Mild, Moderate or Severe M.E.?

[RML]

Pity, was thinking of giving that a go myself ...

 

[AndyPandy]

Ye


Yes you can still get the bath ones but the pharmacist said you can't get the one you ingest any more. Sorry, should have made that clearer

Looks like www.boots.com might have some

 

[zzz]

Looks like www.boots.com might have some

Yes, they do, but they appear to ship only within the U.K. Amazon.co.uk also has pharmaceutical grade (meaning ingestible), and they will normally ship to Ireland. The supplier specifically mentions "worldwide distribution".

 

[AndyPandy]

Bizarrely, www.boots.ie delivers in Ireland, but doesn't appear to stock food grade Epsom salts. Www.boots.com stocks food grade Epsom salts but doesn't deliver to Ireland.

 

[JoanDublin]

Looks like www.boots.com might have some

Oh brilliant! Never even thought of checking them. Just took my pharmacists word for it. Thanks a million

 

[xchocoholic]

light intollerance certainly isnt usually seen in behavioural issues, its common in severe ME thou. Having a non functioning bowel which doesnt even respond to normal laxatives isnt "behavioural" either!. Many with ME do not have documented physical symptoms due to doctors not doing the right tests!

No doctor gave me a trigger point test when I had FM (actually that's not nowdays needed for diagnoses). I only had a Rhomberg test done on me after I'd had this illness about 9 years and only cause I ended up in hospital after a GP saw the state of my physical condition and called an ambulance as he was shocked by my abnormalities. Im STILL trying to get allergy testing done (after 17 years of this illness and having MCS).

Its a huge judgement call to make that this lad probably just has behavioural issues when in all likihood he probably hasnt had the right kind of tests done for ME issues. Im struggling to believe that someone here just said that about this lad.

I think my hope for change and more understanding for ME just went down another 10 notches with that post. If regular members of this board go thinking severe ME cases are probably psychological, what hope is there for us?
................

has someone hacked xchocoholic's account? or using it???? Im struggling to believe that this comment came from there.

Hi @taniaaust1

It was me. Lol. I'm just a mom trying to help another mom. I feel bad for her and her child. It's a mom thing.

I don't know what terms a psych would use for child behavior and don't care.

As a mother I've seen hundreds of children go thru phases of adjusting to life typically from being told "No". Or things not going how they thought it should. Ever go to Disney or the mall or even Walmart ? See all those kids having meltdowns ? They're adjusting.

All mothers see this in their children and in other kids. We mothers have to encourage appropriate social behavior in all the children under our care. Sleepovers, parties, outings to malls or theme parks, etc. We probably had kids over at our house 300+ times a year. I couldn't imagine how difficult this is for teachers or pediatricians. But then again, Mom's have an emotional connection to each of the children under their care.

From what I've seen it''s normal for a child to pull away from his peers when adjusting but they typically get back in the game very quickly. From second to minutes to hours. From what I've seen tho teens may take days.

Complaining of physical symptoms is normal. Typically it only takes being distracted for the child to forget his ailment. Disney is a great place to witness this.

So, I was trying to see if his documented symptoms had worsened and caused these behaviors. Even then imho it's unusual for a teen to avoid his peers for more than a few days.
I hate thinking that he's missing out on all the fun of being a teenager.

Better ? Tc .. x ( Gotta love those Mom jeans )

Ps. I probably should've messaged Joan. Hindsight in pwcs can take weeks if it happens.

 

[taniaaust1]

From what I've seen it''s normal for a child to pull away from his peers when adjusting but they typically get back in the game very quickly. From second to minutes to hours. From what I've seen tho teens may take days.

Adjusting to being sick with ME I do think isnt very comparable to adjusting to the kinds of things normal children have to adjust to. Many of us took years to be comfortable with having our illness and being open about it to others including friends (some never do).

SoI hate thinking that he's missing out on all the fun of being a teenager.

Yeah agree, that is why I tried to suggest to Joan that a short visit to a friend (by that I mean very short) may be far more worth him using his energy on then being encouraged to try to do a shopping trip with mum, the importance of various things need to be well prioritised (as long as it dont make him worst). (I think he probably needs to get his sleep issue and bowel issue better addressed first).

