Physio suggestions

[perrier]

Thanks again... You are a wealth if info !! sorry to hijack your thread Perrier. Maybe your daughter can benefit from this..

Hijack away! )) your questions are helpful too.

I thank SOC for explaining both are needed.

My daughter has tried coq10 many times,with gut pain resulting.

This morning ( as a result of your post) I put into her smoothie an ubiquinol from dr sears but it's only 50 mg....which this doctor thinks is enough!! I guess for regular folk, it's ok.

Any other advice you have will help. And are you permitted to name your doctor on the site?

 

[Sushi]

Any other advice you have will help. And are you permitted to name your doctor on the site?

Yes, you can name your doctor.

 

[Billt]

Hijack away! )) your questions are helpful too.

I thank SOC for explaining both are needed.

My daughter has tried coq10 many times,with gut pain resulting.

This morning ( as a result of your post) I put into her smoothie an ubiquinol from dr sears but it's only 50 mg....which this doctor thinks is enough!! I guess for regular folk, it's ok.

Any other advice you have will help. And are you permitted to name your doctor on the site?

Perrier, thanks for sharing too. It does help to know others are out there with similar issues. My son is 25 and battling this. Bad enough when we get sick, but when it's our kids it makes it much harder .... Hope she feels better soon

 

[perrier]

Perrier, thanks for sharing too. It does help to know others are out there with similar issues. My son is 25 and battling this. Bad enough when we get sick, but when it's our kids it makes it much harder .... Hope she feels better soon

Hi Billt,

Yes, to watch one's children suffer is such a horror, because the natural order is somehow violated. My heart is not broken,it's smashed, it's pulverized, from watching a young person robbed of everything I had: a profession, a family, freedom etc. I just find it very hard.

This is why I am so angry about our society for not moving more swiftly on this illness, say as they did with aids. I now know so many young people who are suffering. It's completely inexcusable.

 

[Mij]

Oh yeah, the specialist also suggested adding PQQ once you've been on the high-dose CoQ10 for several months. Supposedly PQQ helps generate new mitochondria. IIRC, she said it's a waste to take it until you've built up CoQ10 stores, though. She said most of us are very CoQ10-depleted.

Did your doctor explain why we're depleted? Do we just use it up faster? Can we eventually stop taking it once our stores are optimal? Or do we continue based on how we feel on it?

Interesting about building up levels before taking PPQ. Perhaps this why I didn't feel any noticeable benefit when I took PPQ a few years ago. I may try it again.

 

[taniaaust1]

Hi SOC

My daughter had a 4 th haemorrhage, and this brought on a relapse. She has been now , for 14 months, weak, prone to PEM from any slight exertion, and a collapse which lasts for weeks. Yes, she could walk,before this, not normally, but she could walk a block.

Seeing this was brought on by a haemorrhage and she could walk a block before this... I wonder if its related to her blood volume.

Maybe her blood volume isn't now regulating right after that haemorrhage??? or maybe the blood volume dropping during the haemorrhage in a ME/CFS person who possibly already had low blood volume like many of us do.. maybe that has damaged something in her body? (what? I have no idea but with low blood volume, organs and all other parts can suffer).

Though I do often get dizziness with my ME/CFS low blood volume, sometimes I dont get the dizziness and instead my legs just suddenly go and I cant walk (or my legs or feet feel weighted).

I've just spent 2 and a half mths not able to walk safely just 3 metres cause I was off my normal postural orthostatic tachycardia sydrome (POTS) treatment (my leg muscles very noticably atrophy in that time but that wasn't why I couldn't walk). POTS is a common coexisting condition to ME/CFS.

Maybe POTS testing in her case would reveal POTS? but I thinks she's currently far too ill to have this test currently done so I don't think she should. (maybe a modified POTS test eg laying to sitting test for POTS "may" show up something and could be attempted. I know when I had worst POTS then I do now, it would even show up on a laying to sitting test)

So, the distance between these horizontal surfaces is not large, just say between 5 and 10 meters or so. That's her maximum distance on good days. And she can't seem to increase the distance. When she tries, as she did today, she becomes violently ill, with horrid malaise, burning all over so she needs Tylenol for that and the pain.

