemPD it would be wise to contact all these people.

Re making a thread, make it members only. And give an age bracket, like tween, early mid or late teen for your child with ME, her level of severity and the very general area you’re in if you feel comfortable with that or leave this out, it would be say north east England or something.

People on here would have ideas to offer based upon the above.

Leave out anything where a doctor or school person might identify themselves or you.

Also if you don’t want to do this you can search for info on children and policies on here and request to direct message the relevant people. Mods can advise.

 

@Ash Thank you for your kind words and advice. It is like, destiny, for me to have come here -- so randomly....Or was it?
I came here desperate, empty and dim, and now I have truly amazing people at my side, I am completely blown away and ever grateful.
You all have done a wonderful job here. We are no longer alone.

 

@Creekside I asked my daughter about deep sighing, she was amazed that I asked her about something that specific, she shares that trait with you.

 

That's good to know. I think I asked about deep sighing a few years ago, either here or on Phoenix Rising. I don't recall many "me too!" responses.

Knowing that someone else has the same symptom or weird response to some factor does help cope. I think it's the "I'm not alone" feeling.

It's too bad our symptoms are so hard to clearly define. Otherwise we could build a database of specific symptoms and responses to factors, and treatments that worked for each combination, or factors that needed to be avoided. In my 20+ years of ME, I've stumbled across several treatments that worked really well for me, but haven't worked for anyone else. Is there some pattern in factors that might indicate who else it might work well for?

 

@Creekside Yes, it is comforting and warm, my daughter felt the same when I discussed what you had shared. Trying things is hard for most ME people, usually they are taking multiple drugs/supplements etc. To know if something actually works is a long and sometimes risky process. I think that there are patterns. They are beginning to study subsets in ME symptoms having particular traits.

 

A lot of people ask what to do about one single symptom or response. I think that's a lot like asking "What should I get <person you don't know> for their birthday?" It totally depends on that person, so you can't expect much help from that question.

If you provide more details, such as "Symptom X shows up on hot, cloudy days 40 minutes after drinking coffee (with milk, no sugar)", then maybe someone else might say that they have the same pattern, and that buckwheat with coconut stops the symptom (or they just avoid coffee or chocolate on hot cloudy days). Details can make a difference. For me, I'm far more likely to respond to a posting if there are useful details, rather than scant information that applies to most PWME.