We mothers have to encourage appropriate social behavior in all the children under our care. Sleepovers, parties, outings to malls or theme parks, etc. We probably had kids over at our house 300+ times a year. I couldn't imagine how difficult this is for teachers or pediatricians. But then again, Mom's have an emotional connection to each of the children under their care.

As we know it is can be very hard for someone who hasnt experienced ME themselves (even our own close family members!) to realise the full extent it impacts us and to the agree it does.

It would be very easy for someone who isnt understanding just how very sick their may be (Joan seems to only just have understood that her sons case is severe, I dont think she quite understands just what this really means yet) but anyway to encourage that child into doing something which could make the child crash badly, its risky. We all want the best for our children and for them to be doing "normal things" but we really need to attempt to weigh up those risks when it comes to ME.


I think things do need to be changed some when a child has ME. I myself often need encouragement to SLOW DOWN and DO LESS, that is something my home support help me with at times. I need that far more then encouragement to do something. This can be common in ME.

Where I used to live, a few times I had friends come to the door and try to encouragement me to go to the cinema with them.. the affect of that was to just make me feel sadder as I knew this was something I shouldnt do! I did end up going once due to their "encouragement" and truely suffered cause I did that afterwards and really regreted it a lot.

It would be very hard to be in Joans shoes. Even with having ME myself, I would struggle to know what I should try to encourage a child to do and what I shouldnt if my child had this illness. As I know a lot of the suffering which goes on with this illness does go on unexpressed (much couldnt even be described well).

ME people often arent doing things as they know its just unwise to do. I find that encouragement can cause me to start to doubt my own jugdement of something eg I start thinking "maybe I could do that?" (as its already the case that I wish I was normal! so it can be easy to start to allow anothers "encouragement" impact). That always backfires on me thou when Ive listened to anothers encouragement and acted out on it. (noone else except me knows how sick I are and those suggestions are often truely bad).

So I caution suggestions upon children who as everyone knows are more impressionable then adults and who instinctly want their parents to be happy. I think there is a need to make sure the suggestion is suitable for the persons ME level.

But yeah, fear on what friends may think as someone is sick or has bowel issues, those kind of fears best dealt with if possible to do so without causing issues. Sometimes fears if ungrounded do need to be faced.

My daughter wimped out on going to high school for a year cause an older child on oreinitation day had picked on her, she asked to be home schooled (give me another reason thou for the request).

I didnt find out till she was an adult the real reason this had occurred. (I did not make her go to the normal school after her request but sent up her schooling to be done throu my states correspondance school, she did for a year before deciding she wanted to go to normal school.. obviously at that point ready to face her fear of "older high school bullies"). I really wish Id known what had really gone on at the time. That fear certainly should of been faced rather then avoiding going to school with all her friends for a year (she was a popular child too).

 

[xchocoholic]

I was suggesting he have a friend or friends come over for a short video game session whenever it's a good time for him.

No need to get out. Teens want to play video games. I've NEVER seen a teen turn down food either. Party foods are best. Warm cookies or pizza from the oven work great too.

Imho, he doesn't need to explain his health issues. If asked, he can state why he can't go to school in one sentence but that's all. Gaming is what the kids have in common. Once they get started nothing else matters.

Imho, since he's embarrassed by his condition the less he says about it the better. He can just change the subject to whatever new movies are out, new gaming equipment, etc. Worst case scenario, he tells his friends they're bumming him out and he'd rather play video game. "Yo dude. You wanna play or not ? "
☺

Tc .. x

 

[SOC]

I was suggesting he have a friend or friends come over for a short video game session whenever it's a good time for him.

No need to get out. Teens want to play video games. I've NEVER seen a teen turn down food either. Party foods are best. Warm cookies or pizza from the oven work great too.

Imho, he doesn't need to explain his health issues. If asked, he can state why he can't go to school in one sentence but that's all. Gaming is what the kids have in common. Once they get started nothing else matters.