The pain may be due to muscle weakness or muscle atrophy....I don't know. But it's getting worse now. The whole pattern is generally getting worse.

I doubt her pain is due to muscle weakness or muscle atrophy with her whole pattern getting worst. Someones muscles being weak or atrophied, do not make them "violently ill" when they try to do things.

You daughter is doing exactly what she shouldnt be doing, its obvious she's ME/CFS crashing from over exerting when she tries to walk. Keep doing that and her ME will get worst and worst. She needs to start listening to what her body is telling her, its the only way she probably may be able to stop the progression of what is going on there.

You need to let go of this though of getting her walking and instead go and get her wheelchair and make sure shes' not over doing things to the point of crashing and worsening her condition.

Tell her its okay to use a wheelchair and be pushed in one if needed. She needs to learn where her limits are (how much she can do without worsening things) .

from your post there seems to be no awareness there that .. pushing to do things.. makes many ME/CFS people worst (and some don't recover then from that).

And I'm not looking forward to tomorrow, as she may be completely bed bound eating in bed.....from the exertion of trying to walk a little more today.

It's as though as the years of illness continue, she is getting weaker and able to do less and not the reverse.

and that getting worst and worst will likely continue on till she learns to manage the illness better and stop pushing her body like she is now. If something makes her worst, don't keep doing it.

sorry that this post sounds harsh. I feel for both your daughter and you.
........

Don't push anything onto her which is hard for her to handle. Be aware that with severe ME even getting a massage can crash some a bit and be too much (and massage wont solve severe ME and get a ME patient walking). I know when I was very severe (I was left not able to walk for most of 9mths) that would of actually made me even worst .

Been there, done that. I was essentially bedbound, only getting up to go to the bathroom. IMO, no exercise or physio is going to help in those circumstances. For me it took (1) treatment for orthostatic intolerance, (2) heavy-duty antivirals, and (3) very high dose CoQ10, to get past PEM from activity as slight as walking across a room.

I completely agree with SOC, no exercise or physio is going to help a ME person in this situation. Like SOC I base this on my own experience with severe ME. (physio made me worst!!! Take care. The only suitable physio would be ones who understand severe ME and they are as rare as hens teeth).

Consider getting your daughter to one of the world known ME specialists for tests and some treatment eg anti-virals or whatever. You'd be best doing this now (and hiring a wheelchair so you can push her) then waiting to see what happens as she could keep getting worst or suddenly get far worst then she is now without a good ME specialist (if once she gets worst, there is no way she'd be able to travel at all in any way even in an wheelchair).

 

[taniaaust1]

Been there, done that. I was essentially bedbound, only getting up to go to the bathroom. IMO, no exercise or physio is going to help in those circumstances. For me it took (1) treatment for orthostatic intolerance, (2) heavy-duty antivirals, and (3) very high dose CoQ10, to get past PEM from activity as slight as walking across a room.

The good news is that now, 5-6 years later, I can do housework, walk around stores, climb stairs, work part-time at an easy job, and even exercise a little (NO cardio, just very light strength and stretching with rest every 30 seconds or so). I did NOT exercise until I could manage activities of daily living -- dressing, housework, cooking, shopping.

Good morning SOC

1) on the OI...what do you take? My daughter has been on midodrine andFlorinef, but not much except side effects. So, she's on high salt now, with potassium.

2) she was on immunovir years back

3) coQ did help in the past. Which brand are you taking?

There was a liquid one she used to take,and I've forgotten the brand....it had adoctor's name, and was a small brown bottle.

Good to read that she's trying things, obviously you do have someone with a bit of knowledge involved in things.

