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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Looks like www.boots.com might have someYe
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
Oh brilliant! Never even thought of checking them. Just took my pharmacists word for it. Thanks a millionLooks like www.boots.com might have some
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?
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has someone hacked xchocoholic's account? or using it???? Im struggling to believe that this comment came from there.
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.
SoI hate thinking that he's missing out on all the fun of being a teenager.
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.
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 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
As I know a lot of the suffering which goes on with this illness does go on unexpressed (much couldnt even be described well).
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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
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?
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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.
She is relying on hit and miss google searches so any clearer directions would be appreciated.
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.
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?
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!