Imho, since he's embarrassed by his condition the less he says about it the better. He can just change the subject to whatever new movies are out, new gaming equipment, etc. Worst case scenario, he tells his friends they're bumming him out and he'd rather play video game. "Yo dude. You wanna play or not ? "
☺

Tc .. x

If the boy can play video games for any length of time, which some PWME cannot do for a multiplicity of reasons, this seems like a good idea. A little manageable normalcy often helps. Lots of teens are very sympathetic and are willing to just sit around and talk or watch a movie if that's all their sick friend can manage.

I've dealt now with 3 kids with ME, one mine and two others I tutor. I don't encourage them to not talk about their illness. In my experience encouraging them to pretend they're well, or that there's nothing wrong, makes them feel like being sick is something to be ashamed of. It also makes their friends think there's something shameful going on because everybody avoids the topic entirely. It's not the kids' fault they're sick. They wouldn't be embarrassed to say they had cancer or a neck injury, why should they be embarrassed to say they have ME?

Being straightforward about it seems healthiest to me. There's no harm in saying you have a severe illness which makes you very sick and fatigued so you can't do many of the things you want to do. You can even say there's not a lot known about the illness and not many helpful treatments yet.

However, I DO tell the kids that very few people want to know a lot of details about other people's illnesses. There's no need to describe symptoms, or go on and on about what you have to do, or can't do. Just say you're really sick and can't do a lot. Most teens can be sympathetic. I also tell the kids that if they have "friends" that make fun of them for being ill, or are otherwise unkind, they aren't friends anyway and it's best not to deal with them.

 

[xchocoholic]

Joan said he was gaming online.

I was just trying to make his transition back into hanging out with his peers easy and entertaining. After they've become re-acquainted he may want to open up more. But it's completely his decision.

Tc .. x

 

[JoanDublin]

As I know a lot of the suffering which goes on with this illness does go on unexpressed (much couldnt even be described well).

.

I think that is so true. There have been times when he has surprised me by mentioning some 'new' symptom at the doctors which he hasn't told me about. Who knows. Maybe it's because he has begun to accept it's just another 'M.E.thing' that nothing can be done about. At least that's what his experience has shown him.

I know he also gets fed up talking about his symptoms. I mean what kid wants to hear all about the bits of them that have 'gone wrong'. It must eat away at their self confidence.

It is a fine balance between reining him in and letting him have some freedom to develop. As things stand right now and for the past number of months he hasnt had the energy to go out anywhere, except for that one day in June which led to this latest bad crash, so its easy to keep him rested, etc. He is so determined to 'get better; though and says as soon as he feels better he wants to go back to school - despite Dr. Speight recommending that he stay away from school for another while because of the risk of infections. So we may have this battle ahead of us...

He is very mature for his age and a very practical young lad. He knows how ill he is and he has the inner strength not to let some of the crazy docs get to him. As he said to me recently 'I'm not going to let them get inside my head. I know what I'm going through, even if they don't.'

Fortunately I do have some understanding of what he is going through. I have SLE and Fibromyalgia myself, as well as COPD, so I understand elements of what he is going through, particularly the type of fatigue that comes along with this damn illness. He describes it pretty well. He says that sometimes he feels like he has been drugged.

I definitely believe ME is far worse than Lupus and I said that to the GP the other day. I know some people are extremely ill from Lupus and I dont want to downplay it but at least there are treatment options which can work very well to get the disease under control. There is nothing like that for ME.

I have downloaded that Erica Verrillo book and have been reading through it tonight.

I will be taking away a lot from this thread. Some very thought provoking comments and some very practical help, for which I will be eternally greatful. Thank you each and every one who took the time to help.

 

[JoanDublin]

Joan said he was gaming online.

I was just trying to make his transition back into hanging out with his peers easy and entertaining. After they've become re-acquainted he may want to open up more. But it's completely his decision.

Tc .. x

Yep he is playing some online games and that way he has some contact with his friends. It's no substitute for his sporty friends who are off playing football, swimming and, another love of his, table tennis, but he is happier to communicate with his friends this way for now. There are no risks involved. No exposure, if you know what I mean.