Unfortunately in my case with my OI (actually all the kinds of dysatuonomias one gets with ME/CFS) Florinef, salt, potassium and water loading (does she monitor how much water she drinks, she may need up to 3 Litres of water per day).. I still at times even with all that, still need 2 bags of 1 litre saline IVs at times in hospital when I POTS crash which happens if Im on my feet too much, which isn't much at all. (I then collapse and cant walk and often cant even sit up then) to get me back to being my normal severe ME self instead of being severely severe.

I also do better when I wear medical compression stockings, these are often worn in conjunction to doing the other things for OI (usually you have to be doing multiple things to treat this). If she hasn't trialed compression stockings, it would be a good idea if she did as they do help many.

In the past did she have any tilt table testing done to work out what her OI issues are?

4) but at the moment I'm concerned about the effect of muscle atrophy, or whatever. The massage lady says she has no muscles left in the thighs or arms or back.

Thanks for the info. Much appreciated.

Your biggest concern would be better off put on possibility of her getting worst rather then just thoughts on her muscles currently (there has been way to much focus on ME around "deconditioning" causing issues when the issue little comes down to that). Severe ME can cause all kinds of major issues and new symptoms can come in with crashes. Her muscles when she gets to the point of being able to do more again, will fix themselves (they shouldn't be permanently damaged).

The biggest risk I found with muscle atrophy was when I started improving after being bedbound for the 9mths (I was crawling to toilet during that time or using potty by bed). Cause my muscles were very weak, at that point of improving so then doing more, it was then I injured myself to the point I then had to spend a week in hospital.l (I injured my back only picking up a very small brick cause my muscles holding my spine were too weak).

Anyway, the muscle thing and taking care not to injure herself, I suggest put focus on that when she starts improving and hence doing things she hasn't done for quite a while, at that point she will be more at risk of injury. Till then, worry about the ME/CFS itself and preventing that worsening by making sure she doesn't overdo.

 

[SOC]

Did your doctor explain why we're depleted? Do we just use it up faster? Can we eventually stop taking it once our stores are optimal? Or do we continue based on how we feel on it?

As far as I recall, she didn't say why we're depleted... although I have to admit that there's such a huge data dump at my twice-a-year specialist appts, that a lot of details slip my memory. My vague memory after several months is that they don't know why at this point.

IIRC, the doc suggested that we could try the very high dose for a while (no definite time) to rebuild stores and then try cutting back for maintenance. It was my impression that there is a lot of personal experimentation involved since (1) we are all different in so many ways, and (2) as with everything else ME, there's not currently a solid research base on which to make more definite recommendations. So for the time being we go by how we feel.

FWIW, my daughter who has mild ME, took 1800-2400 mg CoQ10 for 3-6 months (and noticed a difference in energy/fatigue/cognitive function), then cut back to 1500 mg about a month ago. That's working for her so far. I tried cutting back and noticed an increase in energy/fatigue/cognitive symptoms, so I'm back at 2400 mg for a while longer.

 

[Mij]

There appears to be primary and secondary deficiencies from what I read here:
.
CoQ10 deficiencies are clinically and genetically heterogeneous. This syndrome has been associated with five major clinical phenotypes: (1) encephalomyopathy, (2) severe infantile multisystemic disease, (3) cerebellar ataxia, (4) isolated myopathy, and (5) nephrotic syndrome. In a few patients, pathogenic mutations have been identified in genes involved in the biosynthesis of CoQ10 (primary CoQ10 deficiencies) or in genes not directly related to CoQ10 biosynthesis (secondary CoQ10 deficiencies). Respiratory chain defects, ROS production, and apoptosis variably contribute to the pathogenesis of primary CoQ10 deficiencies.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3258494/

 

[perrier]

Good to read that she's trying things, obviously you do have someone with a bit of knowledge involved in things.