The problem with inviting people over is that he never knows what the next day will bring. As I write this he has been in the toilet for almost an hour having had to use his second enema today. He is always in pain using them and it takes a while for the pain to subside. In addition to that he woke up today with his nose pumping blood and needing to do an immediate enema so you can imagine the poor kid! Sitting on the loo with tissue plugged up his nostrils and trying to go to the toilet with blood all over his face and the bed sheets. Not something he'd want to be explaining to his friends if they were to call over!.

There is a plan in place for his aunt to bring him to the cinema tomorrow if he can wake up and has the energy to go but we will have to wait til tomorrow to see if he can make. Day by day - you know yourself .

Hopefully someday soon he will be feeling well enough and confident enough to have his friends come over. Fingers and toes crossed

 

[TigerLilea]

Its a huge judgement call to make that this lad probably just has behavioural issues when in all likihood he probably hasnt had the right kind of tests done for ME issues. Im struggling to believe that someone here just said that about this lad.

I think my hope for change and more understanding for ME just went down another 10 notches with that post. If regular members of this board go thinking severe ME cases are probably psychological, what hope is there for us?
................

has someone hacked xchocoholic's account? or using it???? Im struggling to believe that this comment came from there.

I'm not suggesting that Joan's son has behavioural issues, however, in defense of xchocoholic's post, I've read many posts over the years written by CFS/ME forum members, and I do wonder sometimes if some people's problems aren't more psychiatric rather than CFS/ME. Some people diagnose themselves, and others have doctors who don't understand CFS/ME, or consider CFS/ME and depression to be the same thing. So just because someone claims to have CFS/ME doesn't always mean that they do actually have it.

 

[xchocoholic]

I'm not suggesting that Joan's son has behavioural issues, however, in defense of xchocoholic's post, I've read many posts over the years written by CFS/ME forum members, and I do wonder sometimes if some people's problems aren't more psychiatric rather than CFS/ME. Some people diagnose themselves, and others have doctors who don't understand CFS/ME, or consider CFS/ME and depression to be the same thing. So just because someone claims to have CFS/ME doesn't always mean that they do actually have it.

Yikes. I have pem so I completely missed this part. Surely you guys know me by now ? How could anyone think I would think ME is a psych problem ?

I wasn't saying he didn't have ME just that the symptoms listed were behavioral. I later understood it wasn't meant to reflect all his symptoms.

Fwiw, from what I've seen it's common for kids, esp teens, to present physical symptoms as opposed to talking about their feelings. No surprise to parents or health care workers, right ?

I have a great example of this. A child was taken to the ER for non typical allergy symptoms. While there a friend showed up with a broken arm.

The two were so excited to see each other that both were intentionally ignored by the ER staff. When the mother noticed other patients with non life threatening symptoms go in before her child, she questioned the ER staff as to why.

Their answer was that they concluded that neither child was really sick or injured because they were playing.

These hc workers were wrong this time. The allergic reaction had worsened and the other child's arm was broken. Luckily no harm came to either child.

Gotta rest. Tc .. x

 

[zzz]

She is relying on hit and miss google searches so any clearer directions would be appreciated.

A relevant article entitled Diet, Drugs, Herbs and SIBO: One ME/CFS/FM Finds Relief with the Pimentel Approach appeared on Health Rising a couple of days ago. It makes reference to the book A New IBS Solution: Bacteria-The Missing Link in Treating Irritable Bowel Syndrome by Mark Pimentel; this book describes the SIBO treatment protocol in detail.

 

[taniaaust1]

Yikes. I have pem so I completely missed this part. Surely you guys know me by now ? How could anyone think I would think ME is a psych problem ?

I didnt at all take tigerliehs post as you did, I didnt think it was directed at how your ME/CFS is at all, I believe it was probably a general post about how some may say they have ME/CFS but may be self diagnosed and hence wrong.

 

[xchocoholic]

I didnt at all take tigerliehs post as you did, I didnt think it was directed at how your ME/CFS is at all, I believe it was probably a general post about how some may say they have ME/CFS but may be self diagnosed and hence wrong.