Unfortunately in my case with my OI (actually all the kinds of dysatuonomias one gets with ME/CFS) Florinef, salt, potassium and water loading (does she monitor how much water she drinks, she may need up to 3 Litres of water per day).. I still at times even with all that, still need 2 bags of 1 litre saline IVs at times in hospital when I POTS crash which happens if Im on my feet too much, which isn't much at all. (I then collapse and cant walk and often cant even sit up then) to get me back to being my normal severe ME self instead of being severely severe.

I also do better when I wear medical compression stockings, these are often worn in conjunction to doing the other things for OI (usually you have to be doing multiple things to treat this). If she hasn't trialed compression stockings, it would be a good idea if she did as they do help many.

In the past did she have any tilt table testing done to work out what her OI issues are?



Your biggest concern would be better off put on possibility of her getting worst rather then just thoughts on her muscles currently (there has been way to much focus on ME around "deconditioning" causing issues when the issue little comes down to that). Severe ME can cause all kinds of major issues and new symptoms can come in with crashes. Her muscles when she gets to the point of being able to do more again, will fix themselves (they shouldn't be permanently damaged).

The biggest risk I found with muscle atrophy was when I started improving after being bedbound for the 9mths (I was crawling to toilet during that time or using potty by bed). Cause my muscles were very weak, at that point of improving so then doing more, it was then I injured myself to the point I then had to spend a week in hospital.l (I injured my back only picking up a very small brick cause my muscles holding my spine were too weak).

Anyway, the muscle thing and taking care not to injure herself, I suggest put focus on that when she starts improving and hence doing things she hasn't done for quite a while, at that point she will be more at risk of injury. Till then, worry about the ME/CFS itself and preventing that worsening by making sure she doesn't overdo.

Thanks Tania for all your recommendations. I think the low volume point you raise is very important and interesting. Perhaps this is what happened. We were in the uk when she bled and their norms of acceptable hemoglobin levels differed from USA and Canada, where my daughter had previously bled. So they gave her plasma light and no blood, as they did in North America
She does use a wheelchair, it's just that as the months after the bleed are going by, now 14 months, and she not improving, rather it's going the other way. Thus, my alarm.
Also, we live in a large Canadian city but the amenities Americans have, are just a mirage here. Do you know that vitamin IV s are not permitted in the province I live in! Doctors get called up by the medical association if caught doing this! So, we have to travel elsewhere for help, and with my daughter so weak this has not been possible. That's the issue too.

Anyhow, this illness is a nightmare, and it robs folks of a normal life! And watching the younger people deprived of so very much is just devastating.

Thanks for all your time Tania.

 

[taniaaust1]

. We were in the uk when she bled and their norms of acceptable hemoglobin levels differed from USA and Canada, where my daughter had previously bled. So they gave her plasma light and no blood, as they did in North America

that don't sound good.

She does use a wheelchair, it's just that as the months after the bleed are going by, now 14 months, and she not improving, rather it's going the other way. Thus, my alarm.

sorry to hear this.

Do you know that vitamin IV s are not permitted in the province I live in! Doctors get called up by the medical association if caught doing this!

wow... most drs wont do that in Australia but it certainly isn't banned.

I've started doing my own saline IVs at times at home as hospital doesnt give me one until I've already badly collapsed and needed ambulance (unfortunately doing saline at home is very expensive when I do this).

I taught myself to do B injections in the past (I couldn't find a dr for that at the time.. and that B helped a bit.. Luckily in Australia B ampules were available over the counter at chemist if one asked as long as one didn't tell them one wasn't under a dr for this). Unfortunately we cant rely on doctors much and of cause extremely severe ME people cant go and catch planes even with help. Whole situation is so bad. I hope your daughter finds something to help.

So, we have to travel elsewhere for help, and with my daughter so weak this has not been possible. That's the issue too.

If its anywhere which can be gotten to by car, consider getting a panel van and decking it out with mattress and blankets etc. When I still could drive, I brought myself a van and set it up in this way as I had to comfortably lay a lot. Getting a van, helped me to get to places for a few years (I used to actually sleep while on my way to places).