Oh. I see now. Damn my cfs brain. Time to give it a rest. Tc. X

 

[TigerLilea]

I think my hope for change and more understanding for ME just went down another 10 notches with that post. If regular members of this board go thinking severe ME cases are probably psychological, what hope is there for us?

@xchocoholic and @taniaaust1 - Sorry, my point probably wasn't very clear. I certainly wasn't implying that anyone thought that ME is a psych problem, nor do I think that xchocoholic was implying that either in her post. It was regarding the above quote. I don't think that when someone questions whether some symptoms could possibly be behavioural, psychological, or unrelated to ME/CFS that it in anyway sets us back. We need to question some symptoms in order to be taken seriously by the "public" and medical professionals. Not everything is ME/CFS related but sometimes we forget that. It is when we question things that we get a better understanding of them.

 

[JoanDublin]

How my doctor had me start this was to take a part dose of it every hour till my bowels responded (he needs to drink a lot of water with it), I think I ended up going double the recommended dosage in total at first). I think the amount he had me take was 5g doses every hour.

Once I had a response. He had me stay on that total amount I'd had to take for a week I think it was (maybe it was just for several days?) He got me to stay on that starting amount for a little time to like completely clean out my bowels and getting things used to moving again. (It wasnt pleasant and when my peristalisis was triggered on this, I even ended up with some diarrhear and it also can cause a heat feel around the anus.

Then after a week I cut it back to an amount which just had me go once a day (he said that was very important to go once a day if one had this kind of issue, keep the movement up and to increase a little if one missed a day of going).

Can I just clarify something with you. When you say the specialist had you stay on 'that total amount' do you mean the cumulative amount you were taking that day or since you started? Say for example you started on 5g per hour and it took you 12 hrs to have a response would this mean you would be maintained on a 60g dose for the week? And if so, was this a daily dose or hourly dose? I'm just not terribly clear and I wanted to write it up for the hospital consultant tomorrow. Thanks a million

@taniaaust1 *Added in later* I think I figured it out!

 

[taniaaust1]

Can I just clarify something with you. When you say the specialist had you stay on 'that total amount' do you mean the cumulative amount you were taking that day or since you started? Say for example you started on 5g per hour and it took you 12 hrs to have a response would this mean you would be maintained on a 60g dose for the week? And if so, was this a daily dose or hourly dose? I'm just not terribly clear and I wanted to write it up for the hospital consultant tomorrow. Thanks a million

@taniaaust1 *Added in later* I think I figured it out!

My specialist told me I couldnt over do this, and just to increase as much as needed.

He wanted things to be very runny for the starting clear out (it was horrible that first week, it was runny so much when I FINALLY got a bowel response, that I was loosing some bowel control, liquid poo). Im glad he only had me to that for a short time (that first week) to make sure everything had completely cleared out. (If you end up trialing this with your son, I suggest as he's still a child to not do it for a week but maybe only a few days like that). A good rule of thumb to change this to a teen would be to half things eg I was taking 5g per hour, maybe 2.5g per hour for a teen till one gets desired result.


The only thing I dont like about epsom salts (other then the really horrible taste and the warm bum) is they can cause quite sudden urges to go and one will have to go to the loo right away. (It can work astoundidly fast!! which can be quite relieiving if one knows one needs to go eg I get tummy pains.. but cant go.

best luck with the next medical appointment he has.
...........

Im not sure now if I stayed on about 60g the whole week, Cause I got such bad diarrhea, I ended up cutting the dose back as it was still runny as the specialist wanted at first.

I just suggest if he tries it, to work out what is needed by what his bowel does. The idea is just to stay runny for a short while to make sure everything is completely cleared out and then going to a dose in which will have one go ONCE PER DAY and have that as the goal (which can be given in smaller amounts or in one lot if you've worked out what that would be). I did find it hard to work out the amount to routinely stay after the initial cleaning out period as on some days I needed an extra 5-10mg then another day, so sometimes would take a small second dose later on if I still hadnt gone.